“We heard about the Children’s Organ Transplant Association (COTA) from our transplant social worker. We were confused at first, but when we called the 800 number the staff took the time needed to explain in great detail how COTA could help. COTA has been by our side through Ricky’s TWO life-saving transplants. It gives us Read More

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Kidney Transplant Recipient

Posted on June 5th, 2017

Bloomington, Indiana June 5, 2017 June is a month full of family and fun, especially on the third weekend when families gather to celebrate dads. Father’s Day has become a very special holiday for the Hummel family of North Aurora, Illinois. They experienced a miracle when their son, Calvin, received a kidney and a second chance at life from his daddy.

Calvin Hummel was born to first-time parents Garrett and Heidi in March 2014. Garrett and Heidi were so excited to welcome their baby boy home and they quickly decided adorable Calvin was the center of their family’s universe. He was a happy baby whose smile lit up every room.

However, in late January 2015, Garrett and Heidi became very worried when Calvin just did not seem to be his happy self. He had recently caught the flu so his parents took him to a nearby emergency room because they feared he had become dehydrated. After running a urinalysis and some blood work, the local hospital medical team told them Calvin was not dehydrated … he was in kidney failure. Garrett and Heidi were stunned, but were willing to do whatever it took to seek additional testing to figure out the ‘next steps’ with their sick baby. The local hospital referred the family to Lurie Children’s Hospital of Chicago to meet with the city’s top pediatric nephrologists.

Garrett and Heidi describe the last week of January 2015 as seven days filled with, at first, shock and then numerous questions and intense fear. Calvin’s genetic testing results showed infantile nephrotic syndrome as a result of a mutation on the WT1 gene. It was news that was hard to hear. What kind of treatment would Calvin require? What stage of kidney failure was Calvin in? What had caused his kidney failure? Would he need a transplant? And the hardest one of all … would he live? Thankfully, the pediatric kidney specialists at Lurie Children’s were able to answer most of their questions and most importantly, they told Garrett and Heidi that Calvin would likely live a long and happy life.

The Hummels were able to take Calvin home and return to their normal routine for the next six weeks. On March 10, 2015, Calvin was admitted for what would be his longest and most stressful hospital stay. Due to very poor lab results, the family was told to report immediately for a hospital admission. By the end of that week, Calvin’s kidneys were not clearing any fluid, he had become fluid overloaded and he needed immediate access to dialysis. Garrett and Heidi were in shock. On that day, Calvin had two emergency surgeries and was sent to the PICU where he spent several, painstaking weeks. On April 1st, Calvin was taken into surgery again; this time to have his kidneys removed because they posed a threat of forming cancerous tumors. Dialysis had now become a regular reality for little Calvin and his parents.

Garrett and Heidi’s questions swelled as they wondered how everything had happened so very quickly. Calvin’s recovery from having his kidneys removed was full of complications, but he was finally discharged nearly two months later to return home with his exhausted and nervous parents.

It was during Calvin’s 11-week hospital stay when Heidi and Garrett started considering some type of fundraising effort because the ‘down-the-road-sometime transplant’ was now looming in the near future. The Hummels were slightly hesitant about fundraising because they had worked very hard to be financially stable as a family. It was indeed a challenge for both of them to set aside their pride and start the process of asking for help.

During a meeting with the transplant financial advisor at Lurie Children’s, it was recommended the family research the Children’s Organ Transplant Association (COTA) as an avenue for fundraising. Heidi placed a call to COTA in late April and felt immediately welcomed to the organization. She had many questions that were answered quickly and efficiently. She and Garrett talked several times about what fundraising would mean for their family, and they also started to think about family members, work colleagues and friends who might want to help with such an initiative. By the end of May, Heidi and Garrett signed and returned the COTA agreement. They had watched Calvin’s health continue to decline, had become very accustomed to the four days per week dialysis routine that included a one-hour drive each way, knew a kidney transplant was inevitable for their little boy … they were ready to get started.

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 community team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA in honor of Calvin are tax deductible to the fullest extent of the law, and these COTA funds are available for his lifetime.

According to Heidi, “When we first began our transplant journey, we were terrified. COTA gave us hope by sharing the stories of patients who had already received their transplants. It was inspiring to see the different children who had come so far and received their transplants. We looked forward to seeing the COTA Facebook updates of recently transplanted patients. Reading those updates we knew that soon, Calvin would get his transplant too.”

In June 2015, a COTA fundraising specialist traveled to North Aurora, Illinois, to meet with family’s volunteers and walked them through the entire process. Within days of their on-site training, the COTA team in honor of Calvin H was off and running, planning fundraisers and working with COTA’s team of professionals.

“COTA came to Chicago and brought together our friends and family members to train and inspire them on how to make the most of fundraising for transplant-related expenses,” Heidi said. “The COTA Challenge Grant encouraged our amazing team of volunteers to get moving with fundraising plans during the first six months of working with this awesome organization. Once our team got going, we were all touched by how easy it was to work with COTA. There is always someone from COTA who is available to answer questions about expenses and allocations and thank you notes for contributors … absolutely anything. The entire COTA family proved to us they are committed to making the transplant process easier and less stressful for families, and they go above and beyond to do so.”

During the middle of July while the COTA in honor of Calvin H team was moving forward with successful fundraising events, Garrett and Heidi received the thumbs up to begin testing to find a kidney donor match. The Hummels decided Garrett would be tested first and by mid-October all testing was complete. They were told Garrett was a suitable kidney donor. The next hurdle was waiting for Calvin to reach the minimum weight of 22 pounds, which is required for the transplant to occur. On November 12, 2015, Calvin reached the weight benchmark and the daddy-to-son kidney transplant was scheduled for February 1, 2016.

While waiting for kidney transplant day, the COTA in honor of Calvin H team was very busy planning a Piano Keys & Kidneys COTA fundraising event. It turned out to be a huge hit with the Chicago community and the event raised just over $56,000 for transplant-related expenses. Garrett and Heidi were amazed and continued to feel extremely supported by COTA and by their committed volunteers.

Heidi says the months between Calvin’s hospital release in May 2015 and his February 2016 transplant were full of bumps in the road. During this time, Calvin was hospitalized for many different reasons including clotting in his hemodialysis catheter, infections, fevers (including one on Christmas Day that required hospitalization), dislodged catheters that had to be replaced and problems with Calvin’s feeding tube. Through all of the complications, Garrett and Heidi took things one day at a time. Heidi did have to take a leave from her teaching job, however, due to the extensive amount of daily care Calvin required.

“We are so grateful that we reached out to COTA when we did,” Heidi said. “Having COTA funds available for numerous transplant-related expenses even before the transplant provided great financial relief and helped ease the stress associated with caring for a chronically ill child. We were reimbursed for travel expenses to and from the city, meals while Calvin was hospitalized, co-pays for his many different appointments and prescriptions, as well as receive household assistance since I had to take a leave of absence from work.”

The family was elated when February 1st finally arrived. The removal of Garrett’s kidney and its transplant into Calvin was a textbook procedure and Calvin was discharged just eight days post transplant. Since transplant Calvin has been living life to the fullest. He loves running in the park that is close to the Hummel home and he enjoys the family’s frequent visits to the local children’s museum. Most exciting for Calvin has been the arrival of his baby brother, Henry.

“COTA provided hope for our family by ensuring hope for Calvin’s future,” Heidi said. “COTA funds will be available for Calvin’s lifetime. By working with COTA, we are hopeful that as an adult Calvin will not be strapped down with medical expenses as he is paying for his first home or as he starts his family.”

Thanks to COTA, and to Dad Garrett, Calvin is well on his way to growing up, tormenting his little brother, enjoying life and entering adulthood just like the other children he plays with at the park.

Happy Father’s Day to an amazing COTA Dad!