Children's cancer... Felix's story
We knew that something wasn’t quite right with Felix. He was often complaining of pains in his heels, seemed particularly tired and rather over-emotional. He was just not his usual upbeat, cheery self. This went on for a month or so and we were quick to explain his symptoms away with the fact that it was winter, he was playing a lot of sport and we were entering a new pre-teen phase.
Following an unusual infection in between Christmas and New Year, we took him to the GP and requested a blood test as he seemed pretty run down and out of sorts. The GP was not overly concerned and said to book the blood test for the end of January to let the antibiotics do their job.
On Thursday 28th January 2016, following a blood test that morning, our 10 year old son Felix was diagnosed with Acute Lymphoblastic Leukaemia. Our world fell apart.
It was explained to us that the majority of the intense treatment would take place 30 miles away on the Piam Brown ward in University Hospital Southampton. We listened as we were told this was a children’s oncology unit and Felix would be admitted as an inpatient; one of us would be able to stay with him over night and that there was a lovely parent’s room where people often made friends for life. We couldn’t take it all in.
Felix was admitted to Piam Brown ward on Monday 1st February 2016. My memories of this time are somewhat blurred but what I do remember is that on the first night and subsequent nights I cried. I cried a lot. We were in a shared ward and I can remember trying to cry quietly but the fe-rociousness of my sobs were sometimes too consuming to hold in. The relief we felt when the op-portunity came for us to move into our own private room was immense. It gave us the space as a family unit, with Felix’s siblings and extended family, to try to make sense of our child’s diagnosis.
To talk, to listen, to comfort.
Felix with siblingsWe spent a great deal of time during those early months on Piam Brown ward. We felt safe there. There is a sense of understanding and empathy on the ward which exuded not only from the medi-cal staff but the house-keeping staff and other families. Whilst the resources of our own kitchen to use and an area for adults to relax made the day to day reality of hospital living easier to bear, the provision in terms of a ‘fun’ place to go in the play room and the school room gave Felix the oppor-tunity to try to ‘forget’ where he was. He had a space to go with his siblings and friends when they came to visit which was not a hospital bed and everything that went with that. He was able to play and laugh which was so important for him both psychologically as well as physically in those early days.
Felix spent many days, nights and weeks on Piam Brown where his treatment included a cocktail of chemotherapies, steroids and procedures. He recuperated there after he had his portacath fitted and after numerous lumbar punctures under general anaesthetic. Despite the brutal treatment and horrific side effects he grew to love the staff on the ward who always went out of their way to make him feel special. Their kindness and respect towards him and the whole family has made it all so much easier to cope and come to terms with.
Felix has finished his intense period of treatment although he will continue to be under the care of Piam Brown for many years to come. We miss the staff and friends we met whilst we stayed on the ward. The Piam Brown family are the only people who really know and understand what it means to have a child with cancer. They are the people who really know what Felix, his brother and sister, his grandparents, his friends and we have been through and what the road ahead looks like.
We are eternally grateful to The Piam Brown Ward; it will always have a special place in our hearts.
Fundraising and donations
You can support the Piam Brown appeal as a fundraiser individually, with friends, colleagues or even a larger group. You can find some handy hints on how to go about it here.
You can make a direct donation here (just be sure to mention your donation is for the Piam Brown refurbishment appeal).
Or you can text PIAM16 then your amount to 70070 to make a quick and easy donation via your phone.
Thank you so much for supporting us on this crucial endeavour. And please do remember to share your support on social media – every voice helps!
Download our full Piam Brown appeal case for support here.