Monday, September 12, 2011

Today was Skyler's very first maintenance appointment.  We were there bright and early and were able to talk to our oncologist about what will happen in maintenance.  There will be three month cycles and everytime he goes in he will receive Vincristine in his line, and he will also get an LP the first two months but not on the third month.  Since he is high risk he gets LP's more than a standard or low risk ALL patient.  He will also be getting the chemo 6-MP at home every night and Methotrexate once a week except for the week he will be getting it in his spine.  I thought today was going to be a longer day because with an LP it usually is, but we were in and out within three hours!  This is by far the shortest clinic visit we have had yet.  The best part was scheduling our next appointment for a month out.  It was so weird, but I can definitely get used to this.  With Skyler being Skyler though Im sure we will be in there more often but its nice to know that if everything goes right we dont have to be.  I pray with everything in me that maintenance for Skyler will go how it is supposed to and he will be able to get some normalcy in his life.  These past couple of weeks off chemo he has been the HAPPIEST kid in the world.  He wakes up smiling and laughing and happy and goes to bed a smiling happy kid.  He has also gotten his appetite back (I think because food actually tastes normal again without all that harsh poison messing up his tastebuds) and his weight went from 16.1 kilos to 17.1 today.  It has been so wonderful and you can just tell he feels so good both physically and emotionally.  I really want him to keep feeling this way, I want him to be happy and feel good, not just for a few weeks I want him to feel good from now on. 

Here is one of the docs feeling his liver and making sure everything looks good.  Skyler's belly is still bigger than normal which has been worrying me but his liver doesnt feel too big so they are just going to watch it.  Look at all that hair!  It has grown so fast.  Even though its fun to see him with hair agian I do miss his soft little bald head.  Its crazy how you become so attached to something that once seemed so weird and not right for a little child.

Here he is getting his Vincristine.  Its just a push so its so much faster than having it run on a pump.  Ive had very mixed feelings about him starting chemo again today.  On one hand I get very nervous with him being off chemo because I want those "good guys" in there to make sure they are keeping the "bad guys" away, but on the other hand he has felt SO GOOD not having it flowing through his veins and I know as Im watching it go in that this stuff is going to make my boy feel sick again.  I very much have a love hate relationship with this stuff.  Its also not fun seeing the nurse have to lay a pad over Skyler and drape himself with a gown and heavy duty gloves in case anything spills on him, but at the same time pushing it directly into Skylers heart.  Even though I know this stuff is going to help keep my son alive it still gives me a sick feeling.

This is Sky just waking up from his LP.  He really wanted cheetos and six saltine crackers.  He was so hungry this morning so right when he woke up thats the first thing he asked for.  He did really well today with his sleeping medicine and Im so proud of him.  Im very proud of him for making it this far!  Love you Skyler!


Erin said...

I hope maintenance is the "break" you guys have been waiting for and so deserving of. I missed Nolan's bald head too, but Skyler looks great with hair! He's go so much of it already!

Beth.. One Blessed Nana said...

continuing to pray for you crystal! i am just so thankful to our sweet Lord for how far Skyler has come and i pray that this maintenance phase will go smoothly!

Brandi said...

Skyler is such a brave little fighter and such an inspiration!

susi and adam said...

Hope you are having a great week. Thanks for sharing. So glad that things went well. :) yay for Cheetos. they are a favorite around here too.