April 28, 2015 | by Nicole White
Updated: May 1
No parent ever wants to see their child hurting or sick in any way. Joanne Cooper’s daughter Amanda wasn’t sick, though. She seemed healthy. Vibrant. A straight-A student whose only major health ailment had been bouts of stress-related nausea.
Then a blood test revealed that Amanda – now 9 years old – had myelodysplastic syndrome – her blood stem cells were not maturing into red blood cells, white blood cells or platelets. She needed a bone marrow transplant, and none of her family members were a match.
“I remember Dr. (Stephen J.) Forman saying to me, ‘What do you want?’ I looked at him and said I wanted a miracle,” Cooper said. “I just wanted the thing to be gone.”
Forman told her that a matching donor for her daughter could be found. Amanda had her transplant in February 2013. As Cooper recalled: “‘This is the miracle,’ he said. “And it really was.”
That miracle came from a young man in Germany named Lars Nijland. Amanda and her parents Greg and Joanne Cooper thanked him in person at City of Hope’s 39th annual Bone Marrow Transplant Reunion. The Coopers were among the 4,500 patients and family members who celebrated survival and second chances. The festivities kicked off with Amanda and another patient, Yesenia Portillo, meeting their unrelated donors for the first time.
“How do we thank them? What do we give them? There’s nothing on this earth,” Joanne Cooper said. “They’ve given us the greatest gift.”
An unexpected diagnosis
Amanda's battle with myelodysplastic syndrome began in 2012. She had been scheduled to see her doctor because of her frequent stomach problems, but the nausea episodes vanished with the advent of summer vacation. Her mother kept the appointment anyway.
A routine blood draw revealed her condition.
Amanda faced her diagnosis and treatment without fear. She stayed at City of Hope for 55 days after her transplant. She was connected with a tutor to keep her up to date on her studies. She participated in activity groups with other pediatric patients. She learned how to play the ukulele from a volunteer. She even showed off her new Irish dancing skills, even while connected to the poll that held her IV bag.
“This isn’t the worst thing in the world,” Amanda told her mother. “Think of all the nice friends we made.”
Joanne Cooper agreed, saying the family cried when Amanda was discharged from the hospital.
Amanda’s teddy bear Honey Buns – or Honey, for short – was her constant companion. She snuggled up with him in her hospital bed, brought him to groups, and now, he accompanies her when she speaks on behalf of Be the Match, encouraging others to do the one thing she can’t: Become bone marrow donors.
A message for her donor
From their home in Henderson, Nevada, the family compiled a scrapbook to share all of the adventures Amanda’s had in the two years since her transplant: She’s done a ribbon cutting where she shook hands with Buddy Valastro, the “Cake Boss.” She squealed in a rally car ride with a Top Gear personality. She recently starred in her school play “The Jungle Book” as Bagheera. She’s won state art contests. And she's back to being a straight-A student.
“I can’t wait to show my donor how much fun his bone marrow has been having,” Amanda said.
Learn more about the Hematologic Malignancies and Stem Cell Transplantation Institute at City of Hope and more about joining the bone marrow registry through Be the Match.
Learn more about becoming a patient or getting a second opinion by visiting our website or by calling 800-826-HOPE (4673). You may also request a new patient appointment online. City of Hope staff will explain what's required for a consult at City of Hope and help you determine, before you come in, whether or not your insurance will pay for the appointment.