The power of one: a parent’s perspective

Posted September 21st, 2012 by Be The Match and filed in Patient Stories
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“Caleb was so little, so sick, and so scared of the hospital; of being poked, examined, and forced to take medicine. When the doctors and nurses would come in to his room, Caleb would run to me. He wanted me to scoop him up and take him away – protect him from what was about to happen. Instead, I had to help hold him down so the doctors could do what they needed to do. I was his mom and he didn’t understand what I was doing. He would just look up at me crying out “I’m sorry. I’m sorry.”

Ann Nord of White Bear Lake, Minn. knows a parent’s hell on earth. And she knows what it’s like to escape it.

“I never want to hear anyone again say: “I’m only one person. What can I do? Meet my son and experience first-hand what one person can do – what any of us can do,” Nord said.

Caleb, now four, was born with a genetic life-threatening immune disorder called familial hemophagocytic lymphohistiocytosis (HLH). Without a marrow transplant, it was just a matter of time.

But like most patients in need of a marrow transplant, Caleb had no matching donor in his family. He would have to rely on the kindness of strangers and hope to find a marrow match on Be The Match Registry®, the world’s largest listing of volunteer marrow donors.

Caleb found his match and in August 2012 – two years post-transplant – met his donor, Missy, a young wife and mother from Michigan. Caleb sums her up: “Missy gave me my new blood and made me all better.”

Thanks to Missy and the doctors and nurses at the University of Minnesota Amplatz Children’s Hospital, Caleb is doing well, off most medication and off to pre-school this fall.

But celebrating their child’s health isn’t enough for Ann and Jeremy Nord. They know that today, other families are going through the same hell – feeling utterly powerless to protect their child from harm.

“We were terrified we wouldn’t find a donor. You hear of patients who can’t find a marrow match. What do they do?” Nord said. “I kept pressing the doctor: What if Caleb can’t find a match on the registry? What if …? The doctor would just stop me and tell me not to worry because we were of northern European heritage. That’s when I asked: What does that mean? What if we were African American or Asian or some other race/ethnicity? His answer shook me: ‘Then you would be far less likely to find a donor. ‘ ”

“Right then and there we decided that no matter the outcome with Caleb, we would fight to grow the marrow donor registry.”

Each year on the anniversary of his transplant, Caleb’s family hosts a marrow registry and blood drive to celebrate Caleb’s “rebirthday.” This year’s was particularly special because Caleb’s donor joined them. The two families met in person for the first time.

“If it weren’t for Missy … had she not said ‘yes’ to donating her marrow, it would only have been a matter of time,” said Nord. “She is responsible for our child being here today. I want people to see first-hand what one person can do in this world.”

When Missy Slauter joined the Be The Match Registry in 2007 it was a bit of a fluke. She worked at a hospital as a phlebotomist and it was a “slow day.” There weren’t many patients and she saw a brochure about joining the marrow registry and just signed up. “God
gave me a healthy body, so why not share it,” said Missy.

When she got the call in June 2010, she had forgotten she had joined. “All I remember is this voice saying that I might be a marrow match for a 1-year-old little boy who needed a transplant. How can you say “no?”

Missy said she had heard all these horror stories about the pain of donating marrow. “But I have to say it wasn’t like that at all. It was uncomfortable for a few days, like falling down on the ice on your tailbone, but it wasn’t painful. I would do it again and again.”

At the time of her marrow donation, Missy was married but hadn’t started a family yet. Today she and her husband, Paul, have 8-month old Jackson. “Now that I have a child of my own, I have a much better understanding of what Ann and Jeremy went through. I can’t imagine. I don’t even want to imagine.”

Caleb’s story may have more than one happy ending. Missy’s husband, Paul, joined the Be The Match marrow registry after his wife’s donation in 2010. He’s been matched to a patient and expected to donate his marrow later this fall.

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