Friday, December 24, 2010

Yesterday morning was a little scary for me, but that night turned out amazing so I didnt want to take away from that but here it goes.  Skyler's bilirubin has been slowly going down everyday, it had gotten up to 16 (a normal number would be .5)  it had been going down though and the other day it was five.  Skyler woke up yesterday morning looking really yellow though, so they checked his bili and it had shot up to 12.  Thats such a big jump!  Normally it just creeps up and then creeps back down, but yesterday it shot up high and fast.  Needless to say everyone was worried so they took him down to do an ultrasound of his liver.  They were looking for some kind of blockage in the liver that would explain this.  They didnt find any blockage but they did see alot more of the little white spots.  They saw them last month too, but this time they saw ALOT more.  Not good.  They thought it could either be the Leukemia coming back or his fungus becoming more active.  Definitely not the news I was looking for.  I just couldnt believe this was happening, I dont know how I could handle another big setback and a trip back down to the PICU.  And worst of all, could his little body handle another big setback?  I was pretty much a nervous wreck waiting for the Oncologist to come talk to me about our options.  She told me that if it was the Leukemia in the liver then it must be a pretty resistant kind to the chemo and they would have to give him a stronger chemo which would just slam his body again.  And if it was the fungus then they would have to start him back on the antifungal medicine that is horrible for his liver.  This is the medicine that they think caused his liver disfunction in the first place.  Both of those options were such bad news!  I felt sick.  Toward the end of our conversation I kinda checked out mentally.  The room started spinning a litte and I felt like I might throw up right there.  She told me two tests needed to be done to see what we were dealing with, a bone marrow aspirate to check for cancer cells, and a CT scan to check for the fungus.  They didnt want to do the CT right away if they didnt have to because his kidneys are finally starting to work again and the contrast that they would have to use damages the kidneys, so they scheduled him for the bone marrow aspirate this morning to check for the cancer first. 

I woke up this morning really nervous, but to my great surprise his bili had gone down to 6 and he looked much better!  He eyes were alot less yellow.  We were all kinda shocked but in a good way.  They decided to hold off on the tests and see what his body does.  They still have no clue what made him jump up and down like that, but then again it seems like they have no clue why his body does alot of things.  Most of the things that have happened to him are just not normal for the type of cancer he has.  The rest of the day today he did pretty good.  He opened presents and played with a therapy dog.  He was smiling and laughing and took some really good naps.  A huge weight was lifted off my shoulders this morning.  His little body just continues to surprise us everyday.  Tomorrow morning we will check another bili and see what it is at.  Hopefully it has gone down some more instead of going up again.  So a few extra prayers tonight would be much appreciated. 

Here are some pictures from our good day.  Alot better than having to have a huge needle jabbed into his hip down into the bone!

Superman shirt for Super Skyler

He was able to have to the therapy dog come so he could pet and feed him.  I love these dogs, they make the kids so happy.

Out in the halls doin some wheelies with his dinosaur.  The dinosaur was doing a "wheelie" too!

Tonight I am humbled and full of gratitude.  I am so grateful for the many of you who have donated their money, for those who have sent a card, a present, dinner, words of encouragement, and the many prayers that have been said on our behalf.  I cant even begin to tell you how much these things mean to me.  Even in the midst of dealing with a living nightmare, we have received many blessings.  My eyes have been open to all the good that is in this world.  You make me want to be a better person.  I have learned so much about myself and about the person that I want to become.  We have been on the receiving lately of so much service, thoughtfulness, kindness and generosity.  For this I am truly grateful.  I cant tell you how many times I sat there and thought "How am I going to get through this?" and then someone comes or sends something to cheer me up.  I have seen so many beautiful smiles from Skyler because of you.  Thank you from the bottom of my heart for making this cancer journey bearable.


lea said...

Yay! Im so excited for the good news...after we chatted in the hall I was nervous for you. Im SO GLAD hes doing better. Hang in there...hes doing amazing. What a great Christmas present!

Tammy said...

Crystal I love reading your blog and the updates on your little fighter. We pray for him daily and love you both. Hoping this next year brings you all the happiness you both deserve.

Merry Christmas!

lindsay Roscoe said...

I believe it is your lives that have touched us and makes us all want to be better people. I hope this Christmas stays at an even pace for you guys. Merry Christmas to your family!

Amanda said...

We will say some extra prayers tonight for Skyler. I am so grateful his little body got things under control all by itself. He is a SUPER in so many ways. We love you and hope you have a very Merry Christmas.