Posted on Friday 6 December 2019
“Christmas will be special for us this year, with it being at home as opposed to in a hospital makes it all the more special.”
Ruby was just three years old when she was diagnosed with anaplastic large-cell lymphoma – and cancer. This Christmas, Ruby is starring in Signet’s Pebbles the CLIC Sargent Christmas bear campaign. Here, Ruby’s dad Paul shares her story.
Ruby became ill in February 2017 when she was two years old. It took a really long time to work out what the problem was. My wife Nicola noticed raised lymph nodes in Ruby’s groin, but when we told the doctors, we were assured that there was nothing to worry about. They said it was probably an infection and Ruby was given antibiotics.
However in the April that year and as time went on, Ruby deteriorated. She was pale and lost weight. In July, doctors realised that it wasn’t just an infection and said she had juvenile arthritis.
Ruby went on a programme of treatment which was similar to cancer treatment and she responded well to that and her symptoms calmed down. Then in December that year, she got worse. She had gone yellow in her eyes and was admitted to Noah’s Ark Children’s Hospital in Cardiff, and then to Bristol Children’s Hospital.
Ruby was taken into intensive care and we received a phone call at 3am one morning where the doctors told us things were looking very bad and we needed to go straight back to the hospital.
They didn’t know what was wrong. It was either cancer or an infection or virus that was out of control. If it was cancer, chemotherapy might do something to help. If it was an infection or virus, chemotherapy will escalate it. We were told there was a slim chance she would survive and were advised to bring her brother and sister down to say goodbye to her.
Ruby was then diagnosed with cancer. When she was diagnosed, it didn’t change things that much. But it did give us a level of certainty that we hadn’t had until that point. We knew it was serious; we knew it was life threatening, but knowing what it was gave us a level of hope as there was treatment available.
With chemo, Ruby started improving. During intensive care she had been suffering with multiple organ failure, but now her numbers started improving and her kidneys and organs started functioning again. Ruby then moved to an oncology ward and spent the next three months getting better and better.
Whilst Ruby was on treatment, we received support from CLIC Sargent. I don’t know how we would have functioned if we hadn’t had help from CLIC Sargent. I couldn’t afford to live in a hotel to be near Ruby at the hospital and the family accommodation we had been staying in was very small. My other kids Finley and Emily had to sleep top and tail in a bed, in order to visit their sister.
But on the first day when Ruby was diagnosed we were referred to CLIC Sargent and they gave us accommodation in Sam’s House in Bristol. It has a lot of room so my other children could stay, which hadn’t been possible before. Without Sam’s House they wouldn’t have been able to visit very often.
You could talk to other families going through the same thing at the house in a way that you couldn’t with family and friends. Having people around you was really important. We got to know other families really well and have remained friends.
CLIC Sargent saved us from being in a disastrous situation."
When Ruby was receiving treatment, some of the time she was able to stay with us at Sam’s House and go to hospital for treatment in the daytime. Staying at Sam’s House made the whole thing do-able. We live more than 40 miles away which is an hour in light traffic but a lot longer when it’s busy. Having to leave home at 7am, spend all the day at the hospital and going home at 10pm, you are running the risk of having an accident due to exhaustion or not seeing your child as much.
As Ruby’s treatment has turned to monitoring, Ruby has regular MRI scans now. With CLIC House and Sam’s House in Bristol we could stay overnight and the hospital was just a 10 minute walk away. Otherwise, we would have had to wake her up at 5.30am and leave home at 6am.
My work was brilliant in supporting me but the additional costs were a worry. With Disability Living Allowance you have to wait three months before you can claim it, then it’s a long wait and you can’t get it backdated. CLIC Sargent helped us with the paperwork. The form is 50 pages.
When Ruby had a pneumonia scare we knew help was there if we needed it too. CLIC Sargent saved us from being in a disastrous situation.
Ruby’s personality has grown because she has dealt with some very tough things. She thinks that is just a normal part of growing up. She saw new faces every time the nurses’ shift changed and she is used to seeing a lot of different people. She is really confident with people. On her first day at nursery, when other kids were in tears, she went storming in to meet new people. It’s made her strong. The only bad thing is that she has been accustomed to getting presents while she was in hospital and she still expects them now!
Ruby started reception at school in September and wants to be a nurse when she grows up.
Christmas will be special for us this year as we didn’t know that we would be spending it together with her as a family, also with it being at home as opposed to in a hospital makes it all the more special.
Pebbles the bear is available now from any H. Samuel or Ernest Jones store, or by clicking here. For every Pebbles bear bought, H. Samuel and Ernest Jones will donate at least £3.50 to CLIC Sargent.