Saturday, May 21, 2011

Tonight we found ourselves up in ICS so Skyler could get a platelet transfusion.  These past couple of days he has been bruising like crazy, and then yesterday when he fell off a chair he got the biggest bruise and lump on his arm.  At first I thought it was his bone sticking out because it was so big but it end up just being swelling.  I called clinic and they said to mark it and ice it for a half hour and see if it helped the swelling, if it didnt get any bigger we were ok to just watch it instead of coming in.  Thankfully it didnt spread and we were able to avoid another hospital visit.  Today, however, was a different story.  He woke up covered with petechiae.  These are little red dots on his skin caused by low platelets.  He had them when he was first diagnosed and then was covered in them down in the PICU.  He hasnt had them for awhile so I knew he was down in the single digits.  He also got a bloody nose for no reason, also a sign of low platelets.  His platelet count ended up being 7 today.  A normal count is anywhere between 150 and 400.  They ended up admitting us, but it was nice going in knowing that we were only going to be there for a couple hours. 

This week has been hard.  Tanner, a 19 year old boy from our cancer community passed away.  Although I have never met him personally I have followed his blog closely and his passing broke my heart.  Also another young man with cancer was put on hospice, and another little boy who is on his last round of chemo is down in the PICU now.  It just seems like so much hurt and sadness has been happening in our little cancer community.  My heart just breaks for these families.  Skyler is doing well right now considering where he has been that sometimes for a brief moment I forget how bad it was and can be, but when I hear about these sad stories and see Skylers name in the column on others blogs under fellow cancer fighters reality sets in and those raw emotions come back.  For the most part I havent been able to forget that cancer is apart of our lives.  Skylers crazy IV med schedule has taken a toll on us.  It seems like I am always hooking him up to something.  We only have a few hours out of the day where he is unhooked and we can get out of the house.  It also scares me because the more I access his line the greater the infection risk, and I am accessing his line ALOT.  We are going to keep on this schedule until the end of this phase and then start tapering off.  The end of this phase cannot come soon enough!  Overall though Skyler is doing well.  This is something that I dont take for granted because I know how bad it could be.  He has started getting mouth sores from the chemo, but he still hasnt thrown up at all.  He is taking oral chemo everyday and for the last 4 days I have been giving him IV chemo and he still hasnt thrown up...very impressive.  Even though there has been alot of sadness that comes with cancer, there has been alot of good as well.  Today one of our little cancer friends received his LAST dose of chemo!  I am so happy for his family and look forward the day when Skyler will receive his last dose of chemo.  As Skyler would say, that will be a happy day!

 This was after changing Skyler's central line dressing.  Its a sterile procedure and Skyler absolutely hates it, so Im greatful when I have a helper.  I have to keep my hands and the and the things Im working with completely sterile so its much easier when Skyler isnt screaming and moving around.  This time my brother Ty helped me, he always helps take Skylers mind off the fact that Im srubbing alcohol on that little hole in his chest.

This is our chemo arrangement.  Makes me feel a little uneasy about the fact that Im pushing a drug into my sons body that comes with an Emergency Response Pack.


suzie said...

He is continually in or prayers! Crystal, I know u already know this, but I just have to say it again..........your Little prince is just ABSOLUTELY AMAZING!!!!


susi and adam said...

Our prayers and thoughts will continue to be with you guys. Much love! Susanne

Meghan said...

I was reading your blog today and my little guy saw Skyler's picture. My little guy, Atticus, has ALL too. He said, "look Mom, he's smiling when getting a pokie!" I told him that he was already accessed but he didn't care. He thinks it's great that Skyler is smiling through his mask. Atti is 4 and asked if the pics of Skyler on the side were of himself. :)