We had a long day today. We left at 5:45AM for the hospital so Ty could be on time for his first radiation treatment at 7AM. Then we went upstairs to see his team and he was put in a room in the day hospital so he could receive an infusion of the new chemotherapy I mentioned previously (Avastin).
Ty tolerated that very well, but he was very irritable just being in the hospital because he wasn't allowed to eat or drink anything besides water or apple juice - he had a followup radiation treatment scheduled later in the day which required additional anesthesia so he had to remain "NPO". So, we had a very cranky boy who wanted to go home and couldn't understand what was "taking so looonnng!?!?" Luckily, there was a talent show taking place in the Day Hospital today and that kept us entertained for a while. I enjoyed it so much and I'll never forget it.
Some of the acts included a six-year old boy who played jingle bells on the guitar, a nine year old "cowgirl baker" who was dressed up and shared a quick how-to on baking cookies, a four-year old boy who sang Justin Beiber's "Baby, Oh," and a five-year old boy who did the Salsa with his older sister. I was also so impressed with Dr. Cheung, an older attending who got up in front of all the kids to sing "You Got a Friend in Me!" from Toy Story. It was so endearing. I love him so much more now that I see what a softie he is. He is not on the neuro-oncology team, but he is often the attending on the floor when Ty is admitted overnight on the other side. Ty signed up to tell a couple of knock-knock jokes, but we got called away for an appointment with his team and by the time we were done he didn't want to go back in the room where the show was taking place. I'm so sad we missed that opportunity because they were taking pictures and videos of all the performances... how cute would that have been? Of course, I would have shared it with you all. In fact, I wish I was allowed to take my own pictures and videos and post of some of the other acts because I know you would have been as touched as I was by these amazing kids.
It's just so strange, this world we have been thrown into. Lou missed the show and was asking about the boy who did the salsa dance and I described him as the one who was getting sick in the hospital coffee shop last week and I helped his mom clean up. This is our new normal, and it's just so wrong. Just seeing how many kids were packed into the toy room today for the talent show is a big reminder of how many families are in this same warped world with us. Some day, it will be different. New treatments need to be found. Period.
Ty also saw his radiation doctor today, and she said he's doing great. She said the throwing up last week is definitely caused by the swelling from the radiation, but she thinks he has already experienced the worst of the side effects. Especially now that he has the Avastin on board. I hope she's right!
Last, I want to share a small milestone for Ty. He helped to strap himself into his carseat for the first time, ever. He was strong enough to put the top clip together, and helped me to push in the other ends of the harness at the bottom. I was so proud of him! I also think he is officially potty-trained again. He hasn't had a dirty diaper in three days, and he acts as if going on the potty is his new norm. Fingers crossed for my big boy!!!! I just can't believe it!
Of course, I forgot to bring the attachment for my camera so I can't upload any pictures unless they are from my phone. As soon as we get home I will post some of the great pix we took at the beach.
Goodnight and love to all of you. Thank you for your support.