Bloomington, Indiana — November 2, 2016 — November is recognized as National Marrow Awareness Month in order to raise awareness of the nearly 20,000 U.S. patients who are waiting for a life-saving bone marrow transplant or cord blood transplant. For one Arizona COTA family, this month of gratitude will include an expanded Thanksgiving table thanks to a non-related bone marrow donor who gave their daughter a second chance at life. This same family’s Thanksgiving will include prayers that a donor can now be found for their little boy as well.
Aaron and Stacey Weimer were thrilled to discover they were pregnant with their first child. When Madalyn arrived on August 24, 2010, they were overjoyed. Their first months of new parenting with Madalyn were fairly text book. She was a healthy and happy baby. During a normal well-baby check, Aaron and Stacey told their doctor about little spots that seemed to come and go on Madalyn’s belly and back. The pediatrician ordered some blood work, which came back a ‘little off.’ The Weimers were referred to a hematologist just to be safe. The hematologist ordered blood work to be done, and again, it came back ‘not quite right.’ At that point, the hematologist recommended a bone marrow aspiration as a way to rule everything out. Both Aaron and Stacey were confident everything would be OK because Madalyn had never been sick and she really showed no sign of illness except for the red spots.
Stacey remembers that day in April 2012, “We got a call a week after the test saying they had found something in the cytogenetics and wanted us to come in the next morning to discuss it. We worried all night. The next morning we were told Maddie had a form of blood cancer called MDS, and her only chance was a life-saving bone marrow transplant. At that same visit we were told our insurance did not cover the transplant at our hospital in Arizona and we would most likely have to travel out of state.”
Myelodyspastic syndrome, or MDS, is a very rare blood disorder that can lead to leukemia. In Madalyn’s case, there were no siblings who might be a bone marrow match and none of her relatives were a match. AJ and Stacey were stunned and hopeless. They would now be racing against the clock to make sure their seemingly healthy 18-month-old daughter would live to celebrate her second, third and subsequent birthdays. All indications pointed to the fact that doing so would come at huge expense.
After much research, the family left Arizona to visit the Seattle Cancer Center Care Alliance, which partners with the Seattle Children’s Hospital to perform pediatric bone marrow transplants. During their stay, they learned much about the lengthy transplant journey Maddie would be facing once a donor was found. It was also during this stay when Stacey and Aaron were encouraged to reach out to the Children’s Organ Transplant Association (COTA) regarding fundraising to help with transplant-related expenses. The Weimers decided to become part of the COTA family in late May 2012.
COTA uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. A COTA fundraising specialist traveled to their hometown of Surprise, Arizona, on June 8th to conduct an on-site training with a group of volunteers. The COTA in honor of Madalyn W team of volunteers quickly started organizing fundraisers for transplant-related expenses. The Weimers returned home to Arizona to wait for the news that a bone marrow donor had been found.
On July 20, 2012, Stacey and Aaron received the life-saving news in the form of a letter from Seattle. A perfect, 10/10 match had been found. The Weimers would now wait to hear details regarding the next steps in terms of harvesting the donor’s bone marrow and relocating to Seattle for Madalyn’s transplant. Madalyn’s donor turned out to be a young adult who in 2011volunteered to be bone marrow donor at a health fair held on her Indiana college campus. This young woman agreed to have her bone marrow harvested. By the end of August the family had temporarily relocated to Seattle to prepare and wait for the life-saving donor bone marrow.
“COTA was a huge help and support system for us. From the first day we made contact, the COTA team was there for us. They were very caring and supportive, but also a huge help in providing guidance and knowledge about fundraising. COTA made it easy for us to focus on taking care of our child throughout the transplant process instead of worrying about how we were going to pay large medical bills and our day-to-day needs like food and gas. COTA gave us so much hope,” said Stacey and Aaron.
After having a double Hickman line surgically placed in early October, Madalyn started her first of eight vigorous days of chemotherapy on October 6, 2012. Chemotherapy is necessary to make sure the bone marrow recipient’s immune system is suppressed enough to help ensure the recipient will not reject the donor’s marrow. Madalyn’s bone marrow transplant started on October 15th and ended on October 16th. She did experience graft versus host disease (GVHD) very early post-transplant and developed a rash that looked like a third degree burn and extended from her head to her toes. During this tense time, her fevers spiked over 105 degrees. Thankfully, Madalyn’s transplant team got the GVHD under control with constant monitoring and various medications.
Madalyn was released on November 13, 2012, and went to the local Ronald McDonald House bone marrow transplant apartments to live with her parents. The family was able to leave Seattle and fly back home to Arizona on January 31, 2013, to restart their lives. Madalyn continued her post-transplant care at Phoenix Children’s Hospital. She finally had the last line surgically removed on August 14, 2013, right before her third birthday.
“If it was not for COTA, I don’t know how we would have survived all of this financially. COTA continually allowed us to focus on our daughter and not stress about finances including how to pay for the day-to-day needs associated with our lengthy relocation to Seattle. COTA was, and is, a gift,” Stacey said.
As part of the family’s healing process, they reached out to thank Madalyn’s donor. In June 2014, the young woman flew to Arizona to meet Madalyn face-to-face at Phoenix Children’s Hospital. It was a moment full of tears, joy and gratitude for the Weimers. When asked why a college student would add her marrow to the national donor registry system, Madalyn’s donor said, “Taking my marrow was just a minor inconvenience. It didn’t cost me anything and there were no long-term complications. And it gives you the life-long feeling that you have saved someone’s life. Few of us can say that.”
Today, Madalyn is in full remission. She is a little girl who loves all things princess and all things pink, polished and full of glitter. Post-transplant and back home with their ‘girly girl,’ Stacey and Aaron really wanted to have another child, but they were worried. Madalyn’s doctors assured them her disorder was genetic in origin and the chromosome mutation was not hereditary. Madalyn added the title of Big Sister in early May 2015 when her little brother, Aiden, was born.
However, Stacey and Aaron learned around Aiden’s first birthday that he indeed shares Madalyn’s diagnosis and also needs a life-saving bone marrow transplant. This family is now undergoing a multitude of tests, treatments and very soon donor searches so Aiden can fight his deadly diagnosis … just like they did with Madalyn. More travel to Seattle from their Arizona home and more extended stays in Seattle; however, this time one parent will likely be in Arizona with Madalyn while the other is in Seattle with Aiden.
Aiden is now a COTA kid, too. It is likely the COTA team of volunteers who successfully raised funds in honor of Madalyn will again need to raise additional funds for transplant-related expenses.
In just a few weeks, the Weimer family’s Thanksgiving table will have a place of honor for Madalyn’s bone marrow donor to whom they are forever grateful … and an empty seat for the bone marrow donor for whom they are waiting and praying.
For more information about the Children’s Organ Transplant Association (COTA) or to find a COTA family in your area, please email gro.a1519203171toc@m1519203171ik1519203171.