Posted on Wednesday 21 August 2019
Parents pride as daughter Poppy picks up her GCSE results following brain tumour journey
Poppy, 16, is picking up her GCSE results this Thursday, August 22. She was diagnosed with a brain tumour when she was just 14-months-old, and over the years the tumour has come back five times. Last year, Poppy had a 10-hour operation to remove some of the tumour again and had six weeks off school. Here, Poppy’s mum Lisa shares her story and why, no matter what her exam results, Poppy’s parents are so proud of everything she has achieved.
“Poppy was our first child and when she was 14-months-old, I took her to the GP with a chest infection and there they noticed her right eye wobbled. They referred us to the local hospital where they told us that she was blind in that eye. We were in complete shock.
We were sent to Birmingham Children’s Hospital for more tests and were told there was something behind her eye and they needed to do a brain scan. At that point you just know, I asked them if they were looking for a brain tumour. They said that they were and I was sick – physically sick in the room with the shock of it.
It all happened quickly after that. They found a massive brain tumour. We couldn’t process what we were being told because there didn’t appear to be anything wrong.
We saw a brain surgeon the next morning who told us that they wouldn’t be able to remove it all because it was attached to the brain stem, had major blood vessels through the middle and the optic nerves crossed through it but he said he would try his very best.
About 10 days later they operated. She was in surgery for eight hours in the end. I hadn’t imagined how she might look after because I couldn’t, I didn’t want to tempt fate. She came back with all sorts of drips and tubes. She looked so poorly but she was alive.
Once histology results were in, they told us that they’d found a benign brain tumour and hopefully Poppy wouldn’t need any more treatment, they’d managed to remove 60-70%, and they would just scan her again in the next few weeks. We felt like the luckiest people in the world. We started to focus on fundraising, what we could do to help.
Poppy was brilliant, she recovered so well, it was amazing. But they scanned her seven weeks later and her oncologist said the whole tumour was back and said they’d have to operate again and she would need chemo. We just couldn’t believe it.
Again she recovered amazingly. She came home after four days and then started chemotherapy a couple of weeks later. She had chemo three days a week and was very, very poorly. After that, we carried on with three monthly MRI scans which showed that the tumour had only shrunk once on chemo, so it didn’t have massive effects but it bought Poppy some time.
They scanned her after three months but disappointedly her tumour had doubled in size, so the next step was radiotherapy. But bit by bit it came back. She had a mini-stroke when she was nine too.
Eventually the consultants said Poppy had to have surgery again but they said that they could remove all of it this time which was a miracle. The radiotherapy had broken it down and techniques and surgeries had advanced since she was first having treatment.
It was harder to talk to Poppy about it by this time in 2012. When she was a toddler she was easily distracted, didn’t really understand or think about what was going on but now she kept saying what if I die, things like that. She was amazing though and she got through it again.
Poppy had a scan in February 2018 and they rang us to tell us the tumour was growing too quick and the brain surgeon wanted to operate.
Before surgery, Poppy said that she didn’t want any ‘get well’ cards and people could donate £1 to our JustGiving page instead. The machine that was used for her surgery when she was nine was really out of date by this point and they needed a new one which would cost about £60,000, so Poppy said she wanted money on JustGiving to go towards that.
Because Poppy’s tumour is a childhood tumour, they think it will stop growing eventually.
Last year, we went to the CLIC Sargent residential to try and get more involved with the charity. It was amazing, not only for Poppy and us as parents but also for her sisters. Poppy really wants to be involved now that she’s older and can do things for herself. It’s her way of helping.
We had amazing support from everyone, family and friends, and the hospital and we had a Sargent Cancer Care social worker. I remember them helping me to fill in a DLA form all those years ago and giving me a grant.
We also had four wonderful holidays at Malcolm Sargent House and received such amazing support there. We kept in touch with loads of families we met there, it was wonderful.
When Poppy was studying for her GCSEs this spring it was really tough. She missed six weeks last year which is not helpful during GCSE years. Hopefully, she’ll get through them.
If she doesn’t pass them it’s not the end of the world, there are other paths and we know she’ll find a way. We are so proud of her.
Poppy has decided that she wants to be a paramedic or occupational therapist; she wants to do something to help other people. She has a place at the local college to do a health and social care course.
Poppy was recently nominated for a Spirit of Tamworth Award where they asked her to do a speech in front of 300 people. There was an incredible line in her speech that sums her up, “At times I think why me, but then I also think why not me if I can make a difference.” “
Notes to editors
For more information about CLIC Sargent please contact Jessica Rees at firstname.lastname@example.org or call 0117 311 2659.
About cancer in children and young people
Today, 12 more children and young people in the UK will hear the devastating news that they have cancer. Treatment normally starts immediately, is often given many miles from home and can last for up to three years. Although survival rates are over 80%, cancer remains the single largest cause of death from disease in children and young people in the UK.
About CLIC Sargent
When cancer strikes young lives CLIC Sargent helps families limit the damage cancer causes beyond their health. CLIC Sargent is the UK’s leading charity for young cancer patients and their families. We provide specialist support, to help and guide each young cancer patient and their family. We will fight tirelessly for them, individually, locally and nationally. For more information, visit www.clicsargent.org.uk
Note to sub editors
Please note that the name ‘CLIC Sargent’ should not be abbreviated to CLIC, and that the word ‘CLIC’ should always appear in capitals, as above.
A study from the Institute of Cancer Research and The Royal Marsden NHS Foundation Trust has shown the power of genetic testing to pick out potential new treatments for children with cancer to extend and improve their lives. However, only 7% of children could access appropriate drugs, partly due to regulatory and funding barriers, and lack of access to clinical trials.
£500,000 for young cancer patients thanks to the ongoing Societe Generale UK and CLIC Sargent partnership
UK staff of Societe Generale Group, a leading European financial services company, are celebrating having exceeded a £500,000 fundraising milestone for CLIC Sargent, the UK’s leading cancer charity for children and young people, just sixteen months after the launch of the three-year partnership. The milestone includes matching from the Societe Generale UK Foundation.