Today started as they all do… playing with Play-doh while waiting for his treatment, then waking up groggy and hungry. Day 12 of radiation, done!
A funny thing happened when we were leaving St. Jude. The parking lot was very full today when we left and a van that parked behind me kind of made their own spot. The problem was I could not back my van out of the spot I was in. After several attempts at backing up without hitting the van behind me, I heard a man hollar that he would help watch and make sure I didn’t hit the other van. I got out of my spot successfully and thanked him.
Fast forward to my kids playing on the playground today. The guy walks up to me and says, oh hey, Van! HA HA! So I thanked him again for being so kind while my grumpy sleepy little guy was in the back seat and we just wanted to go home. We started talking more about our kids and turns out his son also has a brain tumor (different type) but is on our same treatment schedule and plan. Their son also has an older brother who is 7. It’s nice to meet people who are going through the exact same thing we are. We talked about how our lives changed so suddenly when the tumor was discovered, going through surgery, and then choosing St. Jude for treatment. All of the same things happened to their family about the exact same time, only in Georgia. The benefit of living in the St. Jude housing is to be able to meet other families like us. It’s funny that life connected us in an odd way, but also comforting.
I picked up Tyler from school a little early and we all played on the playground in the beautiful Fall weather for a couple hours this afternoon. It was so wonderful to see the boys make instant friends with the other kids here as they ran around and played hide-n-seek and tag.
We ended the night at Tyler’s school with his soccer practice and also a parent/teacher conference. I was nervous to talk to his teacher because I wasn’t sure how Tyler was adjusting to his new school, although he seems to really like it when he gets home every day. He got his first report card ever and did so well! They rate them in various categories from 1-3 (3 meaning they have mastered the skill). Tyler scored 3’s in almost every category. The ones he didn’t get a 3 in was mostly because they haven’t covered the topic yet (these are year long goals). It was great to get some feedback of goals I can work on with him, and also to know that his past school gave him such a strong foundation to keep moving forward and being successful in any environment. I’m so proud of him!
And while all this was going on Caleb played on the school playground. He went to rub his head and his first patch of hair fell out. So, it begins I guess. We were told by the end of week 2 of radiation it would start falling out in clumps. So, he’s still got a pretty full head of hair but it’s all starting. It’s only hair so I don’t know why it’s really that sad, but I guess it’s because of what is represents. When you think of cancer treatments and chemo, etc you think of bald heads. It’s hard for me to think of Caleb as a cancer patient. He’s just my little Caleb. So starting to see the effects is emotional in a different way. But we are talking to him about why it is happening, and we will get through it.
I am looking forward to tomorrow being Friday, but we have a long day tomorrow. Caleb has labs in the morning, then his normal radiation treatment, and then another simulation to make sure he is lined up for his change in radiation treatments next week. Then later in the afternoon we have a clinic appointment with his Neuro Oncologist. So our whole entire day will be spent at St. Jude, but when tomorrow is over we will celebrate his final full brain/spine treatment and moving on to the next phase of radiation!