One year ago, the Mitchell family never would have imagined they would be living a “normal” life at their home in Okotoks with their two young daughters.
Tanis and Kody Mitchell were immersed in a whirlwind of medical terminology and confusion, wondering what the future would hold for their one-year-old daughter, Lukah, who was battling for her life at the Stollery Children’s Hospital in Edmonton.
“We had no idea what each day would hold, so we never left her bedside,” said Tanis. “It was a long, long wait. It felt like a very long time.”
Medically speaking, their time at the hospital was seven weeks longer than anyone had predicted. When Lukah was flown to Edmonton for an emergency liver transplant on Oct. 24, 2018, her parents were told she would need a multivisceral, or multi-organ, transplant to replace her small intestine, liver, pancreas, and half the stomach.
Doctors warned the Mitchells it was statistically unlikely there would be a donor within the 12 to 24 hours they predicted she had, given the restricted blood flow to her organs.
“The liver shutting down was the biggest risk at that time,” said Tanis. “But she made it past that 24-hour mark and then continued on.”
It was touch and go for the toddler during those two months, as she fought for her life while her family waited for the fateful call that would change their lives forever.
“There was a lot of uncertainty, because every day was different,” said Kody. “It was a roller-coaster for the first three weeks, and then we were kind of into a marathon with them.”
Lukah’s story had started the month before being airlifted to Edmonton.
At the end of September, her first hospital visit was prompted by blood found in her diaper. Doctors thought it was a kidney infection and referred the Mitchells to a specialist, but the bloodwork indicated Lukah’s red blood cells were shedding somewhere in her body and the issue was not in the kidneys.
They were sent for further testing to rule out blood disorders and blood cancers – many of which would have been fatal. When no answers came, the one-year-old was sent for an ultrasound that revealed a large tumour in her abdomen.
Suddenly symptoms she’d had since birth, which seemed inconsequential at the time, began to make sense. Lukah had vomited regularly as a baby, about once a month, though she wouldn’t show signs of typical illness.
“She would wake up, throw up once, and then go back to sleep, and we’d be like, ‘What was that?’” said Kody. “And people would tell us, ‘Kids just throw up sometimes.’”
Lukah also had a fairly distended tummy, but they didn’t think twice because some babies just have bigger bellies, said Tanis.
It turned out the tumour had been growing rapidly through Lukah’s first year. Doctors went back to Tanis’ prenatal ultrasounds and found the tumour in utero, though it was so minuscule it hadn’t been noticed.
“It was the size of a grapefruit when it came out, and in a one-year-old’s body that’s pretty huge,” said Tanis.
The tumour had an artery flowing right through it, feeding it, which caused its growth, she said.
News of the tumour came just five days before Lukah’s first birthday, on Oct. 14. She would go in for surgery to remove the teratoma on Oct. 23.
“It almost felt like a relief finding the tumour because they had no idea what was wrong with her,” said Tanis. “So it was a happy discovery, but it was way more complicated than they thought.”
Complicated because when they opened Lukah’s abdomen they discovered the blood supply to her major organs had been cut off by the tumour and she had multi-organ failure.
That’s when she was flown to Edmonton and the Mitchells had their lives turned upside-down.
After nearly eight weeks in hospital, news of a multivisceral organ donor came at 2:56 a.m. on Dec. 16, and Lukah was taken in for a nine-hour surgery later the same afternoon.
She came out of the operating room around 1 a.m. and the Mitchells finally learned why their toddler had fared so much better than doctors expected while waiting for the transplant.
“Her body had compartmentalized all her organs, so nothing was escaping and there was no sepsis in her blood or anything,” said Tanis. “They were able to just scoop it all out and put in her organs. It went super smoothly, which we didn’t anticipate.”
The family would spend three more months in hospital while Lukah recovered from the transplant, to ensure her body didn’t reject any of her new organs.
There was a lot of learning from that point. Lukah is only the eighth child in western Canada to receive a multivisceral transplant, and the only female, so there wasn’t a lot of research that could be done.
“There were a lot of different levels, different liver numbers or kidney numbers,” said Kody. “By the end of it we had a decently firm grasp on medical terminology.”
The steep learning curve also included knowing how to administer Lukah’s host of medications. She will be on immunosuppressants for the rest of her life to prevent her body from attacking the foreign organs, as well as a number of supplements, antibiotics and other meds.
She also has an ileostomy bag to collect waste, because her small intestine was severely damaged by lack of blood flow, and a permanent central line to help administer medication and draw blood.
Despite a lot to take in, the family took it all in stride, balancing Okotoks life with hospital life. While Lukah was in the Stollery, her family stayed at Ronald McDonald House to be near her.
Their three-year-old daughter, Berlynn, was cared for by family and friends in Okotoks, who would bring her to Edmonton on weekends so the family could spend time together at Lukah’s bedside.
Post-surgery, Kody returned to work. He would be in Okotoks with Berlynn during the week, then every second weekend he would drive up to Edmonton while Tanis drove to Okotoks. They would meet halfway in Red Deer so Berlynn could get into her mom’s car.
On the other weekends, Kody and Berlynn would both make the drive all the way to Edmonton.
“Every two weeks we hung out for the weekend in Edmonton, in the hospital,” said Kody. “But there was a lot of being up in Edmonton by ourselves.”
It was difficult, but Tanis said they made it through knowing there was an endpoint.
“We just ran it like a marathon, knowing we had to do it for her,” said Tanis.
Now, after seven months of being home with Lukah, the Mitchells are settling into a new life filled with regular trips to the Alberta Children’s Hospital in Calgary, and speech pathology, occupational therapy and physiotherapy appointments in Okotoks.
They couldn’t imagine getting through the first few months, and even the time in Edmonton, without the community rallying around them, said Tanis. Since they’ve been home meals have arrived unannounced on their doorstep, as well as uncountable greeting cards and gift cards from people not just in Okotoks but the wider Canadian community – including people they don’t know.
Lukah’s transplant journey, which Tanis had posted about almost daily on social media, had taken the world by storm. It was overwhelming for the Mitchells to see how far their story reached.
“Someone had done up a picture of all the different countries where people were from on Facebook,” said Kody. “About 60 per cent of all countries were coloured in. So someone in that country was thinking or praying and knew about her story.
“That was a very humbling thing, to see that. It really did blow up.”
Tanis said the impact their story has had on thousands of people is one of many positives to come out of a difficult year.
“Even in the midst of the hardest parts, knowing it was changing people, and people were encouraged by it and encouraged by Lukah and her strength and her fight was worth it,” said Tanis. “I feel like it’s just given me a lot of hope for our family and hope for hard situations, and it’s given me such a different outlook on hardship.
“There is so much purpose in pain, and there’s so much growth than can happen.”
Kody said the experience snapped their lives into focus and made them rethink their priorities. It was a good reality check, he said.
“You get rocked to your core, and you realize that not a lot matters besides who you have, your family and friends you have,” said Kody.
The Mitchells said they’ll never stop worrying about Lukah as she grows up – they’re nervous moving into flu season, since she’s on immunosuppressants and will likely spend most of the winter fighting cold and flu bugs.
Doctors reassure the family Lukah is doing well and her progress is where it is expected to be, which gives them hope and eases some of the stress, said Tanis.
Now the focus is on bringing their daughter up-to-speed with her speech and motor skills, which are delayed after spending such formative months lying in a hospital bed. Lukah is making leaps and bounds in those areas though, she said.
“They don’t think there’s any permanent damage, so she’ll catch up, they guess by the time she’s three,” she said.
On the medical side, there will be a surgery in January to reverse the ileostomy as long as the colon is in good enough shape.
Starting this year, Lukah will have annual follow-up visits in Edmonton and there could be other procedures like biopsies in her future, but she shouldn’t require any further transplants because the new organs should grow with her, said Tanis.
The Mitchells are grateful to the family who provided their daughter with a new lease on life. They said the importance of organ and blood donation was made clear to them over the past year, and they encourage everyone to register themselves and their children for organ donation, and to inform their loved ones of their wishes should something happen.
Blood is always needed as well, and Kody said more people need to give blood regularly. Throughout her five months in hospital Lukah went through many blood transfusions, and she’s not alone.
“All the people we met and befriended through the hospital, a lot of their kids are still in the midst of it, going to the hospital constantly, being admitted, and they’re constantly needing blood transfusions,” said Kody. “It took me five minutes, Tanis 10 to 15 minutes, and you’re done, but it means the world – or life – to someone else.”
When asked what he would tell himself if he could go back to this time last year, Kody’s response was quick: “Buckle up.”
Tanis said she feels as though they were so naïve walking into a life-altering situation they couldn’t have seen coming, but it was almost better not to be prepared for it.
“If we would have known what was going to happen this time last year I would have been like, ‘There’s no way we could do that,’” said Tanis. “But you just do. You get through it.”
There was a lot of emotion in the hospital, everything from confusion to anger to grief, anxiety and sadness, she said. Many times they questioned, “Why us?”
But Tanis said looking back now, it’s easy to have a more positive outlook because of all the beauty that came out of such intense hardship – and the fact they can hold Lukah in their arms.
If their situation could teach anything to someone else enduring similar circumstances, Tanis said she hopes it’s that although it doesn’t seem fair most of the time you have to look for the beauty in the day-to-day and try to see the positive side.
“It’s all we have. You can’t change the situation,” said Tanis. “But you have to remember there is purpose and there is opportunity for really beautiful things amidst the pain.”