A Melbourne father has spoken out about his four-year-old daughter’s fight for life after being diagnosed with her third cancer in less than two years.
Little Uma Tomarchio has spent more than half her short life in and out of hospital after a blood test in June 2020 confirmed every parent’s worst nightmare. At only two years old, she had Acute Lymphoblastic Leukaemia, a serious form of childhood cancer.
Two days later, she began chemotherapy and responded so well that she went into remission quickly. Two years later Uma who her father describes as a “bubble of joy", was just about to finish her treatment when she got sick again.
“We went for a check up and found out she had developed another kind of leukaemia due to the treatment,” her dad Giuseppe told Yahoo News Australia. “It’s a rare side effect of the chemotherapy damaging the DNA.”
Once again the little girl began another cycle of chemotherapy to not only target the second and rarer cancer, Acute Myeloid Leukaemia, but to prepare her body for a bone marrow transplant, a much needed procedure to prevent a relapse.
Desperate fundraising bid to cover $300,000 transplant
It was during this wait the family realised its private health insurance wouldn’t cover the $300,000 transplant costs. As Italian immigrants on temporary working visas, making them ineligible for Medicare despite Uma being born in Australia, the couple had been relying on their insurance for the past two years.
Without a downpayment, Mr Tomarchio said he wasn’t able to proceed with the transplant, despite a donor being found in Germany.
In desperation, a family friend set up a GoFundMe page to fundraise for Uma’s life-saving procedure and thanks to more than 5,000 donors, almost $400,000 has been raised.
Finally in September, the blood marrow transplant went ahead. It was “very successful,” the father of two said. “So we went home. She was good, she was doing really well, [but] then somehow, after one month, she got a fever and got sick.”
Dangerous virus found in donor cells
Unfortunately, Uma had developed an infection from Epstein-Barr Virus (EBV) which doctors believe was present in the donor cells. While EBV is a common virus, because the four-year-old was immunosuppressed and on immunosuppressive medicines, she ended up back in ICU with huge amounts of fluid in her kidneys and swollen lymph nodes.
A week before Christmas, Uma’s parents were given their third blow of devastating news. Their little girl had now developed lymphoma, a cancer of the lymphatic system.
“It was really hard to believe she had developed three different cancers in 20 months and that we had to start again with finding the strength and finding the faith,” her father said.
“To be honest, there was a point, it was so devastating, that me and my wife were just praying and said, you know what, it is what it is. At the end of the day, you’re so tired that you look at the sky and say, if you need to take her, just take her, because we can’t do this all the time. It’s so unfair. It’s too much. You’re so tired of seeing her suffering you think, what’s the point?”
Doctors ‘positive’ as family rallies around Uma
In a critical condition, with doctors “really concerned about her life,” Uma was placed on a dialysis machine.
“We were really, really, really desperate and after a couple of days we kind of found the energy to pull up, what we had done for the last three years, try to be positive, and put the Christmas decorations in the room,” Mr Tomarchio said.
After 20 days under sedation, Uma began to respond to another round of chemotherapy. While she is still in ICU and classified as critical, the infection is now under control, her liver is improving and the level of inflammation is going down. On Thursday, the four-year-old received her first injection of T-cells as part of a six-week treatment.
Unfortunately because the complications are a result of the transplant, the family has been left to foot the bill for Uma’s stay in ICU and treatment, which, including the transplant, has now grown to $600,000. But her father remains strong.
“At this point, the doctors are way more positive than before,” he said. “She has responded the best as she could, like she always did in the past, she’s so tough and resilient.”
Referring to the last two and half years as a “rollercoaster,” Mr Tomarchio said sometimes you need to “touch the bottom to find the right energy” to get back up.
“When you get to the bottom, when the desperation and the darkness is really big, you touch a point where you say, you know what, I can't control what I can't control, but I can control what I can.
“What I can control is love. I’m still in pain, but my time is now my love for my daughter.. I don't know what's going to happen, but I need to enjoy every day. I want to enjoy every smile of my daughters. She brought so much joy in her life, she's spreading love for everybody.”
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