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One phone call can make all the difference in the world, especially when your child’s life is on the line.
“Oh, thank God.”
The young mother has been trying to be calm, but finally her voice on the telephone wavers and breaks. She has just learned that the one thing she wants most in life—her little boy’s rare disease to stay in remission—has happened, and against all the odds.
On the other end of the line, a physician at St. Jude Children’s Research Hospital intently studies test results that have turned out even better than he could have hoped. He has just called Gina Reinier to tell her that instead of settling in for many more months of treatment, she and 4-year-old Liam will be able to get on a plane and go home to Iowa.
All Liam knows is that he gets to see Daddy again…and his brothers and his best friend, Sean, and his room and his beloved Harry Potter video game. Liam can’t pronounce the name of the cancer that has threatened his life, but he knows that at least for now, there won’t be any more needles and hospital beds. He does not realize how slim the chances were that this moment would arrive, but his mom does.
A higher calling
One day last fall, Gina, a high school biology teacher, noticed a reddish, circular mark on Liam’s leg. The next day, his legs were covered with spots like chickenpox; then his appetite disappeared and he began sleeping all the time. As Gina remembers that October day, she glances over at her son, who plays nearby.
“Liam never, ever stops,” Gina says, “so I knew right away that something was wrong.” The pediatrician examined the bruises on Liam’s legs and asked to do some blood work.
“My science background was telling me, ‘Oh, she’s looking for hemophilia because of the bruising,” Gina recalls. “I knew he wasn’t hemophiliac, or we would have figured that out by now, and so I was fine with it—no problem. The doctor came in about 20 minutes later with tears in her eyes…” Gina’s voice trails off.
“Look how good I did,” immediately chirps Liam, who has been busily coloring, yet has not missed a word of his mother’s recount of that day.
“Oh my goodness, you’re putting a lot of details on there,” Gina says, proudly admiring her son’s work. “I like it.”
She collects herself and returns to that day in the doctor’s office. “She came in with tears in her eyes and said, ‘I’m going to pray for you.’ And I thought, ‘When the doctor leaves medicine behind and goes to religion I know I’m in trouble,’” Gina recalls.
Assuming that Liam had leukemia, the physician referred Liam to an oncologist and then handed Gina a business card. “She said I could call any time, day or night,” Gina says. “So that told me we were really bad off.”
The oncologist ran tests and immediately ruled out leukemia, so he told the family it must have been a virus after all. But after further testing, joy turned to utter shock when the phone rang at the Reiniers’ house two weeks later. The oncologist said Liam had something that was worse than leukemia.
What Liam had is myelodysplasic syndrome (MDS). The name comes from myelo (dealing with bone marrow) and dysplasia (the proliferation of abnormal cells). It is a blood cancer so rare that most people have never heard of it. The cause is unknown, although a genetic component exists. MDS can give the appearance of leukemia.
“When he called, the oncologist said that genetic studies revealed Liam was missing a chromosome that is a big indicator of MDS. I was trying to write all this down while I was on the phone,” Gina says. “And he said, ‘This is very serious; I have very bad news for you.’ But I was still thinking, ‘It’s OK, we can do this.’ I asked, ‘This is survivable, isn’t it?’
“And he said, ‘No. Not really.’
“I said, ‘What? Not really survivable?’ And he said, ‘No.’ That was the end of the phone call, because I had no ability left to talk.”
Well-meaning doctors in Iowa gently urged Gina and Jeremy Reinier to accept that Liam was not going to grow up.
“At home we were told that we should wait until it progressed into leukemia, because it often does, and that we might as well get all the good days out of him that we could and say goodbye,” she says.
Just a phone call away
Determined not to give up, Gina sat down at her computer and found St. Jude.
“St. Jude was the only place I could find that talked about MDS being survivable,” she says. “I told my doctor I wanted to take Liam there. He shrugged and said we could do that if we wanted to, but he really didn’t see what good it would do.”
Gina takes a deep breath. “And then we came down here, and the doctors were very positive. There definitely is a mortality rate with this—it’s a very serious disorder and requires a bone marrow transplant. But we went from being told ‘that was it’ to ‘here’s how we can help you.’ I know the word ‘hope’ is used so much that it’s almost overused, but they gave us hope, and we really didn’t have any when we came down here.
“We looked into a couple of other places, just to make sure. Some of them promised higher success rates but they couldn’t give me any reasons why; they couldn’t give me any statistics to back it up. And it really felt like a sales campaign. They seemed to like that he had a rare disorder because it was a new number for their books. But at St. Jude, that didn’t seem to be the case. They knew me by name, they responded to my e-mails, they would call me on the phone, and it really was how they could help Liam, not how Liam could help them,” she says.
Life on the line
At St. Jude, Liam’s doctor, Greg Hale, MD, is interim chief of Bone Marrow Transplantation. “MDS is a malignant disorder in which bone marrow cells grow abnormally, so that they don’t become the normal cells that carry oxygen, clot the blood or fight infections,” he explains. “Most people who get MDS are elderly—it’s quite rare in pediatrics. In Liam’s case, studies identified monosomy 7, which means part of the DNA on chromosome number 7 was missing.”
Liam’s only hope was a bone marrow transplant, and he came to the right place for it. One of the largest pediatric transplant centers in the world, St. Jude has been named a Center of Excellence by the MDS Foundation. In Liam’s case, family members were not close matches for him, so an unrelated donor was selected. The only thing the family knows about the donor is that she is a 21-year-old female, somewhere out there in the world. A year from now, if they wish, Liam and his donor can exchange personal information. Gina hopes to do that—so she can say thank you.
Whoever the donor is, she gave a piece of herself to Liam, and now her healthy blood cells are taking over and fighting Liam’s diseased blood cells. That’s the good news that Hale called to tell Gina.
“When he called me, I was lying on the couch, holding the phone to my chest,” Gina recalls. “I really thought we were going to stay here for another transplant. But when he said, ‘You can go home,’ my heart just about leaped out.”
For the next year, she and Liam will journey from Iowa back to St. Jude every month for bone marrow studies and testing.
“At the end of his first year of transplant, he will undergo a complete re-evaluation, including bone marrow studies,” Hale explains. “MDS can be hard to follow, so we have to look carefully.”
In the meantime, the Reinier family strives to resume a normal existence. For Liam, that means a return to his room, his friends, his video games and the ability to eat restaurant pizza again for the first time in months. For Gina and Jeremy, it means they can enjoy every day with their energetic little boy, while at the same time, finally daring to hope for his future.
Reprinted from Promise magazine, Autumn 2006
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