Tuesday, October 11, 2011

Skyler had his monthly clinic appointment today.  I cannot believe its already been a month and he actually went that long without having to go in.  I have been looking forward to this appointment for a couple weeks now, even though I hate going to clinic it just felt too weird that we had so long between visits.  Even though I give him oral chemo everyday there is something comforting about him getting chemo through his line.  It feels like we are keeping those bad guys away better.  It seems strange, but he has been acting and looking so normal lately that it worried me a little.  Im so used to always being in survival mode and having so much going on with him that its just so weird to just sit back and watch him be able to be a kid again.  He looks SO GOOD!  He has gained weight and actually looks healthy.

When we got Skylers counts today his ANC was way too high.  They want to keep it anywhere between 800 and 1300 but his was 5500 so they upped the dose of both of his oral chemos.  Im hoping his counts will drop soon, not too low but low enough to know that the drugs are actually working.  Everything else went great.  The doc said he looked so good and I didnt have too much to talk to him about because he isnt having fevers anymore and he is acting great.  He did have to go down to RTU for another lumbar puncture for chemo in his spine today though.  They didnt have his Vincristine ready for us before we went down this time so we had to come back up to clinic for chemo afterwards, but we were still out of there in four hours.  On our way up to clinic when we first got there I ran into one of the resident docs that took care of Skyler in the PICU and she could not believe it was the same kid.  She told me that he was truly a miracle.   

When we first get to clinic Skyler always gets weighed first thing.  His weight went up from 16.4 kilos to 18.4. Awesome!  I remember when I had to hold him to get weighed because he wasnt strong enough to stand on his own.  This picture makes me smile because he has come along way.

  They also have to see how tall he is.  The dosage of his meds depend on his height and weight.

         He has done this so much that its no big deal to him now.

Im the one that usually draws his labs because I like it done a certain way so its just easier.

Not sure whats up with the face, silly boy but I threw this one in there because I normally dont even see his scar anymore where they took out his spleen because Im so used to it.  When I saw this picture I was kinda shocked at how big it actually is.  He sure has a lot of battle wounds, good thing he's a boy.

This is down in RTU waiting to go back.  They got out some robots for him to play with to keep him busy.  He was getting really antsy waiting around because he was so hungry.

After he falls asleep in my arms I leave and wait in the hall.  I usually here him start crying back there for mommy before they come get me, but today he took longer to wake up.  When they took me back there he was still sleeping so they had me wake him up.  Right when he woke up he wanted the usual crackers, cheetos and root beer slushy.  He told me today that he likes the sleepy medicine now because he likes feeling dizzy before he falls asleep.  Oh boy Im in trouble.

Finally we went back up for vinc.  This is just a quick push so it doesnt take long at all.  Next month he doesnt have to get a back poke so it should be even quicker.  He is so happy about that.  He is not a fan of the hurry up and wait game.

Other blogs I read usually put their kids stats on here every clinic visit.  I never did because he got labs drawn so often that it was just a pain, but I'll start that now so I can keep track for myself too.

ANC:  5.5
Normal 1.5 to 8.5

Normal 150 to 400

HCT: 30.5
Normal 34.0 to 40.0 (30.5 is still really good for a cancer kid)

WBC 8.9
Normal 5.5 to 15.5


Kristi said...

I have been following you and skyler for several monnthes now. It is fabulous to here the fevers are finally gone and you have been so normal lately.

Robert Smith

Jenny MacDonald said...

I used to take care of a child who received chemo for ALL (He's 22 now...). Anyway, he was part of a study investigating which was more effective, IV chemo or Oral chemo. He was selected to be in the oral chemo group which was a little disappointing because we all felt that IV would be more effective. Turns out we were wrong. The study revealed that the oral chemo worked better. Just a little FYI.


lea said...

Have I told you lately how much I love reading your updates?? I do! I am SO HAPPY to see him doing so well, and I hope you are feeling well too!

I absolutely LOVED that video of him talking about the $400 for games. You can really see how sweet, and humble, and grateful he is! What a cutie...he has definitely earned his wish!! Make A Wish is AMAZING!!

Brandi said...

I'm so happy for you both.

susi and adam said...

that is fantastic! So happy to hear he is doing well and that the fevers have stopped!!! Absolutely wonderful news for you and Skyler :)

Erin said...

Wow, Skyler looks great! His cheeks have filled out a little and he looks so healthy.

I've been wondering about the fevers. Such wonderful news that they're gone now.

His hat is very cool! Nolan would freak out over it.


Briana said...

so many happy things! i'm glad to hear that he is doing so well! it's got to be hard to drop your guard after going through, so much, but i hope you guys are getting a nice "break". haha. skyler truly is amazing! it makes me so happy to see him so strong and growing and doing well. hooray!

Ana Rodriguez said...

I can't believe you draw his labs for him!!! You are a Super Mom!!!! So happy to see he's feeling better, awesome counts!!