All-Star Tenzin

Diagnosis: T-Cell Acute Lymphoblastic Leukemia

Tenzin, his mom Colleen, and his older brother live in New York and, until June 2022 were busy living their lives much like most people. Colleen is a licensed special education teacher and has worked from home for the past 10 years coordinating services for children with special needs and helping parents accomplish their children’s goals.

Both boys were active in karate, practicing five or six days a week and Colleen had even taken it up too! They all loved it. In between school, play and karate, the boys also took piano lessons. The worst health issue they had to deal with was seasonal allergies.

The family had also just moved. They didn’t go too far, but it did require Tenzin and his brother to switch schools. Colleen reflected with us on the karate tournament before everything seemed to shift.

In April, Tenzin started developing frequent bloody noses and was very sniffly. They attributed it to seasonal allergies and he was given with a nasal spray to treat them. Then on May 21st, Tenzin started randomly vomiting. He was also sleeping a lot, so Colleen thought he had a stomach bug. After it went on for about five days, she decided he better see a doctor.

The doctor told them that he had an ear infection, so he was treated for that. Although, even after that treatment, his symptoms didn’t get better. He was then diagnosed with parainfluenza 3 and given more antibiotics. It was after that that Tenzin’s lips started bleeding and she noticed that he had some broken red blood vessels on his torso and bruising on his legs. Colleen was getting more and more worried about her son and decided that he needed to go the emergency room.

Nothing could prepare Colleen for what the ER doctor would tell her next. After the ER doctor did bloodwork and wanted to get a chest x-ray, he came in and told her that Tenzin had leukemia.

“I always say that it was the weirdest feeling, they were talking and when I heard leukemia, all I wanted to do was take my kid and run away,” Colleen explained.

Immediately he was admitted to the PICU (Pediatric Intensive Care Unit). His body went into shock and he had a seizure right after that. His kidneys weren’t working properly.

“The focus at that point was not on the leukemia, but on getting him stabilized. He almost died,” Colleen said. “A friend came to get my other son and bring him to my mom who thankfully lives close by.”

The next morning the doctor talked about putting in a port to start chemotherapy right away. When they tried this, he was oozing blood as his platelets were not stable. The PIC line would have to do instead. Then they started the chemo protocol.

Colleen asked what any concerned mother might. What are the options? “I asked, what happens if we choose not to do chemo and the answer was that we didn’t have a choice, it was essential to try to save his life,” Colleen said.

Tenzin spend those first 19 days in the hospital. After that he was able to go home and be treated in the clinic. “It was a very wild ride; he went from being a healthy kid to one who couldn’t even walk and almost passed away,” Colleen explained. “It took until October for him to go into remission and he will be in treatment until October 2024.”

After everything he’s been through, it’s been a struggle for Tenzin to return to a normal life, especially when a lot of dealing with cancer means a lack of choice in anything really. “Tenzin is a very strong-willed kind of kid who knows what he wants. He has been very much affected by Covid because he was in kindergarten when it started and has struggled with the loss of control and not being able to go anywhere, both because of Covid and now his leukemia. He also takes a massive amount of oral medication. I am a behavioral special education teacher, but it’s hard when it’s your own kid. He had no choice with almost everything, so now I try to give him options. For example, does he want his medicine crushed or does he just want to swallow them?”

Tenzin’s health aside, Colleen is a single mom with another son to care for as well. Luckily, Colleen’s mom was able to live with Tenzin’s brother, retaining some normalcy and avoiding him being shuffled around. He was then able to stay connected to his friends through video games. He was also able to attend the Sunrise Day Camp for kids with cancer and their siblings which Colleen said was a huge blessing.

Colleen’s work certainly changed as she cared for Tenzin, but it was actually a mom of a child who she has worked with in her role who encouraged her.

“I quickly gave back my caseload and took a leap of faith that we would manage. I am the sole provider for my children and am now in a scary position not knowing where our income is coming from. Ironically it was the mom of a child who I was helping who told me that I had to focus on him. She said you took care of my baby, now I will take care of yours,” explained Colleen.

Colleen considers herself to be very resourceful and did a lot of research into the programs and organizations that could help them out.

When asked about the worst moments, Colleen said when Tenzin was first diagnosed, he got a blood clot in his brain, and they had to apply pressure on his groin to get it to go away. “They had to hold him down. I asked, can you give him something? They told me, “We don’t have time.” Tenzin looks to me for reassurance, I have to stay ok for him,” Colleen said.

Nevertheless, there were more uplifting moments. Tenzin started a little business selling arts and crafts, bracelets and treats in the hospital. “We brought brownies in, and people loved it,” Colleen said. “It got people in the room, and socializing.”

Pinky Swear was one of the first organizations to help Colleen and her family with an Orange Envelope. “We put the letters on the fridge and they are still there. It was so encouraging,” she said. “I was scared, thinking how I would navigate this, but the website was very simple.”

They received a $500 gift card later that month. Colleen used it for gas and food and were happy to know that Tenzin’s changing food needs were taken care of. According to Colleen, he was picky before getting sick and then it got worse with chemo. She also had to learn to take care of herself. “Initially, I had not been taking care of myself, but now I could get food when I was in the hospital and not feel guilt,” Colleen said.

“The biggest piece as a mom going through this is knowing that there is somebody there who understands the most basic things, knowing people care and recognize that this is hard. It’s very important that families know that because this journey is very isolating,” she said.

Tenzin is doing better and is in maintenance care, so he attends clinic once a week on top of taking oral pills at home. Colleen says he has energy again and wants to go outside. In addition, his personality is starting to come back. As for school, Tenzin has PT, OT and counseling at school and he gets to take private karate lessons to accommodate his situation.

Colleen is hoping to resume work in September depending on where Tenzin is at. For their family, it’s a balance because if she makes too much, they will lose out on precious benefits that are keeping them afloat right now.

Colleen concluded by mentioning the All-Star Experiences in which Tenzin and his brother are participating. “I cannot say enough about the guys that connected with my kids, they were so flexible, and the boys had so much fun, thank you so much.”

July 2023 update: Pinky Swear caught up with Tenzin’s mom to see how he was doing. It’s been a mixed bag of ups and downs this past couple of months.

Tenzin’s counts have been low following an increase in his chemo dose because he has finally gained some weight. The higher dose lowered his counts, resulting in a 3 week hold in treatment. He is hoping to be able to resume chemo at home after another check-up this week. During the 3-week hold he has been having to get bloodwork checked at clinic twice a week, which has been frustrating for him because he was in a place where he was not having to do that. “Thankfully his counts have improved recently which is a huge relief because, if they had not recovered then we could have been looking at a relapse,” explained Colleen. “That’s a terrifying thought. To be honest I have been trying hard not to think about it. I was very concerned about going backwards, back into induction, a possible bone marrow transplant and also of course his mental wellbeing.”

Tenzin had hoped to go to camp, and he did for a day or two, but it was too much. He was falling asleep all the time and so sadly he had to stop.

The family is looking forward to going to Fire Island, a little beach town, where Colleen’s mom rents a house every year for a few days. It will be just Colleen’s mom, the boys, Colleen, and her sister. “We missed it last year and we are supposed to leave on August 9th. We won’t get the green light though until we go to clinic that morning, which makes it stressful. We are hopeful.”

His brother is going to Camp Sunrise every day which he loves. It’s a camp for kids with cancer and their siblings. He also does an outdoor basketball clinic on Saturdays. “Sunrise is amazing,” said Colleen. “The kids get to swim, do yoga, martial arts, arts and crafts, and they also have themed days; they are busy all day, he comes home exhausted. Most of his friends are just hanging around all summer so I am so glad that he likes it. A lot of counselors were campers, and he loves the idea of being a counselor. They bus him which makes all the difference.” Between doctors’ appointments Tenzin and Colleen are not getting much of a summer though and it’s mostly spent at home, at Colleen’s mom’s pool or sometimes at local parks.

“I feel like I am constantly going back and forth. My big worry is that I start working in the fall, and then something unpredictable happens. Because, as a single mom I have to work a lot. If I just worked part-time, then I wouldn’t qualify for benefits. Even if can figure out a small routine it may be possible, but I am not sure. I really did enjoy my job, but I have to be careful not to take on too much, and then not do a good job for obvious reasons. Once we find the right balance of medication it may be ok. My rent is very high so don’t want to get myself in a position where I can’t afford to live.” That’s the almost impossible situation that Colleen is in until Tenzin completes his treatment in October 2024 – all being well of course.