Mixed race leukemia patient recovering at home

Baylor Fredrickson with mother Shari Nihei Fredrickson. photo by Darren Yamashita

After months of hospital treatments and a second transplant, 8-year-old leukemia patient Baylor Nihei Fredrickson has been released from the hospital and returned home on Oct. 31.

Baylor’s mother, Shari Nihei Fredrickson, said he continues to recover at home while on IV fluids and more than 15 medications.

“I think one of the things he’s learned while being in the hospital is to not get his hopes up too high,” Nihei Fredrickson said in one of many updates she posted on Baylor’s Facebook page, A Match for Bay – Rally4Bay. “He knows things can change in a minute.”

Baylor, who is of Japanese and German descent, underwent a cord blood stem cell transplant on July 30, but the transplant failed. One month after the transplant, Nihei Fredrickson updated Baylor’s Facebook followers with the news that no donor cells were found present in his body. Upon this discovery, Nihei Fredrickson and her husband began preparations for a haploidentical transplant, in which one of the patient’s parents becomes a donor.

Test results determined that Baylor’s father, Rob, was the best match for Baylor because they share an important individual marker. Then, preparations for Baylor’s second transplant began, which included another round of chemotherapy and doses of radiation treatments.

In between transplants, Baylor endured a number of health complications, including a fungal infection in his lung. He had surgery to remove the top-right lobe of his lung and a chest tube was inserted to drain unwanted fluids.

Following the lung surgery, Baylor was monitored closely for risk of additional infections and other post-surgery complications while his body still had no white blood cells. The haploidentical transplant took place on Sept. 23.

About two weeks later, Baylor developed symptoms of graft-versus-host disease, in which the transplanted donor cells attack the recipient’s cells. He developed a skin rash and puffiness from water retention as well as nausea and diarrhea. He began treatment with small doses of steroids.

Nihei Fredrickson said post-transplant days have been stressful.

“Not knowing if what we are seeing is this or that, what he’s experiencing might be something or nothing…it’s all very frustrating and grey,” she said.

Then, after almost 40 days after the transplant, Baylor returned home. In addition, they also learned that Baylor’s cells are 100 percent engrafted, meaning he has 100 percent of his father’s donor cells.

While at home in Albany, Calif., Nihei Fredrickson said her son attends weekly out-patient appointments while taking lots of medication. He also endures many safety measures, including wearing masks and a full body of sunscreen while he’s outside, avoiding crowds or sick people and eating a special diet while his body rebuilds its immune system, a process that can take almost one year.

Baylor’s days are spent relaxing, watching TV, eating homemade meals and sleeping without disruptions, which has been “pure bliss” according to Nihei Fredrickson. He said he also misses the nurses a lot, who showed him a lot of love and care during his stay at the hospital.

Nihei Fredrickson continues to post bone marrow drive information on Baylor’s Facebook page, encouraging his followers to register as bone marrow donors with the Asian American Donor Program. According to author Michael Lewis, more than 31 million people read his initial Facebook post about Baylor “when Facebook stopped counting (the views)” and AADP received requests for 7,000 home kits.

For more information on how to register, visit http://www.aadp.org/learn/how-to-register.