November is National Marrow Awareness Month:
A COTA Family is Grateful for Their Three Sons and Two Bone Marrow Transplants
November 1, 2022 — November is an important month for the Kachur family of Findlay, Ohio, because it is National Marrow Awareness Month. It is a time to acknowledge those who have donated bone marrow and stem cells in order to save others’ lives. In the Kachur family’s case, their son, Caleb, is alive and doing great this year thanks to their son, Colten, who donated life-saving bone marrow and stem cells to his little brother. Their youngest son, Crosby, is now recovering from his bone marrow transplant earlier this year in May — thanks to a generous young donor from Poland.
November is also a month focused on gratitude, which is something that overflows from this family’s hearts.
In January 2017, Kristin and Kevin Kachur were taken by surprise when their six-month-old son, Caleb, had to be life-flighted to Nationwide Children’s Hospital in Columbus, Ohio, after a lengthy struggle with what pediatricians suspected was a ‘viral’ illness. During his inpatient stay at Nationwide Children’s, the medical team discovered Baby Caleb had pneumonia as well as several other viruses. They also told Kristin and Kevin that Caleb’s white blood cell count was dangerously low. Five unexpected inpatient hospitalizations followed.
It was during Caleb’s fifth hospitalization that new tests and specifically a bone marrow biopsy showed he was suffering with a rare blood condition. In July 2017, around the time of his first birthday, genetic testing revealed Caleb’s official diagnosis — Immunodeficiency Centrometric Instability Facial Anomalies (ICF) Syndrome. Kristin and Kevin were surprised to hear the diagnosis and started researching this disease and its ramifications. ICF is very rare and is typically characterized by immune system malfunction, constant respiratory infections, learning/mental disabilities, developmental delays and gastrointestinal issues. According to the Kachurs, less than 100 cases have been reported worldwide with no known cases in the United States (at the time) … until Caleb was identified as the first.
“Our oldest son, Colten, was born free of any health concerns and it was not until Caleb was born that we learned about ICF,” Kristin said. “One day we have a healthy second baby and the next we are thrust into a six-month diagnostic period, ultimately learning that my husband and I passed on this rare genetic immune deficiency.” The only known potential treatment for ICF Syndrome is a bone marrow transplant.
The family received some very good news in August 2017 when Caleb’s brother was identified as a perfect, 10/10 match for Caleb’s transplant. Kristin and Kevin had come to rely on Nationwide Children’s ‘connecting families’ program for help, advice and comfort. Once it was determined Caleb needed a bone marrow transplant, their assigned Nationwide support family referred them to the Children’s Organ Transplant Association (COTA) because COTA had been a lifeline throughout that family’s transplant journey with their son.
On December 13, 2017, Kristin called COTA to learn more about the possibility of support and assistance desperately needed by this family who was facing so many unknowns. Two days later their agreement arrived at COTA’s Indiana headquarters, and the Kachur 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.
In late January 2018, a COTA fundraising specialist travelled to the family’s Ohio hometown to train a group of volunteers 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 Caleb K was launched, and the website was immediately available for online donations for transplant-related expenses.
According to Kristin, “We had never heard of COTA prior to the conversation with our Nationwide support family. But after connecting with COTA we were amazed by their kind and encouraging staff, their genuine concern for our family and the unwavering dedication to the organization’s mission to support transplant families. COTA staff members spent hours on the phone with my husband, with me and with our volunteers answering questions, helping us create a COTA fundraising website and brainstorming ways we could connect with, and thank, our incredible support system.”
In May 2018, the Kachurs temporarily relocated to Columbus, Ohio, into transplant housing. On May 9th, Caleb was admitted for transplant and the necessary six weeks of chemotherapy that was required prior to Caleb receiving Colten’s cells. However, the family faced some unanticipated setbacks along this part of their transplant journey. Almost two-year-old Caleb came down with the adenovirus just days into his admission and he was completely confined to his room. This meant the toddler could not roam the hallways or go to the BMT playroom, which the family had relied on heavily. The virus hung on for most of Caleb’s hospital admission; Kristin tried to be strong but eventually had to leave Caleb’s room to allow nurses to handle blood draws, medicine time and invasive procedures.
Throughout these challenging days of living away from home and working remotely when possible, the COTA for Caleb K volunteers were steadily planning fundraisers and soliciting online contributions in honor of Caleb. Kristin said, “Support from our COTA volunteers literally started pouring in, and oftentimes, from unexpected sources. COTA was the catalyst for lifting us up during a dark and confusing time, which ultimately led to our COTA team not only meeting, but exceeding, the fundraising goal before our son got his transplant.”
On May 24th, Colten’s cells were harvested, and Caleb received his bone marrow transplant. On June 19th, Caleb was discharged across the street to the Ronald McDonald House, and on July 24th Team Kachur Four were released to return to their home.
Thanksgiving 2018 brought an unexpected hospital stay back in Columbus for the family. It appeared Caleb might be losing his graft, i.e. his new immune system, and that his old one might be taking over. The family faced another donation from Colten and transplant during that holiday season, which proved to be much more challenging than the first. The stem cell transplant occurred between December 5 and December 7, 2018. While feeling somewhat defeated, both Kristin and Kevin were relieved to eventually learn Caleb did not lose his first graft and his immune system remained where it needed to be. More prayers answered for these worried and exhausted parents and their two little boys.
Now, four Thanksgivings later, the Kachur family’s unique and prolonged medical journey continues. In June 2021, their family of four became a family of five with the addition of now 17-month-old Crosby. Unfortunately, two weeks after Crosby’s birth, genetic testing revealed that Crosby also had ICF Syndrome and would need a bone marrow transplant to have a chance at life. It was also quickly determined that older brother Colten, Caleb’s donor, was only a weak 5/10 match for Crosby. There was one helpful and comforting element of Crosby’s diagnosis. Kristin and Kevin had already traveled this road.
Despite being proactive with preventative antibiotics, Crosby’s journey has been dramatically different and his symptoms more severe than Caleb’s. Kristin and Kevin were not expecting the level of care Crosby would require even early on, immediately presenting with severe feeding and swallowing issues, verging on failure to thrive, not even making the growth chart and requiring a feeding tube at four months. He was ultimately admitted to Nationwide on May 11, 2022. Several days later, Crosby received his life-saving transplant on May 24th – the exact same day when four years earlier Caleb received his life-saving cells from brother Colten.
To prevent the need for a second transplant (as was the case with Caleb), Crosby underwent a stronger chemo regimen that led to many complications in combination with his younger age. As a result, he endured a four-month hospital stay with discharge happening on September 13th. Kristin and Crosby continue to stay in Columbus, Ohio, to be close to the transplant center, which is about a two-hour drive from their Findlay home. And though this six-month process has been unexpected, the Kachur family hopes to finally be fully reunited at home … on Thanksgiving.
Kristin took a little time to reflect and share these words of gratitude.
First and foremost, we are grateful COTA is empathetic. They listened to our worries and concerns as a new ‘medical mom’ and ‘medical dad.’ They read our blog posts, looked at our photos, and would specifically refer to them during phone and email correspondence. In addition to the emotional burden of caring for two sick children, it is very difficult to predict the scope of medical care and expenses as you step into a transplant journey. Due to the decades of experience working with transplant families, COTA was able to help us determine a realistic fundraising goal for a lifetime of transplant-related expenses.
The peace of mind this afforded truly cannot be put into words. Once we went to transplant, we knew we would be stuck in a hospital room for a minimum of six to eight weeks, followed by another month minimum stay at the Ronald McDonald House. The list of isolation and cleaning requirements (pre and post BMT) from the hospital was also very daunting. Once the fundraising goal was met, we were freed from financial distractions.
COTA funds covered the ongoing costs of expensive IVIG (Intravenous Immunoglobulin) infusions to boost both Caleb’s and Crosby’s immune systems, regular deep cleaning of our home, in-home physical, occupational and speech therapy, and many of the medical bills associated with the ICF diagnosis … including nearly a dozen ER stays and several life flight and ambulance rides from our local hospital to Nationwide Children’s.
COTA’s proactive involvement early on in our transplant journey ultimately allowed us to focus on caring for our three sons, be emotionally present and tune in to those small, precious moments we often miss in life while worrying about how to pay for everything. Even the simplest of moments … a smile, a laugh, a hug, a walk outside … became the moments that held us together and brought us joy amidst the pending unknown. We were isolated (and continue to be isolated) and are often unable to connect with our family and friends due to health risks, but we have each other and the knowledge that, thanks to COTA, many were, and are, supporting and connecting with us from afar.
Once our sons were admitted to the hospital, COTA funds were a Godsend yet again … travel and food expenses … all the medical bills associated with a long stay at the transplant center … medical expenses including pre BMT work-up testing and exams … several different types of chemotherapy … many viral/bacterial tests … specialty medications to treat BMT complications … daily blood draws, as well as Caleb’s brother’s bone marrow harvest and the transplant itself. These bills continued to steadily pour in, and with COTA by our side, we were spared a lot of worry and anxiety as we opened envelope after envelope from our insurance company. Ultimately, we have heard ‘I don’t know’ or ‘I’m not sure’ from our doctors many times since 2017 throughout this rare diagnosis and transplant journey. But what we have always been able to confidently count on is that fact that COTA will always be there, walking this ongoing transplant journey by our side.
Most recently in the family’s journey, Caleb has been struggling with his eyesight. He has developed an eye condition called exotropia, as well as blindness in his right eye due to a damaged optic nerve. These new health complications will require glasses, regular checkups at Nationwide and possible eye surgery. Kristin said, “Despite the emotional stress this new issue has caused, while we waited for answers, we were once again gifted with an underlying peace and reassurance because of COTA’s presence in our journey.”
Today, Caleb loves to color, build puzzles, play pretend, eat snacks, play with both of his brothers, sing and dance and adores anything to do with Disney. It was a blessing that Caleb started Kindergarten this year and was able to join the Cub Scouts. Caleb is also an avid swimmer.
This Thanksgiving, the Kachur family’s table will be full of grateful hearts and their Thanksgiving blessing will be brimming with unending thanks for Colten’s cells, Caleb’s health, Crosby’s recovery and the peace of mind COTA has provided. Happy Thanksgiving, Team Kachur from COTA!
National Marrow Awareness Month is observed each November. During this time, the accomplishments of physicians who perform transplant research are celebrated. Bone marrow and stem cell donors are remembered with gratitude for saving lives nationwide. Each year in the United States, more than 17,000 people are diagnosed with life-threatening illnesses that require a bone marrow, stem cell or cord blood transplant, which replace diseased cells with healthy cells. The more people who donate marrow; more people will survive. Please consider becoming a bone marrow donor.
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.
COTA Kids Crosby and Caleb Kachur
Bone Marrow Transplant Recipients
