The trustees of The Rob George Foundation never grow tired of hearing how the Foundation can really ‘make a difference … one individual at a time’ to young people across the UK. This is especially true of our Aim 1 grantees – To provide practical and/or financial support to young people with life threatening or terminal illnesses.
We invite you to read first hand Emma’s raw and honest experience of dealing with her daughter Ellie’s leukaemia diagnosis and the ongoing treatment she faces with such courage!
We send our heartfelt thanks to Emma & Ellie for bravely sharing this insightful and emotionally moving piece that culminates at just how the RGF has made a difference at a time when Ellie, Emma, and their family most needed it.
A Mum’s Story: Ella’s Journey
In 2023, on New Year’s Eve, we called the out-of-hours doctors because Ella’s neck had swollen, and she was slightly out of breath. We were told to call an ambulance immediately, but we felt this was a bit extreme, so instead, we took her to a very busy A&E.
We arrived at A&E at 11am on New Year’s Eve. After a long wait, they took Ella’s bloods and did an X-ray. By 2am on New Year’s Day, we were still there, and they still didn’t know what was wrong with her.
I managed to sneak through to a nurse and said we had been there 15 hours with no clear answers. She logged into Ella’s notes and, speaking to me as a mum herself, mentioned that it looked like Ella had leukaemia, but there was no bed available, as elderly patients had priority. She advised us to hold on a little longer. I was in shock and asked if someone could come out to explain this to us as a family. She promised someone would come soon, but after another two-hour wait, I chased her up, and eventually, a doctor came out to say that Ella’s drip was finished, and we could go home.
I was stunned. We had just been told Ella might have leukaemia, and now we were being told to go home. The doctor explained that they had to consider the worst-case scenario but would contact us in the next 48 hours.
The next 48 hours were a blur. We were confused and scared and just sat there, waiting for news. The day after New Year’s, we received a phone call asking us to come straight down to the ENT day care. We went in, and after some tests, the doctor said there was nothing wrong with Ella’s bloods, and he couldn’t understand why we had been told it might be leukaemia. He put a camera up Ella’s nose and said it was probably just an infection that would soon pass. We left the appointment feeling relieved.
But the next call came on Friday when our local doctor looked at Ella’s X-ray from New Year’s Eve. He said it looked like she had lymphoma, and he would be requesting a scan in the next 48 hours. My world fell apart again. I locked myself in a room at work and sobbed. I called the CT centre at the hospital, desperate for answers. The gentleman on the phone, who initially told me to wait, said that lots of people had cancer, and I’d still have to wait. I’ll never forget those words. However, after a pause, he realised how harsh they sounded, and he said we could come in for the scan that afternoon.
Monday came, and our doctor confirmed the suspicion. Ella had lymphoma. This was unreal. I couldn’t stay strong for her. We were sent for blood tests and told we would need to go to Leicester the next day, as they specialised in lymphoma. We were given a Macmillan card, and everything began to feel like a nightmare. I even called later in the day to ask if the doctor could have made a mistake. I was told that he never made mistakes and was very experienced. Our lives had just fallen apart for the fourth time that week.
By Wednesday, we were at Leicester Royal Infirmary. Dr Bhullar confirmed that Ella did have lymphoma but needed a biopsy to determine what type. As Ella’s breathing was worsening, he immediately started her on steroids and scheduled a biopsy to check a large mass in her chest that was pressing on vital organs.
Unfortunately, the first biopsy didn’t give the results they needed, so another was scheduled where they would go in deeper. This procedure was done under local anaesthetic and required an overnight stay – just the first of many. Ella was officially diagnosed with unfavourable classic Hodgkin’s lymphoma. The doctors reassured us that if you’re going to get cancer, this is the one you want, as it’s easier to treat. But for Ella, this wasn’t the case.
She began her treatment with two cycles of a strong chemo called BEACOPP. She was hospitalised for a week due to the severity of the side effects. The night she came out of the hospital, she was thrilled to take a shower, but as she towel-dried her hair, it all fell out. It was heartbreaking. We had expected it to fall out bit by bit, but it happened all at once. No one had explained this to us.
After Ella’s mid-way scan, things seemed to be looking better. The majority of the cancer had gone, leaving only a small amount. Because Ella was struggling with the treatment, and her scan looked positive, the doctors changed her chemo to a milder one. Unfortunately, this proved to be the wrong move. Her end-of-treatment scan showed that the lymphoma had grown again.
By then, Ella’s veins had collapsed, and for the last six rounds of chemo, it would take 13 attempts to insert a cannula, and the chemo burned as it went in. The decision was made to fit Ella with a PICC line, and she would have two rounds of GDP chemotherapy before proceeding with a stem cell transplant.
After the next PET scan showed that the GDP treatment had been ineffective, Ella switched to immunotherapy. After four rounds, there was still some activity lighting up on the scan, but doctors suspected it might be her thyroid gland. Ella needed to harvest her cells and have an ovary removed to give her a chance of having children, so they decided to add two more rounds of immunotherapy and another PET scan to bridge the gap before the next stage of chemotherapy.
Ella had her PET scan, and it was still lighting up slightly. Doctors explained that a patient must be in remission before having a stem cell transplant to give them the best chance of a cure. No one would say for sure that Ella was in remission, but they all agreed to move forward with the transplant. I had to trust them.
In early December, Ella had multiple appointments preparing for her hospital admission. On 18th December 2024, she was admitted to the teenage cancer ward, where she stayed until 8th January 2025. I was able to stay with her the entire time.
Ella was extremely ill and had not eaten for most of her stay. On Christmas Eve, she had a feeding tube inserted, and her stem cells were put back in. The feeding tube was the worst experience – painful and uncomfortable. After a week, Ella was being sick, and the tube had curled in her throat, making her choke. We pressed the emergency button, and the staff had to repeatedly adjust the tube. Eventually, they decided to remove it. Ella asked for food, which was a small victory after weeks of not eating.
Christmas Day was certainly different this year. We opened presents, and Ella’s dad and sister were able to visit. Ella didn’t miss Christmas dinner because she couldn’t eat. We are still waiting for Ella to feel better before we can properly celebrate Christmas together.
The next step for Ella is a 100-day scan, and we are praying for an all-clear. She still cannot eat much and has not regained the weight she lost, but she hasn’t lost any more either. The doctors warned that if she loses more weight, she will need another feeding tube.
During this journey, the Rob George Foundation has been a massive help. The RGF treated Ella to an iPad, which kept her entertained during long hospital stays. They also provided funding for clothing and travel expenses, relieving a huge financial burden. I never understood the “cost of cancer” until we went through this, and now I see how crucial this support is. Without it, the stress of financial worries would have been unbearable.
Thank you to the Rob George Foundation and all those who have supported us through this unimaginable journey. We’re still fighting, and we remain hopeful for Ella’s future.
If you’d like to help us continue making a difference for families like Emma and Ellie’s, please consider donating today and click on the link below. Every contribution, regardless of size, helps us support young people facing unimaginable challenges.