Time for another update! Josh has had a busy couple of weeks filled with chemo, therapy, blood work and doctor’s appointments, including two trips back to Grand Rapids and a visit with his Mary Free Bed Family.
To start off, Josh has completed Cycle #1 of his maintenance chemo and came through it with flying colors. He did get sick the first night and had a bit of a rough night of sleep, but after that it went fairly smoothly. He was pretty tired and that got more pronounced as the week went on but he pushed through and did’t even miss any of his therapy or his appointments. No problems with appetite either, which we are grateful for because that took a pretty pronounced dive when he was at Mary Free Bed and on chemo and radiation. Course being at home this time around may have helped too. He had blood work done this past Monday in Mt Pleasant to check his levels and thankfully they are all looking good! We’ll do another blood test this Monday to see where his levels are at 2 weeks after treatment and then if that’s good he’ll be back to visit the Oncology Clinic on the 23rd to begin the plan for Cycle #2.
Therapy has continued to go well. Josh usually goes two days a week, with 3 hours each day of therapy. One hour each of OT, PT and speech. He is continuing to work on getting movement back in his right arm, as well as working to strengthen his left. He’s been working on walking on varying terrain and continuing to work on his balance and stamina. He’s also practicing side stepping and walking backwards. In speech he has been working on his memory and recall, reading, and communication.
He is certainly making improvements. He can stand for much longer and is walking around the house by himself like a champ. He’s also walking more outside as well. Tonight Josh went on a walk with Jon and walked from the school to our house with only a couple of stops to rest. That’s huge! He’s also trying to do more things for himself and is perfecting walking with his cane while holding something in his hand as well — whether we want him to or not. 😉 He’s getting dressed, brushing his teeth, and other self care needs with little to no assistance and once he gets his brace and shoes on he doesn’t need to use the wheelchair in the house either.
As for his speech, the aphasia that developed after the tumor removal is still making communication a challenge. He often knows what he wants to say but sometimes it takes him a few minutes to recall the words to use. Tonight it took him several minutes to remember the word “catch” when he was trying to ask Elijah to play a game with him. Other times things come to him very quickly and he can put together a long sentence with ease, it really just depends. It’s a true test in patience, as we try not to answer for him. We spent so long when he couldn’t speak just after surgery trying to ask yes or no questions and guess what he was asking; so now it’s difficult sometimes to remember to let him take some time to make the connections to find the words he wants to use. Sometimes he still needs help, but many times given time he is successful. We also need to remember to simplify what we are saying and to speak in a slower cadence so he can understand what we are saying, but not too slow that we annoy him. It’s a delicate balance sometimes LOL!
These past couple of weeks have also been filled with appointments. He had a checkup with his dermatologist to look at a mole near his eyebrow that had changed during radiation. They ended up taking a piece of it for testing and we are waiting to hear back on the results. Hopefully it’s nothing to worry about and is just a side effect of the radiation treatment. We’ll keep you all posted when we know more.
Josh also had an appointment with his neurosurgeon who he hasn’t seen since his early days at Mary Free Bed. In fact the last time he saw Josh he was only speaking in whispers and was just beginning to walk. So you can imagine his delight to listen to him speaking clearly and showing off his walking ability as well as the movement he’s gotten back in his shoulder and arm. He is very pleased with how he’s progressing so far and said that this will in general be a two year recovery period. It’s unclear how much of the deficits he’s experiencing will continue to improve but we need to remember this is a long process so it’s hard to say what will or won’t happen. He’ll be having check in appointments with him a bit more often now, and they’ll be pairing them with his MRI checks that the oncologist schedules. The next one will be in late October.
Finally he had a check up with Dr. Voss at Mary Free Bed as well. Our appointment went very well and she too is happy to see the progress he is continuing to make since he left at the end of June. She’s considering whether or not to do another round of Botox for him, but has decided to hold off on that until after his chemo cycles are done. We’ll visit her again in January and see how things are then. And of course we couldn’t go to Mary Free Bed without visiting with our most favorite people on the Pediatric floor! Josh was so excited to see everyone and loved showing off how he was doing. Many commented how tall he looked now, as he is standing up much straighter and showing them his full 6 ft height. While we were there he even walked down to see his old room, though he couldn’t go in because another patient is calling it home for now. Josh is eager to stop by again when we have the chance on one of our many trips to Grand Rapids.
Next week we will having a meeting with the school to begin discussions on what our plan will be going forward on that front. I know Josh really wants to go back to school (not many times in his school career where that’s been the case. lol), but we’ll have to work together to figure out a plan that’s in his best interest while he recovers. We’ll keep you all posted.
Thanks so much again for all of the love and support! It means so much!