Wrapping Up Week 4 of Radiation
Tomorrow we wrap up week four of radiation — a short week thanks to the holiday. Week three went well. Eli has started catching on to the anesthesia, though — he can taste it now, and the feeling makes him uncomfortable. We are working on ways to keep him distracted while they put him under.
Eli's dressing on his PICC line started coming up, so home care had to come out Sunday morning to change it. That is always an experience when he is awake. Dressing changes are normally done during radiation while he is under anesthesia, so having to go through one fully awake was a bit traumatizing for him. The nurse who came out was very kind and patient with him, and we are extremely grateful for that.
Saturday brought some much needed normalcy. Eli got to spend time playing with his friends Oliver and CJ, and went out to eat with them along with his other friends Daisy and Ivy. Seeing our friends and living a somewhat normal life, even for an afternoon, meant more than we can say.
Saturday night gave us a scare of a different kind. When we went to give Eli his daily antibiotic through his PICC line, we discovered we had been given the wrong tubing. It was around 9 at night, and in a bit of a panic we started calling hospitals to see if anyone had the right kind. Dad ended up going to the local Hamilton firehouse, and they actually had a few extensions we were able to piece together to get Eli’s antibiotic running. The line was not as long as Eli is used to, but we made it work. Very fortunate, and a good reminder of how much this community shows up for us.
We also want to take a moment to thank everyone who has been buying things off Eli's Amazon Wish List. Every package in the mail is a little surprise for him, and the way he lights up makes our hearts so full. He sings "Happy Birthday" to himself every single time he opens something. Not knowing how many more birthdays we will get with him hits very hard, but watching him pretend every package is a birthday present brings us so much joy. Thank you for giving us those moments.
Something harder from this weekend — Eli has started losing his hair from the radiation. On Saturday, when Mom was giving him a bath, she noticed hair coming out on the sponge. On Sunday there was more, and we are finding hair in our bed now. It is a significant loss. Thankfully, Eli has not really noticed or been upset by it so far, but it has been taking a harder toll on us. Even though it is just hair, it makes everything feel more real. Eli is still running around acting like any other kid — you would not know what he is going through unless you knew. The visual is a stark reminder of the reality we are living in.
On a more personal note about us rather than Eli — I have noticed that social interactions have become more difficult for me(Dad). I think it is the stress, and feeling somehow isolated even while being surrounded by so much support. It is a hard thing to explain, but I catch myself zoning out in social situations, not really looking up, keeping my eyes down. It is not intentional. I think it is a self-defense mechanism to keep the emotions from building up and overflowing. We share that not for sympathy, but because we want to be honest about what this journey looks like for the whole family.
Now for some news we have been so excited to share — Eli's Make-A-Wish trip is officially confirmed! August 1st through 7th at Give Kids the World Village in Orlando, with passes to Disney World and Universal. We are so fortunate and so excited, and Eli cannot wait to go.
Thank you for every prayer and every kind word. They carry us through weeks like this one.
🩶🦁🧠 #RoaringForEli
