Read Maisie's leukaemia story | Children with Cancer UK

When Maisie grows up video

We asked Maisie what she wanted to be when she grew up…

“ When I was a child, I wanted to be an Olympic Swimmer! But as an adult I graduated from Kings College London in July 2020, and started work as a Doctor this Summer.”

“As I got onto my older teen years, the doctors wanted to see me on my own without my parents because they wanted me to absorb the information and retain it rather than rely on my parents to remember it. It was at that time when I was learning about the different medications and different treatments that I got a real interest into science.”

Maisie joins us for Childhood Cancer Awareness Month to reflect on her treatment and what she wanted to be when she grew up.

Read more about what Maise wanted to be when she grew up. When I grow up

Mum, Mimi, tells their story

Something was very wrong

We knew something was very wrong and took Maisie to our local A&E department and insisted on a blood test. We would not leave until this had been done. Maisie was crying and the lovely healthcare assistant listened to our concerns. We found out later that she had survived leukaemia as a child and recognised the signs and symptoms we were describing. She spoke to a paediatrician and a blood sample was taken.

The next hour brought the news that Maisie had acute lymphoblastic leukaemia, with a high white cell count. I felt anger and guilt about my visits to the doctor and being turned away with the assurance that the ‘viral infection’ to Maisie’s ears would clear up.

Straight to hospital

Now none of this mattered. There wasn’t time or energy. An ambulance was on its way to the hospital to collect us and I had an hour to go home and make arrangements for Jack and prepare for our first admission.

That night my husband and I slept in a room with Maisie and I will never forget the silent tears I shed in the darkness as the reality and seriousness of our daughter’s illness set in. How could this have happened to us? Our baby had been born healthy, and thrived for her first year. All we could do was wait for more results and information which would follow the next day: Fathers’ Day.

The medical team were fantastic and supported us as we learnt about the disease and the three-year treatment protocol. Maisie’s named nurse was amazing. She explained everything as many times as we needed and completely understood that we were in shock.

Our first admission lasted 10 days

Maisie was entered into a trial and selected for a third block of treatment. The sequence of treatment and procedures were set out on a timetable. This was a really helpful and we took on information on a need-to-know basis.

It was particularly hard being away from Jack, but family and friends were fantastic and Jack was in good hands. Jack understood that his sister needed to be in hospital and staff and play therapists supported the whole family. We had family picnics in Maisie’s room and I have strong memories of happy times.

Waiting for blood results and procedures requiring anaesthetics became part of normal life and we developed our own strategies for these waiting times. My husband would wait on site, where as I would go for a brisk walk around the block. It was at this time when I first had contact with Children with Cancer UK. Their office is opposite the hospital and I would pop in and make tea or stuff envelopes with tickets for fundraising events.

Treatment spanned almost four years

This was because of complications, mostly infections. Treatment was suspended as Maisie fought several severe infections which put her survival in danger. She also suffered nerve damage from a reaction to drugs which meant she may not be able to walk or talk.

Life became a round of hospital admissions, blood results, treatment and physiotherapy. Maisie lost her hair. This was a side effect of the treatment. I know hair grows back, but for me, this was really traumatic and upset me greatly. The mouth sores, sickness and upset stomachs were almost constant.

Maisie was hospitalised for chicken pox four times and developed warts on her face and body. They lasted almost two years, until she was well enough to have them removed by freezing. It’s a painful process, especially to delicate facial skin, and Maisie insisted that they were all treated in one go. She was so brave. Some of them required painful laser surgery.

How did we manage?

People used to ask me how I managed. I had the privilege of being Maisie’s mother. It was Maisie who coped with a serious and aggressive illness, and it was Maisie who tolerated the aggressive treatment and side effects.

The question is – how did Maisie manage? I don’t know the answer but it is during the early stages of her treatment that she developed a love of tea! Tea with milk and sugar was often the only thing she could manage when she was poorly and she is a massive tea drinker to this day (no sugar now)!

Playgroup and school

Maisie was not able to attend playgroup because the nerve damage meant she was not able to walk. I became her support for physical movement at nursery school.

The hospital assessed Maisie’s cognitive development and we made a decision to move Maisie to a school with small classes when she was six – and she repeated a year. This was a difficult decision to make but a year well spent.

Post-treatment effects and monitoring

Four years after diagnosis Maisie was monitored regularly. Waiting for blood results was always a testing time for us as parents, but Maisie took everything in her stride. I felt guilty and hard when I would not allow Maisie to make a fuss over a needle. I would ignore her refusal, through exhaustion, to complete physiotherapy to strengthen her legs and feet. It hurt a lot – but I did it for you Maisie!

Now it is a pleasure to watch her dance, run and swim and enjoy and share her academic achievements over lengthy, chatty telephone calls home.

Two years after treatment Maisie needed reconstructive surgery to her chest, as an infection following a burn from chemotherapy had ‘eaten’ tissue away. This was such a hard decision because it required a general anaesthetic and carried a risk. Everything went well and the team at the hospital did a fantastic job.

When Maisie was four years old our third child, India, was born. Cord blood from the placenta was collected and stored at the London Blood Bank for 10 years in case Maisie would ever require a bone marrow transplant. I found this stressful – I wanted a healthy baby and a cord blood match for Maisie. We got both. Having India was such a joy for our family and Maisie and Jack love their sister! We all do!

Over the years our named nurse still provided support. I speak with her yearly. It is now 20 years later and she’s living in Australia and we still have our yearly catch-up on family news.

Maisie takes part in a theatrical production.

Where we are, 20 years on…

In April 2015 my husband, Maisie and I all completed the London Marathon, running for Children with Cancer UK. It was a wonderful event and a privilege to raise money for the very charity that supported our family twenty years ago.

This has been a very difficult piece to write. It is not only Maisie’s story, but also that of all the amazing health care professionals, dedicated charity workers, research scientists and the children and families we met and shared many moments with. Maisie, you are truly amazing. I am so, so proud to be your mum!

Jack is now 26 and qualified as a doctor two years ago. In his application he made a connection between his choice to train as a doctor and witnessing his sister receiving treatment for leukaemia.

Maisie has also decided to apply to study medicine as a post-graduate. I am only sorry that, Maisie, you had to go through this treatment. I would have willingly taken your place. I did the only thing a mum could do and stay alongside then, now and always.

Maisie

My earliest childhood memory has to be watching Rosie and Jim on TV with the nurses. And also my hospital Barbie-decorated room.

Over the years I have learnt a lot about my diagnosis and treatment from my family and the frequent check-ups. My diagnosis has never held me back. I am determined to excel in everything I do.

My parents were warned that side effects of the chemotherapy may have meant that I would have been unable to walk and talk – this has not been the case and I have been extremely active by dancing, singing, acting and participating in sports since an early age.

Maisie celebrates with her mother and father after completing a marathon.

Marathons and more marathons…

I absolutely love swimming and have become a very keen runner. I ran my first half-marathon in October 2014 and was so overwhelmed with the sense of achievement and inspired by all those that ran for a charity.

I ran the London Marathon 2015 for Children with Cancer UK with my parents. We all completed and raised £4,570. Children with Cancer UK provided incredible and vital support for my family when I was being treated.

The London Marathon has made me want more. I have recently run the Bristol half-marathon and Exeter’s Great West run in preparation for the Paris marathon that I have signed up to tackle in April 2016.

I want to pursue a career in medicine

I am currently at the University of Exeter in my final year studying Biological and Medicinal Chemistry and have just applied to study post-graduate medicine. I am so grateful for everyone who looked after me during my early years and I want to pursue a career in Medicine so that I can help look after others. A massive thank you to everyone who helped and supported me during this chapter of my life and to my parents, you guys are amazing and I love you so much.

(December 2015)

June 2019: An update from Maisie

In September 2016, I started studying Medicine at King’s College London having graduated from the University of Exeter in Biological and Medicinal Chemistry with a 1st class degree and Dean’s commendation. Here’s a photo of my parents and I from that special day. I’ve absolutely loved my studies and I am excited to start my fourth year of medicine.

In terms of health I’m really good. I’m extremely active playing hockey, swimming, netball and running. This year, I was elected as President of my hockey club. I still have annual check-ups at UCH following on from the treatments I had 24 years ago. I find that this is an excellent opportunity for me to find out more about ALL and the treatment I received, as I was so young when diagnosed (18 months) and treated.

Weddings and even more marathons!

My sister and I were bridesmaids at our brother’s wedding. It was such an enjoyable evening and one we will never forget. Two weeks before the wedding my younger sister India and I ran the London Marathon 2019 for Children with Cancer UK. In the months building up to the event we trained very hard in all conditions and fundraised through bake sales and charity sport tournaments. On the day we were so nervous but the crowds and cheers, particularly from the Children with Cancer UK supporters helped us tackle the 26.2miles in times of 4:15 (Maisie) and 4:53 (India). We hope the money we raised will help fund further research and help children ring the end of treatment bell. Furthermore, we have a car boot sale coming up where family and friends have contributed items and all proceeds from this will go towards Children with Cancer UK.

The support, organisation and enthusiasm from Children with Cancer UK over the years has been phenomenal. I want to say a massive thank you for all your hard work, it’s really appreciated xx

Medical studies and running

In September 2019, I started my 4th year of medical studies. I knew the final two years of medical school would be challenging, so ensured I made time for my hobbies: running and hockey (I was fortunate enough to be elected as President and then treasurer of my hockey club). Training through the winter months inspired me to continue to sign up for half marathons and marathons. In October 2019, I received the news that I had a ballot place for the London Marathon 2020, and I contacted Children with Cancer UK to run as part of their team. Unfortunately, the stormy weather in January and February 2020 cancelled many running events, but I was fortunate to run the Vitality Big half 2020 and run into many other Children with Cancer UK runners. Around this time, I also had the joy of speaking and meeting some inspiring people at the National Running Show, and also speaking at a “Thank you” event for Children with Cancer UK and their top supporters. In March 2020, I ran the Bath half, unknown to me that this would be the last official race for a while.

Whilst training for these events which should’ve taken place in the beginning of 2020 I was becoming incredible breathless during exercise. I contacted my GP and made an appointment where a heart murmur was detected. As I have annual follow-ups appointments at UCLH, due to the ALL and chemo agents which could have effected the development of my heart, I was able to quickly be seen at UCLH who were able to reassure me that there was nothing to worry about. Since then, the breathlessness has stopped and my medic friends have enjoyed trying to listen out for my innocent murmur.

COVID-19 pandemic

In January and February 2020, I was working in St Thomas’ A&E for my emergency medicine rotation, very much unaware of the global events that were going to unfold in the coming months. As coronavirus spread, my University pulled us students out of our placements and we had to adapt to six months of online learning. This was very hard without the clinical experience but we all sat down and focused on learning the theory, ready to hit the ground running for when we could return to clinical sites. In this time, I moved back home from my rented accommodation in London to live with my parents in our family home. We live in the countryside and I think I managed to run more in the lockdown months, than the previous year combined.

Still running

On what should have been the London Marathon in April 2020, I joined other Children with Cancer UK runners virtually for the Together As One run. Following government guidelines, participants ran for an hour, in which I completed 13km, I then decided to run laps of my garden to complete the distance of a half marathon.

My running and virtual studies continued over Summer 2020 in the build up to the postponed London Marathon date in October. When this was moved virtually, I mapped out a route which could finish outside my grandparents house so they could watch me finish (from a distance of at least 2m) the 26.2miles. The weather was horrendous and many of the roads on my route were flooded, but I carried on and completed this virtually. I am now training and looking forward to the 2021 London Marathon .

Becoming a qualified doctor

In August 2020, I was able to return to the hospital to continue my placements. It was really nice to be back in the hospitals and helping out where we could. This week (February 2021) I found out I passed my finals and that I will be starting work as Dr de Wolf come August; it’s been a long road (more of a marathon than a sprint) and I can’t believe I’ve reached this stage. Currently, I am helping vaccinate with the coronavirus vaccines and I am really hoping this helps make a difference. Medicine has really helped me get to where I am today, and I really hope I can help make a difference as I continue in this field.
Maisie, February 2021

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Maisie's story