The Power of Connecting

Posted May 13th, 2016 by Be The Match and filed in News
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BillyRegina’s son Billy was like most eighth graders -– he loved exploring outdoors in the Florida sun and participating in sports. He was a healthy, happy kid living his life. But in October 2012, everything changed.

Billy went to the doctor with swollen lymph nodes. Doctors suspected leukemia as the cause, but blood tests showed no sign of the disease. Regina still felt something wasn’t right. After many doctor visits with different specialists, an oral surgeon told Regina he’d never seen a case like Billy’s and to press for a biopsy.

It took two biopsies, but their worst fears were confirmed –- Billy had acute lymphoblastic leukemia (ALL). The cancerous cells were growing quickly and crowding out his bone marrow.

Frustrating treatment results

The day after Billy’s diagnosis, the family packed their bags and headed to treatment. Treatment in children with ALL typically reduces the number of leukemia cells within the first month and eventually leads to remission. This was promising to Regina as she watched her son fight this terrible disease. But Billy didn’t respond to the treatment as most children do. By the end of the treatment period, Billy still had far more leukemia cells than most kids who have the same treatment.

As a mother, Regina struggled to watch her son miss the milestones that they were so certain he would hit. Their family tried to be patient as treatment entered the consolidation phase–- but still, Billy’s cancer wasn’t responding the way it should. So, Regina turned to the internet to discover why the treatment wasn’t working for her son. After a doctor noted some unusual markers in Billy’s blood, Regina began to research.

During her online quest for answers, Regina found a study on kids with leukemia that addressed why they hadn’t survived. The study discovered a small percentage of children with leukemia had something in common: unusual markers within their blood. They labeled this as a subset of ALL –- Early T-Cell Precursor Leukemia (ETP) -– and Billy fell into that subset because of his unusual blood markers. Billy’s doctors agreed that Billy had this subset of ALL, which is why he didn’t respond to treatment like most children.

All of the research about ETP pointed to marrow transplant for survival. Regina knew this was their only option, so while Billy continued treatment to get as close to remission as possible, she again turned to the internet for answers.

A life-changing cross-country connection

Regina was invited into an online Facebook group called “Momcology.” The group consisted of parents whose children had some form of cancer, and it served as a support group and forum for questions, connections and a venue to vent. After learning of her son’s unique ETP diagnosis, Regina posted in the Momcology group to ask if anyone knew of this subset of ALL. At first, Regina didn’t receive a response –- in this group of thousands, it seemed like no one else shared her rare connection. But then Regina heard from Sara, a mom from Minnesota, whose son received the same diagnosis as Billy. Sara was just as surprised as Regina to find another person who shared this rare connection.

Regina contacted Sara, hoping she had a suggestion they hadn’t yet pursued. Regina was already contacting hospitals for Billy’s inevitable marrow transplant when Sara suggested the University of Minnesota (U of MN), where her son had his marrow transplant.

Regina called the U of MN transplant doctor, but her call went straight to voicemail. Discouraged, she left a message. Minutes later, her phone rang -– it was the transplant doctor returning her call from an airport tarmac, ready to depart for a flight to Africa. It was fate. As his plane was boarding, Regina and the doctor discussed options and next steps for Billy. The best option for Billy was a cord blood transplant.

In early 2013, Billy finally received his life-saving transplant.

Looking back and paying it forward

In addition to having a great team of doctors, Regina is grateful for the connections she made in the Momcology group, and specifically for the connection she made with Sara. Without it, Billy’s future was uncertain.

“To parents and family members in similar situations: do not be afraid to reach out, because there is power in sharing,” said Regina. “Technology and research are changing at such a fast pace, you never know what you’re going to learn. And when parents band together to share all of that energy and research, it’s a powerful thing. If you haven’t found an answer –- maybe another parent has –- and that’s the power. Because you’re all in this for the same reason: to help heal your child.”

Today, Billy is back to living his life and looking forward to his upcoming 18th birthday later this year. The transplant process has given Billy a stronger desire to help others through volunteering and mission work. The entire process has had a profound impact on his life, and the lives of his family members -– and they are forever grateful for the power of connecting that helped save Billy’s life.

3 Responses to “The Power of Connecting”

  1. Lisette Nolin says:

    I was also referred to this same group momcology and I must admit that it has been very resourceful. My child has ph+ ALL and he’s the only case from where we come from. So meeting other parents with kids having this same condition has been so helpful. He’s also due for a bone marrow transplant however he does not have a match yet. We would be happy if we could do a donor drive but this is impossible from where we come from.

    • Michi says:

      Oh my goodness, I’m sorry to hear that you cannot hold a drive. Where are you? Perhaps we can jointly hold one here in Raleigh.

      And I’m thrilled for Regina and Billy, having found a solution and cure! Thank goodness the doctor reasons so quickly! He wonderful fit being so caring and responsive.

    • Jim York says:

      Lisette,

      I wish I was a match. I’d donate for your child in a heartbeat.

      Sincerely,
      Jim

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