Hi Friends,
It’s been a handful of days since Elizabeth finished chemo and she’s already feeling much better. Though her appetite is lower, her energy is much higher and she’s been hanging out in the 13k family room, reading and texting more, and just generally feeling more active. The swollen arm is getting better slowly, which is great news because it means Elizabeth is more awake, clear-headed, and happy.
Flu season is over as of today, so we don’t have to wear gowns and masks in her room anymore! Unless you’re feeling sick or have any symptoms, in which case you do. But, the safest option is to wait until you’re well to visit anyway.
Thank you to everyone who’s been visiting and bringing things to brighten her day. It’s definitely really hard to be away from school. She is loving getting art, pictures, videos, and letters from all the kids in her life. ❤
The second half of this update will be a more specific timeline, but first I want to share a few resources that I’ve found helpful and that the doctors recommend.
- Over the course of treatment, Elizabeth has gotten a number blood and platelet transfusions. A few people have asked how/where that comes from and how to give back. These transfusions are supplied by The American Red Cross, which gets them from donations. If you are interested in learning more or donating, their website is here: http://www.redcross.org/
- Down the road, Elizabeth will be receiving a bone marrow transplant. Her donor will be found through the National Marrow Donor Program. Something I just learned is that donating bone marrow, in most cases, is very similar to donating blood – not a surgery. To learn more or potentially donate to another patient going through what Elizabeth is going through, https://bethematch.org/ is the link to the national registry. They can send you a cheek swab kit within two weeks. There are also local events where you can register on the spot!
- The internet is a vast sea of knowledge, but also a mixed bag when it comes to medical advice, statistics, and facts. Elizabeth’s doctors recommend cancer.gov and lls.org as resources for learning more and answering questions.
Going Forward:
In the next few days we’ll be learning more about the timeline for the rest of Elizabeth’s treatment. Here is the general overview of what we know now.
AML is generally treated in two or three phases. First is induction. Induction is one or more rounds of chemotherapy that aim to lower the cancers cells enough so that it goes into remission. The second phase of treatment is called consolidation. This is a round of chemotherapy that aims to get rid of any last cancer cells and prevent the leukemia from coming back. In some cases, the third phase is more chemotherapy and a bone marrow transplant.
Right now, Elizabeth has finished a round of induction. She did really well with the first round of chemotherapy (it’s never a picnic, but she really rolled with the punches amazingly), and this is a great indicator of how she’ll react to the next phases of treatment. In the coming week, she’ll have another bone marrow biopsy, which will help the doctors understand how her body reacted to the chemo and if she’s going into remission.
Once Elizabeth is in remission, she gets to come home for a week or two before receiving the next phase of chemotherapy – consolidation. Consolidation chemo is a 6 day treatment, most likely with cytarabine, one of the drugs she had during the first round of chemo.
Elizabeth has a type of AML that is most effectively treated with a bone marrow transplant. After consolidation chemotherapy, Elizabeth comes home for a whole month to recover. The doctors have already started looking for a bone marrow donor match using the National Bone Marrow Registry. Once they have one, she will return to the hospital for the pre-transplant chemo and the transplant itself. Receiving the transplant is generally just like getting a blood transfusion. Though the recovery from a transplant can take a little while, it is the best way to prevent the cancer from coming back.
Here are the links again from above:
The American Red Cross – for information on blood and platelet transfusions and donations: http://www.redcross.org/
Be The Match – for information on the National Bone Marrow registry, transplants, and donations: https://bethematch.org/
The Leukemia and Lymphoma Society – for more information on AML, treatment, and support: http://www.lls.org/
The National Cancer Institute – for research and resources: https://www.cancer.gov/
There’s a lot we’re still learning, but feel free to text/email me with any questions or thoughts on all of this information. I’ll try to snap some more pictures for the next email 🙂 I’m still happy to help coordinate, but since Elizabeth is feeling better, you can also text her directly to find a time to call/visit. Thank you again to everyone for sending Elizabeth so much love and support.
All my love,
Simone
Elizabeth's Updates 