Supporting families of children and young
 people with cancer in the East Midlands

Seven year old Lizzie lives in Nottingham with their mum and dad, Emma and James… plus three dogs, three guinea pigs, a bearded dragon, a royal python and a horse!

In this guest blog, mum Emma shares the family’s experience of facing childhood cancer during a pandemic, following Lizzie’s diagnosis of Lymphoblastic Lymphoma.

We are the Osbornes and Lizzie is our only child. They are 7 years old and born on April Fools Day!

We are a family of gamers – Lizzie’s dad is a software developer, I’m a Web Broadcaster and Content Creator and Lizzie loves it all.

We have a menagerie of animals at home and being outdoors and exploring the world is something we all enjoy, whether we are out exploring nature, travelling abroad or visiting attractions, new things keep us happy and stimulated.

Lizzie is a precocious kid who is energetic and has a fantastic sense of humour. They love Taylor Swift and enjoy singing, dancing, acting, horse riding and gymnastics. They excel at Maths and Science which engages their inquisitive and curious nature.

Lizzie in hospital

Lizzie is neuro-divergent ADHD/ASD as well, and identifies as non-binary using they/them pronouns which they are very proud of and confident in their identity.

Back in March 2020, Lizzie woke one night screaming in pain from their hip that no amount of massage or pain relief helped with. They were taken to hospital and diagnosed with transient hip and told to return if symptoms persisted. Little did we know at the time that this would turn into a seven-month-long nightmare saga.

For those seven months we were back and forward to A&E for pain that went from hip to lower leg (most persistent) to arm pain. We had to push for a diagnosis but we listened to our instincts and knew something wasn’t right with our child.

After several tests we eventually found out Lizzie was suffering with Lymphoblastic Lymphoma. We were devastated.

Lizzie began treatment and had eight months of chemotherapy, that included infusions via drip, injections, oral chemo, lumbar punctures and many many hospital stays.

Lizzie in hospital

For the most part Lizzie has coped well, they have always been a very pragmatic child – logical and matter of fact and took it all so much better than we did. They are incredibly brave but that’s not to say it hasn’t had a significant impact on their mental health.

Lizzie, as mentioned previously, is neurodivergent and has many sensory difficulties they deal with on a daily basis. Loud noises, textures, food, new people, doesn’t cope with unpredictability or surprises well, is hypersensitive to touch and pain, all of which makes chemotherapy and cancer an extra challenge. Hospitals are noisy and busy and have so many new faces in and out, the sensory overload is almost impossible some days and accommodations for this are very limited.

Lizzie with chocolate

Being diagnosed during the pandemic has had challenges in the family support we might get from friends and family, for us as parents more than anything. Not having family able to hang out with Lizzie when they are well enough is rough for everyone as with cancer treatment you never know what the future holds. Being cut off from that contact has been really unpleasant.

Hospital stays have been a real challenge for me as a parent, they send Lizzie into a downward spiral and, as a disabled mother myself, the energy and exhaustion is doubled. Where we need to be a family unit to function successfully, that isn’t possible with the current hospital policies which has a really negative impact on our family function and mental health. Coping is not easy but what choice do we have?

Lizzie and dad

Thankfully, PASIC have been there from day one. Our Family Support Worker, Joanna, always a friendly face to offer a chat, a cuppa and a shoulder as needed. It’s a relief to have that in the hospital when it feels like your world is falling apart around you. Other members of the PASIC Team have been a constant in emails and offers of support and activities.

Lizzie is making good progress and is now at the long-term maintenance stage of their treatment.

PASIC is a positive outlet which can really boost the spirits when you’re scraping the bottom of the barrel emotionally.