It’s been more than a month since I’ve posted an update, it’s hard to believe that much time has passed. It’s been a busy month for our family. 

At the end of last month Andrew had an eye appointment that was really hard for me. The doctor basically told me that there isn’t anything he’ll be able to do for Andrew surgically or therapeutically. His eyes will continue to change as he continues to heal and that is where it will be. His oncologist reiterated that his eyes will continue to heal this week. However, it was disappointing and really frustrating to hear the doctor didn’t have great optimism in surgery being an option if they didn’t heal completely. I think we’ll ask for a second opinion down the road. 

Andrew has completely graduated from his feeding therapy. He no longer is using his g-tube and can take all his food & water by mouth. It’s pretty amazing to see him eat more and faster with each passing week. His oncologist has given her green light to get it out, we meet with the GI doctor in a few weeks and we will discuss more then. Fingers crossed he’s on board. 

The week after he stopped his feeding therapy we saw 4 new providers: a craniosacral therapist, a new speech therapist, a counselor and aqua therapy. 

The craniosacral therapy was similar to a therapy he received in Portland from a therapist we brought into the hospital. I think it does a lot to help his body reconnect. 

His new speech therapy has a goal to help with his breath and his voice tone. I can already see a huge improvement in both these areas and he’s only seen her twice, every other week. The oncologist told us this week that the more he uses his voice the faster his voice will return to normal. He took that as a sign to talk as much as possible, as if he needed a reason. It’s still a bit surreal that he couldn’t talk for 3 months, the kids that never stopped talked from the time he started. 

He was able to attend two aqua-therapies at the YMCA before they had a couple week break. He enjoyed it but was disappointed he couldn’t reach the bottom on his own, so he’s been working hard on his core strength to help with that. 😆 He’ll return to aqua-therapy in a few weeks and start a second at a different location later in June. We’ve heard that this type of therapy is really beneficial for his diagnosis so we’re pushing for it as much as possible. 

Andrew was able to enjoy seeing friends and doing math for the last month of school. Any day he didn’t have a doctor’s appointment first thing in the morning, we went into school in the morning. He was in the school 3-4 times a week for 5 weeks, up to 2 hours at a time. A few times he was able to meet 1 on 1 with one of the lab teachers so he could take part in a special whole school collaboration project. 

The school days were probably more emotionally hard on me than anything else. I’ve worried a lot this past month about Andrew’s future and how he might be able to play as a kid and live as an adult. I know some of that is a long ways off but it’s still a concern for me. The school days brought out many of my emotions around these concerns. 

His school has a recognition system where they give out “character cards” to students who show specific character traits in their actions. Many of the character cards are announced during a whole school assembly at the end of each week. These traits are things like Discipline, Responsibility, and Courage. Both kids received a character card during the last assembly of the year. Amelia for Responsibility when she helped clean something up that she didn’t have to without asking. Andrew for Courage in returning to school. He’s been so courageous and I’m grateful for educators for recognizing that and cheering him on. ❤️

Andrew continues to use a wheelchair to get around outside of the house, at appointments and such, but practices walking at home or scoots around on the floor. His mobility is improving every week! His balance is improving, even his scooting has gotten faster. He can now stand for 38 seconds! And he can walk with a walker in therapy with minimal assistance, mostly just for balance. It’s great to watch the improvements. His oncologist tells us with great certainty that she believes he will walk again and that is always great to hear but it’s even better to see the improvements. 

This past Monday Andrew had a follow up MRI. It went well and the results were good, thankfully. All the spots of interest from the tumor location were the same or smaller. The blood clot had gone down in size too, so he will continue with his blood thinners for another 3 months. His oncologist wants to stop the blood thinners after that and hopefully that will be all he needs since a definitive reason for the clot was never discovered. 

Whoo, that was a lot. If you got this far, thanks for hanging with us and all your encouragement over the last 5-ish months. All in all, this has been a good month with lots to be grateful for.