Apr 25, 2018 Latest post:
May 23, 2018
Thank you for visiting Jake's Caring Bridge site. We are using it to keep all those who love Jake up to date on his unexpected medical journey.
On December 12, 2017, Jake developed abdominal pain that was severe enough to send him to the ER. At the time, we all thought the worst case scenario would be a case of appendicitis that led to surgery and a quick recovery.
Unfortunately, Jake was not diagnosed with appendicitis. Over the coming weeks, blood tests done to follow up on a slightly low platelet count while in the ER ultimately led to the diagnosis of Severe Aplastic Anemia. The only curative treatment for this disease is a bone marrow transplant (BMT.) Since being diagnosed, Jake has been to many of the country's top hematologists (blood specialists.)
The road to a cure, began with having Justin, Jake's brother, tested for genetic compatibility. While Justin's bone marrow is a good match, it is not a PERFECT match. Until recently, the risks of BMT using partially matched donors was very high. Complications like rejection, Graft vs Host Disease and transplant failure made the prospect of using a partially matched sibling like Justin daunting at best.
But then entered a hero to nearly a thousand patients with bone marrow failure disorders.
We are so grateful to have found Dr. Robert Brodsky and his team at Johns Hopkins University. Dr. Brodsky is pioneering a bone marrow transplant program that is not only "gentler," but has jaw-dropping success rates using unrelated and half-matched donors. After a phone consultation and then a visit to Baltimore, Jake and his parents painstakingly analyzed all of the data. In the end, they chose to proceed with Dr. Brodsky's ground-breaking program.
While we all expect Jake to have a complete cure and recovery, the road to and after transplant will be difficult.
Before Justin's bone marrow can be given to his brother, Jake's own bone marrow must be completely destroyed in order to make room for Justin's healthy marrow cells to take over. This is will be one of the most difficult parts of the process. Jake will receive two different chemotherapeutic agents and one dose of total body radiation. Once this "conditioning" phase is complete, Jake will be ready to receive Justin's bone marrow. However, it may take a full month before we see signs that the transplant was successful.
Because of the virtual absence of an immune system, Jake and his family will need to remain in the Baltimore area for at least two months. The great news about Dr. Brodsky's approach is that Jake will spend most of his time in what is known as the IPOP (In Patient Out Patient Unit.) This means that while many of his days will be long, he will NOT have to spend the entire time in the hospital under isolation. He will be able to go "home" to their temporary apartment near the hospital. He will be able to have some visitors on select days and with approval from his care team. There are pretty significant restrictions as to what Jake can be exposed to in terms of food and plants so meals and flowers, etc, are not the best way to send love. Jake, Justin, Jessy, and John are so grateful for everyone who has already sent notes and cards. Please keep those coming. For now, that is the best way to show your support. Please also feel free to post comments of encouragement here.
We will post updates about Jake's progress with his permission here. Please check back frequently.