We are at the beginning stages of PNOC022, and so far it is been a lesson is staying flexible. On September 23, we have a meeting with UCSF to discuss my daughter's eligibility for PNOC022, Cohort 5. They have a spot open for someone with an NF1 mutation, and wanted to make sure we were interested and ask some questions about her treatment so far before moving forward. Then, on September 30, we had the consent to treat meeting and signed all the documents. Now we are just waiting for them to sort out scheduling so we can go out there.
The trial will require us to travel to San Francisco for about a week the first time. It is looking like we will fly out on October 19. I'm not sure of the return date yet. UCSF wants to do another set of MRIs and other tests to establish a baseline for her. We had a last minute appointment at our home clinic to do blood work and an EKG for the trial this past Friday. I also got everyone flu shots in preparation for all the plane travel.
After that first week, we will have to go back out there once a month for a day or so each time. Like with her radiation treatments, my husband and I plan to alternate months, but my daughter has to go every time. I worry about the travel being too stressful for everyone. To make the choice more complicated, UCSF finally got in touch with Duke who said she would be eligible to get treatment there. The doctor at UCSF called me today to ask my thoughts, and I said that before we made any decision, we would have to actually talk to Duke. Regardless, we don't want to delay getting started on treatment. So, it is possible that we could transfer her care to Duke in the future.
Last week I really felt like UCSF was the right choice for us. They have been communicative and on top of planning everything. Duke denying us really made me feel like the universe was pushing us to UCSF for a variety of reasons. But, today, the cost and logistics of monthly travel is really setting in. I applied for an airline points credit card and TSA pre check today to help with costs and time. We got a referral for the UCSF Family House where we could stay for free, but it won't always be available. My MIL's husband is still recovering from cancer, and she still quarantines when she travels, so I'm not sure they'd want us popping in every month with our fresh airport germs. The government is shut down and who knows how long the TSA and FAA workers will be willing to go without pay. It's just exhausting to think about, and I feel sad about all of it.
My daughter got cast in the play at school again this year. They will have weekly rehearsals, and she will have to miss some. I'm really happy that she gets to be a part of it, but also sad that we have to think about travel and doctors appointments when making extracurricular commitments.
I'm also sad that we have to leave my younger daughter home. I'm sad that she is being left out and that we don't have more time for her. I'm said that we haven't been able to sign her up for gymnastics and dance and soccer like we did for my older daughter when she was this age. Her birthday is November 1, and I'm sad I can't devote the time, money, and energy to plan a party for her.
If we could transfer to Duke and we like them ok, it might be the better choice for quality of life. This weekend we made jellyfish lanterns for our town's lantern parade, happening October 25. I hope we will be back in time to go.
A Song to Get Out of the Monday Doldrums
Lindsey Stirling, "Monday Not Sick Anymore"
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