Wednesday, October 17th, 2018

Appreciating life after harrowing childhood disease

Posted on April 09, 2012 in News
By Paul Koenig

Rachel Miller sits in Abromson Center. Diagnosed with a rare and deadly blood disorder at the age of one, Rachel's has received almost 300 blood transplants.
Alex Greenlee | The Free Press
Rachel Miller sits in Abromson Center. Diagnosed with a rare and deadly blood disorder at the age of one, Rachel's has received almost 300 blood transplants.

Rachel Miller shouldn’t be alive.

At the age of one, Rachel was diagnosed with an extremely rare blood disease that had killed nearly every child before her with the disease. But she said with the help of a miracle from God, she survived and is now a sophomore at the University of Southern Maine.

“It definitely gives you a different perspective,” she said, “knowing you shouldn’t be here.”

She said she uses her experience to help others going through difficult times. She volunteers at the Root Celler in Portland, a Christian mission that serves area youth and their families. She also spent her spring break in San Pedro, Guatemala helping youth at a school with 11 other students from the Navigators Christian Fellowship — a student group on campus.

Rachel also said the experience brought her and her parents, Diane and Rob Miller, and her brother Robbie, closer together.

“Every day is a day they didn’t think they’d have with me,” she said.

Not a lot is known about the disease, familial erythrophagocytic lymphohistiocytosis, or FEL. With the disease, a child’s immune system isn’t able to turn itself off after fighting off a sickness. The cells defending the body against infection — lymphocytes, a type of white blood cell — produce a protein stimulating the production of cells to clean up after a virus. But with FEL, instead of just taking care of the diseased cells, they begin attacking red blood cells.

A few months after getting sick when she was one year old, Rachel still looked horrible, Rob said. They took her to the emergency room at Maine Medical Center. The doctors first thought it was leukemia.

“To us, that was as bad as it could get,” said Rob.

Rachel needed blood transfusions on a daily basis. Diane said she called the hospital every day to make sure there was blood available for Rachel. But sometimes the hospital had to check with American Red Cross to make sure they had blood that day.

“And I remember hanging up thinking, if there’s no blood, my daughter’s gonna die,” Diane said. “And that was just mind blowing for me.”

In total, Rachel has had 298 blood transfusions — the most of anyone else living in Maine.

They eventually brought her to the Children’s Hospital in Boston.

The doctors ran tests, crossing off the different possible ailments. At the end of a list of six was FEL.

The doctors told Rob and Diane they wished it had been leukemia. Hospitals had recently found a way to treat the FEL with a combination of chemotherapy to kill off the old bone marrow and then give a bone marrow transplant. Four children before her were successfully treated this way. But before that, all other kids had died.

First the hospital had to ensure Rachel was well enough for the transplant. Unfortunately, she didn’t respond to the chemo drugs like the other children. Her condition only worsened. They tried going through the chemotherapy protocol twice without success.

Diane recalled when a group of doctors and nurses sat her and Rob down to tell them to enjoy their remaining time with Rachel.

“She was just like a little blob in bed dying,” said Diane. “And I remember reaching over and grabbing Rob’s hand and just thinking, there’s nothing…”

Then Diane’s eyes lit up. “And he slams his hands on the table. Remember you stood up?” she said, looking at Rob. “And he looks at this table of doctors and nurses and said ‘That’s it? We just throw up our hands and say we’re done? Isn’t there anything?'”

A doctor then told them about an experimental drug that could possibly help stabilize Rachel. But Diane said the doctors were worried Rachel was so sick, it was OK to let her go. She said they didn’t want to put the family through any more pain.

Diane and Rob opted to try the drug. Luckily, the experimental drug worked well enough to stabilize Rachel. A benefit of their experience, Rob said, is that the experimental drug has been used to save other children’s lives since.

While going through protocols the first two times, they needed to find a bone marrow donor and a hospital that would give her the transplant. A few hospitals said no, but the University of Minnesota Hospital accepted Rachel. The hospital had done two of the four successful bone marrow transplants with FEL patients.

In the bone marrow registry, there were four matches. The top choice, DeLyle Henschel from Wisconsin — who later became known as Uncle D amongst the Millers, was willing to donate.

“When they sat down with us in Minnesota,” Rob said, “to tell us all of the possible things that could go wrong with the bone marrow transplant…”

“It feels like you’re setting your child up for death,” Diane interjected. “But she was dying anyways. We had no choice.”

The doctors had grave expectations for Rachel. “Even if she did make it through the transplant, they couldn’t promise us she’d ever talk again or walk or even learn to read or write,” Diane said. “And then to see her graduate from Deering High School as valedictorian, that’s God’s miracle.”

“Rachel was a fighter,” Rob said.

“She still is,” added Diane, chuckling.

The Millers will never know how many people saved their daughter’s life through the hundreds the blood transfusions Rachel needed.

“I think we’re living in a day where people think ‘I’m only one person. What difference can it make in this world,'” Diane said. “Donating even just one time, you don’t realize the life you’re probably saving because of your donation.”

Rachel said she thinks about her experience nearly every day.

“The fact that when I pick up the phone and call my mom, that wasn’t going to happen. I wouldn’t have that relationship today. She didn’t think I’d be here to this age,” Rachel said, her eyes filling with tears.

 

“When I get to see a friend and when they make me smile, that’s a smile that I wouldn’t have gotten.”

She said she’s made the choice to continue remembering her struggle with the disease. “You kind of have to wake up and let it change your life, instead of pretending it never happened,” she said.

Diane said the experience emboldened her faith. “Honestly, you get even closer to God when he brings you through hard things in life,” she said. “Even the doctors said they didn’t know how she was making it.”

Rachel, who is an education undergrad now, plans on graduating with her master’s degree in education in 2015. After that, she’s not sure where she’ll end up. She said she would like to work in Guatemala at some point, doing similar work that she did over spring break.

“I’m not going to waste this life,” she said.

Rachel said doctors aren’t sure if she’ll age faster as a result of trauma from her illness, with possible effects of more rapidly declining eyesight or weakening of her bones. But she said she isn’t worried about it.

“I’m alive. I shouldn’t be here,” she said. “So anything’s a blessing, honestly.”

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