I hate when I get overwhelmed because I fall behind in my posts and it is so important to me that I keep blogging about this incredible journey with all of its ups and downs. Thanks to everyone for checking in after seeing the delay. My only excuse is that the past four days have been totally hectic and filled with their fair share of such ups and downs. Here we go...
Thursday: Hospital day. Ty did so well. Both of the neuro teams (oncology and surgery) reassured us that his eyes have improved, that they show no signs of permanent damage and that we just need to be patient. Thanks to all of you who recommended patching. His doctors also felt we should give it a try to see if it would make it more comfortable for him for watching TV. We picked one up on Friday, the same day that Ty received an adorable gift with the most perfect pirate themed "do-rags" in the mail. Fortunately, Ty has gotten so much better in the last couple of days we haven't even needed to use it. Check out how good he is looking in this picture! They aren't 100%, but they have improved so much you wouldn't believe it. I think it has helped to lift his spirits over the past couple of days, too.
As you know, Ty was also scheduled for Radiation Simulation on Thursday. Poor kid had to go under anesthesia for that and his appointment wasn't until 2PM so he wasn't allowed to eat or drink ALL DAY. He was such a sport about it though, he barely even complained. When Ty is "NPO" I try not to eat or drink either, but I was so much weaker than he is and I snuck two cups of coffee and a granola bar! Bad Mommy! :) Overall, it was an okay day. Ty was extremely cranky by the time we got home, but he is allowed.
Friday: We followed up with the radiation team who said they will begin ASAP, most likely Tuesday or Wednesday, and we can expect a three week course of radiation therapy. That means I'll be driving into the city every morning again, Monday through Friday, for three weeks starting Tuesday.
We then decided to drive out for a visit with my Mom and Dad and to spend the night with them on Long Island. Ty was in a pretty bad mood all day and he actually ended up vomiting a few times which hasn't happened in so long. I can't tell you what this does to me and Lou. Our minds race... we immediately worry that it could be the tumor growing back on his brainstem... or maybe he is suffering from hydrocephalus yet again... could it just be that he took his medicine on an empty stomach? It was terrible and it caused me to be very depressed all day. I just couldn't shake it. I was so glad, though, when Ty agreed to go to Grandma and Pop-Pop's house around 3PM. Sometimes I just need my Mommy, too.
When we arrived Ty played nicely with his grandparent's, Gavin was having a ball, and when Ty was ready to go to sleep early (7PM) I just crawled in right next to him and I slept, too. I was so sad and worried, I actually crashed and slept straight through the next morning. Which, I am pleased to report, turned out to be a much better day. A turnaround day.
Saturday: Ty was in pretty good spirits for the morning/afternoon, and then he had a wonderful night. Most importantly, he didn't get sick again so Lou and I were able to breathe a bit easier. Of course, the question of why he got so sick on Friday is still lurking in the back of our minds, but that is just par for the course.
We had a lot of visitors throughout the day including my Aunt Janie, Aunt Barbara, Great Granny and Uncle Billy, but Ty was just too shy to enjoy the company. Instead, he wanted alone time with me, Lou, Pop-Pop and Grandma for most of the day. At one point, I took Gavin for a walk down the block to Aunt Janie's house so he could spend some time without Ty getting so upset, and Gavin went for a swim in her pool. It was really cute, just like him. Here he is in a box. Don't ask.
That night, Ty really surprised me. On our way home we went to Long Beach to spend time with our friends and maybe... just maybe... stay long enough to see the fireworks show (Long Beach always has amazing fireworks on the beach the week following the 4th). During the ride in, Ty said he didn't want to go. He cried and whined. He said he was too shy to see his best friend, Eva, but when we got there it proved to be quite the contrary!! Ty was terrific. He really had fun with everyone. It was a full house with some of our best friends on deck, and Ty played so well with everyone. He even sat and enjoyed a game of "Perfection" with Eva, the sweetest girl in the whole world. His coordination is getting so much better, he was able to fit a lot of the small pieces in the right spaces. My heart was singing all night long. It helps that my glass was constantly filled with champagne, too (thanks Anthony and Yaz!). The boys partied all night until after 10PM, they slept the whole car ride home, and they went to bed great when we got home. It was just what we all needed; a good night with loving friends watching our children have some fun.
Sunday: Today was one of Ty's best days ever. He laughed so much, I'm still smiling from ear to ear. I was a little tired and crazy this morning, but Lou let me escape for a manicure and when I got home Ty wanted to take a nap with me. I guess that's just what we needed because we both woke up bright eyed and happy as can be. Ty ate like a champ all day today - and even more exciting - he went in the POOL for the first time since our Make a Wish trip at Disney (December). He was so cute! He was wet from head to toe and he was just so proud of himself. Of course, no one was beaming more than Lou and I. I still can't believe it. My brave boy! This tiny video snippet of Ty laughing at something on his TV show today doesn't even do it justice, but it does give a sneak peak into the laughter that filled this house today. What a nice change of pace for us, and so long overdue. Let's hope this continues!
Some of you may recognize the picture on the right from Ty's Facebook page. It was taken just a few weeks before his diagnosis last summer. I just had to put these two photos side by side because I am amazed at how much Ty has grown (!), yet that smile is exactly the same. Even after all he's been through. Our little fighter, indeed! Be inspired!