A COTA Family is Celebrating Big in September — the NFL’s Opening Day and World Marrow Day: Please Register to be a Life-Saving Tissue Donor
Bone Marrow Recipient
September 1, 2021 — September is a big month for the Jackson/Buckhanan family of Phoenix, Arizona. The third Saturday of September (September 18th this year) is celebrated globally as World Marrow Donor Day.
It is an observance of gratitude to Tissue Donors Worldwide — unrelated and related — and a day to learn more about the impact of Tissue Transplantation on patients’ lives. It is also when the National Football League (NFL) officially kicks off its season on September 9th.
While these two important September events may seem disparate, they are indeed related when talking about Sibling Team Autumn and Austin Jackson. Their mother, Lavonna Buckhanan, recently reflected on the family’s incredible transplant journey to date:
My baby girl, Autumn, was born two weeks early due to Utero Stress. The night she was born was the first time she had a Blood Transfusion. Two weeks after that she needed another one.
Her doctors were definitely puzzled until a Bone Marrow Biopsy was performed. At eight weeks old, my baby girl was diagnosed with Diamond Blackfan Anemia.
(Diamond Blackfan Anemia or DBA is a rare Genetic Disorder that keeps Bone Marrow from producing Red Blood Cells. This failure causes DBA patients to be severely Anemic. Managing DBA, which affects fewer than 3,000 people worldwide, means years of endless pills, constant prodding with needles and Blood Transfusions.)
Autumn’s first 13 years of life were our ‘lucky’ years. She was responsive to Steroid Medication that boosted her Bone Marrow activity. She had a few other conditions peripherally related to DBA, but for the most part she presented to the world as a normal and healthy kid. She was truly a blessing to all.
When Autumn turned 13, everything changed. The Medication no longer boosted activity in her Bone Marrow and Blood Transfusions became necessary to keep her alive.
The Transfusions were initially spaced six weeks apart but that simply was not adequate to keep her from experiencing the drain of Anemia on her body. Eventually her Blood Transfusions settled into a three-week frequency, which presented another Medical Challenge for our teenager.
The Transfusion frequency meant her body had to deal with excess Iron. Her Medical Team told us human bodies are simply not designed to excrete a ton of Iron on their own so the body stores the excess Iron in Vital Organs — typically the Heart or the Liver. In Autumn’s case, it was her Liver.
Iron overload is what brought us to consider a Transplant. She had begun to show Lesions on her Liver, and over time continued Transfusions would lead to Liver Failure. A Liver Transplant may have been an option, but it was also possible her Blood Transfusions could negatively impact any Liver donated to her.
When Autumn turned 18, she was still relatively healthy enough to receive a Bone Marrow Transplant. Our family began talking to the team at Phoenix Children’s Hospital about her Transplant options.
Learning the facts about what a Bone Marrow Transplant would entail was emotionally draining for all of us. The various things that could go wrong during and after the Bone Marrow Transplant were numerous and daunting.
Learning that she would also have to undergo Chemotherapy generated even more fear in my heart. In most cases, we were told, the most challenging and unnerving part of the process was finding a solid Bone Marrow Donor Match.
Many studies show this is very much necessary for a successful, long-term outcome. We were also told there were many things that could go wrong during, and after, a Bone Marrow Transplant.
It was all more than my mother heart could bear to hear.
We quickly learned that a ‘sibling match’ is the first potential donor that is checked once the National Tissue Registry is updated. Autumn has one full sibling, her big brother Austin — but there was only a 25% chance he would be a match. We learned in October 2017 he was a 100% match!
Bone marrow Transplants typically take place in the Summer months to avoid the height of the Flu Season. But Autumn was adamant she did not want to have the Transplant and miss her Senior year of High School recovering and staying secluded while she was Immune-suppressed.
Luckily her team of doctors agreed to support her wish as long as her Liver and other counts remained steady. They prescribed Medications that would lower her Iron levels during this time in preparation for her Bone Marrow Transplant. We all agreed and were on board to have the Transplant after she graduated from high school during the Summer of 2019.
Lavonna and her husband, Steven, decided to spend the time up until the Transplant reducing household expenditures and adjusting the family’s lifestyle in preparation for the many financial unknowns that accompany a life-saving Transplant.
A Transplant Social Worker at Phoenix Children’s Hospital also suggested they consider reaching out to the Children’s Organ Transplant Association (COTA) to learn more about how they might be able to help ease some of the family’s stress.
Lavonna called COTA in June 2019 to learn more. Just a few days later their agreement arrived at COTA’s headquarters and the Jackson/Buckhanan family officially became part of the COTA Family.
The Children’s Organ Transplant Association (COTA) uniquely understands that parents who care for a child or young adult before, during and after a Life-saving Transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a team of trained volunteers.
COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime.
Just a few weeks later a COTA fundraising specialist trained the family’s volunteers via telephone so fundraising for Transplant-related expenses could begin immediately.
The COTA staff member shared information about COTA’s Fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided.
COTA in honor of Team Autumn was launched, and the website was immediately available for online donations for Transplant-related expenses.
Lavonna decided she would stop working that Summer so she could be available to take Autumn to the 20+ required Pre-transplant Medical Appointments.
Just one week after Lavonna started her unpaid medical leave to prepare for Autumn’s Bone Marrow Transplant, her husband’s employer underwent unexpected layoffs and according to Lavonna, “Steven did not make the cut.”
The family had already intentionally trimmed their budget as much as possible. They decided to rely on their Savings and help from others because there was simply no other way.
Then Lavonna remembered, “Because we were in the Transplant process, COTA could assist with travel, meals and other transplant-related expenses.” She described it as a moment of grace.
Lavonna also said none of this would have been possible without the Marrero family. Tiffanie Marrero served as the COTA team’s Community Coordinator and lead the fundraising effort.
As Lavonna describes, “Tiffanie and her husband went above and beyond as our lead COTA volunteers. We are forever grateful for their unending creativity and their never-say-never attitude and approach to fundraising.
“COTA literally made living the weeks up to and through the Transplant possible. COTA truly alleviated a huge financial burden until my husband found his next job,” Lavonna said.
“Because of COTA’s guidance and support, Autumn’s caretakers were less stressed and better able to care for her during and after her long Transplant journey. There are no adequate words to describe how huge COTA’s support was for our family. It gave us hope at a time when hope was desperately needed.”
Autumn’s Bone Marrow Transplant was scheduled for July 10, 2019. Big brother, Austin, had been continuing his Collegiate studies at the University of Southern California (USC) and continuing his nearly year-round football conditioning and training as an up-and-coming ‘one to watch’ in the sport.
Austin never forgot reading one of his sister’s blogs from a year or so before the Transplant when she called him “my only hope.” After that, he never hesitated. As Autumn’s donor, Austin underwent a procedure to have Bone Marrow extracted from three points in his lower back. And less than a month after that painful procedure, Austin took the field for USC’s fall camp practice and started getting back into shape to play left tackle when his junior year season kicked off.
Leading up to July 10th, Autumn had been an inpatient for 10 days and had received two types of Chemotherapy. Autumn received Austin’s bone marrow the next day. The next step was to wait.
It was unnerving for Lavonna, but they simply had to wait for Engraftment. It typically takes two to four weeks after the Bone Marrow is transplanted for Engraftment to occur. The first sign of Engraftment is a gradual rise in White Blood Cell Count that typically occurs two weeks post transplant.
Lavonna remembers the joy exploding inside her heart when she was told Autumn was Engrafted in just 10 days. The family had also anticipated a six-week hospital stay; however, Autumn was released after 21 days Inpatient.
She had a very steady and progressive recovery period that was even better than textbook. Although Lavonna does remember several return trips to Phoenix Children’s, they were always for adjustments to Autumn’s Medications.
Now, fully post Transplant, it is obvious to all who knew her well that Autumn is back. She is back to the hopeful, exuberant and joyful person she was prior to her health taking a daunting turn. Autumn is now starting to dream about a future that hopefully includes fashion, photography, makeup and music. Ultimately she would like to one day be a Certified Esthetician. The good news? Autumn is actually able to pursue a career and follow her dreams … thanks to her brother’s life-saving gift.
Additionally, the family even has more good news to celebrate. After donating his Bone Marrow, Austin had an incredibly successful USC football season and declared for the NFL draft.
In April 2020, Austin was the No. 18 Overall Pick by the Miami Dolphins as a Left Tackle. Hoping that everything stays on track and all stay healthy, the entire family will likely be in the stands when the NFL 2021 Season kicks off this month on September 9th.
The Jackson/Buckhanan Family is full of hope, full of joy and full of gratitude. According to Lavonna, “COTA is a big reason why hope has been restored to our family.
Literally overnight we became a single income household suffering under the weight of very big medical bills. The costs associated with Autumn’s Transplant were astronomical. And they did not stop once the Transplant was over.
Autumn will need to be Medically monitored for life. COTA has been right beside us on this journey through the most challenging and critical part, and we are forever grateful COTA will continue to be with Autumn … for a lifetime.”
Lavonna added, “COTA has been such a blessing for our family in many ways and we are so very thankful for all they do.”
For more information about the Children’s Organ Transplant Association (COTA), or to find a COTA family in your area, please email kim@cota.org.
Thank you,
Glenda, Charlie and David Cates
