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Blood marrow drive for local 14-year-old battling rare form of leukemia

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Daniel HailpernTHE Denver community is urged to attend a bone marrow match drive for 14-year-old Daniel Hailpern on Sunday, Aug. 17, 11 a.m.-2 p.m. at Denver Jewish Day School, 2450 S. Wabash St.

Daniel has acute promyelocytic (M3) leukemia, or APML, an exceptionally rare and aggressive form of the disease.

Bright, friendly, athletic and a devout football fan, Daniel would like to become commissioner of the NFL in the future.

Locating a compatible donor for a bone marrow transplant — his best option for a cure — may give Daniel the gift of time to reach his goal.

Registering for the drive is a free, simple and painless procedure involving a health screening and a 30-second cheek swab.

Donors must be between the ages of 18 and 55; in general good health; willing to donate to any patient; a permanent US resident; at least 4’10” and 110 lbs; and not previously registered.

Daniel, who has attended Denver JDS since kindergarten and played basketball and soccer, is currently undergoing his second round of chemo at Children’s Hospital at Anschutz.

His body did not respond as anticipated to the first chemo regimen. A third round lasting four to five weeks is already scheduled.

Daniel is the son of Nadine and Rob Hailpern and the brother of Matthew, 15.

Unfortunately, their marrow was not a match.

National and international blood marrow banks are searching for a compatible donor, “and there are good possibilities out there — but it’s a very lengthy process,” Nadine tells the IJN.

“Now everyone, including our extended family, is as good a candidate as anyone in the world.”

People kept asking the Hailperns, “What can we do to help?” Organizers came up with the idea for a bone marrow match drive.

“People with the same ethnicity have a better chance to be a match,” Nadine says.

“The August 17 drive is a great opportunity to find someone right here in our community for Daniel — and to fill the registry banks for all those in need.”

Daniel hopes the donor drive benefits everyone, not just himself.

“Our son is a 14-year-old kid whose attitude is beyond phenomenal,” Nadine says. “Doctors consult with him about every detail. Daniel is part of the team. And he’s always asking them, ‘Have you figured this thing out yet?’”

Recently, Daniel listened as physicians explained complicated medical realities and potential outcomes for 30 to 40 minutes. Facts were neither concealed nor sweetened. The situation could have frightened any patient.

“The doctors constantly asked Daniel whether he had any questions,” Nadine says. Her resolute voice breaks. “He had one question — whether the transplant might hurt the donor. ‘What does this mean for him, or her?’

“With everything he’s going through, his only concern was for the other person.”

ABOUT a year ago, Daniel was injured in the hip area while playing soccer. He had to use crutches and stay off his feet but eventually received clearance to resume his athletic pursuits.

A while later, he hurt his foot so severely during basketball that he had surgery. He healed nicely and headed to the slopes for a little skiing, which he also loves.

It happened again.

“Daniel reinjured the same hip that he damaged in the soccer mishap,” Nadine says. “It was worse than the first time and the doctors put him in the hospital.”

They suspected an underlying problem, but the exact cause eluded them. “We all kept looking for answers,” Nadine says.

Physicians concluded that Daniel had chronic recurrent multifocal osteomyelitis, or CRMO, an autoinflammatory disease that usually affects children. Despite treatment, however, Daniel showed no improvement. The hunt for a solution continued. “We were baffled,” says Nadine.

In late May of this year, doctors ordered a full body MRI on Daniel. The results were devastating.

“On Friday, June 6 — we call it D Day for Diagnosis Day — they called us and told us to take Daniel to Children’s for a blood test. We got the results within an hour. It was leukemia.”

Additional testing confirmed APML, an extremely rare form of leukemia. Doctors had seen less than a handful of APML cases in adults and never encountered it in a child.

Five weeks of chemo did not yield the anticipated results. Following an eight-day reprieve, Daniel is now on his second round.

Typically cheerful and uncomplaining, Daniel did tell his parents not to let his friends visit him at the hospital. “He didn’t want to risk scaring them,” Nadine says.

Assuming a match is located, the bone marrow transplant will take place at Children’s.

Then Daniel will be in isolation for an entire year.

When people learned about Daniel’s condition, Nadine and Rob were deluged with anxious texts and emails. “But it was impossible to update everyone because things were changing so quickly,” Nadine says.

“So I started the blog danielsspace.weebly.com. Rob and I are with him at the hospital 24/7, so writing the blog was the only time I had for myself. Some of it is hard to read, especially when the news is bad.”

This week, he’s feeling better. Daniel has come through the most debilitating phase of chemo and is responding well to treatment.

“I will cherish this for as long as I can,” Nadine writes in her latest entry. “I enjoy every time we are out in the hall for a walk and see the faces [of all the nurses and doctors] light up when they see him looking so happy and great.

“He has every one of them wrapped around his little finger.”

The Hailperns take life one hour at a time.

“We get what we get,” Nadine tells the IJN, “and we deal with it.”

Watch out, Commissioner Goodell. Daniel Hailpern is right on your tail.

Register online for the Drive for Daniel at www.deletebloodcancer.org.

Copyright © by the Intermountain Jewish News

Last Updated ( Thursday, 07 August 2014 14:49 )  

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