instead of six

Physicians advised the Hausers, who live in Harriman, to expect a post-transplantation hospital stay of six weeks. But Eric Thomas did so well that he spent only four weeks there as his doctors and family monitored his progress and recovery.

Eric Thomas clearly understands the significance of what happened to him.

“Mr. Blood is not sick anymore,” he said earlier this week. “I’ve been in the hospital and I got some blood from my sister.”

While many people never find a suitable bone marrow donor, Caitlin, a second-grader at Pine Tree Elementary, was found to be a perfect match last October. Physicians suggested waiting until after Christmas to perform the procedure so Eric Thomas could enjoy Christmas at home, said his mother Christine Hauser, “because Christmas is so important to him and the doctors felt it was emotionally important for him to have that holiday at home.”

When pre-transplant chemotherapy began, Hauser said she felt a “feeling of relief” because the process started. But the “intense round the clock chemotherapy” made Eric Thomas sick with severe side effects. He also needed to be kept in isolation because the chemotherapy was destroying his existing immune system.

“It was scary,” she said. “No parent ever wants to see their child go through this. He had been through so much. One of the things kids say is, ‘keep on keeping on.’ You have to keep going on. Sometimes when he was throwing up and I was rubbing his back he would say to me, ‘mom, give it up.’ Both my kids are very spiritual and that meant he was telling me to ‘give it up’ to prayer, meaning it was going to be okay. ”

When the bone marrow harvesting day arrived, Caitlin’s procedure was done in the morning. That evening, the processed marrow cells had been delivered back to the Westchester hospital. Hauser and husband Eric were on hand to witness the transplant, which was “remarkably simple,” she said, “it was in a bag, just like if you receive blood, and it’s on an IV pole.” She recalled what one of her son’s hematologists, Dr. Oya Tugal, told her.

“I had been sobbing beforehand,” said Hauser. “There were so many emotions. But Dr. Tugal had a snap out of it attitude. She grabbed my shoulders and looked me straight in the eye. ‘This is your son’s cure,’ she said, ‘this is his cure.’ She made me look at the marrow. I knew it was finally going to be okay. We had made it that far.”

Eric Thomas spent the next four weeks in further isolation as physicians and family waited to see how he would react to the transplant. In simplest terms, after the transplant, it takes some time for the donor cells to make their way to where they need to be within Eric Thomas’ body. There were some issues about possible rejection, but otherwise no major complications. Feb.11 was his “busting out day,” said Hauser, where he no longer needed to be in isolation. At the hospital, family and medical staff celebrated with a party. He was discharged on Feb. 13.

‘Thank you’

Now hanging out at home with his beloved Thomas the Tank Engine trains and tracks, Eric Thomas said he was happy to be home and glad that his sister’s bone marrow helped him.

“I got it from the IV pole, where all the medicine was,” Eric Thomas said. “It was my sister’s blood. I slept right through it but there were about a dozen people in the room.” He’s looking forward to going out every day and “racing around.”

Caitlin was also pleased she could be his donor.

“He was sick and I wanted to help him,” said Caitlin. “He was crying a lot. It’s good thing to do to help people.”

“You’re still a bottlehead,” Eric Thomas said, interrupting Caitlin’s comment.

“See?” she said, clearly exasperated. “That’s not so pretty.”

But Christine Hauser said what’s great to see is Eric Thomas “so close to being his normal self. We’re weaning him off steroids, and there’s some challenges with that. He still has no hair and his face and body are still bloated.”

What was interesting to the Hausers but not unexpected to physicians was that Eric Thomas developed his sister’s allergies and has even taken on some of her personality traits.

“We noticed that at the end of the first week,” she said, with a laugh. “We’re seeing the same ‘drama queen’ type stuff and the quick temperament. I really don’t like having two drama queens, yet I’m happy to have it.”

Over the next two years, Eric Thomas’ immune system will continue be compromised. This fall, he will begin kindergarten at Sapphire Elementary School in Harriman. Beginning next year, he’ll have to be re-immunized with all the shots he had as a baby. And he can’t be around people who are sick.

Hauser said she feels her family is very blessed to have Caitlin be the surprise perfect match donor and to have such a good outcome for her son.

She feels equally blessed to have so much community support during these recent months.

“I just want to say thank you,” said Hauser. “Everyone …people we know and people we don’t even know … they have given us a tremendous amount of support. We couldn’t possibly express just how grateful we are.”

WHAT IS Hemophagocytic lymphohistiocytosis?

• HLH is a rare immune system disorder affecting primarily infants and children.

• The disease usually presents with fever and sometimes other symptoms of an infection. In many cases, a pathogen can be identified. The body contains many cells, including T-cells and histiocytes that fight infection. The activation of these cells causes an inflammatory reaction in the body. Normally, when the pathogen has been eliminated, the inflammatory reaction is turned off, and the immune system returns to its steady state. In HLH patients, due to defect of the immune system, the inflammatory reaction persists and causes the symptoms of HLH.

• HLH occurs either on the basis of a genetic defect or as a secondary form with underlying diseases such as infections, cancer, or rheumatic diseases. In the primary form, also known as familial hemophagocytic lymphohistiocytosis, defective genes are inherited from both the mother and the father (autosomal recessive inheritance). A persistent cure can only be achieved with bone marrow transplantation.

• Infections can trigger both the familial and the secondary disease. In cases of secondary HLH, a condition of temporary immunodeficiency seems to contribute to the development of the disease.

Source: The Histiocytosis Association of America

REACHING OUT TO HELP OTHERS

One of the many things Christine and Eric Hauser learned over the course of Eric Thomas’ treatment is that there’s little information available on HLH.

They’d like to create a Web site which would serve as an online support group for parents of children with HLH. Because the numbers of kids are so small, they’re looking for ways to reach out to anyone dealing with this disease nationwide.

The Hausers admit they are technologically-challenged about how to proceed with such an undertaking. If you can help them with your time, talent and knowledge to create the yet-to-be-named site, the Hausers would welcome your assistance.

Contact Christine Hauser at cmhauser03@yahoo.com.

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