Alex's story
Hayley has kindly shared a heart-warming story about her son, Alex, who was diagnosed with neuroblastoma at the age of two. Alex’s story demonstrates just how important treatments and research can be for the lives of children with neuroblastoma and their families.
Alex was diagnosed with neuroblastoma at just two years old.
In September 2020, Alexander was two years old when he became very poorly. He lost half a stone over two weeks, was spiking temperatures all the time, being very sick, lethargic and sweaty, with no energy or motivation at all. We took him to A&E, only to be sent to the ‘out of hours’ GP. There he was diagnosed with Gastroenteritis and we were told to keep him hydrated and to give him paracetamol for the fever.
The following Tuesday, his Nursery Teacher phoned to say that Alex just wasn’t right. While all the other children were dancing and playing, he was laying on the mat, pushing cars around. We had a telephone appointment with the Doctor that day and an in-person appointment shortly after. After an examination, the GP ordered blood tests in the Luton & Dunstable Hospital. Within a few days, his results came back with distressing news.
“It’s like time stopped, it was the worst feeling ever, beyond comprehension. This couldn’t be happening to our little baby boy, this can’t be real.”
Alex was admitted to hospital and after further tests, the team sat us down to tell us they had found a mass in his tummy and that he needed to be transferred to Addenbrookes Hospital in Cambridge. The following day, we were in the new hospital for yet more tests and conversations around the high chance that Alex has cancer.
Alex’s third birthday
We were well into October by this point and on Alex’s third birthday, Wednesday 28th October 2020, he was diagnosed with Stage 4, High Risk Neuroblastoma. Two days later, he started chemo. The primary tumour was in his tummy, on his adrenal gland. Over time, we learnt that he had secondary tumours in his skull, spine, liver, lymph node and both legs.
Alex’s treatment was in five stages. He had chemo from October 2020 to January 2021, then over 20 hours of surgery at the end of January 2021, where they managed to remove around 80% of the primary tumour.
Alex was in hospital for the whole of March, for high dose chemo and stem cell rescue, with a couple of those weeks spent in isolation. In June, every day for a fortnight, Alex had radiation on the primary tumour in his tummy. From July 2021, to January 2022, he was on immunotherapy - a mixture of AntiGD2 and Retinoic Acid. He finished treatment at the end of January 2022. He still had his NG tube and wigglies for months afterwards and had to remain on antibiotics until April 2022.
The impact on families cannot be understated
During Alex’s treatment, the world turned upside down with Covid coming along and lockdown happening. This made hospital visits tricky because the family couldn’t come onto the ward to see him. Being swabbed before each visit and during every stay was also extremely traumatic for Alex. Despite this, he was a complete trooper throughout the whole ordeal. At one point, he was on chemo with Covid and MRSA! His big sister, Caitlyn, who was 6 when Alex was diagnosed, fell down the stairs at home and broke her kneecap, so there was a time where both Alex and Caitlyn were being pushed about in wheelchairs. It’s been hard on our whole family emotionally and challenging at times with work commitments too.
“Cancer has robbed him of so much of his growing up.”
Alex the superhero!
Alexander has been such an inspiration to us as a family.
He had his third birthday on chemo and his fourth birthday on Immunotherapy; cancer has robbed so much of his growing up. He’s been so strong and there have been days where we thought we were going to lose him, but more often than not, he always had a smile on his face and buckets of fiesty-ness to keep us on our toes. We live about an hour and half away from Addenbrookes Hospital so being stuffed in the car for a three hour round trip was never fun, but we learnt lots of car games and he caught up on lots of sleep.
Alex is now in remission, and we couldn’t be prouder of him. He has tests and checks regularly and handles them like a champ. The chemo has permanently damaged his hearing and his eyesight, so he was having hearing and sight tests every six months at Addenbrookes too. We’re very aware that he won’t get the all clear until he’s been in remission for five years, so we don’t take anything for granted and at the moment - we’re living from one set of tests and checks to the next, and hold our breath for test results each time.
““We have a new understanding of how important research into neuroblastoma and other childhood cancers really is. “”
Alex has no fear of heights!
A new understanding
He’s now in school and loving it! He’s the bravest boy and is happy splashing in the sea and rivers, riding his bike, baking cakes, watching Spiderman and dancing around the house like a loon!
We have a new understanding of how important research into neuroblastoma and other childhood cancers really is. We try to raise awareness and donations for charities by completing challenges (100 skips a day for a month was a tough one!), sponsoring friends and donating through charity purchases.
Thank you Hayley for sharing your story.
more needs to be done
Sadly, much more research into neuroblastoma is needed. At Neuroblastoma UK, we strive to fund research into new, more effective and less punishing treatments for children with this rare cancer, like Alex. Donate today to Neuroblastoma UK, to help the World Cancer Day’s fight and help save young lives.