By Chris Mellides
When a family member is diagnosed with cancer, the road ahead can be hard and uncertain. And when this diagnosis befalls a child, the situation appears even more dire. While it can be difficult for families affected by this disease to seek assistance, it is all the more meaningful when a community answers the call and comes together to offer its support.
At a Comsewogue School District Board of Education meeting Feb. 6, Colleen Tanaka, a care coordinator for kids with special needs and single mother of two, stood to address the room. She shared the story of her 8-year-old son, Tenzin, who in June 2022 was diagnosed with T-ALL leukemia. Tanaka’s eldest son, Paxton, has been attending school, though Tenzin has yet to do so since the family’s move into the district.
Tanaka said that when her youngest son began feeling unwell he was taken to see his pediatrician, an ear, nose and throat doctor and an allergist. Tenzin was originally diagnosed with parainfluenza virus type 3, which can cause a variety of respiratory illnesses and was in line with some of the symptoms he was experiencing. This would ultimately be determined as a misdiagnosis.
“He really was just very fatigued, not keeping down food,” Tanaka said. “They put him on medication and within two days he was vomiting water. The poor kid could not stand without wanting to pass out and his lips were just bloody and chapped.”
When Tenzin was admitted to the emergency room at Stony Brook University Hospital, the mother said that the doctor examining him was visibly concerned, immediately calling for bloodwork, followed by an X-ray to rule out the presence of any tumors, according to Tanaka.
Tenzin was officially diagnosed with leukemia on June 2 and was immediately admitted into the hospital for further treatment.
“I think the biggest thing is that this child went from being a typical 8-year-old whose biggest worry was getting up and going to school to, like, we almost lost him the first night,” his mother said. “He was that sick.”
One of the attendees at the Feb. 6 meeting was Joan Nickeson, who sits on the facilities and legislative advocacy committees at CSD. Nickeson sat directly behind Tanaka and, upon hearing the mother speak, described feeling as though “the planets aligned.” At the close of the meeting, Nickeson asked Tanaka whether there was anything she could do to help.
“I immediately asked if she had a Venmo account and donated some money because she revealed that she was a single parent,” Nickeson said. “When families are faced with these sort of diagnoses, often one parent in a two-parent family loses their income to care for their child, and she’s a one-parent income family.”
Tenzin’s story also drew the attention of the school board, including BOE trustee Rob DeStefano, organizer of the Terryville Volunteer Connection. Board members, along with the district’s superintendent of schools, Jennifer Quinn, spoke with Tanaka, offering supportive suggestions and well wishes.
“I felt like I moved into this district and nobody knew what was going on with our family,” the mother said. “It wasn’t until I went to the board meeting and then the outpouring started.”
DeStefano said that since learning about Tenzin and his family, he has noticed a massive response from the community.
“Hearing any of our neighbors enduring this challenge is initially a gut punch for sure,” he said. “But upon processing the situation, the response is to explore ways to assist and ensure they know they are not alone.”
As the organizer of the Terryville Volunteer Connection, DeStefano works with community members to help champion local causes. The goal of the group, he indicated, is to connect residents with causes that build pride and spread good throughout Long Island.
“The connection among our local residents, our schools and the students within is strong,” the school board member and volunteer organizer said. “We are a family of Warriors and that is once again proven by the awesome outpouring of support we’re witnessing here.”
As a local resident with three children attending Comsewogue School District, Laura Feeley took a creative approach to helping Tenzin and his family during their time of need, starting a district-approved T-shirt fundraiser that went live on Feb. 8.
The red shirts for sale are emblazoned with a yellow lightning bolt on the front, reminiscent of the logo worn by DC Comics’ The Flash, Tenzin’s favorite superhero. The back of the shirts bear the name Tenzin’s Fan Club.
Feeley said that there has been a fair number of T-shirts already sold, adding that she hopes the fundraiser will reach 200 shirts in the near future.
“I thought it would be a great idea to not only show moral support by wearing the T-shirts, but also raising funds,” she said. “I think people need to know how much mental, monetary and social strain it puts on not only the child but the whole family.”
Feeley added, “It’s a devastating disease and holds so many negative repercussions. This is why I think the shirts are a great idea — it’s showing the family we care enough about them to show it on our backs. Tenzin is a strong fighter who deserves all the support that we can give him, along with his family as well.”
A GoFundMe was created by a close friend of the Tanaka family at the time Tenzin was diagnosed. It has already raised over $16,500 as of March 7. The mother, while appreciative, said that the experience felt strange to her and that she wasn’t keen on the idea at first.
“It was a lot to process, but it was a saving grace because I was able to pay some of my bills at that point,” Tanaka said. “I’m very fortunate that I have people that know my situation, care about me and went out of their way to make sure that in that time there was something in place because I don’t know what I would have done.”
In addition to the GoFundMe page, a program through Meal Train was created for Tanaka’s family, which the mother is grateful for and helps her take her mind off of cooking for her children after sometimes spending all day at Stony Brook Cancer Center where Tenzin receives his outpatient care.
Asked about her experience with Meal Train, Tanaka expressed her appreciation for the service. “It’s almost like a website that gives a little information on the family and people can go on there and pick dates that they either want to cook a meal and bring it to us, send a meal or donate money,” she said.
A great kid
Tanaka said that while Tenzin is currently on a feeding tube and undergoing chemotherapy, his medical team has recommended that when the third grader feels hungry he should eat.
The mother said that her son’s favorite place to eat is at Applebee’s and that she has lost count of the number of times she’s had to make Uber Eats and DoorDash orders to be delivered to the hospital. Later, Applebee’s became more involved with the family and has even pledged to donate Tanaka a meal each week while Tenzin is receiving care.
“I guess one of the PTA moms or somebody had reached out to Applebee’s and told them that this kid loves it,” Tanaka said. “And they had given us a couple of gift cards and things. So, we actually went there and he got to sit and actually eat there. I know it sounds crazy, but to him that was the best part of his day.”
When asked to describe her son, Tanaka was forthcoming. “He is quite the individual,” she said. “Tenzin is very headstrong, determined and he’s always been that way.”
Tenzin’s mother added, “He’s very into Minecraft
and Lego building. He’s probably one of the kindest 8-year-olds I’ve ever met — just very empathetic, always thinking of others before himself. He’s just a great kid.”
Quinn conveyed just how welcoming the district has been to Tenzin, despite him being a newcomer. She also noted how endearing the community has been in assisting him and his family.
“I can’t express how proud I am to live and work in a community that is always so willing and able to step up and help anybody when they’re in need, like true Warriors,” she said, adding, “Tenzin is the definition of a Warrior.”
The superintendent added, “I think the big takeaway is how brave he is and how as I said before, no child should ever have to face something so terrible. But we’re going to be here with him. … We’re really looking forward to him getting past this and putting it behind him — and living a full, happy life.”
Correction: In the print version of this article, we reported an incorrect timeline for Tenzin Tanaka’s recovery. Tenzin is expected to receive treatment until October 2024, not this spring, according to his mother. We do regret the error.