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.