Toddler making strong recovery after bone marrow transplantThe toddler whose medical journey included a mercy flight on a Cirrus airplane is continuing a strong recovery after a bone marrow transplant, his mother said this week.
By: John Lundy, Duluth News Tribune
The toddler whose medical journey included a mercy flight on a Cirrus airplane is continuing a strong recovery after a bone marrow transplant, his mother said this week.
That makes things more chaotic at home, but in a good way.
“The better he’s doing, the crazier our day gets,” Ann Nord said in a telephone interview.
Caleb Nord, now 2 years and 3 months old, was diagnosed with a rare disorder of the immune system last May. As his parents, Ann and Jeremy Nord, and their doctors considered how to treat him, it was decided that he should see a doctor in Cincinnati. The doctor is one of only a handful of specialists on the disorder, known as Familial Hemophagocytic Lymphohistiocytosis V.
The Nords live in White Bear Lake, Minn., but an airline flight from the Twin Cities would have placed Caleb at risk of infection. And the steroids he was being treated with made his behavior unpredictable.
Bill King, vice president of business administration for
Duluth-based Cirrus Aircraft, learned about the situation from former Duluth Mayor Gary Doty, who heard about it from his brother, Ralph Doty. Ralph and his wife, Diane, had encountered Caleb’s grandmother, Rhonda
Peterson of Duluth, at a car wash and cookout to raise money to
defray some of Caleb’s medical expenses.
Cirrus provided the flight to Cincinnati, and the doctor’s consultation helped the Nords to decide on a bone marrow transplant.
The transplant took place without incident on Aug. 25 at University of Minnesota Hospitals. A 100-day checkup on Dec. 17 — a few days beyond Day 100 — was generally favorable. Encouraging milestones have followed. On Caleb’s Jan. 9 Caring Bridge page, Ann Nord noted that he needed a haircut for the first time since April.
Another change is his vocabulary.
“He went from saying maybe two words before the transplant to now he’s saying over 100 words,” Ann Nord said Wednesday. “It’s been a complete 180-degree transformation.”
There have been some difficulties. Persistent gallstones developed, and Caleb’s gallbladder was removed on Jan. 7. But the Nords were told that wasn’t unexpected, given that Caleb underwent two kinds of chemotherapy and went for weeks on TPN (total parenteral nutrition) instead of solid food.
All of those factors can cause gallstones.
Caleb still doesn’t have the appetite of a normal 2-year-old, his mom said, but he is maintaining his weight. He still has to be guarded from infection, so day care is out. Jeremy has returned to work, but Ann has had to stay home with Caleb.
But the prognosis is good, she said.
“The doctors all say he’s doing absolutely phenomenal,” Ann Nord said. “Every fever and every cold you worry. There’s always a small chance that it could come back. The doctor said we should watch for warning signs, but it’s nothing to lose sleep over.”