The Past

I am so sorry I haven't posted anything. I always try to be upbeat in my posts and I haven't had a lot of good things to write about so I haven't written. Now that I am fairly confident that I wont burst into tears over my computer I think I can tell you whats been going on. We finished chemo on Wednesday! Yeah! He had his last dose of Gemtuzamub ( a drug he previously had a bad reaction to) without any problems. We dosed him with lots of benadryl and Tylenol for the entire day and although he was irritable he didn't have any type of serious reaction.

On Wednesday he only had one bottle and a few small things to eat. He usually stops eating and looses weight for a few days. We always hold our breath and hope he starts gaining and eating before the docs notice and decide to put in an NG tube (this is a tube that would go in his nose and to his stomach. They can give feedings in it. In the NICU where I work we use these all the time. I have even put them in before but for Critter this is my worst nightmare. He wont even wear oxygen on his face I can see him pulling out the NG tube and us placing it time and time again. If the kid is throwing a big enough fit it is really hard to place a tube. It just keeps coming out their mouth instead of going into their stomach. It is awful and I don't think I could stand to see him go through that multiple times a day).

Eating aside, Critter has acquired a really bad rash. He gets a chemo drug called Ara-C. It is the backbone of his treatment. It can cause skin reactions. Critter has one of the most severe skin reactions any of the docs have ever seen. They all come in to gawk at him. (I don't really mind, in the medical field any type of unusual thing you can learn from is really interesting to see). Usually they get this rash on their hands and feet. Critter has it on his head, face and arms from the elbow down. It is just like a really bad sunburn. It blisters and peels, burns and itches, and it causes the skin to be paper thin. He is getting sores behind his ears from his ears rubbing against his head!

Anyway it is painful and irritating. We wait until he is miserable and then give morphine for the pain. The morphine doesn't put him to sleep, it puts him in a dazed, drugged out state. It makes me sick as a parent to know I am doing that to my child but the other option is pain. I have struggled this past week because I am all of the sudden so tired of watching him suffer. I haven't felt like he is really suffering until now. Usually its a few bad days and then he recovers. Since we were admitted he has struggled. I would gladly take the pain and suffer for him. I think it is harder to watch your children in pain than to be in pain yourself. Whether emotion or physical pain. This week I have been intensely aware of how our father in heaven must have felt watching his son suffer innocently. The atonement means so much more than it ever has.