Hi Friends,
It’s been a while since I sent an update, so I’ll try to give an overview of things that have happened or that you may have gotten wind of through Facebook or the GoFundMe or Elizabeth herself 🙂
For the last two months Elizabeth has gone through two rounds of consolidation chemotherapy. The first round was at Kaiser at the beginning of June. Consolidation went smoothly and she started on an at-home targeted chemo therapy called Rydapt. This is meant to target the specific markers of her form of AML.
As some of you may have heard, June ended up being a bit of a slog because of complications during her recovery from consolidation. She was in and out of the ER a couple times and was admitted for a longer stay as they treated her for infections that were causing some fevers. Though this wasn’t at all what Elizabeth was hoping for for the month, she was a trooper and they were able to locate the sources of infection to help treat her safely.
She got to be out and about for week or so before returning to OHSU for her second round of consolidation in early July. During recovery from that she was back on the Rydapt, which caused her counts to stay low longer than they might if she were recovering from the consolidation on its own. After a couple weeks they let her stop the Rydapt because the side effects were too overwhelming. Now her counts are recovering slowly but smoothly and she’s physically feeling much better. She’s busy most days of the week with appointments and labs, but she’s still getting to enjoy being home and Portland summer.
The biggest and most exciting piece of news is that they found an amazing donor match for Elizabeth!!!! She is scheduled to go in to the hospital around the 14th to begin the pre-transplant chemo. Transplant starts around the 22nd of August. They estimate that she’ll be in the hospital anywhere from 2-4 weeks. She then gets to come home for the rest of her recovery. The first three months at home will still be an intensive period of recuperation and care. The total recovery until she can work again will be around a year from transplant. Though the timeline feels daunting, we are so incredibly excited that a donor is all set to give and that she’s starting this process!
Supporting Elizabeth during transplant will be a group effort and will take any number of forms. Most importantly, sending Elizabeth love makes a world of difference. Every card, drawing, video and picture from the kids in her life is precious and uplifting. We’ll know more about what she’ll need once she’s in the hospital and I’ll try to send out a more detailed email on help and care then.
In other news: I’m hopeful that the GoFundMe is finally working again (if you happen to hear or experience that it’s not, please let me know directly because otherwise I have no idea). There’s a more detailed post about this on the GoFundMe, but at the end of June Eric Kearney and I established the Elizabeth Maxon Third Party Special Needs Trust. This is a Trust for Elizabeth’s sole benefit and all of the donations that people have given through GoFundMe are deposited there. Let me know if you have any questions about GoFundMe or giving directly to the trust. Eric has also offered his help in answering questions. Thank you all again for your support of Elizabeth.
I have also added more days to the Meal Train calendar that Jordan set up for the time that Elizabeth will be in the hospital. She may not be able to have food from restaurants during transplant, but home cooked meals and groceries are always very welcome to spice up the hospital menu.
All in all Elizabeth is doing really well. The lead up to the transplant will be fairly intense but she’s going in with amazing strength and energy.
All my love,
Simone
Elizabeth's Updates 