On 11th February 2011 our beautiful little girl Emma, 3 yrs old, was diagnosed with high risk neuroblastoma, an aggressive childhood cancer which affects children under the age of 5 yrs.
Emma has always been a happy and content child, full of love and laughter. Following Christmas 2010, I could see her begin to change, over the next few weeks she became tearful for no apparent reason, the laughter became less frequent. She began asking me to pick her up, and would become hysterical if I refused. When I did pick her up, she became calm, pacified until the next time… This was not like Emma, I knew something was wrong.
I took Emma to the GP, wondering if she had become depressed, could children even become depressed? Our doctor took blood tests, the results showed she was anaemic. He referred her to a paediatrician but the appointments were some time away. Over the past 6 weeks her personality had completely changed. I knew something was wrong, seriously wrong. I couldn’t wait any longer and so one evening I took her to Casualty. We were seen by a consultant there, he admitted Emma overnight and the following morning she had an Ultrasound scan. This scan showed a growth in Emma’s tummy. The consultant described it as a ‘mass’, I queried this – surely he didn’t mean a tumour, my baby had cancer. Sometimes the worst news is delivered with the softest blow. He replied ‘it’s a nasty mass’. I will never forget that moment for the rest of my life.
I could only think one thing, I was going to lose her. I would have to sit here and watch her die. We went to Manchester Royal Childrens Hospital the following morning, and it was here the diagnosis was confirmed. She had an aggressive childhood cancer.
The first week is a blur of blood tests, scans, minor operations while the hospital conducted bone marrow tests, inserted a line, and then took a biopsy of the tumour in her tummy. This was when things got even worse, during the biopsy she started bleeding into the tumour, her stomach swelled, and as the tumour was pushed up into her chest she began to struggle for breath. My husband and I could only sit and watch, our hearts were breaking. I was sure she would never make it to chemotherapy. She was put onto oxygen and made to sit upright, she remained like this for the next 3 weeks. She was very seriously ill.
More tests followed. The whole time I was screaming out inside for chemotherapy to begin, aware the cancer could be spreading through her little body. Every day was agony. Eventually she began chemo. She had it every 10 days, and each time it left her very poorly, sick and exhausted. It wasn’t until the conclusion of the third cycle that she was finally taken off the oxygen, she started to breathe unaided. We were ecstatic, this meant the tumour was shrinking, the chemo was working. We could actually see her tummy beginning to go down.
Emma once asked why our eyes were always watering? We were convinced she was never going to make it…It was then I realized we had to be strong, she had fought so hard, but more battles lay ahead, we had to stop the tears falling when we were with Emma.
After her last cycle of chemotherapy Emma went into renal failure, her kidneys had been damaged by the chemotherapy, her body was retaining 4 litres of fluid, which put pressure onto her veins. Her blood pressure soared. In the middle of the night she woke up having a seizure. She began to have further seizures, a brain scan showed 3 tiny bleeds caused by low platelets and the seizures. The next day the doctors transferred Emma to the High Dependency Unit, she remained there for 16 days, She was put onto dialysis, and had to go back into theatre for more lines to be inserted. She has become so swollen and unrecognizable. Following dialysis she looked like a different child… she looked so tiny. Once again she was very poorly, all our initial fears of losing her returned.
Emma had 4 sessions of haemofiltration. She is now on a fluid restriction (too much fluid and she will blow up again, she can only have 1200mls a day, this includes medicines and flushes, it also includes soup and yoghurt so drinks have to be limited. She must follow a low potassium diet which and can no longer have her favourite tomato soup or pizza, or any processed food.
Emma turned 4 yrs old on April 18th. Whilst on HDU she asked me “mum is this the dying room”. l was shocked. She was looking at me waiting for an answer.. I said “no, this is where people come to get better”. There was a little baby nearby under a blue light, I explained the light was making the baby better. My baby was lying there with lines protruding from all over her tiny body, lines for dialysis, lines for blood, lines for fluids, lines for platelets…
Next came the operation to remove the tumor, this lasted 6 1/2 hours. About 5 days later the lab confirmed the tumour, which measured 18cm x 6cm at start of treatment, had been removed from her tummy. She had been home only a matter of days before she began to get sick again, having more seizures and blood pressure soaring once again. She was given a very strong drug to bring the blood pressure down but this sent her into a fit which needed medical intervention to bring her out of it. Once again, we found ourselves back in HDU until the blood pressure and seizures were brought under control.
Next came high dose therapy with stem cell rescue, which would take 6 weeks. This was an awful time, convulated by the medical complications and kidney damage she had already suffered. During these weeks she caught a severe infection – muccositis, requiring double strength morphine to ease the pain. The next step is radiotherapy which is due to start on the tenth of October.
High Risk neuroblastoma remains a major cause of death due to malignancy. The majority of high-risk neuroblastoma patients will experience disease relapse. Once relapse occurs, there are NO curative options in the UK.
Children with advanced-stage disease have a significantly decreased chance for cure despite intensive therapy. This is despite the fact that many patients reach the end of treatment with no disease detectable. It is assumed the reason for relapse is that microscopic residual disease is still present at the end of conventional treatment.
At Childrens Hospital of Philadelphia, an antibody therapy (immunology) has been developed to specifically target the microscopic disease that causes relapse. Ch14.18 together with IL-2 and GM-CSF and showed a significant improvement in the survival of children treated with the three drugs.
Emma has fought a ferocious battle, and has come through it despite the odds. More amazingly, Emma is still laughing and making people laugh. The CH14:18 with IL-2 and GM-CSF is her very best chance to prevent recurrence of the cancer.
We desperately want to give her this chance at life. The treatment comes at huge cost. We need to raise in the excess of £ 210,000. Please help us.