It was hard to figure out a way to explain to Ty what is happening. Why we have to go to the hospital every morning and why he has to go into that scary room with the huge machine, go under anesthesia and then gear up for the long drive home.
Lou was great. He told Ty that he has to go for Super Hero treatment every day, and that we have to be patient because it's going to take a long time before the super powers begin working. He said that Spiderman had radioactive blood, and that Ty's radiation will make him strong like Spiderman. I guess at 3 years old that is a good enough explanation :)
So far, everything is going okay. Ty doesn't seem to be suffering from any side effects, and he comes out of the treatment feeling pretty good. His bigger problems lie in the steroid myopathy that he suffers from and the fact that his brainstem is still so inflamed. He isn't able to eat lately because of this, even when he wants to (we feed him formula through his G-tube) and he still has bouts of nausea and head pain. It sucks, but it can and has been so much worse so I am happy that he is doing as well as he is.
In fact, today Ty took a bath. I put on a bathing suit and I got in the tub with him because he is otherwise too weak. It was a very special moment, one that I will always cherish. He hasn't actually gotten into a tub since December and he really enjoyed the feeling of being submerged in the warm water. He even smiled wide and told me I was tickling him when I washed his feet. Just knowing he could feel me washing his toes, and that he was enjoying it was so reassuring. At one point he when he was quietly staring out the window I asked him if he wanted to get out and he softly said "no." It felt great to be able to give him that time doing something that felt really good. He deserves that. Obviously he deserves much, much more than that... but for now we will take it. Baby steps are okay with me, as long as they lead him to recovery.
Tonight, the top of his head smells even more delicious than it did when he was a newborn. I can't stop putting my nose to him. Big smiles :)
Thanks to all of you. Here is just a very short and sweet video clip of Ty back in November during his second round of chemo. He says "thank you everybody!"