CLIMB FOR LILY - A 3 YEAR OLD WITH A GRADE 3 EPENDYMOMA

On 20th August 2022, Ruby Frankish and I will be climbing Mt. Snowdon in order to raise money for Young Lives Vs Cancer and for Lily. When it comes to charities and Cancer, especially childhood cancer, it is a subject that we all feel empathetic and supportive towards, but never actually understand the true implications until we experience it first hand. Young Lives Vs Cancer, along side other admirable and benevolent charities, have played a significant role in supporting us throughout Lily's battle with Cancer. Not only did they provide us with advice and ongoing support, they provided us with guidance, encouragement and compassion during a time of which we have never felt so lost. For these reasons, I hope that we can raise money to support them in helping other families in the way that they helped, and continue to help us.

On 6th January 2022, I took Lily to our local Urgent Care Centre after ourselves and others noticed that her head was tilting towards the left and she was losing her balance when walking. Two symptoms of which I thought indicated a minor illness such as an ear infection. However, infections and eye sight problems were ruled out, and Lily got referred to a CT scan as Diana Princess of Wales Hospital, Grimsby (DPoW). Lily attended the scan on Friday 7th January, after which we received the advice that the scan was clear and Lily was to attend a paediatric physiotherapy clinic for a 'cricked neck'. Lily's balance gradually got worse over the weekend, resulting in us taking her back to the hospital. Lily became an inpatient at DPoW during which she remained her energetic, bubbly, mischievous self, running around the ward and playing with the Nurses. Lily had an MRI scan under General Anaesthetic to scan her brain in more detail. However, our worst fears were confirmed on 11th January 2022 when Lily took a turn for the worst and became extremely lethargic to the point she could not be roused. It was on that day that the Doctors told her Dad and I that Lily had a brain tumour and was going to be blue lighted via an Ambulance to Sheffield Children's Hospital immediately.

Lily spent the next 5 weeks on Ward 5 at Sheffield Children's Hospital, during which she 'celebrated' her third birthday. Those 5 weeks consisted of Lily having an External Ventricular Drain put in situ due to there being excess fluid on her brain, two 10 hour craniotomies to remove the tumour, lumbar punctures and multiple scans. During Lily's first craniotomy, Lily lost a lot of blood and the surgeons described the operation as being very 'touch and go'. She received a blood transfusion and a lot of fluid. This resulted in Lily getting a chest infection and spending four days in the High Dependency Unit on high flow oxygen and receiving one-to-one care as she could not breathe on her own. The operations that Lily underwent resulted in Lily losing the ability to swallow, speak, sit up, crawl, stand, walk, and just about everything she had the ability to do prior to the operation. A nasogastric tube was placed through Lily's nose and into her stomach so that she could receive the nutrition she needs. After months of intense physiotherapy and speech and language therapy, including after her discharge from Sheffield Children's Hospital, Lily has finally regained her ability to do all of these things, however she remains weaker and lacks balance.

A biopsy was taken during Lily's first operation to find out what her tumour was. The day we got the results is a day I will never forget, Lily has an aggressive, Grade 3, Ependymoma, a type of Brain Cancer of which has a high rate of recurrence in the brain and spine. The tumour was located in her Posterior Fossa, and has left her with slight Posterior Fossa Syndrome.

The next part of Lily's journey was 33 rounds of Proton Radiotherapy, all of which were under General Anaesthetic. In order for Lily to receive this treatment, we had to leave Sheffield Children's Hospital and fly straight to Essen, Germany. We spent 9 and a half weeks living in Germany whilst Lily received her radiotherapy and continued to learn how to eat, drink and walk again.

We are now currently going through the last part of Lily's treatment plan; Chemotherapy. Lily is undergoing 9 rounds of intense Chemotherapy at Sheffield Children's Hospital. For each round, Lily has to stay in hospital for three days. The repercussions of Chemotherapy are intense, Lily is often sick, she relies on her NG tube for nutrition and medications, she lacks energy, has lost her hair and her immune system has been severely compromised. She has recently received her second round of Chemotherapy and has already had to have a blood transfusion and platelet transfusion. However, despite the hardships of Chemotherapy, Lily remains the bubbly, charismatic, outdoor loving toddler that she has always been. Although her life will now consist of scans, tests and complications, we look forward to treatment free days and a sense of normality.

Albeit the challenge of climbing Mt. Snowdon does not compare to the challenges that Lily has been, and continues to go through, we hope to represent the perseverance, determination, resilience and positive attitude that Lily has shown throughout. No words will do what we as a family, especially Lily, have gone through but I hope to raise awareness, and money, to help others in similar situations. Lily has always been a sociable, affectionate, inquisitive, humorous child. She loves to be outdoors, being around animals, and interacting with others. And although I am biased, Lily's journey has highlighted how incredible and how loved she is by many; lighting up every room she walks into. At the beginning of Lily's battle with Cancer, we believed that we had lost that version of her, but today we are starting to see our Lily again.

Please donate anything you can towards this amazing charity and towards our beautiful, inspirational little girl. We appreciate all of the support and kind gestures that we have received and we will continue the fight against Cancer together.