One local mom fought doctors, school boards, and community ignorance to be the voice for her son in his time of need.
Colleen and Tenzin Tanaka, a mother and son, are making strides against pediatric cancer in their school, community, and on Long Island as a whole.
Nine-year-old Tenzin was diagnosed with Leukemia in June of 2022 after presenting with symptoms that were erratic and seemingly unrelated.
After complaining of lower back pain, nausea, and other major symptoms, Tenzin was tested for COVID, diagnosed with the flu, tested for different allergies, suffered from an ear infection, and even told by a pediatrician that he was “being dramatic and should go back to school’ according to Tenzin’s mom.
Advocating for her son came natural to Colleen, despite doctors’ misdiagnoses and cruel words.
Colleen was sick with worry and brought Tenzin to every doctor she could. An allergist, an ear, nose, and throat doctor (ENT), a pediatrician, the ER, but nobody did the blood work needed to rule out cancer.
“I guess nobody wants to jump to cancer,” says Colleen. “But he did have cancer, and his white blood cell count was 500 more than what it is supposed to be. It was just that bad.”
Tenzin, who is wise “beyond his years”, according to Gary Bodenburg, a community friend of the family, was aware of the severity of his illness before even being diagnosed.
Colleen told The Messenger “In the car on the way to the hospital, Tenzin says to me ‘Mom, what happens if I have cancer?’”
Colleen was appalled at the suggestion and inevitable foreshadowing of her son. “That is ridiculous, you are an eight-year-old boy, you do not have cancer.” For many of us, including Colleen, the idea of childhood cancer is too horrible to imagine, and that diagnosis for your own child is unimaginable.
Unfortunately, for Tenzin and his family, that unimaginable nightmare became a reality.
Colleen is raising her two sons, Paxton and Tenzin, at her home in Port Jefferson Station. They moved to the school district just months prior to Tenzin’s diagnosis in June. Because of this, Tenzin did not have the opportunity to be as involved in his school and make new friends as he would have liked.
“My kid’s not in school, but he has a class. So, his little name was on the door, but nobody knew who he was,” says Tanaka. This isolating situation for the Tanaka family became the motivation for community-wide awareness. “It took me like two months, and I kept drafting up this whole thing. I finally decided to go to a board meeting, and I spoke in front of them.”
Colleen explained to the board how she wanted her son’s name to be known in his community, and how she and her sons needed the support of the school and the community. “I wanted to use the community to try and get together and do things for the hospital because I saw gaps in the resources at the hospital, and I just didn’t understand why, as a community, we weren’t jumping on board with this.” Colleen was overwhelmed and frustrated by the lack of awareness for pediatric cancer. “What I had said to the school [board] is I was really disappointed that September, which is Pediatric Cancer Awareness Month, has come and gone and you have a brand-new child in the district going through it, and a sibling who is distraught and nobody did anything.”
The minute Colleen took to the School Board, she was overwhelmed by the response from her community. “I think the community was then really put on notice, like they didn’t know, they really truly didn’t know… and you could tell, they were outraged.”
Soon enough, neighbors, classmates, and families of the community knew Tenzin’s name. “Team Tenzin” bracelets were bought and worn with pride and raffles and fundraisers were planned to raise money for pediatric cancer research.
However, the most helpful of all was the influx of supportive words for the Tanaka family.
“So many people were coming out of the woodwork, and it was really, really nice,” says Colleen. “It just feels good to not think ‘this is happening, and nobody understands what it’s like.’”
The school PTA put together a Comedy Night for Tenzin last March, which not only raised important funds, but provided a sense of togetherness. People from all over the island attended the event to show their support.
“We did find out that, at the same time, there were multiple children that were battling this, that the families just didn’t want to be identified, which is totally fine. We could’ve done other things for these families without having to identify them.”
A friend of the family who has been by the Tanaka’s side says it is all about getting the word out there. “I know it’s a buzzword, I know it’s cliché, but it really just comes down to awareness.”
Throughout an isolating time, all the Tanaka family truly needed was support. A community who could put a hand on their shoulders and say, “we are here for you.” Collen now creates this type of community for others through her online blog and support group, leukemiamom.com.
Through leukemiamom.com, Colleen posts a multitude of resources, events, and words of encouragement all on one website. She found resources difficult to come by and uneasy to obtain while in the midst of her son’s diagnosis. Weighed down by grief and worry, Colleen was strong enough to conduct the research to find instate national foundations and resources willing to help.
Now, the Tanaka family is involved with Taylor’s Hope, Corey’s Promise and Hockey for Hope, and returning the favor by hosting fundraisers for these organizations with the help of New York Wrestling Connection and BenchWarmers of Mount Sinai.
In addition, meal trains, a t-shirt fundraiser, and the outpouring of everyday items from the community helped keep Colleen’s home afloat during the difficult times.
Notably, Corey’s Promise is a foundation started in memory of Corey Phelan, a Long Island MLB prospect who passed away in October 2022 from a rare form of leukemia. Members of The Messenger family knew Corey personally and are elated to see the foundation in his honor helping young cancer patients who call Long Island home.
Tenzin is known to be an intelligent, friendly, and curious young kid who loves The Flash, Legos, Minecraft, and karate. Friends of the family attribute Tenzin to being a great kid wise beyond his years, and “truly an anomaly”. Taking his life-threatening illness with stride, Tenzin believes “God gave me cancer so that I learned how to appreciate things.”
Fortunately, Tenzin, now nine years old, is currently in remission and is proudly supported through his treatment by his big brother, Paxton and his wonderful mother, Colleen.
If you have the ability to spread awareness of pediatric cancer, show support to some beautiful organizations, or give aid to the Tanaka family please do so by visiting leukemiamom.com.
Additionally, a link to their GoFundMe account can be found here, Fundraiser for Colleen W by Catherine Diaz: Tenzin’s Fan Club (gofundme.com)
