Our two years living with blood cancer
To mark International Childhood Cancer Day, Tiffany Ernst reflects on the past two years since her five-year-old daughter, Haylen was diagnosed with leukaemia.
The family have endured countless challenges; being torn apart when Haylen needed urgent treatment in a capital city, braving aggressive chemotherapy and then battling the constant fear of infection.
Living in Toowoomba, Queensland, the family including husband, Karl, older sister, Jayda, 11 and nine-year-old brother, Chevy were leading a very normal life running their own plumbing business.
“In January 2019, the business was busy as we had just returned from the Christmas break and the kids were about to start school again,” remembers Tiffany.
“Haylen was just three-years-old at the time and was not herself; she wasn’t eating and was sleeping long hours.
“I remember sitting in the doctor’s office, telling him everything and I could see it ticking over in his head.
“I asked straight up if she had leukaemia, but he couldn’t tell me anything until she had urgent blood tests.”
After the “longest couple of hours”, the family were given the devastating news that Haylen had leukaemia.
She was given a blood transfusion and platelets before being urgently transported to Queensland Children’s Hospital, a two-hour drive away in Brisbane.
“We arrived at four o’clock in the morning and started treatment by one o’clock that afternoon…not even 24 hours since we were told she had leukaemia,” said Tiffany.
“The oncologist told us that afternoon it was acute lymphoblastic leukaemia (ALL) and what treatment Haylen would need going forward.
“To be honest, I don’t remember much about that time, it was all a big blur, and we didn’t really make any decisions – just put all our trust into the treatment team.”
Each year in Australia around 213 children are diagnosed with ALL, making it the most common type of cancer overall in children aged 0 to 14 years. Click here to read more about childhood ALL.
For the first six months of Haylen’s intensive treatment the family were pulled apart.
“My oldest two kids stayed with family in Toowoomba while we were down in Brisbane with Haylen,” explained Tiffany.
“But Karl still had to run the family business back home so couldn’t be there the whole time.”
The family were offered a unit at a Leukaemia Foundation Patient Accommodation Village close to the hospital and free-of-charge.
“We felt so lucky to be able to come home to a little bit of normality,” said Tiffany. “We set it up so Haylen could have all her toys from home there and made it feel cosy.
“We knew we were safe there as everyone else was going through exactly what we were and understood the risks completely.”
“Having a place to call home during that time took a lot of the stress away.”
Haylen’s intensive treatment caused her to have high temperatures, mouth ulcers and mucositis.
“That was a tough time; we would often get home and then have to head straight back to the hospital as Haylen had gone downhill,” said Tiffany.
“But the most difficult thing was getting Haylen to take her medication as it did not always taste great and we would often need the nurses to help us.”
Risk of infection was always at front of mind for the family throughout Haylen’s treatment.
“During our time in Brisbane, we couldn’t just pop down to the grocery store and we didn’t really leave the bubble of the unit fearing we would pick up a germ that could make Haylen sick,” explained Tiffany.
“We also had to be really cautious when our other kids came to visit to make sure Haylen didn’t catch anything from them – that was hard.”
Apart from a eight week break between treatments, Haylen and Tiffany did not return home until July 2019.
Since then, they have been travelling back to Brisbane every 12 weeks for Haylen’s maintenance treatment, with a telehealth consultation every six weeks and blood tests at their local hospital every fortnight.
“We are just so happy to be home and have the family all under one roof again,” said Tiffany. “But I still consider the hospital in Brisbane our little safety net and happy we can continue to go back there for treatment.
“Having chemotherapy and what it does to little bodies means Haylen doesn’t really know what it’s like to be a ‘normal’ kid and not have to worry about germs all the time.
“She see’s her older siblings going for a swim without a swim shirt in a crowded public pool, but she just knows that’s something she can’t do while having treatment.”
The family are now looking forward to celebrating the end of Haylen’s maintenance treatment next month.
“She can’t wait…we have a little tablet box which has all the tablets for each day in it. She’ll get to Sunday and say to me, “There’s no more left!” and I’m like, “Not quite, we’ve still got a few more weeks to go,” said Tiffany.
“My biggest joy now is seeing Haylen attending Grade 1 and getting back to being a typical kid again.”
“I’m so proud of the little person that she has grown into since her diagnosis. Seeing her with beautiful curls and the biggest smile on her face makes me so incredibly happy.”
Tiffany’s advice for parents:
Make sure that you take time for yourself. It is not selfish to leave your loved one for a couple of hours to give yourself a break. If you are struggling, make sure that you speak to someone.