Kelsey's Story

My daughter Kelsey was 24 and had been unwell for a while, she was feeling tired all the time, sleeping a lot, she wasn’t eating and was really unsteady on her feet. She had been to see the doctor numerous times, they first thought she had tonsillitis, after a course of antibiotics there was no change, so they thought she had some sort of virus.

On 27th September 2024, I was talking to her and she flopped down. I went to her and could she her face was contorted. I knew straight away that she was having a fit.

At the hospital she was taken into triage and given antibiotics and she was sent back to the waiting room and had another fit.

The doctors came out and took her straight into a room. She started having seizures every 5 to 10 minutes from then on. Two of the seizures were big, she locked out, stopped breathing and had to be resuscitated.

After 14 hours of not being able to stop the seizures, they sedated her and gave her a ct scan. They weren’t expecting to find anything but we were taken straight to the family room and told she had a mass on her brain.

They took her back down for another ct scan and sent the results to southmead hospital. The neurosurgeon said to intubate her and get her over to him and he would operate straight away.

He operated as soon as she got there to put a drain in, the mass was the size of a golf ball and was stopping the fluid in the brain from draining.

After spending a week in ICU recovering, she then had to have another surgery, they had to drill through the top of the skull, guided a tiny telescope through the brain, down to the base of the brain.

The results were devestating, she had cancer. Medulloblastoma.

They found It was widespread, there were parts in her brain, in addition to the main tumour and it was also all the way down her spine.

it was agreed for her to have a third surgery a week after the last one, to remove the main, golf ball size tumour.

The neurosurgeons name was Mr Malcolm and he fast became my favourite person, my daughter is still alive because of him.

After spending over a month in hospital, she was allowed home to recover and for her scars to heal. Once fully healed, she started chemotherapy and radiotherapy. She didn’t react well to the treatments and ended up spending a lot of time in the hospital. They had to stop the chemo after three weeks as she was so unwell and she got neuropathy in her toes, which was really painful for her and she couldn’t walk. She did manage to finish the full 6 weeks of radiotherapy though.

Kelsey was heartbroken when she lost her hair, and her sickness throughout the treatment was terrible, she had to have a syringe driver put in as she couldn’t keep any food down and when she was allowed home, the district nurses came daily to replenish it.

She was supposed to have a further 6 months of chemo, but she had such a bad reaction to the chemo she had at the start, that the oncologist advised us, that in her opinion, it would shorten her life by having it, rather than prolonging it. It was a tough decision but we all agreed to stop the treatment.

Kelsey has additional needs but she understood enough to know that she was really ill, she had had enough at that point and said she didn’t want anymore.

We slowly weaned her off all of the medications she was on, and about 6 months after treatment finished, she was able to stop the anti sickness meds and have the syringe driver taken out.

We had to wait 3 months after treatment finishing for an mri scan, the results were better than we were expecting. The scans looked good, there were a couple of areas of concern. They couldn’t guarantee that there were no tumours, but things were looking more positive.

Since then, kelsey has been having physio and can walk a little, she uses a walking stick and wheel chair but she can get around the house now.

She isn’t out of the woods yet but she’s still here fighting, She’s stayed positive throughout. Even on the days she didn’t want to she’s tried her best to smile her way through.

We are so grateful to the Ben Saunders foundation for the offer of a break. It really does mean so much to families like ours.
Kelsey is so excited to be getting away with me, her brother and sister and her sisters boyfriend.

I myself had breast cancer two years before Kelsey’s diagnosis, so all the kids have had a lot to deal with over the past 3 years. Thank you so much for giving our family some much needed family time together 🥰

Kelsey’s sisters boyfriend is doing the three peaks challenge in September, he will be raising money for the Ben Saunders foundation. He wanted to give to a charity close to his heart, and one that had directly helped Kelsey. It’s not much but he wanted to try and give something back and to say thank you on behalf of us all