A little Bonnie lass’s battle with cancer

My name is Bonnie Spence. I have recently been diagnosed with an extremely rare form of childhood cancer. This cancer only affects 8 children a year in the UK and is called Rhabdoid Sarcoma Cancer. I have diagnosed with Stage 4 Terminal Cancer and I’m only 5 years old!

Let me tell you my story; My daddy, Caroline (stepmum), Jennifer (aged 8, stepsister) and Alistair (aged 2, half-brother) all live in the north east of England. My Mum, 2 full sisters and 2 half-sisters all live in Lancashire.

My daddy used to be a solider for 17 years (!!!) in the British Army and now drives a HGV wagons. Caroline is a midwife in the NHS. Although both of them are off work at the moment caring for me. 

A couple of days after my 5th birthday, between Christmas and new year I developed a small lump on my left arm. I went to the hospital and they said I had sprained it. I went away with my arm in a sling and told to rest it. After another few days my arm hurt more and more, so I went back to the hospital and had an MRI performed which showed a tumor. Nobody really told me what this meant but I had to go to another hospital far away to have a biopsy done. I went for this surgery with my daddy, it was scary but I was so brave. We were told we would have the results within 2 weeks however after 2 weeks the results weren’t back, but my arm was huge, I had lost the use of my left hand and fingers and it was causing me a lot of pain.

My daddy, stepmum Caroline and stepsister Jennifer were worried about me so we all went to the local hospital for pain relief. We were admitted straight away as they were really worried about my arm and if it was stopping blood flow to my fingers.

For the next few days it was crazy busy with lots of doctors, nurses, specialists all coming to see me and having tests and investigations performed. My family received some very sad news that my cancer in my arm has spread to my lungs and my blood stream. As the cancer has spread to other organs, I’m now classed as Stage 4 with terminal diagnosis. My main doctor is really lovely and explained things to me although I still don’t really understand what’s happening.

After a week, the specialists were really worried about my arm and how the tumor was starting to release toxins to other parts of my body such as my kidneys. A decision was made for me to have a left arm amputation above the elbow. When I woke up after the operation, I was really upset. I didn’t like not having my arm and was really worried about how I would play on the swings and if people would laugh at me. Daddy and Caroline made me feel much better and I’m coping with my one arm really well now.

After 10 days in hospital I started chemotherapy. Chemotherapy has made me loose all my gorgeous long blonde hair, which is making me sad. They have given me so many medicines to try and shrink the ones in my lungs to give me more time with my family but it won’t cure me. My aunty Clare has come over from Ireland to visit me and has been a big help as my half-brother and stepsister have needed some help too. My stepsister Jennifer (aged 8) has been a super support to me.

Finally after 21 days in hospital, I have been allowed to come home with Daddy, Caroline, Jennifer and my half brother Alistair. I have loved being back home!

Daddy and Caroline have been getting me new practical items such as a foot muff for when I’m in my wheelchair so my legs don’t get cold, and hats for me as I’ve lost all my hair. However daddy and Caroline aren’t going to work at the moment to help look after me as looking after me is really hard work. I have a lot of daily medications, temperature checks, NG tube and central line care, hospital appointments, chemo every 2 weeks etc.

Daddy and Caroline want to buy me the practical daily things that I need as well as some little luxuries to make things nicer for me. We would all like to go on some lovely day trips out as a family to make happy memories as well as helping with the increased bills coming in. Daddy is only on statutory sick pay (£120 a week) which isn’t covering much for me.

My mum has set up a gofundme page to help with some of the travel costs for coming to visit me up in the north east which is where I am now living for my treatment. Daddy and Caroline have felt that they need some help with the daily costs for caring for me.

Any help that anyone can offer would be amazing to help give me the happiest time that I can with the small amount of time I have left.