Nikita’s three now and in remission which is “truly a miracle”
When Nikita was born with leukaemia in August 2019 his parents were told he probably wouldn’t survive; his chances being only 4%.
“He was too sick, and it was too complicated,” said his mum, Nina Kolder, summing up the devastating situation that was sensitively explained to her and Nikita’s dad, Nacho, during a long conversation with two oncologists within hours of giving birth.
“I remember something our oncologist said… ‘20 years ago there was literally nothing, nothing at all we could do. Today there might be one treatment. I have no idea if it’s going to work but we could try it’.”
That was “really good” for Nina and Nacho to hear.
“It made us realise that thanks to medical progress and research, we had that chance, and we took it,” said Nina.
Ultimately, it was a bone marrow transplant that saved Nikita’s life.
He’s in remission and on 13 August 2022 he turned three as a happy and active toddler. To celebrate, the family returned home to Alice Springs for the first time to visit their friends and supporters.
Nina’s pregnancy, Nikita’s birth, and his leukaemia diagnosis
Nina and Nacho were both living in Alice Springs when they had met. She is from France and he’s from Argentina, and Nina was pregnant with their first child when regular tests indicated “something was not right”. She went to Adelaide a couple of times for further tests, but the specialists involved weren’t sure what exactly was wrong.
Then, at 34 weeks pregnant, Nina was sent to Adelaide again, and “the whole world stopped” when she was sent to emergency at the Women’s and Children’s Hospital for her baby to be delivered.
“They said, ‘there’s something wrong, and if we wait too long, then he’s not going to make it’.”
“The doctors, everyone was shocked, and they were perplexed as to what to do about the diagnosis.”
A few hours later, while Nina was still “paralysed by the surgery” the specialist doctors went to her hospital room to discuss the situation in more detail.
“It was a really long meeting – maybe three hours – and it was a very traumatic conversation to remember. I’m able to talk about it now because we’ve been through a bit of therapy,” Nina explained.
The standard protocol for infant ALL was being considered but there was a problem as not only was Nikita premature, he also was very sick because Nina had been given steroids before his birth.
“This is what they do for prems to be able to breathe when they are born,” said Nina about the treatment that helps a premature baby’s lungs develop more quickly.
“But they didn’t know he had leukaemia and the steroid caused tumour lysis*. It had killed the leukaemia cells very quickly, which created a lot of dead cells which my baby’s body couldn’t clean up, so his kidneys had swollen and his liver was inflamed.
“They wanted to put him on dialysis, but it was too dangerous, so they decided to do the old fashioned method of taking blood away and giving him new blood at the same time.
“Everything in those first three days was critical,” said Nina.
Treatment decisions, delays, and disappointment
As Nikita wouldn’t have tolerated intense chemotherapy, he was given immunotherapy – blinatumomab (Blincyto®) – and evidently it was the first time this treatment had been administered to such a young patient as first line therapy.
“They didn’t know what to expect, but it was the only thing we could do,” said Nina.
“It was lifesaving at the time because it had less toxicity than chemotherapy. It allowed our baby to recover after his birth and to develop a bit, and it managed the leukaemia.”
Over the next 10 weeks, Nikita’s body grew, and his body developed. For the five doctors looking after him, that was their initial focus before taking the next step; treating the leukaemia.
“There were so many specialists involved at the time. Sometimes there would be 10 doctors in the tiny little room with the incubator at neonatal intensive care, all talking between themselves and talking to us,” said Nina.
“It was an intimidating environment, but it showed a lot of support, and the doctors were amazing and tried their best. But you could tell it was a difficult situation.”
When Nikita was transferred to the oncology ward, at 10 weeks old, his disease “was going down a bit” and Nina thought, “great, he’s ready to go to transplant”.
“The doctors explained that a stem cell transplant was the way to treat aggressive disease, so that’s what we were planning.”
An umbilical cord donor had been found and Nina and Nacho went to Sydney to talk about the procedure which was to be undertaken there. But in December 2019 Nikita’s leukaemia had returned at a “really high level”; he had become resistant (was no longer responding) to the immunotherapy.
“There was no way we could go to transplant, so at the last minute it was cancelled. We had to start something new,” said Nina.
That’s when the initial plan discussed, the Interfant 06 chemotherapy protocol, became the second line of treatment and in January 2020 Nikita started the nine-month regimen of very intensive chemotherapy.
“That was a really tough time again,” said Nina.
“We managed in a way, and we had lots of side effects.
“When you think you’ve got the disease under control and then it comes back higher than before, you have to change plans. It’s mentally very draining.”
After six months though, Nikita’s leukaemia relapsed again.
“He had become resistant to chemo as well, so we were nine months in when we were told we’d used all our cards and that was sort of the end,” said Nina.
“I’d been doing so much reading and contacting families in similar situations. This is all I could do when my baby was so sick. I contacted many doctors internationally, to know all the treatments that existed, so I heard about a new immunotherapy called CAR-T,” said Nina.
“It is something we had discussed with Manika (Dr Manika Pal, Nikita’s paediatric haematologist) but it was only available on a clinical trial and our son didn’t fulfill the requirements. He was too weak and too young, and if we went ahead, we had to go overseas.”
But CAR T-cell therapy was something Nina and Nacho really wanted to try and at the next multidisciplinary meeting, there was a lot of conversation on the subject between different doctors in different locations. It so happened that there was a CAR T-cell therapy clinical trial open in Melbourne and an exception was made for Nikita considering his age and weight.
“They said they were happy to try and accommodate him,” said Nina.
The hope that CAR T-cell therapy would cure Nikita
So, in June 2020, the family moved to Melbourne and Nikita was admitted to the Royal Children’s Hospital, just three days before the strict restrictions of the COVID-19 lockdown there.
“We were super happy. We had a few friends in Melbourne and thought it would be nice to have a bit of support. All the time we were in Adelaide, we had no friends or family which was quite hard,” said Nina.
“But when we arrived, COVID happened, so we weren’t able to see anyone.”
Nina and Nacho never had the chance to return to their rented home at Alice Springs, so after six weeks in Adelaide, their friends in Alice had packed up their belongings and sold some of their furniture for them.
“The Leukaemia Foundation was very helpful at that time, paying some bills. And in Melbourne, we contacted them about an apartment to stay in, but they were fully booked,” said Nina, and she and Nacho stayed at Ronald McDonald House.
Then, coincidentally, the day they were getting ready for the collection of Nikita’s T-cells they also found out that his disease had come back, even higher, so plans for CAR T-cell therapy had to be cancelled.
But Nina said “it was good” they were in Melbourne, as this gave them access to a clinical trial for another immunotherapy, inotuzomab ozogamicin (Besponsa®) which reduced Nikita’s leukaemia burden again which put CAR-T back on the agenda.
In late July, over five days, Nikita had apheresis to collect T-cells from his blood. These T-cells were sent to a laboratory in the U.S. to be genetically modified, which meant they were tailored to recognise his disease, before they were sent back to Melbourne.
After being given the infusion of T-cells on September 15, Nikita spent two days in the paediatric ICU with fevers and epilepsy after the onset of cytokine release syndrome – an inflammatory response. This was a scary time for Nina and Nacho, but they were also hopeful of a positive outcome.
“There had been a lot of very good results with CAR-T, and it was our hope for a cure for Nikita,” said Nina.
“But CAR-T didn’t work for him. When he had his next bone marrow biopsy, at 30 days, we found out it hadn’t made a difference.”
This meant their “very last option” was a bone marrow transplant.
Nikita’s lucky last option – a transplant
Nina and Nacho knew there was an increased chance a transplant might not work for Nikita because of how much leukaemia he had. They also knew that a transplant using fresh stem cells from an umbilical cord would contribute to a higher success rate. There also was the added complication of COVID, which affected travel and could have dire consequences on transporting a donor’s stem cells.
Since Nikita’s diagnosis, his parents had constantly worried that if he got to transplant, he might not have a donor, so they had been raising awareness and advocating for people to join a bone marrow registry.
They campaigned amongst their families and friends in Alice Springs, France, and Argentina, and this resulted in more than 1000 people registering their bone marrow.
“It was very important for us. It may not benefit Nikita, but it would help others,” said Nina.
“The number of bone marrow donors on the registry in Australia is so low, yet it is such an easy process – just a swab, and they only call if they need you.”
While an umbilical cord donor had been found when a stem cell transplant was first considered for Nikita, in late 2019, it could only be held for three months so it was no longer available, and another search began.
Thankfully, a cord donor was found overseas that Nina said was, “a much better match” than the first one.
“That’s what saved my baby’s life.”
On 30 October 2020, after high-dose chemotherapy, Nikita had a stem cell transplant.
“It was an important day,” said Nina, “but after having hundreds of infusions before, the transplant was an anticlimax.”
Managing severe graft versus host disease
The next week, Nikita started having side effects as his skin and key organs began being affected by graft versus host disease (GVHD), and two weeks later, his parents received the best news – the engraftment was a success. This meant that Nikita’s transplanted stem cells entered the blood, made their way to the bone marrow, and started making new blood cells. Managing the GVHD, however, was “the hardest time of all”.
“It can be fatal if not controlled and it’s a hard balance – you want the stem cells to do their job and get rid of the leukaemia but if they’re too active they could kill Nikita,” Nina explained.
“There were lots of doctors all talking about how to manage the symptoms of GVHD without compromising the graft versus leukaemia effect and one day, they introduced eight additional medications at once, including ruxolitinib (Jakavi®) on compassionate grounds.
“We have cried so much, we’ve been angry and scared – so many emotions non-stop, for two years,” said Nina.
“Through it all our baby was joyful and resilient, even when he was vomiting blood and had the most terrible symptoms.”
But in December 2020, when grade 4 GVHD affected his gut and the steroids didn’t work, Nikita suffered severe symptoms of fever, pain, vomiting, and diarrhoea. He was put on morphine, and for the first time he stopped laughing and smiling.
“His mood was very sad. He’d lost the joy he always carried with him. That’s what affected us the most,” said Nina.
“And he’d had so many frequent procedures including skin biopsies, naso-gastric tube, and dressing changes, he’d became scared of everyone who came into his room.”
Nina said she and Nacho had always showered their son with hugs and love and had played music and danced with him since his diagnosis.
“We didn’t know if he was going to make it, and we wanted to make this little time [we had] together, quality time. It’s not about how long, but the day-to-day,” she said.
“His hospital room was filled with books, drawings, paintings, and music so it was an environment that bestowed him with love, care, and support.
“I think that really helped,” said Nina.
“It was a difficult and challenging time, then very slowly there was a small improvement.”
For the first time, on 24 March 2021, the bone marrow aspirate results showed Nikita had no minimal residual disease. It had taken five months for the transplant to eliminate his leukaemia. And two days later he was discharged – nine months after being admitted to hospital for the transplant.
“We are so grateful. Nikita is out of hospital, in remission, and doing so well,” said Nina.
For a few months, he had twice weekly visits to the hospital, and he was still on lots of medications, but these decreased slowly.
After being on total parenteral nutrition for so long, Nikita had to learn to eat again, experimenting with one new food type per week, starting with pumpkin, to see how his gut reacted. Two months, later, his naso-gastric tube was removed.
He also had to learn to walk again and within a month he was running and starting to jump.
“His development progressed so quickly. It surprised everyone,” said Nina.
“Looking at him today, you could never guess he was so sick before.”
“He’s active, energetic, social, and very friendly. It’s truly a miracle.”
Getting on with life now Nikita’s in remission
While the family is considering returning to Alice Springs, they will stay in Melbourne for as long as Nikita needs to go to the hospital. At the time the couple spoke to ALL News, this was once a month. There were other specialist appointments too, such as with a speech therapist who is helping with Nikita’s speech delay.
Nacho, who was running a bar/restaurant in Alice Springs before Nikita’s diagnosis, has been studying and plans to return to the profession he practised in Argentina, as a dentist. And Nina has continued to work remotely in her role as a project manager in community development.
“Some days when everything was too much, I was blessed to be able to put my mind elsewhere and get something done,” said Nina about her work which she is so passionate about.
For nearly four months, during the COVID-19 lockdowns, only one parent was allowed to be in the hospital with Nikita at a time.
“This was so hard for Nikita because he was still a baby.”
And it meant that around the clock, 24/7, Nina and Nacho took turns in making the five-minute dash from their baby’s room to the hospital entrance where they would say a quick hello to each other and swap over, so Nikita wasn’t alone for too long.
Nina’s mum came out to visit from France to meet her new grandchild and this too, was complicated by COVID.
Nina has found that now Nikita is out of hospital and his active treatment is over, “people assume it’s all done, everything is over”.
“But this is when everything catches up with you and it’s one of the hardest times for the carers,” said Nina.
“We were in survival mode so long that we didn’t pay attention to ourselves, our health and needs.”
“Leukaemia is such an intensive disease and it’s something you still carry even after you leave the hospital.
“You feel crushed as you reflect on what has happened. This is when we need the most support.
“Family and friends want to help but they don’t know how,” said Nina.
“Raising awareness and communicating openly is a way to reach the support we need”.
* Tumour lysis syndrome can occur as a complication during the treatment of cancer, where large amounts of tumour cells are killed off (lysed) at the same time by the treatment, releasing their contents into the bloodstream.
Need support? Please connect with our Blood Cancer Support Coordinators on 1800 620 420 if you need to talk, or to discuss how the Leukaemia Foundation can assist you with practical support. Alternatively, you may prefer to fill out our online referral form for us to reach out to you https://www.leukaemia.org.au/information-and-support-service-referral/