Monday, September 5, 2011

Party and Maintenance

 We (mostly) started Maintenance on Thursday!  More about that later, for now.... the PARTY!  First, he saw the cakes and asked for some candles in it.  Then he told me "we can't do candles without a song" and so we sang Happy Birthday to him.  Haha, silly boy.  Then we headed outside among friends (some of which came all the way from Utah!) where Carter saw these on the ground waiting to be stomped on:

 He's been waiting 8 months to do this!!!!
(Smashing his dragon is symbolic of killing the cancer.)

(My face was covered in tears by this point.)

 A beautiful sight!

 Then he took a break to play his new game while everyone else had some yummy dinner.

After that, we brought out this guy:

Carter slaying his dragon:

It was an amazing night.  Thank you again to all of you that were here (physically and in spirit :) ) and brought food and celebrated with us.  We've been waiting for the day we could have this party and it feels good to be here.  It's been 8 months since Carter was diagnosed with Leukemia and it doesn't seem that much more real now than it did then.  He's been admitted to the hospital 9 times, has made 6 ER visits, has had 15 sedations, and about 10 blood/platelet transfusions.  It's very apparent to us how much Carter has grown and matured throughout all this.  It's the most obvious to me when he gets his port accessed.  He is SO brave.  He doesn't cry or even say "ow" anymore.  It might seem like a little thing to some of you but this is HUGE to us.  I am utterly amazed ever time.  Two clinic visits ago, we were driving up to the hospital and Carter said, "when the nurse does my poke I'm going to say 'Yeeeooowww!', it will be so funny!"  I thought for sure he would forget or be too focused on being brave but sure enough, he said it right when she put the needle in.  He immediately started laughing because it scared the nurse.  It was SO AWESOME!  I never thought he would get to this point with being accessed.  We are all just so happy to be past all that junk and only have smaller junk in front of us.  I just hope and pray that Maintenance will be highly uneventful.

So here's a couple videos also.  The first one is some pinata action. The second one is Carter stomping a few dragons.  Sorry most of it is sideways - if there's a way to fix it, I don't know about it. 



Now to maintenance.  On Thursday Carter's ANC still wasn't up to 750.  It was only 676.  His doctor decided to go ahead with the Intrathecal Methotrexate (the one he has to be sedated for - it goes in his spinal fluid) and the Vincristine (IV) since neither of them lower his counts very much.  The two oral meds that he'll take at home haven't started yet since they do lower his counts.  We'll go back in Thurdsay to see if his counts are good enough to start those other two.  We did, however, get to start the steroids, or "yucky medicine".  Do you all remember the yucky medicine??
Solution!  Cut em up and stick em in a gel cap!  Best thing that's ever happened to us.  

So here's how Maintenance works.  It's 3 month long cycles that just repeat until we're finished.  At the beginning of each month, Carter goes into the clinic for IV Vincristine and sometimes Intrathecal Methotrexate in his spinal fluid.  At home, he takes Mercaptopurine every single day until April 13, 2014.  Also, Prednisone (steroid) 5 days every month, and oral Methotrexate once a week except the weeks he has the Intrathecal.  And that's it.  Sounds pretty easy, right?  I sure hope so, cause here we go!

Oh, and Carter starts preschool tomorrow!!!  I, of course, have mixed emotions about it, but I'm mostly just so excited for him because I know he will love it.  

Here's to "normal" life!


  1. CONGRATULATIONS!!! I'm so happy for you guys! Carter is amazing and by far the bravest kid I've ever met. I'm proud to know him. We love you, Carter!!!!

  2. Thanks for the pictures from the party. Dad and I watched the videos this morning and my face was covered with tears too. It has been a long, difficult road for your whole family, we are so very proud of you all. I am so glad the yucky medicine has been contained. We love you all SO much!

  3. Yay!! Looks like a awesome party and we are SO proud of Brave Carter and his amazing family. You guys are so awesome and such a great example. Love you guys! :)