Day 1 went really well. Caleb had back to back appointments but was happy to see so many people he knows. Everyone was so happy to see Caleb doing so well. In fact some were even surprised at how awesome Caleb looked and how much energy he had.
Caleb woke up super excited and ready for breakfast! So we went downstairs to eat and he was thrilled by the selections of cereal. In fact he told us we need to get some of these cereal dispensers at home ha ha! We are staying at Tri Delta, which is their on campus temporary housing. It’s very convenient because we can just walk across the parking lot to St. Jude. The weather was beautiful today, so it made for a really nice and enjoyable walk.
Our first appointment of the day was Occupational Therapy. In this appointment they test his fine motor skills and Caleb did awesome. He put pegs in and out of small holes, stacked blocks, cut out shapes, and drew shapes and letters. In the “peg game” he got all the pegs in and out of the holes with his dominant hand in 30 seconds, and anything under 34 seconds is considered good for his age. With his non dominant hand he got them all in and out of the holes in 34 seconds and anything under 43 seconds is considered great for his age! He was even doing some things that 5 and 6 year olds can do. I’m very proud of him and stare at him in amazement at all he can do.
The next appointment of the day was his Radiology Oncology follow up. This is the team of doctors that was responsible for him during his radiation treatments. They could not believe how good he looked. Like they seriously couldn’t believe it and just kept looking at him. They were happy that we had not noticed any side effects that needed to be addressed at this time. They will continue to monitor his scans and we’ll follow up with them again in 1 year!
After radiology we went to Speech Therapy. We don’t really have too many concerns about Caleb’s speech. Anyone who knows him knows his vocabulary is huge and he often cracks us up with the big words he uses. They also ask him to point out certain things in pictures, like which item is smaller or larger, or which item is a different color. He passed the test with flying colors!
After Speech was Audiology. We monitor his hearing loss closely so we can adjust his hearing aids and understand where he is at. His right ear had some congestion and negative pressure, but that could just be from a little bit of sniffles that he has. Nothing to be concerned about right now. His left ear was clear and didn’t show too much change from last time. The crazy thing about side effects from treatment is they can take up to 2 years to show up. So monitoring him closely is the best thing we can do. Caleb also got to pick out a color for new ear molds for his hearing aids again. He picked out a bright yellow this time. The new colors keep the kids excited about wearing them and he really needs to be wearing them to school!
Here is the chart of his hearing loss at our last visit in October, and today. It’s pretty technical, but you can see the drop off in hearing is even more extreme on today’s chart as you get into the higher frequencies. He is now considered to have “moderately severe” hearing loss. Definitely a tough pill to swallow for us, but also a small price to pay for life-saving treatment. Considering this is Caleb’s most severe side effect, we are very blessed.
After Audiology was Physical Therapy. Again we are super lucky that we have no concerns in this area. His strength and balance are great! He walked some lines, climbed some stairs, and played soccer with the physical therapist. He again was amazed at how awesome Caleb looks, and we’ll check in with them again next time we are in town.
After Physical Therapy was his Neurology consult (yes we had a lot of appointments today ha ha!) Neurology closely monitors the risk for seizure activity, so we talked about that. He has been off his his anti-seizure medication for a little over 4 months and we have not seen any seizures. He also checked Caleb’s strength, looked at his eyes, and checked his balance. He was very pleased with everything he saw. He did say that seizure activity could still occur up to 2 years after, but right now we don’t see any reason for concern or any reason to put him back on any medication. We will follow up with Neurology again on our next visit.
Our last scheduled appointment of the day was Assessment Triage (A/T). This is where they access his port for a blood draw to check his counts. We will find out his counts tomorrow morning when he has his clearance visit for his MRI.
After that we walked back to Tri-Delta and Caleb was begging me to go play on the playground for a while. There were a lot of kids out playing and it’s always great to see kids just forget about their troubles and play. Caleb became really friendly with one little girl and her brother. As their dad and I were watching them play we started chatting. A little bit in to us talking I said “where are you from?” And he said Tampa! I said Tampa, Florida??? (Like there is any other Tampa!?! HA HA! I was just in shock) and he said yes!!! They actually live maybe 20 minutes from us. Small world! But then again, connections here seem to happen that are meant to be. So we connected on Facebook so we can meet up some time at home!
So, I thought that was pretty much the end of our day. But as I went to get Caleb undressed for the bath I realized his bandage that covers his port was starting to pull up. It was a mess. The needle can not be exposed at all because of risk of infection, so, I called St. Jude and they had us come back over to get a new dressing. I am so thankful for their care and attention to detail. They took the old dressing off, flushed his port to make sure all was ok, and put a new dressing back on so he would be good to go for the morning.
We have an early start to our morning tomorrow (6:30am!!!) and no matter what happens it will be a long and emotional day. If all scans are clean then we will have his No More Chemo party immediately following the results. If they see something they don’t like, well… I don’t even know I can’t think about that. So, I am just going to try to relax and tell myself tomorrow will be a good day! Caleb is sleeping soundly and has no worry in the world. That’s all that matters. We will do all the worrying for him and I look forward to hopefully sharing the best news ever with you all tomorrow evening!!!