Hello everyone. I can’t tell you how many times I’ve sat down to write this post. This has to be one of the most difficult updates to share, since Josh was originally diagnosed with brain cancer in March of 2019. I’ve thought and thought how to phrase this, how to spin it, but every time I try it comes off all wrong. So, I’ve decided the best way is to just put it out there and get right to the point.
A couple of weeks ago, Josh had a telemed visit with his oncologist Dr. Braunreiter. At her request we had been discussing with Josh his wishes and all of his options going forward. One being taking on any treatment that might come out of the Match Trial and the other was foregoing any more treatments and entering in-home hospice care. We had several discussions with Josh and he always came to the same conclusion. It was time to give his body a rest. He was tired of all the doctor’s visits, the MRI’s and the medications that made him feel awful. He told Dr. Braunreiter this and she said it made sense and that she would respect and honor his decision, but she also had news. She then went on to tell us that a match had been found for a trial medicine to target one of the mutations in his tumors. The trial was in it’s early stages and would require taking oral chemo at home daily, monthly clinic visits, scheduled MRI’s every 2 months and routine blood work and then there was a long list of side effects to deal with and in the end no guarantee that the medicine would have any effect. She told us to take time and talk it over and get back with her with our thoughts. In the end, Josh stayed with his original decision and has chosen to give his body a rest, not to pursue the new trial and to stop treatment. It’s been a long and difficult 2 years for him and we will probably second guess this decision everyday, but we of course will honor his decision. Thinking on it now, it was questionable whether his body could have endured the side effects from a long chemo regimen as he has slid downhill quite rapidly.
So, Josh is now enrolled in an in home pediatric hospice care program out of Grand Rapids. His palliative Doctor from Devos, has made the trip to see him and each week a nurse from the program stops in to check on him, gathering vitals, discussing challenges and making sure he has the medication he needs and is comfortable.
Things have been pretty challenging for Josh lately. The tumors and the swelling around them are causing a varying degree of symptoms that are making daily life difficult for him.
He continues to have problems with swallowing and we have had to experiment with different foods, textures and thickness to figure out what he is able to eat safely. There have been times he thinks things are going okay only to find a few minutes latter that he is gagging up what he thought he safely swallowed. His saliva is also causing issues and making him sound congested and causing a lot of coughing. He has found some things easier to eat than others so he tends to focus more on eating those over and over.
He is also having a lot of vision issues that have developed in the past few weeks and continue to get worse. At an eye appointment recently they performed a visual field test which showed he has only the tiniest bit of central vision in his right eye, but it is too small to utilize. In his left eye he only has vision from the center of his eye out to the far left and that is dwindling. This means he has to turn his head almost all the way to the right to help him see out of the corner of his left eye. And to make matters worse some days even that vision gets fuzzy, but he has said that passes after awhile.
He is losing weight no matter how much he eats, which the hospice nurses tell us is expected. He is weak and needs help standing and transferring from his wheelchair to his favorite grey chair, bed, bathroom, etc. He is also experiencing some ringing in the ears and memory loss, particularly short term On a daily basis he will forget that he took his medication and ask for it repeatedly. The other day he forgot he had taken a shower just moments after he had gotten done with one. And those are just a couple of examples. Routine is key and we are working on ways to help him remember what is on the schedule and what he has completed from it.
When Josh was first diagnosed I used to tell people that we took things one moment at a time. That was the only way to deal with it. When he began to get stronger and gain some function back I switched to saying we took things one day at a time as it was usually good days and bad days. Now, I am back to moment by moment. Josh has good moments and bad moments and it goes back and forth throughout the day. Sometimes he is confused and unsure, and other times the sarcastic and silly side of him shines back through. Just need to remember to hold on tight to those good moments. I’ve added some photos of some of the most recent happy moments….special visits, hanging out watching movies with friends and spending time with family at the Karma Kat Cafe in Mt Pleasant, which is one of his favorite places and thanks to special donors we got to rent out the place for just us for a couple of hours. Now here’s hoping that each day brings at least one special moment.
Once again thanks so much for all of your love and support. We could not get through this without you. Please keep Josh and all of us in your thoughts and prayers. We definitely need them!