Saturday, December 26, 2009


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!

Thursday, December 17, 2009

Sweet Return

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.

Tuesday, December 15, 2009

I still do.

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.

Thursday, December 10, 2009

It's a good thing.

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!

Wednesday, December 9, 2009

The Good, The Bad and The Pretty!

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?

Friday, December 4, 2009

I'm okay. You're okay.

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.