Amber Gooch-Boags

Amber, now aged 12, was diagnosed with inoperable parameningeal Embryonal Rhabdomyosarcoma when she was 7, in 2017. Amber’s treatment was led by Addenbrookes, UK and she received chemotherapy and proton therapy in Florida.
Amber’s cancer is currently stable and whilst she lives with the impact of her tumour and the side effects of her treatment, she is thriving.

Amber's Story...

In March 2017 Amber was at school enjoying a celebratory disco for completing the Year 2 reading challenge with her friends, when her teacher noticed something was happening to her face. She called another member of staff over and they both watched as the right side of Ambers face dropped and swelled before their eyes. The school rang us and we took Amber straight to the GP, the GP diagnosed Belle’s Palsy, he gave us some leaflets and said it would resolve on its own. I was terrified it was a brain tumour. We got home and realised that Amber’s right eye wouldn’t close and was getting very dry, the GP had closed by this time so we got some drops from Tesco. We went back to the GP the next day and told him that Amber had pain down the right side of her face and head and her eye was sore, he gave us some more eye lubricant and said that if we were worried over the weekend to take her to A&E. We took Amber to A&E on Sunday, the paediatric consultant did a neurological exam and said it wasn’t a tumour, he confirmed belle’s palsy and sent her home with 7 days of the steroid prednisone.

Over the next couple of days Amber’s pain was getting worse but we were told it was simply deferred pain from the facial nerve and her personality changes were side effects from the steroids.  We went back to the doctors again the next week and saw a different GP, he seemed far more concerned than the previous GP/Consultant. We asked him to keep an eye on her and he agreed she needed to be seen weekly to assess any improvement in her face and monitor her other symptoms.  Amber began to wake in the night sobbing with earaches and headaches. She had begun to retreat into her self, and suffered nightmares. She didn’t want to see friends and began to fall off the horse she rode at the weekend, every car journey caused a bad headache, our bright star was fading before our eyes. We went back to the GP, he made an urgent referral to the hospital and an appointment came through for mid May. On the 2nd May Amber woke up and couldn’t walk in a straight line, we immediately went to the GP who sent Amber straight to the hospital.

Amber finally had an MRI, which identified a mass in her skull, on one of the images it looked like a mushroom pushing her brain up. It had wrapped around her carotid artery, extended along the eustacian tube (damaged her facial nerve) and perforated her ear drum. The radiologist queried rhabdomyosarcoma or PNET, and referred her to Addenbrookes. The pain Amber had been experiencing had been due to the tumour pushing up her brain and extending out across the base of her skull. Our lives crashed around us, but at least we had answers, the pain was written across her face, over the next 12 hours her symptoms progressed and Amber began to vomit uncontrollably.

Amber was blue lighted to Addenbrookes the next day and suddenly every door seemed to open. Amber was admitted and it was a race to identify what the mass was, bone marrow samples, bone scans, many more MRI’s, CT’s and ultrasounds. Amber was bed bound and had a neuro check every 2 hours day and night. She was given anti sickness to control the vomiting and morphine for the pain, she was terrified to get up because of how sick it made her, so we would lift her legs and arms while she was in bed and dance and sing to Trolls and Moana. She was so happy and content as long as she had us with her, but most importantly her three favourite dumbo teddies.

Amber’s tumour was inoperable but it had perforated her ear drum so the biopsy was relatively easy, the surgeon was incredible and after the biopsy Amber managed to walk without being sick because they had manage to remove the bit that was affecting her ear. Two weeks after the first MRI we were given a diagnosis of Embryonal Rhabdomyosarcoma. Amber had her hickman line fitted and started chemo the next day. After each chemo, Amber ended up in hospital with fevers when she went neutropenic, and the weight simply fell off her and every day was a battle to try and get her to eat.

Amber endured 9 cycles of chemotherapy administered every 3 weeks over 27 weeks, at week 15 we flew to Florida for Amber to have proton therapy, which at that time was unavailable in the UK. Addenbrookes co-ordinated all of Amber’s treatment. It was wonderful in Florida, they started her on Gabapentin which really helped the symmetry of her face, she still couldn’t use the right side but the severity was no longer as obvious.

The chemo caused neuropathy and the strength in Amber’s hands reduced to 45%, she began to trip and fall over her own feet and tip toe walk another sign of the neuropathy. Amber had physiotherapy and occupational therapy to help strengthen her hands, her feet were cast to try and increase the dorsiflexion. The gabapentin also helped her neuropathy.

Although we were adding eye ointment every 2 hours Amber had developed an ocular ulcer because she wasn’t producing natural tears. Somehow Amber found happiness in every moment. She went to school in between chemo admissions, fevers and blood transfusions and managed to perform a dance with her friends for her schools talent show. There was barely a dry eye in the house after they performed.

Amber’s strength, courage and determination inspired so many people, her friends acceptance of her condition was incredible. Our lives had crashed around us but our family, friends and community were there and it was awe-inspiring.

Amber finished treatment in 2017 and her tumour was stable, she is now approaching 5 years post diagnosis and never ceases to amaze us. Amber has long term effects and damage from the tumour including permanent facial palsy, right sided deafness, no ear drum and neuropathy in her feet, but her incredible attitude and work ethic has helped her overcome every obstacle in her way.

We are some of the lucky ones, I just wish all children were as lucky.

What was your journey with cancer like?

I have never felt more terrified, desperate and lonely than when Amber was diagnosed. Yet at the same time inspired and awed by the incredible little 7 year old before me. Fear stalked every second and guilt began to lay heavy in our hearts as we watched helplessly as more families lost their children, an understanding that luck still has the hugest part to play in survival.
Someone asked me what Amber’s prognosis was – that question gets asked a lot more than you would think (and some people even asked it in front of Amber). I remember saying to this person that it was about 60-70% depending on what literature you read, they said “oh that’s good then”.  I nearly fell over and treated them to a lecture – yes those are great stats if you want a 1st or a 2:1 in your degree, but for children, if every child in a class of 30 was given those survival stats it would mean between 9 and 12 children would die out of that class of 30. Needless to say they didn’t think those figures were so great when put into the context of lives. 
The truth is we got our strength from Amber and her little brother. Amber had an amazing way of understanding and coping with her cancer, and Finlay the need to be with his sister playing games. She had been growing her hair all her short life, but it didn’t grow quickly and so when we sat her down and explained that the naughty lump in her head which had caused her face not to work properly, had to be treated with medicine that would cause her hair to fall out we all sat and cried. Amber was sad for only a couple of minutes before turning to her daddy and I, and telling us that is was OK because our dogs Angel and Bailey moulted their hair and she would moult hers, she never mentioned her hair again and we collected most of it up and laid it outside so the birds could use it in their nests just like we did with the dogs fur.
Amber had no concept of self pity, it didn’t occur to her, her focus was going to school, and our focus was helping her do exactly that when she was well enough. Amber was amazing, her knowledge, understanding and calmness amazed even the play specialists. As parents we watched her and her brother play, our hearts breaking while we plastered smiles on our faces to try and shield them from how we were truly feeling. Despite this, she always knew when we had been crying – I would come back from a chat with the consultant and she would look at me roll her eyes and say mum have you been crying AGAIN!!!

What changes would you like to see for children diagnosed in the future?

GP’s need to be more aware of childhood cancer and less focused on it’s perceived rarity. I want to see increased utilisation of accurate diagnostic tools such as MRI’s etc. Some children go months and months without a diagnosis but persistent pain should be investigated robustly sooner. I also want to see any child with Belle’s Palsy symptoms scanned as a priority to rule out cancer.


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Our Mission

We have already raised £3,500,000 and now aim to reach £5,000,000 to pay for research to find a cure and better treatments for rhabdomyosarcoma.
Raised £3,500,000