Stephen and I were back in Rochester last week for more treatment and dr apts. I apologize for delayed update. When you have so many heavy apts back to back it sure exhausts you so I needed some time to not think about all the things before getting this write up out. 

Along with the stress from apts we also had lots of added stress flying there and back. Delays upon delays which caused us to miss flights both ways and required us to have overnight pit stops in Jacksonville and ATL. We had to change all our apts because of this and literally got off another late flight in Rochester and drove Stephen directly to his first apt with no time to spare. We hope this bad luck doesn’t continue as we will be making many flights to Rochester over the coming years. And we have learned we need a buffer day after flights and before apts in the future. 

Apts consisted of blood work, MRI, Neuro surgery, Neuro Oncologist and Palliative care. Overall all things are looking good. Although we weren’t expecting a bad report this early in the game it was a relief to know that the surgery and treatments are doing their job. No growth or changes other than post operative/post treatment changes. I added some MRI photos to kinda show the hole.  They took over 4,000 images and I didn’t have the patience to look thru them all. 

The bright side of all our apt changes from flight delays was that we were able to see our Neurosurgeon Dr. Burns for the follow up as opposed to the PA (which we have never meet before). Dr. Burns was the first MD at Mayo we spoke to after getting the MRI showing a tumor. He is not only an amazing surgeon but the most kind man. He gives you all the time in the world and is great at explaining things. He was happy with Stephens progress and the new MRI results. We talked a lot about his deficits. We knew there would be language deficits and vision deficits because of the area of the tumor. Although the average person won’t notice these deficits they are definitely there and frustrating for Stephen. He’s gotten really good at describing things when he can’t find the word but we are hoping this continues to get better. Dr thinks that over the next year things will improve significantly. We’re slowly going to get back into him driving at night. It’s much easier on the island because he knows the roads well but stateside night driving might take a while. 

Since Stephens tumor is so rare there isn’t much of a prognosis anyone can give us. He basically said that when they name the tumor with alphabet soup it just means they have no idea. Stephens tumor is an alphabet soup variety. He also clarified that because it was so rare the WHO (world health organization) couldn’t even classify/stage it. The only thing he could say with 100% certainty was that is wasn’t a grade 1 which he told us on the first video visit as well. It seems to fall between a 2-3 but who knows.  He agreed that it is likely that the tumor will come back (we knew this). This is due to the DNA make up that’s shows a more aggressive variety but again they can’t give us any idea of when. We asked about options for neurosurgery if/when it comes back but apparently there are a lot of factors that go into that decision so no need to worry about this now. Although we hope to never run into Dr Burns for neurosurgery again we are glad to know he’s there. 

We did end up seeing a new Neuro oncologist this time, again due to apt changes. We were a little unsure about this but ended up really enjoying this MD as well. We again talked about the deficits. His fatigue is a by product of the radiation and will hopefully get better over the coming months. The brain needs time to recover and we keep hitting it with more treatment so we have to be patient. Again, because the tumor is so rare there isn’t a clear cut treatment plan for it. Because of the more aggressive attributes of it we had to go ahead with the radiation and chemo for 6 wks but there isn’t a game plan after that. We have chosen to move forward with 6 months of chemo cycles which is a more typical treatment for more common grade 3 tumors. Since Stephen seemed to tolerate the chemo well before we feel like it gives us some reassurance that we did what we could to prevent this bitch from coming back. This is a much larger dose of oral chemo then before and he won’t be moved to the max dose until the second cycle which is dependent on him doing well this first round. The cycle is 28 days with 5 days of the oral chemo and 23 days off. We will do this for 6 cycles. He will need blood work at the end of the cycle to make sure all is good. He will also need follow-up MRI’s every 8 weeks for now. I believe they slowly space them out farther as we go but he will never go more than 1 year without an MRI.  I’m not sure what will be more stressful…getting MRI’s all the time or having them so spread. We will find out. When we went to Rochester we thought we had to be there for the first cycle of chemo but found out that wasn’t true.  So Stephen started the chemo thai last Sunday. It’s hitting a bit more hard then the past chemo but are hopeful he can complete the cycles without set backs. 

The Palliative care was the other team we saw and have actually been a huge blessing. We were a bit unsure of what to expect from them. I was thankful for my understanding of the service when we were told about us seeing them or I might have been freaked out. I told Stephen not to google what palliative means because it’s so much more than what they tell you on the internet. It’s not only about end of life care like hospice but more for chronic/long term or terminal Illness management.  We are going because of the long term/chronic nature of this illness. It’s a great support service to round out the great care we are getting at Mayo!  They are very in tune to all the deficits and life changes we are encountering and provide support in any way possible. 

Because of the fatigue, executive functioning and initiation difficulties treatment has caused they are going to start him on a small dose of ritalin which I guess is relatively common for the brain cancer population. I’m very hopeful this will be of great help. Stephen is the on-top-of-things, grounded one of the family and has until now always had a great memory and ability to keep us in check. I’m the loose canon, forgetful, hot mess one even when I’m on ritalin myslef🤦‍♀️😂. So once we got back to St Thomas and real life and these deficits started to show it has been a bit of a pressure cooker for us all. Two hot messes in a family is too many but I’m working to tighten my ship and appreciate all the support I’ve gotten from friends and family during this time. I’ve had plenty of experience dealing with mild brain injuries as an OT but man is it a different experience when it’s your real life. And I know it’s so hard for Stephen too. We like to laugh at this all when we can! We have had some good chuckles about what it feels like for him to have a brain like mine. He’s not a fan. But we are hopeful Neuro plasticity will do its job and he will feel more like his organized self in a year or so. 

The Palliative NP is also helping Stephen with sleep issues. He’s always been a horrible sleeper and the anxiety and stress of this all

Doesn’t help. He’s trying a new medication that may also help with nausea from the chemo. So far it’s making him more tired during the day as well but it’s a work in progress. Stephen isn’t a napper so he just powers thru the days. He even powered thru almost a week of taking Tylenol PM during the day. An oversight we both had when buying the new Tylenol not seeing the PM on the bottle. I’m not joking when I say we are both a hot mess right now!!!!😂😂😂

I think that does it for the highlights of our apts. we go back to Mayo the beginning of Nov for another MRI.  For now I guess we will take life 8 weeks at a time and hope to learn to live in this new normal. 

Thanks again for all the support, love, and care! 

Jenny and Stephen