Since Ali's Dream began, we have met with many high and lows. The missing her gets stronger and the hole she has left gets deeper. We are being helped through this by our initial dream to make a difference, which has been surpassed by the help and support that has been shown, guiding us through our darkest hours and lining our darkest clouds.
We have raised a fantastic amount and now within our reach is the beginning of our sixth piece of research, funded by us, and helped by our many good friends and the new friends we have met along the way.
So to all those families helping us in memory of their own loved ones, young and old, we welcome you in our fight and thank you from the bottom of our hearts - so much has been done but there is still so much to do
Thankyou, Thankyou, Thankyou....
To all who have helped us and continue to help us in our Ali's Dream, and
FOR ALL THE CHILDREN. SO BRAVE.
Ali's Dream needs your help in the fight against childhood brain tumors by way of donation. If you would like to help us in this fight, please click on the button below and donate using Just Giving.
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Charlie was born on 21st July 2012, he was my first child and my husband's third. It was love at first site... Why did I wait so long to become a mum? It was wonderful!!! We had an amazing 11 weeks, the best of my life. He was such a good baby, sleeping though the night and just delightful.
From 8 weeks he became a fussy eater, so I took him to numerous health visitors and doctors. They just said he was a big baby, his weight was evening out and that he had reflux. I also questioned why he slept so much, but everyone just told me I was lucky!
On Tuesday 9th October there was something clearly wrong. He had started crying a lot over the weekend and became very lethargic. We took him to the doctors and they sent us straight to hospital as his soft spot had started to bulge.
Everything then happened so quickly, within 24 hours our world was shattered.
They did an MRI scan that night and discovered a massive tumour in his brain. We were just in a daze and numb. They transferred us to Addenbrookes the next day and the nurse there said she couldn't believe Charlie was still conscious and breathing on his own. They showed us the ct scan that night. I felt sick, it was massive and right behind his eyes in the middle of his brain.
The next day they did an MRI scan and then they operated to do a biopsy and put two shunts into his brain.
Charlie was diagnosed with a rare brain tumour Pilomyxoid astrocytoma. It is a newly discovered tumour which is rare in babies this young. There is little research into this tumour and therefore not a very good prognosis.
Two days after surgery they took me into a room and said to call my husband and prepare for the worst. We just lay in bed with him all night. Two days later he came through and the doctors then said they would operate and remove the tumour. We were elated, they gave us 6 weeks to feed him up and get him strong.
He slowly started to get better and he laughed for the first time and really started smiling. We were allowed to take him home until the next MRI scan. Within a week one of his wounds got infected and we had to go back to hospital.
We then spent 3 weeks just waiting in hospital, I couldn't believe how, considering he was so poorly and had undergone major surgery that he seemed so happy. He kept laughing and smiling away, playing with his favourite snake and monsters. It gave us so much hope.
We then went home again for one day only, the next day he had a seizure and we rushed him back into hospital.
They did another MRI scan on Charlie and we were told the tumour had shifted and almost doubled in size, it had spread to his skull and down his spine. They said there was nothing they could do, to operate would be inhumane. They said he would have a few days, two weeks maximum. My baby wouldn't have his first Christmas.
Our worst nightmare was coming true, we just couldn't believe it. We were sent to Keech Cottage on 28th November to spend his last few days.
Charlie was so determined and didn't want to leave yet. He didn't smile again and we spent the next four weeks watching him fade away. The worst thing was that we couldn't hold him as he was in so much pain. We tried to hold him each day but there were a few days when all we could do was lie next to him, as the slightest touch made him whimper in pain.
We tried to make this time as special as possible, for Charlie to do lots of things and for his brother and sister to spend time with him. Keech were amazing to all of us. We had our Christmas Day with him. All the family came in the morning and then it was just Charlie and us.
We spent most of the day cuddled up in bed. He started to have continuous seizures and the doctor said this was it. My husband and I spent the night cuddling him.
Charlie was with us for five months and five days, he died in my arms early Boxing Day. He changed our lives forever and touched so many others. He has left such a massive gap in our lives and nothing will ever be the same.
Our lives became a rollercoaster and still are. We just want a cure to be found, to stop other children and their families suffering so much.
Life was turned upside down in August 2000 when James, aged 9, was diagnosed with a brain tumour and went through 2 huge operations. He has been left with severe speech difficulties, weakness down his right side, educational and visual difficulties.
Time stood still for months on end but through sheer determination James has got back on a skateboard and then his bike after 2 years. He rarely complains, is always cheerful and has no sense of danger! He is a delightful endearing lad who has melted the hearts of all who work with him and has been spurred on by such a huge dedicated team of specialists in all areas especially in physio.
His life has enriched us and has shown us how much good has come out of this evil "tumour" We live in hope and live life to the full, savouring every moment that we have as a family.
It has also left us with anger and frustrations at the "not knowing" enough about brain tumours and why it happened, life revolves around every annual scan and a younger son who is severely affected by "a brother who is not the same as before his operation".
Although things are still a nightmare for him, he seems so happy and he knows that he is a very lucky boy compared to other children who have had to endure severe treatments and those who have died. Our hearts go out to those families who have lost their fight against such a dreadful disease. We hope Ali`s Dream keeps striding forward to raise money and research to combat this "beast".
Amanda & Trevor Crossley
I wish to tell you the story of Sabrina who was born in 1990.
At 7 months old she was diagnosed with a malignant ependymoma. After removing the tumour surgically and undergoing various treatments of chemotherapy and radiotherapy, Sabrina relapsed at 18 months and again at 22 months old and 7 years old.
I always thought that Sabrina was someone special, not because she was my first born but because her eyes are full of life and although she went through a very difficult time in her early years, she always managed a smile and between bouts of vomiting from the side effects of the Chemo, Radiotherapy and Tumour re-growth, she would play quite happily!
Sabrina relapsed 3 times and although we thought that maybe God needed her for his angelic work, we realized that her work was here on earth, where she would become an inspiration to all the children.
Today she is a 13 year old teenager with all its implications. The long terms effects of the radio-therapy means that she has to have growth hormones but is now 5 feet 2 and still growing. After her 3 rd operation, she developed a left sided hemiplegia.
As a strong willed person, she makes do but also excels at delegating any task she chooses not to perform!!
The message I would like to give to you is that sometimes, when you think that there is no hope left, somewhere, hidden deep inside, is a little light that shines, The light of Love, and through Love, miracles happen. Sabrina is a living example! Never give up no matter how challenging life appears to be. God bless.
Chris was diagnosed with a medulloblastoma brain tumour on the 9th July 2001when he was 10 years old. He had been ill for some time with intermittent morning headaches and vomiting, which GP's put down to migraine and we put down to not wanting to go to school because they always seemed to happen Sunday night Monday morning.
Chris became more difficult at home, he was bad tempered, spiteful and arguing with his brother although the school said he was an angel. It got to the point where we were dreading the end of the school day.
The migraines became worse; at the end of May 2001 we drove down to Disney Land Paris as a surprise half term break. When we arrived Chris became very ill to the extent that we were planning a very quick return home. The next day Chris had rallied round and was looking forward to his day in the park so we decided to stay.
Things settled down until two weeks before Chris was diagnosed. The week before his diagnosis he was very unwell with almost a constant migraine although he still tried to join in with family activities in between sleeping for long periods of time. Our GP was called out on the Friday as Chris had been sleeping for 48hrs and he did not want to eat or drink, the GP prescribed an anti nausea drug and told us it was not a brain tumour because the eye hospital would have picked it up on a recent visit.
During the weekend before diagnosis Chris seemed a little better but by Monday he was very ill again. On the Monday the GP visited Chris and when he looked into his eyes he insisted that we took Chris to the John Radcliffe as soon as possible because he had found some swelling behind the eyes.
Within 24hrs of being admitted to the John Radcliffe we were told that Chris had a brain tumour and if nothing were done he would only have four weeks to live. Our first feelings were relief that they had found something wrong and we weren't neurotic parents. Then the shock hits you but before you have time to take in diagnosis you are thrust into the world of surgery and treatment plans. We were told because of the location of the tumour Chris may not have survived the surgery if he did he may be paralysed or have speech problems.
After initial surgery to relieve the pressure Chris under went 6 hours of surgery to remove the tumour. When we saw him in intensive care he was able to talk to us because he had not been ventilated and he could move all of his limbs, which was big relief. Chris spent 41 days at the Radcliffe Infirmary as he picked up the MRSA bug, which again made him very ill.
Chris endured nine operations, 31 days of radiotherapy, 5 out of 8 Packer chemotherapy treatments as he was beginning to develop kidney and hearing problems, which are a side effect of the chemotherapy treatment and 18 months of intravenous antibiotic treatment for the bone infection caused by the MRSA.
Chris has been left with a right sided weakness that has meant he has had to learn to use his left hand to write, tires very easily, has very little short term memory and has found it hard to make friends because he sometimes has a problem with his speech and he cannot join in the football games etc because he has a piece of bone missing from the back of his head.
Chris is back at school full time and is coping quite well although he is working to a reduced timetable and has a Special Educational Needs statement which allows him 10 hours tuition either one to one or with the help in class of an Learning Support Assistant. He started hormone replacement treatment in February 2004 due to the radiotherapy damaging his pituitary gland. Chris will need scans for the next three years and so far all previous scans have been clear.
Since the completion of his treatment Christopher has started to enjoy life little more than before. He has joined a Karate Club, which will help with his balance and confidence, does his homework without any arguments, (bliss) and has a more positive outlook on life.
Peter and Carol Harrison
The tumour was called a Desmoplastic Infantile Ganglioglioma and is very rare. It currently accounts for under half a percent of all children who present with brain tumours. At the time of my operation, there were just 22 other known cases of it worldwide and we estimate that at the end of 2004, this total had risen to around 100 cases. My daddy has now found twenty eight other families with children who have had this particular tumour - nineteen in the United States, three in Australia, one in Italy, one in Ireland, one in India, one in Mexico and two in the United Kingdom. All of them have made contact after seeing my web site on the Internet
This tumour is usually very large and partially cystic and will almost always occur in a suprafentorial location with a very dense desmoplasia. This has become a well known 'hallmark' of this particular tumour. It will more commonly occur in boys and usually within the first two years of life. 'Total' surgery resection is the preferred method of treatment. Chemotherapy and radiotherapy (radiation treatment) may also be necessary in some cases depending on the age of the patient and the exact location of the tumour.
In my case, the tumour had been growing for a very long time before I had surgery and because of this, it had pushed my brain to the other side of my head. This has left me with a right sided hemiplegia which is a form of Cerebral Palsy. I also have fine motor and learning disabilities. I now have an adult sized VP shunt fitted inside my head, which drains the excess CSF from inside my head to my tummy. My original cysto-peritoneal shunt which was fitted at the time of my operation had to be replaced in October 2002, following shunt failure. Although the new shunt made my headaches go away and I didn’t sleep all day, I’ve lost 90% of my vision, so I was registered blind in December 2003.
Following Gareth's MRI scan on the 31st May 2005, we returned to the Sick Kids on Monday 13th June for the results. The scan is still considered to be 'abnormal' but this is due to the very large space that still exists in Gareth's head where his tumour was. There have been some cranial changes, but there is no evidence of tumour re-growth, which of course is what we really wanted to know. Overall, Dr Shaw was very pleased with his progress. Gareth's next appointment is in October 2005 when he sees Dr Minns, his neurology consultant.
David & Julie Brandon
Jack was diagnosed with a malignant brain tumour in April 1996 when he was just 15 months old.
Almost overnight our world came crashing down, Jack’s life seemed to be slipping through our fingers like sand. The surgery and chemotherapy – devastating for an adult – left our bright, articulate child battling for his life. But Jack was a fighter, defying the odds on numerous occasions.
Time seemed to stand still, but slowly life improved and we began to strive to become a “normal” family again. Jack, such a cheerful, gorgeous boy, inspired all who met him. We would not be the family we once had been but we were determined to get on with life for our three boys.
But events conspired against us.
A recurrence in 1999 meant further surgery and radiotherapy. Devastating for Jack but our only hope of a cure. Jack was so incredibly brave and despite the terrible side effects he remained his cheerful, inspirational self. Once more we plunged into the unknown, not being in control of Jack’s future. Once more we picked up the shattered pieces of our lives.
Then, in 2003, a routine scan showed another recurrence. Darkness enveloped us as we realised we’d lost our hope of a cure. Surgery followed and bought us precious time with Jack. Then another recurrence in 2004 further shattered our lives. Yet more surgery – but Jack coped so well, we were convinced he could go on battling forever. But in January 2005 the sand in our fingers had almost disappeared. This time surgery did not work. We were forced to face our worst nightmare. Forced to watch Jack deteriorate before our eyes and before his brother’s eyes. No more wrestling, no more colouring, barely clinging to life.
We were not ready to say goodbye. We thought he would go on forever. This was all a mistake – when would someone realise that this should not be happening to us? The pain is unbearable. It has to be a mistake.
The void left in our lives is tremendous. We will never be able to fill the emptiness we are left with. It is all consuming, suffocating. We don’t want time to heal our broken hearts, we don’t want to pick up those shattered pieces and try to rebuild our lives. But we will. For our boys we will learn to live another day. Our numbness and disbelief will begin to fade but I know we will never be complete again.
Albert and Beverley D'Lima
Ellie was 11 years old when she was diagnosed in 2007 with a brain tumour. She raised thousands of pounds for charity, including over £5,000 for Ali's Dream.
I don't know why, but in February 2007, when my husband was working away one night, Ellie expressed a wish to sleep with me.
She was 11 years old and normally I would have told her to sleep in her own bed, but for some reason I let her. I was really distressed when Ellie had a fit in the early hours. We called an ambulance and Ellie had another very big fit when we reached hospital.
An EEG scan was requested and the results appointment scheduled for 12 March. By this time Ellie was being sick every other day. We went for the results and were absolutely stunned to discover it was a brain tumour. We weren't expecting that - I thought she had epilepsy. Within three hours we were at Leeds General Infirmary being given the news that the next day Ellie would be having an operation to remove the tumour, which could leave her unable to walk or talk.
The operation took seven and half hours (we had been told to expect four) and the last two hours felt like an eternity. It was very scary. We saw the surgeon in the corridor on the way to see Ellie and he told us they had had to do things they hadn't been expecting. Thankfully, within hours, Ellie was awake and talking and soon announced she wanted McDonalds chicken nuggets and chips, which is what she got!
Having had the operation on a Tuesday, Ellie was home on Friday and went into town shopping on Sunday. We had to wait until the end of March for the results (even though we had been told it would be a week) and then found out that Ellie would need radiotherapy and chemotherapy.
On 16 April Ellie started six weeks of radiotherapy, which necessitated a 140 mile round trip from our home in Scarborough to Leeds each day. We were so proud of her - each morning Ellie had the radiotherapy and each afternoon she went into school, was able to sit her Year 6 SATS and passed them all! Even with the chemotherapy, which Ellie was able to have orally at home, she continued to go to school. She had 26 months of chemo with 23 days off, followed by five days on each month.
There were a couple of set backs. A few weeks after her first operation, Ellie had to have a second one because her wound had got infected. And then, in July, another operation was needed because a cyst had grown inside her head and forced her scalp to open up. Again Ellie awoke and requested McDonalds chicken nuggets and chips!
On the other hand, we had some good times too. Every 10 days since her diagnosis, Ellie went for reflexology and this really made a huge difference. When she was tired it really energised her. In October 2007, from monies raised by our local community, we were able to enjoy a wonderful family trip to EuroDisney. And for Ellie and me, our 'thing' which kept us going was to save up to go to London every two months or so to see a West End show. Her favourites were Dirty Dancing and Chicago.
In July 2008, Ellie had another seizure and a scan revealed a marble-sized lump. From then on she had fairly regular seizures.
In August 2008, Ellie asked if she could do some fundraising and she managed to raise £10,000 in just a week which was split between five different charities.
Ellie had a check-up in May of 2009 and was told that it looked like the chemo had done its job. The joy of this, however, was very short-lived. Ellie soon became very poorly. Another scan revealed that the lump, discovered in July 2008, had grown, but there was limited treatment for it.
Ellie was unwell through June and July, but picked up through the late summer, until October when she became very poorly again. She was having a lot of trouble reading and writing and we organised for someone to help her when she felt well enough to go to school, usually for three to nine hours per week.
Something which might be of interest to other patients is that when Ellie was having the chemo she was never poorly. She took Manuka honey every day and also homeopathic medicines. Usually when cancer patients have chemo their taste buds change and Ellie started to get like that, but as soon as she started on the homeopathy, it reversed it. I fought for one year to get homeopathy for Ellie on the NHS and now all cancer patients are entitled to free prescriptions. I believe it should be available to anyone who wants to use it. Not all GPs are aware of the potential benefits of homeopathy, but I truly believe that the homeopathy helped Ellie enormously.
Ellie continued to go to her reflexology sessions and sometimes her uncle Glenn, who is a singer/songwriter, took her. One day, while in the car, Ellie asked Glenn if he would write a song for her. In fact, they wrote “Butterfly's Wings” together and included lots of the things which had been important to Ellie over the last five years – the loss of her Nana; and her hair through radiotherapy and lots of positive things like dancing lessons, riding in a limousine on her birthday, wanting to own her own nursery and look after children, hence the line 'with the little ones I play'. The guardian angel in the song refers to the one she wore around her neck and the crystals refer to her reflexology.
Ellie's condition deteriorated further towards the end of 2009, but she managed on her better days to help sell lots of copies of the Butterfly's Wings CD and even managed an interview with the local newspaper. She and her extended family have already raised over £5,000 for Ali's Dream (well over Ellie and Glenn's target of £4,000), which will fund further research into childhood brain tumours.
Very sadly, Ellie slipped away on Valentine's Day 2010, forever now to be surrounded by hearts and flowers. Her family were all at her side in the children's hospice near her home. Ellie wanted her organs to be donated and, in particular, her heart, but unfortunately, because of her cancer this wasn't possible.
We lost Braden, in January 1995, less than a year after he was diagnosed with a brain stem tumour. For sometime before the diagnosis, we knew there was something wrong, but it was like hitting our heads against a brick wall.
"To all the truly brave children
Please help, there is so much that needs to be done to raise money and awareness.
Sue & Andy Webster, Braintree, Essex
The death of your child is the most devastating loss any parent can be called upon to face.
You not only lose your delight in their company but also your hope for the future. Watching them grow up, wondering what they will do with their lives, whether they will have children of their own. You may have other much-loved children but they cannot replace the one who has been taken away, nor can anything fill the emptiness that is left in your hearts and mind.
A part of your life can never be the same again.
Carly was 10 years old when she passed away from a brain tumour on the 21st January 2000.
She was an inspirational child, gentle, extremely loving, a child who showed wisdom beyond her years. She never complained despite the operations, treatment and pain she had to endure in her short life. Her glass was always half full and her prayers till the very end was always for others.
'Yesterday', we buried our little girl, but today we hope that charities like 'Ali's Dream' tomorrow, someone else's child will be cured from this terrible disease.
Julie and Paul Watson
Ethan Maxx Evan-Jones
In May 1997 all our dreams came true, our son Ethan Maxx was born.
But on the 11th May 2000, 2 weeks before Ethan's 3rd birthday, our dreams turned into the worst nightmare imaginable, Ethan was diagnosed with a PNET Brain Tumour. For the next 7 months we traveled a journey of disbelief, numbness and constant questions, the How's, ifs, when's but most of all the WHY'S. None of which could be answered.
Ethan taught us how to smile, love and be happy and gave us a lifetime of memories in his short life.
On the 6th December 2000 Ethan Maxx died in my arms.
He left behind a Mummy and Daddy and a little sister Paris Delenn, whom each night kisses his photograph and asks will Ethan come to play with me tonight.
We have our memories and that twinkling star in the sky to remind us of him, Our love for Ethan Maxx will continue to last to Infinity & Beyond.
Gail and Michael Evan-Jones
I'd been worried about our daughter Indianna for a couple of weeks; she had become wobbly, falling more than usual and tearful. I took her to my local GP but was assured nothing was wrong.
Saturday 14th June 2003 we were in the casualty department with our daughter less than a week after seeing our GP. Later that day we were told the awful news hat our wonderful little girl had a brain tumour, it was another 2 agonizing days before we were told it was terminal.
Mick and I would have gladly given up our lives just to stay with our precious little girl, but I was almost 37 weeks pregnant.
We resolved to do what ever we could, to spend every last precious moment with Indianna.
She was almost 5 years old and she was the very light of our lives, imagining life without her cuts us to the very core. She inspired us so much, she have love, kindness and affection so freely even at her most sickest. She had the heart and soul of an angel.
Her baby sister was born on 13th July 2003, 5 days before Indianna's 5th birthday. Indianna named her little sister Meg and kissed her and smiled a smile we will never forget.
Indianna continued with the radiotherapy which was the only treatment available to us, it took its toll on our little girl but we hoped it would give us as much time together as a family as possible. We brought our girls home on 7th August 2003, less than a week after her treatment had been completed. Indianna died in her Mummy and Daddy's arms, we tried to hold onto her but she left us on Sunday 10th August, Meg was only 4 weeks old.
She will never be forgotten, we have to learn to live without her being with us, she will forever exist in our hearts and dreams, eternally our angel with wings, watching over us and her sister Meg, who is our angel also, having saved her parents lives.
Mick and I wrote this poem which was read at Indianna's funeral it means a great deal to us and we would like to share our thoughts with other families who may sadly have had to face this terrible loss.
Kath, Mick and Meg Perry
Our beautiful, happy and healthy daughter died on February 19th 2004 age 8 years.
She had been in perfect health, with absolutely no symptoms until 15:30 the day before that.
We were on half term, and had had a lovely few days with friends in Cardiff, then had come home, and had family visiting, and other nice things planned for the rest of half term.
On the Wednesday afternoon we were having nice quiet time at home before visitors, when at 15:30 Ellen suddenly had a bad headache, and vomited, I let her sleep for 5 minutes, and then noticed she was twitching, and when I tried to wake her she was drowsy, and her eyes and voice were not normal.
The nightmare that followed involved excellent care from the London Ambulance Service, Ealing Hospital A&E, the Police, and Great Ormond Street. However nothing could save her.
Ellen had had a massive brain haemorrhage, from a very small tumour, in her brain stem. We were completely unaware she had this.
By Thursday lunchtime, we were told Ellen was brain dead. Our beloved, beautiful, happy, healthy child had gone. We went home, and the next part of the nightmare began.
Before that, I had a bath and saw it was 15:30. It had been just 24 hours, and we were back home, without our daughter.
Despite the kind loving attention and support of family and friends, the closeness of each other, and Jack our 9-year-old son, the house still feels different, and empty, like out hearts.
We are now involved with Ali's Dream, and hope we can help to prevent this cruel tragedy happening to others.
Marion and Roger King
Matthew Paul Denbow
On 29th July 2001 we lost our beloved son and brother, he was just 11½.
Matthew was an active boy who had no fear of danger and liked any active sport. Just a few weeks before he died he was playing cricket with his classmates, he struggled but he pushed himself to the end.
Matthew began having headaches in the rear of his head and was tripping and losing his balance for a short period before he was diagnosed with a Medulloblastoma Brain Tumour in November 2000.
He had surgery to remove the tumour and everything went well.
His treatment continued with arduous trips to and from London's Great Ormond Street Hospital and the Middlesex Hospital also in London where he received a full course of radiotherapy and began chemotherapy. As his treatment continued Matthew became weaker and needed a wheelchair for getting around. He continued going to Balfour Junior School in Chatham when he could so he was around all his friends, which were a big help in keeping his spirits strong.
Throughout his treatment we remained confident that he would make a full recovery as he was always so strong willed and full of determination but on July 16th 2001 that all changed. Our lives were destroyed as we were told that the cancer had returned and was now spread throughout his head and spine. He was given just a few short months to live but even that was not to be; he deteriorated so rapidly and just 13 days later he died at home in our arms.
Matthew has left an empty void in our lives and sadness like no other we have ever experienced. Although we all try it is very difficult to express the depth of our emotions in words.
Sandra, Paul & Graeme Denbow
Sam was born on 29th March 1998. A brother for Darren, aged 6, and Shani, aged 4. From a very young age he was always there with a ready smile and sense of humour that always made everyone laugh.
He was such a loving little boy and his arms were always open for a hug and a kiss. Sam was very family orientated, full of fun and mischief with the family members, but very shy with outsiders. You had to work hard to gain his affection, but it was well worth the effort! He was a very bright child, learning to ride his bike without stabilisers at age 3, and had a great brain for figures and puzzles and a love of books and reading. He had wisdom beyond his years that made him such great company even at a very young age.
September 2002 soon came along and Sam went off to school, finally settling in and going off with no tears by February of 2003! In June of 2003 I met my current partner, Martin, and we all went camping in August of that year. Sam had a sore eye and the doctor had given him some cream and he also had the runs. Throughout that autumn and winter I kept saying to Martin that Sam's appetite didn't seem the same to me since then. In December of 2003 I went along to the school to watch Sam in his nativity play and was quite worried when I saw him come into the hall. He had spent the previous two nights with his Dad and he looked very pale with big dark circles under his eyes. His Dad assured me that he had been going to bed on time. We thought he must just be feeling a little under the weather. A few days later Sam actually developed a black eye, but told me nothing had actually happened to his eye - no bump, no elbow -nothing! I mentioned it in school just in case there was a bit of bullying going on that he wasn't telling me about. Around a month later Sam was in the car with me and there was a low winter sun. He had his eyes screwed up and he turned to me and said he could see everything double. I told him it was only because his eyes were screwed up and thought nothing else of it.
Then in April of 2004 began the worst nightmare imaginable. Sam came home from school one day at the end of the month and mentioned a headache and said he was fed up seeing everything double all the time. Everything! All the time! And we weren't just talking a vague outline. We were talking a whole second object. I spoke to the school nurse straight away to find out what was the best route to go down - doctors or opticians - and she expressed her concern that Sam had a perfect eyesight test only 8/9 months previously, and she did not think it was normal for a child to develop a sight abnormality to that degree so quickly. Sam at this point had no sign whatsoever of a squint in either eye. I made an appointment for the GP the next day and saw a locum who gave Sam a fairly thorough check over and an eyesight test. I told him about Sam's black eye at Christmas and my concern that something had been dislodged by a bump. He concluded that there was nothing to worry about, and that it was probably a very slight squint and he would refer him to the eye hospital. I wasn't so sure - we were talking a very big double vision. Even more worrying when we got into the car to drive home Sam sat in the passenger seat. As he chatted to me, he looked right towards me, and his left eye turned right in towards his nose. At first I told him off because I thought he was doing it on purpose. Sam's teacher had mentioned that afternoon that his eye had turned in while he was staring at the carpet during the story. As soon as she spoke to him it shot back into place. She thought that maybe it had become a habit, because he had realised he could see double when he did it. But as we drove home it became apparent to me that Sam was definitely not doing this on purpose. By the time we reached home I was worried sick and Martin couldn't believe the squint. The other two kids kept asking Sam to look right just so they could see his eye go in. I was far from amused. How could someone's eye go wrong so quickly?
The next morning, after dropping Sam off at school and speaking to his teacher, I phoned the GP again, to tell him that Sam had developed a most alarming squint and it seemed to me to be getting worse by the hour. He told me it was nothing to worry about and he would fast-track his appointment at the clinic. It was Thursday.
By Tuesday of the following week, Andy picked up the children from me before I left for work at 7pm. I received a phone call later that evening at work to say that he was so shocked by the change in Sam's eye since he had last seen him that he was taking him to the A & E Department in Chester and he would keep me informed of what they said. He dropped the other two children off at my house and Martin looked after them until I got in at 12.15am. I had a phone call from Andy a few minutes later to say that they believed Sam had some sort of pressure at the back of the nerve that controlled his left eye and they were going to keep him in and send him down for an MRI scan in the morning. I could hear Sam crying in the background. He hated to stay away from home, and the poor little man was worried sick about what was wrong with him and what they would do.
The next morning Martin and I made our way to the Countess of Chester before Sam went down for a scan. They were doing various balance tests on Sam and asked me all about his childhood and any illnesses he had had. They seemed quite sure they would see some sort of bleed or clot on the brain because Sam showed no signs of any other problems at all.
We took him down to the scan room and then back to the ward. Half an hour later our entire world fell apart. My baby had a tumour in his brain stem, and I knew without them saying so - just from the looks on their faces - that I was going to lose my precious little boy. I couldn't speak, couldn't ask any questions, couldn't breathe - I felt so sick. How could this happen to my perfect baby - my little boy, who was always to full of beans - always running around - always laughing and giggling?
Sam adored Martin and his children and I had finally found my soul mate in life - why now when we were all so happy for once and he was enjoying his little life to the full. What kind of God is up there? Is there one?
Sam was put on a very high dose of steroids immediately and was sent home. They were sending his scan results through to Alder Hey and he would be called in there for a more in depth scan as soon as possible. We were told they can work miracles at Alder Hey. Oh please, God. Two days later Sam was in Alder Hey. He was in the scanner for an hour and a half and was so, so good. He lay perfectly still even though his skin was intensely itchy from the steroids.
When the scan was complete the doctor took us into a side room and told us that although Sam's tumour was in an awkward place it wasn't inaccessible and he was 95% certain that the team would go in and operate to remove as much as possible, following up with radio and chemotherapy. We had an appointment with the neurosurgeon for 10 days later to discuss the plan of action.
Imagine our horror, therefore, when we arrived at Alder Hey for that appointment only to be told by the neurosurgeon that he wasn't sure what we had been told but Sam's tumour was completely inoperable and untreatable with chemotherapy. Radiotherapy was only going to be minimally effective but it was our only hope of having more time with Sam. My life felt as if it had come to an end that day. How could I let my little boy go on to another place, so scared and all alone? All I wanted to do was to be able to go with him when his time came. There were so many others around to look after my other two babies, but Sam knew nobody in heaven and he was always such a shy little boy.
But we picked ourselves up and carried on to the next stage, which was a biopsy for Sam in Walton Hospital. This was just to confirm to the neurosurgeon that Sam's tumour was indeed a pontine glioblastoma multiform and not something else. Sam's tumour had strange lesions within it which the surgeon hadn't seen before within a glioma and they wanted to confirm it wasn't M.S. or anything different. Before Sam was even back from theatre the bad news came. It was a grade 4 glioblastoma, particularly aggressive, with cystic lesions and nobody worldwide had survived one. We were told no steps have been made forward at all in research for either cause or cure. Why? Why Sam?
We were told it was not thought to be genetic and therefore the other two children would not be offered a scan. Sam had been told after his second MRI scan that he would be going for an operation on his tumour, and he now asked me if that would not be happening. I explained that it wasn't possible for his tumour. The wisdom he showed was, once again, far beyond his years. He asked if it was because the tumour had tentacles a bit like the ones going out from your heart round your body, which were spreading out round his brain and if they tried to cut them out they would have to remove pieces of his brain which they couldn't do without killing him. He wanted to know what would happen to him now. It broke my heart and I couldn't ever have told by baby he was going to die. I told him they were going to try radiotherapy and try to shrink the tumour as small as they could, and he just nodded and smiled. Always so accepting!
After his biopsy Sam, in his inimitable style, refused to lie prone for 24 hours, preferring instead to carry on having fun in the toy room. He had to endure six weeks of very intensive radiotherapy and amazed the nurses at Clatterbridge Hospital. All the other little ones used to have to go in for a general anaesthetic or sedative every morning early before their radiotherapy, but Sam just climbed onto the table every day without all that.
Some days the mask with which his head was fastened down to the table cut into his little face and neck, due to all the swelling caused by the steroids. He never panicked, just asked us to do it quick and he would be OK. He lost all his hair on both sides of his head and he hated so much to catch sight of his little bloated body and patchy hair.
After the biopsy, when they had disturbed the tumour, Sam more or less lost the use of his left side very quickly. He had to go most places in a wheelchair. Sam was totally distraught that he couldn't ride his bike anymore. It used to be glued to his bum!
He had also been left handed but within several weeks, determined as ever, Sam had taught himself to write with his right hand - joined up no less. In the event, the radiotherapy only gave Sam an extra six weeks.
In the 5 months from diagnosis to his death we crammed so many holidays, days out, fun and laughter into that time. Starlight children's charity paid for us to take Sam to Euro Disney. He had a fantastic time, and was totally in awe of all the characters, really enjoying going round the park collecting their autographs.
Sam developed shingles in his face and eye while we were there. He never complained, except of itchiness, and occasional stabbing pains in his head. He was so brave that we never even realised it was shingles until we got home. We thought it was prickly heat.
The local paper launched a fundraising appeal for the whole family and Todd, his beagle puppy, to go to Centre Parcs and Black Rock Sands, Porthmadog. Sam travelled in style in a chauffeured Bentley lent by a generous local gentleman. The public were fantastic. Sam had a day out at Camelot, taken in a stretch limousine. So many happy memories!
Sam just kept going and going and never lost his sense of humour. He had so much fun all the time. While we were at Centre Parcs he started to be sick every day, and he was given anti-sickness drugs to take. For us, it was the heartbreaking reality that things were actually progressing and this was really going to take our son from us. When we got home Sam went to choose a new kitten he had been promised and for the next few weeks kept asking when we could go and bring him home.
When it came time for the children to return to school after the summer holidays Sam was really upset that he was going to have to stay at home bored. He decided he wanted to go into school as often as he felt able. He was so proud that he was able to write as fast as the other children with his right hand, and he so enjoyed the company of his school friends again. His electric wheelchair was the envy of all his pals. And the laughter flowed as he used the horn with his middle finger while reversing to make the same noise as a lorry does when reversing!
After a fortnight of going into school, Sam suddenly got quickly worse, and was quite violently sick at least a dozen times a day. The nurses had to come and put a syringe driver into his stomach through which he was administered anti sickness drugs, steroids and eventually a small amount of diamorphine.
Throughout all this Sam still laughed and joked and it was so very humbling to watch him doing his jigsaws, stopping to pick up his sick bowl and be sick, and then carry on with his jigsaw as if all this were perfectly normal. He unfailingly let the nurses stab him in the stomach with needles to change his driver and never moaned. He put up with endless worsening headaches and refused any further morphine. And my little one more or less lost his ability to speak. Where his little voice used to chatter non-stop he struggled now to make his slurred little voice understood. But even on the day before he died he had my typewriter and the laptop out and communicated with us, and still the jokes kept flowing.
He often struggled to breathe and had little panic attacks when this happened. On the morning of 24th September I called the Macmillan nurse to the house because Sam had been so ill during the night and I couldn't get even water to stay down. Having given him a shot of morphine in the leg they left him for the day and Sam slept the entire day. It was so unlike him that I called the nurse back out in the evening.
Sam was only waking to be sick and then going back to sleep! Even the fact that today was fetch the kitten day didn't rally him round. During that night, Sam slipped into a comatose state and we lost him at midday on 25th September.
To the end he was so strong and courageous, but this was the part that ripped the very hearts out of the rest of us. How were we going to carry on without our precious little soldier to keep us strong?
Although the nurse had told us in the morning that he would not respond to us any longer, as we gave Sam some oxygen and took the mask from his little face, he opened his big eyes and looked around at us all, knowing we were all still there with him. A huge part of me died with Sam that day, and he will never be forgotten by so many people.
It is our aim now, through all our remaining dark days here without him, to raise funds for research into brain tumours, so that the loss of our very own little angel will not be in vain.
So many questions remain unanswered. Was it something I did while I was carrying him, something I fed him, something I cleaned with, somehow my fault? And all the time the huge gaping hole left in our lives, and the feeling of panic. Where is my little boy now? Is somebody looking after him for me and is he alright or does he need me? The feelings you experience as a parent, and maybe more so as a Mum is one of total helplessness and failure that this is one time you cannot kiss it better, or help your baby to get better in any way, and all the time you are trying to enjoy every last minute of their little lives and make them happy, there is such a feeling of sadness and inevitability that you have to deal with and hide from them.
For me with Sam it almost felt like I lost him twice over - once when I lost the little boy he was, before he was ill, and I missed hearing him and watching him doing all the things he loved - and again when he died.
Just to stop other parents from going through these feelings and other little ones from suffering makes it all worthwhile. This is the reason we chose Ali's Dream as our charity for which to fundraise. We must find a cure.
Caroline Fynn – Sam's Appeal
On 16th January 1997, we had boy twins at 26 weeks weighing 2lb 1oz each. Twin 1 – Cameron and Twin 2 – Calvin. They fought so hard to stay alive despite being given very little hope by the medical team.
They finally came out of hospital on 25th April 1997. They were always behind in their milestones but that was minor to us. Christmas day that year Cameron was admitted to hospital again with a respiratory infection. Calvin followed on Boxing Day. We got out again on New Years Eve.
Cameron always struggled more than Calvin. He was always prone to chest infections and snored like a trooper till he had his tonsils out aged 7 years. Calvin was always just below average at achool (we thought that was brilliant given his start), Cameron always had a degree of special needs with autistic like symptoms but no specific diagnosis. In June 2004 Cameron had an EEG as he kept having little ‘pauses’ but nothing untoward was shown. Cameron always found new places and people difficult to cope with, but he was improving so much in 2005 that we booked a holiday in Florida (we never made it). We had some excellent family trips out and a week in Centre Parcs with two other families. Life was getting easier but his school work was slipping. We applied for a statement.
In May 2005, Cameron was sent home early from school with a cough. When we went to pick up Calvin, Cameron fell over a kerb and broke clean through both bones in his lower right arm. He stood up and turned to me and lifted his clearly broken arm and said “Mum, make it straight!” I called an ambulance. The pain did not seem to bother him, just the extra bend in his arm. He had it straightened and plastered under general anaesthetic. We then carried on as normal (Cameron insisted on getting on the trampoline the next day – plaster cast and all!)
Then in August Cameron had his assessment with the paediatric team and they were concerned. In six months he had not gained weight and his right arm was still not fully functioning. He was referred for physiotherapy and we finally got a specialist speech therapist for him who deals specifically with children with autism and aspergers. I had written loads of letters and complaints trying to get this help. Everything seemed to be falling into place for him at last.
Then he started being sick occasionally. On 14th October, I started keeping a record and he was sick every other day. On 25th October we went to the GP who referred us to hospital who said he had a virus. The sickness carried on and then he complained of some headaches but would be sick and then back to normal.
On the 8th of November we went back to hospital, he looked awful, grey and floppy. He regained his normal bounce after a few hours, but was admitted anyway. On 9th November 2005, he was given a CT scan. The news was dire – he had two masses in his brain. We were immediately sent to Addenbrooks Hopital and he was put on steroids. He remained our beautiful, happy, smiling boy. Nothing floored him. When we got upset he comforted us – he hated seeing people sad.
On 15th November the surgical team operated but they only managed to remove part of one tumour. We knew that was bad. Three days later we were discharged. He was so very happy to be home. It was wonderful and scary too. On Friday 25th November 2005, we were called back for the results. Cameron had a Grade 4 Glioblastoma and it was assumed the other one would be the same. His life expectancy was 2 months.
Cameron did a short course of Radiotherapy which he hated but it helped. On their birthday we took them to Disney in Paris along with their best friends. We had a great week but Cameron was in a wheelchair and on lots of drugs and he was deteriorating rapidly. It was so hard to see. He went down hill all through spring and summer but would not give in. We spent three months in a local hospice but then took him home where on 19 thSeptember 2006 our boy died. We were all together for which I am glad.
We miss him so much. His smile was unique. He gave the best hugs to all of us and we feel incomplete without him. I have been told I am very lucky to have had him for so long and I am lucky I got to say goodbye. Why do I feel so unlucky? Again, we miss him, we are lopsided.
Warren and I keep going for Calvin, who has been incredible through all of this and has had to grow up fast. With our friends, we have raised some money. We would like to do more. The pain is too huge. If we can make a cure one tiny step nearer we must help.
Personally I would like to stop anyone ever going to this black place I am in. I can never imagine being happy again.
Our lives were turned upside down in January 2001 when our wonderful Loving brother Peter was diagnosed with a rare brain cancer.
After his operation we were told he had 2 to 5 months to live, of course you just cannot believe them and start to research only to find in the end there is nothing or nobody out there to help you.
Peter was so very brave and positive until he died 6 months later on June 25th 2001 aged 53. Our lives will never be the same again without him.
He loved children, sadly he had lost his first child Rebbecca at just 3 weeks old, he would say to lose your child is the most devastating thing to happen to you.
So we comfort ourselves not just with our wonderful memories but in the knowledge that he is our guardian angel out there looking after Ali and all the other children while we strive to find a cure for this monster that attacks without reason.
So come on support Ali's Dream so they can do more research to help save future generations from suffering the pain and sadness.