This past Friday marked Josh’s 4th week since he arrived at Mary Free Bed. I cannot believe how fast the time has gone. It truly feels like we just got here. Although time wise it may seem we haven’t been here that long, Josh’s progress shows how far he’s come since we arrived. On his first day here he had to be transported in the ambulance on a stretcher, could only be move by a mechanical lift, couldn’t sit up on his own, and could barely move his right side and could not talk. Four weeks later he is able to get himself into a sitting position with little help, is walking with a cane, moving and stretching his arm, can move to his wheelchair by either slideboard or a standing pivot and is speaking again. He’s come so far, but still has a long way to go.
Currently in Physical Therapy, Josh is continuing to work on walking with a cane. He is walking further each day. His custom walking brace needed some repair, but it appears to be working as intended now. They have noted that when he’s walking he is turning his right foot/leg inward near the hip, so they have added in some stretching to do with his sleeping brace when he’s in bed that will hopefully help.
In Occupational Therapy, Josh is continuing to work on gaining as much independence as possible. He is getting better at getting dressed and taking care of his grooming with minimal help and is working on getting his arm moving again. In some ways his arm is proving to one of his biggest challenges. Odd considering originally he didn’t even know he had weakness in his arm until the doctor pointed it out to him.
In Speech Therapy, Josh is working on projecting his voice and gaining back his vocabulary. He still gets a bit lost when he is talking at times. The therapists feel that he can think faster than he can verbally speak. This usually means he’ll start to say a sentence, but part way through he’ll forget what he was trying to say. He can easily get frustrated when he can’t remember what he wanted. They have noted that his reading comprehension is pretty good overall, so they would like us to occasionally add in a reading component to our questions to help him work on that more.
Assistive Technology is still working on customizing an app for him on an iPad. They are putting common phrases for him together so they are easily accessible. This is really just a back up for him as they want him to use his voice more, but it has become very helpful when he wants to communicate with the nursing staff over the call light. He has chosen a Yoda like voice to speak for him which usually gets a good giggle out of the nurses, techs and therapists.
Overall Josh has had a pretty positive attitude, but things have started to weigh more on him as time goes by. During the weekdays, things are pretty good usually. His days are packed with therapy and he’s always doing his best. During his down time, mainly on the weekends, he can get a bit down. We are always trying to engage him in something to cheer him up, such as going for walks, going downstairs to the cafeteria to eat, playing on his phone and his video games. Sometimes he’s on board, but other times he just shuts down. So, Recreational therapy is going to try to put together an outside excursion for him in the next week or so to go to the movies to see Avengers: Endgame which he is very excited to see. Just having something to look forward outside of these walls that doesn’t involve doctor’s appointments will mean a lot to him I think. They have to check in with Josh’s team to see if they can make it work, so please keep your fingers crossed it gets approval.
One of the things Josh loves the most is getting visitors. Today his good friend Alex was able to stop by for a bit after school and it totally made Josh’s day. It was a short time together, but it can make all the difference in the world. While they were together they got to play Mario Cart on his switch and Alex brought the new adaptive piece for the Joycon controllers that he printed and now Josh is making some headway on games that require you to use both of the controllers. He is still figuring it out, but he was able to play without needing someone else to run the other controller for him which is huge! We are so grateful Alex was able to work this out for him.
Today, marks 6 weeks since Josh had his brain surgery to remove the tumor in his thalamus and tomorrow we will be meeting with the oncologist and begin getting everything in line for Josh to begin radiation and chemo treatments. Sometimes seeing how far he’s come makes it’s tough to remember that he has a much longer road ahead of him. We haven’t said a whole lot about what the plans are for his cancer treatment, but that’s only because it has changed so much in the past few weeks. Unfortunately Josh’s tumor just didn’t want to conform to really any normal classification which made planning the treatment difficult.
We’ve heard many possible diagnosis for the tumor. His surgeon originally thought it was an astrocytoma, based off how it looked when he removed it, but that turned out not to be the case. The original pathology showed that it was an Anaplastic Oliogogendroglioma Grade 3 (AOD) which is a slow growing tumor. This would have allowed them to begin chemo, but delay radiation treatment until after his therapies were complete. We started to put the beginning pieces into place, spoke about chemo options (PCV), etc. But that didn’t last long.
A follow up test raised questions about the pathology of the tumor, so they did one more test pulling the full genetic workup and found that it was not in fact AOD. It has similarities to it, but there are too many differences/abnormalities to ignore. It now has a more generic name, Malignant Glioma with Oliogodendro lineage. Which just basically means it’s a malignant tumor that appears to be similar to AOD. They can’t be for sure on the Grade, but they feel it is probably a 3 or a 4. All of this uncertainty, also meant they no longer knew how aggressive the cancer would be. Josh’s oncologist reached out to others in her field to get opinions on how to proceed with treatment as this could now be classified as ‘rare’ which just translates into ‘not many have seen it’. There was a lot of discussion, but the one thing that was agreed upon is they could no longer continue with the plan they had created previously.
So now without being safely sure whether they can wait to start radiation, Josh will begin with that and a use different type of chemo drug than originally planned at the same time. They will also now be using the chemo drug temozolomide, which they feel will not only work well, but should hopefully be well tolerated by Josh as well. They will start with a lower dose while he’s on radiation. Then once that concludes he will have a 4 week break and then begin a 6 month chemo block. This will have him taking a pill each day for the first 5 days and then allowing his body to recover after that. We aren’t sure yet how this will all affect the remaining inpatient rehab days he has at Mary Free Bed, at the moment that will depend on how he tolerates the treatment.
Tomorrow (Tuesday) we will have another appointment with the oncologist, as well as get some other tests they need done to prep for radiation, and he’ll have blood work and a baseline MRI done to use going forward. It’s going to be a very busy day. Hopefully we’ll learn that there have been no other changes to the treatment plan so we can go forward and get everything started. Progress is progress even if it’s sometimes too scary to consider.
Please keep praying for him and for the treatment!