ELLIE’S THANK YOU
Firstly I would like to thank the Crier Committee who kindly donated £100 towards Ellie’s Charity Football Match. This was arranged for Ellie at Falkirk Football Stadium and raised nearly £5000. The money will be divided between Strathcarron Hospice, TCCL (Tayside Children with Cancer and Leukaemia) and CCLASP (Children with Cancer and Leukaemia Advice and Support for Parents). These are local charities who have supported us. Ellie also raised £4600 for The Little Princess Trust to help other children get real hair wigs and also nearly £4000 was raised by eleven family members and friends for Cancer Research - Race for Life.
Ellie was diagnosed with stage 3 Hodkin Lymphoma in October 2018, after numerous doctors’ appointments. We were told they thought Ellie had glandular fever. After an intensive course of antibiotics, ultrasound and x-rays we were told to wait a month to see if the antibiotics worked. Exactly one month later Ellie got another ultrasound on her neck and I knew there was something wrong. The doctor wouldn’t commit to anything until he had compared it to previous scans. He said they would be in touch.
The next day the dreaded call came from an oncologist in Ninewells to say that Ellie had Lymphoma and Ellie would need to go as soon as possible to Edinburgh’s Sick Kids Hospital for an MRI scan. The MRI confirmed Stage 3 Hodgkin Lymphoma, which was in her neck, chest and spleen. She had to have a portacath fitted under her skin just above her chest with a small tube in her neck. That is where they access for all bloods, chemo and medication to go in. She also was given a biopsy of the largest lymph node in her neck. That determines what tpe of lymphoma she had.
She was officially diagnosed on the 12th of October 2018,we were devastated. Everything happened so fast, it was full on. She had to have four cycles of chemo; each cycle was for 28 days. We had a lot to learn. Ellie’s chemo started on Monday 5th November, we had to stay so Ellie could b monitored. She had loads of medication to take over and above her chemo, at one point she had 30 pills a day to take. We had to take her temperature constantly as the chemo had killed her immunity. She lost her beautiful red hair within three weeksof treatment.We were heartbroken, thathad to be one of the hardest times. By Christams Ellie wasn’t her usual self, for anyone who knows Ellie, she ran everywhere, but she was really ill. She sat staring into space and was very vacant. The doctors at Sick Kids were were really concerned for her as she could hardly walk either, they sent her for an emergency MRI to check that the chemo wasn’t affecting her brain. The chemo is made up of four drugs and the steroids were damaging her bones badly. She was in so much pain , she ended up in High Dependency with collapsed lungs. The MRI showed she had a fractured spine, hips and pelvis all of which was caused by the steroids and the muscles and nerves in her legs were damaged by one of her drugs, Vincristine, she had to walk on her tiptoes as the muscles had shrunk so much. She lost the sensation in her hands, feet and legs. The vincristine had done so much damage they changed it to another drug. Ellie was whirlwind, full of energy and it was so hard to see her like this. I had to help her with everything and she has ended up using a wheelchair.
When chemo finished she got 11 sessions of radiotherapy and had to have plaster casts on both her legs for six weeks. Her walking is so much better. She still has a wee bit to go but as I write this she has the casts on again and hopefully this time will get her feet flat. She still has medication to take but is getting back to her old self. Unfortunately Ellie was very sensitive to the treatment and it affected her more than normal. She took everything that was thrown at her. Through this whole process the biggest challenge for Ellie was losing her hair. She told her consultant she couldn’t lose her hair and her words will stick with me forever “Ellie if you don’t have treatment you will die.” It was horrendous that any child should be told that.
She is through the worst hopefully but has to have bone infusions for two years to help with the fractures. Her hair is growing in and is a completely different colour - it’s blonde! She is hoping to get back to school in a phased return as she hasn’t been since October last year. We are so proud of her and the fight she has put up. She still has a wee bit to go but she’s getting there. She is now in remission and will have monthly MRI scans. The best news you could ever imagine.
I was asked to put something in the Crier and it gives us the perfect opportunity to thank each and every one of you, who sent cards, gifts and flowers. Also to the Crier, Church, Open Doors, Masonic Lodge, Bowling Club and Binn Group who have given gifts, flowers and donations, Michelle at Clootie McToot for keeping Ellie’s job available. We have a fantastic NHS and the Consultants, Nurses and all staff at Edinburgh Sick Kids are truly amazing.
Billy, Danielle, Megan Ellie and I can’t thank you all enough for your love and support.
Be grateful for every second of every day that you get to spend with people that you love. Life is very precious.