Monday, December 13, 2010

I cant believe its been 4 months since I heard those dreadful words "Your son has cancer"  That day my world fell apart, my heart was crushed.  Cancer?  This cant be happening to my child I thought.  I thought the worst part of my life had already happened when Ben died.  I remember being in the emergency room seeing him lay on that gurney and looking so sick.  Those couple of weeks prior I knew something wasnt right.  I wasnt sure what, but I knew in my heart that something was wrong with him.  I never in my wildest dreams thought it would be Leukemia though.  But seeing him lay there so weak and sick, tummy swollen, eyes puffy, and covered in bruises it all made sense.  I look now at the symptoms of Leukemia and he had every single one of them.  My poor little guy had been suffering for awhile and I didnt even know it.  It just wasnt him being lazy and wanting me to carry him, he was actually hurting.  His bones and joints were in pain.
I think back to that day and it seems so long ago.  He has been through so much since then.  What was supposed to be a week stay in the hospital and then outpatient chemo treatments from then on, has turned into a 4 month stay and 3 of those months have been in the ICU.  Its crazy the way your life can completely change in an instant.

This week we havent seen too much change, but the little changes we have seen have been for the better.  Skyler is now on just a nasal cannula most of the time.  We just put him on high flow when he is asleep.  They did a chest x-ray this morning and it was the best I have seen so far.  Thats so exciting!  We also have been able to go down on the time he is on dialysis.  He was on it continuously, then they were able to go to 12 hours on and 12 off, then they went to 8 hours on and then today we just did 6 hours hooked up to the machine.  He also peed today all by himself.  I never thought I would be so happy about my son going potty.  I will never again take for granted the great power of pee!
For the platelet issue, the blood bank has been sending us platelets that are more matched to Skyler's own platelets.  We havent really seen a huge improvement until today.  His platelet count was 19 this morning so they gave him a unit and it jumped up to 148.  Holy Hannah thats high for him.  I dont think his counts have been that high since he got diagnosed.  About five hours later they checked his counts again and it only dropped to 68.  Thats still high for him.  Im so excited about this.  I know in the morning it will probably drop low again but Im just so excited that they were able to go up that high for awhile.  Yay!!
Today the surgeon also came in and scraped out all the dead tissue in his bum wound.  They sedated him for it because its quite painful to do.  At least they were able to do it at the bedside instead of the operating room.  Thats one of the nice things about the PICU, everyone comes to you.  They do so many procedures in here that you would think they could only do in surgery.  We had the music therapy lady come in and sing to Sky while they gave him the "happy drugs" to knock him out, and he woke up soon after they were done wanting a popsicle.  Overall it went well.  The surgeon said it actually looked better.  He may not even have to get it grafted closed.  It may just heal on its own.  Of course it will still take weeks to heal but that would be so great if he didnt have to have it surgically closed.  Again...Yay!!
This week Skyler also got more chemo.  He is getting it for 4 days in a row.  Im so grateful he is to that point now where they can actually give him his chemo.  One of the drugs they give him will hurt his bladder if it stays in there, so since he is on dialysis and not really peeing on his own they had to stick a foley catheter in and irrigate his bladder.  So every two hours they have to pump his bladder full of water and let it drain out.  Not a fun thing, but he did great with it. 
It just amazes me day after day at how brave Sky is.  Being an adult I cant even imagine having to go through all the things he has so far.  All of these little cancer kids amaze me. 

This is Skylers new thing.  He will pull the covers up over his head and hide from the nurses when he doesnt want them to touch him.  (thats part of his little bald head with that blue band on it)
This is the face that most everyone around here gets lately.  He is just so fed up with people messing with him, he will glare at them and tell them to "Go Away!"  I dont blame him.  If it was me they would be lucky if thats all they got was a "Go Away!"

This is a pic of the surgeon scraping out his wound.  If you look closely you can see that Skyler's eyes are still open.  He is totally out in lala land right then but the drugs they give him sometimes make it so his eyes are still open.  Its kinda creepy to have him look right at you but know that he really isnt there.  You can also see part of the music lady's guitar.  She was in there the whole time singing to him.  I love it because she has such a pretty voice, it always relaxes me too. 

This is Sky getting one of his Chemo drugs.  They have to wear a special gown and gloves to administer it because it is basically poison.  Yep, Im just standing back and letting someone push poison into my son.  Its very nerve racking even though you know that that's the only way your child can get better.  They have to call a nurse from up on the 4th floor to come do it, so its nice to be able to see some of the nurses up there that I love. 


Dani said...

He looks so good! Is his liver doing any better or is that something you can't really tell? His coloring just looks so much better in these pictures. I think he has a right to say more than "go away" also. I bet he is so sick of everything. I am so glad he is doing better! We are praying that this roller coaster stays up this time. He is one amazing little fighter (and so are you) Keep it up!!!

Chelsea said...

I agree with Dani, his coloring looks SO much better! It is classic Skyler to fight any way he can, he knows he can't run away, so hiding under the blankets and glares will have to do! I think you should give him a large syringe full of water to squirt at those darn nurses everytime they want to mess with him! Go get 'em Sky! Hugs to you both. XOXOX

lindsay Roscoe said...

What a wonderful hopeful post. Thank you for sharing with us all. This makes my day. I am so grateful to hear that his platlets can improve even if it is for a short time.

Cristina said...

We found your blog through Cami Carver's and have been following your and Skyler's amazing journey to getting better! Recently my five-year old daughter saw Sky's pictures on your blog and she's been praying for him ever since. She asks me every morning, how is Sky doing today? We believe in the power of prayer and in a loving Heavenly Father who listens and loves Sky so much. We're so so very happy and humbled by his improvements. We'll keep on praying that things will continue to be on upswing! You are one very tough momma! Carry on!!!

Anonymous said...

Oh Crystal, I thought Daphne was being lazy when she wanted me to carry her, too! When she started falling asleep in the middle of the day (she hasn't napped for a long time) I thought maybe it was a growth spurt and she needed more rest. There are so many more reasonable explanations for these things than CANCER. And lots of times we don't want to look or feel like paranoid parents- cause what are the odds that it is anything- let alone something so serious.

We hope everyday that Sky does better and cheer for even the little things. So glad things are getting even a little better.

Anonymous said...

What an awesome post! I'm happy that it was good news! I love the little attitude that he pulls the blankets up. holy junk i would be doing the same thing. FYI: the pic of Skyler on the far right in the blue hoodie..its my absolute favorite!

AmberLee said...

So glad to hear that Skyler is having a good week! I continue to pray for him each day. And for you as well, what amazing strength you both have!

Miss Deja said...

You are one incredible mom! You are Skyler are my heroes, truly!

lea said...

Yeah!!! How steps are awesome. I think the fact that hes fighting the nurses a little is a sign that hes feeling better! And hes definitly earned the right to say go away! Hang in there...Im so happy for you and your tough little Sky. Lots of prayers still coming your way!!

Cami said...

That makes me laugh that he hides. It goes to show that he is a better person than me too to jsut say go away. I fear what I might say to dr.'s and nurses after 4 months! :) You both are still in our families prayers! Give him a little hug from a stranger names Cami :)

Michelle and Sean said...

We are praying for Skyler and for you!!

Hope he continues on this path of feeling just a tiny bit better every day.

We will be having appts next week so I'm hoping to drop off this stuff that we have for him while we are there! They aren't Christmas gifts but they can be now if he wants since its so close to Christmas!!

cjmom said...

The music lady has learned to play the guitar with her gloves on. So nice that she can bring some music to your sweet little boy. Prayers are coming daily (Lula's sister-in-law)