Thanks for taking the time to visit my JustGiving page in memory of Marc Edwards.
Anthony Nolan is an incredible charity that help save lives. They have helped our family in immense ways over the last 10 months and we want to give something back. As a family, we are raising money for Anthony Nolan and we want to raise awareness of blood cancer. Until you are affected by cancer, it is something you don’t tend to acknowledge. In the memory of our lovely Marc, we want to share his story and reach as many people as possible.
Being told your loved one has Cancer will always be a day that sticks in your mind. In April 2016, Marc was diagnosed with Acute Lymphoblastic Leukaemia (ALL) and our world as a family changed forever.
ALL is a very rare form of blood cancer that affects the immune system, the bodies white blood cells are immature and they work inefficiently, these are called lymphoblasts. These lymphoblasts are unable to fight infection, they fill up the bone marrow and block the pathway for new and healthy cells to be formed.
Marc was a very special case, he had T-lymphoblastic leukaemia (T-ALL) which is very aggressive and progressive, it is not usually seen in adults. He began his treatment and underwent 2 cycles of chemotherapy, all with a huge smile on his face! After various rounds of chemo, we were told that he had 2 options: to walk away and take the time he had left as the chemo hadn’t worked, or to try a novel and a very dangerous drug Nelarabine (which in itself, can be fatal). Marc, being the fighter he was, said bring it on. This drug is risky, it can cause very severe side effects such as renal failure, neurological changes and limited mobility but Marc never dwelled on negatives in life, and even when the first round of this treatment did not work, he pushed his consultant to give him more, he was never going to let it beat him. Bloodwise the official charity for blood cancer research, help to raise funds for expensive and one off treatments like this. The funding enabled us to have more quality time with Marc, and for this we are eternally grateful.
The second round of Nelarabine was mixed with two other chemotherapy drugs and thankfully it worked! Marc was one the first people in the UK over the age of 21 to receive this treatment, he was always going to make history.
We were told that Marc needed a stem cell transplant in order to have any chance of survival. This is where Anthony Nolan come in. They are an amazing charity that search for individuals willing to donate their blood stem cells (bone marrow) to those who need this to survive. Finding a donor is a complicated process, but Anthony Nolan have an amazing team who help to find the perfect match. Marc’s match was found within a few weeks, a 100% match from an incredibly brave 19 year old girl in Germany. Even though there are many assumptions about this process, a transplant is virtually painless, and is just like giving blood. The stem cell donation that Marc received gave him another chance at life. He was in isolation for months, his body trying to rebuild and recover from everything he had been through.
Unfortunately, the cumulative effect of the Nelarabine caused him motor and sensory neuropathy, which damaged the nerves that helped him regulate touch, temperature and movement. He struggled to walk, but this did not phase him. As a family we helped support him to learn to walk again, and he never once gave up, always striving to give it his best and never let adversity define him.
In January, we were told that Marc’s transplant had worked, and he was 100% free of leukaemia cells, we were euphoric. He had fought ALL, but we always knew he could. A few days later, he became ill and we found out that the cancer had come back, far more aggressive and was untreatable. Marc was not frightened, he was optimistic for what the future held for the rest of the family and fought till the very end. Sadly, he passed away exactly 4 weeks later, and 10 months since his initial diagnosis. He was always great at having control.
Before this experience, we had never heard of Bloodwise or Anthony Nolan and we feel very ashamed of this. When nothing is going wrong in your life, it’s easy to walk around with your head down thinking “that will never happen to me”, and it may never happen to you, but it takes two seconds to help someone else.
How you can help:
> Join the Anthony Nolan register if you are 16-30 and are able, you can help save someones life
> Sign up to be a blood donor if you are aged 17-65
> Donate what you can to this page in Marc’s memory
During this whole experience, Marc overcame so many obstacles both physically and emotionally and never once complained, his positivity was infectious and will live on forever through those who knew him. As a family, we are going to continue this by sharing his story and making people aware of what charities such as Anthony Nolan and Bloodwise do. We will never be able to thank Anthony Nolan enough for the extra four and a half months they gave us with Marc, but this is a start, please give/do what you can…
The Edwards Family