Sunday, July 3, 2011

I know I am so behind on my updates, but I just havent had a computer to do so.  The nuclear testing done this past week went well.  His whole entire liver lit up, but nothing else so this really didnt tell us anything new.  The good news is it didnt light up anything else in his body.  The test its self was interesting.  We went in Thursday morning to draw blood so they could take out his white cells and attach the radioactive stuff to it.  They had to draw so much blood from him to get enough white cells that it actually made me woozy.  I draw blood from his line everyday but the most I draw at one time is about 6 mls, with this test they attached a HUGE syringe and drew about 40 mls.  I was expecting him to pass out any minute from lack of blood, but he did great.  It took about three hours to take it to the lab and to do all that fancy stuff to it before they injected it back into him.  Then the next day we went in for the scan.  Its done in the nuclear testing room with a different machine and the scan itself is an hour long.  They asked me if they thought he needed to be sedated for it or not because he was so little and he had to lay completely still for an hour.  I left the decision up to Skyler and he chose to try it without sedation.  We decided to prep him for sedation before just in case he needed it.  Everyone kept trying to tell me that because he was so young and that the test was so long that they were probably going to have to sedate him, but I told them he chose not to so thats what we were going to try and do.  Just like the superhero he is he proved them wrong.  He layed in the machine for one whole hour without making a sound or moving at all.  I was so proud of him.  I was so happy he was able to do it how he wanted it.

The next morning Skyler was able to be in the West Bountiful parade.  He rode in an awesome old car and threw candy out to everyone.  He was so excited to do this so I am so grateful that they let us be home for this.  He did great and loved it!  As we were riding down the street where my mom lives everyone got on their feet and were clapping and cheering for Skyler.  It was one of the neatest things to see.  I totally started crying.  I will never forget that moment and the love and support that was shown for him.  I am also grateful to Ron (he owns the car) for doing this for Skyler.  It was such a special thing and it gave Skyler something to look forward to and get excited about. We were also able to go watch the big fireworks the night before and also had family come over to our house to do fireworks there as well.  He had so much fun and it was so fun for me to see him enjoy himself and doing normal things.  I am glad we were able to spend this weekend at home, he needed this.

Today we were admitted to ICS for our final phase before maintenance.  In this phase he is given really high doses of methotrexate.  This is the chemo that they put in his spine.  When we got here they started by giving him tons of fluid to hydrated and get his body ready for the chemo.  He has to have a certain amount of urine out before they will start.  Then they will give him a bolus of the methotrexate (it goes in fast) then he will be on a constant drip of it for the next 23 hours.  He will also be getting two other chemos with it as well as ALOT of fluid.  This high of a dose can hurt his body if it just sits there so the reason they give him so much fluid is so he can rid his body of it faster.  They will check his levels everyday and as soon as his level gets low enough we can go home.  We will be home for about 10 days before we come back and do it again.  He will have to repeat this four times.  I am pretty scared and nervous for this especially because he is getting so much fluid but it will increase his survival rate by 10% so its worth it.  If he gets too fluid over loaded then they will give him a drug called Lasik to help his kidneys get rid of the fluid faster.  When he was really sick and in renal failure he was on a constant drip of this drug and it didnt do much so they put him on dialysis.  This is scary stuff that I dont want to repeat.  So far so good though.  They just started the bolus of the methotrexate and his eyes are alittle puffy but not too bad.  They have to get him to go pee every two hours even at night so hopefully he can get rid of this fast so we can go home sooner rather than later.

He is still having unexplained fevers, so while we are at the hospital and being monitored closely they are stopping all antibiotics to see if his fevers are drug related.  Its so hard not having answers so hopefully we can get some soon.

You cant really see these pictures too well because they are from my phone, but this is Skyler in the scan.  The top came right down over his face and he had to lay just like that for an hour.  I think I would have freaked out.

My parade pictures arent uploading right now so I will show you those as soon as I can get it to work


ana said...

Skyler is so brave, I am in awe of him. I think anybody would have a hard time lying in that scanner for so long, he is simply amazing!!!!

I am so glad to hear that he was able to re-start chemo, one step closer to maintenance!!!

kate said...

Skyler, you are so amazing! Keep it up!

Kristin said...

Just got back in town and getting caught up on Skyler, he is amazing! I love that he proved everyone wrong. Hope everything goes well with the HD methotrexate. Good luck, and thanks for keeping us updated!

Cacá said...

Skyler and Crystal, you both deserved to have the awesome weekend you had!
Best wishes to you *from Brazil ;)

Susi said...

I wish I could have been at that parade!!!!!! Hope everything goes as well as possible this week!! I know I've said this before but Skyler is my hero :)