School fun days...

School...Willie never reached the dizzy heights of looking forward to school ..the best he got to, was a simmering resignation that for some reason - unbeknown to him - he had to attend ...regularly.

Zoe and David really wanted him to go to mainstream school and he was already familiar with St Marks as 'Rara' his older sister had been there for a couple of years. Willies favourite teacher before he even began was Mr Warrender...he had heard him playing the guitar in assembly (watching Rara) - when he was only 2.and became his no 1 fan. Playing guitar usually got you on Willie's 'most accepted' list.

I was impressed he could recall such a long name  :) Sadly His son Harry Warrender was not a guitar player and despite infinite attempts by Harry to make friends with Willlie, he never gelled with him. Poor Harry was sad about that, but no amount of cajoling would entice Willie to return the open hand of friendship.

He flouted the uniform rules and wore light grey elasticated jogging bottoms. These were more comfortable round his waist and the head teacher eventually caved in to allowing a deviant to the smart and strict uniform at St Marks primary school in Cold Ash. Occaisionally his navy granddad style jumper made an appearance. This was definitely his favourite as it had more pockets for his daily treasure.

Children are excellent at accepting each other and having a high level of tolerance. Willie only extended that policy to a chosen few. There was no rhyme or reason ...sometimes a spark of devilment in a character that would amuse him, helped. I can still hear the irritation in his voice if someone tried to join in with an activity. "JaaaDe Noooo" he would say determined not to share the play dough.

Play dough was one of the few activities he relished, water play, sand pits and mud digging also in his top 5. Reading, Writing, listening, Maths, drawing, painting "Noooooo" in fact Willie didn't ever learn to read , maybe he knew it was irrelevant.

Phonic books were often discarded by posting them through a gap in the fence, or trying to bury them in a freshly dug hole, as one teacher recalls. Carol Collis has many fond memories of his thwarted attempts to hide any book given to him. She remembers being at his memorial service and realizing he probably knew he wouldn't be needing that skill in his lifetime.

 He had absolutely no interest in reading. The only book he loved was Crispin the pig. It was a story about a pig who had so many toys but no friends. One day Crispin started playing in a big cardboard box that he imagined was a spaceship or other exciting things and through this imaginative play he met lots of friends. Willie loved the story with a passion, and we read it regularly. I often wondered if this was a reflection of how he felt himself , sadly no 'normal' friendships were ever made...possibly because he always had a carer in tow. he did also prefer the companionship of older children than his peers and in particular adults.

Everyday school curricula like sitting on the mat first thing were the hardest times to get him to conform. I resorted sometimes to whispering in his ear "If you are quiet you will hear the teacher f***. This made him giggle which did get us a look from the teacher but actually kept  him quiet for a few minutes.

The dressing up corner was a firm favourite, and playing shops or 'cooking' on the toy cooker. As his teaching assistant in reception it was my job remit to help engage Willie in each subject. His teachers job shared, Mrs Zealey I believe set his targets and goals. Mrs Zealey was known to be strict by nature, a little scary (mostly the parents were scared) but I have to confess she was brilliant with Willie and his education. Mrs Collis was softer spoken and not scary at all. I believe he liked them equally and did want to please them both. it was a challenging time for all the teachers to provide the right level of education for Willie, and at the same time not being too soft inspite of his illness. I believe the whole school adapted brilliantly and on reflection I felt it was an important and rewarding time for him.

He loved Mrs Marshall one of the other assistants as he thought she was a bit 'silly and lots of fun". After I left he did have many other one to one teaching assistants that I know have fond memories of him and their time together. Memories of them 'enjoying?' and 'exasperating' at the same time lol. Each and everyone adapted to his needs and understood his need to enjoy school within the educational system. They succeeded on the whole, as it was a mammoth task to cajole Willie to stay inside - even on the coldest wettest day..convincing the teachers with his persuasive arguments that there was every good reason to dig in the mud, despite the huge storm going on. They found themselves questioning their own rationale and almost caved in. Willie held the key to their hearts and they all allowed him a certain amount of bending the rules, often flouting them outrageously.

Tania Edwards his year 2 teacher, gave an incredible comic and fond performance of Willie at his memorial service, stripping off at the front to reveal the hidden drill tucked in the top of her trousers. He definitely made his mark at the school.

He would get grumpy if one of his least favourite classmates tried to help him or join in an activity. "Goooo away..Matthew" - he knew everyone's name he had an excellent memory capacity, and only had to be told once. I can't remember the names of all those in his year, and the rest of the school, so I'm making them up - eeek - if Willie was still here he would be able to reel off each and everyone of the 160?  pupils in the school at that time.

He bought out the best in his peers, they looked out for him, called out his name after he lost his sight, so as to identify themselves, and generally accepted him for himself. They tried to make him giggle, and wanted to befriend him in the playground. they took great care not to injure him in anyway and so treaded carefully around him.

 Zoe has given a trophy of 'kindness' in memory of Willie to be presented to a pupil that has been particularly caring during the school year. The first year it was presented to his whole class, for all their love and support to Willie through the years. They were amazing.

PE was almost an impossible task trying to cajole him to run in a straight line from one post to another. These kind of activities were not in line with meandering around the field finding mud to dig and sticks to pick up ...he usually ran straight back towards the classroom moaning lol.

He did enjoy ball games and sometimes the apparatus could be fun....one of my most memorable days was the sports day that Willie took part in. I stood with Zoe the other side of the rope held by two parents at the finish line. All the other little ones aged 6 ran as fast as they could wind sailing by their ears, giggling and falling over as they threw themselves across the finish line.

Willie, with all the stamina and speed he could muster walked/jogged towards me and his mum, unperturbed by the fact he was a long way behind his competitors. The others long since finished, turned and watched, the whole of the school - pupils, parents and staff cheering him on. All united in compassion and willing him to keep going "Willie Willie" they all chanted. Zoe and Rheanna watched on with pride. His teaching assistant within 'catching distance' should he trip and fall.

This short chubby little boy, in baggy navy shorts and sky blue t-shirt, blond curls swaying, headed home to the finish with the biggest cheekiest grin on his face ...over the finish line and into my arms as I swept him up and twirled him round hugging him tight...to the cheers of the crowd...I placed him back on the floor and he proudly accepted his sticker, from the smiling parent.

 A huge achievement, and a tremendous effort - recognised by the onlookers...probably not a dry eye on the field. Zoe was so amazed and proud of her brave boy, even though she was unable to pick him up herself she beamed from ear to ear as I swung him in the air. Willie was buoyant with excitement and relished his victory.

 

 

Such glee on his face as he was determined to get to the finish line.

(Watched closely by Mrs Ingram his T/A at the time)

 

 

 

A victory smile and a winning hug with mummy.

 

 

Without a doubt Willie was a winner that day. There were other special days and many happy memories..some I will continue in a later blog. For now I will leave you with the image of that little man running like he had never ran before, and hope you can hear the crowds as loudly as I can.



A mothers worry...

Radiotherapy was fairly intense, not so much the time the treatment took but the daily routine to get to the hospital early and on time.  Willie wasn't as bothered by it as other treatments.He seemed resigned to visiting the same place each day. He was put out via his line (a tube already put in intravenously especially to administer the general anesthetic and any other medications) - The radiation lasted just minutes so he was back out in no time and as there was very little anesthetic needed so it  didn't have the usual side effects. He bounced back in the first few treatments, raring to go to find a new park to explore, as time went on he got more tired but still was relatively ok compared to other more painful episodes such as the chemotherapy.

The radiotherapy did halt the growth of the tumour for quite a while, the damage to his brain could not be measured accurately, but it was a forgone conclusion that many healthy brain cells would have been destroyed by the intensive radio waves.

Writing this I confess that I realise that I was so busy being involved I probably didn't consider exactly what Zoe was going through. Zoe always just got on with it...practically sorting out the details, making sure Rheanna was loved and catered for, ensuring Willie was enjoying every moment he could and being there to support and care for him through the hospital visits. It was always her aim to make each and every one a good experience...trying to pack in activities either side of the dreaded treatments.

As a mum she always put Willie above her own needs, never feeling sorry for herself even if she was in pain from her crumbling spine. I did notice her irritable bowel syndrome really flared up during treatment times. No wonder, the stress and worry of your young 4 year old being put under general anaesthetic on a daily basis, his face covered with a strong plastic see through mask that was bolted to a framework so he couldn't move an inch, would be enough to stress anyone. Zoe still has the mask, not as a gruesome reminder, but it was moulded around his face, so a rather weird  reminder of him in 3D.

The nurses as always were brilliant and would ensure the whole process went smoothly, so Willie could be back to his busy day as soon as possible. We always had to wait ten minutes afterwards in case of any dire effects. I didn't go everyday, the au pair sometimes went, David his dad stepped in once or twice in between busy work schedules, sometimes friends would take a turn. again it made me ponder why Willie was born into a family where the single mum was disabled, and therefore needed 24 hour assistance to take Willie anywhere, to lift him if necessary and to push the pushchair. As Willie got more exhausted as the treatment built up over the weeks, he needed the pushchair more and more. Zoe was also getting weary, away from the routine and comfort of home. As lovely as the accommodation was and the staff were amazing - as we all know - there is no place like home.

Willie was still petite as his body was not producing growth hormones naturally. They did try to inject him on a daily basis with hormones, but it was so painful and traumatic they soon gave up. Therefore Willie remained the height of a 4 year old until he was granted his wings. The steroids made him fill 'outwards' a little bit after Radiotherapy. Actually this never bothered Willie, and for those caring for him it made life easier as you could  carry him, he still fitted in his favourite swings and could be kept safe in a car seat.

Looking back now I am surprised Zoe kept so calm, I'm very proud of her, at how Willies well being overrode her anxieties and deep concerns. It was a huge decision for David and Zoe to make - whether or not Willie should undergo such invasive treatment, but it was also the simplest - as it was his only chance of survival beyond the age of 4.

How hard and heartbreaking - the level of normality ended the day he was diagnosed. Instead of worrying about a tummy bug...has he got a temperature?...To.. is he turning blue?...is he in shock? does he need emergency injection?. For me I adjusted to those levels for practical purposes and became comfortable living the moment rather than fearing the moment. But Zoe was his mum. What an emotional and scary ride, with the knowledge that one day your worst nightmare was likely to happen, ending in disaster and heartbreak.

An example of how quickly life could change I remember one Sunday morning I went to pick Rheanna up to take her to Church. She was chomping at the bit as she loved Sunday school. Also that morning Willie was unwell which meant virtual silence in the house. This bouncy 8 year old was ready for action. Rheanna had grown up most of her life in the shadow of her little brothers illness. I'm not sure how much she would have grasped the enormity of all he endured. She loved him with a passion and children have a great way of keeping life simple in their minds.

A loving and energetic young lady she accepted her plight as big sister to an ill sibling and embraced life to the full at any opportunity. I am sure it was her coping mechanism, I'm so glad she found a way, that helped her to continue to have an enjoyable childhood. Sibling rivalry for attention is often rife in any household but to compete with a baby brother that demanded all his parents attention all of the time must have been pretty hard to deal with.

Thankfully Rheanna loved being with people - not shy of strangers - always up for a good time either outside running through fields and climbing trees or making arts and crafts in a quiet kitchen. I'm so glad God made her so sociable as she was a breeze to look after. She once invited herself back to someone's house she happened to meet in the park. Zoe and Jenny consequently became firm friends...and eventually Rheanna bagged the sleepover she craved at their house, with Jennys two lively sons.

So this particular Sunday as I knocked on the door and it was flung open, a vibrant splash of colour swept past me..."I'm just going to pop upstairs to say hi to Willie Rheanna, I won't be a minute, can you wait here for me."

 Her big hazel eyes looked slightly disappointed, but she skipped on the spot to keep herself amused. Zoe had text me earlier that Willie wasn't too well and I know he loved it if I popped  in to give him a kiss and say hello. I ran quickly up the stairs, walked into the bedroom and glanced down at this little body sleeping soundly on top of the quilt. Dressed still in his pj's he looked peaceful. As I turned to leave  I took a deep breath as I realised he actually looked 'dead' ....trying to retain a sense of calm as Zoe was standing next to me, I gently touched his small arm. No response. I got closer to see if he was breathing, and was relieved that there was evidence of life. However the colour of his skin was a blue-grey, and I tried to make him stir but to no avail.

I mentioned to Zoe that he seemed very unwell, and rather than transport him to hospital (normal for Willie rather than to doctors first) in a car seat, and make him sit upright, it would perhaps be better to phone an ambulance. I looked at Zoe and realised she was unwell to, looking dazed and tired from lack of sleep, she hadn't noticed the change in pallor of his skin. I told her to stay with him whilst I phoned for the ambulance, I ran back downstairs and dialled 999. Zoe and Willie were whizzed off to Oxford within minutes....I took Rheanna to Church. As always trying to continue life for this vulnerable little girl whilst trauma prevailed in the background. Rheanna was so used to ambulances and hospitals it didn't phase her that her family had just screeched out of their cul de sac at 50 miles an hour.

I felt very sick, I wondered if the poor little mite was going to make it. I called David to let him know, was late for Church (nothing new there) and prayed like crazy from my heart. I asked several at Glendale to pray as they were all familiar with Willie as it was 'his church' to.

Zoe told me they rushed him in to A and E ignoring her, as a team of at least 8 experts attended to him, trying everything to get him stable. It turned out he had diabetes and had gone into a coma. Minutes later would have been too late. It was experiences like these that made me realise again that it wasn't Willies time to go, so many near misses and yet he bounced right back. I shuddered thinking about what if I had just rushed off excitedly with Rheanna. God was in control as always. He didn't give Willie this tumour - these things happen in our crazy fallen world. But evidently The Lord was walking closely with him. Still this awesome little boy had much to share with us.

With new drugs to add to the existing collection of 3 x daily life saving medication, and an addition of Hypostop in his emergency bag,  Willie continued with his imaginary phone calls, looking cute with those big hazel eyes and a mop of blond hair...apart from when I cut it for him in the bath....oops another misdemeanor that I had to reconcile with Zoe. I cut the angelic blond curls turning a cherub into a skinhead. Not my best day.

This was their life. Taking one day at a time, never knowing what the next hour will bring, but ensuring that the hour was filled with fun, laughter and love. There was always a huge abundance of Love all of the time. Amen to that x

Ronald McDonald

McDonalds may not be your favourite restaurant...especially after Jamie Oliver's recent reports. I love McD's...although I hardly eat their food as I am perpetually dieting. I do have many fond memories of doing drive through's with Willie.

It was definitely on Zoe's taboo list of places to eat. I did risk her wrath on a few occasions...especially after Willie lost his sight. Trying to fill his day with different experiences..a simple 'drive through' could be a big adventure. Describing people in their cars waiting in the queue (obviously with a licence to exaggerate fully - the bald man with big ears really was picking his nose..)  talking to the server, ordering the 'naughty chips' and then holding them in his hands - provoked many giggles. I recall that he only ever ate one or two fries...I'm not sure he even liked them ....but our 'naughty antics' were enough to amuse Willie for at least half an hour - from anticipation to handing back the bag of cold fries as he got out of the car. Worth every penny. Willie was an honest little man so I knew I had better confess to his mum before I left...as he would have mentioned it within minutes and I would have been in even bigger trouble lol.

But this is not the reason I love Macca D's ...it's their charity box for Ronald McDonald charities I spot on my visits ...these bring back fond memories of the Ronald McDonald accommodation at the John Radcliffe hospital. It's good to see their charity in action. For those who have experienced young people in hospital, you would know how important it is to be able to stay close by your child throughout their treatment. Often a camp bed is provided next to the ward bed for the patient. But can you imagine moving into a sparse ward with little room for hospital essentials - let alone a big suitcase of your clothes for the long weeks ahead.

Ronald McDonald Housing provided a modern small one bedroom studio flat with a communal kitchen. A safe haven away from the hub bub and busyness of the ward. A place to be still, pray, catch up on sleep...cry. I imagine families discussed in private their worries and concerns, talking to their other children about normal every day activities, catching up on their homework and just 'being' with them.

 Rheanna didn't opt to stay that often. There were others that could keep her life ticking over at home. But  this space would be used for quiet moments with her mum. Zoe enjoyed having a kitchen she could cook food she loved and so they would eat together up on the top floor, enjoying the vast Views over the surrounding villages and Oxford countryside.

Willie often joined them for a healthy lunch and special time together. His excitement always enhanced by watching the huge cranes in close proximity doing what cranes do best...still to this day I feel sick at the thought of sitting in that little box at the very top several hundred feet up...manoeuvring a huge concrete block weighing a few tonnes. How did it not fall over. How did the man go to the toilet? We enjoyed discussing the possibilities.

Rheanna would often read or draw...as not so interested in building sites. But she would be excited for Willie (for a couple of minutes) as he pointed out several on the landscape.

It's only when journeying with young people that are seriously ill that you are enlightened to the many facilities around to help out families in their time of distress. There were a few charitable concerns that helped Zoe out in different capacities at different times.

Clic Sargeant is a charity that amongst other things provides houses local to the hospitals for stays of a few days to a few weeks. This is a facility that is home from home. It is serviced with cleaners and lovely ladies to help you out if you need support. Sadly supply outweighs demand as it is a costly business but more sad is that the need is high. The house Zoe could stay in for a few weeks whilst Willie underwent radiotherapy was adjacent to the John Radcliffe hospital in a leafy suburb estate.

With four bedrooms and large living accommodation it was perfect for relaxation and easy access to the daily trip to the radiotherapy hospital a couple of miles down the road. Willie soon settled in to his new home, and enjoyed exploring the toy box and videos on offer. His favourites also travelled with him in the bag, so Rosie and Jim rollerblading and Bob the Builder were the usual choices, rather than watching anything new.

Staying in this lovely accomodation saved an early morning dash from Newbury (which is over half an hours drive away) for a 9 o'clock start, 5 days a week for 6 long weeks. These charitable concerns work tirelessly to raise money and the money is well spent. Also years of experience of other families suffering - maybe living a couple of hundred miles away from a specialist hospital - had prompted these charities to set up.

The Helen House children's hospice in Oxford was started by Sister Frances Dominica after her experience with the family of a young girl called Helen. Helen needed 24 hour care and Sister Francis realised the family's plight and so began work on opening a hospice to meet that need. Praise God that something positive came about through Helen and so many hundreds of families have benefited over the years since November 1982 when the first children's hospice in the world opened. In 2004 Douglas House was added to the facility for 16-25 year olds.

One of the weeks, Zoe stayed at Helen house.I had the privilege of visiting this awesome place. It has eight children's bedrooms to keep a homely feel - each child has 24 hour care - personalised and tailored to their individual needs. The emphasis is about making the most of life whatever the circumstances. Many other children's hospices have been founded since - including Naomi House near Winchester - another amazing place. My heart breaks though knowing how much they are in demand. We have no idea the huge scale of families managing with little respite. A week in Helen  House was like gold dust.

When we went to look round - meticulous care was given to find out Willies exact requirements regarding diet and physical needs - most importantly his favourite pastimes. They showed us around the comfortable house with a huge kitchen, arts and crafts room in which Rheanna nearly pee'd her pants with excitement - it was stocked lavishly with incredible bits and pieces of art accessories, felt, sparkly bits...everything a good arts and craft girl ever dreamed of. We were allowed to make a few pictures whilst we were there..just to try it out!.

They have an incredible music room filled with numerous instruments, some I had never seen before. A sensory room..a must for these places to stimulate those severely disabled. Willie enjoyed some of the clever apparatus and lights...all sorts of clever inventions..in a room full of padding to enjoy safely. The gardens were stunning and safe for Willie to walk around. Swings for 'wheelchairs' and larger 'baby swings' that Willie loved most. A huge sandpit and small trikes to ride. The garden was a firm favourite for sure. Watching Willie exploring this beautiful space I realised it was going to be a real Blessing to them as they went through the tough treatment ahead. Getting him out of the sandpit before dark was going to be a different issue altogether.

The staff were friendly and welcoming. They invited us to stay for lunch which we enjoyed, and found out more about the history of this awesome place. It costs hundreds of thousands a year, money raised tirelessly by the charities but worth every penny for those able to have respite when needed.

Naomi House was also an intricate part of Willies journey, but more about that in a later blog.

These places that are provided free of charge are invaluable to those heartbroken and anxiously waiting and watching their young children undergo major surgery and difficult treatment. It enables families to be kept together during the most traumatic times in their lives. I praise God for each and everyone of these provisions. Thankfully in abundance now throughout the world.

So next time you spot the Ronald McDonald charity box ...give generously knowing it is making a difference to so many. Visit the charity shops with pride - knowing every little helps. I hope you have not had to visit  or will never have to see the inside of any one of these incredible buildings, but I hope I have given you a glimpse of how incredibly precious they are. Praise God indeed.

How many of you have taken your first born to the doctors for their first jab? You know it's for their own good, prevention is better than cure...but still your stomach churns..this little being that trusts you completely....who has only felt love and hugs since they were born is now going to have a sharp needle prick in their leg. Whilst you hold them. It's possibly the hardest moment since you first held them in your arms, and made a silent heartfelt promise that you would never let any harm come to them.

Racked with guilt, tears welling up in your eyes you turn away as the nurse jabs them. Your baby may shriek, cry out a little or just give you that questioning look of why? ...

Whatever your experiences I'm sure it never got easier with the future jabs and subsequent children.

Willies chemotherapy was possibly the hardest task I ever had to assist with. Looking back it's no
wonder Zoe found it so painful to witness. During the operations he had reservoirs implanted just beneath the skull strategically placed into the cysts that had formed. These were to be used to drain the fluid from the cysts and administer bleomycin a chemotherapy drug.

Willie had to go up to The Radcliffe Infirmary once a week to have chemo. It took about 2-3 minutes to inject the bleomycin into each of the two reservoirs so the doctors took the decision to not put him under a general but just get it over with quickly. The trauma and risk of a general anasthetic would have been almost as bad. Willie hated the gas to put him out and the cannula they had to insert into his hand every time and afterwards the recovery time would have been even longer.

I am sure the doctors considered all things when deciding the best way forward but I guess it didn't make it any easier for them when they had to administer the treatment. It was imperative that Willie did not move a millimetre whist they inserted the needle. It was a precision procedure. I admire the dedication and skill of these incredible men. They also have feelings and it must be a two edged sword knowing you are doing your best to beat the tumour yet witnessing a young child in utmost distress. Their bedside manner remained a constant. Professional yet tender, efficient yet empathetic.

So we have a squirming 3 year old and a doctor insisting he does not move - at all. It could be a matter of life and death if the needle went in the wrong place. The first time Willie had no idea what was coming...and went into the treatment room like a lamb to the slaughter. I think he got suspicious when I tucked his little arm under mine and pulled him tight towards me then as directed by the medical team, I put my other arm across his sweet face and held his head in my hand pressing it into my shoulder.

He got suspicious and started to wriggle just as the nurse firmly grasped his legs ....he tried to move but was in a such a tight hold he could only scream out in fear and frustration. I felt for the nurses to, I guess they never really 'got used to' seeing young children in distress. They kept a smile on their faces in quiet empathy.

Doctor MacCauley carefully injected the chemotherapy into the reservoirs. He screamed incessantly, it sounded like he was in excruciating pain (Willie not the doctor).  He must have felt the needle and bleomycin going into the cyst. Poor Willie, this definitely was a traumatic time for him and for his mum witnessing it all from a chair. Sadly as always Zoe was unable to hold him due to her bad spine, so had to watch helpless from the sideline.

Zoe insisted he laid down on a bed in the ward once it was over.. He was tearful for an hour or so. After a few hours we took him home. I wasn't sure who was the most traumatised - Willie for the agony or Zoe breaking her heart watching him suffer. As usual I found food a real comfort, and enjoyed a good canteen cooked lunch. At times such as these I have always wondered why I don't smoke..it is far more expected to puff on a cigarette than gulp down some huge meal, more expected and probably more accepted.

The following week Zoe asked if they could be ready 'to go' the minute we walked through the door as she knew Willie would remember. He certainly did and started screaming "noooo' as we headed towards the treatment room. Another few minutes of horrendous screaming...I felt so guilty holding him so tight knowing how much he hated it, but in true Willie fashion he never held it against me, not even for a minute. He trusted me and the doctors and nurses..even at three years old he understood somehow it was for his good.

The third visit I suggested Zoe stayed at home, she wasn't keen as she felt she should be there for him
when undergoing  something so important and serious. I convinced her he would be ok, and I trundled off to Oxford - Willie loved his mum best of all without a doubt but like all children made less fuss and coped better when mum wasn't around. It also gave Zoe a 'recharge her batteries' time. (As I'm writing this I realise I was indeed very bossy and controlling..oops..sorry Zoe x)

The half hour journey was a mix of listening to Cat Stevens..'father,son', spotting roadworks, electric generators, combine harvesters, transporter lorrys...(bonus if carrying a tractor)..and general silly chit chat. This time we also made up a little rhyme to sing whilst David administered the drug. Willie seemed quite happy with my efforts and was giggling at the thought of singing it to his doctor.

Willie remained stoic and brave as we waited in the ward playroom. Distracted by toys, the toy kitchen was another favourite as we could invent disgusting dinners to take into the treatment room
for the doctor to enjoy! Hamburger with bogey sauce, an all time favourite. It all changed when the nurse came and nodded her head...Willie knew instantly what was coming and decided even singing our new song wasn't enough to see him through.

Picking him up whilst he struggled and squirmed wasn't easy and I tried to console him and reassure him as I carried the reluctant patient into the room where Dr MacCauley was waiting.

I raised my voice above the tears reminding Willie we had a surprise for  the doctor. He momentarily went quiet as I began...."David is my doctor short and fat, he trumps like this and he trumps like that..' The disgruntled look on the doc's face made me realise the choice of words were probably far too disrespectful...even if Willie did start to giggle...which I hadn't thought to clearly about. He was meant to be very still - oops. The doctor waited patiently for the giggles to stop, looked as though he wanted to stick the needle into me instead...and then got on with it. I know it wasn't politically correct, but as I'm short and fat I thought I had license to sing those words..( Dr David actually was not that short and definitely not fat)

 More screaming for the duration of  the treatment...but as we left he actually said goodbye to the doctor and nurse with a smile and we returned to the playroom . We had to wait for a. Minimum of 30 minutes to ensure there were no adverse effects before we could leave the hospital.

Willie bounced back quickly and singing our little ditty (out of earshot of the staff) we trotted off down the corridor and back home to his anxious mum. I cannot remember exactly how many
treatments he received but I know it did reduce the cysts and thus delayed the radiotherapy option.

They were holding off as long as they could for this as it would destroy brain cells for future learning. Whatever Willie knew and understood at the time of treatment - he would remain like that forever. So the more he learnt and knew before radiotherapy began the better chance he had of 'growing up'.

Sadly the chemotherapy only did a temporary job and the time came when an unenviable decision had to be made by Willie's parents in conjunction with the surgical team's expertise. Although the tumour had probably more influence than either of these two parties - as it definitely had a mind of its own and continued to grow in complication and stature.  The time to start radiotherapy came sooner than anticipated and Willie was admitted to have a general anaesthetic to make a hard plastic mask to cover his whole face. This would protect the areas unaffected by the tumour whilst the penetrating rays destroyed the growing and deadly cysts, sadly along with good brain cells.

Willie was now 4 years old...it was the start of a long few weeks.

The little wise man...

Following the miracle operation, Willie underwent radiotherapy.

The huge doses of radiation to the brain to curb the cysts cost Willie millions of brain cells. Once the treatment had concluded they called him in for an assessment. It was to involve spending at least an hour with the child psychologist completing various tests/questions on a very long form.

Zoe was not happy at all as she felt Willie wouldn't co-operate easily and it would be too stressful to sit there under scrutiny for an hour. To be honest I didn't hold out much hope but understood that it could be vital research for those children affected in the future when big decisions had to be made.

I persuaded Zoe to let me take him along with Dhelia their current au pair, as Willie was more likely to co-operate in the absence of his mum. We set off as a slightly apprehensive team of three!

Dhelia was a lovely au pair with older children she was providing for, back in the Phillipines...she had been with the family for a few months and adored Willie and Rheanna. A lovely Christian lady she had learnt how to 'be 'with Willie and was very much a part of 'Willies world'. (She was caught  once by Zoe, throwing wet paper towels onto the ceiling..I wasn't there, but like all of you who knew this little rascal - you can imagine the hearty giggles as each one splatted...)

Together we tried to sell this trip to Willie as an adventure, although I believe Willlie possibly dreaded every hospital visit as circumstances could change so dramatically and so swiftly. He did humour us though and came along quite happily.

This visit however was not going to involve needles, chemo, masks, or any pain at all. A huge relief to him I'm sure when he left without being pricked and prodded.

The female psychologist came into the waiting room and took Willie by the hand. I was concerned about him going off on his own, as I had promised Zoe I would ensure he was not afraid at any point. He let smiling and virtually skipping into the distance...the kind lady reassuring me she would bring him straight back at any time if he got upset. apparently it would have been too distracting with me there to..

It was over an hour later when they came back to get me, and I followed the two of them into a small room. It had been a surprise and a relief that Willie appeared contented and happy, enthusiastically pulling me by the hand to 'show me' his handiwork.

The psychologist showed me the enormous amount of questions/tests they had got through, apparently Willie had co-operated and sat still for the whole hour...the lady must have been gifted I concluded in the art of bogey talk. But weirdly she appeared very sensible. A lovely soft spoken lady she also look relieved.

We left on top of the world...lovely day, tasty lunch out for three, and task completed effectively 'sans' trauma..result!

I was driving back down the A34 towards Newbury pondering on just how successful against all odds that had been. Delhia was as pleasantly surprised as I was. She was sitting in the back to keep Willie company.

Willie was smiling in his car seat. I glanced at him in the mirror, feeling like a very proud 'mummy'...
smiling broadly I caught his eye.."Thank you Willie, thank you sooo much for being such a well behaved boy and doing those tests so brilliantly, thank you - you were amazing.."

To which he replied quite simply.."Don't thank me, Thank God - just think what He has done for us."

I nearly crashed the car!

4 years old, apparently special needs, couldn't read his own name - yet had the wisdom of Solomon..the mind of a man far beyond his 4 years....I reflected ..'did Willie actually meet Jesus when the doctors almost lost him?, had he 'died and come back to life.?' ...how else, where else? ...Willie would not have been interested in such a conversation...how would a 4 year old understand the concept of Jesus's ultimate sacrifice?...I realised at that moment that Willie had a very deep and real faith...one that was going to uphold him through the next few years...and  into eternity when the time came.

 Awesome..I still shiver in awe as I recall those words spoken with such clarity and authority..

Yes Willie Foster-Horton, you had so much to teach me...and that was just the beginning.

A very long night...

It's very hard to convey the complexity of Willies tumour and subsequent operations. It involved tubes, drains, chemotherapy, radiotherapy, and removing bits of tumour by careful dexterity and open brain surgery....six operations in a few months...and Willie continued to bounce back...the chemotherapy they injected into the cysts produced by the tumour - was possibly the most barbaric and painful for this brave soldier to endure. No one will ever know the level of pain Willie was in. Did he ever have a day without a twinge..what level was 'normal' and what constituted severe or excruciating pain. No one as far as we know had survived this long with a tumour this large and active.

Although it wasn't a cancerous tumour..ie it would not spread to other parts of his body..it was forever active in his brain..as we discovered one long dark night.

It was discovered soon after the first big operation that he had lost the use of his left eye, he had been compensating so well it had gone unnoticed. For a while he had ok vision in his right eye. But as the cyst behind this eye filled with fluid it squished the eye vessel.  One day he woke up blind. He was
only 3 years old. How do you explain to someone so young about 'blindness'. Zoe did her best as Willie adapted to not being able to see. She told me how Willie had just stopped walking one day in the middle of the shopping centre..he sat down with a heavy sigh, pleading..."Will somebody just turn the lights back on." Poor Zoe, what do you answer to that.

Willie was scheduled to have a 'small op' one Monday Evening to try and regain the sight in his right
eye. They had been waiting for some special tubing from America. I hadn't been present at the
hospital for all the operations as often it was easier for us to have Rheanna. Zoe always had an au pair in situ.(and for all the au pairs following this...I will be blogging about you very special people very soon)...but it was nice for Rheanna to be distracted by chaos in our very busy household.

 Rheanna was just a year younger than my third son and fitted into our family very easily as she could be a bit of a Tom boy. She was always a delight to look after, she thrived on taboo cereal and chocolate..oops! Our 4 sons soon adapted to having a surrogate sister and still today she is very much a part of our family. Rheanna never questioned when Willie and her mum were coming home, and often would get upset at leaving us when they did. This is not a reflection on Zoe, possibly more to do with chocolate :( - Also as Willie was often fragile..and Zoe was so tired after a long emotional stay in hospital, Rheanna had to be calm and quiet..both of which did not come naturally to this bouncy young lady. This tumour affected them all in different ways.

It seemed odd to be driving Zoe and Willie up to Oxford on a Monday evening, but as the specialist team were so busy, they were fitting in an extra operation at the end of the day. As usual word was out for the prayer warriors to be vigilant, and I prayed for Willie before he went under the anaesthetic.  Knowing I was covered in prayer as I journeyed with them was essential for my confidence, knowing The Lord was with us. The surgeons were going in as a matter of urgency to try and repair the damaged eye vessel. It was predicted to be a fairly quick operation for Willie..only 3 hours.

After saying goodbye to Willie..well cuddling him whilst they put him under... Willie by now had become very suspicious and even though we tried to fool him, he sensed where he was and began to get hysterical as we entered the anesthetists room. He knew he would wake up in pain bless him. They were always swift to act and whilst I held him in my arms they put the gas mask over his little face and within seconds he would go limp. Zoe made sure no one mentioned the word operation beforehand as he would fret like crazy for days if he knew one was imminent.

I felt for Zoe so much, not only is it the worse feeling in the world watching your child about to undergo surgery, but because she could not pick Willie up with her bad back, she had to be content to watch and then give him a little kiss just before they wheeled him through the swing doors.

Zoe and I walked slowly back through the maze of corridors...back to the parents waiting room on the ward. This room was quite familiar by now. Occasionally we walked to get a cup of tea....I had normal tea...Zoe had her usual big mug, certain strength with a big blob of honey..which was one of Willies favourites to. It's funny how God can bring people together that are quite opposite in many ways...yet bind them together in a deep love and concern for a sick child. We talked about all sorts, I learnt about humous, organic food and non battery chickens...Zoe learnt to never eat in my kitchen lol.

We did laugh a lot together..I believe God gave us a similar warped sense of humour which was often used to lighten what otherwise may have been an impossible moment. You can't be worried and negative whilst waiting for news...it makes every second feel like an hour. Instead you think of positive things, tell poignant stories of Willie and Rheanna's escapades...giggle at the funny or embarrassing moments...a little bit of God talk...(well it had to be done)..and prayer..for Willie, Rheanna, Zoe and David. I always prayed that God's Will be done for Willie as He knew the bigger picture..and the future Willlie had in store. To pray he lived May not have been the wisest prayer if the brain was damaged so much he would spend the rest of his life in a vegetative state.

The time ticked by...11pm..11.10pm..11.20pm..we waited expectantly looking towards the door - willing it to be opened. For every extra minute passed the expected three hour mark, the more chance there had been complications. Zoe started to get fidgety at 12...at 1am the door finally opened..I hadn't realised until then how I had been gripping the edge of my seat...my heart was pounding...a nurse announced that Willie was still in theatre and there had been a big bleed...they were still working on him and as soon as Dr MacCauley was finished he would be over to explain the situation.

As the nurse left my whole being started shaking and I watched Zoe for a reaction...amazingly she did not go hysterical, but looked numb. I hugged her and prayed for her son like never before. I felt sick as we sat more subdued and waited and waited...eventually after watching the hands of the clock ticking painfully slowly..the tick tock getting louder by every breath stopping minute.  David MacCauley arrived, looking exhausted and very concerned, it was nearly 4am.

How do doctors do this job, so many amazing life saving operations and yet in impossible surgical complexities you have to sit and explain to the parents news they have been dreading. David MacCauley was a humble man, and had a lovely peaceful way of talking with a delightful soft Irish accent (I am rubbish with accents..he could have been Scottish lol.) His genuine sadness and sense of  'helplessness' was conveyed as he talked us through a 4 hour major brain bleed. He spent a few minutes describing Willies tumour...it was far bigger than anything seen before - worldwide. The intricate world wide doctors web had unearthed no suggestions as to how to treat it. For any complicated illness there was a central computer hub where all the top surgeons visited often to try and help their fellow men around the world. Experts in the craniopharyngioma field were baffled by the size and nature of this tumour. Images went round the world several times over in the hope someone somewhere could identify with the enormity of it and give guidelines on future treatments.

The top medics were aghast. No-one, not one (and believe me they always like to suggest something - David explained to us) made a comment. It was an entirely new entity in the world of brain tumours behaviour. He was demonstrating with his hands whirling around, saying it's got arms shooting off this way and that entangling themselves around blood vessels and veins..producing cysts filling with fluid, causing untold damage on their journey, ...after he had left, me and Zoe looked at each other and both said at the same time..he's got an alien in his brain.

The doctor explained how they almost gave up trying - he even called in extra help from the talented Peter Richards his counterpart. In his humble fashion he accredited the stop of bleeding to Peter. Between them they had finally stopped the flow. Willie was still under sedation, on a life support system, he was to be transferred over to the John Radcliffe by ambulance into intensive care.

He went on gently..."We have no idea yet whether Willie will pull through, he could be dead already, but the life support will keep his body functioning. We were within a second from losing him altogether, so I would not be surprised if the bleeding has started up again. Even if Willie remains stable after we turn off the life support in the morning, the swelling to the brain has been so severe for
4 hours, that Willie will be in a vegetative state for the rest of his life."

David was working in Scotland at the time, so we had had to call him in the early hours of the morning whilst the doctor was present. I cannot tell you how incredible Dr MacCauley was..he was in no rush to go...he was kind and empathetic ...passionate yet professional...no trace of him working 24/7 on complex operations without a wink of sleep. I spoke to Willies dad first, explaining as gently as I could what had gone wrong. He was devastated and felt helpless being so far away. What had become almost routine in their lives, suddenly had turned into the worst possible scenario, their worst fears coming true :( - The doctor then explained the position...quietly and patiently repeating himself as David (Willies dad) absorbed the news.

He then jumped on the next available plane to be there when or if Willie woke up.

Dr MacCauley offered for us to go and say goodbye in the operating theatre before he was transferred. He left us with a nurse to accompany us on the long trek through dimly lit, very long corridors retracing our earlier footsteps in silence.

If ever there has been a moment of sheer admiration of a mothers pure love for her child I saw it in Zoe that night...as mentioned previously Zoe suffers from sciatica, sometimes extreme pain owing to a crumbling spine, held together with nuts and bolts, stress can make it worse.The walk to say goodbye to her son was one of sheer grit and determination. With a walking stick as an aid she limped at a fast rate, upright in stature, obviously in serious pain, taking the biggest strides  her failing body allowed her to take, her face set towards the goal...the longest walk ...I did offer a wheelchair to help her, but no - a mothers love had no place for luxuries such as wheelchairs, this was a walk for her young boy, maybe the last one she would do. I followed closely behind, wondering how Zoe would cope with what was ahead, with the realisation he may already be brain dead. I was in awe she could walk one step let alone the hundreds it took to get there.

Finally after what seemed an age we went down in a very cranky lift, and were shown into a very sterile room...a big operating theatre, machines and gadgets everywhere. To one side, silently on an operating table lay a little angel. His head wrapped carefully in a bandage, dressed in a white hospital gown and covered with white cotton blanket. Dim spotlights on him, machines wired up to him to keep him alive, several nurses surrounding the trolley bed looking sad and subdued. Willie looked beautiful, with a little smile on his very peaceful face, definitely like the images of angels we have grown up with.

I sensed a peace that passed all understanding as I entered that room. There was an overwhelming feeling that there were choirs of angels filling that space, Willie had a 'glow' all around
him.  I truly hoped with all my heart Zoe would feel it to. It was surreal. Zoe sat on a chair kindly offered by a nurse, and gently held his small hand, limp in hers. She bent forward very carefully and kissed him gently on his cheek. No tears, but smiling as she rose from the chair and walked slowly towards the door. I bent and kissed this cherub to, then followed Zoe out.

We stood still, moved by what we had just experienced. Peacefully Zoe said -"If Willie does have to leave us, I would accept him going tonight, did you feel that in there?"

"Yes, without a doubt there was a presence filling the whole room, I'm sure you could even sense the angels singing".

Zoe bravely walked back at a much slower pace, more contented than I would ever have believed in such sad circumstances, but God is Gracious to us all and I believed that moment was an enlightening moment for Zoe, an acceptance of what is meant to be, will be and an incredible wisdom that if this was Willies time to go, then surely with that tangible feeling of love and a taste of Heaven we had just experienced - he would be ok.

We were shown back to his room on the ward where there were 2 beds. It was a small private room due to the nature of his surgery. It was 530am. I texted anyone I knew would be getting up that early to start the prayer chain off for this new day, this new situation.For Zoe, Rheanna, David and the grandparents...the thought of what might be, was too big to contemplate. I kept thinking a doctor wouldn't tell a parent their child might already be dead unless there was a good chance it was true.

God's Grace continued to pour into our room as we got into bed. We even had a giggle at the doctors graphic description of the alien, cleverly animated with his hands. we chatted for a while as I wondered how on earth Zoe would get any sleep - but Contrary to every rule in the book of sleepness nights, Zoe was soon sleeping  like a baby ..and I.. snoring like a pig...

The knocking at the door woke us with a start, it was 9am. I jumped up and opened the door...there clean shaven, showered and in a smart shirt and tie was the amazing Dr MacCauley...who just 4 hours earlier had been looking tired, unshaven and in a surgeons gown. What a transformation. I on the other hand was still unshaven, unshowered, wearing the same bodily odour scented clothes I had slept in....not my finest moment.

With a huge grin on his face he announced "I've just been to the John Radcliffe to see Willie (note to self - he IS superman..did he actually sleep?)  and although we had anticipated slowly reducing the life support to bring him round, he was trying to rip all the tubes out! We have had to increase the sedation in order that he doesnt move for a few more hours...Praise God. Tumour nil..Willie Foster Horton 1... The doctor was in shock and disbelief...even more so when 24 hours later he had to 'answer' one of those special phone calls..'der der der David MacCauley?..'

I had just witnessed a miracle first hand ..Willie unscathed by the massive bleed, came out of that. Operation better than he went in... HE COULD SEE AGAIN.

Hallelujah Hallelujah...HALLELUJAH...this was not Willies time after all..he still had much to teach us.

How could I forget 'plectrums'...

Thank you Julia for the reminder  of plectrums - guitar plectrums a regular visitor to Willies pockets. He would take it out and show you on his opened hand...inviting you to admire it with the same enthusiasm he felt. I am surprised I had forgotten such a favourite pocket treasure, just shows how much of the small detail goes missing from your mind. It's great that so many of you are reminding me by your own memoires...thank you and keep them coming.

The plectrum was very much connected to his deep love of all things instrumental - especially the guitar. I have many pictures in my mind of him strumming away to some music on his small guitar, or watching and listening to anyone who could play a good tune. Again jumping ahead, his jamming sessions with a guy called Jason from Church, both of them sitting on his bed, guitars in hand strumming a made up tune - pure Heaven watching them.

Music is accessible to those who are totally blind, and Willie proved this over and over as he 'felt' his way round the strings of his half size guitar. He never had a lesson, he was never taught the notes but by sense, hearing and feeling he could play beautiful music. Those last weeks felt like a pre-Heaven programme designed by a God for a very special and fulfilling journey into eternity. I continue to Praise God  for His awesome provision throughout Willies entire life, and especially the last few weeks.

When Willie was four years old my eldest son Simon had written 'The wee and pooh song' for GCSE music. The teacher wasn't overly impressed, but it was a real favourite of Willies. The perfect lyrics. Shortly after one of the many operations he endured, he was sitting on a child's green plastic garden chair, on our decking listening to Simon singing 'the song - eventually renamed 'Willies song'. Willie had his hair shaved from the front to halfway across his head. The recent scar still red with thirty odd stitches intact - ran from one ear over the top of his scalp and down to the other ear. As Simon played and paused at appropriate words - in full animation, Willie literally almost laughed his head off. Zoe took a video on her phone (sadly phones in those days didn't have the quality of today) but replaying that video was heartwarming watching him throwing his head backwards and forwards guffawing loudly, saying "again, again.." As soon as the song ended.

One of my most profound discoveries of God's provision was 'buskers'. Buskers came in all shapes and sizes..and they came in abundance. My first experience of this overwhelming gift to Willie began in Oxford City centre. In the early days of recovery in between several operations that followed the
big one, we would venture from the Radcliffe Infirmary into the City - about 15-20 mins walk on short legs (mine). Willie would be in his pushchair for our adventure whilst Zoe caught up on much needed sleep or to have some quality time with Rheanna if she was visiting.

Often we would call in to the big Catholic Church almost adjacent to the hospital. It was always open and warm...we ventured in whispering as people knelt and prayed at the pews..maybe one or two people dotted around. As I had a dear Catholic friend I was familiar with lighting candles and praying for others.

Willie would get out of the pushchair and we would take a candle and place it on the metal tray. We would post the donation money in the box and then careful light it. We prayed for his mum, dad and Rheanna. We prayed for his tumour to get better, and that he wouldn't have pain. Recalling these precious moments I have tears streaming down my face and an intense desire to be there once again in that beautiful huge building with stain glass windows, cherubs, and statues of Jesus Christ. Those moments were indeed  treasured moments. Those that knew Willies inability to be interested in kneeling and keeping still would have watched in awe.

Although Willie was used to me praying...we often prayed to Jesus for a busker to be performing on the way to the shops...as well as the big ones before an operation. I never got heavy with the religious side, mostly because Willie didn't tolerate heavy and serious subjects, that didn't involve the odd mention of a drill. Yet in this peaceful place ..he was happy to stop and light the candles, pausing to pray. He was quiet and reflective praying to Jesus for those he loved. His faith was increasing as his operations increased. I will write the next blog about the operation that went horribly wrong...and when I believe Willie met Jesus face to face. That was when I believe his personal faith journey truly began.

We would leave the candles burning as we continued on our way, quietly respecting others deep in prayer. Onto the beautiful city centre with its old architecture buildings, the old style blending happily with the new. Quaint shops next to huge department stores, street traders in abundance. Pedestrianised areas allowed people to mill about easily. Some evidently rushing in their lunch hour dressed in 'office attire', middle aged daughters happily shopping with their elderly mothers heading to one of the many coffee shops, tourists With their little guide book and camera at the ready, students on bikes parking them alongside the other 50 or so in one of the many designated places. So many people, and us...young boy with brain tumour, crazy lady weaving him in and out of the crowds until we found 'the busker'.

And we always found one much to Willies delight. It was not important as to what instrument he was playing ( I'm fairly certain they were all male) or what genre of songs he sang. It was the busker experience itself Willie loved. We would stop as close as we could depending on the crowds gathered around. As people wandered off we would move in until we had front  row status. Willie would watch and listen in awe. Sometimes they had unusual instruments like a selection of African wooden pipes or a homemade instrument - but mostly his favourites -  a keyboard or guitar.

 We would watch for an hour at least, often Willies enthusiastic clapping and beaming smile enticed the performer over for a chat -.Willie would have lots of questions about the instruments and was
delighted when the busker handed him an instrument to join in. The joy of Buskers - if you know one or are indeed one yourself be assured that for many who walk on by - there are so many touched by your music. Long live Buskers! One day we were entertained for so long we went and bought the busker a McDonalds meal...to show our appreciation (Think that day I had no cash for Willie to throw into the cap..so used my card to pay for for dinner for him instead lol)

After a ten minute warning - we would reluctantly leave and head back to the hospital...Willie ringing on his imaginary phone 'da,da,da  ( this was a mix between da and der but punchy like der. Der. Der.as he 'dialled the number' )
"Jesus" he said clearly and of course in my best Jesus voice I replied.."Yes Willie?" ..."Thank you so much for sending the busker" he said sweetly. "That's ok Willie, I'm glad you enjoyed him."

I can honestly say every time, yes every time we prayed for one, wherever we were...we would meet one. In Oxford or in Newbury...sometimes Reading...EVERY time. Since Wille got his wings I think I have only come across 2 or 3 at the most over the past few years... I am more than convinced God provided them, sometimes I reflected they may have been angels in disguise. But most certainly a huge Blessing from above. Amen to that!