Bilbo the brave, living with cancer after ringing the bell

Picture this, it is Saturday morning, and you are enjoying breakfast with your family. You notice a bruise on your son’s arm. You feel sick, you start asking questions, how did that happen? How long have you had that bruise? You grab your camera and take a photo. You notice another one. Your son explains their existence, one is from a tumble into a fire alarm button at school, and the other is from swimming practice, an innocent swim race in the same lane resulted in a collision with the lane markers. But the telltale purple marks on his right arm cannot be explained. You search his body for more bruises in a panic you count them ten, eleven, twelve, and you keep counting whilst trying to remain calm. I am not neurotic – I am the mother of a child who has had cancer. And even five years on from his diagnosis I live in fear of its return.

Diagnosis

When you are told the words, “Your child has cancer” the world stops. In that moment life as you know it changes forever. In October 2018, my son Bilbo was diagnosed with leukaemia. Instead of enjoying his first weeks at school, my baby had become lethargic and pale, he was a shadow of the energetic little boy we all knew and loved. Innocent bruises that would not heal were the reason I finally called 111. Within a matter of hours, our biggest fear was confirmed.

Cancer turns your life upside down, it alienates you from friends and family as they continue their lives but yours becomes filled with hospital visits, chemo, and continuous worry. Five years on I am pleased to share that Bilbo is cancer free, but the long-term scars will live with us forever.

Cancer journey begins

Bilbo was unrecognisable in those first few weeks bloated from steroids; within weeks he lost his hair. By Christmas, the sickness and nausea had taken hold and Bilbo was losing weight fast. Every day became a battle to find food that Bilbo could eat. We lived in fear of infections, due to his Hickman line. Every cancer journey is different, from the side effects and reactions to treatment. Different struggles as your child not only has to navigate growing up but also growing up with a life-threatening disease.

A cancer diagnosis is incredibly isolating. Our children miss school due to feeling unwell, unexpected hospital appointments and routine hospital appointments. They miss school trips, birthday parties, and other celebrations. They are robbed of the opportunity to build bonds with friends at school, they miss activities and experiences that seem so trivial and normal to everyone else. Cancer takes away their childhood.

Side effects

By September 2019 we had started maintenance, we were told things would get easier. But his daily chemo continued to make him nauseous and as the months went by the anti-sickness was less effective. The daily food battles were exhausting.

But Bilbo’s biggest battle came towards the end of treatment. Parents of children with cancer are no strangers to infections, the fear of sepsis means IV antibiotics are often needed, along with overnight stays in hospital. After one such stay the area where his cannula had been taped into position got infected. A few weeks later we noticed a rash on his hands, and then he got an infection in his toe. We were a year off treatment and Bilbo’s constant skin infections had the doctors stumped. We started seeing a dermatologist. His body started slowing down, he was tiring more easily. A simple walk into town became too much. We started the daily battle of antibiotics, steroid creams, and tape to keep his fingernails in place.

Bilbo lost his confidence and withdrew from activities he used to enjoy. A rash appeared around his lips which made him self-conscious. My gentle kind little boy became angry and prone to physical outbursts. We had all reached breaking point.

The longer Bilbo’s issues went on the less active he became, putting on weight and losing the ability to do simple tasks like dressing himself. He could not play sports; he was not picked for teams because he was slow and un-coordinated.

Cancer impacts the whole family

Cancer cast a dark shadow over our little family. The impacts of Bilbo’s treatment and trauma impacted us all. Whilst Harrison, Bilbo’s younger brother, did not go through cancer he was an innocent bystander to every traumatic experience. He was only two when Bilbo was diagnosed, and it was a very confusing time for him. We tried to shield Harrison as much as possible, but he had a front-row seat as we negotiated and pleaded with Bilbo in that last year.

And that final year nearly broke me too. Up to that point I had been incredibly strong not because I am brave or superhuman but because I had no choice. I perfected my game face.

But in that last year, I quite literally became the punch bag for him. I was the only one who could apply the creams and assess his infections. And with that responsibility I became the person he hated the most.

Every night I would have to find the strength to tackle the bedtime routine. Mostly with him screaming, crying and being out of control. And every night I adopted different tactics. Negotiation, tough love, bribes. And I broke my own rule, I broke down in front of him on more than one occasion. Instead of being the strong one, cancer had broken me too.

Finally, after almost three and half years the day we had been counting down finally arrived and we stopped treatment.

Post treatment side effects

The end of treatment was a bit of an anti-climax whilst we were glad to stop the chemo it was not really the end. In some ways, it was just the start. Once we stopped chemo Bilbo very quickly regained his taste and appetite. It was a joy to watch him enjoy food again. But whilst life was improving the physical, emotional, and mental scars were going to take longer to heal.

We started by rebuilding Bilbo’s strength through physio. He was determined to be able to join his peers in playing football and swimming. But his legs were weak, he got tired easily, and he was slow. He would get upset that he was not picked for the team, or his teammates would not pass to him. It was soul-destroying to watch.

At school he was below expectations, he had missed so much school and the constant cocktail of drugs had made it difficult for him to concentrate.

But the worst came one night when I tucked him into bed. He was quiet and I asked what was wrong, he said, “I don’t want Harrison to get cancer like me.” I was taken aback and explained that whilst I could not promise he would not ever get cancer it was very unlikely. On further probing Bilbo believed that his brother would also get cancer when he turned 5 because that is what happened to him. I was heartbroken.

Looking forward

I am writing this 18 months post-treatment. Check-ups are now every four months; the physio has signed Bilbo off. Through sheer hard work and determination, Bilbo has pushed himself to get stronger. He has caught up at school and we could not be prouder.

But the fear never leaves you. And last week as we innocently ate breakfast together and I noticed the bruise I was thrust right back to that moment, when our world stopped. I insisted everything was going to be OK, I explained I just needed to take some photos so we could monitor the bruises and get some advice from the oncology team.

And then I was flawed because my brave, strong, incredible son looked at me and said, “I don’t want cancer again mummy, and if I do have cancer, please don’t make me go to school if I lose my hair” my heart broke into a thousand pieces, because in that moment I knew that his cancer scars run deep. I was reminded that my 9-year-old little boy has suffered more than any child should suffer in a lifetime.

All I could do was reassure him and wait…wait for the bruises to heal, wait for the oncology team to call back. Because cancer is a waiting game. We will wait for the next check-up, and we wait for the day that we finally do not have to think that an innocent bruise is not the beginning of the nightmare starting all over again.

This time it was not a relapse; I am pleased to report Bilbo is OK, but this is not the end because once your child has had cancer your life is never truly the same again.