Born September 9, 2017, Christopher arrived to joyous parents, Mandi and Mark Milecki of Columbia, Maryland. When their second son, Max, was born February 7, 2019, Christopher was staying with Mandi’s parents in suburban Philadelphia. Within that first week, Christopher began to have persistent fevers. By February 13, Christopher had become lethargic, limping and not responding to antibiotics, so the family was advised to go immediately to the emergency room at Children’s Hospital of Philadelphia (CHOP). On the way to the ER with her father, Mandi knew something was not right.
Within hours of being admitted, the doctors at CHOP identified a tumor in his skull that required an immediate operation. The family was informed by neurosurgeon Philip B. Storm, M.D., that Christopher had Acute Megakaryoblastic Leukemia, a rare type of acute myeloid leukemia (AML) evolving from primitive megakaryoblasts. It accounts for 1.2% of newly diagnosed AML cases. Since the diagnosis, the family learned that Christopher’s 16th chromosome separated from itself. This accounts for 10% of leukemias. In Christopher’s case, he also has a ‘glis2 mutation,’ which is even rarer.
A transplant was necessary for Christopher’s survival and he was given only a 20% survival rate. That meant a donor needed to be found. Mandi and Mark remained positive and did not focus on anything but the hope they had in front of them. A donor was found, who then backed out. Another donor was found with a 10/10 match. The family was able to connect with Chris’s donor and hope to meet her someday soon.
Christopher’s first transplant took place on August 5, 2019. For the following seven months, he remained in the hospital with his mom by his side every day. Transplant patients are often told that if cancer does not return with 12 months of a transplant, the chance of recurrence drops significantly. Following months of bone marrow aspirations, and just shy of the 11-month mark, Christopher relapsed. Cancer cells were once again detected on July 4, 2020.
This would mean finding another transplant donor — and another transplant. But before he could have a transplant, Christopher needed to be in remission. Mandi asked Chris if he wanted to take the radioactive treatment at home or in the hospital. At the young age of 2 ½, he opted for home treatment. That meant that his parents provided the treatment that removed the cancer, but also nearly killed Christopher. Essentially, Chris endured full-body radiation. His little body swelled, gaining 18 lbs.
On November 5, 2020, Christopher endured his second transplant. After two weeks, Chris was gaining fluid, remained bloated, sedated and on dialysis. The chemotherapy he endured prior to the transplant damaged his lungs, liver and kidney. Amazingly, by the end of November, Chris began breathing on his own. He was discharged to the Oncology floor. Following a scare with delirium, which is common with patients that have been sedated for so long, Christopher was finally released in January 2021.
Throughout 2021 and into 2022, Christopher is fully aware of his diagnoses and his limitations. He visits the Clinic at CHOP every two weeks to have his blood checked and for a bone marrow aspiration. He loves spending time with his family and is eager to start school, when it is safe to do so.
November 5, 2021 marked 12 months post-transplant. The Mileckis are were eagerly hoping and praying that Chris would surpass the 12-month mark and be able to resume something routine in the months and years ahead, and he has. Little brother Max is just happy that Chris is home. Mandi and Mark have openly shared their journey and endured their own stressful, painful and unimaginable journeys.
Mandi credits the amazing doctors, nurses and teams at CHOP with providing the family with support and encouragement. She knows that Christopher has beaten extremely low odds of surviving, not one, but two bone marrow transplants. Mandi adds how pediatric cancer research continues to receive increasingly less funding, particularly compared with adult cancers. “Pediatric treatments have not improved or expanded. Kids facing cancer often are being treated with the same treatments from thirty years ago.”
Mandi noted that if someone is looking for ways to help, they can – invest in pediatric cancer research, sign-up to become a bone marrow donor: Join the ‘be the match’ registry or simply find ways to volunteer and support programs and hospitals that are making a difference in the advancement of treatments and cures for pediatric cancers.
We are thankful to the Mileckis for allowing Christopher serve as our 2022 CCF Ambassador for the Giant Food Pediatric Cancer campaign that began in August of 2022 and is running through September.
