Minnetonka Middle School West student Max Fuecker has plenty to celebrate today.
Feb. 28 is Rare Disease Day, and nearly two years have passed since Max, 13, received a life-saving bone marrow transplant to fight severe aplastic anemia, a disease where bone marrow is nonexistent or stops making enough red blood cells, white blood cells and platelets for the body.
The incidence of this disease is two per one million people, said Max’s doctor Dr. Jakub Tolar, M.D., Ph.D., Division of Blood and Marrow Transplant in the Dept. of Pediatrics at the University of Minnesota.
In order to survive, those afflicted need a bone marrow transplant.
Max was fortunate – he found a genetic match within two weeks of his diagnosis.
That match? His younger brother Isaac.
“He was one of the lucky people who won the lottery in that it was a genetic match,” Tolar said. “You cannot do any better than that.”
Something’s not right
Max, a Chanhassen resident, was officially diagnosed with severe aplastic anemia in early February 2011, but he had been sick since the previous September when he had mononucleosis.
His mono progressed to autoimmune hepatitis, and the Epstein Barre virus that caused mono confused his body and his own immune system attacked his liver, said Max’s father, Dave Fuecker.
“After that was treated, the Epstein Barre virus further confused his body and his own immune system attacked his bone marrow,” said Dave.
Dave said he did not think anything was seriously wrong until late January 2011 when deep red bruises appeared on Max’s arms and legs, and striations of red dots showed up on his torso and legs.
“That’s the reason that we took him back to the doctor,” Dave said. “The reason for the bruises and red dots was that his did not have any platelets left.”
Max was diagnosed, and Dave said he took it the way any 11-year-old would. Max reacted with nervous laughter – knowing that it is something serious, but not understanding how serious it was or how it would be treated.
Less than two months after his diagnosis, Max received his bone marrow transplant from his brother Isaac, then age 9, on March 23, 2011.
“I don’t think that Max was creeped out specifically because his donor was Ike. I think he was a little weirded out just by the notion that something from another person would be inside of him.”
Dave said this has brought the brothers closer together.
“In the end, I think that they both think it is pretty cool to have that donor and donee relationship,” Dave said.
200 hospital visits
The disease prevented Max from doing what he loved – being outside playing sports and fishing – and kept him out of school for the better part of two years.
He rarely ventured out in public.
“All other activity ceased – no sports, no extra-curriculars, no swimming, no fishing,” Dave said. “For the majority of this time he couldn’t be in public places, crowds, outside on windy days for fear of infection.”
One place Max did spend plenty of time was the University of Minnesota Amplatz Children’s Hospital under Dr. Tolar’s care.
Dave said Max’s recovery has been long, but pretty smooth. After his initial one-month hospital stay, he has only required two additional hospital stays.
But, Max has had to visit the hospital more than a young boy should have to.
“In addition, I would guess that we have made about 200 hospital visits since his transplant stay,” said Dave. “Those visits have been [and] are for routine blood tests, transfusions, etc.”
Luckily, Dave said Max has not had any signs of rejection or graft vs. the host disease, and added that chemotherapy and anti-rejection drugs can have an adverse affect on a person’s internal organs.
Now, Max is on a strict diet and takes medications to offset his phosphorus imbalance.
“For the most part, Max is back to being a normal 13-year-old kid,” Dave said.
Now, Max plays basketball and is on the wrestling team and has integrated back all aspects of life, Dave said.
A special kid
Dave said that throughout this whole process, Max has never complained and has never said, “Why me?”
“Don’t get me wrong, when you are 11,12, 13 years old and not able to do anything, its tough, but Max has made it a lot easier than it should be,” Dave said.
Max leaned on his friends, family and has trusted Dr. Tolar and the Amplatz staff throughout his journey.
“Max has a great group of friends and a great extended family that would visit, Skype, send notes on his CaringBridge site,” Dave said. “I think that helped a lot.”
Even through all the side effects of the transplant and medications, Dr. Tolar said Max took it all in stride.
“He was very optimistic about things,” Dr. Tolar said. “Everyone gets a fever, sores in the mouth and chest. He handled all of these things very well.”
Dr. Tolar could sense how much Max’s family cared for him by how much they wanted to learn about his disease and their detail-oriented nature.
“This family handled everything very well, and really had a good energy about them,” he said.
The Fuecker family knows that without the incredible medical care Max received, Rare Disease Day would take on a much different tone.
“Dr. Tolar, the Journey clinic and Amplatz are an anchor in a really crappy storm,” Dave said. “Beyond that, their ability to communicate with Max and to the rest of the family has been impeccable. In short, Dr. Tolar and Amplatz, to our family and Max means Max’s life.”