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Family Stories – Rebecca Henderson

Rebecca was diagnosed with the rare soft tissue cancer Alveolar Rhabdomyosarcoma in February 2014. 3 weeks after her 8^th birthday her thigh had become swollen

At first her parents thought it may be sports injury as Rebecca did a lot of swimming and gymnastics. However her leg worsened over the day, becoming more swollen and difficult to move leg.

Rebecca’s Dad took her to see the GP and she was immediately sent to North Tees hospital over concerns about a possible blood clot. They didn’t seem too concerned at first however an ultrasound scan found a clot and tumour behind her knee.

From there things escalated quickly and Rebecca was sent to the RVI by blue light ambulance that same night. Her mum Tracy said: “We were oblivious about what was happening really. Within a week they’d done all of the scans and a biopsy to confirm the diagnosis. I had been googling so had started to wonder but my husband Paul fainted because he hadn’t suspected anything.”

Rebecca stayed in hospital for a month at first, she needed daily injections to bust the blood clot and then she had a Hickman line fitted and started chemotherapy

“Lots of families can take a long time for diagnosis, we were very lucky because I hate to think would have happened with her clot if it had been left. She had six tumours, the main one in her calf and then some in her knee, hip bone and bottom of her spine. It is a painless cancer with very few symptoms until her leg swelled so quickly.”

Since her initial diagnosis and treatment Rebecca has relapsed three times: 2017, 2019 and July 2020. Each time treatment has been successful, a combination of chemotherapy, radiotherapy and surgery. She is now on her fourth course of treatment.

Alveolar Rhabdomyosarcoma is a very rare form of cancer, with only around 60 cases per year in the UK. Therefore, once Rebecca relapsed, there was no protocol in place for treatment and the family needed to find a suitable research trial to provide a treatment option. “Each time Quentin [Rebecca’s consultant oncologist] has been amazing and found her something.”

The most recent relapse was a particularly anxious time for the family. “She had only just had surgery in March 2020 and was about to get her freedom back, but national lockdown hit. Hospital did everything by phone call which meant we didn’t have to risk going anywhere but she got shingles in May 2020 and her leg started to swell. Rebecca just knew it was back again.”

The impact of COVID

Rebecca’s mum told us “We’d been reading the news and knew research trials were being closed and we knew some of the specialist nurses had been moved out to help with COVID. It felt very scary, we knew it was difficult anyway because she had relapsed so many times but then with COVID on top. We’ve been very lucky that Great North Children’s Hospital have been so cutting edge with their trials and treatments. I feel we get the latest options, but this time I was really worried that everything would stop. Quentin was amazing and gave Rebecca the option of a trial treatment, it may not be curative for her but it will help other children in the future. She was really brave and said she wanted to do it.”

The trial that Rebecca is currently on has so far proven to be successful in that 2 of the 3 tumours have reduced in size and it is keeping her well for now. However, one of the very difficult side effects is low mood and negative thoughts and this may be the last cycle that she can tolerate before potentially having to switch to other drugs with fewer side effect. “The benefit for Rebecca is they have far less side effects and therefore she will have a better quality of life. She has been so isolated and lonely. She at least can see friends in the garden now.”

Rebecca and her family feel that the clinical trials, part funded by Children’s Cancer North, have been crucial to her.

“The trials are what have kept Rebecca with us, they have saved her life three times. If it hadn’t been for those trials she would not be with us.

We feel so grateful that we’ve been able to access it within our country, being able to come home and sleep in her own bed is so important. It would be very scary to have to do this away from home. Great North Children’s Hospital is one of two places in the UK where the trial she is on is available. They do it so well at GNCH, they really care. The empathy they show towards the parents as well as the children is amazing.”

Leading edge clinical trials

Rebecca has taken part in eight research trials since her diagnosis, twice being the first person on the children’s wards to receive the drugs on trial. She was one of the first children to test anti-sickness drugs that are now used all over the world as the gold standard in anti-sickness treatment for children. The second trial she took part in is also now standard relapse treatment for certain cancers. “She is really proud that she took part in those trials. It was scary at the time but now she knows other children don’t have to feel scared because there is a proven treatment. These are life and death decisions that Rebecca has had to make.”

Tracy – Rebecca’s mum describes a life that has changed fundamentally since Rebecca was diagnosed with cancer.

“At some points you feel like a nurse. Administering anti sickness drugs, giving injections, weekly flushing of lines; it’s a lot to learn, especially at the beginning when you’re still dealing with the fact that they are so ill and trying to make sense of it. We have been fantastically supported by the ward though, I can’t praise them enough.”

Life as a family has had to change

Tracy has had to give up some of her responsibilities at work, having previously been part of a senior leadership team at a school, and now works part-time. She finds it a challenge to balance time for each of her children, also having a 12 year old son, Jake. Jake was only 5 when his sister was diagnosed with cancer and has grown up knowing no different, “The child who has cancer needs so much time and attention, often experiencing anxiety. Siblings often get pushed to one side or passed around other family members. I find it tricky sometimes to get the right balance.”

The staff at the children’s cancer unit have been a huge support for Rebecca and her family.

“They really try to work with us and help us adapt, helping with access to medicines or getting bloods done at home or flushing lines at home. Little things that make a big difference to helping you have a bit more normality and spend time together as a family. You feel like single parents sometimes, especially during COVID. During COVID once a parent goes in, you stay in, you can’t swap over. It’s very tiring, exhausting on the ward. Up all night dealing with sickness and diarrhoea.”

The play specialists and some of the activities and gifts funded by Children’s Cancer North have made a huge difference to Rebecca’s quality of life while on the wards.

“The amount of time they fill with those craft activities is amazing. They are crucial. Little boosts like the end of treatment and birthday gifts make a difference and help them get through it. Tom the animator, it’s a vital part of trying to make it feel like they have a childhood. They miss being a child and all of that helps them to do it. Helps them to feel normal.”

Here are some thoughts from Rebecca about some of the activities funded by Children’s Cancer North:

“When I was younger, I spent a lot of time as an inpatient in the cancer ward. The play nurses would come every day to bring me craft activities to do which was good as it would have been very boring without them. Now I’m older I can be sat in the cancer day unit for over 8 hours attached to a machine having blood and platelet transfusions, but the staff always check whether I need anything to keep me entertained.

Treatment can make you feel very lethargic and not want to do anything. Tom the animator always gets me out of that mood as he is funny and he teaches me new skills using technology.

There are lots of special occasions which happen on the ward such as celebrating end of treatments or birthdays, and the ward staff give out presents. I’m always surprised when I receive a gift and it cheers me up.

The Christmas parties are great as there is always lots of different things to do. I like seeing my friends from the ward as we can enjoy ourselves without feeling self-conscious about having no hair. It’s also lovely to see the staff and children have fun together as the staff dress in superhero costumes. I think this makes it less scary when the nurses and doctors have to do procedures to you on the ward.

I’m glad I get to do research trials as it makes me feel like I am making a difference.

Trying different chemotherapy drugs means that the doctors can work out the best way to treat not just me but also other children with my type of cancer.

Sometimes the side-effects of chemotherapy are horrible so I like the trials which are trying to make kinder treatments or better anti-sickness drugs.”

Your basket

Family Stories – Rebecca Henderson

The impact of COVID

Leading edge clinical trials

Life as a family has had to change

Here are some thoughts from Rebecca about some of the activities funded by Children’s Cancer North:

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