Caroline's rhabdomyosarcoma story

The start of Caroline’s rhabdomyosarcoma story

A cancer diagnosis is a life-changing event for all families. Caroline had been unwell for six months but we never considered it was cancer. She’d lost her appetite, complaining occasionally of earache. She developed a lump under her left ear but the pain was never enough to call the doctor.

In January 2017, the GP diagnosed a swollen gland, and prescribed antibiotics for an ear infection. After four further visits, a pencil-like lump developed on Caroline’s tongue, I exploded on February 27. Caroline had suffered a weekend of agony.

During a 12-minute conversation persuading the GP to see Caroline, the doctor asked about my concerns. I nearly screamed “A brain tumour or leukaemia” but Caroline was close so I waffled about mumps, glandular fever and trigeminal neuralgia. Caroline’s lips had developed pins and needles that morning. Finally, she had blood tests. Looking back I knew it was cancer from the moment we entered the hospital. Nothing has been the same since.

No parent should have to hear that their child has cancer

After triage the Paediatric Director examined Caroline and I’ll never forget the moment he said: “That’s not a lump on her tongue, its muscle wastage”. It meant nothing, but his face stated the real news. We are blessed that he was on duty then.

It transpired that something was pressing on Caroline’s tongue nerves. They did an ultrasound and my husband brought sleepwear. We were bewildered and emotionally exhausted. Next day we were transferred to Paediatric Oncology at the incredible Great North Children’s Hospital at Newcastle’s RVI for an MRI. Caroline had a soft palate biopsy under general anaesthetic. There aren’t words to describe those days. Caroline’s fighting spirit was apparent from the start though; on discharge she danced in her pyjamas, dosed on morphine pain relief.

Her voice diminished rapidly until she could barely be understood. Five days later we met the consultant oncologist, who delivered the devastating news that she had parameningeal rhabdomyosarcoma and was our rock throughout her treatment. I kept saying ‘It’s ok’. The consultant said: “None of this is OK. No parent should have to hear that their child has cancer.” This was 6 March.

We didn’t leave the hospital for 19 days. The tumour was inoperable due to its location. Caroline underwent CT, heart, kidney and lung scans, bone marrow, lumbar punctures and blood tests by the dozen it seemed. She had to have a general anaesthetic to insert the central Hickman line for delivering drugs and taking blood, plus insertion of a nasogastric tube (swiftly removed at Caroline’s request. She had no intention of needing a feeding tube!)

10 weeks of proton beam radiotherapy in America

Nine months of treatment began on 8 March with two days of drugs every 21 days, a weekly interim dose for the first six weeks. Chemotherapy and its appalling sickness floored Caroline, worsened by the morphine and anti-sickness steroids. Drugs upon drugs upon drugs caused a massive shock to her system. It was unbearable; heart-breaking to witness her suffering and unspeakable to watch the chemotherapy ‘poison’ pumped into her.

Hair loss was a psychological trauma for Caroline. We cut a plait for her to keep and she stopped brushing her hair on learning it would fall out. She slowly came to terms with her baldness despite worries that the hair might re-grow a different colour or curly.

In May we left friends and family for 10 weeks of proton beam radiotherapy in America – deeply stressful. Caroline endured a daily dose of radiotherapy wearing a full face mask, for 31 consecutive days. These were some of the darkest times of our lives whilst the good days felt like a wonderful holiday, a truly bizarre experience. We returned to the UK for three final chemotherapy rounds. Treatment officially ended on 25 August 2017.

Caroline is in remission

A tense wait for the post-treatment MRI results revealed on 18 October 2017, that Caroline was in remission. The news was stunning; too much to take in. Caroline was withdrawn until we got home when she suddenly grabbed me for a rolling-around hug yelling: “Yeah!!!!” repeatedly before going onto the trampoline and literally jumping for joy for about 10 minutes. There were many, many tears. The rhabdomyosarcoma cancer has left Caroline with various side effects which may increase over time including possible infertility and a paralysed vocal cord. Incredibly, the remaining cord has compensated.

Caroline can’t shout but her diction is virtually normal, as is her hearing which was initially affected. Speech therapy will avoid complete voice loss and hormones are monitored around puberty. It’s believed she has neurofibromatosis, predisposing her to future lumps. Three monthly MRI and chest X-rays check for spread while annual neurological tests monitor cognitive damage from the radiation.

End of Treatment Bells are placed in hospitals for children and adults with cancer to ring after their gruelling treatment.

Caroline is alive and that is all that matters

Treatment also slows bone growth so by her teens Caroline’s face will be asymmetrical for which reconstruction may be needed. Her teeth are checked three monthly for growth and blood supply which radiation affects. A radiotherapy report will determine the exact target areas and any other side effects e.g. eye damage. Caroline’s central line was recently removed and she can’t wait to swim again. Her hair is growing back thick, fast, silky and as straight and dark as before which she loves.

The future is unknown, there may be problems but Caroline is alive and that is all that matters. Caroline hopes to help other cancer kids by writing her journey through the eyes of her teddy, who accompanied her every step of the way.

Read her story here:

Otto The Bear Caroline’s Rainbow Kids of the Wild

Caroline’s rhabdomyosarcoma story update

Update: April 2019

Caroline has had a fabulous few months. She’s at school three days a week and loving it, including a whole day’s beach school each week. She’s become a Sixer at Cubs after attending two camps last summer, one an international jamboree. She’s also learning ukelele, dancing and pony riding each fortnight and has built up swimming distance since her line was removed to several hundred metres. She has set up a gardening club with friends in our new garden and is doing a three mile run in May to raise money for children’s cancer research. Health wise she is still very tired (from treatment as well as the underlying Neurofibromatosis that the doctors believe she has). Her speech is virtually normal though the left vocal cord is still paralysed and will probably remain so. She gets nerve pains on and off from one of the chemo drugs (Vincristine) as well as the Neurofibromatosis. Everything else is being closely monitored and all MRI scans are currently clear. She loves her new hair too.

Caroline’s rhabdomyosarcoma story update

Update: March 2022

It’s incredible to be writing this update almost five years to the day since Caroline’s cancer diagnosis. Five years seemed an impossible timescale to consider back then, an anniversary we didn’t know if she’d even be around for.

March 2017 was the terrible month she received her first dose of chemotherapy and here we are in 2022 with a truly healthy and happy child. I can honestly say she is alive and kicking. She still has all the regular hospital, dental, hormone, growth, hearing, sight and genetic checks but, God willing, this summer should see her having her final MRI and chest x-ray which will mean she is in five years remission and will no longer require the regular scans. We can’t wait for that date and we’re planning a big party next year to celebrate. Caroline re-started horse riding after lockdown and is constantly pestering for her own pony (fingers crossed for a lottery win) and she is still into all her crazy outdoor adventures, her cats, Scouts, theatre and reading as well as becoming a mini Minecraft expert and doing lots of art and craft. Her hair is long.

Caroline the fundraiser

In October 2021, Caroline took part in a 100’ abseil down a castle wall, inspiring us all to take part and fundraise for our local cancer charity. She probably gets a little more tired than most of her peers but other than that you wouldn’t know she has ever had cancer. Caroline still takes a daily dose of growth hormone via injection each evening. The initial pen she was prescribed was needle-free – a bit like the medication hypo sprays used in Star Trek. – as she couldn’t face any more needles after treatment. Last year however that pen was removed from use for safety reasons and she had to select a different one with an actual needle. Not a happy bunny; another stumble along the road to recovery but, being Caroline, she is totally used to it now and very stoic on the occasions it hurts her. Eventually she will inject herself but currently she still wants me to administer it each day.

Caroline now has nearly 600 beads on her Beads of Courage string and she is still proud of every single one. We seem to have reached the stage where it is harder as the parent of a child who had cancer than it is for Caroline herself. I still struggle emotionally with grief for her lost years and the childhood innocence that cancer took from her, as well as some minor PTSD now and again. Where Caroline can’t remember much of her treatment, us parents will never forget it.

We are so proud of Caroline and inspired by her achievements since diagnosis, there aren’t the words to express it.
Lucy, Caroline’s mum, March 2022

Update: November 2023 

Interestingly Caroline was really reticent to celebrate the final MRI scan (and in the end has needed a couple more in the last year for shoulder problems and pain which, while possibly related to treatment, are nothing to worry about cancer-wise). So we respected her wishes and haven’t had the big celebration I was looking forward to. I suspect the celebrations mean more to us parents than the children. For her it seems to be just a part of her life that’s over and done with. Amazing resilience really. Next year will be 7 years in remission so we’ll see how she feels about a party then!

Caroline is now having just an annual review with the oncologist. Initially that was a very daunting gap in the  ‘safety net’ of hospital visits though it’s great not having to travel there so often. There are still 3-monthly dental checks, 6-monthly endocrine checks plus sight, hearing, NF and cognitive checks annually or as necessary. And if that’s not a safety net what is?! The continued medical care and monitoring is phenomenal. 

Caroline now does her daily hormone injection herself, like an absolute pro. We set a daily alarm to remove the drugs from the fridge for half an hour before use and Caroline takes care of it all. She started menstruating last year, which is a great sign as it’s one of the hormonal things that might have been affected by radiotherapy. The next milestone will be fertility as that has a high probability of being affected, but she currently doesn’t want children so maybe it won’t be an issue anyway! Now she has entered puberty she could choose to stop the injections, but the benefits on bone density and other things in later life mean she has currently chosen to keep on the hormones until her mid to late twenties, though that can be assessed in future too. It’s one of the few cancer-related things she has control over.

A massive milestone this year was Caroline deciding to cut her hair short. Other than trimming, she hasn’t had it cut since it grew back after treatment. She was supremely confident about the style (a kind of wolf cut..) while myself and the hairdresser were extremely nervous she wouldn’t like the change. Fortunately she LOVES it. She donated her hair to a children’s wig charity.

She’s loving life at the moment! We had a big blip on starting secondary school which has resulted in home educating again. (Interestingly,  it was a cancer-related cognitive assessment including IQ test which showed Caroline to be extremely bright, possibly explaining why school wasn’t working for her). She now has a hugely varied academic input from many different sources including online and at home, and being driven up to 300 miles some weeks, to various courses, workshops and social events. The life of Riley!

Art and creativity still feature hugely in her hobbies, with a design technology tutor as well as dozens of personal knitting, sewing, drawing and crafting projects that Caroline does at home. 

She’s about to move up to senior Scouts, completes her Bronze Duke of Edinburgh award in the new year and went on an international scout jamboree to Germany in July. (Fortunately the German scouts had a ‘luxury’ camp including, unbelievably, a generator-powered fridge where Caroline’s medication could be stored!)

We had a fantastic family holiday in France with friends this summer. The kids enjoyed their first foam party(!), electric scooters, a ropes course, white water rafting, paddle boarding, swimming and time without parents! We did an epic hike to a glacier lake where we all swam in the icy water. Caroliney also achieved a lifetime dream of riding a horse in the sea – so deep she was soaked to her thighs. 

We are beyond blessed that cancer did not take away her adventurous spirit and she continues to live life to the fullest. Long may it continue. 

Lucy, Caroline’s Mum, November 2023