For the past six months, we’ve been managing life day by day and week by week. This last week we met with Susie’s local Neuro Oncologist and Hematologist. I’m happy to report Susie’s MRI scans look good. There is no sign of new growth or increased necrosis. In fact one of the areas that was showing necrosis, the Sylvian Fissure, is recovering. In layman’s terms, the doctors feel Susie is doing ‘very well’, is on the mend and is ready to move into maintenance/ monitor mode. Before each doctor visit, we sit down and make a list of questions for discussing with the doctors. Some of the items we discussed were:
- Pros and Cons of Accutane? Seems like a big question mark. Studies have been inconclusive, so usage is more theoretical. Also, the side effects are concerning, especially for Susie who seems to be a magnet.
- Tapering of drugs? Reducing Dexamethasone, so only drug by end of the month will be anti-seizure and the occasional Tylenol. No change for now in terms of anti-seizure dosage, we’ll discuss in two months.
- Double vision and updating glasses? Peak of radiation effects is between 3-18 months. Susie is past 3 month mark, so getting an updated prescription is appropriate.
- What if/ recurrence? Talked about tumor pathology and gene mutations (IDH1, TP53 and MET) and research being done in terms of virus piggybacking and drugs being developed to specifically target IDH1. Need to discuss more with MD Anderson about MET mutation, as it has been shown to be a hereditary oncogene in other cancers.
Susie’s blood counts are still below normal, but we anticipate they will recover with time. She goes in next week for a bone marrow biopsy to confirm that her megakaryocytes have increased and that her pistons are firing appropriately. So, her next Neuro Oncology appointment will be in the middle of June at MD Anderson.
So, all in all, we had a very good week. We had brunch on Sunday with Susie’s cousin Leslie and his wife Debbie. We had a mini-Pesach on Monday with Matzo Ball soup. On Wednesday, we had French Onion soup with Leora and Fred. Friday, Susie cooked her first full meal (trout, couscous, green beans and munchie crunchie veggies). We progress through the Easter weekend with Hasenpfeffer on Saturday at the Mahaffeys and a not-so Kosher Ham on Sunday with Leora and Fred. I think on Monday we’ll be ready to take a vacation from food.
We hope everyone is feeling a bit of spring in their steps. Happy holidays and love from us.
