Sophie's story

From extensive research we have learned that Sophie stands an amazing 80% chance of survival with a treatment called 3F8 immunotherapy. This ideally should be given after Sophie finishes her high dose chemotherapy (around October/November 2009). UNFORTUNATELY this treatment is not available in the UK or Europe. The only place in the world it is given is a Hospital called the Memorial Sloan Kettering in New York. Not only that, but the price for this specific treatment can cost up to $800,000. Of course we do not have this kind of money. This is one of the main reasons I have this appeal going. To raise as much money as we can in the dream that Sophie can receive this treatment.

With Neuroblastoma Sophie's doctor told me "first treatment is the best chance they get", this treatment prevents relapse as well as targeting and killing any microscopic neuroblastoma cells that cannot be detected with all the tests they do currently. Please help Sophie get the best chance to survive this deadly disease.

May 2009 - present

Sophie has now finished her 8 rounds of intensive chemotherapy. She has just finished all the tests they have to receive in order to go ahead with surgery. She had a CT scan, bone marrow biopsy, MIBG scan and VMA urine test. Her bone marrow remains clear of cancer, her urine and MIBG scan are negative and her CT scan shows huge shrinkage of the tumour. We have just seen the Surgical team with regards Sophie’s operation to try to remove as much of the tumour as possible. They informed us that typical neuroblastoma tends to be on one side of the adrenal gland so if they need to take a kidney out to achieve total removal then they can. Sophie's neuroblastoma is midline meaning it involves both adrenal glands so they probably can't remove it all. This, for every parent, is devastating news. I wished they would be able to remove it all. Sophie's operation is going ahead on Monday 15 June 2009. Let’s pray everything goes well.

February 2009

My family and I had planned a trip abroad to visit my husband’s relatives beginning of February 2009. The 2 weeks leading up to the holiday I noticed that Sophie started to refuse food. Now this was very unusual for Sophie as Sophie loved her food and always had something to eat in her hand all the time. I also noticed her tummy looked quite big but as Sophie was always a chubby baby I thought it was normal. She started to cry when I changed her nappy and generally her mood changed. Sophie is normally a cheeky, funny energetic little girl who is always exploring things. Sophie started to lean towards one side when I carried her and seemed in pain. I took her to the emergency walk in clinic, as it was the weekend and the local doctors was closed, and explained her symptoms. The doctor examined her and told me it was a viral infection and that it would clear up on its own. I also mentioned her large tummy only to be told it’s quite normal for babies to have big tummies. I wasn't convinced. The next morning I took Sophie to her GPs only to be told again it was viral. The next morning I was drying Sophie after a bath and a felt a hard lump on the right side of her tummy. I was very scared. I have previously worked in Hospitals for over 11 years and worked in the Northern Centre for Cancer Treatment so new all about lumps and bumps. That day I took her again to the GPs who could not get a good examination as Sophie was screaming in pain when the doctor touched her tummy. She referred us to the Paediatric Department at our local hospital. I sat in a chair for 7 hours waiting for a doctor to come and examine Sophie whilst Sophie screamed and rolled around the floor in pain. Once the Paediatrician came I explained all her symptoms and the lump I had felt. She carried out an x-ray of Sophie's tummy and I sat around waiting for the result. Whilst waiting another doctor came in and explained the previous doctor had finished her shift and she would be taking over. She told me the previous doctor was happy to discharge Sophie as there was nothing on the x-ray and she could not feel any mass but the new doctor wanted to re-examine Sophie to make sure. Thank god as she could feel the lump and immediately took bloods from Sophie. I was told at 2 am that night that Sophie's blood results came back and her tumour markers were over 4000 indicating she had a very large mass in her tummy. They explained they suspected it could be neuroblastoma and said Sophie would be referred to the Oncologists first thing in the morning. Our holiday was cancelled.

The next morning we were transferred to the Paediatric Oncology Team at the Royal Victoria Infirmary in Newcastle upon Tyne. I can't describe how I felt at this point. I think I was numb with shock. They told me they would carry out various tests to find out what is was, where it was, and what they were going to do. This all happened pretty fast. Sophie had blood tests, each time screaming with pain as the doctors inserted cannulas into her tiny hands. They did an x-ray, ultrasound scan, CT scan, VMA urine test and MIBG scan (similar to a bone scan). We were informed that Sophie's mass was huge, and was pushing her major organs to one side and had invaded her lymph nodes extensively. They had arranged for Sophie to have a biopsy of the tumour and bone marrow aspirations as well as insertion of a central line for chemotherapy. At this point I asked the doctor why she needed chemotherapy, could they not try to operate, and was told to my horror it was far too big to operate. My poor little girl had to undergo all this and she was only 15 months old. I was shell-shocked.

Results of the tests came back very fast and my heart was broken. Sophie had Neuroblastoma, a huge malignant aggressive tumour arising from the adrenal gland near the kidney. It had spread to the distant lymph nodes and her bone marrow. My little girl had stage 4 cancer, not only that but with this cancer survival chances were as low as 20% and recurrence of disease so high. I met the specialist doctor for neuroblastoma who was very nice and very informative. She explained the treatment Sophie would have for "high risk" neuroblastoma. I couldn't believe the treatment involved. Sophie would have 70 days worth of intensive chemotherapy given up to 3 days a week every 10 days to try and shrink the tumour and clear the bone marrow. They would then collect her stem cells, before undergoing surgery to try to remove the primary tumour. This would then be followed by high dose chemotherapy aimed to wipe the whole immune system, then stem cell rescue. Along with this she would have 14 days of radiotherapy being under general anaesthetic each day. The last part of the treatment would be an oral chemotherapy (accutane) given as an outpatient for 6 months. In total the treatment would last 1 year.

Sophie commenced chemotherapy 2 days later. Throughout this chemotherapy Sophie has amazed us all with her strength and determination to be a normal little girl. She was only poorly for the first round of chemotherapy. The only side effect Sophie has had during chemotherapy is losing her appetite which resulted in her having a NG tube put through her nose and into her stomach so she can be fed by a machine every night. She has not had temperatures or illness throughout and a lot of the time we were able to go home between treatments, which was great, so she could spend time with her big sister, Jessica (3 years old). After 4 rounds of chemotherapy an ultrasound showed the primary tumour had shrunk considerably and her bone marrow was clear.