Blaine toddler to donate bone marrow to older sister

One-year-old Cayden Brynteson, Blaine, dressed up as Superman this past Halloween. Cayden will be a real superhero for his three-year-old sister, Addison, because bone marrow from his body can help save his older sister’s life.

April and Joe Brynteson of Blaine received bad news from doctors Sept. 7 when their daughter Addison, 3, was diagnosed with aplastic anemia. Her 16-month-old brother Cayden will be able to donate some of his healthy bone marrow to help save his sister’s life. Photo by Eric Hagen

April and Joe Brynteson of Blaine received bad news from doctors Sept. 7 when their daughter Addison, 3, was diagnosed with aplastic anemia. Her 16-month-old brother Cayden will be able to donate some of his healthy bone marrow to help save his sister’s life. Photo by Eric Hagen

Addison was born Feb. 27, 2009. Her parents Joe and April Brynteson said she loves to be outside, enjoys reading, putting together puzzles, playing with her jewelry and spending time with her little brother.

The Blaine family was hit hard by bad news Sept. 7 when Addison was diagnosed with aplastic anemia, which is a bone marrow disorder that prevents her body from producing enough blood cells.

Addison’s white blood cells are at such a low count that any infection or the common cold could have been deadly. Her red blood cells and platelets counts were also low, but transfusions have helped, her parents said.

April and Joe pressed doctors for the cold, hard truth and were told that if Addison did not receive a bone marrow transplant, she may not make it to her fourth birthday.

Joe said the severity of the news took some time to sink in. April was initially relieved because she worried Addison might have leukemia, but that relief went away when she learned more about aplastic anemia and what would be needed to keep their daughter alive.

The first step was to find a bone marrow donor. Cayden was a natural choice because the success rate could be about 90 percent with a sibling donor and about 50 percent with an unrelated donor, doctors told them.

Cayden had to be tested to ensure he does not have aplastic anemia as well. His parents learned Friday (Nov. 16) that Cayden is perfectly healthy and able to provide the bone marrow transplant.

“That was the last piece of the puzzle,” Joe said.

Although a huge weight was lifted off their shoulders when they got this news, there are trials ahead for the family. Chemotherapy will kill Addison’s existing marrow before some of Cayden’s healthy marrow is transplanted to her.

While Addison’s body is producing new blood cells, she must be as isolated as much as possible. Her parents will be allowed to visit, but Cayden is supposed to stay away.

Joe and April are waiting to begin this process until after Thanksgiving so they can spend the holiday together. They will do what they can to get everyone together for Christmas.

They have already skirted around doctor’s orders before, they admitted. They were told that Addison should not go trick-or-treating this year, but she had talked about being Cinderella for months, so they ignored the orders and took Addison and Cayden out so they could be kids for an evening.

After all, Addison had already lost some of the fun of being a kid. One of the first things her parents had to do after she was diagnosed was hide her bicycle so she would not injure herself.

She has to wear a mask any time she wants to go outdoors so she does not pick up any airborne diseases. Her parents could no longer take her to day care, so Addison’s grandparents have watched her when both parents are working. April is a school teacher and Joe is an assistant manager at Radco Truck Accessories in Blaine.

The changes have been hard and confusing for Addison, her parents said, because she does not feel sick.

Addison and Cayden will be at the University of Minnesota Amplatz Children’s Hospital for the transplant procedure, and Addison will likely have to stay there a couple of months while waiting for her body to produce new blood cells. After leaving the hospital, she will still have to make daily clinic visits for a few months to make sure her body is accepting the new bone marrow.

The clinic visits can become less frequent, but it will be about a year before doctors can really tell if Addison is going to be fine.

While his parents talked, Cayden happily played with his Matchbox cars and Thomas the Train toy. Joe and April are looking forward to the day when their only two children are older and able to reflect on what happened to them when they were very young children.

Medical bills

The harsh reality of any story like this is that transplants and other medical procedures are very expensive and there is only so much insurance companies will cover.

The Blaine couple said the transplant alone is expected to cost about $60,000 and they have no idea what their insurance company will cover.

Their friends have stepped forward to raise as much money as they can. The first fund-raiser is Saturday, Jan. 19, 2013 at Mac & Chester’s SRO, 18919 Lake George Blvd. They are also contemplating a classic car show next summer, according to Aaron Sathre and Cheryl VanHorn.

They have already received help from strangers who saw the story on WCCO-TV and in the Pioneer Press. They went to downtown Minneapolis one day seeking donations for the silent auction on Jan. 19 and many donated items.

VanHorn received one call from a mother whose daughter was diagnosed with aplastic anemia when she was 13 years old. This girl is now in her 30s and has children.

This was wonderful news for Joe and April to hear because doctors told them that even with a successful transplant procedure, Addison would likely never be able to have children.

Addison Brynteson benefit and silent auction

•Saturday, Jan. 19, 2013 starting at 4 p.m.

•Mac & Chester’s SRO, 18919 Lake George Blvd. in Oak Grove.

•Tickets cost $15 for adults and $2 for children 12 years old and younger.

•Guests will receive pulled pork sandwiches, sides and beer. There will be live music and a silent auction.

•Individuals and groups that would like more information can call Cheryl VanHorn at 651-216-5548 or cherylvanhorn30@gmail.com.

Donations can be sent to the Children’s Organ Transplant Association at 2501 W. COTA Drive, Bloomington, IN. 47403. Checks should be payable to COTA with “In Honor of Addy B” written in the memo line. Credit card donations can be made online at COTAforAddyB.com.

Eric Hagen is at eric.hagen@ecm-inc.com

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