Valencia High School grad Anika Mathur was happy and healthy — until she wasn’t.
Before she and her family knew it, the then junior’s tiredness became a diagnosis of aplastic anemia, a blood disease where the body fails to produce enough blood cells.
“It attacks my bone marrow, and the bone marrow is what produces new blood, not just the red blood (cells) but everything in your blood,” Mathur said.
While Mathur wasn’t very worried when she found out, thinking it was just like regular anemia, the same couldn’t be said for her parents.
“As educated as you might be, you can never guess the depth of the problem,” mother Gayatri Mathur said. “My first thought was, ‘What did I do wrong?’ Apparently, it’s an anomaly — it just happens.”
Mathur’s diagnosis came in May 2019 and by June, she was receiving her first treatment: immunosuppressive therapy.
“You’re given medicine to suppress your immune system in hopes that it can just calm down and stop attacking your bone marrow, and it will rebuild itself properly,” Mathur said. “It’s less invasive than a bone marrow transplant, but the side effects I got ended up being much worse.”
When Mathur’s immunity was down, she ended up catching multiple infections, the worst being one in her lungs, which put her in the hospital in need of two surgeries, one on each lung.
It was then that Mathur began to worry, realizing she wouldn’t be going back to school that year.
“It was more surprising than anything to think that what I thought would be easy took so much time to fix,” she said. “I was most upset about just not being able to go to school and see my friends, but I kept in touch with them through the phone, and they visited like three or four times.”
Mathur ended up staying in the hospital all summer, an “uncertain time” for her parents.
“We were living from day to day, and we still are,” Gayatri said, “because you never know which way it’s going to go. We learned to cope with it, and Anika did better than us I think. She was living for the moment.”
It was the support from family and friends that got the family through it, as all pitched in in different ways, whether it was delivering food and clean laundry to the hospital or taking Gayatri’s mom to the doctor and filling her prescriptions.
“Anika’s dad didn’t go to work for two months when she was critical — we just didn’t want to leave her,” Gayatri added. “People were just amazing.”
Mathur got out of the hospital in October, and by December, doctors were telling the family that the treatment wasn’t working as it should be and that she’d need a bone marrow transplant.
“I was even more surprised to find out that I would have the transplant because I thought that my blood and bone marrow was starting to work a little bit, so I didn’t suspect that it would suddenly plateau,” Mathur added.
Out of everyone on Be The Match’s global registry network of 35 million people, Mathur had just one match.
“That person then had to go through a physical and make sure that they were healthy enough and met the requirements to do the donation,” added Christine Mantilla, who supervises member engagement, enrollment and experience at Be The Match, “so even when she had that one match, it wasn’t a sure thing.”
Not everyone has an equal chance at finding a match, as the registry is overwhelmingly white, making ethnic heritage play a significant role. So with her options slim, in January of this year, the Mathurs began their own search in the hopes that they might be able to find another match should the one that Mathur had not work out.
“Our wheels started turning,” Gayatri added. “Her match was a 9/10, not even a perfect match, and their blood type was different, so we being parents did research and spread our wings.”
They set up community registry events in India and Canada, as well as in the U.S., with people everywhere stepping in to help, and though they didn’t find a new match for themselves, the Mathurses hope their efforts would benefit someone else.
“She was extremely fortunate that that one match that was viable for her was able to donate and chose to move forward when they were called upon,” Mantilla added, “and they saved her life.”
In February, Mathur received chemotherapy and radiation in preparation for her transplant, again remaining in the hospital following treatment so doctors could monitor her recovery.
“It was shooting an arrow in the dark basically,” Gayatri said. “Anika has been very strong. She went through a lot last year, and they’re not very happy memories so to speak, but Anika is being Anika. She’s had a very good attitude, and she’s happy and jumping around when she’s feeling good, just getting on with life.”
Through her recovery, Mathur was able to remain on track with school, graduating on time in June, and has since begun online classes at College of the Canyons this fall.
It’s now been seven months since the transplant, and Mathur is still on her way to a full recovery, remaining primarily at home since getting out of the hospital, as her immune system is still compromised, especially considering the current COVID-19 public health crisis.
“With the bone marrow recovery, you really don’t want to get sick, and it’s like knowing that more people are getting sick … it’s kind of a scary thing,” Mathur said. “Even when we bring groceries home and my mom or dad go shopping, they have to totally clean before I can interact with them just in case.”
Even so, Mathur said she’s also thankful that people are being more cautious and understand the precautions she needs to take.
“To me, everybody could give me an infection, and now, everybody knows what that feels like,” she added. “It’s a little bit of a relief that whenever I have to go somewhere, everybody else is also being as careful.”
For the Mathurses, the past year has been a life-changing experience for them.
“People have better experiences, but you know what? This was meant for us,” Gayatri said. “What I learned from this is you have adversities and you face them, but you also meet so many kind people along the way.”
Now, Gayatri hopes to do the same for someone else. “It’s my chance to give back.”
Anika Mathur’s story is unique in many ways, as she went from diagnosis to treatment to transplant all within the span of about a year.
“For a lot of patients that are ethnically diverse, they sometimes end up waiting years to find a match,” Mantilla said. “Most people spend at least three years on the registry until they’re called, if they’re ever called.”
That’s why Be The Match strives to get as many people on the registry as possible, as finding a match for those in need is so challenging.
To join the registry or for more information, visit join.bethematch.org/cure186.