Abigail's Mum, Ellie, has shared her daughters inspirational story of strength and determination.
In June 2018, 12 months prior to Abigail’s diagnosis, I took Abigail to see her GP because she was having a lot of pain in her legs. Sometimes the pain would make her cry. The GP dismissed it as growing pains and waved us out of the room.
Abigail’s sister, Annabel had some special insoles fitted and they had helped her. So, we thought that insoles might help with Abigail’s pain. We saw a podiatrist and Abigail had insoles fitted and they did help for a while.
Abigail started to get really upset at the beginning of May and she cried to her teacher, which was most unlike her, as she was generally a well child and didn’t easily complain or get upset. So, we knew something really wasn’t right. I tried to get a GP appointment, but I was told it wasn’t an emergency and would have to wait till the end of the week.
I turned to fellow paediatric nurses for support. They suggested going to A&E and she had an X-ray and was diagnosed with an irritable hip and sent home. Abigail cried all night with tremendous pain, we gave her pain relief, but it did not ease the pain.
The A&E department we took Abigail to do a second review of X-rays and her X-ray was re-looked at and we received a call from a consultant radiologist who said we needed to come to the hospital immediately.
I worked at the hospital as a nurse and my matron came down to A&E, which I found unusual and she looked after Abigail whilst we spoke to the radiologist. He took my husband and I into a side room and told us he had seen something on the X-ray. At that time, we were told it was either a lesion or bone cancer and I said ‘osteosarcoma’ and he nodded. Abigail’s diagnosis then took 6 weeks which was a very difficult time. The first biopsy only got necrotic tissue (dead cells), so she had to have a second one. Both biopsies were done at the Royal Orthopaedic Hospital in Birmingham.
Abigail was diagnosed with metastatic Ewing sarcoma in her right pelvis, the tumour was approximately 7-10cms and it had metastasised under her clavicle (Collar bone) to her left supraclavicular node but it was too dangerous to take a biopsy.
Abigail had 14 rounds of 5 different types of chemotherapy at the Royal Manchester Children’s Hospital (RMCH). On the 18/06/2019 Abigail was formally diagnosed with Ewing sarcoma and chemotherapy started on the same day. Abigail’s oncologist Dr Anthony Penn and the RMCH team were fantastic.
Abigail had 58 sessions of radiotherapy at The Christie in Manchester. The team at The Christie were amazing. Due to receiving chemotherapy and radiotherapy at the same time, Abigail was very poorly. She was so poorly and spent most of the summer in hospital.
Abigail had major surgery which was carried out at the Royal National Orthopaedic Hospital, Stanmore, London in November 2019. The surgery involved removing the right side of her pelvis. In order to get discharged Abigail had to learn to walk again using mobility aids with the help of Stanmore’s physiotherapy team.
Abigail’s treatment finished on the 1st of March 2020.
Because of the Covid-19 pandemic and lockdown, Abigail went straight from treatment into shielding. Since lockdown she has not been able to have physiotherapy or hydrotherapy at the hospital which is essential to help her rehabilitate from the surgery to her pelvis. Abigail loves dancing and lockdown has stopped her.
Abigail is still using a wheelchair some of the time. Prior to her diagnosis she was very sporty, and she is still an amazing swimmer. Her ambition has always been to become a vet.
Abigail has been really upset about the Covid-19 pandemic because she was looking forward to normality and getting her life back and the virus has stopped that. If she had one wish it would be there was no virus. She was desperate to get back to school.
Her little sister, Annabel has supported Abigail and all the family throughout. Coming home from very difficult days and getting cuddles from Annabel was an incredible feeling.
We have set up a Special Fund with the Bone Cancer Research Trust called Abigail’s Ambition to help find kinder treatments. Abigail would very much like to get rid of Doxorubicin as she really struggled with it. It was this chemotherapy that made her the most poorly.
Awareness is so important. If caught earlier it may not have spread to her neck and she may not have lost as much of her pelvis. As it stands, she could also still end up with secondary cancer from the treatment she has received with it being so aggressive. Physically, it could have had a completely different impact, there are lots of physical activities Abigail is unable to do and is now classed as disabled. However, she is so determined, and she tries to not let this her stop her, she is always looking forward.
If Abigail only had the primary tumour, she would have been eligible for proton radiation rather than photon. This would have been much more precise, and a smaller area would have been affected. We know she has probably lost one ovary and there will be further damage from the radiotherapy including her thyroid.
As a family we wish we had known about the Bone Cancer Research Trust especially when we were going through diagnosis, as it was such a stressful time. It would have made a difference to be able to call them. We are very grateful for the support we have received since we reached out to them.