Looking back to that first week, it's a blur of activity and a roller coaster of emotion. Willie had a brain tumour the size of a quater pounder about eye level - the average craniopharyngioma was the size of a pea. The nature of these tumours is to produce cysts that randomly appear in any part of the brain causing indescribable pain, sickness and in Willies case his vessels to his eyes were being squished to the point he was losing his eye sight.
I got the distinct feeling that the talented and experienced surgeons were baffled not only by the discovery of such a huge and complex tumour but the fact Willie was still alive
With it in situ.
Zoe had constantly taken her ever screaming son to the local surgery and when she arrived worried - traumatised by the constant sudden shrieking as if he was in intolerable pain - the screaming stopped and the local GP was greeted by that most wonderful of angelic smiles. Zoe would leave feeling she had been labelled yet again with 'neurotic mother' on his records.
It was when finally the tumour caused him to go limp and vomit incessantly that she took him to accident and emergency in Reading. They had been on holiday when it happened. By the time they reached the hospital Willie had bounced back a little and was a bit more perky. Zoe refused to take him home - her instinct all along had been of an underlying cause - a scary one at that - and this time was going to play the 'neurotic mother' card and insisted they checked him over more thoroughly - the doctor was trying to reassure her and send her home when the sweet smiling Willie vomited all over his office.
Apparently that's how you get an MRI scan! Zoe said they were gone for a while and on their return showed Zoe and David into a small room with a couple of comfortable chairs a small coffee table ...and a box of tissues.
As a mother there was a double whammy to this indescribable news...a devastating pain that must have ripped through her whole body - but a relief that at last she was relabelled From neurotic to ? What do you call a mum that has just received the
devastating blow that her beautiful son has a huge brain tumour? I believe a sense of
relief that finally someone believed her that her son was critically ill and shock, fear and
sadness that her son was critically ill.
They had transferred him directly to the Radcliffe Infirmary in Oxford where leading experts in this field resided. Dr David McAuley headed up the team immediately assigned to this phenomenal case. It was decided they would open his skull and go into the brain treading incredibly carefully and teeny bit by teeny bit remove as much of the tumour as was physically possible without any unnecessary damage or death. It was a mammoth and intricate job for any talented surgeon and I know David and Zoe will be eternally grateful for the expertise and optimism of David McAuley and his incredible team.
I guess they thought if Willie could survive such a huge tumour and still say hello with the smile of an angel then he deserved every chance of life - and they were ready to do everything in their knowledge and power to make that happen.
It was 2 weeks before Willies 3rd birthday and I remember praying that not only would Willie survive the imminent operation but that he would sit up and see his 3 candles on his birthday cake and be able to blow them out.
The week was a long one for his parents and family...in the morning the eight hour starve the boy - only water to be given..orders were issued so they could operate later that day...how hard was that for any 2 year old - how do you explain that one away? Willie didn't like the constant attention and blood tests etc necessary - they tried to put the cream on his hand ready for the general anaesthetic but that alone made him scream incessantly - he was aware something worse was coming and fought the nurses all the way.
Zoe impressed me so much with her calmness and quiet determination to make this as easy as she could for her son. I never saw an ounce of self pity, it was never about her as a mum in agony but always and forever it was about Willie. Her resolve from day one was to ensure he enjoyed every possible minute that he was here on earth and I believe she achieved that during his first visit to Oxford and right up to when he got his wings. A mothers dedication goes beyond the anxiety and fear of what might be..and focuses on the 'now' ...today...what can she do this moment to make her precious child as happy as he can be within the constraints and limits of a serious life threatening illness.
After a few hours of starvation they would come and deliver the news that the intensive care bed had gone to an emergency case. Willie would be transferred to ICU at John Radcliffe main hospital immediately post operation. So when the bed was taken the op was cancelled immediately. It was a devastating blow..building yourself up for the awful moment of saying goodbye to then having to wait indefinitely for another time to restarve your child and wait again...and again...and again. Each day it was planned and then cancelled.
It was a surreal time for me..getting acquainted with the family - meeting grandparents aunties and friends. Zoe was the mainstay at the hospital never leaving Willies side - there were parent quarters where she would sleep and eat food she had bought in when David was there to take over. It was hard as David had been away in Germany frequently so Willie was inevitably closer to his mum and just wanted Zoe. But Zoe had to be persuaded to go and recharge her batteries ready for the next shift.
David paced up and down not knowing what to do with himself - Zoe sat and played with Willie...the visitors coming and chatting to him, reading books and playing with 'power tools - Bob the builder' style. They had an excellent playroom equipped with loads of toys and activities...and wonderful 'play nurses' that Willie adored as they to adored him.
When the operation had been cancelled David, his mum and stepdad went out to lunch and invited me...Zoe reluctantly agreed to come out for some fresh air so wrapping Willie up and putting him in a pushchair we all trooped off into Oxford City centre.
When you go into a situation as big as this on a God's behalf you have to have a team praying on your behalf back home. Mainly because you are busy doing you can't pray enough yourself and also to cover me in prayer to act sensitively at all times ( those who know me well will realise how important these prayers were) . So there were my friends back in Newbury worrying and praying and there I was in Oxford in a lovely wine bar eating mussels in white wine and sipping a diet coke. Mmm as I said ..surreal!
It was a bonding time however and different people react differently and have various coping mechanisms...I always eat when under stress and thankfully so did Willies grandparents...slightly posher food than I usually de-stress with however.
Zoe wasn't as keen, but sadly didn't have too much of a choice as I discovered over that week how restricted Zoe was in caring for her children. A genetic crumbling spine condition had led to metal poles and bolts being attached to her spine just a couple of years before..that and a frozen shoulder from a nasty car accident prevented Zoe lifting Willie and pushing his pushchair.
Looking at Zoe you wouldn't imagine there was anything wrong. She stands tall and is attractively slim with long brown wavy hair. A lady that lives on organic food, lots of fresh air and exercise by walking uphills she should be bouncing around a healthy shining example of good substantial living...sadly Zoe is far from the picture she portrays - suffering from sciatica that sometimes prevents her from walking at all, pain on lifting even the slightest weight, cannot bend over, cannot twist and turn, suffers constant migraines, irritable bowel syndrome (sorry Zoe if this is too much detail!) and much more nagging pain throughout her body.
Therefore she was unable to look after Willie alone and had an au pair since her operation on her back. In hospital she was reliant on the nurses and visitors when David wasn't on hand. How hard that was for her..I realised that more and more as I journeyed with her over the next few years. A yearning to be the best mother she could be but having to rely on extra hands to help her achieve her aim. So sad, especially when all you want to do is pick up you son and give him a cuddle.
Saturday arrived and again they starved this poor wee boy in the hope the operation would be carried out... Rheanna his lively big sister had arrived to visit Willlie and cheer him up. 'RaRa' as he called her was his second favourite person over his mum..and dad of course. He idolised her and I could see why...a beautiful 6 year old with an energy that oozed out if her ..jumping bouncing chatting running looking grabbing playing ...giggling...he loved it the most when she sat quietly beside him - telling him a funny story and giggling. He would get upset when she jumped off the bed to investigate something interesting on the other side of the ward...leaving him to wonder when she would return. Rheanna was a very busy bee. Everyone loved her and she exhausted us all lol.
Rheanna had the same big hazel eyes Willie had, with long wavy light brown shiny hair. Quite tall for her age and not an ounce if fat on her...due I suspected from being a whirlwind and not staying still for more than a minute. Unless she was drawing or painting then you might stretch that to 5 minutes.
This Saturday I offered to take the 'bounce' out to Oxford for lunch..and so we skipped off hand in hand (yes..I try to be whatever I'm needed to be and if skipping is essential then skipping it is!) I think we probably skipped to just outside the ward before I collapsed in an unhealthy heap and suggested a more sedate walk to the city centre. My latest diet crashed again in the form of a McDonalds...this was before I realised McDonalds was not on the list of eating places approved by Zoe..eek! I had much to learn.
On returning to the hospital with a slightly tired out little girl we heard the operation had been cancelled yet again :( ...how much more can parents take I bemused..but sad that so many emergency beds needed also. I heard myself volunteering to take Rheanna home to stay the night before my brain connected. Rheanna hardly knew me - let alone Pete and our 4 sons? Overnight? Of course she wouldn't want to go home with me..what was I thinking?
Rheanna was jumping up and down with apparent joy and was packing her back pack with necessities from the ward as I came to my senses..Zoe had resigned herself to letting her daughter go as she had no energy left to argue and definitely no energy left to entertain her for the next few hours.
Again it was a poignant moment for me watching a mother be divided between the needs of her two children where circumstances were overriding any maternal instincts.
We said goodbye to everyone..including the nurses, play nurses and other patients...Willie was upset we were going..he wanted to come to..so I think we pretended to be going to school to make the parting easier.
I arrived home late Saturday afternoon quite weary from a week of long emotional and prayerful hours ready for some recharging of my batteries. Selfishly I was glad to land at home into normality and spend some much needed time with my ever patient and loving husband and our four boys..I had missed them all...and now along with our new surrogate daughter.
The phone rang - it was five o'clock. I was preparing tea for everyone.
"They are going to do it..now..Willies on his way down to the operating theatre..." David cried. "Please, please can you come back and pray"
I'm not sure if it was the expression on Pete's face at the thought of putting a 6 year old girl to bed - as I left - or the daunting and overwhelming task of going to pray for a beautiful little boy that had stolen my heart within a week - as he underwent a life threatening operation - that made my stomach churn over and over...and over..
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