GREENVILLE, S.C. – Hailie and Treylin Hyman saw the bruising on their baby girl’s leg as a sign that the active 1-year-old was learning to walk.
But as a blood test would later reveal, little Maci was actually suffering from an extremely rare blood cancer that threatened her life without a risky treatment – a treatment almost as dangerous as the disease.
“In the beginning, it was very scary,” Hailie Hyman told The Greenville News.
“I couldn’t think of anything but the bad things,” she confessed. “It was all about the statistics. And the statistics aren’t good.”
Terrifying months followed the diagnosis, punctuated by one critical complication after another, leaving the Boiling Springs couple to wonder if Maci would survive.
Somehow, though, the blue-eyed toddler pulled through. And now her family is looking forward to a special Thanksgiving with much to be grateful for.
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Family’s nights filled with prayer
The Hymans’ journey began last February at Maci’s 1-year-old well-child checkup.
“We had no idea anything was wrong,” her mom said. “But they did a routine (blood test) and a couple of hours later, we got a call saying her platelets were very low.”
The Hymans were referred to a hematologist who found other abnormalities in Maci’s blood and scheduled a bone marrow biopsy to investigate further.
During the procedure, the child suffered an aneurysm in an artery and went into cardiac arrest. The team performed CPR on her for 20 minutes before she was stabilized, her mom said.
Later, in the pediatric intensive care unit, she suffered internal bleeding, too.
“It was really hard,” she said. “There were many nights that I would just pray and pray and pray.”
Four in a million
Initially believing Maci had leukemia, doctors subsequently determined she had myelodysplastic syndrome, or MDS.
The condition occurs when abnormal cells in the bone marrow leave the patient unable to make enough blood, according to the American Cancer Society.
It’s rare, afflicting as few 10,000 Americans a year, though the actual number is unknown.
In children, it’s rarer still. Most people are diagnosed in their 70s.
“We were told that just four out of 1 million children get it every year,” Hailie Hyman said.
That made the diagnosis elusive at first, said Dr. Nichole Bryant, a pediatric hematologist-oncologist with Prisma Health-Upstate, formerly Greenville Health System.
“She’s the only one I’ve seen in my career,” she said.
Maci had to have regular blood transfusions, antibiotics and other medications to fight the MDS, Bryant said. But the only hope for a cure was a stem cell transplant at the Medical University of South Carolina in Charleston.
“When they said that was the only treatment plan for MDS, I of course went to Google,” Hailie Hyman said. “I read about transplant patients and … all the complications. It was terrifying. But no matter how many bad things I saw, we had to do it. There is no other option.”
The transplant is extremely risky.
First, high doses of chemotherapy are given to destroy the diseased bone marrow, leaving the patient without an immune system, so fighting infections becomes a challenge. Then healthy donor marrow is infused.
It’s also fraught with potentially life-threatening complications, including graft vs. host disease, which occurs when immune cells from the donor attack the patient’s body, Bryant said. Other complications include permanent kidney damage and gastrointestinal problems.
‘We almost lost her’
“They have to go to hell and back,” she said. “But it’s the only option for long-term survival.”
Maci had a really rough start, suffering “lots and lots and lots” of complications, Bryant said.
Her kidneys failed, so she wound up on dialysis. When she couldn’t breathe on her own, she was put on a ventilator. And because she couldn’t eat, she had to be tube fed.
She had blistering sores in her mouth and throughout her GI tract, her mom said. Because her liver wasn’t functioning properly, her abdomen filled up with fluid that had to be drained. She was bleeding so profusely in her lungs that one of them collapsed.
Maci, who was sedated through much of it, was put on full life support, she said.
“That night we almost lost her,” her mom said. “We were in the hallway crying our eyes out. We didn’t know what do to or think. It was pretty scary for a while.”
‘She is really a miracle’
Somehow, Maci made it.
“There were so many times during her first months that it seemed like she would not survive,” Bryant said. “So the fact that she is here … is really a miracle.”
Maci’s family found an unrelated donor through the National Marrow Donor Program, enlisting hundreds of other people to join the registry in the process, Bryant said.
“It was an important part of their journey that maybe didn’t directly benefit Maci,” she said. “But if everybody did that, we wouldn’t have difficulty finding a donor for anybody.”
Doctors have no explanation for why Maci got MDS. She didn’t carry the genetic mutation for it and there is no family history.
“She is a rare child – and not in a good way,” her mom said, adding, “You’ve got to laugh sometimes or you’re going to cry.”
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Thankful for family and friends
Maci was admitted to MUSC on June 2 and released on Oct. 14.
The Hymans, both 22, spent the entire time in Charleston while Hailie’s mom cared for their older daughter, Athena, now 2½.
Treylin’s employer held his welding job open for him. And other friends and family members did what they could to help.
“We had many, many people very generously donate to us to cover expenses at home and living expenses where we were,” Hailie Hyman said.
“We are thankful for everyone who helped us through it – the cards, the gifts, the donations. Every single cent is greatly appreciated.”
Maci’s doing well, but recovery from a transplant can take months to years, Bryant said.
Her kidneys are functioning again so she was able to come off dialysis. But she still must take many medications, including anti-rejection drugs that suppress her immune system and leave her at risk for infection. And she still must be tube fed.
“She is miles ahead of where she was two months ago,” Bryant said. “But she still has a long way to go. It’s a long, long road.”
Maci’s mom says she can be up and playing one day and flopped over on the couch another. She still experiences a lot of nausea and vomiting, but is doing well compared to where she was.
So as the nation pauses to give thanks this Thanksgiving, she says the family will be counting their many blessings – family and friends, God’s mercy, and the doctors and nurses who saved Maci’s life.
“She has battled a lot and overcome a lot,” she said. “I have no doubt she will be able to get through.”
Want to know more about becoming a marrow donor? Go to bethematch.org.
Follow Liv Osby on Twitter: @livgnews
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