Krystal

26 February 2015
Krystal - Never give up

Krystal was diagnosed at the age of 11 months with a rare childhood cancer called alveolar rhabdomyosarcoma.

Her mum, Rebecca, tells their story:

Krystal with lump on lip"It took nearly three months to reach a diagnosis. The GP initially treated her for an infection - when it first appeared above her lip it was a small red mark. We used creams and were given antibiotics, but it started spreading and getting bigger.

I asked for a referral to a specialist and we were sent to Alder Hey Children’s Hospital - this was after three long months of different antibiotics and creams and different doctors looking at her.

We went to the Ear, Nose and Throat Unit. As soon as the doctor had seen her he booked her for a biopsy. Within a week I was kissing my baby girl on the head after her anaesthetic. She was having a small piece of the lump removed for testing.
Krystal’s mum, Rebecca, asked that this photo be shown so that other parents and families can understand and notice the symptoms of rhabdomyosarcoma.

Diagnosis

So many questions race around your head - will she die? Will her hair fall out? How likely is it the chemo will work?A week later the results were in and we were taken to a small room. I’ll never forget that day. They said, "I’m sorry, but your daughter has cancer". I don’t remember much after that point - I just wanted to get out of there as soon as I could.

So many questions race around your head - will she die? Will her hair fall out? How likely is it the chemo will work?

Krystal’s central line was inserted six days later, with chemotherapy starting the following day. It was hard. I kept asking - why us? And why has my innocent daughter, who's not even turned one, got cancer?

But I had to stay strong for her. And Krystal, no matter what, was always smiling.

Intense treatment - chemo and radiotherapy

It was tough, but she was tougher.Krystal had intense chemo every three weeks for three days - six doses at once. It was tough, but she was tougher.

Her hair had fallen out after the first two weeks. In the first eight months we were only home for around of 12 days.

The hospital had become our second home. Krystal had many blood transfusions, platelet transfusions and antibiotics, but we got used to it. We made a lot of friends on the oncology ward. Friends that I know will always be there for us.

Krystal with nebuliserHer central line got infected a lot. It needed removing a few months in, and a new one put in the week after.

Krystal’s tumour on her upper lip had spread to her lymph nodes in her neck and we were told she also needed radiotherapy. She had this in the adult hospital at the Clatterbridge Cancer Centre.

It was for seven weeks, every day. She had a total of 28 sessions to her face and neck. It was harder than chemo. She had anaesthetic every day and had to fast every night at midnight. She had a breathing tube down her throat too.

The radiotherapy burned her skin off and she needed neck bandages every few hours with creams to ease the pain, and steroids to calm the swelling inside and out. She also had a nebuliser to ease her breathing. She couldn’t cry or talk - it was so painful.

Krystal still had her chemo in between the radiotherapy. You wouldn’t think they could do so much on a little baby. They definitely tested us both - but she was still smiling. Her strength was amazing.

MRI scan to check progress...

I cried happy tears that day.Three months later we had an MRI scan to see if the eight months of chemo and radiotherapy had worked.

You have to wait for the results for three days. Your mind is racing - what if it’s not worked? What if it’s growing again? I couldn’t bare for her to have to go through more intense chemo.

The results came back showing  just a small shadow on the scan with no active cancer growing.

I cried happy tears that day.

Maintenance therapy next

Krystal smilingKrystal started maintenance chemotherapy in October 2014, having been diagnosed in March 2014. This involves a small amount of chemo through her central line every week, and oral chemo every night.

Maintenance chemo will last a year, and finish in October 2015. I look forward to that time.

Krystal’s hair has been growing back since the harsh chemo is over. She still has to take her morphine and anti-sickness medicine and milk through her peg, but she's not in hospital as much. We just take every day home as a blessing.

She has to have ultrasounds on her neck and chest x-rays every two months just to make sure nothing starts to grow while she’s on maintenance chemo.

Rhabdomyosarcoma is an aggressive cancer

So we know how nasty this cancer is. We have nine months of treatment left - but taking one week at a time and trying to focus on the positives.Rhabdomyosarcoma cancers are very aggressive and evil.

Our friend’s little boy, Dylan, had the exact same cancer as Krystal - he was in remission, then relapsed and sadly was taken too soon on the 17th January 2014. He was a beautiful little boy - only four years old. His parents have been amazing at keeping his memory alive.

So we know how nasty this cancer is. We have nine months of treatment left - but taking one week at a time and trying to focus on the positives.

Having Krystal’s smile there every day pushes you forward to carry on. She's my hero.

KrystalYou can follow Krystal's journey on Faceboook: www.facebook.com/PrincessKrystal13 "
Rebecca Hartley, January 2015

Since writing this in January 2015, Rebecca has sent us this photo of Krystal. It was taken in April 2015.

How you can help

There are lots of ways that you can help children like Krystal in their fight against cancer.

From donating £5 to taking part in a run or organising your own event. Whatever you do or how much you raise, you really can make a difference to children living with cancer across the UK

Make a donation
Read more: Support us | Current rhabdomyosarcoma projects

Have you or a family member been affected by childhood cancer?

Many of our supporters have been affected by childhood cancer – either through family, friends or their own personal experience. These patient stories can help inspire others to get involved with us, or can support our media work.

If you have a story that you would like to tell, please contact us by email today.

Read more: Rhabdomyosarcoma | Commonly used terms in treatment | Side-effects of treatment

Return to Patient stories

PostCounter

Where your money goes

Hover over a segment for details

NCRI AMRC