Seven-year-old Evie Armstrong was diagnosed with acute myeloid leukaemia after a trip to the doctors took a turn for the worse in August 2020.
Mum Katy said she is living "two different lives", looking after two-year-old daughter Beatrice at home in Scarborough whilst husband Simon stays with Evie at Leeds Children's Hospital due to Covid restrictions.
The pair are "really hoping" that Evie will be able to spend Christmas Day at home with family this year, after celebrating her seventh birthday away from hospital last week.
"Just to actually sit and have her at home was amazing because we weren’t even sure whether we would get a chance to do that again," Katy said.
Last year Evie had to spend both her sixth birthday and Christmas Day in hospital whilst recovering from a third round of chemotherapy.
Katy said that Evie enjoyed a "quiet day at home" on her birthday, playing with her younger sister Beatrice whilst dressing up as princesses and watching films together.
"It’s all about timing and medication and getting the opportunity for her to come home," said Katy. "Every moment like that, that we actually get to spend at home is very precious. Considering we didn’t have any of it last year, anything this year is just wonderful."
Unable to take Evie down to Boyes to see Father Christmas and his arrival at the harbour as they normally would, Katy said that Candlelighters have been there to support the family and provide a festive atmosphere in hospital.
"It’s the simple things, just the day-to-day things that you would normally do; if she was in Scarborough Hospital you would just be able to pop by and do all those things," she said. "For us, a trip to Leeds means organising childcare and getting there is a four-hour round trip. So just to know that if we need anything, they're there."
Katy said the family is planning to have Evie home on Christmas Day with dad Simon hoping to drive her home on Christmas Eve afternoon to enjoy a "full 24 hours of Christmas", returning to the hospital just after lunch on Christmas Day.
Last year Katy was unable to see Evie on Christmas Day whilst being locked down with a one-year-old, and said that the opportunity to see her this year would be "amazing".
She said: "It'll be lovely; a nice little Christmas dinner and open some presents around the tree. It’s the first year that her little sister's really kind of 'got' Christmas as well. So it'll be extra magical for her to share it with Evie.
"When she is home, Evie loves playing the big sister so it will just be a magical day to have, even though we don't get it for the full day, just the fact that you can wake up at home, Father Christmas will have been and there’ll be presents under the tree and that in itself is all we could ask for."
Evie is cancer-free; but fight continues
Evie was first rushed to hospital after becoming unwell just before her return to school after lockdown in August 2020.
She had received four rounds of chemotherapy by February 2021 with a fifth-round not heralding ideal results. In April, she had a bone marrow transplant to aid in her recovery but complications meant that she contracted graft versus host disease (GvHD), which is when particular types of white blood cells from the donated bone marrow attack your own body's cells.
In August, Evie was placed in the Intensive Care Unit after contracting sepsis and required the use of a ventilator. "So that was quite tough for us," Katy said. "It got to the point where there was the chance we could have lost her."
At Evie's sixth-month bone marrow biopsy, which checks whether there are any traces of leukaemia, no traces were found.
Katy said: "So she is in remission now. We can say she is cancer-free, but the complications that have arisen from the transplant is what’s holding us back."
Covid forced 'a new way of life'
Amid the Armstrong family's ordeal, Covid restrictions have meant only one parent can be with their child for most of this time, meaning that Evie has scarcely seen her immediate or extended family since her diagnosis.
"We've just had to learn to live a new way of life," Katy said. "It's been a challenge, but you don't really have the choice."
"Simon and I get to see each other occasionally when we swap over. Now that we’ve had time, he's actually been able to come home and we can sit and have dinner together, which is a novelty, as we've not done that since February."
Make Christmas 'magical'
Children’s cancer charity Candlelighters will be making Christmas magical again for children with cancer in hospital this year, providing Christmas activities and gifts, visits from Santa, as well as making sure the wards look like a winter wonderland with Christmas trees and decorations.
The charity will also be providing financial grants to the families of patients including those who are able to spend Christmas at home, ensuring that every child's Christmas is as special as possible.
This is all in addition to the year-round emotional and practical support that the charity provides to families on or post treatment and those who are sadly bereaved – for whom Christmas can be a very difficult time.
Emily Wragg, CEO, of Candlelighters, said: "Despite everyone’s best efforts, the sad truth is that not all children with cancer will make it home for Christmas, and many of the children we support, will spend a significant portion of their childhood in hospital.
"It is absolutely vital that we are able to support families like Evie’s not just at Christmas, but all year round, bringing light in the darkest of times. It’s thanks to the generous support of the public that we can be there for families and ensure that they never face these challenging times alone."
To make a donation, visit the Candlelighters’ website here.