Saturday, 28 December 2013

MRI scan

The end of the week before Christmas then was his MRI scan. Typically it fell on his last day of school. He was rather cross with me as I only found out the day before that it was going to happen. He was exhausted so I didn't tell him until that morning. He woke up to discover that he was not allowed to eat breakfast, and that he was going to miss Show and Tell. At least he'd miss his spelling test! It was his first scan in Truro, so it was better than doing another Bristol trip. He was to have a general anaesthetic. Joel hates canulas so he always has to have gas to knock him out. The play specialist gave Joel a poorly monkey to keep. It's Joel's job to put his canula in and give the monkey his medicine. This is to try to get rid of Joel's phobia, so that he's happy to have his blood tests done in America.

I always ask for a sedative for Joel before he has the gas, to make it easier on him. He's scared of the word 'medicine' so he has to have his 'final drink' - he's not easily fooled, apparently it tastes disgusting. Fortunately, when Santa visited the grotto for all the CLIC Sargent children the week before, he left a present for Joel. This was enough to persuade him to drink it. He even opened Thomas's present for him!

The anaesthetist was fantastic and told Joel a story about visiting the animals at Newquay zoo, and how he had to smell the parrot and monkey poo! Enough to make him take some big deep breaths! He usually pretends to be a super fast racing car driver with breathing apparatus, but as he's becoming wise to this, a new story worked a treat.

He took a long time to come around but then happily played with the lego from Santa. A couple of hours later he was able to get into school to say his last goodbye's before the Christmas holidays and his impending trip to America.

Practising lying still

Joel getting into position in Bristol

The week before Christmas was a hectic one. It started with Monday and Tuesday in Bristol so that Joel could practice lying still again. He had been practising at home with his mask which was made a couple of weeks ago during a previous Bristol trip. When his mask was first made, he managed to lie still in it, clipped down for 15 minutes. With more practising at home, this time he managed 29 minutes. He did brilliantly, with a little help from the 'Ice Age: Christmas Special' which I'd downloaded onto the ipod. Unfortunately we've since found out that when he's having his treatment he won't be able to watch a DVD, but will only be able to listen to an audiobook or music. He's now struggling with this, so this week is going to have to be some intensive practising. We've tried Peter Rabbit, Peppa Pig, The Twits.. no good, none of those are working for him. I've just downloaded an hour long meditation for children and have high hopes!

Joel was also taken into the X-ray room so that he could practise being around different equipment, and experience moving machines. He struggles being on his own, yet he needs to practise this as I am not allowed to be in the room with him in America. It was suggested that we try a long ribbon where he holds one end, and I hold the other, so that we can tug it to 'communicate' with one another.

The practising is really important, as if Joel cannot lie still for around 40 minutes for each session, then he will need to have a general anaesthetic. This would have to happen every Monday to Friday for six weeks. He would first have to have surgery to have a hickman line put into his chest. He then would not be able to eat for 6 hours prior to the general anaesthetic every day, and he would not be able to swim with the hickman line. He would be in hospital for half a day Monday to Friday, whereas if he can lie still and not have the general anaesthetic he can get away with a couple of hours a day in hospital, with the rest of the day to do other things, with no restrictions to his food intake! A hungry Joel is not a pleasant experience. He eats constantly as he quickly runs out of energy.

Sunday, 8 December 2013

Joel's Journey


Joel is the 5 year old son of Martin and Alison Erents. Earlier this year Joel was diagnosed with a brain tumour.It is in his brain stem, making it too dangerous to operate.Joel underwent major brain surgery in April to relieve the fluid that had dangerously been building up.He recovered amazingly from this and soon returned to school.Within 6 months he has had 6 brain scans, 4 general anaesthetics, and around 20 hospital appointments.Throughout this he has been an absolute star.He has taken it all in his stride.

Unfortunately in October his scan showed that the tumour has grown.As part of Joel’s treatment he needs to travel to America to have Proton Beam Therapy.This is a form of radiotherapy.Traditional radiotherapy has major impacts on a growing brain, whereas this treatment aims to target the tumour directly.

The service from the NHS has been fantastic and they are funding the treatments, basic living costs and flights for Joel and both parents to stay in Florida for 8 weeks whilst Joel receives his treatment.Joel will need treatment at the hospital 5 days a week for 6 weeks.He will have to lie absolutely still whilst the treatment is carried out, otherwise he will need to have a general anaesthetic for each of the 30 treatments.

This blog has been set up to keep people up to date with Joel's journey. We have had phenominal support from friends and family and the staff of the NHS. We have also had amazing support from the Governors, Staff and Students of Penair School, Humphry-Davy School and Treleigh School. In addition to this a local Falmouth business have agreed to help fund the flight of Thomas Erents.

The Erents family are eternally grateful for all of this support being able to focus on Joel at this time rather than worrying about finances is a true blessing and we truly thank all of you from the bottom of our hearts.