THE ETHAN PERKINS TRUST Registered No: 1131071 |
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Ethan was born on the 2nd July 1997. He was perfect, our second son
and although the age gap between the two boys was 7 ½ years,
our family was complete. Ethan’s primary school came to know and love Ethan and wrote a wonderful eulogy to Ethan. It goes like this,
“He was liked and respected by children and staff alike. The children voted him on to the school council, which he led with distinction. Nobody, adult or child ever had a bad word to say about Ethan, because of course he never had an unkind thought or word for anybody else. The only criticism any of us could make of him is to say that the only person who did not appear to realise he was a special child was Ethan himself.” During Ethan’s last year of primary school, from January 2008 on, Ethan became very lethargic and felt ill. Ethan would experience chest and breathing pains quite frequently; initially we put this down to a hairline fracture to his rib that he experienced on New Years Eve. Doctors issued Ethan with an asthma pump, which did not improve matters. By March Ethan had missed quite a bit of school. We were frequent visitors to our local G.P. trying to understand and unravel the mystery. During March things became worse, Ethan experienced slight balance problems, his eyes had a glazed drugged look and his voice became slurred. He still had not given up attempting to play football, he would turn up with his eyes streaming looking as white as a sheet. We asked our G.P. if we could pay to see a private paediatrician. However, Wales apparently does not have private paediatricians. Our G.P. referred Ethan to the local NHS children investigative unit at Singleton hospital. Waiting lists at this stage were 2 months plus and we were becoming desperate. When May came Ethan still had not improved and felt more tired by the day. He said that he felt dizzy and had headaches and his vision had started to blur. We went to Ethan’s football tournament, an annual event. It became glaringly obvious to all around that something wasn’t right. Parents from the football team all noticed Ethan’s condition and even those with medical backgrounds were at a loss as to what illness this could be. Finally on May 14th 2008, after a visit to the opticians, they picked up that although his eyesight was fine, he had jerky eye movements and gave us a letter for our local G.P. Ultimately the simple co-ordination tests that help to diagnose and monitor brain tumours was used by our G.P. The following day we received a phone call to bring Ethan straight to Singleton. On the 15th May 2008 the first doctor to see Ethan picked up on the left side of his face having paralysis and his swallowing was not normal, he was then given further co-ordination tests and finally a ct scan. We couldn’t believe we had missed these signs. The news we were given was devastating “Ethan has a mass on the brain”. Everything fell into place. Our world was shattered. Time seemed to pass so quickly that day, plans were made for an ambulance to take us to the University of Wales Hospital, The Heath, our nearest children’s oncology department. We were given a glimmer of hope, a possible operation, to remove this mass. We stayed in hospital that night and Ethan was immediately started on dexamethasone, which reduces swelling in the brain or raised pressure inside the skull associated with brain tumours. The following day 16th May, we waited all day for an MRI, which ended up being postponed till the following day. Finally on the Saturday 17th May, Ethan endured a 2 ½ hour MRI, the oncology team then met up with radiologists to diagnose the mass. My husband and I were called into a small private room with members of the oncology team, where we were shown Ethan’s MRI results. I couldn’t believe the news, the tumour was the size of a plum and located in the worst possible area the brain stem. It was inoperable. It was also blocking the flow of liquid movements around the brain and signals to the body. His palette was not working and eating should be monitored at all times. We were allowed to take Ethan home for the rest of the weekend, but had to return on the Monday to discuss the diagnosis further, with our new team from Sky ward. It was a very scary weekend. When we returned on the Monday, treatments were discussed. Basically,
the option was 6 weeks of radiotherapy (30 days), with concomitant
temozolomide, a phase II trial. Eventually wean Ethan off the dangerous
muscle wasting steroids. The prognosis was devastating, we would be
lucky to get a year if the radiotherapy actually shrunk or stopped
the tumour growing. My husband and I both finished work immediately
and set out to fight this disease and find a cure. We also knew at
the same time we wanted to spend every minute of every day with Ethan.
Time was precious. On 3rd June 2008, we visited Velindre Cancer Unit, to have a mask fitted before starting radiotherapy. Ethan was very brave, his Dad, Mum and brother Joe were so proud of him. When the plastic shell was finished, he had a ct scan to pinpoint radio areas. On 7th June courtesy of Ethan's Uncle Dean, we went to Monster Jam, where we all had a great evening out. The day before Ethan started radiotherapy the family all had a BBQ and fancy dress party along with a magician. Ethan started radiotherapy on 19th June, which he took in his stride, never complained, despite the long car journeys to and fro every day. He would hop on the bed and tell the nurses to zap him and laugh and joke with them. On 27th June, the Joshua foundation arranged a caravan for the weekend in Tenby to cheer us all up. We also decided to make every day fun and listened to the final Harry Potter book when we travelled our daily journey for treatment. We made lots of plans, for July. Ethan wanted a fancy dress Birthday party We had lots of fun choosing costumes. Ethan always had a fabulous sense of humour and decided to go as a teletubby. We also hired a limo for the event. The night before the party Ethan had a bath and found the hair just above and around his ears had started to fall out. He had also put on a bit of weight because of the steroids. Despite this he made a brave effort and thoroughly enjoyed himself. The party on the 5th July was a huge success.
During July we would go visit his Aunty's farm, where he rode an old quad that his uncle gave him. On 19th July we went to a Volkswagen show in Caldicot where the idea of owning his own beetle formed in his mind. On the 22nd July Ethan attended his Primary School's leavers assembly and won several awards. Ethan finished radiotherapy on the 30th July, taking everything that life threw at him in his stride, the organic diet, no sugar all the various homeopath medicines. Our family went out to celebrate the end of our daily commute and radiotherapy. The radiotherapy must have worked as Ethan's symptoms had all disappeared, even his palette started working again. At this point the doctors told us we may even have 2 years prognosis (double the time). We had 4 weeks off the chemotherapy and decided to make the most of it. On the 2nd August we had a superb week at First Stone Cottages, donated by the Christian Lewis Trust. We went to Oakwood then fishing, quad biking, drove to nearly every beach or small town in West Wales. During the rest of August we had lots of days out to fun places like Folly Farm and another Volkswagen show. On 12th August Ethan, his Dad and friends went to see Swansea City AFC in the Brentford Carling Cup game, which they won. 26th Aug and the 30th the gang (Seawards and Perkins) went to support the Swans.
September 1st our family of 4 along with 10 extended family members all flew out to Eurodisney, staying in Sequioa Lodge. The Joshua Foundation funded the whole trip for the 4 of us. We had been to Eurodisney in 2004, but this time the holiday was extra special, because of the famous fourteen. If only never never land were real, we would have stayed and Ethan would not have to grow older, that would mean Ethan's tumour would never re-grow. All our family have special memories to treasure from Eurodisney. When we returned home, Ethan had been given tickets from LATCH for a football match hospitality box at the millenium stadium and he and his Dad went to watch Wales play on 6th September. Ethan had only ever truly wanted one thing in his life
and that was a motorbike. It seemed like from At this point in time our whole family were looking desperately for a cure and found the Burzynski Clinic in America, they claimed they had long term survivors of dipg. We were willing to sell up everything to raise the money for this treatment. We discussed this option with our Dr at the Heath, who advised us against it. Another family from the UK had tried the option and the prognosis had not altered. I joined an online support group for DIPG (Diffuse Intrinsic Pontine Glioma) parents and found a parent who had tried the Burzynksi Clinic. She wasn't happy with the treatment her child had received and again the prognosis had not altered. There were also issues with insurance, if things took a turn for the worse we would be stuck in America, isolated from family and friends. Finally we came to the conclusion that we did not want Ethan hooked up to a intravenous backpack 24 hours a day for 4 weeks, and we would have a battle getting our Dr's to administer the treatment in the UK. On the 23rd September Ethan came home elated from the
Liberty Stadium as the Swans had won the local derby game. The following
day we travelled to Manchester, where the Round Table had arranged
a wish for Ethan. The wish they had arranged was to meet Manchester
United and watch them tr
On the 2nd of October Ethan met with Swansea City AFC and watched
them train and met some of the players . He and his Dad even sat in
on a press conference with Roberto Martinez, the manager. They were
then sent to the Liberty Stadium for a guided tour and photographs
with the players. Ethan was then invited to be a mascot for the 4th
October Saturday game against Wolverhapmton
When we returned from Spain, Alex (Ethan's cousin)
had his 11th Birthday and a Halloween theme.
On the 5th November Bonfire night, Ethan worked hard
to cook all the food for the evening party held at our house. He invited
family and close friends. It was a great evening. Instead of Guy Fawkes
Ethan and his friends used a cuddly toy and as we didnt have a fire
just fireworks, the toy On the 8th November we were given tickets via LATCH
for a hospitality box in the Millennium Stadium. 5 of our family attended
the Wales v S Africa match and shared the box with the family December began and of course the usual colds, coughs etc were running their course. We also had a second opinion arranged for the Royal Marsden in Surrey with Dr Darren Hargrave. Unfortunatley Ethan came down with flu and we had to postpone this appointment. We spent the time cooking and buying Christmas presents. Ethan had an early Christmas present off his Unce Steve, a VW Beetle called Figo. By the 15th December Ethan had started to vomit and had vision and sensation problems. We revisited the Heath Hospital on the 18th December and were hoping that it was anything other than progression. Even our Dr's thought it may be a bleed or swelling from post radiotherapy effects, as the timescale for progression seemed too soon. The CT devastated us, it showed the monster was back and it was the same size as at diagnosis. Ethan would probably have another 2 - 3 months and the chemotherapy was discontinued. We went home with a bag of pain medication and anti sickness drugs. Ethan was happy to be off the chemotherapy and didn't question the situation too much.
Christmas was looming and we were determined to make this the best Christmas ever, despite the news. We had booked a luxury chateau for 5 nights in the South of France for over the New Year period and 14 of us were going. It was a busy time, no time to dwell. Surprisingly enough the following day 19th December, he, his Bampa and Dad went fishing. Ethan made a huge picnic to take with them, enough food for an army. Despite the bitter cold, they had fun and talked and talked. On 20th December, we went shopping for fishing tackle and went to the Mumbles. Sean, Ethan's older cousin called and they made cookies. The 21st was Joe's 19th Birthday and we went for a family meal. The 22nd December, they were fishing again. Ethan even caught a little fish, which they released. The 23rd was last minute shopping. On Christmas Eve Ethan went shopping with his Auntie Deb and I finished wrapping the two boys Christmas Presents. We couched up on the couch that evening and watched home alone, we read our usual Christmas Stories, Twas the night before Christmas and The Little Fir Tree, it was magical. Christmas Day was so special, we all agreed it had been the best Christmas Day ever. We recorded some of Christmas Day and it still makes us laugh and smile. Boxing Day Ethan went up his Nana and Bampa's where
the whole annual Perkins clan meet every year to celebrate. Following
this Ethan went for a drive in a Ferrari, courtesy Ethan would often say when we visited the day ward unit at the Children's Hospital of Wales, "these children are really sick aren't they Mam? They are much iller than me, when I'm better maybe we can help them". He would laugh at the nurses when he gave blood once a month on daybed ward and all the children in beds would smile, or try to see who was having fun. That's where the Ethan Perkins Trust comes into play, by helping these brave little soldiers.
Copyright @2009 The Ethan Perkins Trust, a non profit organisation. All rights reserved |
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Ethan
was a happy, healthy child who loved life and wanted to live it too
the full. He was very academic without trying and had excellent sporting
abilities. Life appeared to be a breeze for Ethan and our family.
We were always very involved with the local community, as we helped
coach and run junior football. Ethan grew up on the side of a pitch
watching his older brother and when he became six, he joined a local
team, who his Dad helped coach and manage. The years passed and we
had much fun and love as a family. 
“He
was never loud, but always had a voice and an opinion which was worth
hearing. He never put himself forward, but unfailingly set a fine
example for others to follow. He was intelligent and hard working,
but wore his learning and diligence lightly. As an excellent sports
man and a consistent representative of school teams, he always matched
his ability with hard work and effort. He measured his many achievements
against his own goals, not by comparing himself with others. “
the
age of 5 years on all his friends had motorbikes. Throughout Ethan's
treatment, we had discussed this with his Dr's and they had advised
that if Ethan regained his balance following radiotherapy a quad bike
would be suitable. We drove to Kidderminster to purchase Ethan's new
quad on the 15th September 2009 and when we returned with it, Ethan
was elated. 16th September Ethan and the gang went to watch the coca
cola championship at the Liberty Stadium.
ain
at Carrington. Ethan met all of the squad and his favourite player
Ryan Giggs. He was filmed by MUTV, which we have a copy of. Ethan
and his Dad had a superb time and after the meet and greet session
they proceeded to a tour of 
,
Wanderers.
He walked out with the players, had official photographs and was even
featured on soccer sunday match highlights. Ethan was with Jordi Gomez
walking out as mascot and within a few minutes Jordi had scored Swansea's
first goal. Ethan's highlight was walking off the pitch and Roberto
Martinez shouted Ethan and shook his hand, before he took his place
in the stand behind the dug out. We will always remember that moment
with gratitude and pride. We added the photos and signed shirt to
another of his bedroom walls. On the 9th Ethan and his Dad met the
Wales football squad and on 11th October they were at it again another
hospitality match at the Milenium to see Wales v Lichtenstein.
Two
weeks later on the 18th October Ethan, his Dad, Mum, Bampa, Nan and
cousin William went to Spain with holiday costs paid for by Ethan's
Bampa and Nan. We had a fabulous time going on day trips to waterfalls,
zoos, museums and lots of interesting places. My favourite memory
was Guadalest, it was just so peaceful there. Ethan and his cousin
William thoroughly enjoyed Mundomar, where they had a 30 minute dolphin
experience, which we recorded. It was a very special time for our
family. Joe stayed home to mind the dog and had University, but Ethan
would phone him almost every day. Our last night there was so much
fun and still provides so many fun memories. Ethan even managed to
win the cards and got his Nan and Bampa to wear mohican wigs, as a
default prize for the loser..jpg)
who
had donated the tickets. We had a great day out and made friends with
a lovely family. The family were very kind and arranged for Ethan
to meet, Mark Jones and Stoddard (Wales rugby players). On the 11th
November Ethan, his Dad and their usual friends went to see the Carling
Cup 4th Round. 21st November the gang went to see the Coca Cola Championship
against Birmingham City. November was a very good month for Ethan,
he felt so well, he went to town with his friends and never stopped
still for long. He was back in training for his football team, despite
receiving chemo. Ethan's uncle Steven even managed to get Ethan a
piano, which we all played with. On 29th November we were lucky enough
to gain hospitality tickets for the Wales v Australia game. Ethan
met Colin Charvis there.
of
his Auntie Deb's friends, Mike and Jen. The speed they reached is
unpublishable, but Ethan thought it was fantastic. Our family all
met up at Nan and Bampa's, where the Green's celebrate. It was a fun
but busy day and a sign of things to come, Ethan had fallen asleep
very early at 8.30 pm. On the 27th December we decided to take a run
up to Aunty Kim's farm. He rode his quad and came off, which shook
him up a bit, but he got out of his wet clothes, had a cup of tea
and something to eat and seemed to recover. That evening Ethan fell
asleep at 5pm, by this time Ethan was vomitting on a daily basis,
no particular time of day and only really once a day. At this stage
he began to experience pain in his lower back, groin and the front
of the top of his legs. We cancelled our New Years Chateau in France
and all the family agreed it was best to stay home. Despite how ill
Ethan must have felt, on the 30th December, he wanted a trip to the
Mumbles with his brother and older cousins . We all eat huge breakfasts
and spent lots of money in the arcade. Ethan won his cousin and some
of the family prizes, which they treasure. When we returned home Ethan
had a bad night, his back was spasming, the headache had returned
and he found it hard to breathe, but he didn't moan, just said don't
talk about it and I wont feel so bad then. New Years Eve came and
just when we thought Ethan wouldn't be up to hosting the party at
our house, he surprised us all by working hard all day, preparing
the food for the event and what a banquet it was. Everyone came to
ours, where we had fireworks and food. The children played on the
computer and pool table,wii and playstation, but we ended the night
early when Ethan started vomitting. From here on in the next eight
days took an ever larger downward turn, but our family stayed firm
and committed themselves to making Ethan comfortable and loving him
as much as possible. We have to say a big thankyou to our friend,
Senior District Nurse Lynne Driscoll for her invaluable support throughout.
On the 8th January surrounded by his Mum, Dad and brother Joe, Ethan's
fight ended. We miss him and his contagious laugh, his smile, his
braveness, even his wickedness but always with a sense of morality.
We always knew Ethan was a special boy, who lit up our lives, but
we never realised how many other peoples lives were touched by Ethan.
We hope he is happy and safe and wait in the hope that we will be
reunited one day.