Jaymun is on his seventh day of the conditioning chemotherapy. They had to almost triple his fluid intake due to the type of chemo he's on, so he's rather swollen and his poor little face is quite puffy. On Saturday they inserted a Foley catheter so that his urine ouput could be accurately measured to make sure his bladder and kidneys are still functioning properly from all the chemo. He was really sore from the insertion and who could blame him? It was painful just to watch him go through it. It took them three tries because he kept pushing the tube out--and then he peed all over them as well! (He is a strong, feisty little guy and lets us all know when the line has been crossed...)
Whenever he goes through anything uncomfortable, painful, or invasive, we try to distract him as best we can. Talking, singing, laughing--anything to take his mind off of what's happening. I stood beside him as he lay in his crib and stroked his little hands and cheeks, bending over him so he would have at least a familiar face to focus on. Despite the dose of morphine he had just before to help with the pain, no one here denies that it's highly uncomfortable for a child to go through such a thing. It makes me grimace just to think about shoving a tube in a place where it clearly doesn't belong--and I had to watch my own baby go through it. Jaymun looked up at me and he was trying so hard to smile in the beginning. Even when he realized that the situation was turning ugly real fast, he still flashed quick grins in between cries of discomfort. His eyes were welling up with fat tears, which in turn makes me want to cry, when I see how much he's trying to be brave and tough it out.
His appetite has really plummeted as well, probably due to all the effects of the chemo. They come in to change his catheter bag every hour, since it fills up very quickly from the high intake of fluids. We can see that this whole transplant process is going to be a long, weary road for us. He's up to nine oral meds a day, some of which are extremely nasty tasting. The next month is sure to be filled with some difficult struggles for his little body. The bone marrow transplant is coming up in two days. Please keep us in your prayers.