In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
The diagnosis of a brain tumour is devastating for the patient, their family and friends.
For these people life will never be the same again.
These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.
We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
You are forever in our hearts.
Over the following weeks and months, Abigail underwent a series of tests, including a comprehensive examination of her eyes, but all came back clear, even the eye test, which can be a key method for indicating the presence of certain types of brain tumours.
Finally, an MRI scan was booked for 18th February 2011, but not long before this was to happen, Abigail collapsed and was taken to Bolton Royal Hospital. Doctors performed various manual dexterity tests on Abigail which all came up as normal and as the scan was booked for a few days later they decided to wait. It was only then, at the age of nine, that she was finally diagnosed with a medulloblastoma brain tumour, around 20 weeks after we first had taken her to the GP about her vomiting.
Abigail then underwent a craniotomy with the surgeons taking out 95% of the tumour, leaving the remaining 5% sitting too close to the brain stem to risk removal at that time.
She then was given four weeks of cranial radiotherapy and two weeks of cranio-spinal radiotherapy because the doctors were not sure whether or not the cancer had spread to her spine.
Abigail then endured the Packer regime of chemotherapy (three weeks on drugs and three weeks off) for a period of 48 weeks.
Her surgical team talked about Abigail having another operation to try and remove the last 5%, but what was left could have been scar tissue, so it was felt that the risks outweighed the potential benefits.
We were worried that Abigail would be self-conscious about losing her hair, but it didn’t seem to faze her at all. In fact, she was quite excited about what colour her wig might be. In the event she never ended up wearing one, but she would often wear a hat to keep out the cold.
It was astonishing how positive Abigail remained throughout her ordeal. I am sure that if she hadn’t been the way she was Bernie and I would have been a pair of wrecks.
By the time Abigail was nearing the end of her time at Heathfield Primary School, she had very little balance and could only walk more than a very few steps with the aid of a walker. She also had difficulties with coordination as well as weakness on her right side. Amazingly, however, Abigail’s education didn’t seem to have suffered and she was due to transfer to secondary school in September 2012.
Despite all the treatment, a scan in August revealed that the cancer had returned. Just a few short weeks before Abigail was due to start at Ladybridge High School in Bolton, we were given the devastating news that there was nothing more that doctors could offer.
In total, Abigail managed to attend her new secondary school for eight days over a period of six or seven weeks, but then had to stop completely because she was too poorly.
Abigail passed away in Derian House Children’s Hospice on 10th November, 2012 with her family by her side.
We are so proud of our daughter. People don’t understand how inspiring and courageous Abigail was. It was a terrible shock to learn that Abigail had a brain tumour and then devastating to learn that there was so little that could be done. We discovered that brain tumours are the biggest cancer killers of children and the under 40s, yet less than 1% of national cancer research spending goes on brain tumours. This is such an injustice to the thousands of families each year who learn that a loved one has a brain tumour.
Even before we lost Abigail, I had already determined to do my bit to make a difference and had started making plans to walk part of the Great Wall of China. Eleven work colleagues at Kingsland Wines & Spirits in Irlam, where I am Warehouse and Distribution Manager, decided to join me to raise funds for Brain Tumour Research. Our nine-day trek in April 2013 – along 50km of the most remote and derelict parts of the wall – raised £40,000, which will help continue the fantastic work that goes on at the charity’s Centres of Excellence.
Gary Lightbown – October 2013