Just hours after Rachael was born on 22 November 2020 during the Covid pandemic she had to be urgently transferred to Addenbrooke’s Hospital in Cambridge.
A day later, she was in emergency surgery. What had at first appeared to be a twisted bowel was, in fact, infantile myofibromatosis – a rare condition that causes tumours to grow in the skin, muscles, bones and sometimes organs.
Her mother Katie Young told The i Paper: “She had her operation and they found hundreds of tumours, they were affecting every organ in her body including her brain.”
Days later they were given the devastating diagnosis, as the condition can be life-threatening when the tumours are so widespread.
“When we got that diagnosis, my initial thought was, ‘I just want to take her home,’” said Katie. “It seemed so daunting, it didn’t seem particularly hopeful.”
But this wasn’t possible because although Rachael’s tumours were benign, she still had to undergo a long course of chemotherapy which started almost immediately.
It meant the newborn was not able to go home or meet her little brother Henry, who was just two at the time, for the first five weeks of her life.
For Katie and her husband Simon, from Bedford, the reality was long stays in hospital with her.
“On Christmas Eve, they said, ‘Do you want to take her home?’” said Katie. “It was the first time she had met her brother.”
It was during this first intense five-week period the family was introduced to Jess, a Young Lives vs Cancer specialist social worker.
“She was just like a proper guide for us,” said Katie. “I don’t know how we would have coped without her and Young Lives vs Cancer. I don’t think we would have been able to spend really much family time together without them.”
Jess was able to give the family the support it needed to make informed decisions about Rachael’s treatment and care as she underwent chemotherapy, and to help talk about the situation with Henry.
When she contracted an infection after her Hickman line was put in for chemotherapy, the family thought she would have to be admitted.
“Jess and Young Lives gave me the confidence to believe I could care for her at home,” said Ms Young. “It’s such a valuable commodity. The medical team is crucial but I’m so sure that treatment is so much more successful if there’s a focus on the well-being of the family.
“Young Lives really focus on the family.”
Rachael needed almost two years of chemotherapy, and during that time Jess was on hand to help with the logistics of how the family would get to and from the hospital, what to discuss with the doctors and made sure she saw them each time they came to the hospital.
She was also able to advise Katie, a secondary-school English teacher, on what was the best thing to do regarding her maternity leave and returning to work while Rachael was still having chemo.
Rachael’s treatment has ended now and the lively five-year-old has started in reception at primary school.
“We are really lucky because there’s lots of indications in Rachael’s case it might be developmental and so it won’t come back,” said Ms Young. “At the moment, she doesn’t have any symptoms.
“She is three-and-a-half years post treatment but she still has six-monthly medical reviews.”
But their experience with Jess and Young Lives vs Cancer has prompted Katie to join the charity’s Voice Board, made up of young people and family members who have experienced cancer, cancer treatment and its impact.
“It’s not a community anybody wants to be part of but there is a powerful connection between people who have experienced it,” she said.
The board helps trustees and directors to make decisions within the charity based on lived experience and to shape how it will go forward.
Her participation is a token of her appreciation of the work the charity has done to support her and her family.
“What really matters in life is your family and having closeness and time with them,” she added. “Young Lives vs Cancer provides a support network so that even when you are going through a horrible illness you can focus on what really matters.”
For Rachael’s parents, life has now returned to a new kind of normal.
“One of the things you don’t now is what the effects might be going forward,” said Ms Young. “Rachael has a lot of scarring in her body and there are lesions in her brain, so we always keep an eye on her.”
But the big news for the little five-year-old this Christmas is that all attention will be on her for a very different reason.
She has a starring role in the school nativity play as Mary.
A Home for Christmas appeal
The i Paper is proud to support Young Lives vs Cancer through its Christmas Appeal, A Home for Christmas, helping to make a lasting difference for families with children facing cancer.
The appeal aims to raise £100,000 to ensure the charity can continue providing vital, tailored support – from financial guidance and emotional care to its “Homes from Home” accommodation centres, which allow families to stay together near hospital during treatment.
To donate, visit younglivesvscancer.org.uk/i-appeal or text IPAPERTEN to 70580 to donate £10 or IPAPERTWENTY to donate £20.
*Texts will cost the donation amount plus one standard network rate message.
What your money could buy
- £5 could print five storybooks to help a child understand the cancer treatment they are having.
- £10 could buy food so families can cook a meal to enjoy together away from the hospital canteen.
- £18 helps power a Home from Home for a day.
- £52 means a social worker could provide emotional and practical support (such as applying for financial help or attending difficult appointments) so children and their families don’t have to face cancer alone.
- £70 could pay for a family stay in a Young Lives vs Cancer Home from Home so they can be near their child in hospital with cancer.
- £100 could fund a hardship grant for families.
