Sophie’s Story
Sophie during chemo
Donna had a feeling there was something seriously wrong with her daughter, Sophie, but it took several visits to the doctor before she was finally diagnosed with neuroblastoma at the age of six months. Now aged four, Sophie is doing well and looking forward to starting school in September. Donna shares her story here…
Sophie was our third child. She was born in September 2019 and initially, she ate well, she slept well, there was nothing untoward in her development. But by January 2020, I started noticing changes in her. She was waking more at night and wasn’t taking her bottle quite as well.
By February and March, she had gotten worse. She would wake up at night screaming and was barely taking more than a few ounces from her bottle each day. By this time, she had learned to sit by herself, but I noticed she would cry while sitting up and would lean forward in a strange way. She also seemed to have a weakness in her legs. Whereas before, if I held her hands, she would stand on my feet; now, her legs were buckling. She also had frequent colds and intermittent temperatures. But I put these down to normal childhood issues. They did not worry me as much as the night waking and the poor feeding.
Sophie during chemo
I took her to the doctor several times and was repeatedly told there was nothing wrong. By March, I was convinced there was something going on and took her to A&E because she just wasn’t feeding. The medical team there tried to get her to take more milk and she was sick all over the doctor, so we were admitted and Sophie underwent various tests. It was thought she might have an intestinal disorder so we were sent for an ultrasound, but this also showed nothing. She had a feeding tube put down her throat, but I noticed that every time she was fed through it, she started screaming, so it had to be removed and we were sent home.
“We Googled her symptoms and neuroblastoma popped up as a possible diagnosis. My husband and I had never heard of it, but my instinct told me that there was definitely something wrong.”
On Easter Sunday, I woke up to find that Sophie had a lump coming out of her back. Despite the fact that we were in Covid lockdown, I decided to take her to A&E. The doctor there tested the reflexes in her legs and I could see that she wasn’t responding as she should. She had an X-ray too. Sophie was still smiling and seemed happy, but my gut feeling was that there was something wrong. The doctor felt that she was probably OK, but suggested she have a scan. However, as it was Easter weekend, there was no radiologist around to do it.
I called during the week to arrange the scan and was told it had been cancelled. I was furious. I threatened to take Sophie to A&E and not leave until she was seen! Luckily, my persistence worked and at 11:30 on the morning of 16th April, she was finally seen by a paediatric radiographer. I could tell immediately that he had found something, as I could see him taking down various measurements and when he suggested we should be admitted for further tests, I asked him outright if Sophie had cancer.
He told me that he suspected she could have neuroblastoma. It was a shock to hear this, but not altogether a surprise given my previous Googling of her symptoms. We were taken up to the ward and despite it being Covid, my husband Graham was allowed to join us. We were soon blue-lighted to another hospital where at 10pm that night, we had Sophie’s neuroblastoma diagnosis confirmed.
Sophie and her ‘beads of courage’
An MRI scan revealed she had tumours in her tummy, back and also going up her spine. We were warned there was a risk she could face permanent paralysis. The following day, Sophie underwent surgery to biopsy the tumours and have a Hickman line fitted. Then chemo started immediately.
Sophie was initially in hospital for about 10 or 11 days. Graham and I had to alternate our visits, as thanks to Covid restrictions, we could not both be there together. She was moved to a hospital nearer home and spent the next five months in and out of hospital.
She underwent six rounds of chemotherapy in total, four of medium grade and two high-dose treatments. While Sophie was having chemo my husband and our older two children Mia and Oliver could not come in and be with Sophie or visit. I did all the trips to the hospital for chemo and when she had to go back in in-between for blood transfusions. Graham stayed at home with our other two children, this is something we decided from the beginning. We were very grateful that we could FaceTime so they could still see Sophie when she wasn't there.
By the end of it, scans showed that the tumours had gone, although she will always have scar tissue present as a reminder of where they were. By the time she turned one, she was in remission.
Sophie’s last day of chemo
“Sophie is now four-and-a-half and is thankfully doing well. ”
She is at nursery and looking forward to starting school in September and doing dance lessons with her big sister. She was initially having monitoring scans every three months, then it went to every six months, and now she just has an annual check-up and MRI scan. Next September, she will be five years clear of her cancer.
She still has some health issues as a result of what she has been through. She has foot drop in her left foot which means she needs to wear a splint to stop her from falling over, especially when she is not wearing her shoes. And she may require a tendon replacement when she is older. But we are so grateful that she is able to lead an otherwise normal lifee.
Sophie in 2024
“Of course, it is always scary to think that her neuroblastoma could return. But we are positive about the future. We are lucky that her cancer was caught early and we know that the longer she remains in remission, the better.”
It has been an incredibly traumatic experience for the whole family and at times, it was a very lonely journey because Covid kept us apart from our family and friends. We were advised to be as honest as possible with our older two children, who were eight and six at the time of Sophie’s diagnosis, and we did this through special books, teddies and a pack given to us by the hospital.
The road to Sophie’s diagnosis was frustrating, but I cannot fault the medical teams who looked after her once she was diagnosed. They acted so quickly and we can not thank them enough for everything they did for her.
Sophie was a surprise baby for us and we know that she is an incredibly special little girl who is definitely meant to be here! It has been a hard time for all of us, but it is wonderful to see her doing so well. The whole experience has brought us closer as a family, but we know that we have been lucky and that not everyone has such a positive outcome.
Thank you to Donna for sharing Sophie’s story
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