We were so excited for the weekend, but then Ty started complaining of head pain again. By yesterday afternoon, after an unsuccessful attempt to manage his pain with Tylenol, we had to resort back to using morphine. It made Ty feel so much better, but it broke our hearts as parents. Why can't he just catch a break? It doesn't really make sense that he would have an increase in head pain and we are very worried - and just so sad for him. It's just not fair!
Ty was weened off narcotics for almost two weeks with very few complaints about head pain. When we gave it to him yesterday, he ended up vomiting twice afterward. Lou and I think it was just a side effect of the medicine since it hasn't happened again, but it broke my heart when Ty said "well, I guess I can't eat strawberries anymore." I tried to explain that it was the medicine, not the strawberries, but he refused to listen to that reasoning. I know Ty and it will be months upon months before he goes near a strawberry. This is upsetting because most days the only thing he eats is pretzels and strawberries. Maybe a couple of grapes here and there. Feeding him will always be a challenge as long as he is on treatment, but I continue to make my shakes from baby food which helps to ensure that he gets his daily nutrition.
I was praying that yesterday would be an isolated incident. Ty slept very well through the night and he didn't wake up until almost eight. He was wide eyed and smiling when I brought him downstairs, but soon the crying began. The head pain was obvious. I had to give him more morphine and now he is feeling better. It breaks my heart that my four-year-old is high on narcotics just to get through the day. This is so not okay.
As I'm writing this post, Ty interrupted to tell me that he doesn't have to go to the hospital because he feels better, and that he wants to play on the floor. When he was sitting and scooting around my house just two months ago, all I wanted for him was to get up on his feet. To be able to stand and walk. Now all I want is for him to be able to sit up so I could put him on the floor with his brother again. I want him to be able to feed himself, to hold a toy in his hands. I am so sad for him in so many ways.
Don't worry, my hope is forever unwavering. I am just sad this morning, but feeling better already because Ty and Gavin bring me so much joy despite it all. Today we will be taking the whole family to a big fundraiser for our special boy, and we are excited to see how many people here in Pawling will come to show Ty their support. The sun is shining and it's going to be a beautiful day.
Here is just a funny picture of Ty with a gummy brain on his forehead. Gummy brains are good for the brain :)
Ty just interrupted me again to tell me that he wants to go to the beach to fly a kite, and dig, and put sand in buckets. We will be heading to Long Beach for a vacation in the old neighborhood soon, and I can't wait to bring him to the beach. I hope he is happy there. We will help him to do all of those things, and try to make it as normal as possible for him.
Here's Ty flying a kite in October 2010, the day before he had his first chemo infusion. This is the last time he stood on the beach independently. Some day he will do this again.