I Love You More

Goodbye

2010-09-18T10:59:00.003-05:00

I've moved all my stuff out and into my new home. It's time to take one final look around and close the door on my old home. I'm terribly excited about what can happen but it's a little bittersweet to be changing the name. I wrote this on facebook this morning:

I really believe that this is going to help families who are going through what we have gone through. I truly believe, as it grows, it will be such a resource. The blog is the same so... whatever... but it's the other stuff. The resources... the soon to come FAQ, the stories of other kids that will be included... THAT is going to be the heart of this site for me and that stuff is what will be a source of great comfort and much needed CLARITY for so many families.

I am REALLY excited.

The blog hopefully is interesting enough to keep you coming back but I believe this new platform is going to make it easy for other families that have a child who is newly diagnosed with melanoma to find the site. Ultimately, they are the ones for whom I built it.

Check out the menu at top to see what will be available on the site. There are some areas still "under construction" because I am waiting for content from others but it will continue to grow and expand. I'm hoping one day to even add a message board so people can come and get their questions answered quickly by folks who have been there, done that. Dr. Hughes has agreed to be my "professional lurker" so that we can get accurate, timely information to people who need it.

Please visit and if you look on the right hand side, you will see a "Sign Me Up!" button. All that does is send you an email when there is a new post. Your email goes no where and I have neither the time, nor the inclination to do anything with it. It just allows the posts to hit your inbox.

If you have added this site to your blogroll, THANK YOU! I would ask that you take the time to change it to the new site. I have lots of people who visit everyday who find me through your sites.

So without further ado, you are all invited to move in with me at: (Click on the picture below.)

http://littlestwarriorspot.com/

How I Became A School Teacher and How They Ended Up Teaching Me.

2010-09-17T02:02:00.007-05:00

I read a lot of blogs. And if I have learned anything from reading these blogs is should have been to never, ever promise an update the following day. Because then you are guaranteeing that you will not post the next day.

Or maybe I'm projecting again. I hate when I do that.

Alright. So I go to Marc's classroom all ready to be "Mrs. Adams". Which I don't mind at all and (tangent warning) really wish was more the norm outside the classroom with young children. I live in the South and unless you are a school teacher or wrinkled with age, people don't refer to others as "Mrs." all that often. Little kids call people Miss First Name or Mr. First Name and though many will roll their eyes and call me old, I prefer the more formal Mrs. Last Name.

Once, when Marc was quite small, Tom built a low tree fort in our back yard that proved irresistible to the older neighborhood children. So there I was with an 18-month old and six of his 9-year old closest friends when one of them blurts out, "Whas yer name?"

"Mrs. Adams."

*blink* *blink*

"But whas yer first name?"

"Mrs."

So I felt no pangs of vanishing youth when I walked into a roomful of children excited to call me by the same name to which my mother-in-law answers.

Mrs. Isaac had everything prepared for me beautifully and so we started our day with a spelling test and then pretty quickly it was time to take them to music. 40 minutes of Facebook time! Whew! Teaching is tough! I go to collect them and they are ramped up. Time for reading and art which actually translates in a 9-year old's brain to "time for visiting my neighbor and being loud". At 10:30 we switch the T.V. on for a promised 30 minute video that lasted 4 minutes. FOUR! What was even the point?! It was a Schoolhouse Rock song about the Constitution and now it's time for Mrs. Adams to do some actual teaching!

"It's the year 2010 and aliens have landed and taken over the United States of America! They will allow us to choose four of our rights as American citizens but only four. All the rest will be lost. Which rights will you choose to keep?"

We spent about 15 minutes discussing each right and as we went down our list, the kids started getting agitated. I heard, "This is hard!" and "I don't want to lose any of them!" I was so happy to be stimulating them so much! Maybe I should have been a homeschooler! I'm great at this! They are so engaged and interested!

Then we break into small groups to choose our four rights and one child comes up to me with tears in his eyes. Real bona fide tears people! And he swallows hard, and asks with a trembling voice, "Are aliens really coming to take over us?"

Apparently I actually missed my calling. I'm not sure what scaring the daylights out of a kid with my realistic portrayal of life taken over by aliens would suit me for but surely parents would "peacefully assemble" to protest the psyche scarring that I would be bound to inflict.

So, with assurances that this was all PRETEND they engaged in very heated discussion over which rights to keep.

In the end, not one person voted to keep the press (who reads newspapers anyway?), they didn't mind excessive bail and no one stood up for speedy trials. All the others got at least one vote.

It was very fascinating to me the one right they were all absolutely sure needed to be kept. Not everyone said freedom of speech. Freedom of religion was important to some but not all. Many wanted to retain the right to peacefully assemble. But every one of those little 4th graders felt that there was one right that was so important that they all refused to give it up.

The right to bear arms.

This was so interesting to me because in the minds of these children, the right to own their own gun was so cut and dry, so black and white and they truly believed that if they simply held onto that one right, they could set the world straight again. If those aliens started mistreating them (which they obviously already were, having taken so many of their rights away) then they could just shoot them dead and get all their rights back! Some kids even made skits depicting how they would storm the gates of the enemy ship and win back their right to face their accuser in a fair trial or worship wherever or however they choose!

I have never given much thought to the right to bear arms other than knowing I did not want to get into the debate. I understand the concept that "guns don't kill people, people kill people" but I also have considered it utterly ridiculous and immoral to sell guns that serve no purpose than to slay a human being. I could see both sides of the issue and would not have considered taking sides. It's amazing to me how a group of 9-year olds could help me see this issue in such stripped down, get right to the heart of the matter detail.

If aliens took over the United States, and we had our guns, we could keep our rights. It's that simple. Taking away guns from the citizens of a country leaves them vulnerable to lose everything. Aliens are pretend, but bad guys who want to steal stuff are sadly, not. Sometimes, they even end up in charge.

We don't own a gun and so there is not one in our house. I had thought about getting one when my babies were little and my husband still traveled with the Army but now I never feel a need for one. But one little 4th grade class has taught me how important it is for me to never, ever consider taking away your right to own a gun.

Which rights would YOU keep if you could only keep four?

First Amendment – Establishment Clause, Free Exercise Clause; freedom of speech, of the press, and of assembly; right to petition
Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.

Second Amendment – Militia (United States), Sovereign state, Right to keep and bear arms.
A well regulated Militia being necessary to the security of a free State, the right of the people to keep and bear arms shall not be infringed.

Third Amendment – Protection from quartering of troops.
No Soldier shall, in time of peace be quartered in any house, without the consent of the Owner, nor in time of war, but in a manner to be prescribed by law.

Fourth Amendment – Protection from unreasonable search and seizure.
The right of the people to be secure in their persons, houses, papers, and effects, against unreasonable searches and seizures, shall not be violated, and no Warrants shall issue, but upon probable cause, supported by Oath or affirmation, and particularly describing the place to be searched, and the persons or things to be seized.

Fifth Amendment – due process, double jeopardy, self-incrimination, eminent domain.
No person shall be held to answer for any capital, or otherwise infamous crime, unless on a presentment or indictment of a Grand Jury, except in cases arising in the land or naval forces, or in the Militia, when in actual service in time of War or public danger; nor shall any person be subject for the same offence to be twice put in jeopardy of life or limb; nor shall be compelled in any criminal case to be a witness against himself, nor be deprived of life, liberty, or property, without due process of law; nor shall private property be taken for public use, without just compensation.

Sixth Amendment – Trial by jury and rights of the accused; Confrontation Clause, speedy trial, public trial, right to counsel
In all criminal prosecutions, the accused shall enjoy the right to a speedy and public trial, by an impartial jury of the State and district where in the crime shall have been committed, which district shall have been previously ascertained by law, and to be informed of the nature and cause of the accusation; to be confronted with the witnesses against him; to have compulsory process for obtaining witnesses in his favor, and to have the Assistance of Counsel for his defense.

Seventh Amendment – Civil trial by jury.
In suits at common law, where the value in controversy shall exceed twenty dollars, the right of trial by jury shall be preserved, and no fact tried by a jury, shall be otherwise re-examined in any court of the United States, than according to the rules of the common law.

Eighth Amendment – Prohibition of excessive bail and cruel and unusual punishment.
Excessive bail shall not be required, nor excessive fines imposed, nor cruel and unusual punishments inflicted.

Ninth Amendment – Protection of rights not specifically enumerated in the Constitution.
The enumeration in the Constitution, of certain rights, shall not be construed to deny or disparage others retained by the people.

Tenth Amendment – Powers of States and people.
The powers not delegated to the United States by the Constitution, nor prohibited by it to the States, are reserved to the States respectively, or to the people.

That day in a classroom, I got taught again how to be so thankful to be a citizen of this great country.

How I Became A School Teacher: Part 1

2010-09-13T22:44:00.000-05:00

I wanted to be a homeschooler.

I had an idea of what it entailed as I was homeschooled myself for 2 1/2 years. My mom was certainly on the cutting edge of the movement and we only knew of one other family who was homeschooled at the time and they closed their shades and did not allow the children out of the house during school hours. Not my mom though. She could not stand the school system we were in and when she made up her mind to pull us out she did so with pride and we never hid. She was strong and very brave.

Interesting memory to revisit now that I have the perspective of motherhood.

As I grew up and thought about having my own family I decided that I would be a homeschool parent. And I decided this before I had children. It was going to be wonderful. I would bake bread and teach them math in the process. They would be so grateful to have such an attentive mommy and daily I would get to see with my own two eyes how they are growing and learning because of the knowledge that I was imparting to them.

My children would rise up and call me blessed!

Then reality hit in the form of an 18-month old who would get infuriated at the mere thought that I might be trying to teach him something. He didn't want to count cars. He wanted to see how much damage they could do to the hearth if he flung them at the fireplace! He didn't want to make art. He wanted to eat paint. He didn't want to just read the book. He wanted to tear it up when he was done. And most telling, anytime he struggled, I... his mother... his future teacher.... was the last person he wanted to help him. Apparently I have the unique ability to frustrate the living snot out of my son.

Sending him off to let someone else teach him started to sound appealing.

As he got older I would laugh at myself. "Haha! I was going to homeschool! That was a good one!" Then oddly, it seems my circle of friends started including teachers. Then as one friend would move out of my life and another would move in, more and more of my circle seemed to include teachers. Now I feel like I can't get on the phone with a friend without calling either a public school, private school or homeschool teacher.

And they all sound like nightmare jobs to me.

I work in insurance. And I like it. I know you think that above sentence about bad dreams was hyperbole but no! You don't understand. I have had nightmares about being left in charge of small children with the goal of educating them. Sometimes I'm even in my pajamas in this dream further illustrating how how vulnerable and exposed the thought of being a teacher makes me feel.

So it was no small shock but rather a great cause for laughter when Marc's 4th grade teacher called to ask a little favor. "They have scheduled a surprise in-service for the teachers and I wondered if you could come sub from EIGHT O'CLOCK IN THE EARLY MORNING ALL THE WAY UNTIL TWELVE O'CLOCK IN THE AFTERNOON?" Okay. So she didn't shout that last part or make it sound so ominous. That was all in my head. Haha. So after I stopped laughing and picked myself off the floor and realized it was not April 1st I said, "Sure! No problem! I'd love to!"

No I didn't.

I did agree to do it but not without a bit of nervous laughter and assurances that I could fake it just fine.

I'll tell you how it went tomorrow!

Rachael and her peeps.

2010-09-11T01:11:00.000-05:00

Dr. Hughes loves his new hat.

He was really tired and I will be surprised if he remembers we were there. It was a good visit and I honestly wish we lived closer because I would enjoy having him and his family over for dinner sometime. He's a good guy and pretty much as goofy as this picture suggests. Fah-reaking brilliant but goofy. I like that in a kid's cancer doc.

We got to meet Grace and her family and as soon as the grown-ups got out of the way the girls hit it off wonderfully.

I think Rachael really liked being the older, more experienced girl for the first time but mostly I think she just liked Grace. Two normal, happy little girls. With matching scars.

Please keep little Grace in your prayers as her family prepares to start high-dose interferon. She had her lymph node dissection and they all came back clear. She had a little sentinel lymph node that worked very hard for her body and her parents get to breathe a little easier now that she is officially No Evidence of Disease!

Hump Day

2010-09-08T08:06:00.002-05:00

I'm going to Houston this afternoon to ~~party all night with Jeanne & Co.~~ visit Dr. Hughes for Rachael's monthly check-up. Should be very routine and hopefully we'll get to meet another family who will be starting interferon soon.

In the meantime, I'll leave you with a baby picture of my sweet warrior.

Okay, okay... I'll leave you with two

I need to stop! I have to go to work!

Have a great Wednesday!

Scattered Reflections

2010-09-04T12:01:00.000-05:00

I've been going back and reading all my old posts and it is very strange. I'm feeling a lot of emotions that I would not allow myself to feel then.

That's not quite right.

It's not that I wouldn't allow myself to feel... it's that I could not feel them. My brain literally did not allow me to feel weight of what was happening those first couple months but now when I read back on it my heart hurts.

We're coming up on one year No Evidence of Disease. A wonderful milestone that I plan to celebrate. About 11 months ago I wrote:

It’s hard to put it into words but to oversimplify my thoughts… our life has changed.

A year into this, how has life changed for us?

1. I think about the sun every single day. I don't want to say I'm paranoid but my former self would have said I'm paranoid.

2. I no longer think "15 minutes without sunscreen is okay." As a matter of fact, with the sun being so hot this month I get nervous about the sun she gets standing in the shade and I would not let Rachael go 5 minutes full sun without it.

3. Rachael wears a hat every day. She wears it in the pool. She wears it to the beach. She wears it in the shade.

4. When she says, "I'm itchy," I assume she has a rash.

5. When she says, "I have a tummy ache," I don't question her, I just give her Tums.

6. When she says, "I have a headache," I give her Motrin because I know it works better for her than Tylenol.

7. At least one of the three previous events happens at least every other day.

8. I don't care about "Perfect Attendance" anymore.

10. I know how to stick a needle in my daughter and manage to do it every week without passing out.

10. I ache for other families that are experiencing pain. I might not know exactly what they are going through but I know enough now.

11. I have physically felt prayers being said on my daughter's behalf.

12. I listen to music differently. It's more powerful now.

13. I have met some of the strongest, most amazing and resilient people imaginable.

On that note, please pray for my friend Jeanne. My heart is so heavy for her today that deep breaths only bring tears. She has already been given a supernatural strength but still... still... she needs more. She tells me often that there is strength in numbers and she needs numbers. Number and numbers of people praying for her. Would you flood the gates of heaven with prayer for Jeanne today?

A story about my husband.

2010-09-03T10:00:00.005-05:00

Tom works in a large airplane hangar that is wide open and breezy. Except when it is in the low 100's. Then he comes home sweaty and tired and really, really smelly.

Yesterday it was a nice cool 98 degrees and he came home in a great mood and we went about our late afternoon activities that mostly consists of negotiating which adult gets the nap. A treaty could not be reached so we both rejoined the kids and I wandered into the kitchen to think about making dinner. I didn't go to actually make dinner. Just to think about it.

So I'm standing there thinking about making dinner and I see a cage sitting on my counter. "Tom? Forget to tell us something about the live animal in my kitchen?"

My husband does not bring little creatures home and this particular little creature was so wonderful. So alluring that Marc had to sit on his hands to keep from coming completely out of his skin with anticipation.

My children were completely awed.

Daddy had brought home a hummingbird! A real, true, live, completely freaked out of his little tiny lentil sized brain, honest-to-goodness HUMMINGBIRD!

"Please make it go away."

Look at his pretty red feathers.

Tom says that he got stuck in a spider's web and he was on the bottom of the hangar floor with mucked up feathers and unable to fly. His feathers needed to be cleaned off but first he needed to calm down.

"Ah! The sun! I never thought I'd see you again sweet friend!"

This isn't the first hummingbird to have a similar near-doom in Tom's hangar. The day before, another little guy showed up on the hangar floor and with just a little clean-up he was good as new. This one was a bit more freaked though so that's why Tom took him home. Give him a chance to calm down and also up the Cool Dad Factor a significant amount.

"You can do it little guy! You can do it!"

I swear he was there when I clicked the camera. But when the click was over he was gone. Freedom! Freedom at last!

Tom has a new nickname at work now. He is the "Hummingbird Whisperer".

We have winners!

2010-09-02T23:07:00.000-05:00

The mail came today and just in time for me to announce the winners of the "Name My NEW PROJECT" contest!

Thank you to those who came up with wonderful ideas for the NEW PROJECT. I am almost inspired to start several blogs so I can use more of the really cool names. Almost. But being elbows deep in creating one new blog is enough to drive that idea away. I suspect when it's over though it will be like childbirth. Really really hard but so worth it that you forget the pain.

Except that's not really true.

Anyway. Look what I got in my mailbox today!

The picture I posted earlier of this woman's hat does not do it justice. I didn't know a hat could feel so luxurious but this one.... well... just LOOK!

Why didn't I order two?! Sigh.

I am giving this beauty to the one person, chosen randomly (I assigned everyone a number and plugged the numbers into a random number generator) who left a comment.

Congratulations Amanda!

I'm already super jealous of how cool you are going to look on the beach with this hat.

I would have given this hat to the person whose idea I picked for the name of my NEW PROJECT but he said that he would be donating his prize to the Child Life Group at the Children's Cancer Hospital at MD Anderson. So I thought that it would be more appropriate to give this winner the child's chlorine resistant bucket hat.

I love that my NEW PROJECT has been named by Rachael's oncologist. It feels very kismet-y. Here is a sneak peak at just a tiny bit of content on the NEW PROJECT:

Dr. Hughes explained to [Rachael] that he is a “lump doctor” and it is his job to teach her about her “spots” so that she could learn the difference between “good spots” and “bad spots”. This is the inspiration behind the name of this website. Not only is this a SPOT where people can read about our family, get information about pediatric melanoma and connect with others but it also refers to the SPOTS that we constantly monitor on our children.

Thank you Dr. Hughes for taking an "okay" idea I had and making it absolutely brilliant!

Stay tuned soon for the official unveiling of my NEW PROJECT:

Littlest Warrior Spot!

A Letter To My Firstborn

2010-09-02T00:27:00.004-05:00

I was going through some things that I wrote in the past and came across this letter I wrote to Marc while I was pregnant with Rachael.

Marc is one tough cookie but our relationship has been much better lately. Translation: I am doing a better job of emotionally handling his behavior. This letter is a sweet reminder of my "early love" for my boy. Sometimes that is a really nice emotion to visit.

I thought you might enjoy it as you are waiting to hear who won the contest.

It’s begun, but it’s different than I thought it would be. The morning sickness is different, I’m so tired but I’m not as big as I thought I’d be at this point and time is flying. Mostly though, I’m much more relaxed. I guess it’s sort of a “been there, done that” attitude I have, but I think the main reason is that I already have you. My arms aren’t empty like they were when I was waiting for you. It seems like a lifetime ago, but then I get choked up thinking about how fast it’s already gone. You’re already so smart, and so funny.

And so big.

But you’re still my baby, at least for a little while. And I find myself wanting you to play that role for me – one you’re so happy to do. I hold you like a baby and cuddle you close and kiss you all over and call you my baby and you love it. You’re learning to swim and you call yourself my “baby guppy”. But you’re getting big.

Six days ago we said bye-bye to Nummy. That’s the left side. We still can have Num – the right side – but “Nummy doesn’t work anymore.” You ask, “Can we try?” and I always answer that there is no more milk and it would hurt Mommy. You’re content with Num. You’ve just turned two, but you can count to 20 because that’s how many seconds I allow you to nurse still. Then you ask for “water and a snuggle.”

You used to say when you got hurt, “I need nummy nummy to feel better.” The other day you fell and said, “I need juice to feel better.” I died a little then. Sometimes, when you’re situated right and it doesn’t hurt I’ll let you nurse to fall asleep instead of counting. I don’t do it for you though. I do it so I can soak in your smell and your little fingers resting across my chest and feel your still baby soft hair. I do it for me.

You’ve recently learned the word “favorite” and have had fun trying it out. So, a couple weeks ago, I called you “my favorite”. I knew this wasn’t really healthy though, with a new sibling coming and all, so I added your name to the end of the sentence. After all, that will always remain true. Tonight, right before you went to sleep you mumbled, “I love you Mommy.” I couldn’t help it, I cried.

I have no doubts that when this new one comes and I hold a tiny body again – one that came from my own, it will once again overtake me. When all that new little human knows and needs are my soft arms and warm milk my heart will break into a million more pieces and a floodgate of love that I can’t imagine right now having a capacity for will wash over me. Love that gives me guilty thoughts like, “I never even loved your Daddy like this” will pour out until I can barely breath. Then the new one will be fully mine too – just like you became mine in the same way.

Until then though, you really are my favorite.

His new baby might be a little young for her.

2010-08-31T13:28:00.002-05:00

A couple months ago I received a call from the public affairs person at M.D. Anderson asking if we would be willing to be interviewed for a story on melanoma. I am here to testify that my first thought was NOT, "Oh my goodness, I need to immediately lose 20 pounds."

Yes it was.

It was a fun experience and as if we don't feel special enough every time we go to Houston, this time we had a camera following us.

What is funny about this video is that you can really see the huge crush Rachael has on Dr. Hughes. It is honestly sickening and when we see him I have to avert my eyes, so shameless is my daughter. I brought my best friend Amanda with me to one of her visits and warned her about the impending lovefest. She knows Rachael really well and even she was shocked at the personality change when he walked in the room.

Rachael insists she does not want to be a doctor or any other medical type but rather an artist. Maybe she can marry a doctor.

Check out that cool hat at the end of the video. Want to win one? Leave a comment! Contest ends Wednesday night.

Shade Sucks. Give Me Fun in the Sun!

2010-08-30T12:49:00.000-05:00

In coming up with a name for my NEW PROJECT (whenever I type that out it is REALLY big in my head with a booming voice and an echo and angel music) I was kicking around some ideas with Bo. Who is wonderful. And who you will get to "meet" when the NEW PROJECT is rolled out. So some of my ideas were things like "shadeseekers.com" or "lifeintheshade.com" which, frankly, I didn't like even though they were my ideas. I like the idea of having ideas. I just don't always actually have good ones.

So Bo says, and quite rightly I might add, "Not sure I like the shade reference. I don't want the disease to prevent her from playing in the sun, and hiding in the shade away from other kids."

Bravo Bo. I mean that really. Hearing another "melanoma parent" speak something I believe so strongly, yet question daily, is enough to choke me up.

When Rachael was diagnosed one of my early conversations with Dr. Hughes was me coming to terms with the fact that we live is South Texas where it's really stinking hot! I'm all, "We're going to have to move to where those Vampire books are set and never enjoy outside again and my absolute favorite activity in the world to do with my children is swimming and now that's over and we live by the beach but we'll never see it again and how will I ever play with my kids or have fun in the future and stop me from hyperventilating right now please!"

I'm paraphrasing.

Dr. Hughes takes a deep breath (bless his heart) and says, "Danielle, put sunscreen on and live your life. Go to the pool. Go to the beach. But be safe. And get a lot of hats." And then he reminded me that this is actually good counsel for everyone.

So in honor of my NEW PROJECT I am giving away two great hats so that I can do a little part in spreading sun safety to YOU. These hats both came from a great company called Coolibar. I love them because they are SPF 50 (regular hats can offer as little protection as SPF 10) and I don't know if you have ever tried to sunscreen your child's head but it tends to be a sticky mess when it's over and Rachael needs sun protection even on days when I want her hair to be cute. Hats are the perfect way to protect her head and high fashion at the same time. Win!

These are the prizes up for grabs. One will go to the winner of the "Name my NEW PROJECT" contest (we seem to have a front runner but I love hearing your ideas and it ain't over til it's over) and another one will be given to one random person who leaves a comment here.

One of the hats is the Sedona:

This is from the website:

Searching for a beach hat that’ll work with anything in your wardrobe? Our Sedona Hat is a natural choice, made from a durable weave that lends a dash of texture to your look. Like all of Coolibar's wide brim hats, it’s designed with coverage—and comfort—in mind.

Oversized 4" brim for maximum head and neck protection
Elastic internal sweatband for comfort and fit
Chin strap with toggle to hold hat in place
Lightweight, natural fiber/nylon blend weave
Spot clean
Rated UPF 50+

Basically... it's awesome and you will look totally awesome in it while you are being all safe in the sun rockstar-ish.

The other hat is a child's chlorine resistant bucket hat

Again from their website:

Here's a child SPF hat that's built for any kind of waterfront activity, from wading to swimming to poolside. Chlorine-Resistant Bucket Hat is lightweight, super soft, and fast drying comfortable enough to wear all day. These bucket hats are made of Coolibar's durable SUNTECT® fabric.

Extra-long flexible 2.75” (S/M) or 3” (L/XL) brim shades eyes and face
Velcro and elastic strap adjusts for growth
Superior chlorine and saltwater resistance
Durable aqua SUNTECT® fabric
Hand wash
Rated UPF 50+

The one I got for YOU is white and will work perfectly for a boy or a girl.

This is Rachael's go-to hat and I just ordered three more for her. She wears it every single day and IN the swimming pool and it still looks brand new. Here she is being all adorable and grown-up looking in her hat:

Isn't she beautiful?

That's totally not rhetorical.

Leave a comment to tell me how beautiful my daughter is!

Here's the thing though... until I move my NEW PROJECT to it's NEW HOME we have to deal with the constraints of blogspot so I REALLY need you to at least put your name on your comment otherwise we are seriously giving "Anonymous" the edge with an unfair amount of entries.

Leave your comment under this post. Contest ends Wednesday night and I will pick a winning name for the NEW PROJECT and randomly select another winner out of all the commenters and post the winner on Thursday.

Good luck and get to it!

**Oh, and quick note: I am sponsoring this contest. Coolibar has no idea who I am and hopefully they don't get mad at me for stealing their images.

The Next Step

2010-08-27T09:09:00.001-05:00

My creative juices are flowing! All two ounces of them. I am working on a new project that I am very excited about and it is going to require a re-design of this blog. It's also going to require an address change because I'm going to move out of blogspot.

The title of this site has always been cumbersome and even though I and my children know the reference, I think it imparts a certain... favoritism that is unintended.

So I'm working on decorating my new internet home and will hopefully be ready to launch within two weeks but I am looking for a new name and I am taking suggestions.

I only have one requirement. It must be available as a .com.

Here's how you can find out if your brilliant idea is available as a .com:

Click here: Go Daddy

Plug in your idea(s) into the place that says "Start your domain search here" and click "Go". It will tell you if the .com is available. If it is... then tell me your idea in the comments!

This new site will still be my blog. Everything will be still be there but it will also be a place where parents of newly diagnosed children can come to find information and connect with others if they would like. So I want the name to be personal but reflect a more global purpose. It needs to be easy to remember too! Here is one of my ideas: littlestwarriors.com.

Hopefully some of you have more than two ounces of creative juices!

Because I am excited and because I want a lot of suggestions, I am going to be giving away a prize to the person's whose idea I choose. I'll announce the prize later but you will love it!

Update:

I decided to go crazy and get TWO prizes! So... the winner of the "Name My New Website" contest will win something and then I will randomly select another winner from all who leave a comment. So even if you do not have a brilliant idea, that's okay! Let me know you were here and you will be entered to win.

I want you to want me. I need you to need me.

2010-08-26T15:13:00.000-05:00

I initially started this blog because I wanted to let people know what was happening in our lives.

This blog became a safe place for me to work through my more difficult emotions.

This blog is turning into a place where people come for information about the journey they are facing.

My favorite aspect of this blog is what it is turning into.

If you have a child who has been recently diagnosed with melanoma then CONTACT ME! I want to hear from you. I want to share our experiences, both good and bad. I want to be a resource to you and to point you to others who have walked this road before you.

Even if it puts my heart in my throat and brings up scary things for me it is one of the absolute BEST things to come of Rachael's diagnosis. To think that our path might help someone else pave theirs, or at least not feel so alone, is an honor.

Thank you for sharing your stories with me and let's talk.

Scattered (truly not kidding here) Thoughts

2010-08-26T00:06:00.000-05:00

I am drawn to this blog when I have emotions to work through regarding cancer. So, it is a good thing that you haven't heard from me in a month.

I was contacted again by another family with a child diagnosed with melanoma. I expect I'll be chatting with the mom soon but my heart is seriously in my throat. It's very strange to me that a year after Rachael's diagnosis I feel far more freaked out than I did in the beginning. Do not misunderstand, most of the time we just live our lives. I can't say "we don't think about it" because we do every single day. Especially with temperatures in the low 100's but we laugh, we joke, we discipline, we live. Most days I am confident that all will be well.

But some moments creep up on me and my heart pounds and I feel the tears come and I find it hard to swallow for the fear that rushes into my head. And hearing about a child with brain tumors has the ability to send me to that edge.

The kids started school this week which means order has returned to our house. Hello clean house! Oh how I've missed you! It helps that I hired a housekeeper who comes once a week but don't think that means I get to lay around napping all day. No way! Napping all day only happens on Mondays. On Tuesdays I am working right alongside her cleaning the refrigerator or closet. Tom just about cried when he walked into our closet and realized I had finally decided to donate the eight trash bags of clothing to Goodwill. He embraced me and said, "I never thought you would do it. I am so proud of you!" I wasn't sure if I should bask in the moment or be insulted.

I don't know why I have trouble getting rid of old clothes. I totally get that it is stupid and I DID overcome my emotional attachment to my 18 year old t-shirts and donate the stuff but not without consequence. Last night I dreamt that I went to camp and when I went to my suitcase to get dressed all my clothes had been stolen and I was forced to walk around camp naked. Aside from the dreadful "naked dream" re-occurrence, I think it is clear I have issues.

Anyway.

Yeah. So, school started and did I mention the temperature? Today it was a cool 102. And get this! They send these kids out to do physical education!

You know. I just had a brilliant brainstorm! I should offer to do a class on sun safety during PE. Oh boy! Wheels turning now!

Focus Danielle!

The second day of school Rachael is in the nurses office complaining of a headache and saying "It feels like my forehead got a sunburn." On one hand I REALLY don't want her to be a hypochondriac but the stronger emotion here is "Thank God she takes this seriously." So I wrote her a note excusing her from all outdoor activity until it cools down a bit and I'm pretty sure the entire staff breathed a sigh of relief. No one felt good sending her out in that sun, SPF 60 or not.

What am I going to say to this mom when she calls? She is dealing with a stage of this disease that I do not allow my mind to dwell in. I suppose we will just embrace each other. We are, after all, members of a pretty exclusive club.

I've never been here before and I'm ready to leave.

2010-07-22T01:59:00.032-05:00

I want a way to describe how I've been feeling the past couple weeks. I want a word, or an expression that really captures how it all seems to be growing and culminating in my heart. But I don't want to seem dramatic so a phrase like "I'm going into a tailspin," doesn't seem quite right but I am feeling very raw. The sorrow piling around friends of mine, and little stresses in my own life are really all catching up to me.

This started a little over a month ago while we were on a two week vacation in Maryland. Rachael ran a fever the whole first week and was on a Motrin/Tylenol rotation around the clock. After the 7th day I emailed Dr. H. and told him I was getting concerned. He called me and told me it was not that out of the ordinary and with no other symptoms it was probably a normal interferon thing. The next day Rachael got a headache.

It came on so quick and it was extremely intense and something weird happened in my brain. I couldn't disengage. It was the most scared I have ever been and I couldn't think or be terribly rational. I "know" a couple people online who have lost someone they love to melanoma and watching her suffer with an inexplicable head pain I just thought, "This is what end stage would look like." For the first time, I could imagine losing her and I just cried.

After talking to her team in Houston I decided to take her to an emergency room in Maryland for some blood work. I like to complain about hospitals that are not "ours" but this place was fantastic! I'm not sure if it was the look on my face coming in, her age and that I carried her in on a 100 degree day wrapped in a blanket or that I wrote "oncology patient" as part of her history but we have never been triaged so quickly. We got set up in a private room and as fast as her symptoms appeared.... they disappeared. So here I am with a team of very concerned doctors and a daughter who is being her normal, charming, goofy self! I wanted to go home. Shockingly, they wouldn't let me.

They said they needed to to do a CT scan and of course I know what they are thinking. Brain metastases. I KNEW she did not have a brain tumor. She had just had a PET scan done six-weeks earlier and it was clear and I just knew it was not that. And one would think I would be happy for that test to rule anything out but I did not want her to have it. It was like I knew it couldn't be that, but I didn't want to be proven wrong. I didn't want to know.

While we're waiting for results a group of five people came in and I'm checking them out and realize they are all there to get an IV in her. One person's job was to hold her arm down and she's looking like, "What is all this?!" and I'm all, "Ya'll can just give her some space, she's fine with needle sticks." She realizes what they are doing at that point and goes, "Yeah. Can we just get this over with?" Cracked the whole room up! So they tell her to "look away" and I say, "She likes to look," and they try hard to not roll their eyes at me. She watches and chats and laughs and when the needle goes in she says, "I didn't even feel that one." One of the nurses says, "We just got beat up by a four-year old. Just wanted to be prepared."

The results from all her tests came back and she was diagnosed with.... drum roll.... "Acute Sinusitis."

Yes, yes, ladies and gentlemen. My daughter - using cutting edge brain imaging technology and blood work - was diagnosed with a sinus infection. After I nearly burst out in tears in relief I felt a bit dumb. Until my husband reminded me on the phone later, "Honey, she's a cancer patient."

Yeah. Yeah. She is that.

It's part of the "new normal" I talked about in my last post. Great medical care is wonderful and I suppose an advantage to have but a year ago, with her symptoms, I don't even know if I would have taken her in. Doubtful. And I seriously doubt she would have been given a CT scan or had an IV placed. But a year ago doctors' minds would not have immediately jumped to brain tumors either. It is hard to explain how much I hate that. I just wanted to grab her and run home and I kept saying while we were there, "I'm sure it's nothing. I wouldn't even have brought her in if her symptoms had gone away just 30 minutes earlier. She's totally fine." I was right and I'm so glad but they were worried. And I like it when it's the other way around.

This same week one of my friends at the RMH lost her son. Her pain is ... overwhelming. And people kept facebooking her things like, "He's in a better place." I found myself SO ANGRY for her. How DARE anyone tell a mother that ANYWHERE but HER ARMS is a "better place". Of course heaven is a better place but is that where you want YOUR child? Someone even told her, "God needed Him more." Fuck that! SHE needed him. I'm not angry at God and she's not either but these people make me want to hate Him. One guy said to her at the funeral, "You must be so relieved." It took everything in her to not punch him. Not sure I would have tried so hard.

My closest friend in Houston is preparing for her daughter's brain surgery in a couple weeks. This mama does not worry. She has total and complete faith that God will heal her daughter but brain surgery. She's fighting it, but she's scared and I hurt for her.

One of the families we were close to during our month in Houston has a 10-year old boy with a type of brain cancer. In April he was released with no evidence of any cancer cells in his body. His parents celebrated and they enjoyed two wonderful months getting back to "normal". They went in for a routine check-up. Much like Rachael goes in for routine check-ups and not only is the cancer back, it's growing at an alarmingly rapid rate, it has spread to his spinal column and is inoperable.

In a matter of weeks they went from "cancer-free" to praying for a miracle. Because that is what it will take. A medically unexplainable miracle and do we believe that can happen? Yeah. Are we praying it will happen? Of course. But when the only thing standing between your child and death is a miracle... I'm just having a hard time with it.

So all this to say, when I started noticing that one of Marc's pupils was a bit larger than the other I grew a little obsessive. And when I took him to the doctor yesterday (the same wonderful doctor who first removed Rachael's mole and immediately suspected it might be something more), Dr. D. said, "It's probably nothing," and "I have a good feeling about this". But when he pulled up a medical website listing Marc's symptoms, one of the things it said on that screen is "Need to rule out neuroblastoma" and Dr. D saw me start to panic.

I am NOT a "panicker". I DON'T worry. I'm just not that mother who rushes her kids to the doctor every time they cough but after the month we have had I found myself fighting tears when I read those words. Dr. D. continuously reassured me but we do have two MRI's scheduled "just to rule anything out" on Friday and Monday. It's nothing. I'm sure.

Today Amanda called me. She's watching my kids this summer and Marc had a bad headache. He was crying and in a lot of pain and that panic rose up again. I texted Dr. D. and said, "Should I take him to the ER?" and he called back and continued to reassure me. But on the way home I took Marc to the eye doctor. He said that yes, he does have one constricted pupil but the way they react to light is the same - which means it's within the realm of normal, his "opto-map" showed nothing but health and Marc has 20/20 vision. He was VERY thorough and compassionate and I might just have to embrace the "worried mother" label for awhile.

Amanda says I have to give myself permission to be concerned. I don't know why it is so hard for me to do that. It just seems so dramatic and unnecessary to look at a child with a headache and immediately start thinking about cancer but God, if I haven't become that mother.

It feels like weakness.

Lately though, I feel emotionally weak. I cry easily. I have a hard time concentrating. I'm scared. And I really hate all those feelings.

Normal

2010-06-21T09:37:00.000-05:00

About a month ago, I was talking to someone about Rachael and some of the things we've been through in the past year. He looked pretty amazed and said something along the lines of, "People who are not in that position cannot even imagine what it would be like." I responded, "Actually, I think you'd be surprised that it doesn't really take long at all to adapt and modify your vision of normal."

Soon it will be a year that we have had cancer in our lives and that truth still amazes me. Rachael's and our family's ability to bounce back quickly from cancer interruptions is a divine gift, of that I am convinced. We do not waste time dwelling on what is hard with this disease, we put it behind us and our "normal" becomes just that. Normal. Which is why it is sometimes difficult for me to hear that question, "How's Rachael doing," said with such concern and purpose. Because you know, usually she is just fantastic but sometimes what I really want to say is, "Great, but let me tell you about Marc." Or, "Do you want her? Because she's acting very bratty today!" Or simply, "Why do you ask?" Because she HAS been through a lot but our thoughts do not revolve around this disease and the little daily ways it affects us are dealt with and have been seamlessly integrated into our lives. To have that "normal" interrupted by reminders, albeit compassionate and lovely gestures of concern, can sometimes feel a little odd.

Which is why our medical visits are becoming a little harder than usual, I think.

Heading back to the Ronald McDonald House and meeting new friends who are struggling far more than we ever have, to the point of fighting for their children's lives is painful. Sitting and crying with my friend Regina as she struggles with God and wonders how long to encourage her 19-year old son to fight was heart-wrenching. Seeing sweet Gabi seize and finding out when she got to hospital she didn’t stop for 7 hours was horrible. Rachael’s battle pales in comparison but still interrupts and invades our lives at best and can sometimes hurt an awful lot. I hate being reminded just how serious cancer specialists take her diagnosis. Funny... I generally cannot stand dismissive doctors but I miss the innocence of that being my biggest medical concern. Now I’ve seen my daughter wrapped like a papoose and put through at PET scan machine after having her veins pumped with very painful radioactive chemicals so they can make sure she doesn’t have cancer growing in brain.

She doesn’t. For now.

And there are others who escaped and get to go home too. Most of the people I have met actually do get to continue on and leave the daily reminders of their disease. They get to face their normal. I wonder if they go through a culture shock of sorts like I did. I wonder if returning for check-ups is like coming home for them or if it feels like they are in a foreign land they once lived in but now feels strange. I wonder if I am the only one who can physically feel the emotional temperature of the RMH and hospital if I spend any more than 24 hours there.

I wonder if the “new normal” will ever stop feeling new and just go back to normal.

Let's not even get into that time I had uncontrollable and echoing gas while sitting on the gym floor during youth group.

2010-05-01T23:10:00.000-05:00

You know how some moments in time pack such a punch that they remain with you long after most memories take flight? For me, there was that time when I was five and was picking my nose and apparently enjoying the fruit of my labors when my Uncle LeRoy caught me and started running through the house yelling, "Danielle doesn't need dessert! Danielle doesn't need dessert! She's already had her boogers!" Actually, come to think of it, Uncle LeRoy did a lot of things that lodged themselves into my long-term memory like telling me that if I play with my belly button it will "come undone" and all my air will come out. I had the World's Dirtiest Belly Button for years. And my first fart joke. (What planet do they come from? Uranus. *confused look from the 5-year old* even after repeated pleas of "Get it? GET IT?!)

Once when I was about four, my mom made oatmeal for me. That was bad enough but when I looked in my bowl there were little bugs. I complain that I don't want to eat it and she says I have to eat it. I go back and stare at my bowl with bugs in it and decide to go tell her that there are bugs in my oatmeal. She tells me that they aren't bugs, they are spices. Once more I go look in my bowl and this time, knowing I'm treading on thin ice I approach her again and say, "Mommy? Do spices have legs?" Haha!! Do spices have legs? It turns out that spices do NOT in fact have legs and I received my 89th apology from my mother for that incident just last week as a matter of fact. I told her I'm still thinking about it.

I did however, forgive her for hiding my Easter basket behind the couch one year. The couch that backed up to the big window that faced East. That was the year we weren't allowed to look for our baskets until AFTER church. Somewhere out there is a picture with a pathetic looking me trying to smile for the camera and holding a basket full of melted bunny.

Ah memory lane....

Once when I was five or six, mom let me bake cupcakes with her and I really wanted to put them in the oven myself. After the huge process (huge when you are little and can't wait to eat a cupcake) we opened the oven and I went to put them in and as I got closer I freaked out with the heat and totally flipped the pan upside down on the hot oven door. As an adult, I don't know who to feel more sorry for. It was a pretty pathetic moment for me but my poor mother had to clean the whole oven and make a new batch of cupcakes while undoubtedly listening to wails.

I will never forget when I was twelve and trying very hard to be sophisticated but struggling with the simple act of walking having grown to my adult height of 5'10". Yes. At twelve. What you need to know at the outset of this story is that we went to a small-ish church where everyone knows everyone and especially me and my family as we were very active and my brother and I were the only kids who were faithfully there every week. Also, my family always sat in the front row. Our names might as well have been on the pew. Oh, and on this particular morning, both my mom and dad were singing in the choir so they are in their robes, facing the congregation.

I am late coming into the service and everyone is standing and singing. I am going down the middle aisle and I can hear the song is just about to end and I don't want everyone to sit and there I will be walking down the aisle for everyone to stare at. I'm twelve and that would be humiliating. So just as the song ends and everyone takes their seats I decide to run the rest of the way and at that moment.... that moment when it is silent and everyone has sat down.... at the worst possible moment imaginable... as my 5'10", 100 pound frame is gangling down the aisle at a light sprint... THAT is when my purse strap catches on a pew back.

My legs kept going. The rest of me didn't.

As I'm laying there flat on my back having just fallen (literally) short of my front row seat and my parents are in the choir loft facepalming themselves and the entire congregation is trying unsuccessfully not to laugh at me I remember very distinctly praying like never before that I believe... I BELIEVE in the rapture and Please God Let It Happen. Now.

I don't know how much these little memories shape who I am but these and moments like them... good stuff too... will probably be all that's left if I one day end up with Alzheimer's. I always wonder what little snippets in time will stick with my children when they leave childhood behind. There are many things I am very intentional about in the hopes that when they look back they will say, "THIS was what my childhood was about", but I know that there will be other moments that are so unexpectedly absurd that they will sheepishly recall in a couple years and be able to laugh at in about thirty. I think one of those moments may have just happened to Rachael tonight.

We went to a baseball game which is always a great experience. They really make it fun for the kids and the weather was hot but it was so nice to be outside enjoying America's favorite past-time as a family. The kids were sharing a bag of peanuts and that's a good time because you can just throw the shells on the ground and what kid doesn't dig sanctioned littering? We went with some friends and the grown-ups were sitting behind the kids and suddenly I see Rachael launch a peanut... not the shell... the whole peanut and this thing FLIES out and hits this guy right in the head! There weren't that many people around us but boy if she didn't have perfect aim. He looks around and I can tell he's not thrilled. I said, "I am SO SORRY (he's now looking incredulous that a woman did this) but my daughter threw that nut!" He immediately softened but I made Rachael get up and go over to apologize. To her credit, she did right away and he said, "Okay, but don't do it again," and she came back to her seat and lost it.

It took all I had to not laugh because even though she was probably more embarrassed than she has ever been in her life I know she probably just made one of those weird, small, random permanent memories and one day she will be sitting there with her kids eating peanuts and it will hit her: "I totally nailed that guy in the head."

And then she will laugh too.

Mish Mash

2010-04-28T01:37:00.001-05:00

Remember a month ago I said I wouldn't blog about Marc anymore? Yeah, well, that sorta stifled me. Because after I said that I found I had SO MUCH to say about him but I didn't want to be a liar. Like that time I said that our "cancer journey is over". Haha. That was a good one. But now my desperate need to chronicle my boy's quirks has subsided again so I'll just blather on for a bit about our month.

I hate to admit this here because I would love to maintain this image of the way I looked when I was in my 20's, at least online, but I seriously need to lose some weight. I also found that changing a light bulb left me out of breath and sore the next day. So not kidding. Enter Amanda who was like a hopped up chihuahua with what seemed like a diminishing vocabulary containing a few nouns, some adjectives thrown in for color and an increasingly annoying repetitive refrain of "Zumba, Zumba, Zumba!" I pretty much rolled my eyes for the most part until I saw this really skinny, hot woman in church one day and realized it was Amanda. So I went to Zumba.

I think during my second class I almost died. She thought it was really hilarious you know, watching me clutch my chest with my one good arm (the other one was numb) and declaring that I truly hoped my impending heart attack and death would not mess with her work-out but I somehow managed to live and kept going to classes. I really hated it. Every time I went I was all, "I hate Zumba and I'm not coming back," but I had bought a stupid 10-class punch card and I really hate to waste money even more than I hated Zumba so I continued and a weird thing happened on my way to 10 classes. I started noticing the moves getting easier and my body starting to change. One night, I woke Tom up from a dead sleep and said, "You have to look at this! Mama has guns!!" So now I Zumba three or four times a week and though I don't think I'm annoying it might just be because almost everyone I hang out with goes to Zumba too. (Insert bad joke about drinking kool-aid here.)

Moving on.... I've never written about my work situation on this blog and I'll probably keep it that way (see, there I go again, setting myself up to be a liar!) but I will say that I work fewer hours and make more money now than I have in three years and I am LOVING IT! I haven't gotten a great rhythm down yet but Tom is working and I am working and we have been through some scary times financially which makes this moment all the sweeter. And I have my weekends back! I still get giddy when I think about Friday and Saturday night because for three years I delivered pizza those nights. And now I can go to the beach with my kids at the last minute or catch a movie.

One thing I really wanted to write about was our awesome Easter but MY GOOD FRIEND AMANDA REFUSES TO SEND ME THE PICTURES. Maybe that will do the trick.

Speaking of pictures that are seriously overdue... this one was taken on February 6th.

And many more, baby. And many more.

This was so hard to write and will be the last I say on this subject for now.

2010-03-24T23:35:00.000-05:00

After my last post I received an email from a mom who saw her son in mine. Parents of children like this tend to gravitate towards and cling... even momentarily to one another because the feeling of relief that comes from knowing you will not be judged is nearly overwhelming. We speak the same language... one of understanding and not advice.

People like this blog because it is "real". This might be a bit too "real" but facing cancer is easier than the uncertainty of what to do to help Marc. Everything might turn out just fine but I've come to some realizations lately that have driven me to seek outside help once again. Let me be clear and say that Marc is not violent. He does not hurt other kids, his sister or our pets. He just has no judgment, virtually no self-control and very little empathy. He's always been tough, I just thought as he matured, certain things, like being able to trust him for short periods of time, would happen. That has not happened and I now have a nearly 9 year old boy who most times needs near constant supervision. That feels overwhelming. His issues go beyond this but I love him and .... this just isn't the forum to catalog our struggles.

With cancer everyone rallies around you and gives your child gifts.

With behavior problems people shun you.

With cancer people say things like, "I don't know how you do it. You are so strong. I don't know how I would face it."

With behavior problems people say things like, "Well, I just don't allow that sort of thing in my house (as if "allowing" it is the problem)." And, "Well have you tried this thing (that of COURSE we have tried because we've tried just about everything) because that's what we did and our child never did it again (which is truly laughable in Marc's case)."

With cancer people pray for you.

With behavior problems people judge you.

I'm not saying cancer is a walk in the park but the support is unlike anything I would have imagined. That is HUGE. Sometimes I feel so alone with parenting my son. So when I meet someone who struggles like I do, we cling.

Janine, I get you. I get your fear and your frustration. Hugs and prayers.

Flashback

2010-03-15T16:37:00.000-05:00

I feel like I have a weight on my chest right now. No. I mean, really. There is a heaviness that has settled into my chest and it HURTS.

I haven't written much about Marc here but I used to have another blog where I wrote quite a bit about him. This is rather long but was a very typical day in our lives. I wrote this three years ago... almost to the day.

Oh hard, hard, hard.

This morning Marc woke up with a chip on his shoulder. He screamed at Rachael and told me about 6 times every thing she had done wrong to him. Let's see... she dared go to the bathroom when HE needed to go and wouldn't immediately get off the toilet as soon as he announced his need. Of course he screamed at her which made her want to stay put. Then she "stole" his plastic coin. Of course by the time I was hearing about this he was holding his coin and still screaming at her about it. Then she spit at him. Spitting is wrong of course but he had been SCREECHING at her for about 20 minutes. I felt like spitting at him!

I stayed extremely uninvolved and emotionally detached. This was driving him bonkers as he wanted heads to fall for the horrible things she had done to him in the three minutes they were up before me. It was hard to offer empathy to him when he was screaming yet HE was holding his "stolen" coin, Rachael clearly got off the toilet and well.... yeah, the spitting was wrong but it was still hard to offer empathy with that.

So I didn't. I did however offer Rachael a bit by saying things like, "Are you okay? It hurts my ears to be talked like that. I'm sorry." This infuriated him and he continued to rage on and on and then she kicked him. This was the last straw for him. He DEMANDED JUSTICE! He said, "Aren't you going to go talk to her and put her in time out?!" I said "No". He asked why not and I told him that it was hard for Rachael to be screamed at so much and left it at that. When she came out of her room (where she ran to hide as soon as she kicked him I said to her, "I'm sorry that Marc is screaming so much at you, it makes me sad." She agreed and then I said, "Rachael, even when he screams at you it is still wrong to kick." She agreed again and when he went to brush his teeth she said, "Mommy, I'm sorry for those things I did to Marc." I gave her a hug and told her to go tell Marc and she did. Marc told her he didn't like her now that she's not a baby anymore and the only way he will be her friend is if she pretends to be a baby forever. She giggled and said, "No.... let's be friends now!" Marc continued to hold his grudge and insist he doesn't like her anymore but her conscience was clear so she was joyful.

So my plan to stay as uninvolved as possible is working brilliantly for my daughter.

This thought is scary but sometimes I wonder if Marc is sacrificial. I don't know how to explain it but I am learning so much through him and yet the lessons only seem to apply well to his sister. I just pray it is taking him longer and this isn't glimpses of his future: angry all the time, cataloguing every wrong done to him, believing he is justified in every action, never taking personal responsibility. I know he is not even six yet though and it can take time. I truly pray that it is just immaturity.

So, through all this we're getting ready for school. I said to him, "Marc, if you get ready for school on time I will walk you." Getting him to stay on task every morning is hard. I said, "What did I just say?" He said, "If I get ready on time you'll walk me" all bored like. So, he starts playing checkers with his sister. Actually, he starts screeching at his sister that she is "stealing" his checkers. Meanwhile he has double the amount but that is beside the point. I tell him, "Five minutes until you need to leave," and he continues playing. So, I make his lunch and go get his shoes and put them on for him and tell him to brush his teeth (which is what I told him to do right before I said "Get ready and I'll walk you" but he never did). He comes out and I put his backpack on him and tell him that I love him and wish him a good day. He starts wailing, "Why aren't you walking me to schoooooool?" I said, "I told you that I would walk you to school when you got yourself ready on time. Instead you chose checkers even after I reminded you." He's sobbing now and I just calmly said, "Tomorrow I hope you are able to get ready before you play so that I can walk with you." (**Side note: The school is across the street from our house and he crosses with a crossing guard. Very close and safe to walk alone.)

So he left utterly miserable this morning and I am fighting the feeling of sobbing myself because once again, he is very unhappy, totally blames me for it and will probably have a difficult day. If I did nothing wrong, why do I feel so guilty?

I'm not going to write about what happened today... yet, but let's just say it's not getting easier. It's getting harder. We're seeking help but all those things I feared are not going away. I don't think it was immaturity.

Growing up is hard.

2010-03-08T23:49:00.003-06:00

When we first moved to this city we met a family who has a little girl one year older than Rachael. Rachael was two at the time and this little girl was three and there was instant love between the two. Over the past four years that little girl has spent a lot of time in my home and they bonded in such a beautiful way. If you have raised a child you understand how almost unheard of it is for two children to spend hours... HOURS, day after day with one another and never fight. They could just look at each other and start laughing. They GOT one another and it was a privilege to witness.

This girl's mom and I were friends too, and now we're not. There are a lot of things I did wrong and can accept blame for but ending the friendship was not my decision and I hated how it went down. The conflict involved our spouses and Tom, though willing to forgive, did not want to continue the friendship with her husband. She demanded complete reconciliation as a condition of our friendship continuing and so it ended. And with it, she also ended the girls' friendship. And this broke my heart.

I didn't tell Rachael that she would never see her friend again and for the past two months I have heard Rachael talk almost daily about this little girl to me, to her brother, to her other friends, to her dolls. She brings home artwork from school with this little girl's picture on it and stories of her love for her. I have just tried to stall her and hope she'd forget but tonight on the way to ballet I was once again encouraging her to make new friends and she once again told me that she misses her friend and wants to see her and I decided it was time to start her down the painful path of letting go.

I was gentle and went slowly but essentially told her that she wasn't going to see her friend anymore. She just didn't understand. I tried several angles that I was hoping she would just accept, "She's really busy", "You are in different schools and churches now". But she just kept saying, "But why?" I reassured her that I know her friend loves her and misses her too but sometimes people have to move on. She said, "But we've been friends a REALLY long time." She kept coming back to why, why, why and none of my lame reasons were working so I finally told her the truth.

"Rachael, it's because her mommy doesn't want to be my friend anymore and so she says her daughter cannot be your friend anymore." Rachael took a moment to absorb that and the truth of the situation began to set in. You should have seen that child's face. It broke my heart more than anything we have gone through in the past 7 months - by a long shot. She said, "But that's not fair." I said, "No, it's not fair and I think it's really mean and I am so very sorry sweetheart." She didn't wail and carry on but the tears just silently started to fall down and the grieving process began.

She's only six but her heart... for the first time... has been shattered. And I don't know what to do.

Except cry with her.

I wish I may, I wish I might.

2010-03-01T21:14:00.006-06:00

I would trade all the cool things that have happened to us as a result of melanoma in a moment for it to have never happened. And that includes the Granddaddy of all Cool Things That Happen As A Result of Cancer, but we can't change that it happened so come on in Grandpa, get comfortable and don't mind the squeals and hugs and general party atmosphere.

Make-A-Wish came tonight!

This awesome couple, Robert and Rebecca, who volunteer for Make-A-Wish (would that not be THE coolest volunteer gig ever), came over tonight and asked that incredible question of Rachael, "If you could do anything, have anything, go anywhere, meet anyone, what would you want?"

We'll get to Rachael's answer in a moment and trust me folks... you won't want to miss this.

First though, I heard back from the study nurse today regarding the dosage of the interferon we've been giving her. Let's just say, "Thank God Grandma and Grandpa invited the kids over to their house sooner rather than later and that Grandma is a nurse and reads labels of medications she is asked to administer." Yes, Thank you God. Grandma caught a mistake and again, THANK YOU JESUS, it did not disqualify Rachael for the study. She has been getting her medication diluted by about 1/2 so I have some concern now about what the symptoms might look like next week when she is getting the correct dosage but at least we caught it early. They will document the mistake and we will be allowed to continue. So that was good news and thank you for your prayers!

Back to the fun stuff. Last week I was contacted by Make-A-Wish to set up a meeting where they could interview Rachael. Before the meeting I chatted on the phone with Rebecca and asked her if I needed to prepare Rachael in any way for this meeting. I have not once mentioned Make-A-Wish to her because I didn't know if it would happen or what the process would look like. So I told Rebecca tonight that I would just let them tell her why they were there and let it all be a surprise. Sounds fun, right?

For those of you reading who have not raised a child and may one day, let me bestow a little free advice. Never predict what your kids will do. You will be wrong and feel dumb. That's your PSA for the day.

So Robert and Rebecca, or R&R show up and we tell Rachael, "Guess what? We invited them over for you and they have something cool to tell you." She's all, "This is because of my cancer, right?" Can't get anything past that one.

We get comfy and they start with some boring paperwork about who we are and what my middle name is and Marc pretty much answers all of these questions. Except my middle name. This somehow surprised both children that I could have such a thing. Anyway, we get to the part of the interview where they ask Rachael about 20 questions about herself.

What's your favorite color?
Singer?
Store?
Music?
Movie?
Celebrity?
Sport?
Junk Food?

Wanna know her answer to that one? "Hmmmm. Wellllll. Cans. No! Iron! I like iron!" Get it? Get it?! JUNK food? She'd never heard the term before so she was thinking scrap metal. Is that not hilarious?

So she starts wearying of the inquisition and is getting all, "I DON'T KNOW WHY ARE YOU ASKING ME ALL THIS STUFF?!" when they lay the Big Daddy of questions on her:

"If you could do anything, have anything, go anywhere, meet anyone, what would you want?"

"Heaven. I want to go to heaven right NOW!"

My daughter's greatest desire, most heartfelt wish is to be with her family all together with her Jesus. And seriously folks... let's get on it! NOW!

It was a beautiful moment of laughter and you should have seen the looks on R&R. Pretty sure they've never had that particular request before. We explain to Rachael that though heaven would be the ULTIMATE wish, Make-A-Wish really doesn't have the ability to grant that one so what might her SECOND greatest wish be?

At this point she got super shy and almost weepy and just totally focused on how she just wants her whole family to be together and the only thing she can think of is heaven and oh please stop asking me because I'll just bury my head in my mommy's tummy and mourn the wish that you can't give me.

Then Marc pipes in, "OOOOHHH! I KNOW!! I KNOW!!! I want to LIVE at Disney FOREVER!!"

Okay children. We are really not getting the concept of Make-A-Wish here.

R&R are just sitting there sorta stunned and say, "We can finish the paperwork and you can talk about it and tell us in a few days. It's no rush, really." Rachael is just looking shell-shocked and practically whimpering and Marc won't stop with the whole moving to Disney FOREVER madness and so we're all, "Okay, let's just finish the paperwork."

After a bit though, Rachael starts to come to life again and when I whisper to her, "You need time to think about it," she whispers back, "No. I want to go to Disney." I say to her, "This isn't pretend baby. These people really make wishes come true for kids who have cancer." She seemed intrigued. Honestly, I think it was all just a bit surreal and unbelievable and it wasn't computing.

They told us a little of what we can expect and one of the things we had no idea about is that a limo picks you up at your house to take you to the airport. Let me just invite anyone in the area right now, if you want to come see us off for that party you are invited! A limo! Marc says, "Finally! I have been waiting a LONG time to ride in a limo!" I'm so glad for that kid that he finally is getting his due in life. After R&R left we heard the kids talking in the bathroom and Marc's going on about the limo. "Yeah, there's probably going to be a disco ball inside of it like the cash cab!"

After we had gotten all the business out of the way I asked Rachael to get her Beads Of Courage to show R&R and I told them all, including Rachael, a story....

When Beads of Courage featured Rachael on their blog we were contacted by Colin Smith, who is the Program Director. He told me that he had been contacted by one of their artists who wanted to make Rachael a special bead and asked me if there was anything she might like. I wrote back and told him that we were hoping she would get to make a wish and knowing her, she would want to go to Disney. Maybe the artist could make something to commemorate that.

About six weeks ago I got a package in the mail from Colin and inside was a bead so beautiful I knew it would become one of Rachael's most treasured possessions. We will not put this bead on her chain with her other beads but we will make it into its own special necklace for her. She can wear that necklace when we go to Disney but tonight we wanted to share that moment when we gave it to her with R&R.

Yes, I would give it all back to have never learned how serious melanoma can be, but when I want to scream "CANCER SUCKS" we will have no choice but to see the blessings in it. Thank you to people like Rebecca and Robert and Colin and Sharon (the BoC Artist) for blessing us. You remind us that God is good. All the time.

When they were walking back to their car tonight Rachael turns to us and says, "They are my Fairy Godparents!"

SNAFU

2010-02-27T17:11:00.001-06:00

The kids spent the night with their Grandma and Grandpa last night and this morning I got a call from my mom because we switched Rachael's interferon shots to Saturday and mom was giving it to her. I gave her the instructions last night and so this morning she called to question it because the mixture of sterile water with the powder was different on the label than what I told her over the phone.

Wha..?

I have urgent messages to her study nurse but it's Saturday and I think I'm just going to have to wait. I have a sinking feeling though that we have been giving her too diluted medication and that this might disqualify her for the study she is in.

This means that moving to Houston for a month was for nothing. This means that if we decide to continue with the medium-dose of interferon she will no longer get the type I wanted her to get. This means the study would no longer pay for the medication and we will have all the co-pays. This means that she would have to get 3 shots a week instead of one and the highs and lows of the medication will be more pronounced. If what I fear is true, it means that the side affects she has been feeling came from a medication that was diluted by HALF.

I am praying it's not true and if you would join me in prayer that even if it is true we will be allowed to continue the study and that Rachael will not suffer for the mistake. We are now 11 shots in.

I am worried and trying very hard to be patient as I wait to hear back.

If she can't be smart, at least she's pretty.

2010-02-19T22:41:00.000-06:00

Two weeks ago I got a note in Rachael's backpack that said, "Please work with Rachael on her A.R. books. I know she can do it!" Apparently she took her first one and only got a 20%. I was caught between annoyed and worried because I really didn't think she was struggling that much but then again, it's kindergarten! I mean, come on! I never got a note home like this for Marc and I know he's really smart but I didn't think Rachael was that far behind. I didn't even remember Marc doing A.R's in kinder but I figured it's because he didn't struggle so it never even came to my attention.

So I asked her where her A.R. book is and we practiced a few times. The next day she comes home and had made a 100%. I was thrilled! My child might have to work a little harder but with practice she'll be okay. Whew!

Today I had to go to the school for something Marc related and I run into Mrs. H., her kinder teacher and after a couple pleasantries I say, "Practicing the A.R.'s really makes a difference." She agreed and reminded me that the tests are every Tuesday and Thursday and please remember to send the book back. I say to her, "Okay, I'm glad you said that because I really need to understand what's happening. Does she get a new book each week?" And she said that yes, after the test she can pick out a new book. We asked Rachael if she had her new book as I didn't see it and Rach said she didn't so we all head into the classroom to find it. On the way there I say to Mrs. H., "Is she really that different than how Marc was?" He had Mrs. H. for kinder as well and he was very smart, even then. She says, "Don't worry about it. It's a boy-girl thing." This made no sense at all to me.

So we go into the classroom and she's explaining that the book Rachael returned was her library book, which is "just for fun" but that her A.R. books need to be on her level. I'm a bit confused by the whole thing to be honest, still just flabbergasted that my child is struggling like this when Mrs. H. says, "Rachael is the only one who gets two books at the library. The other kids only get one but she gets the A.R. and the fun book." At this point I'm about ready to cry and I say, "Is she really that far behind?"

Mrs. H. looks at me incredulously and says, "Danielle, she is my BEST reader! She is the only one who QUALIFIES to take the A.R.!"

I just had to laugh and laugh! The funniest part to me is when I was all worried that she was so much farther behind where her very smart brother was at that age, Mrs. H. was trying to reassure me that it's okay that Marc wasn't as smart as her. You know, it's the difference between a boy and girl so I don't need to worry about him. Hilarious!

If I had taken a bit more time to think the whole thing through I might have figured it out on my own. A.R. stands for "Accelerated Reader".

This might be normal but I don't like it.

2010-01-30T01:48:00.001-06:00

I don't know what to do about Marc. I just struggle so much with him and as he gets older I know less and less how to help him. I don't know if he is just a normal 8-year old boy or if there is really a problem. He doesn't listen at all. He has an excuse ready at all times. He is impatient and his anger gets out of control to the point where I keep Rachael away from him at times. It's not that I think he will inflict real harm on her, it's just that he might throw something in anger or just be too rough. His anger is fierce and irrational and quick.

He tells us all the time that he no one loves him and everyone is against him. Honestly, it feels manipulative. I'm just having a harder time caring that his feelings might be hurt and just wanting him to to take a little responsibility for his actions, listen more often and calm down.

Tonight the stress of it spilled into my evening with Tom and it spurred an argument at first which is incredibly rare for us, and then a heartfelt talk. And I cried and cried and couldn't stop the stupid crying, also rare, and as a matter of fact I'm still sitting here crying two hours after he has gone to bed.

And I can't even tell you why and no mother, I am not about to get my period.

Sigh. There are some things I guess I can't really blog about. There are peaks and valleys in a marriage and I guess we're going through a valley. I expect it to get better it's just for the first time, I don't know what it's going to take.

Have you ever gone through a valley without a map? How did you navigate out?

Emma

2010-01-29T08:11:00.000-06:00

Please pray for this family. Their baby girl is in her last days...

Take THAT Angel of Darkness!

2010-01-26T17:28:00.004-06:00

Saying "R.I.P Cancer Journey" is going to be somewhat like Bush saying "Mission Accomplished!"

Fridays are "shot days" and are now officially Rachael's least favorite day. She told me last week, "I wish every day was Monday!" Yeah. Me too! Except not.

Giving the shot is getting a little easier for me but they hurt like the dickens for her. The needle going in doesn't hurt so much, it's pushing the medication in that stings pretty bad. We numb the area ahead of time for about two hours and I give her Motrin an hour beforehand but it's still this weekly looming Awful Thing that just continues to remind her that she had cancer.

And then this weekend she spiked a 103.5 temperature that went down with lots of medication but didn't return to normal for two days. Oh, and there was puking. These are just side affects from interferon. Sunday when she was still feeling pretty lousy she was saying again how it's not fair that she is always the one to get hurt and get shots and fall down and get cancer. What can I say to that? "You're right. It is totally not fair." I remind her of God's goodness and that He certainly will use this in her life. She said, "I wish He gave it to someone else!" I asked her, "Rachael, who would you give it to?" This thought had never occurred to her. She just stared at me and then miserably said, "Nobody."

She is so precious.

But then she suddenly brightened and said, "I know who I would give it to!" I braced myself expecting to hear about a bully in school or, you know, her brother, but she looks at me with this radiant smile and says, "I would give it to Satan!"

Me too baby.

It's a self-induced problem but I'm going to whine about it anyway.

2010-01-24T09:40:00.000-06:00

There was a really wonderfully magical time between returning from Houston and before I returned to work where I got to be a stay-at-home mom again. I was pretty shocked to discover that not only did I love it but I really, really miss it and wow! I'm actually pretty good at it. My house was spotless folks. I mean, ceiling fans clean, light fixtures washed, laundry room mopped clean. It was exhilarating in a way that could only suggest I must be getting old or am developing a latent case of OCD. But my kids were better behaved, I was enjoying them more. I just started to feel in control of my household duties for the first time in over two years.

So it was with no small amount of dread that I had to go back to work. And you know, I like my job and I like the people I work with. It's just that I don't want to be in the position I am today. Today I am sitting in a house that needs cleaning in a bad way because we are having Bible study here tonight. I could have come home each day from my job and spent more time cleaning (because I spent some time everyday) and I could have worked for a couple more hours than I did yesterday but I didn't do those things and now today I must pay the piper, suck it up and clean.

Yesterday Rachael ran a high fever all day long and today the fever is gone but she's puking. It's interferon, I'm quite certain but if was a SAHM again I would be focusing solely on laying on the couch with her and reading books or watching mindless t.v. because all of the house stuff would be done.

I fully get that I am a little lazy. Other women don't spend time on their computer or watch t.v. or movies at night. They cannot relax when the carpets need to be vacuumed. For me, the messier it is, the more I shut down and when I can hold it together I get way more energy. I'm not proud of the fact that I don't juggle working and maintaining a clean, well-oiled house well.

Alright. Enough procrastinating. I'm going to put on some loud music and get to work.

Empathy hurts.

2010-01-20T00:15:00.000-06:00

This post has nothing to do with my family. Nothing to do with Rachael or even remotely related to cancer. My heart is so very heavy tonight. I want God to be near. I want answers to problems that do not have clear questions. I want things to be right and I have no power.

I am longing for peace and for the right words to say and for broken hearts to mend.

There WILL be a day with no more pain.

That day is not today.

R.I.P. Cancer Journey. You sucked a lot and we won't miss you.

2010-01-17T00:25:00.002-06:00

One nice thing about posting every day or so is I don't have to remember what I've done since posting last. A lot has gone on in the past two weeks and so it is becoming increasingly hard to update in one nice tidy post. I've been thinking about this blog and why it was started... to chronicle our journey through cancer. I'm not sure exactly what direction I want to take this journal in right now but I do know it will have to shift.

A little over a week ago I went back to Houston to see Rachael's oncologist and we had a very interesting conversation. Those of you who know me know that I am not a worrier. I'm not sure if he expects me to worry but he certainly gives me enough information to give me something to worry about. He said that one thing research has not been able to determine, because the pool is so small, is if children who get melanoma are more likely to develop other forms of cancer. If they are predisposed, if you will. Because she will need to have at the very least lung scans every year or so, radiation exposure is a consideration. Will this increase her risk? We don't know. He said that the possibility of her having a re-occurrence of her original melanoma - the most likely place of re-occurrence would be lung mets (or metastases) is very low but the odds of her body making another melanoma is another matter. He didn't say it would happen but what he did say is, "Her body learned how to make a melanoma at five years old without the help of the sun. Even with the best protection she will be exposed to the sun so the likelihood of her developing another one sometime within the next 100 years is pretty high." But he went on to say that as a "cancer survivor" she will learn exactly what she needs to look for and with regular check-ups even if/when she does develop another melanoma it should be caught early and the good news is early detection makes the odds of survival excellent.

Now, I suppose that is a lot to worry about but what I latched onto was his words "cancer survivor". Isn't that just the coolest phrase! My little Rachael is a cancer survivor! So let me take this moment to thank you all for your prayers and support and let's just rejoice in that.

We have 43 more shots of interferon to go. 43 more weeks of treatment and then her active treatment phase will be over and we will be on maintenance. Hopefully for the rest of her life she will remain NED - No Evidence of Disease.

I don't think that means our "journey through pediatric melanoma" is over necessarily. I mean, we will still continue to travel to Houston monthly for this first year and then every three months for a couple more years and then every six months up until the five year point and then every year after that for the rest of her life. So this has and will continue to play a role in our lives. Rachael endured a lot in a short time and still has a bit more to go but it far from defines our lives at this point.

As a quick side note, she counted her beads on her Beads Of Courage necklaces (she has two now) and she has 103 beads!

So that brings me to this blog and the purpose it has served. I like blogging and want to continue but I think it's time to branch out. I'd hate to think of myself as a strict "mommy blogger". I certainly am not into chronicling what I made for dinner.

I think about the title of this blog. "I Love You More". It came from a game I play with the kids where we try to outlove each other. "I love you more." "No, I love YOU more!" "Well, I love you more than infinity!" "I love you as much as you love me plus one!" It goes on and on.

The obvious truth is, I DO love them but damn if it's not hard sometimes! It is so stinking hard to be a parent. Can I get a witness? There are days when I really don't think I'm up for it. There are days when I wish they would just go away. I'm just being honest here. I know not everyone feels the way I do. There are those women who live for their children. Who mourn them going to school. Who love to do activities with them and come up with creative messy ways to enjoy them. They really enjoy play and will turn down offers for babysitters or even just time away with a girlfriend for lunch because they would miss their kids. They focus on "soaking up each moment" because the time goes fast.

I'm not that mother.

I do play with my kids and bake with them and make messes with them. I read to them and plan fun activities for them. But I do those things because I love them and I want to do the right thing. Not because I take immense pleasure in it all.

Many people have told me that my blog is "real". I guess that is what I intend to continue. You are going to hear about how incredibly difficult it is to parent an eight-year old male whom I Do. Not. Get. You are going to hear about how our precious Rachael is LAZY. Yes. You heard me. Lazy. "But she has been through a lot!" Yeah. She has. SO YOU THINK SHE COULD HANDLE PICKING UP HER SHOES WITHOUT A MELTDOWN!

You might hear about my husband's ongoing battle with narcolepsy. Not really. We just like to kid him. Problem is we (and by we I mean me and my friends) are not sure he thinks it's funny. I suppose we'll find out when he reads this. (Hi Honey!)

You will hear about how I need to lose weight and exercise and how I really REALLY don't want to do anything I need to do to achieve those goals. Hmmm... wonder if Rach got her laziness from me?

So, I'm going to change the banner and the picture on the blog soon and hopefully it will continue to be interesting. It's life. It's messy. It's hard.

But I love my little family more.

I'm not even good at the "bedside manners" part.

2010-01-03T02:16:00.001-06:00

I wouldn't go so far as to say I have prided myself on being a really big baby when it comes to medical stuff but it's certainly not something that has made me feel shame. I think I came by my squeamishness honestly, having grown up in a home with a mother who worked in a nursing home for years. There were many nights we were all sitting down for dinner and she would cheerfully ask, "Does anyone want to know what happened to me at work today?" That was met with a resounding "NO!" from me and my dad but inevitably my brother would want to know and then she would tell us anyway.

"I had to do this thing with Mr. Johnson and then there was ooze and puss and so I stopped but it was too late because it had built up and so I had to lance it and then it exploded and shot across the room and stuck there all while he was giggling and telling me what a cute nurse I am."

You try finishing your spaghetti after that.

When I decided to join the Air Force I was given this big book of jobs to look through and possibly choose. It listed every single job they have to offer and you would think it would have taken me a long time to get through this book, except I got to eliminate about half of the book when I skipped anything remotely related to the medical field.

When I became a mother, I was forced to attend to scraped knees on occasion but I am not kidding when I say that I got a bit woozy more than once. Even reading the Twilight books were good for a couple skipped meals due to complete loss of appetite. Once, one of my coworkers told me about a particularly gory infection he got and I came VERY CLOSE to vomiting right in front of him. The visual actually stayed with me for several days and whenever I would think about it, I would dry heave just a little.

So you can imagine my glee when I found out that I have to give Rachael a shot once a week.

I've never even watched myself get a shot. I always look away and just breathe deep so I don't pass out. And forget seeing a needle go into my kids. I've put on a brave face for them but I could never watch. But, in preparation I had been forcing myself to watch every needle stick Rachael has gotten. I went to the little demonstration to learn how to do it and got to stick a fake blob of fat (because that is JUST LIKE my kid with about -4% body fat) and went home with full confidence that I could do it! Or at least with full confidence that I could drive two hours away where my mother lives and let HER do it.

I numbed up her leg with the cream and got all the stuff ready, which is not terribly difficult but just complicated enough to make me feel like I know what I'm doing. Rachael is lying on the bed and I've got the needle all ready and she starts crying and I'm considering crying but I take a deep breath and go in. And I get right there next to her thigh and totally chicken out. I have to back up and I'm trying really hard to not completely freak out and Tom is not happy with me and I'm very intentionally NOT hyperventilating and she says, "I'm scared Mommy!" And I just had to laugh. And I laughed and laughed and she's crying and I yell, "I'M SCARED TOO!!"

And then I did it.

And it was over and we gave her candy and I had a drink and later when she was telling Marc about it, Grandma overheard her say, "It didn't hurt. I just like to cry so they'll give me candy."

And you know what? That's okay.

Noel!

2009-12-26T02:13:00.002-06:00

This morning started out early. At about 2 AM, pretty much 2 minutes after Tom and I fell into bed having finally cleaned the house, prepared the meal for today and wrapped presents both our children run into our room wide-eyed and bushy tailed squealing, "Santa came! Santa came!" So we got back out of bed and lovingly enjoyed a sweet 2 AM moment with both children on this blessed day.

Bwahahahahaaaaa! Yeah right.

It went more like this, "IT IS 2 AM! ARE YOU OUT OF YOUR MINDS??" I told them to go back to bed and STAY THERE for 6 more hours. So then I hear my kitchen timer being set. They actually went into the kitchen to get the timer so they could set it for 6 hours. This seriously cracked me up and I had the giggles for a good 5 minutes. Tom turns to me and says, "We got to bed just in time." No kidding. 10 minutes earlier and they would have wondered why Santa just dumped all their stocking loot on the living room floor.

So an hour later I'm hearing noises. I get up and both kids are in front of the tree inspecting all the packages. So THEN we all wake up and enjo.... oh forget it. "SERIOUSLY! YOU MUST GO TO SLEEP!!" "But we already napped! We're not tired! Can we just rest awhile?" "AHHHHHHHH!!!!"

Then at 4 AM, Rachael comes back into my room. "I napped again." At this point I ordered her in bed with me and we finally slept until 8 AM. At which point I had to wake them because Grandma and Grandpa arrived and finally, FINALLY it was time to open presents.

First order of business was the stockings and both kids got a nice big bag of pistachios to which Rachael excitedly squealed, "COCONUTS!!"

We settled in for what has got to be the most fun hour of the year. Gifts exchanged, surprises, excitement. It's like winning the lottery once a year. We are so blessed

Okay, so 7 years ago, Tom was deployed to Afghanistan for Christmas and I was alone with just my toddler. At the very last minute I called some friends of mine and said, "This probably is impractical but I love to cook and entertain on the holidays and this year I'm alone. Do you think you could come over for Christmas breakfast? You can come around 10 AM after gifts are opened. Come in your jammies! And it's okay to stay just a short time because I know you probably have other family obligations." And they said "yes"! I made Baked French Toast, eggs, sausage, bacon and fresh fruit. It was wonderful and fun and the beginning of a family tradition. Every year since we have invited one family over to share in Christmas morning with us. This morning our friends Steve and Lauren came with their son Ben, and my parents brought their friend Sharon over. I love to share a little part of our Christmas with friends as well as family.

So gifts are opened, new games are played, lego models are being built, ~~plastic crap~~ beloved new toys are being spread all over the house and mommy has napped. Now it's time to go start a new family tradition called, "See The World's Crappiest Movie Ever Made" on Christmas evening.

I'm going to do all those who read this blog a big favor right now so pay close attention. Alvin and the Chipmunks Squeaquel, or whatever it's called is the movie equivalent of a really horrible date who thinks he's awesome but is just creepy and not funny and then he leaves you holding the bill. Except I think I'd choose the bad date. Yes, it IS that bad. The only way that it could possibly be enjoyed is to watch it passed out. Because then at least you'd get a nap out of it. Which Tom did. Having said that, the experience was fun because we went with our friends Amanda and Jason and their four kidlets. Sitting next to them while Jason was tweeting how truly horrible it is and laughing AT the movie, a la Mystery Science Theater style and then giving a near standing ovation when it finally stopped was fun. Also, discovering that the faces weren't really cut off and the boom mike wasn't actually supposed to be SEEN in half the movie but that the projector was off and half the movie had been cut off was quite fortuitous. We couldn't figure out why most of the movie had only the eyes of the chipmunks with the rest of the face cut off. And again, the boom mike. In MANY scenes just clear as day. When the credits rolled we couldn't even see them because they were cut off at the bottom of the screen and it was then we figured out that the projection person had messed up. So what did we do? Well, as concerned movie patrons who are looking out for the good of all those wanting to enjoy some chipmunks after us, WE COMPLAINED! "Our movie was cut off and it really affected our enjoyment of this fine film." And I have zero guilt when I tell you that we got 10 free tickets to enjoy any other movie. One ticket for each person in our group who was subjected to that awfulness. Good on us!

I will say, Marc could not understand why we hated it so much. He was almost offended. I said to him, "If I made you watch three episodes of the Tellytubbies, how would you feel?" He said, "Like barfing." "Yes! It's exactly like that!" I'd rather watch Shark Boy and Lava Girl again and if you have seen that movie, you are cured of all curiosity to see just how bad it could be.

So now the family is snuggled in and tomorrow we go about four hours away to visit family we haven't seen in a long time. I know they will be thrilled to see us and especially Rachael. It was a sweet day and I'm so thankful we have these times to spend with those we love and to celebrate a King who came to serve and save.

Merry Christmas!

Sweet Return

2009-12-17T21:10:00.000-06:00

About six weeks ago Rachael and I met with Chloe and her mom Missy at MD Anderson. Chloe is another melanoma patient and it was great to chat with them about what to expect and hear about their experiences with interferon and staying at the Ronald McDonald House. At one point during our lunch they were talking about when they went home and threw a "Welcome Home" party for Chloe. It was lovely, we said goodbye and I didn't think much about that particular part of our conversation again.

Until about five days ago.

Some of my friends at the RMH started telling me how excited Rachael was to be going home to her party. Huh? What party? "Oh yes," they told me, "She said she's having pizza and cake and presents and all her friends and a sign and she's very excited about the whole thing!" Apparently Rachael had been telling everyone who would listen except me about this great party she was going to have.

Reminder folks... Christmas is in less than two weeks and I haven't been home in a month. And I have to whip together a party?! So I get on the phone with my friend Amanda, who happens to have four children. It went something like this: "I have to throw a party for Rachael and I don't think I have it in me to plan one seeing as I'm not even home. Do you think you could bring all four of your kids and have them act like a whole room full of people?"

Then I started thinking more about it and frankly, getting a bit stressed about the whole thing and I thought, "Brilliant idea! I'll just call her teacher and see if her class can throw a little 'Welcome Back' party! I'll bring pizza and store bought cupcakes and it's done." Well, apparently Rachael had been talking to Marc too and now HE was all excited about the party so crap! I have to include him too which means no class party!

So I decide to call two other families that have little girls who are friends with Rachael. Ironically, she hasn't seen either one of these little girls in several months - which is not terribly unusual once school starts, but she now had a burning desire to be welcomed back by all her people. "Um, can you come to my house day after tomorrow for a party?" They both said yes and lo and behold, I had the makings of a party!

Yesterday I went to the store and picked up a "Welcome Home" banner and a small balloon boquet which made Rachael look like a returning soldier as those things only come in red, white and blue. I pick up some plates, napkins, cups and a bottle of Sprite. One of my friends called and said, "I bought way too much stuff to bake Christmas cookies with so can I bring some cookies?" I felt a bit guilty saying yes but that didn't stop me. Thank you Kim! I ordered pizza and when Tom got home at 3:30 I asked him to sit down and watch T.V. with Rachael so she wouldn't get up from the couch. So while they are sitting there absorbed in Word Girl I "decorated", got the pizza driver before he rang the bell and called everyone to tell them to coordinate coming to the door.

The doorbell rings and I say to Rachael, "I wonder who that could be?" She jumps up to run to the door, does a double take when she sees the decorations and says, "It's probably one of my friends!!" She opens the door and 12 people are standing at the door yelling, "Welcome home Rachael!"

That moment, the moment that her jaw hit the floor and she was utterly speechless and just felt like the most special thing in the entire world, it was so very worth it.

I still do.

2009-12-15T01:53:00.001-06:00

Marriage is work. Everyone knows this, or at least thinks they know it but before they get married they think all the work will just be fun. The truth is, there is nothing in the world better than a good marriage but it does take hard work. Tom and I have been been married 12 years and I remember that first year laying in bed talking to him about how lucky we are and how no one in the world could possibly be as in love as we are and we had a conversation one night about the "for worse" part of "for better or worse". That first year was truly magical but we recognized that life can smack people in the face hard and we talked about if we could survive the worst. I can't remember exactly how it went but I do seem to recall that we decided it was a stupid and potentially depressing conversation to have and we went on to more fun things.

I wonder what we would have thought 12 years ago if we could have seen the future. Four major moves. Geographical separations. A year of depression for me. Unwanted deployments. An incredibly difficult and rarely fun adjustment to parenting a high-needs child. A year of unemployment. Near financial ruin. Major career change. Both of us working ridiculous hours and our children in daycare in order to keep our heads above water.

Our daughter being diagnosed with cancer.

How would our younger selves have felt about what the next dozen years would bring us? I think we'd be surprised at a few things but mostly scared out of our minds! I think we'd be surprised that we aren't more romantic. I think in some ways we'd want to scoop our present selves up and whisk us back in time to remind us of the fun we had and the absolute bliss of just being in love. I think we'd be a little sad actually if we were just looking at things from the outside. And as far as the circumstances go, I think we would try really hard to change them.

But our younger selves would be wrong on all counts. No, we aren't as romantic and giddy as we were in those early days and many things that have happened were incredibly difficult and even scary to navigate but we have a strength in our marriage and a commitment to one another that offers us so much more.

I'm going home tomorrow and I called Tom tonight and was very honest with him about some difficult feelings I've been having lately. It was a tough conversation at first but we never got mad and despite a little defensiveness at times, we were very respectful. Since Rachael's diagnosis there has definitely been some drifting apart. We haven't argued... we've just not really been on the same page. No one is to blame and I never once doubted that we will be okay, even though the statistics for couples going through what we've been through are frightening I always knew that we would survive. But our marriage has felt "off" to me.

So we talked about it. We talked for the longest we've talked since I left for Houston and once again I am reminded of how lucky I am to have Tom. We may not always get one another but the shared respect and the bond we have is stronger than ever. Our younger selves couldn't have imagined that behind the quietness and the crap is a love that is all the stronger because of it all. I cannot yet say this about cancer but the rest I wouldn't change if given the choice and I'm not sure our younger selves would have understood that. One thing I did recognize early though is that the work of marriage is a privilege and not a burden.

It is an honor to be your wife Tom.

Rub you.

It's a good thing.

2009-12-10T22:56:00.001-06:00

Back when Rachael got an infection in her drain tube (you can read about part of that crappy week here) I was watching her go through some pretty dreadful and painful stuff and I decided that we would take advantage of the good things cancer has to offer. Wrap your head around that sentence. Anyway, we were encouraged to sign up for Adopt-A-Family with the Candlelighter's to help our family with Christmas and at first I was all like, "No, no," and then Rachael starts talking about how she hates her life and there is nothing good and she just wishes she was never born and I'm all like, "Okay, whatever it takes to show her the good side of this we'll go ahead and do."

So I go to fill out the sign up sheet and OH CRAP. I have to actually write a wish list. Um... I have no idea what to get her, much less help someone else buy for her! Not only that but we got to do a wish list for Marc and.... AND Tom and me! I got a call from one of the staff members and she's all, "Um, you don't have anything here for mom and dad." Seriously? Because we were just planning to skip Christmas this year.

But I did manage to pull together a list of a few things and then I get a call from this couple named Tim and Donna and "would it be okay if we stop by today with Christmas gifts for your family?" Today?! I just gave my list yesterday. Wow, you people are good!

So around dinnertime this amazing couple shows up with LOADS of gift bags. I thought they must be delivering for about three families but they were all for us. I got teary and said to Donna, "You know, I have just not felt into the Christmas spirit at all this year but this is simply amazing." She got tears in her eyes too and told me she hasn't felt in the mood for Christmas in seven years. That's when her son Adam died very suddenly of cancer at four years old. After that they started Adam's Angels Ministries and she said that giving to kids with cancer is her Christmas.

They had to be at a football game for their son Andrew so we had far too little time to visit and get to know one another but these people... meeting these amazing, caring, selfless, brokenhearted, hopeful, beautiful people... that's the good part of cancer. Despite the gifts, which were an amazing blessing and will constitute about 90% of our Christmas, just being a part of this family's life, even for a short time is one of those things we can look back to and say, "See Rachael. See! It's not all bad!"

Thank you Tim and Donna for giving our family, not just gifts, but a moment we can point to and say, "This was something good about getting cancer."

So we got another blood draw today and lo and behold her counts are back up to 1800! Thank you for your prayers, God said "yes" to this one. It was quite freeing really, it was so far out of my hands that at this point I have every confidence that God is in control. We re-started interferon today and tomorrow will be the last day of high dose. And tomorrow... this is such exciting news I'm just wiggling in my chair typing about it... tomorrow we remove the catheter!! See that?! TWO exclamation points!! There I went again!! I haven't been this excited since I got my netbook.

No more dressing changes! No more dressing changes!! I think we'll go out and celebrate tomorrow by eating TWO poptarts instead of only one!

The Good, The Bad and The Pretty!

2009-12-09T22:21:00.002-06:00

Did I spend my first two weeks here whining? Well let me tell you, that time is over! I am having such a good time now and I owe it all to some really amazing friends that I have made. It seems a bit crazy to say what a great time I am having in this house but it is so true. Despite all the heart ache and our fair share of drama, there is a group of women here who are simply falling in love with each other.

Monday was Jeanne's birthday and we had such a blast celebrating with her all day. In the afternoon Jeanne and I went out and got pedicures.

Then that night a whole group of us settled the kids in another room with a responsible teenager for a slumber party and we all came to my room to continue the celebration. I made it my personal mission to get cool pictures of everyone there so let me introduce you to some of my closest friends in the house.

First there's Jeanne who is pure awesomeness.

We have known each such a short time but we have already invested a lot in each other. We are kindred spirits in many ways but she is way kinder and gentler than I am. Plus she's super gracious and when she reads this she's going to go on and on about how it's not true and I just love her and that's why I'm saying nice things about her. And you know, it's true. I do love her. But I don't say nice things about her because of that, I say them because they are true. And when (not if!) she writes her memoirs you absolutely MUST buy a copy because you will not believe the things this woman has gone through in her life.

Then we have Payton...

This woman is so stinking cool and I love her because she is just up for anything! She scared me at first but after her grandson got a liver transplant and her stress level went down a little, I got to know the real Payton. It's so fun to make her laugh, it's worth your while to get her to cook, and it's easy to be her friend.

This is Susan...

Her life is so complicated and difficult right now but she has an amazing ability to put horrible stuff aside and focus on what matters. We're all amazed at her strength and want to stand with her in support.

This beautiful woman is Azi...

This was the first time most of us saw her with her hair down and we were seriously wowed by her beauty! She gave me permission to put her picture on here but she keeps her head covered at all times. She is Islamic and from Iran and she is here without her husband despite so many people's best efforts to help them reunite. This woman is a spitfire and she will tell it like she sees it! She is hilarious and we all just love her.

Next we have Paige...

She is Payton's daughter and it's her son who got the liver transplant. I never saw this girl smile until after her child's surgery but goodness is it gorgeous. Paige has had to grow up so incredibly fast but she is calm and so mature. She has yet to enjoy her baby out of a hospital environment and I know she will treasure that little boy all the more for the time they lost. And oh my did I mention she is gorgeous?!

Here is my favorite teenager in the world, Rachel....

She and my Rachel have the same last name which we discovered when I got irritated with my Rachael and said both first name and last name. This Rachel is Jeanne's daughter and Jeanne turns to me and says, "What did you just say?" Then she says, "That is freaky because that is my Rachel's last name too!" Told you Jeanne and I are kindred spirits. Anyway, this Rachel refuses to take a bad picture. By far my easiest subject. I think it's because her heart shines through and the camera picks it up. I only wish my son were about 10 years older and they could fall in love. I pray for a girl like her to steal Marc's heart. She is amazing.

This is Joanne...

It takes a lot to get Joanne to open up but she runs very deep. She is incredibly caring and selfless. She just jumped right in when we invited her and though she sat back quietly she told us later that she was so glad she came and how much fun she had. I'm afraid with the limited time I have left I won't get to know her well but what I do know, I sure do love.

I did let them take a picture of me and I'm sure I'll catch flak if I don't post it

It was such a memorable night... thank you friends for making the way smooth here. Thank you for supporting me and letting me support you. I love you ladies... and that's not the margaritas talking!

So that was the good and the pretty... here's the bad.

Rachael got her blood work done on Monday as usual and part of her white cell count is below the lowest it can go and continue treatment. The lowest is 500 and she was at 410. To make a long confusing story short we are waiting now for it to go up over 1000 in order to be able to continue. If it doesn't go up within two weeks then interferon is off. For good. I'm not sure what the next step would be but we're just hoping for the counts to go back up. I have a doctor's appointment tomorrow when they will run more labs and I'll make sure I update with what I find out.

In the meantime we are just enjoying our time. Still feeling sorry for us?

I'm okay. You're okay.

2009-12-04T00:25:00.000-06:00

Thank you everyone for your encouraging words and it's sweet of you to say I'm not a Scrooge. Even if it made me want to stick my tongue out and yell, "Am so!" It's good that so many have faith in me. My husband in an attempt at solidarity told me that he's feeling the same way and that made me even more sad. I mean, hey, I get it. Really, I do. But what would have made me feel better would have been, "Honey, I've got enough Christmas spirit for the both of us! Bring on the cheer!" Is it coincidence that cheer and beer rhyme? I THINK NOT. Sorry. Random thought there. Back on track.

So there were fun festivities in the house in the past few days. Curly the Elf, a distant cousin (wink wink) of Curly the Clown showed up to do his balloon magic tonight. He brought his gorgeous wife with him and she is every bit as talented. She did these amazing face paintings and if my phone camera would show a larger print I would post them here. But you'd need a magnifying glass and it would just look like someone threw up on Rachael's face. Not at all like the gorgeous sparkly butterfly that it was. One of the kids here has been through chemo and has no hair and she painted the fanciest "Christmas" with holly leaves and berries and sparkles across her forehead. It was awesome. Then the kids got to meet Santa and I figured out what to get Rachael for Christmas! Except not. When he asked her she said, "I don't know." That makes two of us kid.

I'm starting to make friends and bond which is fantastic but a little bittersweet. I can't wait to leave but it will be hard. It's been a long time since I've invested in a new friendship like this. One family here has a little girl who can (and usually does) have multiple seizures a day. Seizures that she must be resuscitated from. So there has to be someone awake in their room 24/7. She and her 16-year old daughter take turns so it's usually party in Jeannie's room at 2 AM. Perfect for a night owl like myself but can you imagine?

This morning I inadvertently created some drama and if you are on my facebook you already know about it and realize how stupid I felt. Long story short I thought... no, I KNEW my wallet had been stolen. I had searched everywhere, had Tom freeze my card, put signs up in the elevators, cried in the doctor's office and had the whole house thinking we had a thief among us. And when I decided to search AGAIN in my car I found it. But hey, the cry was nice and cleansing so that's good. Did I mention how idiotic I felt?

Rachael is doing well and we only have six more treatments left. Tom is supposed to come tomorrow but they are predicting 2-4 inches of snow. Snow! Can you believe it? It will be the first time Rachael has ever seen it and I left our camera at home.

Okay, before I sign off, I want to say something to all the people writing me saying that they are reading and sorry they are not commenting and sounding... I don't know... guilty? Defensive? The main reason I did a shout out to those who comment most was NOT to make the rest of you feel bad, it was to alleviate my own guilt. Some of these ladies write to me almost daily and I pretty much never acknowledge their existence right now. I just wanted them to know that they buoy me and I appreciate them. It wasn't to make all of the others feel like I think they don't care. I know you are reading and that you love us.

Now, let's all have a group hug.

Not quite "Bah Humbug".... but close.

2009-11-30T22:29:00.004-06:00

I can't believe we are in the middle of the holiday season. If it weren't for Alvin and the Chipmunks playing in my car non-stop I could forget entirely. Thanksgiving was so low-key it was almost surreal. The volunteers who came in and cooked for the families are really something else and have truly inspired me. I'm not sure how I will incorporate volunteering in the future... we're just not there yet, but wow do I want to be like these people. They descended on the house before 8 AM and made a fantastic meal. And there were so many who were willing to give time in their day, away from their families and their own meal preparations. And... AND!... they cleaned up afterward! This was easier than the year we went to a restaurant for Thanksgiving.

My parents came and of course Tom and Marc were here and after a 1 PM dinner my parents left and tryptophan set in and Tom passed out. For the rest of the day. He wasn't feeling well so a 9 hour nap was not something I would begrudge him. It just made Thanksgiving very strange. We didn't watch the Macy's Day Parade. I didn't cook. No pumpkin bread (even the year we went to the restaurant I still made pumpkin bread), no post meal clean-up (not that I'm complaining) and then it was just quiet.

Marc and I hung out and had a great time. He's at that age I guess, where I vacillate between thinking he's the most amazing and adorable and clever and funny child ever to grace my life and wanting to strangle him. There's no in between. And as much as my kids missed each other they sure found creative ways to irritate the snot out of one another when they finally got together.

So, I decided that I wanted to go home for the weekend and despite the drive, which I'm starting to loathe, was a great decision. It was just good to be away from cancer and sick kids for awhile. Although I found myself really worried about a few kids in particular. One made it through a harrowing surgery with flying colors and was all smiles tonight and the other received a new liver this morning and will remain critical for at least 48 hours. My prayers are with this baby that he will make it and also with the donor family who lost a baby and then made the incredible decision to donate organs so another baby might live. There are no words for that.

So, home. It was good. I saw two movies, got to go to church, visited a friend and her new baby, had a game night with friends, and spent some fun time with Marc. Oh and we put up our Christmas tree. Which reminds me again that Christmas is almost here and I have never felt more unprepared. I honestly just want to cancel it this year and normally I love Christmas. I just have no enthusiasm and I can't pinpoint exactly what it is. I'm not unhappy I just don't feel a lot of joy right now. I know a huge part of it is the fact that my mind is preoccupied a great deal of time with sickness, cancer and death. Another huge part is just being away from home. Normally I make a Christmas chain for the kids and they take turns each night ripping a link off. A visual reminder of how close Christmas is getting. I'm not home and don't feel like doing it this year. I'm sorta hoping my kids will just forget if I don't remind them. Snort. The other thing that is hard this year is I have no idea what to get Rachael.

None. Zip. Nada.

Except overly priced plastic crap that she will squeal in delight over and then never play with for the rest of her life but still manage to spread all over her room. I'm at a total loss. Except how about no more cancer treatments? That would be cool.

Speaking of Rachael's cancer treatment, her blood counts are not high but seemingly stabilized and we are able to continue with interferon. So yay! My daughter is healthy enough to continue receiving a drug that makes her irritable and sleepy! Really though, we are very glad. And as far as the irritable and sleepy part goes, it's not awful. People who saw her this weekend were surprised at how great she looks and feels. And today she said that she felt great after treatment. Mondays were supposed to be the hard days but she is sailing through so we are truly thankful.

I don't want to feel this way. I want my children's joy to be contagious. I want to continue the traditions that we have started and be excited but I'm just NOT. You know, I thought I'd feel more of the "spirit of the season" when it cooled down. All weekend the kids wanted Tom to build a fire in the fireplace but it wasn't going to happen with 80 degree weather outside. "No Marc, we cannot build a fire when we are running the AC!" But this morning it was freezing cold and instead of feeling the crisp air and joyfully thinking, "Christmas is coming!" I was just cold.

Call me Scrooge.

I'd like some cheese with my whine.

2009-11-24T21:39:00.000-06:00

This place is starting to fill up with families in for Thanksgiving. Lots of new faces and luggage downstairs and the place is downright hoppin' at night. I'm waiting for the kids to fall asleep and then I'm going to go down and play a game with my mom who drove in tonight with Marc. It's good to have company but stressful having Marc here. If it were only him it wouldn't be so hard but my two children together are like gasoline and a match. Pretty harmless on their own but potential within, but put them together and it can be, well, explosive. And not in a bad way either, although there is that too. They just feed off of each others' energy and it is impossible to reign in without getting all crazy mommy on them.

Some other women and I were talking about our children last night and one woman said that she asked a black woman once how it is that black children seem to act so perfect. Now, this is an awfully broad brush she was using here but I do think there is a bit of cultural truth in it. Many black families do seem to have these children who are very well behaved. Anyway, she asked this woman and she told this story.

"When a woman is about to have a baby, I tell her, from the beginning, act crazy enough that your child thinks you just might be."

Now, I'm not sure I ascribe to that exact style of parenting but it did make us all laugh and give each one of us a moment of... "Hahaha!.... pause ..... Hmm."

So where was I? Oh yeah, both my kids are here. And tomorrow Tom and my Dad are coming in. And all this is great and Rachael is feeling good and overall we had a good day. I just feel very out of it. I mean, I can engage in conversation and talk and even laugh, it's just I don't feel the zest of life. Which, hey! That's probably really normal. This week is going exceedingly slow.

Things aren't as bad as I'm making them seem on my blog. This is just working out to be my dumping ground.

I want my life back.

Week Two

2009-11-24T02:00:00.000-06:00

I'm posting ~~tonight~~ this morning, glad with the knowledge that others in this house do not know I write a blog and read it because I'm about to get all sad for our situation and it's one that many others would be doing backflips if this was all there was. But for me and my daughter it's hard to see some cold hard numbers about what this "medicine" is doing to Rachael.

She had bloodwork and labs done today and the numbers aren't fantastic. It's all a bunch of medical blah blah blah but the two numbers they are keeping an eye on are her neutrophil counts and liver function. The normal range for the neutrophil is between 1700 and 7300. The last two labs she had done were at 2440 and 2960. Today it was 560. Which means she is pretty immune-compromised. I had thought if we were home I could have sent her to school and gone to work because she is feeling so great but today we were told to not take her into crowds and call immediately if she runs a fever. So obviously ~~the cesspool of kid-germs~~ school would not be an option. Grocery stores aren't an option. And she got a mask, which she hates.

Next week they will test it again and if it's below 500, they will stop interferon and test again that week and wait until it goes up before they start again. So being here longer looks like a very real possibility. Which wah, wah, I might have to be here five or six weeks instead of four but it is still very depressing. I would say that I don't know how the people who have to be here for months on end with no end in sight do it but the truth is, they just do because they don't have a choice. And it just sucks all the way around. I find most people sleep all day and one guy spends every waking moment completely inebriated. It's a house filled with cancer and depression. Nice place, clean, well stocked, many amenities, pretty but not quite "home away from home". Unless home is a place that drives you to drink.

Other than her inability to fight off infection, Rachael looks and acts extremely healthy still. She had pretty much no side affects to today's infusion and she is still eating and awake all day. Except one thing. She is extremely irritable. Extremely. She has her moments of joy and spontaneous "I love you mommy" outbursts but they are tucked between bouts of frustration and rage. It's scary because I know we are just at the beginning and I have heard horror stories about how this drug can seriously mess up a person's psyche. These stories run the gamut from depression to rage that has led to abuse in a man who never showed signs of being abusive to suicide. Interferon messes with serotonin. Which is the "feel good" hormone. So a big part of me is hoping that what I am seeing is normal five-year old angst but another part of me is bracing myself for the storm.

Right now she is sleeping and so beautiful and peaceful. And in these moments I think, "Tomorrow I will do better by her. I will play more with her. I will cook with her. I will read more to her." But the reality is when I play with her I invariably and quite unintentionally irritate her and she stomps off saying she doesn't want to play anymore. And when I cook with her she complains the whole time about everything and there is no joy there and when I read to her she tantrums when I finish because she wants more. And it won't matter how many more there are. I want desperately to make this better, easier. But the truth is she is angry that she has cancer and I can't take it away. And so she is angry with me. Because I have told her so many times that I want to make it better. That I wish I could take her pain away. That I would gladly take this from her. But I haven't done that and so she is mad at me.

I just spent the past ten days reading a blog from a woman whose newborn died at six days. I found her blog while looking for support for my friend who just lost her three-month old. The situations are entirely different from mine but one thing that really resonated with my life is this idea of "abiding". Those who were willing to abide, who expected nothing in return but made it clear to her that they were always there and really wanted to know how she was doing are the ones who she leaned on and appreciated the most. I want to abide with Rachael. I want to be there with her and for her and expect nothing in return but I'm finding as her mom, her primary caretaker, her nurse, her disciplinarian, this is impossible. And it makes me so sad.

Rachael, I hope you know how loved you are. My baby. My sweet girl.

Love Fest

2009-11-23T00:02:00.003-06:00

I'm not feeling very wordy today and there isn't too much to report. We had a relaxing day with Tom and Marc. The siblings were back to normal... you know, irritated that the other is breathing the same air. When they left, Rachael watched a movie and then I read four books to her. Something I have gotten out of the habit of doing and she was ecstatic.

I thought I'd take tonight to give a shout-out to my blog cheerleaders... the ones who let me know I'm not posting into a void. I started this blog to keep a record for Rachael, help me through my feelings and allow me to update those who asked without having to talk on the phone. But somewhere along the way, people started reading and even commenting. Thrilling! As any person who takes part in this naval gazing exercise called blogging, it's way more interesting when you think someone might actually read what you are saying.

So, to my friend Robin... thank you! You have encouraged me so much and made me feel a great deal better about how I handled certain situations with just a few words. I love you and you totally win the prize for being my number one blog-cheerleader. You can put it next to your mother of the year award!

Lone Star Ma... It means a great deal to me that you are reading and care about us. I liked you from the first day we met about four years ago but it is through this experience that you have come into my life in such a significant way. Thank you for loving me, mother to mother, through this journey.

Amanda... what can I say? You are my real-life cheerleader and I love that you leave comments when you could just text me!

Kim.... Thank you for all the encouraging things you have said to me and how you love me even though you know me!

Jenni.... I am so so sorry. The fact that you take time out to see how our family is doing is humbling. You are never far from my thoughts as we battle this.

Carrie.... Wow! I can't believe how you take the time to continuously encourage me. Thank you my sister.

Lisa.... I've already told you how your love for my family and for me has really touched me in ways I can't even describe. You are the true definition of the "neighbor" Jesus spoke of.

Connie... I feel like you are the friend who is "abiding" with me. You have shown me that you are here for me and that is very meaningful. Thank you my friend and please bug me to have lunch when we get back.

Anonymous.... Sometimes you say the best things and I wish I knew who you were!

I know there are many others who have told me they are reading and who have commented. And I also know there are others... friends, family, strangers, the computer illiterate who can't seem to figure out the comment thing (I'm looking at you Pamela) who think of Rachael and pray for her and that is what I'm most thankful for. I just wanted to say a special thank you to this group of ladies who have continuously let me know that they are reading and caring and keep me looking for something interesting to talk about! I love you man!

Now if only I could remember where I put my spare car key.

2009-11-21T21:03:00.000-06:00

Short term memory loss seems to be a common complaint of parents. It's got me thinking that there must be some sort of biological need for this phenomenon and I think I know what it is. Species preservation. If it weren't for my extreme short-term memory loss my children would be in big trouble because Marc would have been abandoned about five years ago and I would have dropped Rachael off at the local zoo yesterday. But! Luckily for short term memory loss I was enamored with my children today.

So yeah, yesterday. It was a really hard day for a whole lot of really insignificant reasons that when they were all put together in one big suck soup had me in or near tears most of the day. Rachael acted HORRIBLE all day long. I mean from 20 minutes into waking up all the way through and I'd love to say I handled it in a manner fitting of my mother of the year award but in fact, around dinnertime I finally yelled, "You are being an ungrateful brat!" And I didn't even feel very bad about it.

Cancer has made Rachael a bit spoiled. And some of that is okay because frankly, she has to go through a lot of things no five year old should and if that means she gets a stuffed animal and lollipop just for walking through the door that's okay. But it becomes a problem when I feel held hostage by her temper every time she asks me for something I won't give her. Like candy for breakfast. Her tantrum/sulky mood/deep sighs/frustrated grunts/stomping feet/angry glares/bouts of crying lasted well over an hour when I would not give her candy for breakfast. And the morning was already tough because of other things so her mood was making it much harder. And in the afternoon when I decided we needed to bond and have fun together I took her to the Children's Museum and played with her for two hours. We had a blast and when we left she turns to me and angrily says, "Why don't you ever have gum?!" I was like, "Huh?" and then she goes on about how she didn't have any fun and she doesn't even like that place. So that culminated in me calling her an ungrateful brat which I'd venture to say was completely true.

Emotionally I'm struggling. It's hard being surrounded by cancer all day, every day. There's a heaviness in this house but even when I'm having a bad day, I can't complain because my bad day means something entirely different from my next door neighbors bad day. I know I have a right to feel like this is hard and we can always find someone in worse shape, it's just that if you are having trouble losing 20 pounds for instance, you don't complain about it in front of someone who needs to lose 100. Yesterday I met a mom whose child has a different cancer but much the same prognosis. He doesn't need chemo so he looks healthy, save some puffiness. It was absolutely wonderful to talk to her because I felt like I could talk freely about our struggles without being insensitive. I have friends at home who are very supportive but there is something special about connecting to another mom who is in the same boat. And for the first time since I got here, I feel like I did that.

And this morning they went home.

It just made me want to cry. I was genuinely happy for them but I just wish it could have been timed differently. I think we had the potential to be really close. Jamye, if you are reading I'm glad you're home but I'll miss you. And thanks for all the food!

Today though, Tom and Marc came and it was a wonderful day. We went back to the Children's Museum and the kids were hilarious. They have this place called Kidtropolis which is basically a city run by the kids. They have all these centers like emergency services, news station, bank, city hall, grocery store, and restaurant. Watching them get into the play had us busting out laughing a lot. Marc, in one week, looks like he has grown so much and he made himself head chef and would make all this food and then send the girls out to waitress for him. At one point he yells out, "Okay everyone, break time!" There were just so many little moments with the both of them where we could see how much they are growing up and what kinds of people they will be and it was just fun to be with them. So I guess I'll keep them around.

God bless short-term memory loss.

The one where I start out all happy and end up depressing everyone by the end.

2009-11-19T20:46:00.001-06:00

I have a serious aversion to clowns. The week before Halloween, Tom and I went to San Antonio and while we were out walking one night there was a freakishly scary clown walking around and I just about jumped out of my skin. My heart was pounding and I was hiding behind Tom like a two-year old clinging to her mama. Even circus clowns freak me out. I'm not sure where the paranoia about clowns came from but I am not alone as evidenced by the fact that one can buy this t-shirt:

Makes perfect sense to me. So it is with great pride that I tell you I did not run screaming from the room when Curly the Clown showed up to make animal balloons for the kids tonight. I could tell there were others who were trying to look very very intently at their food for fear that he would see them and they would die but I put on my game face and announced happily to Rachael, "Look! A clown!" I use this game face when getting on an airplane as well because I don't want to pass that particular phobia on either.

Anyway, Curly starts making the standard balloon animals and shapes. A princess crown, a sword, a turtle and lady bug and then he starts making the really elaborate balloons and I found myself starting to warm up to Curly. If I were really rich, I would fly him into my hometown to attend my kids' birthdays. Or just to hang out and entertain me while I make dinner. My world was opened up to not only see the beauty in a balloon but also to make room for one clown. But only one.

Rachael is feeling great today. I can tell she has lower energy but as I'm alone here I'm not minding that so much. Her appetite has definitely decreased but she is still eating. She gets headaches but they don't make her cry. It seems her body is adjusting to interferon and amazingly, she is sailing through.

It's at this point I want to say, "Glory to God," and that is true but I struggle with that. I'm just typing off the cuff here so go with me for a minute. What if God does not answer prayers about health as a "favor" as it may be to those who pray but for some other reason? We have all known of people who were deeply prayed over by many and who remained sick or died anyway. I think this is what so many people struggle with. Does God play favorites? Why bless them but not me? Or why bless me but allow my friends to experience the death of their three-month old daughter? I think of the man whom Jesus told to get up and walk, and the man did just that for the first time. Was there someone who was also crippled who truly believed and desired to have the same done to him but remained lame? How did he feel? It just makes me think there must, MUST be some greater purpose to healing than simply to make the sick well. I don't have the answer.

Cancer is so indiscriminate. Just in this house there are so many countries represented. There are middle-class white people like me here. There are single moms. There are alcoholics. But they all have their children here and they all pray for healing. And some of these kids will die anyway.

How can I claim God's blessings in my life and then look at the 13-year old girl who was just told she has to have chemo and will now lose her hair. After the surgeries and the radiation burns, now this. We had a good day, yes, but my heart is heavy.

It's not that I'm ungrateful to God for answered prayers, I just don't understand how or why.

10.1" of happiness

2009-11-18T23:01:00.001-06:00

Tonight's post is coming to you from my brand new netbook! Oh how I love thee netbook! See how excited I am? I'm using all my exclamation points right here in the first paragraph!!

So yesterday Rachael and I went on a wild goose chase for a cable for the portable dvd player. This hunt took three hours (this is where yesterday's title came from by the way) and was ultimately successful. She had been asking all day to watch a movie but the three t.v. rooms were always taken so I decided to bite the bullet and go out in search of said cable. After three hours and three different stores we finally get back to the RMH and Rachael is beside herself with joy because finally FINALLY she can watch her Barbie movie.

We triumphantly make our way up to the room, plug our dvd player into the wall and yay! Power!

Except the screen goes black.

No problem! We'll just turn it off and start again. Rinse. Repeat.

Our dvd player is dead.

At this point I'm not sure who is more ready to cry. We go downstairs in the vain hopes that maybe, just maybe they will have an available t.v. room so she can get her fill of Barbie mind-numbingness but they do not. Then all of a sudden, an angel appeared from the sky named Gabriel! No, no. Actually her name was Bailey and God bless her a million times, she says, "We have a dvd player you can borrow."

I didn't even bother to pretend to be all, "Oh no. I couldn't possibly." I resisted the urge to fall at her feet and weep in gratefulness but simply managed, "Oh My God! Bless you! Bless you and thank you and yes!" Thank you Angel Bailey for saving the day. Next time I make myself a B-52 I will think of you and say a toast in your honor.

So this morning I told Tom that I needed to get a new dvd player and he says, "Would it be worth it to just get a netbook?" Why yes. Yes it would! (See, I can't talk about it without the exclamation point.) It did mean three more hours of running around. Can I just ask, who would willingly live in this city? No offense to the locals, you have nice shops and oh do you love your Asian food but seriously, I'm thinking about limiting my time on the streets to the hours of 1 AM and 4 AM. It takes 30 minutes to go three miles in this city. But I navigated it and now I am sitting here typing on my new netbook(!).

I should mention that Rachael wanted to watch a video on it but when we got back, lo and behold, there was a free t.v. room so she got to curl up on the couch watching Kung Fu Panda while I played on my new toy. Maybe tomorrow I will let her watch a video on it, but only if there isn't a t.v. room available.

And on top of it all Houston traffic blows!

2009-11-17T21:29:00.000-06:00

I'm sitting here wanting to update but I just don't know where to start. The past two days have been hard but at the same time, I'm surrounded by people having a harder time. I told a woman today that in my "real life" people would be feeling sorry for me but around here it's just Tuesday. She has a three-month old waiting for a liver transplant so yeah, get in line with the sympathy.

I was really hopeful, and a bit in denial I'm sure, that interferon would be no big deal and she would sail through it. Yesterday they hooked her up about 5:30 PM and she got her first infusion and she was feeling fine so I'm thinking, "Woo hoo! Home free!" Oh sweet naivety.

As soon as we walked out of the clinic she started complaining of a headache. Within ten minutes she was outright crying from the pain of it and I started to get worried. What do I do? Is this normal? They can give a person a huge list of side affects and one can shake her head and say, "Yes, yes, I understand," but until it's your kid who is freaking out with throbbing head pain it doesn't really sink in that the side affects train is headed your way and you can't stop it. So, I took her back up to the pediatric floor but they were closed down. I ran into a nice oncologist who said, "Interferon? Yeah, that's normal." So, with the hopes that he was right and my child wasn't going to have a sudden brain aneurysm I took her "home".

Last night was not fun. The headache was followed by stomach pain and that was followed by copious amounts of puke. I've cleaned up puke before but this was the absolutely most foul smelling vomit I could have imagined. I'm trying to get it all cleaned up and doing my best to not add to it and Rachael, noticing me dry heaving says, "What are you doing? Are you going to throw up too?" I'm all, "I'm trying not to!" and she laughed! Head pain, stomach aches, puking and she still has it in her to laugh at her mom about to lose her cookies.

After she threw up she got cold. Really, really cold and three blankets did nothing to help. She was just shivering and crying. And the shivering made her puke some more. So, we finally drifted off a little bit and suddenly she goes, "I feel heavy!" Heavy? I didn't read that on the side affects list. What does that mean? She, in typical Rachael fashion, gets irritated with me that I didn't know exactly what she meant. "You know mommy. Heavy!" Then she throws the blankets off her and begs me to turn the fan on her. The room was cool but she was so hot and thirsty and please, please throw me in a bath of ice cubes I'm dying of the heat.

She was so hot to the touch. So unbelievably hot. It was at this point that I realize I don't have enough tylenol to last us through the night and - can I be more stupid - I didn't bring a thermometer from home. And it's 1 AM. I say to her, "Rachael, I am going to need to get a thermometer and some more medicine. Do you think I can leave you for a little bit?" She said okay and with furious prayers that she doesn't have a seizure I go out in search of a 24-hour CVS. I get back within 20 minutes and thank you Jesus she was okay. Her temp was 103.1 and this was 30 minutes after I gave her a dose of tylenol. So I give her motrin and within 20 minutes it started to go down. About an hour later it was normal and she felt fine. And we slept.

This morning we get up to do it all again. Today the symptoms were longer lasting but not as severe. No puking (yet) but she had a nasty headache all day long and her stomach hurt. Plus her body hurts and she's cold. And tomorrow guess what? We get to do it again!

It dawned on her today that we're going back and what they are giving her and that the two are connected. This was not met well and at one point she even said that she doesn't want Daddy and Marc to come visit us because she will be sick. How sad is that? I assured her she'll feel better on the weekend because she won't have to get the medicine on those days but right now, three days seems like an eternity.

She did get to participate in the Children's Art Project today (it's every Tuesday morning) and this evening she was talking about it as, "Remember what we did yesterday?" So, the days are long right now. And it's hard without support. It's hard to get to the grocery store and do laundry and shower when I have a child who is hurting. And it's hard emotionally because she is mad and guess who gets the brunt of that? She told me earlier that she is sick of me being her mommy. And Tom is discovering it's hard running a household and taking care of a child who has homework and getting everything done when one works full-time. This would be easier to handle at home but I do not regret or doubt the decision because the long-term benefits will outweigh this hard time. But it's still hard.

I want to get her in school but she's in no shape yet. Tonight she was lying on the couch while five little girls around her age were running around squealing and having a blast and she had zero desire to join them. She wanted to be here so bad and enjoy it but she just feels like crap. It's so sad.

For the first time, I'm really feeling like I have a child who is fighting cancer and though there is compassion here, sympathy is something that others cannot spare.

Temporary

2009-11-15T21:28:00.000-06:00

In the words of Rachael, "Tomorrow is the big day!" Poor thing. She's actually excited.

I can sort of see that though. Starting means we're getting closer to ending. We are all looking forward to removing the catheter and we have to use it for what it was put in for before we can do that. The Ronald McDonald House is really special and I know she's excited about that. I just pray she feels well enough to enjoy it. We leave around 10 AM and I am updating my blog because I'm supposed to be packing and it rates up there with my top five least favorite things to do. Like eating peas.

I wanted to write about something here because I don't want to forget it. I want to be able to go back and read it again and in my sharing, maybe I'll give someone else something to think about. This morning our pastor talked about heaven. I cannot possibly do justice to all he said but there were a few things that were new to me and had a great impact. These are the parts I told my kids.

"Hey kids, Pastor Micah talked about heaven today and it was really awesome!"

Marc: "Is it true that in heaven the streets will be made out of gold?"

"Funny you should mention that Marc because Pastor Micah was saying that gold is the most precious metal we have on Earth and can you believe that THAT is what they use to fill the potholes in heaven! Imagine if the stuff we walk and drive on and hardly even notice is gold how much more beautiful the rest of the place will be."

Kids: "Whoa."

"Yeah, and you know, God took six days to make the Earth. You've been on top of a mountain before, think of how beautiful it is. And the sunset! Isn't it gorgeous? Well, imagine if God did that in six days what He could do with eternity? Imagine how beautiful it must be! You know how fun Disney was and how they just thought of everything? Well, men made that place in about 50 years and this is God we're talking about!"

"Wow!"

"Yeah, and remember the absolute most fun and amazing thing that's ever happened to you. Well, the most boring thing in heaven will be even better than the most incredible thing here on Earth! And kids, in heaven we won't ever be in pain or feel lonely. And also, everything will be brand new all the time! There won't be anything old! And it's real! It's a totally real place!"

Micah said it's our home and that God is preparing a place just for us. I've never been so excited to go.

There was a reason I wanted to tell my children about this place called heaven. Tuesday night when I was laying in bed with my kids we got to talking about God and heaven and I asked them, "How do you think you get to heaven?" They both said something along the lines of, "I try to do good stuff like go to church and be nice to people." I was able to share with them both that night about the awesome power of God's grace and how they can't work their way there. That the only way to get there is through the power of the resurrection of Jesus. I used simple language and answered their questions along the way but I was sensing understanding, particularly in Marc. I said to him, "Marc, is this something that you want? To give your heart to Jesus?" He said, "Yeah. Probably in about 10 years." I said to him, "You know, you can say a prayer and ask God to forgive you for the bad stuff in your life and to use his power to forgive you and save you. You can say this prayer alone or I can help you. You don't have to wait." I totally expected him to say he would think about it or maybe later but he was like, "Yeah! I want to do that." So I led him through that prayer and he was so earnest and sincere.

When we finished he was choked up but he had the hugest smile on his face. He was completely and uncharacteristically happy. He said, "Mommy, I feel like I can breathe for the first time in my life!"

Wow. WOW.

I told him, "Marc, I want you to know, that prayer has changed your life and you will never have to say THAT prayer again. God wants you to know more about Him and to talk to Him everyday but from this day forward you are a Christian." He jumps up and says, "I'm a Christian?! I'm a CHRISTIAN?!!" Rachael gets up and yells, "He's a Christian?! I WANT TO SAY THAT PRAYER TOO!!" So we ran and got Daddy and led Rachael through that prayer and my children were jubilant.

And Marc in particular is changed. Put it this way, when we got back from Disney I asked him if he told his classmates about his trip and he was like, "Not really." But Wednesday after school he told me that he was telling everyone there that he is a Christian now. He is so excited. The only time I have seen anyone this stoked about their new salvation was when Tom first understood and believed.

Marc is still Marc but he seems gentler. Kinder. He has a desire now to care for others and he wants to talk about it a lot. For those who know him, this is really huge. And he really REALLY wants to get baptized.

Hearing about their future home today was thrilling and I praise God for His love for my children.

Best laid plans and all that.

2009-11-13T19:53:00.000-06:00

This has been one full week. Yes, indeed. Thursday and Friday were totally full. What? Those two days don't constitute a week you say? Well I say OH YES THEY DO.

Tuesday I get a call from MD Anderson saying, "We're just reminding you of your appointment on Thursday for labs and blah blah," and I say, "Well, we're starting interferon that day too, right? I mean, I've got my whole life planned out for starting interferon so that is what's happening, right? RIGHT?" The appointment calling lady had no idea what I was talking about so she calls Dr. H.'s nurse and she says, "I'm not sure, let me talk to him and call you back." About an hour later she calls back and says, "Rachael is just coming in for an assessment before she starts treatment and then we'll start on Monday." Ohhhhkay. Again, everything planned out already but I can go with this. After all, it means I don't have to go home and pack for a month because I have a whole other weekend at home which is nice. On the bad side, it means I have to drive to Houston Wednesday night and turn back around for home on Thursday and then go back again on Sunday. But that's okay because hey, it's a whole weekend at home! Including Friday when I can get all packed and relax and it will be so nice (this is ominous foreshadowing, by the way)! That was especially good news because I had been feeling not well and a couple extra days to relax might help me feel better.

So we get to the clinic on Thursday and it seems that our decision to do the trial of interferon came as a bit of a surprise to them. I want to tread carefully here because I know Dr. H. reads this blog so I won't use all caps and use creative language when describing my frustration but I had felt pretty confident that I had informed them more than once of our decision and it seems that this appointment might have included more than just some blood work if there was any protocol that needed to be completed before starting. But when I get there I guess it suddenly became real to them and so they had to call in a bunch of favors and drag people over who weren't even scheduled to work the clinic that day to get Rachael into all the other places she needed for tests that were prerequisites for the trial. Bottom line, I thought we would be leaving for home around 2PM on Thursday and was informed around noon that we had appointments scheduled for the next day. Furthermore, to make sure she got everything done, "Why don't we just delay the treatment for one week."

Let me reiterate - my whole life is planned out already for this month! (See that, I went bold instead of crazy caps. Restraint!) My husband has changed his work schedule. We have plans for when I'm supposed to get back. I understand there may be complications that might delay us anyway but I don't want to guarantee the delay from the outset. And why didn't anyone figure out I was going to need this stuff before I showed up?!

So, in the past two days Rachael had her pupils dilated and was examined by an opthamologist, she had a lung x-ray, an EKG, an echocardiogram, a CT scan and a PET scan. And because of said favors and doctors being called to the clinic there was a lot of waiting. And normally I'm really okay with waiting but I guess the combination of being totally unprepared for the extra appointments (the ONE time I don't bring the DS or even books!) and feeling increasingly more sick and the lack of sleep because of being sick I did have one not-very-proud moment where I threw a little temper tantrum with tears and everything.

But we got it all done and we can go ahead with interferon on Monday. I sorta missed out on my "relaxing Friday" though.

Now for the cool stuff that happened. We got to meet another little Melanoma Warrior, Chloe and her mom Missy. I've mentioned Chloe before here and though we didn't have much time together it was really fun for the girls to meet. Chloe is an amazing wealth of information and her mom is very encouraging. She said several times, "Once all the testing is over it gets really easy." Let's hope Rachael's experience is like Chloe's was!

The other amazing thing we got to do is spend the night at the Ronald McDonald House. This place is FREAKING AMAZING! Let me just say, I hope I have visitors this next month because to keep the greatness that is the RMH to ourselves would be a darn shame.

I have so much more to share but that little sickness I was feeling a few days ago has turned into a full-fledged kick my butt illness. So, I've taken my newly acquired antibiotics and I'm going to go to bed. I will start updating more again now so I'll fill in the rest of the week - which had some truly amazing moments, over the next few days.

Tears and Joy... intermingled.

2009-11-08T22:16:00.002-06:00

I could not bring myself to journal this past week as I mourned for my friends. Their loss hit me pretty hard and my sister in-law said it is because I cannot help but project my feelings about Rachael into a little. I'm not sure if that's true. I think it's devastating enough without having to project but the way I process grief seems to be a little different than others, so maybe that is true. I do find it easier to grieve for others than for my own. I don't know if that's normal but it's my way of coping, I guess.

This week feels like it is headed towards us like a freight train. Rachael and I leave on Wednesday for Houston to start the one-month, high-dose interferon. It's the right decision to go there, of that I'm convinced, but as it gets closer I'm having some serious ambivalent feelings about going. I'm pretty much ready for this to be all over and in a way it's just starting. It's hard to not resent it a little especially when she is completely healthy looking. As of September 24th when they removed all her lymph nodes and they came back clear she is "NED" or "no evidence of disease". Which means, from what we can see, she is cancer free. This next year is preventative and if it weren't for the medication she will be taking, our lives would return to normal.

I know that there is a chance of re-occurance, but I will not live my life waiting for it. I think what I have now is perspective. Rachael is not dying. She is happy and healthy and to waste energy thinking about it any other way is almost disrespectful of the blessings we have. If that changes in the future, we will deal with it then.

Now... drumroll please... presenting my little birdie (or as we affectionately called her, our "Flamboyant Little Gay Peacock"!)

This year Marc designed his own costume. He was going for "Psycho Ninja". I'd say he pretty much nailed it.

Joy... tears... It's hard to process it all. I am working on thankfulness.

Heaven Is The Face

2009-11-05T00:15:00.001-06:00

Driving to Houston this morning I heard this song for the first time.

To all those who have lost a child, my heart is broken tonight for you.

Heaven is a place where there is no more goodbye

And no more not enough.

2009-11-03T19:15:00.001-06:00

There will not be a new update for at least another day. I will be attending a funeral tomorrow and I simply don't have it in me to chronicle everyday things right now.

Our family is doing very well though and I will show pictures of Halloween when I post again.

Brokenhearted.

2009-11-01T21:52:00.000-06:00

Yesterday was an incredibly emotional and difficult day. A close friend of mine lost her 3-month old granddaughter very unexpectedly. She was a little sick and went downhill faster than they could help her. There are no words.

You know how people say their hearts are heavy? Mine felt like it was in a choke hold all day. The kids were so excited about trick-or-treating and getting dressed up and there were things to do but I just wanted to lay down and cry for this family. Please pray for them. I spoke to the mom today and she said, "I just miss her so much." God. I can't even formulate a prayer.

I will show you the kids' costumes but I need to give it another day. Hold your babies and be thankful tonight.

Random Photo Friday

2009-10-31T02:05:00.004-05:00

Catchy title, eh? Like maybe some sort of thing I'm going to start and every Friday you'll check on here and find a random Friday photo. Or not.

Truth is, I don't have too much to journal about right now and I'm not complaining! Besides the fact that the third grade is trying to kill me (seriously? Seriously?! Four... count them... one, two, three, FOUR big projects due in the next couple weeks!) our lives are pretty normal right now. Hence, a random photo rather than an update.

This photo was taken a few days before her surgery to remove her lymph nodes and place the catheter. We knew it would be our last opportunity to hit the water for awhile so we broke out the new cool SPF 50 swimsuit and hat, slathered on a ton of sunblock and headed to the ocean. This picture was taken before Rachael got stung by a large jellyfish, hitting both arms and across her chest and leaving scabs that continued to swell up a month later. But nevermind that sad bit of information and enjoy the beauty of the before shot.

And just because they are gorgeous and I love them, here's a picture of my men.

So there are my random Friday photos. Of course, technically it's no longer Friday but I have not gone to bed yet so I'm going to count it. Tomorrow.... well, later today, I will present a visual for the reason behind my late night. Can I just say right now though that Tom and I cannot wait to see a certain little girl's reaction to our labor of love?

Tweet tweet, ya'll!

Who is this hip child living in my house?!

2009-10-28T16:26:00.002-05:00

So, I broached the subject of GHOST! SCARY GHOST with Marc and no joke, he looks at me and says, "Mommy, ghosts are SO last season!" Oh, excuse me Mr. Vogue, I had no idea you were so in tune with the latest Halloween fashions.

At least he still called me Mommy.

Big Bird and Boo!

2009-10-28T00:58:00.002-05:00

A few months ago Rachael found a masquerade mask with feathers and sequins in my closet. Before my mother goes, "I don't want to know anymore!" let me assure you that it's been there for years from when Tom and I were invited to some sort of party. Probably a masquerade one.

So, she finds the mask and I say, "Hey, we should have you use this for Halloween. You can be a bird!"

Oh stupid me! So now, like five months later Rachael wants to be nothing but a stinking BIRD for Halloween. I've been trying to talk them into being ghosts but where last year that would have been like, Totally Cool! this year her mind is made up. A bird. All I can say is thank God Tom knows how to sew.

I did manage to find a homemade bird costume that looks really cute and the lady claims she made it in one night. So maybe we can pull it off in three. Marc hasn't decided what he wants to be yet but I'm really going to try to push the ghost angle. "Nobody will know who you are! It's the perfect disguise! You can go in only your underwear underneath!" What might tip the scales in my favor is if I tell him it's scary. We've always had the policy that we do not allow scary costumes. I know we had a reason for this in the past but this year I'm just tired and GHOST seems like such an awesome idea!

I was telling my friend Amanda that I get these comments about how wonderful I am and though I love to read them, I feel like you don't get the full story. I told her I need to write about some of the lousy stuff I do. So there you go folks. I waited until the last minute so I am going to go against my principles and ask my son to be a scary ghost for Halloween.

I realize that's a pretty lame "lousy" thing but I don't think the internets are ready yet to hear about the time I tried to guilt my mother into making a bird costume for Rachael by saying, "But mom... she has cancer!"

My Best Friend

2009-10-26T00:27:00.002-05:00

Tom and I decided that we needed some time alone to reconnect and have fun and refocus on each other. We sent the kids to stay with Grandma and Grandpa for the weekend and headed to San Antonio. Last time we did this was a little over two years ago when we celebrated our 10th anniversary and we are both so glad we did it again. It was relaxing and fun and we barely talked about the kids at all. I told my mom this afternoon that we were flirting with the idea of just not coming back and she said, "Flirt all you want as long as you show up."

Tom and I met a little over 13 years ago and I knew immediately that I never wanted to be far away from him. I wasn't looking to get married as I had somewhat recently gotten out of a relationship that pretty much destroyed my faith in myself to make a good choice. But I was so drawn to him. We worked together and as I got to know him better, I began to feel such a pull that it was nearly painful. About six months later he finally clued in to the fact that I am totally awesome and he wanted to be with me too.

What I love about our marriage is that we both still feel so lucky to have one another. I was talking to a friend recently about how usually in a relationship one person loves more than the other. I spent a good amount of time thinking about who that is in our relationship and I don't think there is an answer. I think Tom loves marriage more than me. That's not to say I don't love marriage but I still sometimes think it would be fun to be single. I wonder what my life would be like. Not Tom. He would never want to be single again and I know if something were to happen to me, he would most likely remarry. And I would be happy for him because I know that in a way it would be honoring to me. Our marriage is such a safe haven that he would desire that again.

I love marriage but for me, it's marriage to HIM that makes it so sweet. It's hard to describe my love for my husband without making the internets want to collectively puke but the same things that drew me to him that first moment continue to do so everyday. How could I have known back then? It astounds me.

For us, it comes down to this; We never, ever doubt that we love each other. We never doubt that we don't want to hurt the other. Sometimes we do, but we know it's not our intention. We want the best for each other. We respect each other immensely. We make each other laugh. We have fun and act goofy and still find new ways to enjoy each other.

We have been through major career changes, four long-distance moves, buying two houses, unemployment, financial crisis, and now, a child with cancer and our marriage is so strong for all of it.

This weekend we went to a comedy show and one of the comedians was asking how long couples had been married. One couple was married the longest at 30 years and the comedian was practically in awe of it. He was going on and on about what an accomplishment it was and how he could barely wrap his mind around it. Words cannot express enough the peace that comes from knowing that if, God willing we are both still around, we will see 30, 40, 50 years or more together. Marriage is work and life along the way makes us both realize that we do have to be vigilant and continue to protect it but it is so sweet.

Thank you for marrying me Tom. I am the luckiest girl.

At least it's not a six-month deployment to Iraq.

2009-10-22T16:05:00.003-05:00

Tom and I have made a difficult decision this week that seems a little crazy on the surface. We have decided to do the high-dose IV interferon in Houston. Which means that Rachael and I will basically be moving there for a month. I have many reasons for wanting to do this, even though it means we will be separated and financially it is scary but it comes down to this: We cannot make decisions that we will later look back on. This is a common refrain, especially among Melanoma Warriors because so much of the treatment has mixed results at best. We have to make decisions we know that we will not be able to regret.

We have been offered a trial for Rachael's treatment of interferon. The standard way of administering it has been four weeks of high dose through an IV, followed by 48 weeks of a subcutaneous injection done three times per week at home. The trial would mean the same high dose IV, however the "sub-q" injections would be done only once per week and the intereron would be "pegylated". I asked her oncologist, Dr. H. what this means and he said, "pegylation is a chemical process that prevents a medicine from being cleared from the body as quickly." He said that he believes the 3x per week injection is actually out of the system within a few hours but he thinks they will find that they pegylated interferon stays in the body throughout the week so that she will have at least a low dose in her at all times.

Are there any chemists out there who can explain all this to me?

This trial appeals to me for many reasons. First of all, there is mixed research about the effectiveness of continuing after the one month high dose. The results of going ahead with the additional 48 weeks do not seem to offer much additional benefit. Having said this, her oncologist, as well as the oncologists of the other parents I have spoken to who have children with melanoma all believe we would be crazy to not do it. I've actually written about my angst regarding interferon here. So the idea of a trial which Dr. H. has said it is essentially the same medication and they expect it to perform much the same way and which might just show better results and saves Rachael 96 injections over the course of a year sounds like something I want to sign up for.

I think this is a better plan for our mental health. Because I know the results are mixed I can absolutely see in three or four or ten months into this thing we will have moments of "This is stupid! Why are we even doing this?" Being in a trial that may help pave the way for better treatment will help us in those moments. That thought won't necessarily help Rachael but avoiding the 96 extra shots would get her vote.

Then there is the fact that we can always opt-out of the trial but we only have one chance to opt-in.

There is just the one big down-side to all this and that is we cannot do any of our treatment at our local children's hospital. It must all be done in Houston which means of course the temporary move there for the month and frequent trips (probably once a month with a few overnights here and there) for the next year.

This is going to be hard but I have to say, after my experience in a different - albeit wonderful - hospital, I am honestly really relieved that we won't be splitting her treatment. I know our local hospital is very good and I've heard great reports and if we had started here I probably wouldn't want to go anywhere else. I just feel better doing it all at MD Anderson. It's our hospital.

So, we're working things out and making arrangements and it looks like I will go there on the evening of November 11th. We have the opportunity to meet another little Melanoma Warrior, Chloe, who is 10 years old and was diagnosed when she was 8. I hope we can have dinner and give the girls a chance to play that evening before they return back home on the 12th. On a side note, we are very excited to be sending out Christmas cards this year designed by Chloe! Her angel was chosen this year by the Children's Art Project.

On a completely different note, while the kids were getting ready for school yesterday Marc kept running into my bathroom asking, "Can Rachael wear my belt?" "Can Rachael borrow my socks?" I'm all like, "I don't care," he runs out pumping his fists going, "Yesss!" I hear them being all giggly and cute and when it's time to leave I see that my very different children who I wasn't even sure liked each a few months ago came out all matchy-matchy.

They are really going to miss each other.

Ownership

2009-10-20T00:19:00.002-05:00

We are learning to take the good with the bad. It's humbling but necessary because otherwise, like my brother described it, we could look back at this time as one bad time followed by one not as bad time. Rachael is doing very well but every single day there is something we wouldn't be doing or even be thinking about if not for melanoma. I am finding I need to remind her more often that her life is not bad and there are many blessings. Like dancing with Daddy at a jazz festival. Or not losing her hair.

Something that is hard for any child, and especially one going through somewhat invasive medical treatment is the lack of control. She tells me every day that she WILL NOT EVER have another shot again. Or that she is going to simply refuse to do any more dressing changes and she is very firm that interferon is simply not going to happen. She knows that she has no control but she likes to say it. Tonight she told me again that the answer to something upcoming is "No," and when I told her that she doesn't really have a choice she smiled and said, "I know that, I just like saying no."

Good for her!

I love that that is one of her coping mechanisms. Even though I know I have no control whatsoever, I am going to pretend I have a choice and exercise it. I'm going to totally use this. "Hey Rachael, let's just walk in together this morning and refuse the medicine. Let's tell them that we quit and run away fast before they catch us!" I should have recognized this sooner because even when she was at the height of misery her first day with the staph infection and begging, BEGGING to leave I looked at her and said, "Should I just unhook all this stuff real quick and we'll make a run for it? Those doctors look slow, I bet they can't catch us." She was so miserable but there was a twinkle in her eye at the thought of it.

I believe she's learning that though the things happening to her don't make sense, there is a necessary purpose and so I think that if I really did try to unhook her and make a run for it, she would stop me.

So that takes me to this incredible program offered at MD Anderson and many other hospitals around the world called Beads Of Courage. The concept behind the program is that "Every bead tells a story of strength, honor and hope." From their website:

What is the Beads of Courage Program?
The Program is a resilience-based intervention designed to support and strengthen the protective resources in children coping with serious illness. Through the program children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.
how it works
Upon enrollment each child is given the Beads of Courage bead color guide with a detachable membership card. Their Beads of Courage journey begins when each child is first given a length of string and beads that spell out their first name. Then, colorful beads, each representing a different treatment milestone are given to the child by their professional health care provider to add to their Beads of Courage collection throughout their treatment as determined by the Beads of Courage Bead Guide (available from Beads of Courage, Inc.)

I cannot say enough how much I love this program. Rachael doesn't have any control over what is being done to her body right now and a lot of it is very confusing. But with a simple bead she gains understanding, a sense of ownership and a visual representation of her own cancer journey. I won't go over each bead and what they all mean but I can tell you this... If you ask Rachael, she knows.

I'll be honest and say it does not make getting a shot or doing a dressing change easier but as her beads grow I see in her a sense of accomplishment. It goes from "It happened to me." to "I did it!"

And that is a gift.

There's no place like home.

2009-10-18T02:06:00.003-05:00

I have a lot of non-cohesive thoughts rambling around my head and I feel like I need to mentally vomit.

On November 12, 2009 we are scheduled to start the first of Rachael's interferon treatments. This will last for one year. On Thanksgiving she will be on interferon. And Christmas. And 4th of July and next Halloween. She will spend her 6th birthday on interferon. Next summer she will be on interferon. She will be on interferon when she starts the 1st grade.

Have I mentioned before that cancer sucks?

Anyway, in between treasuring and soaking in these next three weeks, I am busy researching what the best course for her treatment will be. I am not inclined to journal about the choices because this is a decision that needs to be made by myself and Tom and her doctor with the help of a few people on a certain bulletin board (hi MPIP readers!) and I have found that some comments meant to be helpful are in fact, not. But the decisions are tough when the data is so incredibly limited.

Have I mentioned that pediatric melanoma is super rare?

Tonight, my friend Amanda was having a massive girls sleepover at her house and invited Rachael so naturally I was over there as well so I could hang out with Amanda. Because getting to spend almost 24 hours talking non-stop on our last trip to Houston wasn't quite enough and we needed to catch up some more. I was thinking how glad I was that Rachael was getting this fun time because we don't know if she'll be up for it when she starts treatment. But, as I was about to do her heparin flush I noticed that the dressing covering her cathater was practically falling off. Not good. Not good at all.

Long story short, I had to do a sterile dressing change on her and it pretty much ruined her night. I know she was tired anyway and it was a terrible time to do it but we had no choice. It's just heartbreaking and unfair and I'm not sure what the next step after denial is but I'm thinking maybe angry might be accurate. She did bounce back and want to enjoy the movie but the cries in the middle of the dressing change of "I want to go home! I want to go home!" pretty much convinced her that even though she had been having a blast and the movie was good, really, truly, she just wanted to go home. So she's sleeping in her own bed tonight.

And I'm glad.

Introducing my new favorite phrase.

2009-10-15T23:32:00.002-05:00

Rachael's lymph nodes were clear! This was news met with great relief and no regret. I wish we could look inside lymph nodes without having to take them out but we can't. I'm happy to know that even though they probably could have safely stayed put, we are now pretty sure we caught the melanoma plenty early. So, RIP lymph nodes, sorry we had to cut you out.

Dr. H. also looked at a new bump on her elbow that has been giving me anxiety. It started growing shortly after she fell down about a month ago and it looks suspiciously like another mole I was fairly unconcerned about. He said it was "medically interesting" but we could take some pictures of it (they have a staff photographer who comes and takes pictures of "medically interesting" stuff) and compare it against its mug shot in a month. When I told Tom what Dr. H. called it he said, "I don't like that one bit. I want the least medically interesting things imaginable on my daughter's body." For some reason though, the phrase "medically interesting" amuses me. Maybe because I got only three hours of sleep last night.

I decided to take a break from stress and talking about "medically interesting" things and focus on my friend Amanda who was awesome and joined me on this trip to Houston. I feel as though I can barely put a literate and cohesive sentence together right now but I loved seeing 3 AM with her.

Anyway, Dr. H. is not convinced it is a mole. He said possibly a wart or even some sort of "medically interesting" thing caused by trauma. This is when I pointed out that it had started after an elbow scrape. Either way, I feel like I have given him the problem and now even though I will continue to look at it obsessively, I don't have to stop breathing anymore while imagining a conversation that went more like this, "OH MY GOD!! CALL THE SURGEONS NOW!!"

Maybe that's why "medically interesting" seems almost cute.

Great!

2009-10-14T00:17:00.001-05:00

A common and understandable question I get on a daily basis now is "How is Rachael?" It's usually stated in a somewhat somber way and it is difficult to answer the "right way" because though I know the asker wants to hear a positive response it seems strange to say, "She's great!" It's even a bit awkward to answer that way when say, my co-workers ask me, seeing as I just missed six days of work because she was decidedly not great.

Yeterday my Aunt Donna drove us home from Houston and I think she was a little blown away with how normal and happy and totally fine Rachael is feeling. I had to call my boss a couple days ago and Rachael was near me and giggling and generally being disruptive but my boss said a couple times that it was so wonderful to hear her laughing voice.

What is strange? Is it strange that people are surprised by her ability to quickly put the bad behind her or is it strange that I feel something like pressure to be somber along with those concerned? It's weird. I appreciate the concern! Covet it even. I LOVE that people are interested and want to know and I don't want anyone to stop asking but the surprise sometimes looks like disbelief. I am truly no longer in denial but when things are good, they are good and this is a good week. Last week... not so much but last week is gone.

It's different with kids. Everyone says that and I see it firsthand everyday that she is not affected by the stress of her situation the way the adults around her are. My parent's-in-law showed me a passage out of the book "My STROKE of INSIGHT", by Jill Bolte Taylor, Ph.D. It sums up what I'm trying to say perfectly.

"It's important we realize that we are capable of feeling physical pain without hooking into the emotional loop of suffering. I am reminded of how courageous little children can be when they become extremely ill. Their parents may hook into the emotional circuitry of suffering and fear, while the child seems to be adapting to the illness without the same negative emotional drama. To experience pain may not be a choice, but to suffer is a cognitive decision. When children are ill, it is often more difficult for the child to handle parental grief than it is for the child to endure the illness."

Rachael absolutely has had some really painful things happen to her and there is more pain to come as our year of interferon approaches but she does not suffer. I pray that does not change.

Tomorrow night I'm headed back to Houston for an appointment with her oncologist on Thursday. I'm nervous because supposedly they should have the path results back from her lymph nodes and historically (like the one other time) when they don't call ahead of time it's because the news isn't great. Maybe they don't have the results back or maybe they just got busy and forgot to call or maybe they didn't think good results would be any sort of surprise so they just figured they would wait until I got there. This time though I'm coming prepared and bringing one of my best friends with me and our hope is that it will be an unevenful trip and we can just have fun.

And when we get back and people ask how Rachael is doing we will say, "She's doing great!"

Reflections from home.

2009-10-12T23:42:00.000-05:00

Several weeks ago I found out that Rachael probably qualifies for Make A Wish. My reaction to that was, "No. No, she can't." My friend put it perfectly. She said, "You never thought you would have a 'Make A Wish Child'." Exactly.

I've had several opportunities since finding out that she might qualify to look into it but haven't done so. I can't even pinpoint exactly why I just knew it didn't feel right. After our experience in Pittsburgh though I made a decision that we would go ahead and take the good with the bad and I would look into it and today when we went to MD Anderson (yay our hospital!) I did just that and they should be contacting us in a few weeks. Our social worker said that she absolutely qualifies because of her diagnosis and age. She was really reassuring and said that there is a bit of stigma associated with Make A Wish that a child has to be terminal to qualify which just isn't true and she said many parents don't take advantage of it because they don't want to think of their child as a "Make A Wish Child". Has she been listening in on my phone calls?

Driving home today I was reflecting on the last few months and I can say that I am now fully out of the denial phase. I think many things contributed to this but there are three things that happened this week that have changed my perspective on my daughter's diagnosis.

First, we had our first true complication. The procedures and pokes and pain and cries before this week were all pretty predictable and sort of expected. It was within the range of normal for what she needed to have done and though they were difficult, once they were over, they were over and she bounced back. Last week was different and it was so difficult and unfair and hard and at some point during the fevers and hurt and worry I decided that Rachael would get anything good she could out of this experience.

Second, a woman at the hospital today had a hat on that said "Cancer Sucks". I love that and have said it many times. There are those that think it's crass and we shouldn't say things like that but it TOTALLY DOES SUCK! Acknowledging that it sucks gives us a sense of power and freedom that I can't even describe but it's sort of like when Rachael doesn't want to be told that she is brave because she isn't feeling brave or like giving her the freedom to scream at the top of her lungs when she is in a whole lot of pain. IT SUCKS! IT'S BAD! But here's the thing. That's not the end of the story. The woman with that hat said something that has been repeated to us several times. It's temporary. It's not forever. The treatments that we are going through are lousy and disruptive and generally sucky but our real life is awaiting us at the other side. It was like an epiphany today. Just because this is temporary and her prognosis is pretty good does not make it suck any less. Just because we believe and hope and pray that all the cancer is gone from her body does not mean I have to deny it was ever there. Just because the treatments she will need to endure are (hopefully) preventative in nature does not mean they are not as hard as those treatments that are curative. Even though we expect to be okay, CANCER SUCKS!

My last shred of denial was stripped away as I was driving home tonight while I was reflecting on our journey so far. It's hard to put it into words but to oversimplify my thoughts... our life has changed. I no longer feel like the same person I was a few months ago. The transformation was slower but it's nearly as profound as the one I had between before having my first child and after. I know in the early days, this change will be more apparent and as time goes on I will go back to "normal" even if it is a new "normal" but it will be different than Before. Rachael has changed, though we won't ever know how because she is so young. But her life will be forever affected by her diagnosis. Tom and Marc are changed even if I'm not even sure how yet, but there are differences. Many of them are good and surprising changes but ones that would not have happened if not for this journey.

In many ways I feel very lonely on this road even while we have a crowd of supporters lining the streets for us. There aren't many who join us on the actual path though and I feel a deep need to draw close to them.

I want Rachael to make her wish and participate in that club because, whether we want it or not, we have already joined.

What a difference a day makes.

2009-10-08T00:52:00.000-05:00

I am clean. I am wearing clean clothes. I will not hear beeping in the middle of the night and we won't be woken at 7 AM by surgical rounds. Thank you Pittsburgh for your hospitality and your new hospital is beautiful. You have hired some of the best nurses in the world and even your food is pretty good but oh am I happy to be out of there!

We were discharged this morning and we are in Maryland visiting family. Rachael is happy and back to her normal feisty self and oh, did I mention... I'M CLEAN!!

This experience has brought so many things about what we are fighting home for me. It has solidified my resolve to advocate for my children. It has given me a renewed appreciation for my support team. And I am so glad it is over. I am going to take a few days off from blogging to focus on family but another thank you is in order first.

Dean, thank you. You are the most amazing brother ever and I hope Rachael grows up and marries someone just like you. I'm sorry I tickled you to near death when we were kids and threw rocks at you and even occasionally tried to poison you. I will take this experience and teach my children how important it is for them to love one another because you never know when one might be called to save the other. I really don't think I could have handled this week without you. I know you say I could have but it is the strength that you gave me that allowed me to be in a place emotionally where you could overestimate me. I love you.

Goodbye Drain!

2009-10-06T16:20:00.001-05:00

Just a super quick update to say that her drain is out, she was sedated and it went PERFECTLY! We should get discharged tomorrow. More details later.

Day 4.... Morning

2009-10-06T08:21:00.002-05:00

Rachael is sleeping after being examined twice already this morning. I'm hoping it's because she was so tired but she seems to be hurting more today. The catheter site is hurting her but it's not warm and she does not have a fever. Maybe it's because of the adhesive. Maybe because the stitches were ripped out. Maybe it's something more, but it wasn't even that painful the day they put it in so I'm concerned.

We are waiting again. This time it's for anesthesiology. We have to see if they have an opening today. That sentence was painful to even write. "See if they have an opening." If they don't, we're here AT LEAST another overnight, possibly two. If they can get her in today then we'll probably have to stay one more night. As we wait she cannot eat. Again.

I met another mom a couple days ago and she said that she was in the middle of one of her shorter hospital stays. "So far," she says, "it's only been 11 weeks." God.

I would ask her how she does it but of course the answer is what choice does she have? I met another mom with TWO children with cystic fibrosis. She has to split time between two hospital rooms at times. And even this woman says that she can frequently look across the hall and be thankful her child doesn't have what the kid in the next room has.

There is a six-month old baby in the room next to Rachael's. She is awaiting a liver transplant and the nurses lovingly call her their "glow worm". She is so yellow it is honestly frightening. She has been there since birth.

So yeah, four days so far. It's hard and it's not fair and Rachael is too young but she is in the company of so many children... so many... who would trade places with us for anything.

Today, when you think of Rachael and pray for her, remember the other kids. Is there even enough prayer out there to compete with the suffering?

Yesterday I saw a family coming in to visit another child and there was a girl just a little older than Rachael visiting. She had on a pretty dress and cute shoes and her hair was freshly washed and in braids and it was the first time I felt a pang of jealousy that my child isn't as healthy. I don't think I took my kids health for granted but I miss being mostly unaware of the suffering. I miss thinking bad stuff doesn't happen to us. I miss having a carefree daughter who would think a visit to the hospital is an adventure.

Our lives are different now but what of those families who don't have a church family loving them? What of those families who don't even have enough faith to afford the luxury of questioning? What of those families who don't have hope of leaving shortly after Day 4? Remember them today.

Are we still here?!

2009-10-05T22:38:00.003-05:00

This was in the top three of the longest days of my life. I can't remember any other day being longer but I'll give my 36 years the benefit of the doubt and guess that maybe somewhere, sometime I had a longer day. Except probably not.

I cannot possibly journal about everything that happened today because to relive it all would be tantamount to sawing a plastic knife over my wrists. So in the interest of sanity and brevity I will break this day into two categories. The Good Stuff and The Bad Stuff. A prize for guessing which list is longer.

The Good Stuff:

** Rachael woke up feeling GREAT.

** We got to go to the playroom and made art for a bit.

** I got a laptop in the room.

** Rachael woke up feeling great!

** I was able to get some MUCH NEEDED clean clothing items.

** Lunch was tasty.

** We have had the BEST nurses. You hear of people relying on their nurses and loving them and Oh My God is it true. Bless you women, we love you!

** Dean is here to spend the time with Rachael that I can't because I'm taking care of business.

** Rachael woke up feeling great!

The Bad Stuff

You know what... I don't even want to go into the bad stuff. Rachael was feeling great today and even though we were delayed and I had to be on the phone for hours. No. HOURS AND HOURS AND HOURS. And even though we finally got an answer on how they will proceed my relief is tempered by the fact that I have another battle in front of me tomorrow. And even though I don't want to be here and I'm still not sure we're even going to get to leave tomorrow I can say that she had a day where the pain was minimal, she's back to her sunny self and she's here.

Her doctor said today that they were very concerned in the beginning that she was going to go downhill and fast. So ultimately I can be thankful that she is here. And if I don't journal all the crap then eventually the memory will fade and I will simply be left with a feeling of joy that she is okay.

Tomorrow they will remove the drain. They want to do it bedside and I am going to fight them to sedate her. Pray for the doctors to be reasonable and for there to be absolutely none of the complications that they fear.

Thank you my friends and family. Thank you for standing in the gap for us.

I would use harsher language if this blog was completely private.

2009-10-05T06:46:00.006-05:00

7 AM this morning one of the surgical residents came into our room and turns on the bright light. Then she takes Rachael's drain and PULLS ON IT. This is the most painful site on Rachael's body so of course she cries out and is then whimpering and trying to protect her body. Then the woman has the audacity to ask Rachael if she can touch the site and Rachael says "NO!" I said to the surgeon, "She is in pain and she doesn't trust you now."

This woman turns to me and decides a lecture is in order. "We have to do an exam and be able to touch it to see if it is warm. We need to decide if blah blah blah and blah blah some more so maybe we can send someone else in here that she will (and she actually uses the quotey fingers here) 'trusts'."

Then she waltzes out the door and slams it.

I went to her nurse and said, "I don't know if that woman is a student or an actual part of the surgical team (found out she's a resident. Impressive.) but I don't want her near my daughter. And in the future can you note in her chart that she is in PAIN and if a doctor wants to examine her they can do so gently. And if they want to do another ultrasound on her today she will get Demerol or something else equally strong to help her. We are NOT talking a little Motrin." Her nurse was very understanding and obviously felt terrible for Rachael. She made the note in her chart.

I am officially in Don't Screw With My Daughter phase.

Staphylococcus Sucks

2009-10-04T20:16:00.004-05:00

When I sit down to write a journal entry I try to capture where we are in the moment and if I can, I like to find humor in the moments. Unfortunately, I can't find any humor in the last few days.

I expected my next journal entry would have pictures of our long-awaited family vacation to celebrate Tom's parent's 50 year anniversary and I would have pictures of the kids doing fun things with their cousins while we were at Deer Valley. Instead we got a one-way (so far) trip to Pittsburgh Children's Hospital.

With her doctor's permission, we headed to Maryland on Thursday, which was a vacation nightmare in and of itself. Long story short, after being delayed over three hours because of bad weather in Dallas we got to Maryland after 1 AM to find that our luggage didn't make it. So Mommy sob sob sobs and we get to bed around 3:30 AM. The next day (Friday) we get to take an hour and a half (one-way) drive to the airport to retrieve the luggage and finally our vacation will start. Family arrives. Hugs, kisses, cousins playing and we head to Pennsylvania Friday late afternoon and arrive around 7:00 PM. We had a lovely anniversary party and the kids got to play. We put them to bed around 10:30 at night and Rachael felt great. She was having a sleepover in her cousins cabin and life was good.

Sometime between 2 and 3 AM my sister and brother-in-law brought a crying Rachael to our cabin. She was in pain. I took her temperature and it was normal and gave her some tylenol with codeine. At 5:30 AM I took her temperature again and it was going up so I told Tom that I needed to take her to a hospital. I went to the Myersdale Hospital which is a small facility with an emergency room and they told me she needed to be transferred to Pittsburgh Children's because they simply did not have the facilities to handle her care.

Five hours after getting to the Myersdale Hospital we started our three hour ambulance drive to Pittsburgh. After seven hours in the ER, we finally got settled in a room.

Yesterday was the most I have broken down yet. Like Amanda said, Rachael was devastated. She begged me to leave. Over and over. The things she endured would have been barbaric if they were not (in most cases) necessary. Three times, with her screaming like a caged animal to stop they tried to get an IV in her to no avail. She threw up three times. She was feverish and in pain. She was beyond starving and couldn't eat. It was horrible and all day she cried, "Do we have to stay here today? Why do we have to do this today? I'm missing all my friends. Why does this always happen to me?" Oh, and when they transfered her from her ER bed to her regular hospital bed the orderly... or whoever he was... didn't unhook her IV line or make sure it was long enough and they ripped a couple of the stitches out of her catheter. I was INFURIATED. I did not scream or yell or swear at the guy but he knew under no uncertain conditions that I was beyond angry. So on top of all the other crap she had to have someone from the IV team come down and change her dressing while it's sore and tender and has RIPPED STITCHES HANGING FROM HER SKIN. The kicker is that she had been sleeping when it happened. How's that for a wake up. The woman who changed her dressing was an angel. I don't mean she had a sweet personality (though she did). I mean she was heaven sent from God above and if it wasn't idolotrous I would consider worshipping her. She took off the adhesive from Rachael's dressing without receiving even one "Ouch!" from the child. That was the first true miracle of the day.

Anyway, it's all long and irritating but we know she has a pocket of fluid where the drain is going in. They know this because they did an ultrasound on the area which was pure hell. She was in so much pain and just screaming. If she had anything in her stomach she would have vomitted from the pain. That's when I decided that they will NOT take that drain out unless she is sedated. Period. I will not sign the consent.

What they can't decide is how to get the fluid out. They keep hoping the drain will do it's job and they won't have to remove it surgically. The problem here is that it isn't their surgical site so they want to be very conservative about opening it up. In the meantime, Rachael went almost 48 hours without food before they finally decided that they would officially "wait and see" until morning and we could feed her.

I want to say that she has recieved excellent nursing care here. They have been sensitive to her sleeping and very gentle with her. I know her doctor's are trying to do what is best and though the timing is getting frustrating I do believe she is in good hands here. We know she has a Staph infection but so far it does not look like it's in the blood. She is receiving IV antibiotics every six hours and her fever finally broke today.

I don't know what tomorrow holds. I suspect more surgery which means we will likely be here another overnight. The airlines were completely unwilling to bend the rules about non-refundable tickets so we will have to buy two more plane tickets to return home. My brother is here so I have a ride back to Maryland and some much needed support (which is why I can be here updating).

I am glad we have the care we have. I am glad we live today and not 100 years ago when my child would have died. I am glad I have a boss that is understanding and gives me all the time I need. I am glad we have insurance. I am tired of being glad for things that come as a result of something that royally sucks.

I am having a hard time praying lately. I don't understand.

Update

2009-10-04T09:14:00.000-05:00

Thank you Amanda for updating. We will be staying at Pittsburgh Children's Hospital at least one more night. She is doing better today which can I just say THANK GOD! Yesterday was by far the hardest hospital stay yet. I'll give more details later, I just wanted to quickly say that she seems to be improving. We still don't know the culprit and she has a few weird symptoms but at least she is not in so much pain.

Urgent Prayer

2009-10-03T08:35:00.000-05:00

This is Danielle's friend Amanda updating for her.

The Adams left Thursday for a long weekend to see the extended Adams family. Rachael has an infection and is being transferred to the nearest children's hospital about an hour and a half away.

To say that they are devastated doesn't begin to describe it... Rachael is in a lot of pain and is hungry. She wants to play with her cousins and see her grandparents. Please pray for healing and comfort.

I'll update when we know more.

Yes you are.

2009-09-30T23:58:00.001-05:00

I've been naughty. Can I have my cookie now?

2009-09-30T00:04:00.001-05:00

We're going to take a break from our regular programming to bring you an episode of "What the Heck Is That Kid Thinking?!"

Ah Marc. I haven't mentioned him too much here because this blog was started to update family and friends on Rachael and help me journal through my feelings. Here are a couple pictures of my son.

He's really cute, right? God made him that way so we would be inclined to keep him and not send him back. Ha ha. Just kidding. Mostly. Now before anyone thinks I have a favorite child in Rachael I want to assure you that is not true. I love Marc with a passion that makes me cry. Loving him has in fact brought me to tears more times than I can count because I'm always afraid I'm not loving him enough, whereas Rachael has always been easier. They are both very strong, independent, smart kids and so that can be challenging but Marc has always been a bit... more. Parents of spirited kids are all nodding thier heads now. They understand.

Anyway, he has matured so much in the last couple years but continuing to discipline him like I did when he was younger is not working. I am implementing stronger consequences and he's not exactly saying, "Thank you mother for taking my toys away and giving me extra time in my room so I can consider my actions and change my wayward ways." No, no. He is going for the big guns!

"You don't love me anymore!"
"I'm just useless to this family."
"I wish I was never born!"

Tonight I looked at him and blandly said, "This is a consequence. It doesn't mean we don't love you. It doesn't mean you are useless. It means you did something you should not have done and now you have a consequence. Deal with it in your room."

Let me stop and say that it's not like we haven't had consequences. We most certainly do, however, I think as he gets older they have to change and become, well... harder. I wouldn't give him the same consequence in kindergarten as I do now that he is in the 3rd grade. He should know better now. Many will disagree and say if I had been tougher when he was younger I wouldn't have problems now but we'll just have to agree to disagree. I think you do what works at the time and right now, harder consequences are going to work. Or I might reconsider the cuteness trade-off for not sending him back. But I digress.

So, we've been implementing harder consequences and I'm not sure he quite gets it. As a matter of fact I'm pretty certain he doesn't get it and we will have to go back to "Reaping What You Sow 101". Tonight when Marc was exiled to his room for yet another "yellow day" because of playing around at school he comes out and says, "Mommy. Can I least have some entertainment?"

Thank You

2009-09-28T23:12:00.002-05:00

We have been so showered with love that we just sit down at night and shake our heads. We don't even know what to say to each other, much less those who have given so generously to us. Gifts for Rachael and Marc both, financial help, meals... not to mention the prayers. It is all overwhelming and I want to thank some specific people.

To my dearest friend Amanda… I have needed you so much through this and you have been there for me every time. Thank you for immediately organizing the care of our temporal needs. I know I will lean on you more as this year progresses and I want you to know that I love you.

Dr. Dubberly… you have always taken me so seriously and your act of immediately identifying that mole as suspicious rather than simply looking at the odds and dismissing it probably saved Rachael’s life. You are the best doctor in the world and our family is forever indebted to you.

Tim and Susan… thank you for what you did. We will never forget that.

Lisa M… the care package you sent arrived the day before we went to the hospital and the kids were ecstatic but it was probably the biggest comfort to me. It was such a beautiful gift and showed me that people truly love us.

Mom and Dad H… you have been willing to drop everything to be with us when we needed it. I never once had to worry about Marc and that was huge. Thank you Dad for keeping me company on one of my trips to Houston and Mom, a special thanks for decorating Rachael’s room. She was so happy to be home and that made it even more special.

Mom and Dad A… the gifts make it feel like Christmas around here! Thank you for your willingness to entertain anything we are thinking of trying and giving us the possibility of even thinking about other options with your willingness to help. I hope we never have to use it but it is a tremendous comfort to know it is there.

Amanda, Lauren, Skip, Greg and Brad… thank you for praying over us that night. It was incredible.

Dean….thank you for all your advice about her tube. I was totally prepared thanks to you. And Jen, thank you for being there for all my questions.

To those who have already brought meals and those who will do so when we start interferon… my family especially thanks you! That is a true blessing.

To the prayer warriors… you all amaze me.

Tom… you are my best friend and I wouldn’t want to walk through this with anyone else.

Jesus… thank You for loving me despite my weaknesses and thank You for being Rachael’s friend.

It's my journal and I can be long-winded if I want to.

2009-09-27T21:06:00.009-05:00

Rachael is doing fantastic. So well in fact that both kids were driving both Tom and I a bit batty today. They missed each other so much they haven't stopped fighting. This morning I reminded them both of all the tears and heartbreak they felt when they were apart. I mean Rachael was downright lovelorn... if lovelorn could refer to a brother. Everyday we had to hear about how she misses Marc and how she wants Marc and how Marc comforts her and Marc is the only one who could possibly understand! Two minutes into the happy reunion it's all "But that's MINE!" and "Don't touch that!" and "STOP HUMMING BECAUSE YOU ARE MESSING ME UP!!" But they no longer have me fooled. I just ~~yell at them both to go to their rooms now~~ smile contentedly when they are fighting and say peacefully, "You two love each other so much and this is just your way of showing it."

Actually, when Marc got home last night he was so sweet with her for those first two minutes. He was super careful and concerned and actually showing interest. But then she was acting so darn HEALTHY that there wasn't really need for all that compassion. He wasn't there that morning when we had to remove one of her bandages and it took an hour because of the pain and screaming and crying out in agony for her brother. He didn't witness her being unable to even push herself up in bed because just the act of moving any part of her body brought back all that hurt. He missed the whole puking after surgery thing. He just saw this kid who he is under the impression he needs to feel a bit bad for on some level touching his new leggos and acting all annoying as usual.

I will try to commit myself to enjoying even these times because when she starts the high dose interferon then I think he will see exactly what fighting this disease can do. Maybe for now he needs to save his compassion.

I was actually talking to Tom about this the other night... what fighting melanoma looks like. It is hard to not feel on some level that we have done this to her. Her body looks almost war torn right now. She's got the big scar on her arm, a smaller scar under her arm with a tube sticking out of her skin. She has the catheter on her chest and another bandage on her arm where they tried to put it in and failed, a little bandaid covering her arm where the IV was and marker notes on her saying where to cut. She's going to be scarred and everyday we have to do something to her like clean something or drain stuff or inject heparin. And meanwhile she is doing her best to just get better and be cheerful. And we keep interrupting her goal to move on to say, "Okay, now is a good time to put you through an hour of agony as we remove a bandage that must come off."

She didn't have headaches or a fever that wouldn't go away or a suspicious chest cold that lasted for weeks. She was completely healthy and happy and normal with just a little mole. And now she has been cut and poked and she can't move quite as well and I have to ask her each night if she needs codeine. And I think it's going to be much worse in a month when we start the interferon and she feels like she has the flu everyday. Because seriously, she is recovering amazingly well. She will be at school tomorrow and ready to run around and wrestle again in a week. All this to say that I have to remind myself that what she has is serious and if we had done nothing she would have died. I have to remind myself of her prognosis which many say is great but I say is not 100%. Fighting makes her sick and I'm so glad we don't have symptoms of her cancer, just of her treatment but it does make it hard to shake the feeling that we are doing it to her.

This morning our pastor prayed over our family and others who are in difficult situations - which was just about every person standing there and then a few members of the band played this song which was written by Jeremy Camp shortly after his wife died. How I can relate to this....

The only place I can go is into Your arms
Where I throw to You my feeble prayers
Well in brokeness I can see this was Your will for me
So help me to know that You are near

My hero.

2009-09-25T22:09:00.004-05:00

It is goooood to be home! Rachael is feeling a whole lot better and Tom and I are going to have a drink now that she is sleeping. She is still hurting at times but she can move much more than she could yesterday which helps. Last night she kept complaining of a mosquito bite on her butt but it was just chafing from laying on her back for so long without being able to turn over. I spent a good portion of my time rubbing her butt. Because that's what moms do, rub their kid's butt all night.

I have gotten a lot of encouraging notes here and on my facebook and a couple through email and it seems a lot of you think that I am "amazing" or "strong" or whatever. I do not feel the least bit of that, and when I witness her going through so much... and the pain. Last night she had to pee really bad. To the point of almost screaming about it but she hurt too much to be able to get up. And the bed pan wasn't working for her because she didn't trust it. It was awful. I finally got her up and the pain was so intense. She looked at me at one point and her face was white as a ghost but the skin around her eyes was sunken and red and it just about killed me but she did it. And today she woke up and told the nurses that she was "good" and through the bouts of continued pain and discomfort she laughed and giggled and as much as she could, she played. Now I know that kids are resilient and bounce back and all that but this little child of mine... she has JOY. And that friends, is unchanged. THAT is amazing. THAT is strength.

What I do is absolutely no different than what any mother would do. What choice do any of us have? But to go through it in the way that she does is something to behold.

Final update of the day.

2009-09-24T17:30:00.003-05:00

She is in her own room now and watching the Disney Channel. She's been having pain but God she is brave. I can tell all of you that but we are on strict orders to not say it to her face anymore today. She told me that she doesn't feel brave and she doesn't want to be brave. The nurse said, "Oh, don't cry," (in a comforting way) and I looked at Rachael and said, "Baby, you cry all you want." Just like her last surgery though, morphine and some jello makes it better. Except they didn't have jello. Only popscicles. Even better!

She was under longer than they expected and she did throw up a little when she woke up. Then she drifted back off and I had to leave her to go to a stupid class. It's actually a very important class and not stupid at all but when I was leaving her before she was even aware that I was there for her, it felt stupid. So I'm sitting in said class learning that this is going to be Way More Complicated than I anticipated and I get a text from Tom that she is in pain and crying for me. Then another that says she really wants me. Thing is, if we want to take her home, I have to take TWO of these classes so I really needed to stay. A few minutes later he texted that she was better and then that she was sleeping.

She was still out when I got to her room but she woke up quickly. She was hurting but wanted me to lie with her so I did, halfway hanging off the bed but we snuggled and she asked about all the tubes and wires coming out of her. That's when she told me about the chest x-ray they had to take and how they kept saying she was brave but she didn't think so because she cried and she was tired of being brave. Could she have broken my heart more?

After that she asked to speak to Marc so I thought, "Why not, might distract her." Ya'll will NEVER guess what they talked about. Wait for it. Wait for it..... Farts. That's right, they made goofy noises at each other and told one another "Ah! I just farted!" Then for some reason I think they got annoyed at one another. So I expect things will be back to normal soon.

Thank you thank you thank you for your words of support and encouragement and especially your prayers. We told her surgeon today that she is one prayed for woman and she said, "Oh, I know it!"

2009-09-24T13:11:00.001-05:00

She's out of surgery. It took longer than I expected and I had a moment of heart-stopping panic when someone we haven't seen came out... in a suit. And then a doctor we didn't know was next to him. Turns out it was just a change of shift in the surgery waiting area personnel and the new doctor was the one they called in to do the central line. Everything went just fine though and they are waking her up now.

Gotta run... they are calling us.

2009-09-24T12:16:00.001-05:00

This isn't much of an update but I have a lot of nervous energy right now and it gives me something to do. Turns out the veins in her arm are too small and they couldn't get the picc line in. So now they are doing a central line. I'm not 100% sure of the difference and it seems they are nominal. The outside of it will be on her chest rather than her arm and it will leave a small scar. Small complication but it's delaying her getting to recovery.

2009-09-24T11:02:00.001-05:00

First part of surgery is done and according to her surgeon she did great. There should be no nerve damage and she tolerated it very well. She's getting the picc line placed now so hopefully we'll get to see her in about an hour. Sounds like we will get to come home tomorrow. Yay!

Sheila told us earlier that when they went back with her she was animated and talking to everyone about Disney. After they sedated her, her team was amazed with how well she did. Sheila said they were all commenting on what a brave little girl she is. It's so true.

Surgery Day

2009-09-24T07:43:00.002-05:00

Rachael was just wheeled into surgery. She was not scared and didn't even seem anxious. I took pictures and I wish I could publish them now because you can see her smiling and playing with the toys that Miss Sheila brought in for her. Miss Sheila is a Child Life Specialist and she stays with the children when they go into surgery. She is the surogate mommy and she does her job well. Rachael feels very comfortable with her.

We should get updates each hour and I will pass it on.

So much for an internal clock.

2009-09-23T23:19:00.001-05:00

Today didn't start exactly as planned. Yesterday was exhausting so at 11:00 last night Tom and I decided rather than pack we should go to bed and get up early. Because that's always a good plan.

The idea was to wake at 5:30 so that we could get on the road by 7:30. In hindsight even that was a bit silly as it was going to take us more than two hours to get ourselves and Rachael packed, Marc ready for school, ~~the slovenly cesspool of shame~~ my van cleaned out and the trash emptied from my bathroom. Why empty the trash in my bathroom? Because my mother (hi mom!) is staying in our house to take care of Marc and there are certain things that go into bathroom trash cans that your mother doesn't need to see. So as you can see, even two hours was a lofty goal if we wanted to leave at 7:30.

Marc was the first up this morning. How is it that our son got up before our 5:30 wake time you ask? I'll tell you how. Because we all overslept and it was 7:06. If you're wondering, we didn't make our goal.

The rest of the day went fine though. We obviously were very late but the staff at MDACC are incredibly understanding. Something about dealing with parents of children with cancer all day that makes them very accommodating.

Our first stop was with Miss Tony who is the lucky lady with the job of sticking all the kids who come in with needles. This woman is so wonderful though that the kids still love her. She spends day in and day out putting needles in children and she has a wall of "love notes" from kids lining her office. That is one special lady. Rachael opted to have her IV line put in today so that she wouldn't have to get stuck again for the rest of the time. She was scared as she always is but she is beyond hiding her face in my chest. Now she watches. And let me tell you all... the girl did not even flinch. The second it was over she was laughing and joking and moving onto more interesting things. My five year old is getting very used to needles. Sad but useful I suppose, if she will be stuck weekly for 48 weeks.

After that we got assessed by anesthesiology to make sure she's healthy for surgery and doesn't have loose teeth. Do you know that if you go for surgery will get asked no less than 17 times if you have loose teeth? It's like they are trying to give the child a complex. "No, the tooth fairy STILL has not visited me, thank you for reminding me that I am an underachiever when it comes to tooth loss."

Then we went to the place where they will teach us about the picc line. I get to take two 1.5 hour long classes in the next two days and then I have to demonstrate that I can do whatever they are going to show me for those three hours. We haven't even gotten to the tube that will be in her draining her "fluids". I say it like "fluids" because what I really mean to say is gross stuff with blood in it but "fluids" is better for mixed company. Rachael and I agree that the whole idea is disgusting so we're not looking forward to it. Can I just say right now that I am the mother who gets woozy when her kid has a particularly bad skinned knee? I'm going to be flushing lines and changing dressings and draining "fluids". We'll keep a phone nearby and make sure the kids know how to contact Daddy in case Mommy passes out. I spoke with my brother earlier this week (hi Dean!) and he had to do this for his beautiful new wife when she was recovering from surgery and he assures me that I'll get used to it. He seems to forget that he was the one who wanted to hear the details from mom's work at the nursing home. Not me. I didn't want to hear any of it. But... it's my daughter and I will be able to do this. We'll just keep Daddy and 911 on speed dial.

After all that it was off to dinner and a movie. "Cloudy With A Chance Of Meatballs" is really gross in case you are wondering. I actually did feel a bit nauseated a few times (hi Jason!). Tom is laying with her now and I'm getting this few minutes to myself.

She's the first patient of the day tomorrow so our arrival time is 5:30. I'VE ALREADY PROGRAMMED A WAKE UP CALL MOM. I'm feeling peace. I'll be glad when it's over but the anxiety of making the decision and then getting here is over. We are in motion and what will come will come. It is now in God and her surgeon's hands. I trust them both.

I'll try to give quick updates tomorrow so check in. Let me know if you are reading, I may not always respond but I love seeing your comments. Thank you friends for loving us, and especially Princess Rachael.

Your light will shine when all else fades

2009-09-22T22:57:00.004-05:00

Tonight five men and women gathered in our home to pray for Rachael and our family. Some of them were the closest of friends. Others we barely know. But in Jesus and in our love for one little child who loves her Heavenly Father we were united. It was some of the most powerful prayer I have ever been privileged to hear and to have it poured over our family will remain with us a long time. Others joined us in spirit and right now I am feeling a deep intimacy with God that has been unmatched in my life.

One of the things about melanoma is that it is silent. It lurks and no one knows why or how but something might trigger it to grow and then it can become a killer. We have been given a prognosis for Rachael that says based on adults – and we know that children tend to do better though we don’t know why – she has a 50-75% chance of being disease-free in 10 years. But we won’t know. It might be inside her.

Inside her.

I’ve been reflecting on that a lot. I’ve mentioned before that it bothers me that she will never be able to donate blood. I think I know why that bugs me so much now. It’s like she is tainted on the inside.

Friends, let me tell you right now…. My daughter has Jesus inside her. He is her friend. Her comfort. Her salvation. And He will consume her inside and that will show on the outside. She has asked me why God has allowed this. She questions but she still has complete faith. Her faith is stronger than mine and she inspires me. I tell her that I don’t know why but I do know that God is good and He loves her.

I pray that our family will be eternally changed for God’s glory through this journey and that He will consume us all from the inside out.

I do reserve the right to change my mind but for now it is made up.

2009-09-21T20:29:00.006-05:00

I posted this on the forum that I mentioned yesterday....

Let me start by saying that this is a hard decision... No, it is the hardest. I'm sure you get it.

A few things have factored into what Tom and I have decided. We will go ahead with treatment as planned for Rachael.

1. I could seek 2nd, 3rd and 4th opinions and I would still be in this same place of having to decide because there will not be a consensus.

2. This is MY child and though I know it isn’t “easy” for someone else to make a decision for her, I'm the one who wants her here until she is old more than anyone else. Studies and experts and other survivors may not agree on what is the best course, but the doctor who has met her and looked me in the eye has said that this will give her the BEST SHOT. I spoke with him tonight and he told me that even if it gives her until 2012 until re-occurrence instead of 2011 we will have one more year not only with her, but also one more year for research to catch up with the disease.

3. She is five. Quality over quantity looks different when you are 50, 60, 70 or five. We want quantity and because of her age, she has a better chance of the quality not suffering like it might if she were older.

4. I had peace about the decision to go with the prescribed treatment until I began questioning it. I believe in questioning and researching and learning as much as one can before making any decision - and even more so for one so monumental. Having said that, every ounce of peace I had went away when I started questioning it. After speaking with her doctor, hearing what he had to say and deciding to continue with his recommendation the peace has returned. I can only believe, with hundreds of people praying for us, that this peace is something to be trusted.

Being a parent who believes in co-sleeping, extended breastfeeding, delaying immunizations, avoiding medications and eating whole foods (when the kids would eat them anyway!) the decision to have her lymph nodes removed and then giving her interferon is not one I go into lightly. I wish it were cut and dry but it is not. We have to make the best decision we can and like Catherine said, we can't look back. If we don't do this, I KNOW I will continue to look over my shoulder.

I thank you all for your prayers, well wishes and support.

God Bless.

2009-09-21T17:25:00.001-05:00

Catherine Poole (whom I quoted in my last post) is assisting me in obtaining a second opinion. This is a tricky disease without a lot of absolutes and whichever path we choose will ultimately be the one that WE believe is best for Rachael. I think we are leaning towards a visit to another institution. This is in no way because we do not trust MDACC or her doctors there but even Baylor, Mayo and MDACC's doctors could not come to a consensus on what the original mole was before the biopsy. We want biology to have absolutes but there is still a lot of unknown with melanoma. Catherine did want to assure me of one thing and asked that I pass it on. She said, "I support whatever a patient decides is best for them (not just against interferon)."

I am very grateful to her for her willingness to help us in that process.

Written so Rachael will know we did not approach this lightly.

2009-09-20T22:01:00.012-05:00

A week ago I posted a question on the Melanoma International Foundation’s forum asking for experiences with interferon so I could better prepare our family for what is ahead. One of the strongest voices in that discussion was from Catherine Poole, the President/Founder of the foundation, a melanoma survivor herself and author of Melanoma Prevention, Detection and Treatment. She strongly objects to the use of interferon. Here are some excerpts from our conversation.

Catherine Poole wrote:

“MD Anderson is a good place, but if they continue to use Interferon there should be some questions asked. What do they hope to achieve, it only at most extends the time for recurrence in 8%? What will the long term affects be on this child? Will she lose fertility, have problems with depression, etc? Not only does Mayo clinic not prescribe interferon, neither does SLoan Kettering, UPENN, or Johns Hopkins, all the cream of the crop melanoma centers. The latest research confirmed that interferon did not extend longevity, and that one month was as effective as one year. There are pharmaceutical politics that play into this and this drug has lost it reputation for treatments in other disease groups. I would DEFINITELY get another opinion from a top notch melanoma center before you proceed.”

I wrote:

“It comes down to this for me... if we did not do it and it comes back, could I forgive myself? I could not. I will still question it and speak more with her doctor but ultimately, I think I will have to do it. The rest is in God's hands.”

CP:

“You can't look back on your decision once it is made. I remember the newscaster, Sam Donaldson and what he said when he made the choice to NOT get interferon. He said he's never looked back on it. The pros and cons should be weighed. The overall efficacy of the drug is very low, if it is coming back, it will come back either way, with or without interferon. The drug is only proven to extend the time for recurrence and a short amount of time. The bottom line is it does not extend survival time. I would certainly have a pediatric oncologist weigh in on it.”

Me:

“If what you are saying is true Catherine, then WHY would her oncologist say that he would give his own child this drug if she had what Rachael has? I cannot imagine he would go that far for a financial kickback. If it's so clear, then there wouldn't be a question.”

CP:

“I have no idea why the oncologist would say that. I have talked to many specialists in melanoma about your situation and they say the opposite. No one knows what interferon will do long term to a child. DIdn't your oncologist say it has only been prescribed to 100 children total? We do know the small margin of benefits this drug has and it is not a good trade off for any age. But many docs go by the book, this is an FDA approved drug for stage 3. They don't look outside the box and feel prescribing "something" is important. Watch and wait is equally good without worry of long term side affects. I can tell you for certain that the following top institutions for melanoma treatment do not prescribe interferon: MAYO Clinic, SLoan Kettering, UPENN and Johns Hopkins. I would certainly look to another institution for an opinion if I were in your shoes and make sure they were a pediatric oncologist with melanoma specialty.”

She has said that there are a couple doctors willing to do a phone consult with me. So if they back her up but her oncologist at MDACC still says it is worth going ahead with the treatment, then what? It’s up to us. And either choice could have life and death consequences. And YOU try finding information on the internet about it. I’ve looked and there is little to none.

This is what one article dated in 2009 about pediatric melanoma has to say about interferon:

“A recent prospective trial of adjuvant interferon treatment was conducted for 15 patients with stage III pediatric melanoma.65 Of these 15 patients, 9 completed the therapy and 2 recurred during therapy. Pediatric patients suffered less toxicity than adults, mainly neutropenia.

Another recent report examined the use of highdose interferon in 6 pediatric melanoma patients with metastatic disease on sentinel lymph node biopsy. Five of 6 underwent complete lymph node dissection followed by high-dose interferon treatment. Four of the 5 completed treatment and were in remission at the completion of the study with a median of 26 months follow-up, and 1 was still receiving treatment. Dose adjustments were required in a significant number of patients: 2 for myelosuppression and 2 for abnormal liver function tests.

In summary, while the impact of this treatment on recurrence and survival remains to be determined, it is feasible to offer interferon to pediatric patients.” (Bold mine)

“Feasible to offer interferon”? “Feasible”?! Are they serious? THAT is what they concluded? Not to get too terribly boring here – too late, I know – but one definition of feasible is this: “reasonable enough to be believed or accepted”. Let me be a little clearer here than this article is: I DON’T WANT “REASONABLE ENOUGH”!! THIS IS MY DAUGHTER AND I WANT ABSOLUTES!

There are no absolutes and so we are left with a very difficult decision. Many have asked how they can help. Pray for King Solomon style wisdom here. Both choices suck but we have to choose one. Rachael’s future may depend upon our decision.

SPF Blues

2009-09-18T08:21:00.001-05:00

I have an appointment today with a counselor. Just two weeks ago I was so sure that the idea of needing any kind of family counseling was so far out of the realm of possibility that I threw out all the information on different programs offered. I wasn't being rebellious or stoic or anything. I just genuinely didn't believe it would be necessary and I was trying to clear some junk out of the paper pile.

This morning was hard. Ever since Rachael was a baby she has HATED sunscreen. Sometimes it was barely worth going to the pool for the battle over the sunscreen. And now I have - HAVE to put it on her every single day. And she hates it so much and so I wake up most mornings with dread because I know she will cry and I will try to be patient but when the mantra of "NO! I'M COLD! I DON'T LOVE YOU ANYMORE!" starts I have a hard time maintaining my patience. Some mornings she surprises me and it's not too bad. This was not one of those mornings.

It exhausts me and I hate it and it makes me wonder what the counselor will think when I am presumably coming to discuss my son but will most likely need to cry about having to put sunscreen on my daughter.

Of Blueberries and Mashed Potatoes

2009-09-17T01:29:00.002-05:00

Rachael has been getting really mad at me lately. I don't know if it's because she's 5 1/2 or because she is feeling anxiety and the stress of what's going to happen or if I'm just more sensitive. Everything seems to set her off though and it's ALL MY FAULT.

Tom's parents sent the kids a care package in which they included a little vial for each of them of a precious metal. Rachael's had gold in it and Marc's had silver. So she wants to take it to kindergarten to prove to some little girl who did not believe that she was a bonafide millionaire that she really is the owner of gold. Here was our conversation before school.

"Mommy, what kind of gold is it?"

"It's just gold."

"But what KIIIND?!"

(Realizing she is looking for more and it's going to be ALL MY FAULT for not knowing, I sweetly respond) "It's just gold sweetheart. Real gold."

She completely loses it. "YOU DON'T UNDERSTAND AND YOU ARE NOT LISTENING TO ME!! I SAAAAIIIIIDDDD WHAT KIIIIIIIIIND OF GOLD IS IT?!?!"

Uh. "I don't know what you want me to say. It is REAL gold. There aren't different kinds of gold. It's just real."

"IT WAS ON THE PAPER!! YOU KNOW IT AND YOU ARE JUST NOT TELLING ME!"

Light bulb goes off in my brain. "Do you mean GENUINE gold?"

"YEEEESSSSS!!!"

"Rachael, do you know what genuine means?"

"No."

"Real."

"AHHHHHHHHHH!!!!!!!!!"

I'm so glad she doesn't drive yet. Can you imagine the road rage? "I KNOW the light turned green but I WAS WAITING FOR A DIFFERENT SHADE OF GREEN YOU IDIOT NOW STOP HONKING YOUR HORN AT ME!!"

Ahhh. Typing in all caps can feel really good sometimes.

So tonight she was mad because I found every stuffed animal she owns except for the tiny little puppy she got three years ago in a Happy Meal and left in ~~the vortex of slovenly shame~~ my van and I JUST DON'T UNDERSTAND how much she needs it and so she's going ignore me and then she screams like an abandoned piglet (think loud and annoying) when I finally walk away. So I go out and breathe deep and then go back in and sit next to her. We had a lovely touching conversation that ended in giggles and will hopefully help. Bottom line, when she (or I) needs a reminder to speak kindly we will use the code words "blueberries" or "mashed potatoes". We like "blueberry words". They make us happy and are tasty in our ears. But "mashed potato words" are yucky and we never want to hear them again. It will be a reminder and not a rebuke and hopefully will restore our friendship. And will do nothing for getting her to eat her mashed potatoes.

Won't you say you love me too?

2009-09-15T20:29:00.002-05:00

Tom and I are going out on a date tonight because we have a huge reason to celebrate. He is starting his new job tomorrow! I don't even want to begin to recount all that has brought us to this point since he retired from the Army but let's just say the timing couldn't be more perfect. We should be jumping up and down in little circles doing the Snoopy dance and then putting the kids to bed early *wink wink* but it's hard right now to feel celebratory. Having said that, we are going on a date and I'm determined to have fun.

Last night I could not sleep. I don't think I slept an hour but I have a strange amount of energy. I did housework today which actually felt really good. I was thinking while laying there awake that the hardest question to answer right now is "How are you?" It's tied with "How's Rachael?" I've not been doing the "I'm fine" answer because that seems so ridiculous but it's becoming exhausting trying to actually figure out how I am doing. I really have no idea how I'm doing but for right now, right this moment, I'm doing fine. So, if I say I'm good, or I'm fine it's because I'm really working hard at being that way. I'm not lying or being fake. I just don't know any other way to answer because I truly don't know.

I am very much looking forward to getting to a point where we are simply continuing our lives. It's going to be different now but we'll eventually find our equilibrium again.

Actually, I think Rachael really is doing fine. If you consider playing "how obnoxious of a fart noise can I make?" with her brother from sun-up until sun-down to be fine. Personally I find it a bit demented but when you have a Daddy who still thinks "pull my finger" is hilarious I guess it's to be expected. She is aware of what's going on but she feels good and I think it's hard for her to viusalize the future. She can sit next to me on that bench. I think she would be perfectly happy to play ostrich and keep her head in the sand. That makes it hard for me to know how much to prepare her. I think I should just let her be silly and normal for now.

Besides, singing the Barney theme song at the top of our lungs while walking home from her first Daisy meeting is way more fun and better therapy than any amount of talking about our fears for the future.

"I love you."

"I love you more."

"I love you most!"

"I love you MORE than most!"

We'll serve it with refried beans and stewed tomatoes.

2009-09-15T00:13:00.005-05:00

I need to journal. It’s therapeutic and I like that I have this feeling of doing something that will help me in the future… journaling for posterity if you will. But my mind is so muddled and so many of my thoughts are incredibly ugly. Do I really want to record all that? I’m holding back a lot and I think that’s a good thing because I don’t want my children to look back at this one day and hate me for some of my thoughts, especially because I don’t know how temporary many of my feelings are right now.

I have a few appointments coming up that I made today. I have an appointment for counseling for myself because I’m concerned about Marc. I wanted to make the appointment for him but they said it has to be me first. That’s probably for the best. The center I’m going to also gave me the name of a child psychologist and they recommend I go ahead and get a diagnosis for Marc. I made that appointment as well. I believe Marc has a mild form of Asperger’s but we’ve never had him diagnosed because we’ve dealt with it through diet for the past 5 years and he’s done very well with that. We’ve never had him medicated as we just didn’t feel it was necessary but now I’m questioning if it might help us get through this time. Not that he has changed but I am feeling this incredible lack of patience with him and maybe a little extra help for right now would be okay. I don’t know. It’s like a freaking impossible decision and Tom and I are not on the same page so right now so we’ll just go one step at a time and I’ll go to this counseling and we’ll try to get him diagnosed.

Pray for my son. Pray that I can love him the way he needs to be loved because that is really hard for me right now. A good friend of mine said something to me that I have been repeating to myself and others for two days now. She said, “Danielle, you should feel sorry for him because he cannot feel something that he should be feeling.” That’s why I think we need help. He cannot feel things that he SHOULD feel. And it makes me feel other things than compassion right now. So yeah, we need some help.

If anyone local feels led to pour into him a little, I will take you up on any offer you suggest.

I spoke with another mom tonight with a little girl who has stage 3b melanoma. Her daughter is 6 months past interferon and we talked for about two hours. That was so good for me and I am incredibly grateful to her and her willingness to open up and share with me. I could hear her family in the background the whole time and she just stayed with me. It was a sacrifice for her and words aren’t enough to express my gratitude. I don’t like the unknown but I also don’t want to be unnecessarily scared witless so though google is bad, talking to someone who can give me the lowdown on the ugly truth of this disease is very good.

I don’t know why but this stuck out to me. People who have melanoma can never be blood donors. What a minor thing but it’s just like a mini kick in the pants. I keep wanting to go back to “this is no big deal, we’re just being preventative. Careful, if you will”, but no… this is cancer. Cancer. I keep thinking that she has like, the pretend cancer. The almost cancer. The not really cancer. The no big deal cancer. The past few days the truth that she has the capital C Cancer has been sinking in and the more it does that the more muddled my brain gets.

I keep clinging to the “you will have grandchildren through her” speech but I’m in this limbo stage of “Okay then, IS IT a big deal or IS IT NOT?” Would ignorant bliss be a better state to stay in where I can laugh and joke and not be scared or do I need to be hit with a healthy dose of realism and deal with it so I can move on?

Her oncologist is pretty much the most cheerful guy I’ve ever met. Is he cheerful with everyone or is he cheerful because finally he has a cancer patient he can feel confident about? I told Tom tonight that I think I would do better with a doctor with horrible bedside manner who was telling me my daughter would grow old because I would trust it more. I think because the way we came into this was so lackadaisical, I’m having a hard time now trusting the “good news” that she will be “just fine”.

If she’s going to be “just fine” then why are we putting her on a medicine that will make her sick for a year? If she's going to be "just fine" then why does she have a three inch scar that she called "evil" tonight? If she’s going to be “just fine” then why are we at MD Freaking Anderson? Or is it BECAUSE of the interferon and the surgeries and MD Anderson that she will be “just fine”? Or are people just trying not to overwhelm me and keep me in high spirits that they won’t tell me the truth that we HOPE she will be “just fine” but really, it’s possible she won’t?

I think I am going to request to see another doctor. If two doctors tell me she will be “just fine” then maybe I can concentrate enough again to actually buy groceries that make sense together. I joked on facebook today that we were going to have Peanut Butter Bisquick Pasta for dinner. With the hodgepodge of groceries I brought home though I’m not sure how far from the truth that is.

Are worry and being scared the same thing? I don’t want to worry but I am scared.

Bippity Boppity Boo

2009-09-13T22:22:00.001-05:00

Last week, if you consider today the end of this week, the kids and I were in Disney. It honestly seems like a lifetime ago and I'm so glad we went. My friend asked me what the best part was and it was hard to pin down one best part but seeing the kids’ reactions to the big iconic structures at Disney was so fun. The first time we walked around the corner of Main Street, USA and there was Cinderella's Castle they were awestruck.

That night when we watched the fireworks show Marc in particular was really blown away. At the end he said, “That was so beautiful!” He’s not one to effuse so it was high praise.

There were so many wonderful little moments. The first actual ride we went on was “It’s a Small World” and Marc blurts, “This is SO CREATIVE!” Finding out exactly how much I can sleep deprive and starve my children and still manage to have an absolute blast as soon as we get to the front of the line and we’re all smiling from ear to ear knowing it’s almost our turn for something really special.

Not being sure if going on the “orange side” of Mission: Space is a good idea when they tell us 15 times that we might get sick and then screaming in utter terror and joy as it takes off (and not getting sick but sure we don’t want to do it again!). Being so hungry and hot and cranky and finally getting seated in the Tusker House at Animal Kingdom and sharing that amazing meal together for TWO HOURS. Two hours eating. With two small kids at Disney. It was so wonderful that I took about 15 “beauty shots” of the food just to make Tom jealous. People there were worried for my marriage - it was that good and therefore that mean.

We went to a BBQ and Rachael danced the night away with Goofy. He was twirling her and doing air guitar with her and she had so stinking much fun. Marc found a friend in a little boy from England and they spent the evening sharing fart jokes. Pure, smelly, heaven.

It was beyond fun.

Focusing on them and eating all our meals together and suffering through long bus rides and ridiculously long hikes in the rain so we could eat and hearing their laughter as they experienced all of it and just being with them. It was probably the best week I have ever spent with my children. And it was totally worth the embarrassment of actually resorting to wearing socks with my crocs because the blisters were so bad

I can’t wait to go back.

Big girls DO cry.

2009-09-13T00:09:00.004-05:00

We first found out that Rachael's little mole might be a bigger deal than we were initially told through a phone call from her local doctor, Dr. D. He called us at home in the evening and asked if Tom could get on the other line. Dr. D said that the tissue had been sent to Baylor and they were forwarding it to Mayo and that we should start to prepare for further treatment. We were concerned of course, but he was very reassuring and told us that this was most likely just extra vigilance and not something to actually be worried about. So, I didn’t worry.

He recommended at that time that we go to Houston because they have the absolute best cancer center in the world but he warned us that it could be very scary to walk into a place like Texas Children’s Hospital or MD Anderson. Honestly, I remember thinking, “It’s a hospital. There will be sick people. I think I would be prepared for that.” But the reality of walking into MD Anderson for the first time was very different than any other hospital I’d ever been to. There weren’t just people with hangnails or broken legs. There were people with no hair and sunken cheekbones and bruises all over their bodies. There were children who didn’t have the energy or internal body heat to withstand getting out of their layers of blankets to play in the state of the art playroom. There was a little girl Rachael’s age who was puffy with who knows what medicine and a little bit of fuzz on her head and eyes that couldn’t quite focus.

And then there was my beautiful, healthy looking daughter with a full head of long curly hair who was skipping around with joy at all the wonderful toys and I just thought, “We don’t belong here.” Not only did I feel like we didn’t belong but I felt incredibly guilty that she was being treated with the same concern and compassion and I was being met with the same absolute love and sympathy as all those other moms who clearly had babies in much more dire situations.

Going to MD Anderson is truly like entering a family who loves you and wants to show their love for you in every way. I felt embraced. After her first visit, one of the Child Life Specialists was chatting with Rachael while I was waiting on a piece of paperwork and not knowing who that woman was talking to my daughter I asked the receptionist. She said, “Oh, she just talks to the kids about their day and what they’ve been through and sees if they need to talk.” I wanted to run over there and say, “Please! Go talk to someone who needs you! We’re okay! We don’t deserve all this compassion!”

It’s not like Rachael or I don’t deserve compassion. Everyone does. But I’d been told that my child’s prognosis was most likely fantastic and after a little surgery we’d probably just need some follow-ups. It was just a weird feeling. Like I needed to apologize for taking up their precious time when clearly my daughter wasn’t like those other kids.

And even now that her diagnosis is worse than we thought it would be and her treatment will be longer term we still believe that she will grow old and – though this is a little thing in the grand scheme, for her it is the biggest thing – she will never lose her hair. So I can still look around at all these other kids and feel like I shouldn’t be anything but grateful. And I AM grateful. I am so very grateful that we found it early and that we have amazing treatment options and that my child will likely survive.

But today… just for a little bit… I want to say that this sucks. This is really hard. I don’t want her to have more surgery and more scars and tubes and needle sticks and recovery and risk of chronic swelling and pain and medicine that will probably make her sick for a year and the extra expenses and this feeling of having absolutely ZERO patience for my son’s lack of compassion and my husband’s normal communication mode of not talking much and not knowing for sure that she won’t end up with tumors in her lungs and bones and brain.

We are so very grateful that it’s not worse and all the things above are things we can live with and so very many people would give their very own lives to only have what we have in front of us but just for today I cried and I cried a lot because it just sucks.

Spitzoids are not those things you shot out of a straw in the 3rd grade.

2009-09-12T00:28:00.006-05:00

I've blogged before but wasn't very good at it. I think I had one follower and she gave up on me after I didn't update for a year. So honestly, I can't promise I'll be any better at this blog but I think a lot of people would like information and I'm hearing that hundreds of people are praying for us and it's overwhelming in a really incredible and humbling way.

On July 14th I took Rachael to see her doctor because she had a little mole on her left arm that looked odd to me. Not knowing anything about moles I didn't think much of it, especially because Tom has about a billion of them and I just thought, "poor girl has her daddy's skin". It had been there maybe 2 months but one night she said, "It kinda hurts," and that seemed really strange. So we're there in her doctor's office and I'm all ready to hear, "Mom. It's a mole. Deal with it." Instead I hear..... crickets. Then.... "hmmmm." Then he gets out his super special goggles with magnifying glasses and lights and straps it on his head and goes, "No, I don't like this at all. This is coming off today."

And that's just what he did. He took it off. In his office with a bit of numbing juice and a scalpel. I watched the whole thing. And I didn't pass out! Rachael whimpered during the shot and then was completely stoic. She is so brave. I asked her doctor if he was worried and he said, "No. I have already prayed over her. I will pray again when I get home and I am not worried." That was good enough for me so I wasn't worried either.

This "no big deal" ended up being a little tumor that caused quite a stir for its rare-ness. Baylor, Mayo and MD Anderson all had a go at discussing it and though they didn't agree on exactly what it is, they agreed more treatment was necessary. The term they initially used to describe it which, if you were to google it would probably confuse you - or maybe it's just my brain that cannot seem to compute the thing - is "spitzoid". Here's one of the most concise answers I've found for what exactly a "spitzoid" is. From the article:

"Spitz melanomas are completely benign (non cancerous). If left alone they will cause no harm but because they are difficult to tell from malignant (cancerous) melanomas they are often removed for examination under the microscope, to confirm the diagnosis. Once removed the problem is completely cured and will not come back.

Very rarely a cancerous (malignant) melanoma can look like a Spitz melanoma. When this happens the tumour is sometimes called a Spitzoid melanoma. Spitzoid melanomas behave like other malignant melanomas."

It was pretty easy to cling to "completely benign" and "very rarely". Actually it was terms like that that made the treatment all three medical establishments were recommending seem quite invasive. They wanted to do a "wide local excision" and a "biopsy of the sentinel lymph node". What this means is that they wanted to cut a large chunk out of her arm where her local doctor removed the original tumor to make sure there were no more cells hanging around looking to start trouble and they wanted to take one or two of her lymph nodes out so they could cut it up and make sure the cells hadn't travelled. Which would make it malignant. The "very rare" thing. And that would be bad.

They did the surgery and I was really shocked out of all denial when I saw her wound. It's hard to see perspective here but it's a little over 3 inches long.

Plus she has a small scar under her armpit where they removed 3 lymph nodes. But as ugly and shocking as that was, I wasn't worried. I mean, I was concerned but I was not spending a lot of time fretting. And after they did the surgery I didn't hear back from the doctor like I thought I would the following week so started believing it was fine. We went to a long planned trip to Disney World (I'll post about that at some point) and other than being VERY diligent with sunscreen and hats and shade-seeking, we put it out of our minds.

Yesterday we had an appointment scheduled for stitches removal. I was very confident that they were going to give us the "all clear" and we'd schedule a follow-up. When the doctor came in he was all smiles and I said, "So, do we have news?" and he said, "As a matter of fact we do." Still all smiles so I'm thinking, "Phew! I knew it was fine." Then he turns to Rachael and says, "Rachael, mommy and the doctor have to do some really boring talking. Would you like to go to the playroom where it will be more fun?"

He was being cheerful and upbeat for her. Mind started reeling.

We take her to the playroom, he puts his arm around my shoulder and says, "I can count on one hand the amount of times I have sent a child out so I could talk to the parent alone." I said, "This isn't good news." And he said, "No. It isn't."

I was alone and I didn't want to break down. And the not breaking down was making me really naseous. And then my brain sorta went numb and I went into "get information" mode.

Rachael has "at least" stage 3 melanoma. They found cells in the lymph nodes. So that sounds really horrible and if one were to spend a lot of time googling, one might end up in a puddle quivering under her computer table but one has studiously avoided google so one will simply tell what the doctors said. Which is much more encouraging than I understand google is. Google does not give hugs and say, "You will be okay". Google is like that mean woman at work who actually tells you that you do look fat because you were stupid enough to ask. The best way to deal with her is avoid her and certainly don't ask her questions you don't want to hear the answers to.

Her oncologist believes she will grow old and give me grandbabies. He actually said that. For reasons that doctors and researchers do not know, when children are under 10 years old and they are diagnosed with the ultra-scary "malignant melanoma", their little bodies seem to fight and beat it. If she were over 10 and they found melanoma in her lymphatic system their enthusiasm would be a bit more cautious but the children they have studied and followed who got this around the same age as Rachael are all still alive. She is in a VERY tiny group. Well under 100 children but they have all gone through the treatment that they are recommending for Rachael and they are all still here. So that news allows me to breathe and continue to function and even laugh. The other good news is that none of the treatment involves chemo so she will not lose her hair. That makes me almost cry with gratefulness.

What is to come is another surgery when they will remove all the lymph nodes under her left arm. This will happen on September 24th. We will head back to MD Anderson on the 23rd for pre-surgery appointments and she will have an overnight stay after the surgery. Her surgeon has warned me that pain management will be tougher this time. She will also have a tube inserted for drainage and on her other arm she will have a picc line inserted at that time. There are a few possible complications and the one I am most concerned about is that her body will not adjust the flow of drainage to go to other lymph nodes properly and that will result in chronic, painful edema. I plan to be on my knees frequently asking God to work in her body so she doesn't have to endure that. The surgeon says it can be lifelong. The chance is small but friends, we have already learned the "very rarely" does not mean "won't happen".

After she has healed completely from the surgery we will begin interferon. In an attempt to find a good link for interferon and learn more about it myself I ended up googling. This was not a good idea.

I love her so much. She is so beautiful and full of energy and life and potential. I long to see what kind of person she will become and cannot imagine having it cut short. I know God gives us strength but it comes from a place I don't possess yet. For me, that strength is unimaginable.

Deep breath.

Okay... so what the doctor told me is that the first four weeks the interferon will be given through an iv using the picc line on a daily basis and will likely make her quite sick. After that she will have weekly injections that we can do at home (again through the picc line) and those will last 48 weeks. The next few years will involve lots of tests and pricks and scans and trips to Houston.

She's so innocent and little. And she has an unbelievable joy of life. She is so brave and she has utter trust and complete love for Jesus. Right now she is struggling though with the question of why God didn't answer her prayers in the way she wanted. We talk about it and I explain the best I can but it's so hard. I tell her it's okay to ask Him. I sure do. Ultimately though, I know He has a plan for her and that's what I tell her. That she's special. And that no matter what He loves her. And that despite anything hard we go through, this truth remains... God is good.

But she's going to be sick I'm afraid. And she's going to hurt. And my heart is breaking.