for children with neuroblastoma in palliative care

Alfie Sharpe was born on the 19th of August 2007. Cheree and Steven describe their only child Alfie as “The most beautiful boy in the world. Cheeky, happy, full of character and with the most infectious laugh imaginable; his smile would melt anyone’s heart.”

In September 2011, Alfie became unwell and after numerous visits to his doctor was taken to Accident and Emergency at their local hospital in Kilmarnock. Tests and scans revealed that Alfie had stage 4 high-risk neuroblastoma – an aggressive childhood cancer. Neuroblastoma is the most common cancer outside the brain in children under five years old. Often it is only diagnosed when it has already spread throughout the body, making the cancer ‘high-risk’.

“We were devastated,” said Cheree and Steven “but we vowed there and then to never give up. We had to keep fighting to get Alfie better.”

Alfie's treatment

Little Alfie’s treatment regime included eight rounds of rapid COJEC chemotherapy, four rounds of TVD, two rounds of MIBG therapy, surgery to remove the tumour and high dose chemotherapy with stem cell transplant.  Sadly with minimal response to treatment, Alfie required further chemotherapy to try and clear the disease.

At that time, the family began fundraising for Solving Kids’ Cancer (then the NCCA UK) to help Alfie and other children like him, should he need to follow an expensive treatment path not yet available in the UK.

After eight rounds of temozolomide with irinotecan, Alfie was able to receive long infusion immunotherapy with CIS retinoic acid here in the UK.

At the end of October 2013, after two years of continuous treatment, Alfie’s parents received the news they had all fought so hard to hear. Amazingly, six-year-old Alfie showed no evidence of disease. “We never gave up hope that Alfie would one day be clear of this disease,” said Cheree and Steven.

For Cheree and Steven, this was the second most amazing day of their lives, the first being when their precious, wonderful Alfie was born.

Throughout all of his treatment, Alfie remained full of beans with an immense passion for life, having as much fun as possible. Fire engines were always one of Alfie’s favourite things. He knew everything there was to know about the fire service and loved going to his local fire station where he was made an honorary member. Cheree said: “He truly couldn’t wait to be a big boy and be ‘Firefighter Alfie Sharpe!’”

The family began planning their future together; holidays, parties, Christmas and things they wanted Alfie to see and experience in life. A united family, this amazing journey forward was supposed to be one free of neuroblastoma.

Making memories

Devastatingly, in March 2014, Cheree and Steven’s world was torn apart. “We found out that neuroblastoma had returned. Alfie had disease in the brain and this time there were no further treatments available anywhere that could help him. Our son was now terminally ill, just two weeks after completing all of his treatment”, reveals Cheree.

For Cheree and Steven, faced with such traumatic news, their priority was for Alfie to experience as many of those lifelong plans as possible in whatever precious time they had left.

“We wanted to make every moment magical as our fairytale was not going to be happy ever after. No amount of time would have ever been enough,” said Steven and Cheree.

Alfie’s loving parents had just five and a half weeks with their amazing son from the moment they learned he was not going to get better. During that time memories were created that were to be cherished forever.

Cheree explains, “Alfie was a child, a farmer, a chef, a superhero, a racing car driver and a fireman but most of all, away from the hospital and relentless medical procedures, Alfie was happy. Surrounded by love and his family, he was one in a million, right up until the very end. Neuroblastoma may have had Alfie but Alfie didn’t have neuroblastoma. He never let neuroblastoma stand in his way. He was utterly inspirational.”

Alfie’s best-loved foods were sausages and garlic pizza and he loved many things in life including Disney characters like Belle and Princess Sofia. He believed in fairies and all things magic as well as Superheroes.

While trying to come to terms with the loss of their own hero Alfie, Cheree and Steven reflect on what Alfie would have wanted. “We know Alfie would want other heroes and princesses to have opportunities to create happy memories. These happy times would be loved and treasured forever by children and their families. Alfie was determined to never give up hope or stop believing and this is why we have decided to set up ‘Alfie’s Wishes’”

Steven and Cheree say: “We will forever love Alfie more than words can describe and our hearts ache with a hole that nobody could ever fill. Alfie, you are truly amazing and perfect in every way.”

Love Alfie’s Mummy and Daddy

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You can find out more about Alfie on his In Memory page.
 
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FAQs

Alfie’s Wishes is a grant for families to organise a wish or special treat for their son/daughter receiving palliative care for neuroblastoma. Please read these FAQs along with Alfie’s Wishes terms and conditions and grant application form.

1. What is a Wish?

2. What is a Treat?

3. Who can apply for a grant from Alfie’s Wishes?

4. Can more than one application be made?

5. How do I refer a child?

6. What information do I need to provide?

7. Where do I send the completed application form?

8. How will I know if my application is successful?

9. What can I use the funds for?

10. What are the benefits of sharing the work of Solving Kids’ Cancer?

11. How will my donation to Alfie’s Wishes be used?

Terms and conditions

Click here to read the terms and conditions