My wife Kerry and I have had first hand experience of dealing with the pain and anguish caused by Rhabdomyosarcoma. Thanks for taking the time to visit my highly personal JustGiving page
Raising funds for The Chris Lucas Trust. A charity dedicated to finding a cure for Rhabdomyosarcoma.
Rhabdomyosarcoma. A rare childhood cancer that affects the soft
tissue. Fewer than 60 children are diagnosed with rhabdomyosarcoma in the UK each year. Most of them are younger than 10 years old.
I have put off writing this web page for 3 months. I knew that I wanted to create a Just Giving Rhabdomyosarcoma page, but I needed to find the courage to write my thoughts down. Over the past 18 months, I have found it really hard to talk about my daughter’s cancer. Yes, the fantastic doctors at Birmingham Children’s hospital have said she is free from cancer, however she will need frequent check-ups throughout the rest of her childhood to make sure this terrible cancer never returns. The treatment for Rhabdomyosarcoma has barely changed over the last 12 years, purely down to the rarity of the condition. As a consequence, most children that experience this form of cancer receive treatment of Chemotherapy, Radiotherapy and surgery.
The last 18 months have irrecoverably scarred both Kerry and I, but we know we need to focus on the future. That is why a group of my dear friends and myself are going to be running the great north run this year to raise money for the Chris Lucas Trust, a charity that focuses 100% in trying to find a cure for Rhabdomyosarcoma.
I have always been a glass half full type of person. When Kerry told me that she thought my daughters eye looked a bit different, my natural instinct was to just dismiss it. ‘Maybe that’s the way it has always looked’ I suggested. After all, how often does a parent examine the inside of their children’s eye lid? It might have looked a bit different to her other eye, but like many lumps, bumps and knocks that our children experience I assumed that it was something that would fade from our consciousness within a week and everything in our family life would continue as before.
I couldn’t have been more wrong.
How do you break news to a mother and father that their daughter has cancer? Not an easy discussion and when we think about a hard day in the office and the difficult conversations we have with work colleagues or customers at work, I am not sure I can think of any conversations that come close. I don’t remember the words that the consultant used. The meeting was all a bit of a blur. I remember Kerry crying. I remember coming over all cold. And I remember getting a sinking feeling that made me feel physically sick. I remember Kerry saying straight after the meeting that she knew we were going to get bad news. She noticed that the Nurse one of the nurses in the room was wearing a MacMillan badge before the consultant even opened his mouth. I guess that goes to demonstrate her level of observation. She picks up all of the detail. If Kerry didn’t have this 6th sense level of focus, I suspect we might not have noticed the growth in my daughters eye or alternatively we might have just brushed over it, and then passed the point of no return..
I could go in to a lot of detail about the treatment. The lows, the even lowers and the even lower lowers. The medical staff that looked after my daughter were amazing in every way, however the treatment for childhood cancer is abhorrent. To see your daughter go from a beautiful fun loving 4 year old with long curly hair, to a fragile, ghost coloured child that has no hair and has a permanent tube flowing in to her chest for the administration of medication is crushing. As a parent, you lie in bed wishing you could swap places with your daughter whilst feeling pangs of guilt flowing through your veins, wondering if there was something that you could have done to prevent it.
I have suffered denial and frustration, but the overarching feeling has been fear. To be involuntarily on the childhood cancer roller coaster is immensely difficult and one where you literally have to take each day as it comes. As much as your child’s health can fluctuate from hour to hour, you have to literally take a deep breath, pull yourself together, and put one foot in front of another and start the journey.
After many ups and downs during treatment, my daughter was diagnosed as being free of cancer in October 2018. Many people have congratulated me that she is better, however I am not sure that either Kerry or I will ever feel that we are free from the cancer nightmare. There is no reason why it should come back, and there are regular check-ups at Birmingham Children’s hospital to ensure that no cells ever regrow. However the emotional scars are irrecoverably deep, and not something that I think a parent can recover from.
As for my beautiful Daughter JMJ, she is a happy bouncy, full of life 5 year old. Just as god designed her to be. We thank our family and friends and most importantly the doctors and nurses at both UHCW hospital and Birmingham Children’s hospital for all of their care, support and attention.
I am not designed to be a runner, however the Great North Run is a fantastic opportunity to raise money for a HUGELY worthwhile charity – the Chris Lucas Trust.
The charity is 100% focused on finding a cure for the cancer that faced
both my daughter and many other families across the UK every year. I hope you will find it in your hearts to support me, and my fantastic friends Brett, Dave, Robin, Jo and Ben as we pound the streets of Newcastle in September to raise money for this magnificent cause.
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