Dear family and friends,
This is Jess, Keira’s aunt, writing on behalf of Keira and her family. I’m married to Cherie’s brother, Jeff, and I couldn’t be prouder to be Keira, Kendall & Connor’s aunt.
We’ve started this Caring Bridge site to keep you posted over the next few months as Keira undergoes bone marrow transplant and recovery. We know that so many of you are sending your thoughts and prayers and well wishes and we thought a central location could be helpful to keep people updated. Keira has given her permission for us to share these details, and we will continue to be mindful of her privacy and preferences around sharing.
To provide a little background, when she was 12 years old, after fatigue and weakness and a few episodes of nearly passing out, Keira had labwork done that showed some abnormalities in her bloodwork. Her fantastic primary care doctor identified quickly that something was wrong and referred Keira to a hematologist for further workup and testing. After a bone marrow biopsy, Keira was diagnosed with Chronic Myeloid Leukemia (CML) on August 30, 2018.
CML is a form of leukemia that develops in the bone marrow. It is very rare in children and teenagers. Only about 150 children per year are diagnosed with CML in the United States. Since her diagnosis with CML, Keira has seen specialists at several medical institutions including Johns Hopkins, Children’s Hospital of Philadelphia, Oregon Health State University (with Dr Brian Druker, who is a world’s expert in treatment of CML), and Penn State in Hershey, PA. She has tried several different oral chemotherapy medications that treat CML. Unfortunately, all the medications have had side effects, including hair loss, fatigue, loss of appetite, nausea, and others. After trying several types of oral chemotherapy, all with side effects and more recently without good control of her CML, her medical team decided several months ago to recommend that she move forward with a bone marrow transplant.
A bone marrow transplant involves replacing Keira’s stem cells – a specific type of cell from which blood cells develop – with healthy stem cells from another person. The ideal donor is a sibling, who is likely to be the best possible match. Keira’s siblings were both tested and her sister, Kendall, is essentially a perfect match. In fact, she is such a good match that Keira’s doctors have said it is almost like having an identical twin. Keira will undergo bone marrow transplant with her sister Kendall as the donor on Monday, June 5th, at Penn State in Hershey, PA. (Fortunately this was scheduled for after the Taylor Swift concert!) Keira will be admitted on Tuesday, May 30th to prepare for the bone marrow transplant. She will receive high dose chemotherapy to wipe out her own bone marrow and to prepare her body to receive the transplant.
The doctors anticipate that Keira will be in the Oncology ICU at Penn State for at least 6 weeks. During this time, she will not be able to receive visitors other than her immediate family. If all goes according to plan, she will be discharged after 6 weeks to a medical apartment in Hershey, PA, where she will stay until mid-August to allow her to be close to the hospital for ongoing monitoring. We are hopeful that Keira will return to school in the second semester to complete her senior year of high school.
Through all of this, Keira has been living her life as a normal teenager (studying, spending time with friends, going to prom, cheerleading, doing college visits) while also managing medical appointments, medications, side effects, and worries about the future. We are hopeful that this bone marrow transplant will provide her with a brighter future without long term medications and daily side effects. This is her only chance for a cure.
Many of you have been so kind to ask how you can help. There are a few ways we have identified that we can help to support Keira and her family:
- Keira has created an Amazon wish list with things to help her while she is in the hospital. Here is the link to the wish list if you are interested in sending her love:
https://www.amazon.com/registries/gl/guest-view/SYIPW7CV8T7E- If you'd prefer, you are welcome to send an Amazon gift card for Amazon purchases or Audible books (Keira loves to read) to Cherie’s email address at highfillc@aol.com (mailto:highfillc@aol.com)
- Cherie and/or Jeff will be living with Keira in the hospital or staying at the Ronald McDonald House in Hershey for as long as needed. If you’d like to send a gift card for Starbucks, Panera, or Uber Eats, we can help to make sure that they also nourish themselves. (The whole putting on your own oxygen mask so you are able to help others...)
We know that you may be interested in contributing to a meal train or sending flowers or food. Due to the bone marrow transplant protocol to ensure that Keira is safe and at low risk of infection, she is not able to receive flowers or balloons or fish tanks (in case any of you were considering sending a fish tank!) and there are many food restrictions. So no meal train for now, but we will update you if that changes.
I will continue to provide updates over the coming months and will update you as there are additional opportunities to provide support.
Thanks to all of you for your thoughts and prayers and well wishes.
~Jess
