NORFOLK, Neb. (AP) - Phyllis Glaser knew something was wrong with her son, Jonathan.
Late last year, the usually energetic 7-year-old started to wear out easily.
“He would have his moments where it was hard for him to keep up with doing the normal kid things, but he’s still able to be the kid, still play and do all of those fun things,” she told the Norfolk Daily News (https://bit.ly/1iNKQbb). “He just didn’t have enough of the energy that he had before to be able to keep up with everybody.”
Glaser, and her husband, Monte, also noticed the large amount of bruises Jonathan had on his body. At one point, they counted 23.
“We knew he would wrestle around with his brothers and have fun, but to have 23 bruises, that’s not right,” Glaser said.
After having Dr. Dan Blomenberg examine him, he diagnosed Jonathan with aplastic anemia and was sent to Children’s Hospital in Omaha on Dec. 27. With aplastic anemia, the bone marrow - which produces red and white blood cells, as well as blood platelets - quits working.
He spent three days at the hospital, which is a lot shorter than the six weeks they could have spent there, Glaser said. Since his diagnosis, Jonathan has to get blood work done weekly, as well as blood transfusions.
“He has been an absolute trooper,” Glaser said. “His sense of humor has gotten him through all of this.”
One procedure that could greatly help Jonathan was a bone marrow transplant, Glaser said. Everyone in the family got tested for a possible match - Phyllis, Monte, sister Allison, 13; brother, Andrew, 12; and brother, Evan, 10.
Evan turned out to be a match. Glaser was hesitant on how to inform Evan, but Jonathan did the work for them.
“He went over, all excited and said, ’You’re my match,’ ” Glaser said, adding that Evan was ready to do it. “It was just something he wanted to do. He wanted to help his brother.”
On March 13, Jonathon was admitted to the Nebraska Medical Center to undergo intense chemotherapy treatments to completely wipe out his bone marrow. The bone marrow transplant followed on March 19.
Evan, she said, became slightly nervous the day of the procedure, but his father reassured him. Glaser said Evan was poked a number of times to get the bone marrow out, which made him really sore.
“Jonathan was joking around, saying, ’You look like a grandpa now,’ walking around because he was so stiff,” Glaser said.
After a two-week waiting period, the bone marrow transplant has been deemed successful as Jonathan’s body is beginning to produce red and white blood cells and platelets. He’s also seems to be feeling better, although he still tires easily.
“At this point, he’s producing bone marrow and the other cells, but there’s always that possibility of him rejecting it. He’s taking a lot of medicines to help with the process so he doesn’t reject it,” Glaser said.
Once he gets home, Jonathan will have restrictions, Glaser said. He will have to avoid large crowds and stay out of the sun as much as possible, or wear sunscreen and hats.
“Because of the medications he’s on, he can burn easily,” Glaser said. “And, I guess a lot of sunlight can trigger graft versus host disease, which is where he can reject his brother’s bone marrow.”
He also can’t go swimming due to his central line and camping may be limited this year, Glaser said.
For the time being, Glaser and Jonathan remain in Omaha, and expect to stay for about another two weeks to ensure he doesn’t reject the bone marrow, as well as monitoring cell and vitamin/mineral levels. Plus, if Jonathan would get an infection, it’s better that he’s close to the hospital since he doesn’t have a high level of white blood cells.
Making the stay a little easier is the staff and Child Life specialists at the Med Center.
“They are awesome,” Glaser said. “They had a whole bunch of hands-on activities that kept him entertained and busy.”
Her family and friends, and the Christ Lutheran School community - where the Glasers attend school - also have been a huge help, Glaser said.
“I would like to thank all of our family and friends at home that are helping with the kids,” Glaser said.
Parents at Christ Lutheran have started a meal train, providing two meals a week Monte and the other three children. The teachers, Glaser said, have allowed students to do FaceTime with Jonathan during the school day. The students also sent Jonathan a basket filled with activities, books, games and home-made greeting cards.
“It’s not just a school, it’s a second family for us,” Glaser said. “It’s a great community of parents and family and teachers and kids. I’m very grateful for everything they’ve done back at home.”
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Information from: Norfolk Daily News, https://www.norfolkdailynews.com
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