Alfie's Journey

Alfies Story

Our Alfie, aged 6, has been lovingly refered to as 'Alfie Bear' since he was just six months old, and became obsessed with a musical teddy with the same name.

Alfie is a beautiful soul, and always has a big smile for everyone that he meets. He is very musical, and enjoys playing the drums and guitar, as well as singing at the top of his voice. When asked what he wants to be when he grows up, Alfie replies "I want to be a rock star."

When Alfie was not rocking away on his guitar, he loved pretending to be a Fire Fighter. One of his favourite characters was Fireman Sam and he would often dress up in his costume and pretend to squirt everyone with his pretend hose.

Alfie is the baby of our family, he has two older brothers, Tyronne and Ryan aged 14 and 10. Alfie is the spitting image of his oldest brother Tyronne. He is very close to his big brothers and loves playing games with them.

In July 2012, Alfie was assessed at the Child Development Centre after concerns were raised about his speech and language and communication development. It was first thought that Alfie could have Autism Spectrum Disorder (ASD).

However after a two day assessment, it was determined that Alfie did not have ASD, although he did show difficulties with his social interaction and communication skills, both of which would be closely monitored along with Speech and Language Therapy.

Alfie started Reception year at the local primary school in September 2012. He loved his new teacher 'Mr Archer' and was a popular member of the class.  Alfie's speech was improving, however he still displayed communication problems, and had to have everything explained to him more than once before he could fully understand. Alfie started having a difficult sleep routine, he would wake up screaming early hours of the morning and not go back to sleep. This meant that he would be extremely tired during the day.

The disturbed sleep was not normal for Alfie, and in April 2013, we met with his paediatrician, who advised us to contact sleep solutions. While in our meeting with the paediatrician, she picked up on Alfie's unusual eye contact. Alfie had recently started staring sideways when looking at people, and as his eye test had shown perfect results, we had no idea why. Once again Alfie was refered for further assessment.

By the end of June 2013, Alfie was falling asleep at school and at home, which we initially put down to the lack of sleep at night time. However this very quickly became worse, Alfie started being very clumsy and wanted to be carried everywhere as he was too tired to walk. In the space of a week, Alfie was dribbling, slurring his speech, unsteady on his feet and could not coördinate his actions, such as eating (fork to mouth) and putting pen to paper and shaking when he needed the toilet.

We took Alfie to the GP who thought a lot of it was due to tiredness, and suspected Alfie could have a condition called Dyspraxia. The GP refered Alfie back to his paediatrician. The next two days, we could not settle, and the school were also concerned about Alfie, we looked into Dyspraxia, and discovered it was a common disorder affecting motor coördination and could also affect speech. But no where could we find any cases that had come on as quickly as Alfie's, nothing about it felt right, so we rang his paediatrician.

However the next day, on the 12th July 2013, we got a call from school asking us to come and collect Alfie and take him to A&E. Alfie had just had a seizure at school and was weak down one side of his body. The fear we felt receiving that call was indescribable. We rushed up to the school, and was met by Alfie's teacher, the headteacher and the lovely receptionist Fiona. Everyone was extremely concerned about our little boy.

Alfie seemed dazed and just sat in the car staring into space, it was heartbreaking. We arrived at A&E around lunchtime. The receptionist took one look at Alfie and got him straight in to a room with a bed, she told us that a Doctor would be down to see him in a few minutes. Alfie was admitted on to the children's ward. We told the Doctor all about Alfie's symptoms, and you could see one side of his face appeared drooped. The Doctor asked Alfie to walk and noticed how he was very unbalanced and dribbling. His speech was also slurred. Alfie was examined and had blood work done.

By 8.30pm, Alfie was extremely tired and as we were waiting in the playroom, it was hard for Alfie to settle. At 8.50pm, Alfie was discharged from hospital, the Doctor said he would need to come back in for an MRI Scan, but until then he believed he was well enough to go home.

By the 15th July 2013, Alfie had got progressively worse. We took him back to the ward and begged that an MRI be done immediately. An hour later, Alfie was on his way down for an MRI. He was very groggy afterwards, but still managed to ask for a bag of salt and vinegar crisps and an ice-cream....thats our Alfie!

While sat with Alfie, Dr Bindu came in to speak to us. The look on her face told us that it was not good news. That was the day our whole world came crashing down, the day we were told our precious little boy had a brain tumour.

Alfie was given Dexamethasone (steroids to relieve any swelling and pressure to the brain caused by the tumour) and he had to be blue lighted to Oxford hospital immediately. We remember him being excited about going in a real 'Nee-Narr' which he likes to call any vehicle with a blue light.

The next day in Oxford, Alfie wanted to go and play in the play room, and was chatting to all the nurses. Despite being extremely unbalanced and very ill, Alfie continued to smile, laugh and play. He was soon taken down for another MRI scan, and at around 10.30am, we was met by two Consultants and a Neurosurgeon who delivered the news that our little Alfie bear had an inoperable and incurable tumour of the brainstem, known as Diffuse Intrinsic Pontine Glioma (DIPG).

We were told to enjoy our time with Alfie, as he had anything from a few weeks up to a few months left with us. However they did not know our Alfie, not like we did. Our Alfie is a little fighter, and whats more he smiles while he does it!

Our family came straight to the hospital when they heard the news, telling our two older boys was the hardest. Alfie just led in his bed and smiled at everyone, with no idea how seriously ill he was.

The next day, Alfie had a biopsy which later confirmed the tumour was DIPG. After the biopsy, his heart rate was very low, so they kept him monitored on the ward for a few days. Oxford arranged for us to stay in Ronald McDonald home while Alfie was on the ward, so we could be close to Alfie. The support and care Alfie and us, have received from John Radcliffe hospital, and the Consultant and nurses on Disney Ward at NGH has been amazing.

Alfie instantly took a shine to his Oxford consultant Dr Shaun Wilson, and is always asking when we can see 'Shaun' again.

A few days after the biopsy we were allowed to take Alfie home. He loved being back with his two older brothers, and enjoyed a short visit to his reception class so he could see all his friends and teachers, especially Mr Archer.

Alfie started hypo-fractioned radiotherapy in August, he went in to have his mask moulded, and led very still while they were moulding it. Alfie actually loved his mask, comparing it to Spidermans. We was concerned that he would need to be sedated for the treatment, however Alfie surprised us all when he just led their and let them do the treatments. We stayed in Clic Court for the first week, which is a house near the hospital run by Clic Sargent. By the end of the radiotherapy, Alfie would be rushing to get in there and see what he called the transformers machine. Not once did he move or complain while he was having the treatment, and he would always have a smile for the radiographers, especially Dawn.

On the 28th August 2013, Alfie completed his radiotherapy. He was so proud when he received a certificate and a gift from the staff for being such a superstar.

We are so proud of how Alfie handled his treatment, he continues to amaze us with the strength and bravery that he shows everyday. Alfie's symptoms practically disappeared after his radiation and so we started planning his Christening and 6th birthday party.

Alfie was Christened in front of family and friends, and it was such a beautiful day. Alfie looked so handsome in his white suit, and made everyone laugh throughout the day, even taking a bow at the font. After the christening, we had a party for him and his teachers and friends from school attended, as well as other friends and neighbours.

Two of his favourite characters attended as well as a magician, and Alfie enjoyed playing with his brothers, cousins and all his friends. Seeing Alfie so happy just smiling and playing made it the best day it could have possibly been.

Alfie was soon well enough to go back to school and start year 1. This was an emotional day, as it is something we never thought would be possible in July. Alfie started going to school for three mornings a week, and really enjoyed being back with his friends. Some days he had appointments or was too tired to go, but when he did go, he loved it.

The support both Alfie and us as a family have received from family and friends, work, school and the local community has overwhelmed us. We have also received a huge support from some amazing charities. Through them we have had fun days out where we can forget for a while and just watch our children laugh and play. We have also made new friends for life and met some truly inspiring children along the way.

Alfie had an amazing Christmas with family and friends, he performed in his school christmas concert. Alfie stood up with his class and sang and danced to two songs, which he had learnt off by heart. He got to go on a train ride with Santa on christmas eve with local charity 'Alfe's Cause' and their charity families. We spent christmas eve and day at his Pops house with his Uncle's and Auntie's and all his cousins. We then had a second christmas at our house, and a second christmas dinner with his Nana and Grandad.

After Christmas Alfie enjoyed a magical four-day break to Euro Disney, organised by Make-A-Wish. Alfie loved meeting all his favourite characters and going on the rides. The Disney hotel also organised a surprise visit from Mickey and Minnie. We have all made memories that we will cherish forever.

On January 22nd, Alfie had another MRI scan and the results were 'remarkable'. The scan showed that the tumour was slightly smaller after the radiation. Alfie's consultant was pleased with his progress, and the fact that his symptoms had not returned.

Unfortunately by the start of March 2014, Alfie started experiencing problems with his eyes, this was shortly followed by wobbling when walking and slurring of his words. We took Alfie straight back to NGH where they preformed a CT Scan.

We were told that Alfie has had a small bleed, bleeding within the tumour. We then went back to John Radcliffe where they took Alfie down for another MRI scan. A few days later we were told the heart breaking news that the tumour has grown and is progressing again.

Alfie is having some of his brain tissue tested for a type of mutation, if it is positive then he will be eligible for a clinical trial. In the meantime he is having a chemotherapy drug called Temozolomide every day for five days in a twenty-eight day cycle.

Alfie completed his first week of chemotherapy, and has coped very well with it. He has been very tired recently and has experienced some sickness, but generally he is doing well. He continues to take steroids which makes him very hungry, this can be a problem when it comes to taking his Chemo as he is not allowed to eat for one hour before and two hours after, this is like torture for Alfie.

We all continue to pray for a miracle and never give up hope. One thing we do know is that our little Alfie bear is a fighter. We are so proud of our little hero and the courage he has shown. A smile from Alfie is like light in the darkness and we couldn't be prouder of our beautiful boy.

Mummy and Daddy and your big brothers, love you so much Alfie bear, to the moon and stars and to infinity and beyond!

A true inspiration to us all!

 

Update May 2014

Alfie's tissue sample tested negative, so unfortunately he was not eligible for the clinical trial. Alfie continued with his next course of Chemotherapy, but did not cope well the second time around. Alfie was very sick and had several headaches and could no longer use his right arm or hand.

On Saturday the 26th April at 3.30am, Alfie awoke with a headache and sickness. We took Alfie to Northants hospital as he was very drowsy, and having to be physically woken up for a drink of water. Alfie ended up sleeping all day on Saturday, only waking up for 2 minutes at a time.

Alfie did not eat or go to the toilet, and he barely spoke, even when he did speak we could not understand him. This was extremely frightening.

The next day after being on a drip all night, Alfie woke up properly. He could not walk unaided and his speech had become very slurred, however he sat up and ate breakfast. This was such a relief to us. We had never been happier to see our little boy eating his cereal. We even got a big smile.

Alfie's blood tests had ruled out any infection so he was later taken down for a CT Scan. Sunday afternoon, Alfie's Consultant Dr Bindu came in to give us the scan results. It was devastatingly the news we had dreaded. The scan showed an increased pressure on the brain, caused by the tumour progression.

A part of us already knew the results, but having it confirmed was heart breaking. Our Alfie had five amazing months after Radiotherapy, and coped extremely well with his first course of palliative chemotherapy, but by March the tumour began waking up and he had stopped having the chemo, as it had began making him sick.

On Sunday, we was told the devastating news that nothing more can be done for the tumour now. Alfie is on an increased dose of steroids to help relieve some of the pressure, and we have brought our Alfie Bear home temporarily, while his symptoms are stable. His amazing Consultants are helping us to care for Alfie and manage any symptoms that he has.

Since his steroids have been increased, Alfie began speaking more clearly, and once again he is giving us his beautiful smiles and plenty of laughs. He has had a lot of visits this week from friends and family. He has also had a few hours out, doing things that he loves.

Alfie can no longer walk unaided, and his eye sight is not as good as it was. He also gets worn out very easy so he can't have long visits. We now space Alfie's visits out so that he has plenty of rest. He just enjoys cuddling up to us and his brothers watching his favourite dvds.

Alfie's bravery continues to amaze us. Even now he is laughing and smiling, except these days it takes more effort for him.

We smile because Alfie does. We love our little boys strength xx

 

Update June 2014

 

Sadly by the end of May, we saw a steady deterioration in Alfie's condition. His breathing had become a struggle and he was generally weak. This lead to our beautiful Alfie loosing the ability to swallow and to talk.

On the 1st of June, we took Alfie to Northants hospital where sadly his condition quickly deteriorated. On the 02nd June at 1.15 in the afternoon, our brave Alfie bear sadly passed away with Mummy and Daddy by his side.

Our Alfie bravely fought until the bitter end, a true inspiration to us all. Alfie is now free of DIPG and has earned his angel wings. We are incredibly proud of the strength and courage that our beautiful Alfie showed throughout his journey. He will always be our hero and his huge smile and beautiful spirit will live on in all our hearts. We and Alfie’s amazing big brothers Tyronne and Ryan, as well as all our extended family are completely devastated. The house feels empty but our hearts are full with love and pride for our little boy who brought so much love and laughter to our lives. Alfie Bear will always be remembered as the bravest little boy with the biggest smile. 

When we were told Alfie did not have long left with us, we decided to donate his brain tumour to medical research after he earned his wings, in the hope that it would help drive forward research and make a difference to future children. Generally parents in the UK are not asked about donating their childs brain tumour. How do you ask a parent who has been told their childs Cancer is terminal to do something that has no life benefit to their own child?

We only found out it was an option after reading some American articles, about parents who have donated their children's DIPG tumours. We also read up on the importance of tumour/tissue donations for research.

Although donating Alfie's brain was an incredibly hard decision and not one any parent should even have to think about, we take some comfort in knowing that a part of our brave little boy is still here helping others.

This is our Alfie Bear's legacy.

 

 

 

Mummy and Daddy, Tyronne and Ryan with Alfie on his christening day

    Our Family

 

Our Brave Alfie Bear 

Alfie Bear Costume