One thing I've certainly learned is that we can't plan ahead during this journey. In fact, last month we received a folded card from our team at MSKCC that outlined Ty's chemotherapy schedule and clinic appointments from June through August. Lou and I were so excited, we didn't even know they made calendar cards at the hospital because we never had a plan before. So much for that. Clearly, our plans changed when we rushed to urgent care and found that his tumors required additional surgery, radiation, etc. Change of plans... as usual.
That being said, Ty did not begin his radiation therapy today. Not a big deal, it was only delayed one day. We start tomorrow. I will be waking up with the sun and riding back and forth into the city for the next three weeks. This time the radiation team decided to use conventional treatment as opposed to the IMRT he got the last time. It was explained to us that this decision was based on the size of the area in which they want to hit (the entire cerebellum rather than pinpointing a focal area) and the ability to prevent any radiation from hitting the brainstem area with this approach. We put our trust in them completely, and pray this is Ty's best option.
Ty will be starting a chemotherapy called Avastin during the course of radiation. Avastin is not a drug that will kill the cancer, but it controls the integrity and growth of blood vessels, in particular the capillaries that a tumor needs to grow beyond a certain size. It also helps to prevent swelling without having to put Ty back on steroids. The hope here is that the Avastin will keep Ty comfortable during radiation and prevent any new tumor growth over the next few weeks until we can try something more aggressive. Fingers and toes crossed, as always.
Ty had a very good day today, but we had one terrible "fight". I had to put him in his room to cry it out for a while today - he was simply misbehaving and not being nice - and he started screaming out, "Mommy! I hate you!" for the first time, ever. I thought I would have been horrified, but it really didn't bother me much. I totally remember doing that to my mom, even at an early age, so I'm okay with it. It's a little sad, but we both got over it quickly and had a lot of fun after that.
Today, Ty ate more than I've seen him eat since December. It was a non-stop food fest for one of the pickiest eaters on the planet. I'm proud to say that he had steak, chicken, bacon, noodles, goldfish, pretzels, lollipops, pineapple, apple, yogurt and fruit snacks throughout the day. Not too bad! Of course, Gavin ate twice as much but he also weighs 33 pounds to Ty's 25 pounds. He's a hungry boy :) Here he is wearing an Iron Man Mask that Ty received as a gift in a very special care package a couple of months ago. He's so cool, he wears it off to the side :)
Last week at the hospital I saw something incredible. There was a mom who was there by herself with all four of her children under seven years of age. Three young boys and a baby girl who couldn't be more than 10 months old. I am still in awe of her. People always tell me what an amazing mom I am because I am doing all I can for Ty, but I'm nothing compared to her. Lou comes to the hospital with me often, and we never bring Gavin along because it's just too difficult. Here's a woman juggling all four of her young children, one of whom is undergoing chemotherapy, and doing it with patience and a smile. Now that's amazing.