Story
In February 2019 our beautiful nutty little 2 year old Sophie (who calls herself Sophie Chops) was taken ill by the common H1N1 Flu. Soph was shaking continuously, had freezing cold hands and feet but an extremely high temperature and just wanted to sleep constantly. We took Soph to the GP who sent us straight to A&E as she had developed septicemia. Soph was hospitalised for 7 days in isolation, where they worked extremely hard to control her temperatures, treating her with IV antibiotics and anti virals, until eventually her immune system won and she began to get better. At the time of her septicemia, Sophie was Neutropenic (extrememly low neutrophils, or low immune function to you and me), St. Helier did a blood test at the time to identify why, and if the Leukemia was there, it was undetectable. After being discharged we were all, especially Sophie, extremely traumatised but hugely grateful she had come out the other side. We thought that would be the most frightening thing to ever happen to one of our children.
2 months later Sophie still wasn't quite right, she wasn't sleeping well (this wasn't unusual for her), she was tired, quite moany, had night sweats and didn't want to play. Anyone who knows Soph knows she does not sit still and is crazy, constantly climbing or running or just being goofy. At the time we thought she was still traumatised and still recovering physically from the septicemia. Then one week before her diagnosis Sophie could not lift her left arm and every time she tried she cried in pain, we naturally thought she had simply fallen and hurt herself, we now know painful joints is just one symptom of Leukemia. The day before the worst day of our lives, we took Sophie to her playball class she couldn't run and began to limp, she was also hanging her left arm by her side. I thought it was the new trainers I had literally purchased the day before, but I did ring my sister Gemma to ask how to do a stroke test. Soph did perk up after playball and went out for dinner with her best friend (she sounds more sociable than we are). She ate well so i definitely put it all down to the new trainers. That night Sophie slept with me (Sam was working away) and she had a terrible temperature. When we woke in the morning she was sick and in her sick were tiny specks of blood. I panicked, I rang my sister as being 38 weeks pregnant I emotionally could not cope with the idea of her being septic again. Gem told me to call 111 since the GP was not open yet. Sophie had tiny purple pinpricks on her arms, legs and face (meningitis panic sets in) and around her ankles where her new trainers sat were deep, black, painful looking bruises. 111 sent and ambulance immediately. Gem met me at A&E and while there Soph had a nosebleed that did not stop for at least 10 minutes until finally a huge clot passed out of her nose and they gave her something to stop the bleeding, at this point they ordered further tests on her bloods. The consultant came shortly after and asked when my husband would be arriving, I said 20 minutes so he said he would wait. Once Sam arrived they took us into a private waiting room, while Gem sat with Soph who was continuously sleeping again, and told us Sophie had the definite symptoms of Leukemia and that we would be admitted to isolation in Epsom until their partner hospital "The Royal Marsden" would organise transport to bring her there. There are many moments through our experience that have been hard to cope with but the fear we felt that day will live with us forever. You hear the words cancer and immediately think death sentence.
Once we were transported to the Marsden she had her first bone marrow aspiration and was diagnosed with Acute Lymphoblastic Leukemia and her treatment began straight away. They can't stage Leukemia since it is a cancer of the blood it is immediately systemic, in almost every organ. The first 8 weeks were an emotional roller coaster, continuous stays in hospitals, regular blood transfusions, steroids, fluids and of course her multiple different chemotherapy treatments. By the end of her induction phase Sophie was considered cancer free and in remission, our first milestone and first celebration. Once in remission you cannot stop chemotherapy treatment since there are likely to be hidden Leukemic cells in her bone marrow and once they start replicating relapse occurs. As a result Sophie is in the middle of her grueling 2.5 year treatment of continued chemotherapy and steroids to try and ensure she stays in remission. Her end of treatment date is predicted to be the end of June 2021, after this she receives 6 weekly check ups for a further 5 years and at the end of that 5 years providing no relapse she gets to ring the infamous Marsden Bell, a day we are all looking forward to.
Since beginning her treatment Sophie has endured 3 bone marrow aspirations, 14 general anesthesias, 14 Lumbar punctures injecting chemo into her spinal fluid, 13 blood transfusions, 48 days of IV antibiotics, 69 days of oral steroids, 94 needle pokes, 24 days of IV chemotherapy, 6 intramuscular chemotherapy injections, 284 days of oral chemotherapy and its likely I've missed a few. She's lost all her hair, eyebrows and eyelashes twice, experienced complete loss of appetite and extreme hunger, lost the ability to walk for a month, has a traumatic fear of plasters and developed an extreme stutter due to the emotional trauma of it all. Yet if you met her today, other than the short hair, you would never know she had been unwell and through an ordeal no 2-3 year old should ever have to. Her resilience and bravery is just unbelievable.
In honour of her we, along with friends and family, are raising money by cycling 100km for The Royal Marsden hospital, a world-leading cancer centre, who saved Sophie's life and are continuing to do so to ensure she grows up to be a healthy happy girl. They truly are a brilliant hospital, with caring nurses and Drs, who strive to develop new research and treatments to ensure the best outcomes for every child and their family.
We would be grateful for any donation no matter how big or small so this amazing hospital can continue to save lives.