Claire Miller always had a suspicion in her mind that her son Thomas' sudden swollen lymph nodes were a sign of something more sinister than tonsillitis.
“Thomas was 10 years old at the time and had always been very healthy and never missed school,” recalled Claire, a mother of three who lives with her family in Northern Ireland.
“Thomas suddenly developed swollen lymph nodes and at first we thought it was tonsillitis, but a few days later, when he was nowhere near the swollen lymph nodes, my maternal intuition told me something more sinister was going on.
“My whole neck was swollen on both sides and my glands felt really hard. I was worried about what could be causing the lumps and swollen glands.”
Hours later, Thomas was admitted to hospital in Belfast in December 2018 and blood tests showed he had Acute lymphoblastic leukemiaIt is a type of cancer that affects white blood cells. It is fast-growing and aggressive, so it needs to be treated immediately.
“It was a massive shock to hear my child had cancer,” said Claire, a primary school teacher who is married to Derek and has two children, Matthew, 16, and Jenna, eight.
“I keep waiting for them to say they made a mistake, but it's real and it's happening to us.”
Thomas completed the first stage of treatment in Belfast, but, to his family's disappointment, blood tests in February 2019 showed his body was not responding to the chemotherapy.
Thomas' family were told their best option was a bone marrow transplant, but that it would take place in England and would require them to leave Northern Ireland for several months.
“Our older son was about to start his GCSE exams and our daughter has diabetes so leaving them behind would have been devastating,” Claire says. “But the hospital in Bristol where Thomas was due to be treated offered us a charity facility at the back of the hospital so we went to England as a family.
“We were all there for about a month, then Matthew went back to Northern Ireland to live with his grandparents so he could go to school, and the rest of us stayed for a few months.”
Thomas needed a match for a bone marrow transplant and all his family members were tested but there was no match, nor was there anyone on the UK or European bone marrow registries.
The family launched a massive social media campaign to encourage as many people as possible to register as bone marrow donors, and thousands did, but there was no suitable match for Thomas.
However, a perfect match was later found for Thomas in the United States – scoring 10 out of 10 – and the transplant took place in August 2019.
As soon as the Miller family arrived in England, Rainbow Trust A family support worker, Charlotte Coyle, has been appointed.
I It supports the Rainbow Trust's Christmas fundraiser, aiming to raise £125,000, which will enable the charity to support whole families whose lives have been changed forever by the diagnosis of a seriously ill child.
“Charlotte was a breath of fresh air, coming into the hospital full of smiles and joy,” Claire recalls. “She was such a blessing to us. Once Thomas was a little stronger and able to come to the family accommodation, he and his sister Jenna loved having her with them in the hospital and in the family accommodation.
“I remember the kids playing lots of board games with Charlotte and being very competitive. We still talk about her to this day and even have the 3D Snakes and Ladders game she gave us.”
Claire says Charlotte also gave her and Derek time away from the hospital environment and some much-needed respite: “We were living at home with our family, but it wasn't our home and England was a different country, away from anyone we knew,” Claire explained.
“It was great to have familiar faces there every week and Charlotte felt like a new member of the family.
“It allowed Derek and I to get out of the hospital, have a coffee and spend time alone together. Charlotte has such a close bond with the children and we trusted her completely and left the kids in her care knowing they would be safe and happy.
“Thomas was ready to interact and Charlotte came to pick him up at just the right time. Seeing her means he's not just seeing the same face.”
Thomas is now 13 and two years since his bone marrow transplant. Although he had some ups and downs after the transplant, he is now recovering well, returning to school full-time in September and joining a number of clubs to make up for lost time.
Claire says the family remember Charlotte and the Rainbow Trust fondly and will be forever grateful. “The Rainbow Trust are a fantastic charity who helped us out in our time of need,” she says.
“They know how to deal with the uncertainty of seriously ill children and they know what to say to parents on those very difficult and down days.
“By sharing the stories of other families who have been through similar experiences, Charlotte and the Rainbow Trust have given us much-needed hope and optimism that we too can get through these difficult times.”
Related article
Charlotte Coyle said: “I supported Thomas and his family whilst he underwent a bone marrow transplant in 2019.
“At first, I supported Thomas in the hospital, as his treatment meant he was unable to leave his room. I visited him at least once a week, and during our visits we always had fun playing video, board and card games.
“This provided a fun distraction for Thomas but also gave his parents the opportunity to have a break and get out of the hospital environment for a while.
“It was a joy to be able to support a family when they needed it most.”
How to donate
When a child is diagnosed with a life-threatening or serious illness, it changes a family's life and often leaves them feeling bewildered, confused and overwhelmed.
I teeth, 2021 Christmas Appeal The aim is to appeal to generous readers to raise £125,000 to provide vital practical and emotional support to families with life-threatening or terminally ill children.
Here's what your donation will give you:
- For £3 or £5 we can provide arts and crafts and activities.
- For £10 you can get yourself a box of memories.
- £15 will get you a great day out.
- £26 provides one hour of support.
- A virtual support pack is available for £60.
- £1,780 would feed a family for a year.
