Thursday, April 7, 2011

Clinic went well this week.  Skyler got another dose of Vinc and Doxo and has been doing well with them so far.  He still gets nauseous and throws up, but it hasnt been unbearable.  His bone marrow results came back and he is still in remission!  Im so relieved. I always get really anxious waiting for that report to come back.  Skyler's ANC also jumped up from 900 to 5600!  I was expecting it to drop really low so I was really surprised.  I thought I was looking at someone else's labs at first.  The doc says that sometimes they will jump up before they drop, and they will drop within the next week or two.  One thing that I am worried about is his bili has gone up along with his AST and ALT (liver function)  The bili isnt too high and its still in the normal range but the AST and ALT are alot higher than I want them to be.  We will just have to keep a close eye on them.  Skyler doesnt look yellow (jaundice) but his coloring looks a little off to me.  His hematocrit was low, not low enough for a transfusion but I think he may need one here in the near future. 

Skyler is a champ now when it comes to taking his meds by mouth and eating.  He definitely doesnt like to do it but he does it anyway.  I am so proud of that boy!  I thought he was going to have to have that tube in for at least another year.  He continues to amaze me everyday.  I am in awe of his strength and courage.  He has had to go through so much yet he still is the happiest and sweetest little boy.  He has a heart of gold.  He is always thinking of others and ways to make them happy.  The other day we got alot of Easter stuff to make.  We decorated eggs, made Easter cookies and filled Easter eggs with candy.  When he was done he had to make sure EVERYONE had one of each.  He gave away all of his stuff to his cousins, Ty, me, grandma and grandpa.  He didnt even leave any left for him even though he was so excited about me getting all that stuff for him.  Thats just how he is, he is happy making others happy.  I really am so grateful to be his mom.

Im not sure if I have written about this before, but a couple months before Skyler was diagnosed he had part of a lump removed from his jaw bone.  A year prior I noticed the lump.   I decided to keep on eye on it but it just kept getting bigger.  It got so big to the point that it was noticeable just looking at him.  I took him into an ENT and he said he needed to have a biopsy of it to make sure it wasnt cancerous.  To be able to have the surgery done he needed to be five weeks free of croup.  That never happened.  A year later of trying (I cant believe they let us go that long) the ENT said that he wanted to do the surgery anyway and also scope his throat to see why he was getting croup so often.  So finally in May they did the biopsy.  They took a big chunk and were supposed to send it to pathology, but it never made it there.  They had to redo the surgery  due to staff error.  I was so angry.  Good thing they left a little in there though so they could do the biopsy.  The problem though was that the mass that was left was intertwined with the nerves in his face.  This one was going to be more tricky because if they nicked a nerve then he may lose function on that side.  They did the biopsy and it turned out they did nick a little nerve and he lost function of half his lip on that side.  It did go away though within a couple months.  The results came back saying that is was a Lipofibromatosis.  A mass of fatty tissue that will just keep growing back.  We were so happy that it wasnt cancerous.  Little did we know that just a few months later he would be diagnosed with Leukemia.  Anyway, so lately I have noticed that once again he is losing some function in that part of his lip.  When he cries, that part of his lip doesnt move right.  I can also feel that the mass is growing back.  I am so worried about him.  I would hate for him to go through another surgery and lose more function because it could be more than his lip this time.  He has an appointment Monday with the ENT to check it again.  We dont think he will do anything now but we want him to be involved again to keep a close eye on it.  I really hope doesnt cause more problems, especially now that he is in the battle of his life with Leukemia.

                                             This was after the first surgery

This was the second surgery.  They had to place a drain because it was draining so much blood.

You can see the tube from the drain in this picture

This is the scar.  One of the MANY battle wounds he now has.


Anonymous said...

I am glad things are going okay this week. I hope and pray that each week he will get better & better. Little Skyler has been through so much. He is always so brave and such a fighter. His smile always melts my heart. He really is a SUPER HERO :)

Jen Beckstrand said...

Love you guys! Tell Skyler thanks for my Easter Egg! I was so excited that he remembered me. Can't believe all that he has been through. I still remember being so worried and then relieved after the whole mass thing. Just to have it all shattered such a short time later. You are so strong and I really look up to both of you!

suzie said...

My goodness gracious!!!......this perfect boy has been through sooooooooooooooooooooo unbelievably much in his little life thus far and I just can't believe it!!!! He is such a pillar of strength and so brave. I know I say it a lot..but I can't help it...its true...Heavenly Father must really have so much trust in him and have a xtra special place in his heart for ur little skyler....your one lucky mama to have him as ur son and I know he knew exactly amazing of a person u are as well....perfect duo! I will keep continuing to pray for the both of u and with him going in to check on his little jaw.
Tons and Tons of admiration from AZ,

Chelsie said...

I hope his liver numbers come back down! I think most kids need transfusions during DI.

His scar is seriously 1 inch toward the chin away from Daph's. Though her surgery was about 12 hours before diagnosis, so the steroids did a freaking number on it. We'll probably have to get some reconstructive surgery on it. When her face swelled it got a stretch mark on it and everything. It was 11 months ago and its still bright red.

I hope things go well with the ENT. Will it grow back and have to be removed even as an adult?