This article contains themes of isolation and emotional distress.

The week before Regina Batten’s wedding, in August 2017, she was diagnosed with AML. She had just celebrated her 30th birthday and was about to marry the father of her three children.

“I kept telling myself it wasn’t true,” said Regina, who was immediately airlifted to Sydney, five hours from her home, family, and friends in Dubbo.

Initially, she was all alone at the Sydney hospital where she began intensive chemotherapy.

And the decision was made for her – she would not be going home for the wedding! Instead, Regina and her fiancé, Sam, were married between rounds of chemo, and it wasn’t until the following March that she returned home to the farm “to start life again”.

But five months later and exactly a year after her AML diagnosis, Regina relapsed. Having a double cord blood stem cell transplant in December 2018 has proved to be lifesaving. Then, almost two years later, Regina and her husband separated.

“In the end, our relationship had a huge strain put on it from his depression, me getting sick, and everything in between,” she explained.

“There’s only so much a relationship can actually handle in the end. Now I’m a single mum to my three girls.”

Regina’s AML diagnosis

It was one week out from her wedding when Regina noticed her energy levels were running low and the bruises on her legs.

“My GP was thinking I had a simple case of Q fever from being a cattle farmer on 1100 acres with my fiancé and our three beautiful daughters,” said Regina, who had put her symptoms down to being a working mother with twin daughters, Olivia and Matilda, 18 months old, and Amber, who was nine.

But as soon as she got home from the GP that Friday afternoon, she got the call.

“I had to return to the GP straight away, and the news was – I had a suspected case of leukaemia, and an ambulance was waiting to take me to hospital. My red blood count was 54,” said Regina.

“I thought to myself, the doctor had it wrong. I refused to get in the ambulance and rang Sam and my father, Robert, who were carting cattle at the time.”

Sam drove Regina to emergency where she was met by doctors and nurses with a wheelchair.

“Once again, I refused to get in the chair and walked into emergency. They had blood waiting to give me two transfusions and took more bloods. We were told a plane would take me to Sydney when I was stable.

“The reality had hit Sam and our families before I would accept it. I was a mother of three and getting married and I had just turned 30.”

All Regina’s AML treatment was in Sydney

“I arrived in Sydney with no family and friends until Dad and Sam could make the drive. I was met by an amazing team of doctors and nurses at the RPA (Royal Prince Alfred Hospital) and given a single room until more tests could be run,” said Regina.

The following Monday, after a bone marrow biopsy, Regina’s leukaemia diagnosis was confirmed. She had AML with inversion 16 and a type A mutant CBF-MYH11 gene with a subclone +22 and immediately started induction chemotherapy – 24 hours a day for seven days. This was followed by five cycles of HiDAC (high-dose cytarabine) and she and Sam were married between rounds of chemo.

“I participated in clinical trials and had a paper written about my diagnosis, age, and my antibody to platelets, which meant the more platelet transfusions I had, the lower they got,” said Regina, who only had two platelet donors in Australia.

“The chemo made me quite ill and weak, and I lost a lot of weight,” said Regina.

After completing treatment, she returned to the farm in March 2018. She was monitored with regular blood tests until August 2018 when she was sent back to Sydney and it was confirmed that she had relapsed.

“That wasn’t supposed to happen,” said Regina.

“I had inversion 16 AML and the way it was described, when I first got it, was as ‘the good one that didn’t relapse’.”

Regina needed to have an allogeneic stem cell transplant (SCT) but she didn’t have a donor match among her family or an unrelated match on the Australian Bone Marrow Donor Registry.

“When they were looking for matches for me, my mum and dad gave a list of their ancestry right back as far as they could, and they found Dad’s family had come from England, where they have cords that have been stored for up to 60 years,” said Regina.

“I had two different baby cords* from England.”

One of the umbilical cords had been frozen for many decades, so it was sent to Brisbane where a sample was defrosted to make sure it was still viable and was okay to transplant.

“There was a probability of that cord defrosting and something being wrong with it because of how long it had been stored,” said Regina.

“The other one was more modern. It was newer.”

In December 2018, after having more chemo and radiation treatment, Regina had the double cord blood transplant which has been lifesaving.

Going home and getting on with life

“I did the 120 days in Sydney and got to come home, and touch wood,” said Regina.

“I had a bit of graft versus host disease and things like that, but everything’s been going really good.”

In May last year, Regina received confirmation that the transplant was 100% grafted, “after a lot of transfusions and antibiotics for graft versus host disease in my stomach and skin”, which she said, “they manage quite well here in Dubbo”.

She began weaning off tablets and says, “life is returning to a new normal”.

“I go back to Sydney every six months for check-ups but when COVID came around, they stopped that, not wanting to put me at risk of getting it.”

The family moved from living on a farm to a house in Dubbo.

“When we returned home, we needed to leave the farm and trying to find a rental was difficult as I wasn’t working and we had three children and no rental reference,” she said.

“Life took a lot of adjusting to. I was forever tired and had no energy. Family supported us with helping with our children.”

In July 2020, Regina started part-time work and has been working full-time since April 2021.

The challenges of living in a regional town

Regina said the main challenge she faced was living in Dubbo.

“I had no access to treatment. It all had to be completed in Sydney which meant a lot of travel and time away from our children,” she said.

“We had a huge amount of support in Dubbo but found it quite hard being alone in Sydney.

“Tablets and medication were a lot easier to access in Sydney and when we returned to Dubbo, I found it hard to get some scripts filled, which I needed.

“The RPA doctors and nurses were amazing. We felt at home, and they took great care of me and Sam.

“One of the huge challenges we faced was that there was so much support for me from doctors, nurses and other workers, that Sam was diagnosed with depression after I had relapsed. He needed more support for being a carer and needed someone to talk to.

“We realised after my diagnosis how much we took life for granted. We worked all the time and did very little travel or enjoying the smaller things in life.”

The couple started spending more time with their children and participated in sport as a family.

“We made lifestyle changes, moving off the farm into town, and health changes – healthier foods and more exercise.

“I try to keep myself healthy and always fit.”

The aftermath of treatment

“I do feel really good,” said Regina, who has been in remission for more than three years.

Her haematologist from Sydney is now based at Dubbo and in March 2022 she was about to have her next check-up and to find out if she could start having all her baby vaccinations.

“I was due to have them when they started the COVID vaccinations,” she said.

“I do get days where I feel really tired and lethargic and don’t have the energy to do anything.

“My biggest thing, that everyone’s worried about, is that I don’t eat enough. Ever since doing the chemo and radiation, I don’t have a huge appetite.

“I eat enough to keep me alive. I snack and pick all day, but I don’t eat huge meals,” said Regina.

She lost up to 20 kilos when she was going through chemo, put 15 kilos back on afterwards, and since then her weight has fluctuated by around five kilos.

Support and help from her family

“I had a huge family support network which kept me fighting all the way,” said Regina.

“My Aunty Jen and Uncle Pete were a huge inspiration and encouragement to me as they’d had their own cancer journey and fought it all the way.

“My mum, dad, sister, and brother were always a message or phone call away and there were numerous occasions when they made the trip to Sydney when I needed them.

“My parents took on our three girls and cared for them while I was going through all my treatment and they would travel to Sydney, when I could see the girls.

“I have huge ongoing support and help from my mum, dad and brother who are absolutely amazing.

“I still have bad days, when I have done too much or run myself down, or struggle to get out of bed. And there are days where I feel completely exhausted and need a sleep after work.

“I’ve only got to call on Mum, whether it’s 10pm or 7am and she’ll come around, get the three girls up and ready and drop them to school for me.”

Regina’s ‘new normal’ – enjoying life and creating memories

Last October, Regina and Sam separated which was “a really rough time”, and Regina also lost her cousin who was like a sister to her.

“That was a big shock to my system, and that was when I got the shingles from the huge stress,” said Regina who is going through a divorce.

She’s 34 now and raising her girls, aged seven and 15, on her own.

Regina has just finished her graduate diploma in financial planning, she recently started her professional year as a financial planner and is studying for her masters which she’ll complete by the end of the year.

“I’ll see where life takes me from there,” she said.

“I take every day as it comes and my new normal has actually changed my life. It’s given me a new outlook and made me more aware.

“I have realised there is more to life than work. You make a life with your family is the way I see things.

“Before I got sick, I used to live to work, to save money and buy a house because I thought that you work to retire. That’s the way everyone looks at things and it’s the way we were raised. But you can’t take your money or a house to the grave,” said Regina.

“Now it’s more about making memories with my girls, in case something does happen again, and to enjoy life and not to take it for granted anymore.”

“I stepped completely out of my comfort zone in January last year when I started playing women’s soccer for the first time. I’ve never been a person that plays sport,” said Regina, and she jumped right in, playing the summer and winter comps in 2021.

“I played in the summer grand final which we won and I have signed up to play the winter comp again this year.”

She’s also started riding a dirt bike with her children and her brother and recently went over to Louee endurance and motocross track.

“I love preparing and showing cattle,” said Regina, and it was something she couldn’t do after her diagnosis until last year, when she and her girls showed Fleckvieh cattle at the Dubbo Show.

“I go on holidays with the girls, whether it’s packing up and taking my parent’s caravan away, and before COVID hit we went over to the coast and we’ve been to the snow.

“Last weekend, I took the girls down to the Vintage Fair and Swap Meet in Wellington to show them all the old antique cars and trucks, and horse and carriages.

Regina is working full-time but she works from home as well as in the office and says her company is “very flexible”.

“Jane at work is a huge support with my study and progression with my career. I can have time off, here, there and everywhere.”

That means taking school holidays off to spend time with the girls and going away, and finishing early on a Friday, “so we can go away for weekends”.

“The two youngest both have a motorbike each and like to ride, and the oldest is building her confidence back up after a motorbike accident on the farm when I was in hospital.

“So we pack up the car, the motorbikes and swags, and go away on the weekend and just do something spontaneous.”

Support from the Leukaemia Foundation

During treatment, Regina and Sam were in Sydney “on and off” over two years.

“Accommodation in Sydney was hard. Sam stayed in pubs and at the Sydney university for a while, but the Leukaemia Foundation came through with an apartment and were amazing,” said Regina.

“We had it for the first four and a half months and then, when we came back down, for the next seven, eight months as well.”

Regina described the Leukaemia Foundation staff as “absolutely amazing”.

“They were so helpful with my girls and made sure they had everything. We had one Christmas there, in 2018, and they made sure the girls had presents and a Christmas tree,” she said.

“Louise at the Leukemia Foundation kept in touch once a week and offered support and vouchers. Without the support of the Leukaemia Foundation Sam wouldn’t have been able to stay in Sydney for the two years.

“My daughter coloured her hair and raised over $2000 in World’s Greatest Shave and my brother, Damian, raised something like six or eight thousand dollars when he shaved his hair off in 2018.”

Regina’s advice to others

“For the first six months, I lived in denial. I wouldn’t accept that I even had AML even though I was going through the treatment,” said Regina.

“So my advice is accept that you have it and that you can beat it, and try to live as much as possible.

“I lived in hospital for all my treatment and wasn’t allowed off level 7.

“Make your space your home. I had a homemade blanket and photos hanging on my wall. I made my room colourful. The other three beds in the room were dark. Mine was bright and alive.

“My biggest thing was to make sure I got myself up and dressed every day, even if it was just to go for a walk in the corridor. I did laps of the hallway when I could.

“And I never actually put a hospital gown on, I made sure I wore my own clothes. I was not giving in. I was fighting all the way.

“Take it head on and make sure you have plenty of support from loved ones and make sure your closest person has support, and care for them as well.

“I had three amazing friends in Dubbo that started a group chat right at the beginning. They would send a message every day, made me get out of bed and keep going. The chat wasn’t necessarily asking how I was going, they’d send me a message to tell me how their day was and what they were doing, to distract me. That was their plan, I think, just to take my mind off things.”

“And I wrote in a diary every day – what I was feeling, what was happening that day, everything. I still have them to this day.”

* Cord blood for transplantation is collected from the umbilical cord and placenta after a baby is delivered. Donated cord blood that meets requirements is frozen and stored at a cord blood bank for future use.