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)