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
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