Baby's mouth rash a sign of sinister disease: 'I remember the doctor Googling right in front of me'
By Jo Abi|
When Skye and Nathan Whiteman welcomed their second child, Brydee, in 2015, they were already parents to three-year-old Allyrah.
"When Brydee was about four weeks old and started getting thrush in her mouth," Skye, 32, tells 9Honey. "Her lips and her tongue were white and she and I kept passing it back and forth to each other during breastfeeding.
"We tried everything and it was stressful and painful."
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"I just thought I wasn't being careful with her immunity because she was a newborn," she continues. ?
Brydee took her daughter to the doctor "a couple of times" and was told to use gel and nipple shields.
"All that fun stuff," Skye explains. "I remember the doctor googling it right in front of me. I think they tried different medications but they didn't work and it was too stressful so I switched to formula when she was six weeks."
Still, her baby became increasingly unwell.?
Next, Brydee was hospitalised with bronchiolitis, three times
"They didn't know what was causing this either," she says. "I assumed I wasn't being careful enough with the people around her."
By the time Brydee was five month old she was hospitalised again, and that's when Skye noticed her daughter's "distended belly."
"I did bring it up to the maternal health care nurse and a GP and a paediatrician, it just wasn't normal," she explains. "And it was very tight. I kept questioning it
"They thought it may be her spleen working overtime to fight off infection," Skye says. "I remember having seen My Sister's Keeper only a week before and I remember them talking about lymph nodes in the movie and I thought, 'What?'"
An ultrasound was ordered for later that week but Skye couldn't wait.
"I went back to the GP and they said it was probably just an infection," she recalls. "I said large lymph nodes are usually cancer and they said, 'Kids that young don't get cancer.'"
Further tests were ordered including an x-ray and a blood test the following morning.
"We did the blood test at 8am and then I went to work," she says. "By 10am the hospital was blowing up my phone and ringing my ex-husband [Brydee's father] and couldn't get a hold of us.
"It was actually Mum who answered the call because she was my next-of-kin," Skye says. "They wanted us to get Brydee back to the ?hospital for a few more tests. They wanted more blood.
"We were in the treatment room with Brydee's paediatrician and I said, 'Are you worried?' and he said, 'I am worried but I want to triple check everything before I say anything.
"I freaked out then."
Approximately 45 minutes later "heaps of doctors," a nurse and a social worker walked into the room.
"They sat us down and told us Brydee had some form of leukaemia but they weren't sure what type. I was holding her and I felt stunned and I drove home to get ready to take her to the Royal Children's Hospital in Melbourne and I felt sick."
"They wanted to transfer her that night so I had to grab some stuff," she says. "When I pulled into the driveway I got out of the car and threw up in the garden.
"Mum was there and I told her that Brydee's got leukaemia. I remember her standing up and saying, 'She'll be fine. I only produce strong children and that includes grand babies.'"
It took four weeks to find out what kind of leukaemia Brydee had: Juvenile myelomonocytic leukaemia or JMML.?
"It's rare, only one-in-three million and there were no other cases in Australia at that stage," Skye says. "She had to have maintenance chemotherapy to begin with and the hospital had to get financial approval for treatment."
"Right before she had a bone marrow transplant when she was eight months old she had really, really intense chemo," Skye says. "?I had to bath her every three hours, including overnight, because her sweat would burn her skin. It was horrendous.
?"It felt crazy putting poison into my child's body to fix it, I never understood it but it worked," she continues.
The bone marrow transplant was possible due to an anonymous donor.
"We don't know who they were but we call them 'miracle cells' because she's been in better health since then, she's the only kid in the house who never gets sick," she says. "Even last January she was the last person in our house to get COVID but she didn't have any symptoms, she just tested positive."
Following her bone marrow transplant the family were sent home and expected Brydee may need to be readmitted for further treatment, but she never has been, aside from once when she hit her head on concrete.? She is now seven and a typical healthy, happy little girl.
?"To be honest I still have freak out moments when she shows symptoms of anything," Skye confesses. "If she gets a slight runny nose or a sore leg... they say five years after having a bone marrow transplant if everything is still good then you are medically cured from cancer.
"When she turned five we celebrated with a special photo shoot at Melbourne Zoo. We were in the butterfly enclosure, because butterflies signify new life."
When Brydee was 10 months old a third of one of her ovaries was removed and preserved to ensure her future fertility.
"Chemo destroyed her reproductive area and she's not at risk of not going into puberty so she may need hormone treatment," Skye says. "When she turns nine we have to go to an endocrinologist to see what's going on.?
?"She can also go into menopause early so will have a very small window to become a mother," Skye continues. "She still thinks babies come out of your belly button and we want to keep that innocence, so she doesn't really know.
"She also has a high risk of other cancers including skin cancer so we have to be careful in the sun."?
The family is taking part in the CEO 'Dare to Cure' fundraiser happening on October 14, raising money for the Children's Cancer Institute, with Brydee acting as an ambassador for the event.
"She's very excited to be able to stay in a hotel the night before," Sky says. "She's an ambassador this year so will get to meet and greet people and say thank you."
?To find out how to donate life-saving bone marrow visit this website.
Find out more about the CEO 'Dare to Cure' fundraiser on October 14 here.?
