Nicole Nelson Update - Slow Return To Normalcy
By RAY DUCKLER
July 24, 2008
Concord, N.H. - Nicole Nelson doesn't care if her 22-month-old daughter, Katie, drops crumbs on the carpet or hides crackers in her toys.
Let the crumbs fly, Nelson says. Bring on the crackers.
"I don't get uptight about that stuff," Nelson said. "I laugh now."
And why not?
When you've been diagnosed with aplastic anemia - a rare disease that prevents your bone marrow from producing stems cells - and you fear you won't see your daughter grow up, and you can't find a marrow match to save your life, and you've slipped into a coma for three weeks, and your family was called to the hospital to say goodbye, and now, finally, you're on the road to recovery, then crumbs seem like, well, crumbs.
"It's all about perspective," said Nelson's husband, Rick, a cop in Peterborough.
We first met Nelson, a 35-year-old physician's assistant at Concord Hospital, last October, one month after she was diagnosed with a disease that destroys the immune system and saps patients of their energy.
We reported that several bone marrow drives were held, including one at Concord Hospital that attracted 1,000 people.
We learned that ancestry plays a role in finding a match and that Nelson's American Indian heritage gave her a rare tissue type and reduced her chances of landing a perfect fit. Even a four-minute segment on MSNBC didn't lead to the right donor.
Then, after no match was found, we were told that doctors moved to Plan B, an umbilical cord blood transfusion. That's when a small amount of blood from the cord of a newborn, in this case an Australian baby born 10 years ago, is used to help the bone marrow produce its own cells, with no outside help, via constant blood transfusions.
It's not the ideal solution, but there was no other alternative after so much time had passed.
We pick up our story here. Nelson received a cord transfusion in February. She came home, then suffered from dehydration, so back to Brigham and Women's Hospital in Boston she went.
Then, in mid April, Nelson had trouble breathing.
"They're really not sure what happened," she said. "I had some sort of infection in my lungs. It was connected to me having a depressed immune system. They could never find out what I was infected with. I had a bad cough. I couldn't breathe."
She needed a ventilator to breathe, and she fell into a coma. Her kidneys later shut down, she was placed on dialysis, and surgery was performed to drain fluid that had formed near her heart.
Nelson was dying.
Rick and other family members were told to hurry to the hospital. They weren't told specifically why, but they knew. They spoke to Nelson, hoping a few words would slip through into her mind.
Rick wrote "scared" in his journal.
"I'd step out of the room and doctors would say, we need permission to do this, we need permission to do that," Rick said. "They could have been speaking a foreign language. I'd try to explain things to family and friends on the phone."
Nelson awoke after three weeks, for reasons unknown. She couldn't walk, since her leg muscles had degenerated. After a week or so of rehab, Nelson returned home, and, slowly, it's been good news ever since. She's making her own cells now.
How well is Nelson doing? She reports that one of her doctors, who rarely injects emotion into a diagnosis, had this to say about Nelson's comeback recently:
"I'm very pleased," Nelson said her doctor told her.
Nelson has lost weight, sure, but she no longer needs a walker, she can move up and down the stairs, and she watches Katie play out back, in the little pool, in the sandbox and with the big beach balls.
Nelson isn't supposed to travel often, but she went grocery shopping with her mother recently. She wore a mask and gloves. She stayed home when Rick brought Katie to Rolfe Park.
"The doctors want me to limit contact with other people until I reach my one-year mark of my transplant," Nelson said. "I'm still pretty tired. I don't have a lot of stamina, but I'm working on it."
She doesn't know anything about the Australian baby whose cord blood, frozen since 1998, saved her life. There's no information available.
"I might start talking like an Aussie," Nelson said.
There was no trace of a down-under accent this week, nor was Nelson hopping like a kangaroo. That'll come later, when her strength returns.
Katie, her forehead warm from the flu and her cheeks red, wasn't right on this day either. She snuggled up to Rick, looking for comfort. Nelson's lengthy hospital stays the past year have forced her to miss segments of Katie's development.
"I've come home and she's not a baby anymore," Nelson said. "She's a little lady. When I went in, she ate with her fingers, and now she eats with a fork and spoon."
She still needs work with those crackers, however.
And Nelson doesn't mind a bit.
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