Has your child been affected by neuroblastoma? Call 020 7284 0800 for help and information.

Harvey’s Journey

In Loving Memory of Harvey Hext 30.07.06 – 29.11.15

There are simply no words to describe how heartbroken and devastated the team at Solving Kids’ Cancer are this morning after learning that our beautiful and courageous little superhero Harvey Hext has earned his wings. Harvey’s mum Sarah writes, “Harvey fell asleep in our arms yesterday surrounded by people he loved and who loved him very much. He is free from pain now but we miss him dearly. My beautiful cheeky Monkey. Life will never be the same.” Our heartfelt thoughts go out to Sarah and David, Harvey’s older sister Olivia and Harvey’s partner in crime and twin brother Spencer.

At 8 years old, identical twin Harvey has an abundance of cheekiness. He also has Down Syndrome.

In 2010, Harvey’s parents, Sarah and David noticed that Harvey was walking less and less, unusual for a previously active 3 year old. He had diarrhoea and was complaining of tummy ache.

Sarah explains, “His stomach was distended and getting bigger and bigger. The first few times I took Harvey to the GP they put it down to food poisoning but I wasn’t convinced, he would lie awake at night crying with pain. We took him to A&E twice, both times to be sent home with no diagnosis. A hernia surgeon also told us that Harvey was fine.”

Doctors told the family that they couldn’t find anything wrong and if they remained concerned that they should seek advice from their local hospital. This is exactly what Sarah and David did. A simple blood test was enough for the doctor at that hospital to refer Harvey to the clinical investigations unit in Bristol. On 20th June 2010, Harvey was given an ultrasound scan.

Devastatingly, Sarah says, “David and I were now being told that a massive tumour had been found in Harvey’s tummy. We heard the awful words ‘your son has a tumour.’” An ultrasound had been discounted months before when David and Sarah were told that Harvey’s tummy was more than likely full of air.

The hours that followed were hours of panic. Not only did Harvey have a tumour but his twin brother Spencer was called to the hospital too to have an immediate ultrasound. Thankfully Spencer was fine.

Sarah recalls that day, “In the morning we were all fine, Harvey wasn’t right but life was good. By the afternoon our lives were destroyed and our nightmare began.”

Weeks of tests followed including a biopsy of the tumour followed by more and more tests. The doctors needed to be sure of the diagnosis. Harvey’s biopsy confirmed that the tumour was stage 4, high risk neuroblastoma, a particularly aggressive form of childhood cancer.

Neuroblastoma is the most common cancer outside the brain in children under 5 years old. In most cases it is only diagnosed when it has already progressed to a late ‘high risk’ stage.

Complications followed…

As David and Sarah were soon to discover, there were no other cases worldwide of a child with Down Syndrome and neuroblastoma.  Unfortunately Harvey is the only known child to have this combination.

Harvey followed the protocol of COJEC chemotherapy but unfortunately his tumour did not respond. The chemotherapy was switched to a stronger regime called TVD [a combination of 3 chemotherapy drugs] but sadly again there was no significant response. The next plan in treatment involved surgery to remove Harvey’s tumour. Sarah says, “The surgery was performed by the very hernia surgeon who had months previously suggested that all was fine.”

Harvey’s operation took 14hrs. The surgeon managed to remove 80% of the tumour but the remaining 20% was not operable. Sarah explains, “The tumour was wrapped around vital organs and too dangerous to tackle.”

Harvey had a month to recover before the family were referred to UCLH in London to begin two rounds of MIBG therapy. This is a targeted radiotherapy and meant Harvey was locked in a lead lined room for two weeks with limited contact, only with his parents and the nurses. As his radiation levels dropped he was allowed visits from the play leader.

David and Sarah were saddened a month later when Harvey was called back to repeat the process because his initial scans showed that the MIBG therapy had only had a partial response to the remaining tumour.

Sarah explains, “We spent months away from Harvey’s siblings seeing them only through Skype. It was all very difficult for Harvey’s twin brother Spencer to understand; he also has Down Syndrome. A cancer diagnosis has a devastating effect on siblings but this is not always obvious at the time.”

When the family returned from London, Harvey was given an 18 month course of Cis Retinoic Acid. The hope was that this would mature any tumour that was still active. This treatment seemed to be working but the family were left devastated in October 2014 when a routine scan showed that, “our darling boy had relapsed; the tumour in his stomach was once again active and a further new tumour had been discovered,” explain David and Sarah. The new tumour was in Harvey’s chest and was a continuation of his primary abdominal tumour.

More trips to London to meet with doctors followed to decide further treatment. It was agreed that surgery was Harvey’s best chance. This took place in January 2015 where surgeons successfully removed the entire new tumour in his chest.

However, as it is too dangerous to remove the abdominal tumour, Harvey is described as having residual disease and will require further monitoring scans as part of his follow up. At this point, no further treatment is planned.

Harvey’s family are fundraising for SKC to help Harvey, and children like him if additional treatment is needed which may not yet be available in the UK. The risk of relapse with high risk neuroblastoma is higher than with many other childhood cancers and through Harvey’s Journey, SKC  can ensure that Harvey can access further treatment should he need it.

David and Sarah say, “We are still living that nightmare every day; the fear is with us constantly.”

Please make a donation to SKC to help Harvey and children like him. Every donation, no matter how small, will make a difference. If you can help by holding a fundraising event to raise funds, please contact the fundraising team at SKC on 020 7284 0800

Harvey’s parents are extremely grateful to everyone who has supported Harvey so far.

To make a donation to Harvey’s Journey you can visit www.justgiving.com/HarveyFundraising

To donate via your mobile phone text HARV97 and your amount (£1 – £10) to 70070

Terms and Conditions for Journeys

All donations are paid into Solving Kids’ Cancer Europe’s general funds to further its general charitable purposes. The funds raised by this Journey are not restricted for the child’s use. However, the trustees of SKC have agreed to designate 93% of funds raised by this Journey to help the child and their family pay for potential future treatment costs and all other associated costs including travel and accommodation. We will use the remaining 7% to pay for some of SKC’s administrative and fundraising costs.

If the child no longer needs the funds, or if the trustees decide, at their absolute discretion, that the funds should be used for a different purpose, they may redesignate all or part of the 93% for SKC’s general charitable purposes. We are very grateful for your charitable donation.

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