Ralph was diagnosed with T-Cell Lymphoma at the age of six. It was a complete and utter shock to the whole family as Ralph had always been a very healthy little boy. He had been unwell with suspected tonsillitis for a few weeks.
We’d been back and forth to our GP and an overnight stay in hospital but it wasn’t until we were on a family weekend in London, that Ralph was taken seriously ill. A chest X-ray picked up several large tumours in Ralph’s neck and chest and we were told we had a very sick little boy. We were immediately transferred straight back to Leeds, where more investigations took place. Once we had a diagnosis, Ralph started day one of three and a half years of gruelling chemotherapy.
Looking back, those first few weeks were so frightening and traumatic, it all feels like a bit of a blur. It was a real struggle, my husband and I took turns to stay on the ward for the initial six weeks of treatment with Ralph, while also trying to maintain some sort of ‘normal’ life for Ralph’s three sisters at home. Ralph became unwell and immobile very soon into his treatment. It was emotionally challenging. Not only were we faced with a son with a life-threatening illness our girls were upset and missed having us all at home as a family. My husband had his own business to run so still had to try fit some work in where he could. Our living costs increased and I don’t add up how much we spent on Lego just to get through each treatment!
I think if you were to ask Ralph’s consultant about our journey, she would probably say from a medical perspective it was fairly textbook standard. On arrival, Ralph was extremely ill with not much time on his side, but fortunately, he responded well to treatment, he tolerated the chemotherapy fairly well and made it out the other side. From a parental perspective, it felt like anything but a textbook situation. Every moment of the three and a half years of treatment I worried I was going to lose him. The chemo is aggressive, it made him extremely sick. Ralph was given large amounts of steroids which made him double in size, unable to walk and really effected his mood making him angry and depressed. Scans, X-rays, blood transfusions, infections, and temperatures, midnight dashes to the hospital at high speeds, blood clots, Sepsis, side effects, bad news and good news became our day to day life, a new normal.
My first encounter with Candlelighters was at a fundraiser in #Harrogate, two weeks before Ralph was diagnosed. I listened to a lady speaker who had sadly lost her son to cancer, it was a heart-breaking story. I had absolutely no clue that two weeks later I’d be sat in the ward she spoke so affectionately about.
My second encounter with Candlelighters was day two on the ward when one of the team offered their support and came to play with Ralph. Since that day the Tasker Family and Candlelighters have been firm friends!! The level of support they have given us has been immense. From financial support in the very first weeks to the support they still give us now, even though Ralph has finished his treatment. Candlelighters has helped the whole family in a way you couldn’t think imaginable. Whether it’s the Dinner Lady Elaine with the sweetie trolley on the ward, the funded Play Team entertaining Ralph during the long days in a hospital bed; helping with his sister when I had to have them with me on the ward.
Chemo doesn’t stop for Christmas and birthdays, but the Candlelighters team always made sure a birthday spent at the hospital was well and truly celebrated with presents and a party. Movie nights, pizza nights, face painting, it’s Candlelighters that made the ward a warm happy place, which we were proud to call our second home. At the Day Clinic, they were just as present. There to hold a hand or provide a distraction when needed. Our whole family have accessed days out organised by Candlelighters including Dads Group, Mums afternoon teas and Siblings Groups.
When you have a child with cancer it’s like living in a bubble and the Candlelighters groups provide the perfect environment to chat with other parents in the same situation out of the hospital setting.
During the pandemic, Candlelighters have been a great source of support, keeping in touch via their social media platforms. We’ve attended online group classes, craft sessions, but most importantly the whole family have been able to access the Talking Therapy support which has been vital as Ralph has faced challenges connected to finishing his treatment. The Candlelighters Instagram page always cheers us up, it gives us great fundraising ideas… Ralph and I have big fundraising plans once the Covid restrictions are over!
Having been through Ralph’s cancer journey over the last four years, some of it being during a pandemic, I think it’s ever more important that we raise awareness of #ChildhoodCancer. We were lucky Ralph got taken to hospital when he did, as a few hours later it could have been a very different story. It’s so important parents get listened to when they know something “isn’t right” with their child. The pandemic has made access to GP’s and hospital seem more challenging but I am very keen for awareness to be raised so families can access the amazing medical teams in our country who are ready and waiting to provide world-class care and treatment for any child who sadly is diagnosed with cancer. It’s important for people to know, the common symptoms of childhood cancers and to know they can keep asking for answers if the illness doesn’t get picked up straight away. I also think it’s important for the children living with cancer to meet other children and families living with or who have previously been through it.
To someone thinking of fundraising for Candlelighters, I would say, never in a million years would I have thought I would have been in this situation, and I certainly didn’t think it was going to be me when I was sat at my first Candlelighters event. I cannot put into words just how thankful we are to Candlelighters for everything they did to make our journey over the last four years a better one. The Candlelighters team put a big arm around the whole family. The Covid situation has made this much more difficult and really did outline to me just how much their presence is felt on the ward and in the Day Clinics. From a sweet from a trolley to helping to plan children’s funerals the whole team go the extra mile for all the families.
They support you during your whole journey and forevermore; your whole family can access any support you may need. That really is outstanding. It’s so important during this extraordinarily difficult time that families living with childhood cancer can continue to receive this much-needed support.
Cleo, Ralph’s Mum.