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Standard Care & New Symptoms

Updated: Sep 23, 2024

A lot has happened since I last posted. Things change every day with my dad and when I am able to be with him I don't want to be writing blog posts. When I am unable to be with him I am constantly researching, talking to people, and trying to find the right answers and connections, so that we can quickly make the very best choice for my dad.

Sadly, on our trip to CA every place we visited told us we have to do the Standard Care (chemo + radiation) and then have the cancer begin growing again to be eligible for any trials in the future. They also said it was unlikely he would even qualify for those due to the leptomeningeal spread. They all urged us to begin full brain and spine radiation at Mayo immediately. They said that tiny tumors are beginning to form through my dad's brain and spine and even a tiny amount of growth from these in the spine can be major symptoms for my dad. Since Mayo has proton radiation we are going to begin this radiation on Thursday at their facility. There are only a few proton radiation machines in the country and Mayo has one! This radiation is known to have far less symptoms than Photon radiation and won't go past the spine to his organs like the Photon does. He will be doing chemo along with this daily radiation.

Over the weekend my dad has gotten worse. It is so painful waiting for the care to start. We requested Friday to start on Monday, but they said Thursday was the earliest they could start. Each day we wait is scarier and scarier.

Over the past few days he began to have double vision in his left eye, along with the worsening vision loss. He requested to start wearing an eye patch to cover this eye and we are hoping this will start to help with the migraines he is getting. He is now saying that even his right eye isn't processing sight right. He says he can tell it's his brain not processing it right and that it is hard for him to explain.

He is having increasing confusion and it has become very hard for him to walk, even assisted by us, starting yesterday. We got him a wheelchair and are working on buying him a nice walker for when he feels like trying to safely walk (still with our help). Walking brings him so much joy. We are devastated about this new symptom.

The trouble swallowing is still a big issue, as well. We have been trying to get him into a swallow study for a week now and they say they sent the order to TMC and to call and schedule, but no one calls us back. We decided to just go to ER there yesterday to say he needs one done and they said he could do it. We waited hours and after calling him fully back from the scan they said never mind they couldn't do it anymore. It was such a waste of time and so much energy wasted for dad. After that is when he started to not be able to walk well.

Another new thing is he seems unable to regulate temperature. He will be absolutely freezing and unable to get warm out of no where, etc.

The other night he suddenly seemed unable to talk and started just nodding, shaking his head, and holding his throat in pain. He did this the rest of the night. We were so scared this symptom would stay, but it seems to have left and he can talk again. PHEW. This cancer is so up and down with different symptoms, we never know what to expect at a given moment.

In his confused state he remains so brave and sweet and caring. He blows us all away being such a great example of strength and we hope we are able to keep making him feel as comfy, loved, and happy as we possibly can.

My Uncle Robert came to visit over the weekend and we all took this photo right before he left to go back home. We loved having him.

1 Comment


Your Dad and all of you have my continued love and prayers! You are all warriors and I’m grateful you have such a big support system!! Blessings, Jeanette Summers

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