Saturday, September 18, 2010

Goodbye

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.)

Friday, September 17, 2010

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

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.

Monday, September 13, 2010

How I Became A School Teacher: Part 1

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!

Saturday, September 11, 2010

Rachael and her peeps.

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!

Wednesday, September 8, 2010

Hump Day

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!

Saturday, September 4, 2010

Scattered Reflections

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?

Friday, September 3, 2010

A story about my husband.

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".

Thursday, September 2, 2010

We have winners!

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

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.

Tuesday, August 31, 2010

His new baby might be a little young for her.

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.

Monday, August 30, 2010

Shade Sucks. Give Me Fun in the Sun!

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.

Friday, August 27, 2010

The Next Step

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.

Thursday, August 26, 2010

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

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

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.

Thursday, July 22, 2010

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

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.

Monday, June 21, 2010

Normal

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.

Saturday, May 1, 2010

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

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.

Wednesday, April 28, 2010

Mish Mash

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.

Wednesday, March 24, 2010

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

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.

Monday, March 15, 2010

Flashback

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.

Monday, March 8, 2010

Growing up is hard.

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.

Monday, March 1, 2010

I wish I may, I wish I might.

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!"

Saturday, February 27, 2010

SNAFU

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.