Ethan's family visited Ben's Retreat in August 2023.
Last December our world was turned upside down when a simple suspected virus turned into something much worse!
Our son Ethan had been unwell with sickness and headaches for a couple of weeks. We were told by the GP and A&E he had a virus, another week passed with no change and feeling very worried we took him back to the GP. This time they were concerned and we were told to take him to the local hospital. They carried out a CT scan and a few hours later on Christmas Eve we received the devastating news that our little 18 month old boy had brain cancer. We were in complete shock and just couldn’t comprehend what we were being told. In what felt like seconds we were sitting in an ambulance on our way to Southampton General.
It was there we were told he had Group 3 ‘Infant Medulloblastoma’ a very rare and aggressive type of cancer. He had a large Embryonal brain tumour that was blocking the tube in his brain that the ‘Cerebral Spinal Fluid’ flows through, the blockage was causing pressure that in turn was giving him the headaches. This was his immediate threat to life and so within hours he was given an emergency operation to insert a shunt to drain the fluid.
Then a week later on the 29th Dec, the amazing Mr Chakraborty (lead Neurosurgeon) at Southampton Hospital carried out a 9 hour operation and successfully removed the whole tumour.
Fortunately Ethan had no long lasting effects from surgery and was home 2 weeks later!
Whilst home we finally got to be a family again for a little while, Ethan has 5 year old twin sisters Amber and Freya and they were very worried and upset he was so poorly, they didn’t really understand what was going on, just that they knew he wasn’t there and they missed him very much!
Ethan started a programme called ‘Headstart 2’ at the end Jan this year, he had to have 5 cycles of intense chemo, followed by a cycle of high dose chemo with a stem cell transplant!
He did amazing throughout, he suffered a lot and reacted to certain meds, he was very poorly at times and spent most of the last 6 months isolated in a hospital room due to contracting infection after infection. Due to how poorly he was he rarely got to come home between cycles, over 6 months he managed about 3 weeks at home on and off. It was very tough for myself and my husband to be away from our girls and Ethan and having to split ourselves between them every other day. Still, we just did what had to be done and did our best to keep things as normal as possible for them.
The 10th June not only marked Ethan’s 2nd birthday, it also marked the date he received his last dose of Chemo! We were told to expect a long recovery after his transplant, at least 8 weeks, he surprised us all by being discharged after 5!
That was 4 weeks ago and we are so so happy to be back home as one lovely family again! The girls have got constant smiles on their faces and Ethan keeps just jumping on them and giving them kisses and cuddles! It’s been lovely settling back into family life.
He’s still needing regular hospital apps and has been having weekly platelet transfusions but he’s doing so so well! He had his end of treatment MRI a few days ago, the results will be with us in 2 weeks!
Thanks to the Ben Saunders Foundation not only are we going to have a very special time away just being a family but we will have a much needed distraction whilst we await the results of his scan!
We are not sure what the future holds, Ethan’s cancer has a 40-50% chance of relapse but we have learnt to take each day as it comes and enjoy every second together! We will never take life for granted again!
Thank you so much to the Ben Saunders Foundation for helping us make more amazing memories!