In March 2009 Jonathan got the news “You have Acute Myelogenous Leukemia…”

In March 2009, Jonathan was diagnosed with acute leukemia completely out of blue. None of us could fully wrap our heads around the events of those first few life altering weeks and months, but we knew we needed to share Jonathan’s story about his battle with AML and search for a bone marrow donor from the very beginning with everyone out there in order to save his life. And so Team Haupt was born.

On March 2nd, Jonathan and his wife, Courtney, were marveling at the snow storm that was blanketing DC. The very next day, Jonathan was admitted out of the blue to the ER because his white blood cell counts were dangerously low. So low, in fact, that he was immediately placed in an isolation room.

If it hadn’t been for the routine bloodwork Jonathan’s doctor had done the day before for what was suspected to be nothing more than a sinus infection, we have no idea when all of this would have come to light. The shocking diagnosis of acute myleogenous leukemia (AML) came on March 3rd, and by March 5th — Day 3 — Jonathan was being transferred to Johns Hopkins in Baltimore to begin immediate treatment for his cancer. Day 4 he had his first bone marrow biopsy and Day 5 he started chemotherapy.

In a matter of less than a week, Jonathan went from normal everyday life to cancer patient to chemo champion.

Jonathan was at Hopkins as an in-patient for a little over a month undergoing intense chemotherapy, called induction. The induction phase was intense and exhausting, but when it was completed the best news possible was announced — Jonathan was in remission. To make it a full and lasting remission, another round of chemo would be needed, a second phase of treatment called consolidation. Jonathan returned to Hopkins in May for the first of what was expected to be 4 rounds of high dose chemotherapy that would comprise his consolidation. Everything seemed to be progressing as planned.  But on day 100 Jonathan met with the doctors to learn the results of his most recent bone marrow biopsy. The news was not what we all had expected or had hoped for. Residual leukemia was present in his bone marrow that the high dose consolidation therapy was not able to get rid of. Jonathan’s type of AML was not responding to standard treatment as anticipated, and an immediate change in treatment was needed.

The Stem Cell Search

Jonathan’s team of doctors told him that informed him he was in critical need of a bone marrow transplant for a full and lasting remission. Chemotherapy alone was not enough to cure Jonathan’s leukemia. A stem cell transplant from a 100% perfectly matched bone marrow donor was the best chance to save his life. Yet despite his medical team’s regular searches of the entire network of national and international donor marrow registries over many months, no full match was ever found. Many people have asked about other experimental treatment options, such as a double cord blood transplant. That option was also explored, but no appropriate matches were found on the cord blood registries either.

The odds of finding a match are 1 in 30,000. Without a 100% bone marrow donor match for Jonathan, Team Haupt came together in the spring of 2009 with the urgent mission of encouraging new donors to join the national bone marrow registry in order to find Jonathan the that miraculous needle in the bone marrow haystack while he battled through another round of chemo to fight back the AML.

Throughout Summer 2009, Team Haupt partnered with DKMS Americas, Gift of Life and Be The Match to host bone marrow donor drives across the country to help Jonathan and other blood cancer patients like him.

In July and August 2009 alone, more than 30 Team Haupt drives were held coast to coast, adding thousands of people to the national registries. Hundreds more took part in our “virtual drive,” registering for a swab test kit online and participating by mail, and tens of thousands of dollars in donations were raised for our wonderful non-profit partners.

Despite the amazing turnout and support for our drives, a fully matched donor for Jonathan has not been found. His medical team searched for both bone marrow and cord blood donors. Without a perfect bone marrow match or a suitable cord blood donor, Jonathan’s next best option was an experimental bone marrow transplant procedure called a mini-haplo transplant, which uses bone marrow stem cells from a half-matched donor.

The Next Challenge: Post-Transplant Recovery

In December 2009, Jonathan successfully underwent a half-matched bone marrow transplant using stem cells from his amazing sister. For more on his amazing  Day 0 Stem Cell Birthday, check out our blog posts from the transplant. The months following the transplant involved intensive daily treatment and challenging side effects while we waited to see if the transplant would graft, or take. It’s still a very long road to recovery for Jonathan post-transplant, but he’s progressing on track, slowly but surely. On March 18, 2010 we celebrated his Day 100 post-transplant, such a great milestone. We are incredibly optimistic about Jonathan’s prognosis for a full cure and a return to a healthy, active life.

Team Haupt’s Marrow Match Movement Continues

At the same time, Team Haupt continues to search for Jonathan’s perfect match. We hope he will never need another bone marrow transplant but continue our efforts nonetheless to find that perfect life-saving match for Jonathan — and, more importantly, for the the thousands of blood cancer patients out there like him. Team Haupt will continue to host donor drives in their honor and raise awareness about the importance of bone marrow donation and the special issues and concerns facing young adults with cancer.

Jonathan remains positive and energized, and Team Haupt stands stronger than ever in our commitment to finding for a cure for leukemia and helping patients like Jonathan. We can’t thank all of you enough for your support and encouragement this past year. We hope you’ll keep it coming!

Become a Donor Today!

Please consider registering to become a donor today.  You may just be the perfect match for another blood cancer patient just like Jonathan fighting for their life with one shot for a cure.  A Simple Swab Can Truly Save A Life!