Community News – Royston Fundraiser for Ethan

Royston Fundraiser for Ethan

A family in Royston are hosting a fundraiser for a brave little boy, Ethan, at the Royal British Legion on Saturday 9th September from 1pm till late.

At aged five, Ethan was shockingly diagnosed with Pineoblastoma, a grade 4, fast growing pineal tumour. Since then he has undergone 3 brain surgeries, one lasting over 6 hours, numerous rounds of chemotherapy, and finally he travelled with his family to Germany for 33 doses of proton therapy. His family have single-handedly paid for all his treatment including his time spent abroad, with no help.

Luckily Ethan has been clear of cancer since treatment ended but he still continues to have regular MRI scans and is now having physiotherapy to aid with his walking.

So we’re arranging this day to provide some much needed funds for him and his family, to keep his spirit alive and let him know we’ve all got his back and we love him! Go Ethan!

The fun day takes place at the Royal British Legion, Mill Road, Royston, on Saturday 9th September from 1pm till late.

– Kids games

– Radio controlled cars

– Bouncy castle from Cambridge Bouncy Castles

– Face painting

– Visit from a Royston Fire engine

– Local DJ

– Pool competition

– Raffle

– Auction

– Food and refreshments

We hope Royston will all get behind him and his amazing family.

We’re also looking for donations for the raffle, and donations to the JustGiving page.

We’re raising £2000 to To raise funds for a little boy and his family that have been dealing with Pineoblasma a pineal tumour for the last 5 years..

Please donate to my JustGiving Crowdfunding Page and help make it happen: https://www.justgiving.com/crowdfunding/FundraiserforEthan or email Kelly kellyausten1@icloud.com

Thanks for your support

Read more about Ethan’s story here, written by his parents:

Back in November/December 2017, Ethan started showing symptoms of a stomach bug. At the time we thought nothing of it as children catch all kinds of things from School. A few weeks went by and the ‘bug’ has seemed to disappear. All was well until end of January/beginning of February 2018. Once again, he had symptoms of a stomach bug, but this time, he had gone off his food and started sleeping more. Again, all this disappeared and we thought nothing of it.

During March 2018, he had been complaining of headaches and was getting tired and falling asleep often, so I took him to the doctors who told us that they were migraines and he should grow out of them. ‘Just give him calpol’ they said.

April came along and I had to collect him from school a lot as his migraines were causing him to be sick and fall asleep in class. Again, drs told us there was nothing to worry about.

End of April, my mum and I noticed one of his pupils was enlarged. That day, I had to collect him from school again as he had been sick and was complaining his side hurts. We got to a&e where they did a couple of tests to see if there was anything to worry about. His eye sight was great, and all his movements were fine. We asked about his enlarged pupil and they didn’t seem bothered about it. They gave him a dose of ibuprofen and sent us home.

Fast forward to June. 6th June 2018, my mum took him to the opticians as I was working. Around midday, I heard a little voice at work shouting mummy. I turned around and saw my mum and Ethan. I asked what they were doing there and my mum said that we needed to go to a&e and give the staff a disk of images and paperwork from the opticians and not leave until Ethan had had a CT scan.

We arrived at Addenbrookes a&e and handed them the disk and paperwork then within half an hour, he was in having a CT scan. An hour later we were taken to a side room and told the devastating news that Ethan had hydrocephalus (fluid on the brain) and a 10cm tumour and needed emergency surgery.

After that, everything went into a blur. He had surgery the following morning, to place a straw like tube from his brain to his stomach to relieve the pressure in his brain as well as a biopsy. 10days later we were given more devastating news that Ethan had Pineoblastoma, a rare and highly aggressive type of brain cancer which only affects children.

Because it’s so rare, his consultant needed to speak with professionals in America to figure out the right course of treatment. 6 rounds of chemotherapy to begin with which turned into 7.

Before he could start chemotherapy, he had a big debulking surgery to try to remove as much of the tumour as possible. This went on for 6.5 hours. Unfortunately due to the placement of the tumour, they could only get 80% of it. It also caused damage to his pituitary gland which makes several essential hormones. Because of this, he needed to be put on lifelong steroids.

After this, he had surgery to place a Hickman line so the nurses could give and take blood, painkillers, chemotherapy and anything else he needed. After a few rounds of chemo, he had an MRI and there was improvement but his appetite had gone so he needed a NG tube (feeding tube) to be placed so we could still give him all the nutrients he needed via liquids.

Unfortunately the tube he had placed at the beginning to drain the fluid from his brain (conduit) had got blocked so another surgery was needed to place a ventriculoperitoneal shunt, which is a programmable device and tube which helps regulate the fluid around the brain. This would become a life long addition to Ethan.

Before his 5th round of chemo, we were told he qualified for treatment called Proton beam therapy. At the time, there were only two places in the world we could have that done. Essen in Germany and Jacksonville in America. The WPE in Essen were the first to accept so, after his 6th round of chemo, in December 2018 we flew over to Germany to meet the team, have scans, blood taken, and marks put on his back so they knew where to place the beams and for him to have his radiation mask fitted. This was a 3 day visit.

On returning, a few days before Christmas, Ethan caught chicken pox and needed to be in isolation at Addenbrookes over Christmas and new year so the nurses could keep an eye on him as chicken pox reacts differently if you’re on chemotherapy.

On 6th January we were allowed home which gave us just under 24 hours to get ready to leave. On 7th January, my mum, Ethan and myself headed out early to Dover to catch the ferry to France! Ethan loved it, me not so much. We arrived in France ready to drive to Germany. In total, it took us around 8 hours.

We arrived at our lovely apartment and were met by his father and his paternal nanny and grandad who had also come out for the duration of the treatment.

We settled down ready for what the next 6weeks were going to throw at us.

Unfortunately due to the extra course of chemo Ethan needed, his blood levels were not good at all so we couldn’t start treatment for 2weeks. So, for the first 2 weeks, we explored Essen and the local parks. This would now mean we were in Germany for 8 weeks minimum.

Finally came the day to start treatment. Ethan would get put to sleep 5 days a week for his treatment, with weekly blood and consultant appointments.

Everything was going great, he was full of energy for the first 3weeks, but then the side effects kicked in. Nausea, lack of appetite, not much energy, but he still wanted to go to the beautiful parks which was so nice.

In February we celebrated Ethan’s 6th birthday and my mum’s 50th. Luckily we didn’t have treatment that day, we had a lovely time.

The weeks got easier and Ethan was getting his energy back. We encountered all seasonal weather whilst there. Beautiful sunshine, lots of snow, some very wet days but we made the most of it.

Finally came the last day of treatment and time to go back to the UK. Ethan finished his treatment and once he had woken up, and had some food, it was time to ring the end of treatment bell. The staff gave him a Certificate and said some lovely words, it was very emotional.

We arrived home and now the wait would begin again. We had to wait a minimum of 6 weeks for an MRI to see if the proton beam had worked.

April 2019 came and it was MRI day. Ethan gets put to sleep for them because they last on average 1 hour 10mins due to them scanning his head and spine, plus it’s very noisy.

A week later, we got the amazing results that there was no evidence of disease and he was clear of cancer! All that was left to do were quarterly MRIs and 6 monthly endocrine appointments.

This year, Ethan’s had to restart physiotherapy due to his weakened leg muscles and his knees. We are hoping this will help him.

By April 2024, Ethan will be cancer free for 5 years. He’s had many obstacles to overcome due to the operations and treatment causing cognitive issues and other problems within the brain, but he’s such a happy 10 year old with so much energy.

Friends are raising £2,000 for our family that have been dealing with Pineoblasma a pineal tumour for the last 5 years.