Almost free

Tomorrow is discharge day! Jeff finally gets to leave the hospital and breathe fresh air again. He’s very excited to have some freedom, but he will be limited in what he can safely do while his body and immune system continue to recover from the last three-week onslaught. The best news today is that the headache that has been bothering him off and on for over a week now is gone today. He was also disconnected from the IV tower he has had to wheel around with him everywhere, which has been a good feeling.

He said it is hard to tell, but he thinks there might be a slight improvement in his vision. We do expect it to get better over the next couple of weeks based on what the eye doctor said. Yesterday the ENT doctor came and explained the different types of hearing loss to us and read the report of an audiology test they conducted for Jeff. They were able to clean out his ears and improve at least one aspect of his hearing, but the nerve-related hearing loss they can’t say for certain if or when it will return. They said they are hopeful it will, so we are keeping our fingers crossed both his vision and hearing continue to improve.

Jeff also had a repeat MRI last night due to the headache he’s had. The radiology report that came back this morning sounded very scary. I rushed back to the hospital at 7am because the report said his lesion was bleeding again and had grown significantly. However today after speaking with the neurology team, the neurosurgery team, and the radiation oncology team (so many doctors…) they said there is no immediate action needed since Jeff is feeling ok and responding perfectly to all the neurological tests they’ve done. Since this is a new therapy and there is no data (Jeff is literally the first person on this trial with active brain disease) they don’t know if the swelling and increased size is just the treatment working, or if it is true progression. They will repeat another MRI with better detail in a couple of days, and have started potentially planning for targeted radiation therapy as soon as next week.

We walked a solid 2 miles on our hamster wheel around the floor today and Jeff is going to enjoy his last room service meal and get the heck out of here tomorrow. On the whole he is feeling much better. We are staying hopeful and positive despite our scare this morning.

Love,

Arianna