Update: 10 years cancer free
There was once a time when celebrating 1 year cancer free seemed so far out of reach. Never mind celebrating 10 years in July 2018. I can’t put into words the fight Emma put up or the daily battles she faces due to damage both the treatment and cancer has caused, but one thing cancer won’t do is dull her beautiful smile or knock her down.
It all started when Emma turned one. Emma developed a cough, the doctors said it was normal as she had started teething. The cough never seemed to go away but the doctors said it was a just a cold or a viral infection. I took her to see another doctor who used to be her paediatrician.
He was sure it was not a nose cold, a teething problem or a viral infection. He put her on antibiotics and inhalers as he thought it might have been asthma, but doctors do not diagnose asthma in young babies.
Emma also had chest X-rays but these came back all clear. When Emma was coughing, she would cough so hard she was always sick. This would happen every night sometimes up to four times a night. Emma would go off her food and just seemed to sleep throughout the day. Emma missed out on a lot of things because of her illness.
It wasn’t a viral infection
All of a sudden, Emma started being ill again but only this time she went off food all together. She had bad diarrhoea, a high temperature and was always being sick. All the time the doctors told us Emma had a viral infection. All in all, I think we took Emma to see a GP about 40 times and our local A&E about 15 times.
Emma also had really bad stomach pains. These pains were coming and going for about three to four weeks. Two weeks later, I took Emma back to the doctors with the same thing, only this time the pains were worse. I cried to the doctor but he told me to behave as there is nothing wrong with her and that I just have a sick baby who gets infections easily.
On 12 November 2006, we took Emma back into hospital because Emma was still having these pains. We saw a different doctor in A&E and he found a lump in Emma’s belly. Our lives changed forever.
Tumour found on the kidney
We were told that Emma would need an ultrasound scan on her lump in the morning but they told us not to worry as it feels like the liver is a bit big. We needed to stay in hospital that night and in the morning we went for an ultrasound scan and that’s where it was confirmed Emma had a lump. We were transferred to a children’s hospital by ambulance.
Emma had a drip as her intake of fluids was so low. At midnight, the doctor took one look at Emma and put her straight on morphine infusion. Finally my little angel had a better night’s sleep. Emma had a CT scan the next morning. We were told that they had found a tumour on her right kidney and they thought it was one of two types, either a Wilms tumour or neuroblastoma.
I didn’t have a clue what either of these were. Just because someone has a tumour it doesn’t mean it’s cancer. Then the doctor told me that one form of treatment would be chemotherapy. So right there and then I knew what she was telling me: “My little girl has cancer”. I was all by myself and just been told the worst news any parent could be told. That night was a blur. I just remember going to phone my mum to tell her the news.
20% chance of surviving
On the following day, we were told Emma would be having a ‘central line’ fitted, as it would be easier to access, for bloods. We were also told Emma would have a biopsy on the tumour and two tests on the bone marrow known as aspirate and trephine. These were all scheduled for the morning.
At night I would cry myself to sleep and relied on Stephen to tell me everything that was going on and to reassure me it would be okay. We were told Emma had neuroblastoma stage 4 N-MYC Positive. “What the hell is all this?” I asked myself.
She told us that it was on Emma’s right kidney and they were unsure whether it was pushing against or it had grown into the kidney. They also told us it had spread to Emma’s bone marrow and her bones. Emma needed a metaiodobenzylguanidine (MIBG) scan to see how far it had spread in the bones. We were then taken onto the ward so further tests could begin, straight after being told the worst news ever. We had no time to rest; our little girl was really ill and needed treatment ASAP.
If Emma did not have treatment now, she would only be with us for the next few weeks. Emma needed a blood transfusion. This shocked us but it became a common thing. Emma needed eight rounds of chemotherapy over a period of 80 days, with each round being just over 10 days.
This stage of chemotherapy was called rapid COJEC; it was high doses of chemotherapy. She also needed stem cell harvesting (very high doses of chemotherapy 24 hours a day for five days) to wipe out any cancer in her body but it would also kill off her bone marrow. Once Emma had undergone all this, she would have to take maintenance chemotherapy for nine months.
All this was mindblowing. That evening the doctor told us Emma only had a 20% chance of surviving. We used this as a positive; we had a chance!
Responding well to chemotherapy
Emma responded well to all the chemotherapy she was given and the tumour shrunk by more than half its size in just four rounds; her bones and bone marrow were all clear, which was amazing. She had her operation on time, as Stephen and I read that some children with neuroblastoma need a few more rounds of chemotherapy before the operation.
Emma eventually had her surgery, which went well. The entire tumour was out. Transplant was the hardest time of our lives. Emma got three infections all in one day. She had two line infections, a gut infection and a lung infection. Emma started to gain weight and was showing signs of the liver shutting down.
She was having X-rays every day on her chest and she also had an ultrasound scan which showed a shadow by her liver. We were told more devastating news that they had found a tumour on her lung. They were unsure whether it was relapse or maybe part of the primary tumour that had been missed. So once again our poor little girl was going under the knife.
We were told we were very lucky to get away with that operation and with positive results. The tumour came back 99% dead and under 1% was mature neuroblastoma. Emma did her nine months of maintenance chemotherapy and was told not every child can finish this part of treatment as it cracks the skin, dries it out and it almost looks like they have been burnt. Yet again Emma was amazing, she took all 22 tablets a day.
Healthy 12 year old
Emma is now a happy healthy 12-year old and is in reaching distance of her 13th birthday. Emma is a keen artist who spends a lot of time drawing, painting and she has also taken up photography. Being a typical teenager she’s a keen gamer.
We have recently just celebrated Emma being nine years cancer free, which is a massive milestone for any child battling neuroblastoma. Emma is now in high school and it’s one of the most surreal things to think about. There was once a time we didn’t think she would start nursery and now she’s in Year 8.
Emma has high pitch frequency hearing loss and somehow she’s adapted herself to manage in a hearing world. At school Emma has great support and has a statement in place so she has access to certain help if she needs it. She works hard and is hitting all her targets in a mainstream school. Sadly several months ago we found out Emma has more side effects, this time around her teeth.
During a dental X-ray of her mouth, they noticed Emma was missing certain adult teeth and still had a lot of baby teeth. She is due to have two baby teeth removed and the adult teeth pulled down followed by a brace. Once the brace has been fitted, the rest of her baby teeth will be removed and possibly implants fitted. Due to the chemotherapy that she received, Emma’s adult teeth didn’t grow. Emma still has a lot of other hospital trips due to other side effects.
Thanks to so many charities
More recently Emma started suffering with anxiety, but doesn’t let this hold her back. She’s a fun, loving and caring little girl. Emma doesn’t allow anything to set her back, she doesn’t moan and she never feels sorry for herself. She gets through everything with a smile.
Thanks to so many charities including Children with Cancer UK, we have been lucky enough to make some amazing memories over the last 10 years. The help we receive from charities makes a massive difference to families. It gives us something positive to look forward to. Especially now that Emma has a little brother, he’s starting to understand more about her cancer and being involved in days out keeps them both positive about cancer.
The last 10 years haven’t been easy, but I would do it all again to get where we are now. We still have bad days and scary days but we also have a lot of good days with lots and lots of laughs. I hope sharing Emma’s story can give other families hope. I felt bitter and angry for a long time, which got worse every time Emma had a new side effect or disability. I started to grieve for that ‘normal’ childhood my daughter wouldn’t have, but Emma knew no different, she smiled and just got on with it.
We weren’t prepared for life after treatment, but slowly things started to fit into place. We accepted and adjusted to a new life. Children with Cancer UK do amazing work funding research into finding new drugs and treatments for children with cancer. I can only hope that one day their researchers find a treatment that doesn’t leave these beautiful and brave children with so many side effects and disabilities.
Nine years cancer free
Emma is nine years cancer free, I can’t believe how quickly it has gone. In these last five years Emma has had three scares. Now Emma just has regular check-ups and has CT scans to check the liver. These last nine years have been truly amazing, watching Emma grow into a lovely young girl, though these years haven’t been easy for Emma.
She has severe profound high pitch frequency hearing loss in both ears, she has vision and focus problems with both eyes, she has learning disabilities and gets a lot of help at school with a teaching assistant, speech and language therapy and a teacher for the deaf.
She suffers with aches and pains in her legs and back, the doctors believe this is because the cancer was in these parts of the body and the chemotherapy did damage to the bones, so she still uses her wheelchair when needed. Over the years she has seen so many different doctors and departments, from child physiologist, physiotherapy, audiology, oncology, respiratory clinic, ophthalmology, eye clinic, to name just a few.
But despite all her side-effects, she is a happy healthy 12 year old little girl; she has a lot of friends in school and out of school. She tries extra hard with school and with the help of everyone, Emma does keep up.
Update June 2019
A little update on Emma, she’s still attending side effect clinics, mainly dental and audiology and is now being referred to physiotherapy due to leg and back pain. She tries to be active but the more she’s active the more pain she’s in, so it’s a bit of a nasty cycle that Emma’s stuck in. In better news, Emma is still attending mainstream high school and she’s been placed in set one for English, her biggest achievement yet. This is such a massive deal for us as a family and proves how hard Emma has worked considering she’s deaf. Emma has learned to talk over the years through reading and is now learning sarcasm, and a new range of humour, these are little things we take for granted, because we can hear, I never thought for one moment that Emma’s disability would affect her humour, emotions and feelings.
This update is a little different, I’d love to say we’ve been spending our time creating beautiful memories and smiling all the time but that would be misleading. I want families out there to know, there are survivors and to focus on the positives. Emma is a very polite young lady, she’s loving, caring, funny and she’s got a lovely group of friends. Charities like Children with Cancer UK are so important, particularly the days out they provide, which give something for Emma to look forward to. Emma has led an extraordinary life, and has done more than most adults, it just goes to show there is a life after cancer.
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