Zeke was born on January 14, 2020, in a fairly normal and beautiful birth. However, on his second day, he began experiencing difficulties, particularly with breathing, while still at the hospital. As a result, he was promptly taken to the NICU. An hour later, we received a call informing us that Zeke was facing significant problems. His platelet count was dangerously low, and his bloodwork was erratic. From there, Zeke was life-flighted to Duke University Hospital and admitted to the NICU, where he underwent numerous tests over the course of six weeks.
.
On February 18, 2020, we received the devastating news that Zeke had JMML, a rare form of leukemia found only in 1-2 in a million cases. The following day, he commenced intravenous chemotherapy. Fast forward four years, Zeke has undergone two new trial chemotherapies, approved within the past four years. When those treatments proved ineffective, he was switched to 6MP, a chemotherapy regimen with over 20 years of use.
.
In October of last year, we made the decision to discontinue his chemotherapy to observe his response, expecting his numbers to rise significantly. We had planned on his numbers to elevate and that was our sign to go into transplant. However, to our surprise, he maintained stable numbers within a safe range without the need for chemotherapy. Since October, he has been off chemotherapy, and we have been on a ‘watch and wait’ approach. While we are uncertain about what the future holds, we are grateful for this period of relative normalcy since Zeke’s birth and hopeful for the possibility of spontaneous remission, however slim it may be.
.
The doctors have informed us that Zeke has a one percent chance of experiencing spontaneous remission, and that is what we are fervently praying for.
.
The only other option for Zeke to be cured with a 50/50 chance is with a bone marrow transplant, so if any of his numbers elevate or change drastically, that is the direction we will be going in. For now, we are grateful that our little boy is fighting so hard on his own, and showing Cancer who’s boss.”
