At 17 weeks pregnant, Nikiya went to hospital worried about her baby. It led to a cancer diagnosis.

This story deals with miscarriage and loss and could be distressing for some readers.

When Nikiya and Dave discovered they were pregnant shortly before lockdown in 2020, the Wollongong couple of 15 years were thrilled. Their joy was short-lived however when Nikiya discovered at 11 weeks she had experienced a missed miscarriage.

"It was a really difficult time," Nikiya tells Mamamia. 

"But by listening and reading the stories of other women, I realised I wasn't alone in my grief." 

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Nikiya said that this pregnancy loss cemented their desire to have children, but after another 12 months of trying to conceive, the couple sought help from a fertility specialist. 

"I underwent a lot of tests and it was frustrating to discover there wasn't anything obviously wrong, so they classed me as having 'unexplained infertility'. In August 2021, we began the IVF process, and it was really isolating going through it all during lockdown. 

"I had 26 eggs collected, which was a huge amount, but because I had too many follicles, my body went haywire."

Because Nikiya needed time to recover, she was told a fresh transfer would be impossible. Instead, they would see what happened with the eggs and then embryos while she rested. 

On day one, things were looking positive as doctors had fertilised 16 of Nikiya's eggs, but by day three it was a different story.

"I was struggling with fluid on my lungs and in my abdomen and they diagnosed me with Ovarian Hyperstimulation Syndrome (OHS). I went to the emergency department, but it was a difficult period with COVID patients filling the hospital and I couldn't have any visitors. 

"I spent a week recovering in hospital, during which I got a call from the clinic to say that sadly most of the embryos were not viable. They were still watching three embryos and yet on day five, my specialist told me they only had one viable embryo left.

"[The next day], they told me they actually had two embryos to freeze, and I was so relieved."

Once Nikiya had fully recovered, she was ready to try the first embryo transfer in November. 

"It was immediately unsuccessful, confirmed by a negative pregnancy test. It was pretty hard to take after everything we'd been through as well as COVID lockdowns thrown on top. We took a break and enjoyed Christmas with our families followed by a summer road trip."

By January 2022, Nikiya and Dave felt strong enough to try their second and final embryo transfer.

"Going through IVF makes you very resilient; learning that not everything is in your control. I was also a little reluctant to do it again as it was terrifying, but we decided to just try. In February 2022, I went in for the embryo transfer procedure and it was successful. We had a positive pregnancy test result, and that was just unbelievable!"

While it was happy news, Nikiya says that her previous miscarriage weighed heavily on her mind. 

"It was terrifying and at first it was hard to feel a level of excitement without also feeling sheer terror and fear. But I tried to be grateful because I was pregnant and just take each day as it came."

Nikiya and Dave. Image: Supplied.

The first trimester passed without too many physical side effects and Nikiya says she "felt amazing". Because she was an IVF pregnancy and had tests in her previous pregnancy that revealed she had antibodies in her blood, Nikiya needed close monitoring. 

She had an appointment with a haematologist in Sydney who did some tests but was confident things were tracking along fine.

"At around 15 weeks in May 2022, we celebrated my first Mother's Day with a weekend away with family. It was so positive and exciting, but a few days later, I felt really unwell.

"I had been walking lots and going to Pilates as normal but suddenly even just bending down to pick up a piece of paper made me feel out of breath. I felt dizzy, had strange tummy cramps, and I would also need long three-hour day naps, which was really out of character. 

"When the cramping got more severe, I decided after chatting to a GP that my only option was to get checked out in hospital."

Because the emergency department was really busy, Nikiya had to sit and wait for five hours wondering if she was doing the right thing.

"If I wasn't pregnant, I would have been home already. But for the sake of my then 17 week unborn daughter, I waited it out and eventually they took me for a scan.

"We had been told she was measuring small, but while the sonographer scanned my tummy, she didn't really say too much and I thought it was odd. 

"The doctor came to see me and said they needed to do more blood tests but they weren't really telling me anything. At 2am, they finally admitted me to a bed on the maternity ward."

Nikiya says that after being examined multiple times and hearing the baby's heartbeat, she began to wonder what exactly was going on.

"I kept thinking, 'Why am I here?' and finally at 8am that same morning, the head of department came to see me and told me they were sending me to the Royal Hospital for Women in Sydney, but they were just going to do a final few scans.

"It had all begun with scans of the baby, and now it had moved onto scanning me. But if they knew at that point what was happening, they weren't yet ready to tell me."

While awaiting another scan in the radiography department, Nikiya received a call to say the haematologist was waiting to see her. He requested more investigations of her spleen and liver be done and when she returned to the ward; he was waiting to speak to her.

"I knew it was unusual for a specialist to be waiting for me. He explained that something had shown up on the blood test results from my ED admission and that they needed to do more investigating to rule out something sinister. I asked him what that sinister thing might be, and he said, 'Leukaemia'. 

"I remember turning to my husband after he walked out and saying, 'Oh, they always use the worst-case scenario and it will probably be fine."

Later that afternoon, the haematologist came back to see Nikiya and Dave and confirmed their worst fears. Nikiya had leukaemia. 

"Never in my wildest dreams did I think that my admission to hospital was going to be about me. I had only been told recently that I was going to Sydney's Royal Hospital for my pregnancy but now it was about me too. We were told we had to move quickly. 

"It was Friday by this point and she said I would need to be there on Sunday. It was just wild; I was in shock. They sent me home, and we spent that afternoon contacting family. No one could believe it as they thought I was in hospital for the baby."

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When Nikiya got to Sydney on Sunday, it was all systems go. She had a bone marrow biopsy to determine what type of leukaemia it was and then she headed straight into her first platelet transfusion.

"Within the next hour or two, I was taken in a wheelchair down to the Royal Women's Hospital to meet with the head of obstetrics maternal fetal medicine department. They wanted to talk about my pregnancy but then I've got this whole other team wanting to talk about my cancer and what my treatment protocol is. 

"I remember saying to Dave, who is really pragmatic, that I couldn't even go day by day. I just had to go test by test because every hour, something was different, something was changing."

While being treated for her leukaemia, Nikiya received the devastating news that their baby daughter, who they named Lexi, had passed away at 18 weeks gestation.

"All the scans had shown she was very weak and measuring in the lowest centile possible. It was absolutely horrific and a really hard thing to deal with at any point, but particularly because of our unique circumstances.

"She was my miracle baby, a fighter and our last embryo, and she gave us so much hope. It was just so, so hard. But I truly believe Lexi saved my life. Without her, I wouldn't have gone to hospital or even known of my leukaemia diagnosis. She was my guardian angel and her short time on earth was more purposeful than some have in an entire lifetime."

Doctors told Nikiya she could return home from Sydney and take the weekend to breathe and grieve before continuing with her treatment protocol in Wollongong. 

Nikiya began her first of five rounds of chemotherapy on the following Monday.

"There was still so much I didn't know around leukaemia, like the fact that I would be admitted for 21 days for every cycle of chemotherapy. It was this whole ordeal of being in hospital for 21 days straight being neutropenic [low count of white blood cells], being anaemic, and just feeling so unwell.

"I remember my specialist came in one day and she said, 'You're literally surviving on other people's blood right now.' And in that moment, I realised how real and how important giving blood is for people like me.

"After I began telling friends about my leukaemia diagnosis on Facebook, I was blown away by people signing up to donate blood. We've had 104 donations that will potentially save 300 lives and I'm so grateful for the support and the love in my community. I'm so proud of what we've achieved but I want to do more."

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While Nikiya finished her five rounds of chemo in October last year and is now in remission, she will return to hospital later this month for a bone marrow transplant. There were unfortunately no matches on the Australian Bone Marrow Registry but an exact match was found for her in Germany and flown to Australia.

"My family were also tested, but sadly their bone marrows were not a match, so I'm incredibly lucky to have an exact match from an anonymous male donor in Germany."

With her focus now on getting well, Nikiya says she hopes that having a family is still in her future. 

"Children are absolutely part of my hope for the future and I believe Dave and I have an abundance of love to give. I recognise that [motherhood] is a gift and something out of my control. I try not to focus too much on that as the grief and heartache of losing Lexi is so profound.

"For the immediate future however, I cannot wait to just live my life thanks to my donor and the science and medical professionals who make it all possible. Simple things like hugging my friends and family, going to a restaurant, or taking a holiday somewhere away from the hospital, are all so important.

"As is getting the word out about donating blood and signing up to the Australian Bone Marrow Registry. If I can help save just one more life, my work and that of my miracle baby Lexi, is done." 

By making an appointment to donate blood, you could help save up to three lives. To book a donation, call 13 14 95, visit lifeblood.com.au, or download the free Donate Blood app. 

When you donate blood or plasma at Australian Red Cross Lifeblood throughout February, you will receive a limited-edition Camilla Franks bandage to raise awareness that donating blood is a great way support someone living with cancer.

Red Nose provides vital bereavement support for anyone affected by the death of a baby or child. This includes families who have lost babies to miscarriage, stillbirth and infant death.

The Red Nose bereavement support line is available 24/7 on 1300 308 307.

Feature Image: Supplied.