100 days: it can seem like a lifetime (remember counting down to your 7th birthday?), or flash by before you fully enjoy it (summer vacation after junior year of college…please don’t end!).
For the recipient of a bone marrow transplant, the 100 days following the infusion of a donor’s cells are likely to be many of the longest and most anxiety-ridden of their life; during this period, the risk of dangerous side effects, infection, and graft-verus-host disease is highest. Reaching Day 100 is a milestone the importance of which can’t be overstated, and we were fortunate enough to talk with transplant recipient Aleyda and their mom, Khiarra, on that very day!
The date of a cancer patients’ bone marrow transplant often becomes known as their new birthday, re-birthday, or second birthday, because the procedure is often a last resort for survival when all other treatments have failed or are not expected to keep a patient in remission – it can be a true second chance at life. The stakes are high, and the road to the body’s full acceptance of another’s cells can be a very bumpy one. This was certainly true for Aleyda – a lover of 90s metal, painter, devoted big sibling, and college student on pause – from Day 1 of their transplant straight through to the present Day 100.
Aleyda’s case was complicated to begin with: their cancer is so rare that no doctor could provide a specific name, but instead had to generalize it as “T-Cell Acute Lymphoblastic Leukemia with a Philadelphia-like mutation.” It took six months to reach that diagnosis, during which Aleyda lived in constant and often extreme pain and with a variety of strange and lifestyle-altering symptoms. To top it all off, Aleyda’s symptoms began right around the time that COVID-19 became prevalent in the U.S., so it was nearly impossible to schedule appointments quickly with the specialists whose expertise they needed to figure out what was causing so much pain.
When Aleyda finally received some clarity around their diagnosis, treatment began at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, and quickly became as complicated as their unique diagnosis itself. The difficulties of Aleyda’s treatment are hard to understand without a medical degree and some post-doc study in oncology; hearing Aleyda and Khiarra talk through the timeline of the rounds of various chemotherapies, the clinical trials, the stroke and brain hemorrhage, and the kidney failure that Aleyda endured had us shaking our head and marveling over their current vitality and positivity.
Once Aleyda’s doctor determined that a bone marrow transplant would provide them with the best chance of long-term health, the process began to find a match. You didn’t think this would be easy, did you?! Despite a strong desire to help, none of Aleyda’s family members were a close enough match. After a few months of waiting and hoping, promoting donor drives, and traveling back and forth between Hopkins and home in Alexandria, VA, Aleyda finally received news that a donor had been found who was a 9/10 match – good enough to give it a go!
Some more good news came when Khiarra got word that Ulman House had a room available for her to stay in as Aleyda spent their first few weeks post-transplant – the riskiest ones – in the hospital, and that space would be reserved for them both through Day 100 and beyond if needed. From her first day staying at Ulman House, Khiarra appreciated it as a quiet place to make phone calls to keep friends and family up to date, to grab a quick but rejuvenating shower, or to exchange a bit of non-cancer related conversation with another friendly resident.
We know that sounds great, but don’t get too comfortable just yet. Aleyda hit another boulder in that bumpy road when they developed mucositis, an extreme swelling of tissue in the mouth that can be caused by chemo and which can – and did – impede a patient’s ability to eat. Doctors put in a Hickman line, a catheter placed into a vein in the chest, so Aleyda could receive nutrition until the mucositis cleared.
As you can imagine, Aleyda’s spirits and energy were frequently low, even after they were stable enough to be discharged from inpatient care and move into a suite at Ulman House. Thankfully, an unexpected new friend awaited them there.
Aleyda and Peter at the National Aquarium in Baltimore, MD.
Peter, a young adult cancer survivor, Ulman House Resident Assistant, soon-to-be medical student, and musician extraordinaire, helped brighten many of Aleyda’s days. Just a few years ahead of Aleyda in age, Peter understood many of the challenges Aleyda faced, both medical and psychosocial. He had also missed hanging out with friends during treatment, and became a confidante to Aleyda. He felt for Aleyda when their side effects kept them from singing, and he filled their room with music of all types, whether messing around on the ukelele or blasting Tool. He recalled how hard it was to muster up energy to do prescribed physical therapy, and gently pushed Aleyda to go out for a walk or to do some gardening out back. Peter also gave Aleyda a big dose of hope – showing them that there is life after cancer, and encouraging them to pursue a new goal of becoming a nurse.
On this milestone Day 100, Aleyda sounds tired, but hopeful. They are excited to get back to their cat and little sisters, to enroll in their first phlebotomy class online, and to hang out with friends – though they’ll definitely miss Peter! And in just a few weeks, a new 100 day countdown will begin…100 days until hearing the Deftones live in concert!
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