Always in good hands

Parents don’t always want their children to carry on family traditions. Jason and Darlene knew that adrenoleukodystrophy (ALD) ran in their family because Darlene’s older sister had lost two sons to the disease.

“When we found out that all three of our boys, Owen, Dylan and Jacob, had it, we were devastated,” says Darlene. “We felt like it was a ticking time bomb not knowing if or when it would go off.”

None of the boys exhibited any signs of illness, but they diligently had MRIs every year. Each time, the scans came back clean—until April of 2006. “When the boys were done, our doctor said she needed to talk to us,” remembers Darlene. “My heart sank.” Sure enough, Owen’s MRI showed deterioration. “Right at that moment, our whole world changed,” she says.

Treatment in the hands of experts

Owen was five years old when he was diagnosed. The family came to the University of Minnesota at the suggestion of their physician, who said the university doctors were experts with ALD and bone marrow transplants, “We wanted nothing less than the experts to treat Owen,” Darlene says. Owen was admitted to the University of Minnesota Amplatz Children’s Hospital on July 25th 2010, on August 4th he received a stem cell transplant of double units of umbilical cord blood.

During Owen’s hospital stay, the older boys were due for their six-month MRI. It was during this checkup that they discovered Owen’s brother Dylan, would need a transplant, too. “This was beyond devastating,” says Darlene. “We had one child in the hospital recovering from a transplant and another that needed one, too!” Dylan’s transplant took place on October 4 with bone marrow cells from a live donor.

“In good hands” with Care Partners

Darlene remembers how much she and her husband relied on the help they received from two Care Partner volunteers, Megan and Nance. Care Partners is a Children’s Cancer Research Fund quality-of-life program that provides non-medical support to patients and their families.

Megan was there to help with Owen so Darlene and Jason could grab some food, a nap or a shower without worry. “We knew Owen was in good hands with Megan,” says Darlene. “She would read to him, play games or just sit with him while he slept.”

Nance was Dylan’s Care Partner. She would come to the Ronald McDonald House and watch all three boys so Darlene and Jason could go out to dinner. Nance even made a donation to Children’s Cancer Research Fund in honor of the boys.

Recovery, baseball, and track

Today, all three boys are doing well and are preparing to play baseball. Owen, now 8, has some memory issues and trouble with reading and writing, and he has developed asthma, but he is a very active 8-year old, according to Darlene.

Dylan, 15, lost some hearing and some reflex in his legs, but he ran with the track team and went to his first Homecoming dance last fall. He is learning to play the guitar.

So far, Jacob’s MRIs have been clean, but the worry doesn’t stop. “We will be going in for an MRI again soon, and I pray that it comes back clean,” says Darlene. “It is a constant worry, and we dread each time we have to go.”

The most difficult part of this health care journey has been the fact that her children did not seem or look sick, according to Darlene, “but what was going on inside their bodies was a different story. This experience has made our family so much stronger and much more aware of how precious life is.”

Presenting a seminar she calls Prosthesis 101 to a class of elementary school kids is all in a day’s work for Laurie of Duluth, Minnesota. It’s just part of being Mariah’s mom – a bigger job than she expected when she took it on, but one Laurie wouldn’t trade for anything.

The Beginning of a New Family

Both Laurie and Mariah live by the motto, “If it’s to be, it’s up to me.” Laurie separated from her husband after struggling for years with infertility; but that didn’t stop her from wanting a family. She traveled to China when she heard about the plight of orphans, especially girls, in that country. After two weeks, Laurie came home with Mariah and became a mother.

Eleven months later, Laurie went to the courthouse to finalize her adoption of Mariah. That same afternoon she found out that a bump on Mariah’s left ankle was a malignant bone tumor. Mariah was just two years old.

A Rare Disease for a Two-Year-Old

The Duluth orthopedist who found Mariah’s tumor referred the family to Dr. Edward Cheng, an orthopedic surgeon at the University of Minnesota. Dr. Cheng, together with pediatric oncologists Drs. Joe Neglia and “Krish” Krishnamurti, supervised Mariah’s treatment plan. Dr. Cheng took a biopsy and diagnosed Mariah with osteogenic sarcoma, a type of bone cancer that usually occurs in children quite a bit older than Mariah. (Osteogenic sarcoma is the sixth most common malignancy in children and the most common type of bone cancer in children.) The cancer was located on her left shin bone and it was growing very fast. Mariah would need chemotherapy to kill the tumor. Then her left leg would have to be amputated below the knee.

That’s how Mariah and her Mom became experts on the subject of prostheses. Mariah is now on her fifth leg. She will need several more before she is full-grown. To ease the fears of Mariah’s schoolmates, Laurie often goes to Mariah’s classes to talk to them about her daughter’s prosthetic leg. She drew some pictures on the white board and spoke frankly to the kids about tumors and cancer. “The tumor had to go and that meant Mariah’s leg had to go,” she told a spellbound class. “Then,” she recalls, “Mariah took off her leg and passed it around.” After that, nobody thought of Mariah as “different.”

Though she spent several weeks in a body cast and went through many months of hospitalizations, painful treatments, surgeries, and complications, Mariah seems to bear few scars. She likes being in school and loves to read. Other things she likes doing – and does well, prosthesis and all – include bike riding, cross country skiing, gymnastics, softball, and wall-climbing! Her mom brags that Mariah is “the fastest kid on the wall” at the Shriner’s day camp, and Mariah’s attitude is “Hey, I can do it, just like you.”

Mariah has been an active participant in Children’s Cancer Research Fund’s annual family event, Time to Fly. Since 2003, Mariah and her mom Laurie have rallied family, friends and neighbors to join “Team Mariah” and celebrate Mariah’s amazing recovery from cancer, while raising funds for groundbreaking cancer research.

Support Allows Them to Press On

All along Laurie and Mariah have had family and friends to rely on, as well as the strong support of their church. That web of support, along with their own remarkable spirit, have carried them successfully through the intense challenges faced by kids with cancer. Laurie knows they will face other challenges as Mariah grows up, but this family is prepared for whatever the future hold. As Laurie says, “You always compare things to cancer: Is it as bad as cancer? Nope. We can do it.”