Josh and Erica Nijenhuis will be spending a lot of time at Sick Kids Hospital in Toronto over the next few weeks, and they grudge it not.
Erica Nijenhuis explained the Fergus couple’s daughter, Andrea, 9 months, will be there for five to eight weeks for a bone marrow transplant. It is the only medical procedure to save her life.
Andrea suffers from Hemophagocytic Lymphohistiocytosis (HLH for short), a genetic affliction that is not only very rare, but also very severe. It is caused by a strong over activity of some specialized cells within the body’s immune system.
As Andrea’s mother, Erica, puts it, “It causes the white blood cells to be overactive – and they eat the body.”
The family found out at the end of October Andrea had the affliction.
They immediately began searching for a bone marrow donor and match on onematch.ca, a Canadian registry of donors willing to help people like Andrea. The family is well aware of the need for speed.
Erica said that the couple’s oldest son, Hendrik, 1-1/2 years old, died of HLH in September after there was no donor to be found for him.
She said the hospital does the search for donors, and found no matches in Canada for Andrea. However, it did find an international match.
“We don’t know,” Erica said when asked who the donor is. “They don’t tell us.”
She added, “It took about six weeks to find a match.”
Literature from McMaster Children’s Hospital states the cause of the over-activation of cells in the body is either an acquired alteration or inherited.
In the case of the Nijenhuis family, Josh and Erica are both carriers, and Erica said they have learned any other children they have will have a 25% chance of having HLH.
Erica said Andrea will be in the hospital from five to eight weeks, until doctors know that the transplant is working.
“I will be staying their during the week with my mom,” she said, adding that Josh, who works in computers, will be visiting on weekends.
But there is more than just the transplant for the family to deal with. Erica said they have torn up all the rugs in their house in order to make sure Andrea is healthy.
Rugs can be a haven for bugs and viruses, and it is vital Andrea not catch any illnesses before the bone marrow transplant, nor for at least a year afterwards, when she has to spend time recovering, getting her health back, and building up her immune system.
“We’re thinking of getting a special filter on the furnace,” Erica said, explaining that would help provide better air.
Bone marrow and cord blood transplants are a life-changing treatment for people with leukemia, lymphoma, and many other diseases.
When patients learn they need a transplant, they turn first to their families to find a donor. But 70% of those patients are unable to find a suitable match in their family. They depend on bone marrow or cord blood donors from around the world.
Ironically, said Erica, Germany has the highest number of registered bone marrow donors.
It was started by Hitler, and turned to good use instead of evil. The registry today shows over 12-million donors worldwide, and 3,380,527 of them are from Germany.
