My name is Naomi, and I’m Eli’s Mum. I’m 27 years old. Eli was two and a half when he was diagnosed with acute lymphoblastic leukaemia (ALL). He was diagnosed on the 18th of September 2019. He is now four years old, and due to finish treatment the day before his sixth birthday.
At the time of diagnosis, I was petrified, I thought it meant that I would lose Eli, my first and only child. The day he was diagnosed I was due to start my dream job as an assistant psychologist working with children who have experienced trauma. Shortly after diagnosis, I was worried about how I would cope financially, not being able to work, and also how it would impact my ongoing mental health. The first year was hard, I didn’t allow myself to focus on the diagnosis itself, but rather the treatment plan, and even now I haven’t fully accepted that Eli has cancer.
From the minute we went to the hospital until now, I have not had the chance to sit down and acknowledge the fact that Eli has leukaemia, partly due to not wanting to compromise all the hard work I have put into my mental health, but also because Eli’s treatment journey started the minute we arrived at the LGI before he was even formally diagnosed. Our journey has consisted of 40 mile round trips to the LGI once a week, sometimes several times a week, blood and platelet transfusions, lumbar punctures, chemotherapy, hair loss, mood swings, pain, worry, and anxiety. We have had a relapse scare, but we have also had our fair share of good news.
Candlelighters has supported us from the minute we arrived on Ward L31. When you arrive on the ward, you are given a welcome pack, with details of your child’s condition. You meet their medical team i.e. their doctor, nurses, healthcare workers, alongside the community teams, play workers, social workers, community nurse specialists, and Candlelighters. I became aware of Candlelighters almost immediately and was told they were available at any time, for a simple cuppa and a chat, or ten minutes of respite whilst on the ward.
Over the past 18 months, Candlelighters have supported us by providing a £600 grant when Eli was diagnosed due to not being able to claim Disability Living Allowance for the first three months. They also provided us with a Christmas grant during the first two years of treatment. We have been gifted two holidays during our treatment. We were planning on taking one last year, but due to Covid, we were unable to go, but we can’t wait until it’s safe enough for us to go!
Due to the amazing fundraising and donations, Candlelighters have been able to put on events like the Christmas Party, which we went to and it was AMAZING! Candlelighters are not just a charity that provides physical or financial support, like events or holidays, but the emotional support that they provide is invaluable.
Candlelighters have become a part of my family. The little things they do such as message you to check you’re ok during this time; allowing parents to have a quiet space in the Day Clinic where you can have a fancy coffee, and a chat, or in my case a rant! This is the first time we have been 100% supported by a charity, and I never knew just how much they do for people going through difficult times in their lives. Being supported by Candlelighters has enabled me to speak up about our experience with childhood cancer. They have made me passionate about making a difference, seeing just how much they care. I wanted to stay in the shadows and hideaway, but Candlelighters enabled me to face my fears, and jump headfirst into an adventure.
We are yet to access some of the online support Candlelighters have set up during the pandemic, but I am in constant communications with Candlelighters, as it keeps me sane, and gives me something new to focus on. Telling my story has definitely eased the stress of ALL (acute lymphoblastic leukaemia).
Now that I am confident to speak about childhood cancer, I am always finding ways of raising awareness. At the end of last year (October) I raised awareness by braving the shave, and I shaved off 90% of my hair. By doing so, I raised almost £2000. As a result, we were featured in the local paper, which raised even more awareness for Candlelighters and childhood cancer. The support from the fundraising team has been amazing, and the support we have received as a family has been incredible.
If you’re thinking of fundraising for Candlelighters, DO IT!!! It will be the best decision you have ever made. They will support you along the way 10000%, and the money will go towards funding ESSENTIAL cancer research, provide financial grants to families to ease the burden, provide holiday respite, 10000 cups of tea for parents attending Clinic or on the ward, funding play workers to interact with children, the list is endless. It will truly make a difference to so many lives, including ours. Being a part of Candlelighters has been the best thing to have happened to us during the worst time of our lives.
It can rain on us for the rest of our journey, as long as we have our Candlelighters umbrella!