For DeeDee Comardelle, finding out she was having twins was like having an out of body experience.
“It was a shocker, but twice the love,” Comardelle recounted when she first learned two babies were coming. “I love having them. I wouldn’t trade it for the world. They really are a lot of fun and they will get even more fun when they get older.”
And it’s Comardelle’s every intention to see Demi and Daelyn grow up although another shocker soon followed after their birth nearly seven months ago.
Daelyn was recently diagnosed with an extremely rare condition called HLH (hemophagocytic lymphohistiocytosis).
It’s a cancer-like condition that causes her immune system to make cells hyperactive and then they attack all cells. It compromises her immune system and typically has symptoms within months of life, including fever, an enlarged liver or spleen, lowered blood cells and neurological abnormalities.
Since the diagnosis, she has required steroids, blood transfusions and chemotherapy.
At seven months old, the baby is fighting for her life.Comardelle said it began when her daughter developed a fever about seven weeks ago but had no other symptoms so she thought it was a cold. Six days later with some aspirin, she got better. Two more weeks later, Demi had a little cough and Daelyn’s fever returned, but it appeared to be from an ear infection.
When antibiotics didn’t work, she became concerned.
“I have this gut feeling something is really wrong,” said Comardelle of becoming anxious that something might be wrong with Daelyn. “I’m driving myself insane.”Daelyn’s condition worsened.
The baby was in pain and didn’t want to be touched so Comardelle called the nurse and they agreed tests would be done the next day. By that afternoon, the results were in and she was told to rush her baby to the hospital. Her platelets were extremely low (150,000 is normal), but the child’s count had gotten as low as 5,000.
“While in the waiting room, she releases blood in her diaper – a first,” Comardelle said. “My mother is yelling, ‘Get somebody,’ and medical staff rushed in.”
Comardelle said she’s still amazed over how incredibly fast they worked to treat and run tests on Daelyn.
“This is the hardest thing I’ve been through,” she said weeping. “The first week in the PICU is a complete blur.”The twins’ aunt, Erica Comardelle, said she rushed to the scene.
“Nothing was stopping me from seeing her,” Erica said. “And when I got there, I saw a infant laying in a bed and she just looked so exhausted from everything even at 6 months old. I remember the hematologist [blood specialist] telling me and her ‘Mimi’ while we were there the last step would be a bone marrow test.”
They didn’t think it would get to that point, she said. But that soon changed, too.
Comardelle said, although doctors thought the baby had a GI problem, they also suspected it was HLH but that wouldn’t be known until a multitude of tests were done. In the meantime, the child is getting constant transfusions, and platelets to keep her stable.
By May 23, a bone marrow biopsy confirmed the problem – Daelyn had HLH.
“I always thought to myself when watching movies or hearing other parents going through something like this – having a sick kid – I couldn’t imagine going through something like that, but here I am,” Comardelle said. “It makes you stronger than ever because you’re going to make sure she gets the best treatment possible.”
But Comardelle is relieved they caught the problem early, although she’s never heard of this before.
“They’re still doing tests to determine if it’s a genetic thing or caused by something else,” she said. “It’s fairly new. They’ve only discovered this disease in 1985. They know how to treat it now, but it’s very difficult to understand.”Erica Comardelle agreed the need and want to understand the diagnosis.
“We all Googled and learned about it very quickly,” she said. “And ever since then, I don’t think I slept a full night without crying.”
Pinpointing how Daelyn got the condition is important, which is why more tests are being done. Until then, she will continue with chemotherapy. Once in remission, she will need a bone marrow transplant, which could be done in about three months. If the HLH is genetic, then the rest of the family must be tested for it, too.
“I think it helps because they were fraternal, not identical,” Comardelle said of why Demi apparently doesn’t have the condition. “I think if it was identical, she’d be in the bed next to her.”
Until more is known about HLH and Daelyn’s condition, Comardelle said she’s documenting the experience, along with her older daughter Desiree, to show Daelyn what she went through.
On Saturday, they returned home from the hospital and will return there once a week to complete chemo treatments. The main concern now is infection, which means a fever this time qualifies as an emergency and a trip to the ER.
But Comardelle reflects on her strength, as well as her “little warrior.”
“It’ll still be a long road ahead of us. It’s a nightmare,” she said. “But I didn’t think I’d ever see my baby smile again and now she’s laughing and smiling again. I’m adapting to it.”
The family has set up an account for medical expenses at Capital One in Luling,
T-shirts are being sold to increase awareness about the disease at $20 each. To order a shirt, contact Desiree Jeffrey at (504) 418-3364 or text her name, address, size and how many shirts desired.
A blood drive for Daelyn is scheduled 10 a.m. to 3 p.m. July 15 at Walmart in Boutte.
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