Monday, September 19, 2011

no love for dragons

This was so awesome I just had to share it!  A few nights ago Carter was drawing with his new stencil.  He drew a heart for Mommy, Daddy, his brother, sister, and himself.  He told us that he drew them for us because he loves us.  Then he drew another one, drew a circle around it and then drew a line threw it (like a "no parking") sign.  He said, "This one is for my dragon.  I drew a circle with a line through it because I don't love him at all."  (you can see it in the lower left hand corner, kinda between the two blue hearts)  Then he drew a check-mark (just to the left of the green heart, close to the middle - looks like a backwards 'C') and told us, "There!  That's a check-mark to say I don't have a dragon anymore!"  At the end of the movie "Paul and the Dragon" the doctor erases the red circle around the cancer and puts a green check-mark instead.  What a smart and funny boy!

Friday, September 9, 2011

Maintenance to the Max

We went in yesterday to check Carter's counts.  His bone marrow has been working very hard this past week to recover.  And recover it did!  White blood cell count of 9500 and ANC 7400!!  Hemoglobin 10.1 and platelets 276,000.  The steroids he was on last week probably helped with this huge jump.  But no matter, this means that maintenance is 100% on.  He started his other two oral meds last night and will continue on those for a really long time.  SO here we are!  Aahhhhhh maintenance, you taste so sweet :)

Can you see his hair growing back?!?!

Just a few short weeks ago we were wondering how long it would take for him to be back to "normal".  As in, doing things for himself again like getting dressed, getting himself a drink of water, getting himself in and out of the car... things that he used to do but hasn't for a really long time now.  And other simple things such as playing with his brother or friends, have enough energy to stay off of the couch for more than 20 minutes at a time, walk from one room to another without asking to be carried, and just be happy and act like he's feeling good.  These last couple days he has been doing so AWESOME!  I guess I kinda forgot how emotionally and physically taxing it is caring for a sick little boy because it had become my normal.  But these last couple days, we have been overjoyed with how happy and energetic and fun he is again.  Throughout this journey we've had glimmers of happy healthy Carter shining through but didn't want to get too excited, knowing it would fade with the next dose of medicine.  Now, there's no foreseeable end in sight of feeling good and it feels amazing.  He feels it, too.  Yesterday, his brother drank his whole glass of milk way too fast and then threw up.  We were talking about it later and Carter said, "I don't throw up anymore!" like it had just occurred to him how good he feels now.  Him and his brother talk about how he smashed his dragon all the time.  Jude might be more excited than all of us - he has a friend and playmate back for good!  Two days ago was just a really great day.  He came out in the family room from the hall and announced that he had cleaned my room.  I had sorted the laundry on my bedroom floor so there were piles of clothes everywhere and he'd picked it all up and put it on my bed.  I honestly don't remember the last time he helped without being asked first.  He used to do stuff like that all the time - little kids love to "help".  At the end of the day, he got hurt and started crying a little bit and I noticed that he hadn't cried all day long until then.  I hadn't realized how much crying I'd become used to.  It's great to hear laughing all day long instead.  We're all just enjoying the moments around here.  I could get used to this.

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!