Approaching the end of the worst year of my life feels pretty strange. For the most part you might expect me to be keen to see the back of it as soon as possible. Yet I don't feel that way. New Years like everything else is another milestone and I don't think I am ready to pass through it yet. In a very strange way it feels like having to say goodbye again and staying in 2018 is one small way of staying close to Hannah.
Whatever you feel about New Years it is always a time for reflection. I don't really want to do too much of that. I wish I could pause all these dates for a little while but that's the thing about time. You cant stop it. Second by second, minute by minute, hour by hour and day by day you just keep being pushed forward on this conveyor belt of life. It's strange then why we do so much to fight it so much and why we seem to waste so much of it. I'm as guilty of it as the next person.
"Time running out is a gift, i'll work hard till the end of my shift, to give you every second I can find, and hope it isn't me who's left behind"
I don't have many goals for the New Year. In all honesty it scares me a little. We have so much more to get through and it's all looming fast. I'm going to keep writing. Eventually I'm going to write all of our story with Cancer down - maybe someone will benefit and maybe people will want to read it. Regardless, its an important story and I am determined to tell it. The more I think about it the more I realize it's a love story. All of this has to improve and if we don't talk about it, its only us unfortunate one's who know, who will demand change.
As for that I have work targets. Getting myself into some sort of shape, or out of a shape. Spending as much time as I can with Nora and Kate and that's about it. The rest, it's about holding on to hope and staying as happy as we can.
Beyond all that, quite honestly, all I can think about it last New Years Eve. It was one of the worst and most traumatic days and nights of our lives. Sadly there were more of those to come but I'm going to share some of the story of last New Years Eve with you. If you are just about to head out, or if you are in public place you might want to come back to this later.
Surprise, surprise we were in Hospital with our amazing friends at All Childrens Hospital. We had rushed back in the day before. After being great on Christmas day Hannah struggled the following days. She was on a ton of medications and these were effecting her electrolytes and interrupting hers, and ours, sleep. So she was up and down and fell between feeling okay and feeling lousy.
To cut a very long story short she kept struggling with swelling under her scar and this had come back over Christmas. There are reasons this happened which I will share in time such that we had been in surgery multiple times to correct this but sadly to no avail. No easy task while a child is under chemotherapy and has had recent radiation to that area.
We had taken her to the bathroom and she was having a melt down and a screaming episode when all of a sudden liquid shot out the back of her scar. It flew across the room. I knew straight away what it was. It was CSF and this was a serious situation. We set about calling Neurosurgey and they suggested waiting an hour to see if it dried up but it kept dripping and she started to complain about a head ache. Basically the CSF surrounds the brain and stops it rubbing onto the skull, if this goes then the brain will not be so protected and head aches will start - after that it gets pretty grim.
We called again and told them we were on our way in.
I was genuinely worried. It sounds funny typing that given all we had gone through and were going through but this I was really concerned about. It was an immediate risk and we were a good 35 - 45 mins from the hospital and there was no way I wanted to take her anywhere else if things got worse. I tried to hide my concerns from Kate and to keep calm but she reads me like a book these days and she knew.
As per normal. We were seen by Neurosurgery within minutes of walking through the door and a plan was in place to scan her and take a look. They reasured us straight away and for the first time in several hours we felt we could relax a little. At this point she was refusing to cooperate with scans and was demanded to be anesthetized. She was so good at the start and was awake for scans and radiation treatments but eventually I think she just got fed up of it all and became so used to being put to sleep she actually quite liked it. Why go through all that fear when you can just sleep through it. She was smart. We had already fed her and this wasn't possible so we had a much quicker CT rather than MRI. The Doctor came in and confirmed it looked like CSF. She was to be monitored over night and then an MRI in the morning to decide what to do.
We were giving her IV antibiotics and antivirals at home so her port was already accessed thankfully so no trauma there. I was thankful because the more agitated she became the greater the flow of CSF.
By this point we were used to these scenarios and had packed bags and supplies to keep us occupied. Our families were over for Christmas so they looked after Nora so we could focus on Hannah. We knew what to expect, how things worked, and we were well in tune with the system.
The fabulous Nursing staff took care of us and we set in for yet another night sleeping in chairs, watching the same movies, and another unknown day ahead of us.
The plan was to anesthetize her, scan her, and if she needed emergency surgery to take her straight to the OR with our blessing. We both expected it and by this time we were part of the furniture in Surgery and unfortunately very used to the process. This time the Neurosurgeon was going to take some healthy skin from elsewhere and seal the leak. Another scar on her. They were then going to add a drain in the back of her neck and would drain CSF for a couple of weeks to reduce pressure and allow the wound to heal. Another scar on her, and all of this in time for her next chemo cycle.
We were in a physical and mental daze at this point. Cancer families just seem to draw strength to keep going regardless of how you feel and regardless of the levels of exhaustion. You just become in tune with this grueling process with absolutely no regard for your own well being.
She as expected ended up in Surgery. I was a big fan of Doctor Tuite. All of the Neurosurgery team were fabulous to be honest. I always had a misconception that surgeons had an arrogance about them. Not true. Maybe its Oncology and Pediatrics driving a humbleness, who knows. But they always had time for my many questions, and they always spoke to us in a manner that offered absolute reassurance your baby was safe in their skilled hands.
So, there we were, pounding the same corridor again. We drank coffee and I walked up and down this corridor all alone with my thoughts. Counting every single second. Its horrific. You are watching these two double doors. Just waiting. Anxiety through the roof and there is absolutely nothing that can bring you down. Each second just pounds like an hour in your head and you wait and wait.
Eventually our family turned up with Nora and she provided some much needed distraction.
Dr Tuite appeared a few hours later and said all had gone well and explained everything in detail. We were told to head up to PICU and we would be able to see her once they had got her settled. We knew from experience what to expect. Hannah was an absolute beast after anesthetic. This gorgeous, sweet little thing turned into a monster. By this point we kind of enjoyed seeing this side to her. It was comforting to see her scream and shout at the nursing staff. All the fire I used to worry she didn't have. Well, lets just say she sure showed me.
Once we got to see her she had this awful tube coming out of her neck and several new bandages hiding her scars but for the most part she seemed fine. We got her fed and settled and tucked in for the next few weeks on PICU. We needed to be there as they were draining fluid every hour or so which meant Kate and I had the advantage of everything being taken care of.
The Oncology nurses are fabulous in the way they deal with you. The PICU team, well they literally seem to crave things to do. I almost felt like they were bored having only a simple task to deal with in Hannah, they seem like the Marines of Nursing staff. Hannah wasn't high risk and was only there because she needed one to one nursing care to monitor and drain her CSF.
PICU is awful though. Don't get me wrong. The people that work there are incredible. Truly humbling individuals and the very definition of team. But that place. Urgh. I will forever be grateful if I never again set food on a PICU again.
Nothing quite reinforces mortality like PICU. I don't mean to sound blunt but PICU is where kids die and there were several in our time there. I hated it. Loved the people. But I wanted to get back to the safety and security of the ward upstairs with all the kids walking round with no hair. Sounds crazy doesn't it? I hope you don't understand or you never have to understand.
That New Years night though will live with me and haunt me until my time is done.
It was roughly 3 or 4 am. Hannah was awake because she had spent the best part of the day asleep in MR and Surgery. So we were fighting to stay awake with her and begging her to sleep. Brave had been on its third loop or so and to say we were flagging is an understatement.
Then it happened.
All of a sudden these alarms went off and the place sprung to life. I knew instantly what was happening. My heart pounded. I think I shook with fear and exhaustion. I looked at Kate. I knew and she could tell from my face that she knew. Just across the corridor some poor kid had crashed or simply put was dying.
I'll never, ever, ever forget the haunting screams of his Mum. "You had better save my baby"!
It went on for what seemed like hours hours. At one point I think the kid became stable and then it happened all over again.
Then those harrowing, soul piercing screams. The poor kid had died. We had to listen to our own worst fears. The harrowing screams of that Mother will never leave me. I never saw her. I could never tell you what she looked like. But her voice still chills me to this day.
Hannah asked what was happening and we told her someone was having some treatment. She just decided it was someone having their port accessed. Something she would make noise at and she just shrugged it off.
To Kate and I though, it was chilling. It was awful. Our hearts were breaking for this poor woman, for the poor kid, and both of us were getting a first hand glimpse at what we knew could very well be our future.
Neither of us slept. When our folks arrived the next day they could tell something wasn't right. We saw it all. We saw them put the banner outside the room and we saw them take the body away and then we saw the clean up. It was awful.
I think of that Mother often. I hope she has comfort these days and has more good than bad days.
Unfortunately that wasn't the first time it happened and I have more harrowing stories, watching families dealing with their worlds falling apart in real time, watching mothers and fathers broken, watching siblings confused and heart broken.
Then dealing with the guilt and relief it wasn't your child, and then rebounding that grief through your head when it actually is your child.
Sadly now, we know some thing of what she went through that night and after.
So for this New Years Eve. I'll be thinking of that woman. I'll be thinking of this past year. For sure i'll be thinking of Hannah. I'll be thinking of people in Hospital now. I'll be thinking of my friends caring for their gorgeous kids. I'll be thinking of them dealing with their uncertain futures. I'll be thinking of my Sister and Alyssa. I'll be thinking of all the incredible people giving up their time to help others especially health professionals. I'll be tepidly looking to 2019 and most of all i'm going to drink a few beers and take care of a bottle of Bourbon until i'm not really thinking anymore.
Then I promise that will be me done with a drink for a little while.
I genuinely hope 2019 is a much kinder year for everyone and I wish you all the best for the New Year. Don't punish yourselves for 2018. Try not to be intimidated by 2019 and try to make the most of your last day of 2018. Honestly, you never know just what is around the corner.
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