There is something there

September 1st is the start of Childhood Cancer awareness month. I will say time and again that it could happen to any of you, at any time. That air of invincibility to walk around with each day, its not real. Life can flip upside down in an absolute instant. This is the short story of our lives doing exactly that.

I remember thinking back in early 2017 that I was the luckiest kid on the planet. Everything I never new I needed and wanted, I had. Two beautiful little girls, a lovely house in Florida, great friends and a happy and healthy marriage. One minute you have what seems like the perfect life and in an absolute instance it all changes.

That day for us was June 20th 2017.

Hannah was in our local hospital. We'd been in the week before but sent home after her vomiting had stopped and they had replenished her fluids. I had cut short, and flown back from a work trip in Hong Kong, and so it was long tiring days worrying about what was wrong with her. We were discharged on the Wednesday the week before but she vomited again the following morning and it was at this point things started to get scary. kids get sick, that's normal, but this was prolonged vomiting and starting to be incredibly worrying. We contacted her Pediatrician and they did some more blood tests and stool samples and told us to take her to the ER if she started again over the weekend.

Well, things did not improve, they went worse actually. She couldn't keep down food and honestly had pretty much given up trying at this point she was so sick of vomitting. We were admitted again on the Monday. I remember looking at her in the ER and she just looked terrible, almost like she was dying. We were starting to be more pushy for answers now and on the Tuesday morning she had a CT scan of her brain. At this point Kate's motherly intuition had long since kicked in and she was thinking the worst. But, you know, it doesn't happen to normal people - it couldn't possibly happen to us.

I went with her for the CT scan and stood behind the Radiographer taking the image. I thought I spotted something unusual as the scan was capturing each slide - my background is in Radiation Therapy and I'm used to looking at brains but in no way am I an expert. I asked the guy to scroll back through the image, which he briefly did, but stopped when he noticed something unusual too, and it was at this point I realized we might be in deep trouble. My heart sank a little further when he offered to take us back to the room. I have worked in hospitals and I know how out of the way people will go for those who really need it, regardless of how busy they are. When we got back Kate asked if everything was alright and I just nodded, clinging on to hope that I was wrong. I picked up my phone and and started to google pediatric brain tumors and familiar words came back at me, ependymoma, medulloblastoma. All diseases I had come across before. I have treated and planned radiation therapy treatments for kids with these diseases before.

A short while later the Doctor came in with a forlorn look on his face and I'll never forget the words, "We need to send you somewhere else there is something there. What we feared is true".

I cant really explain what happened next.

My breathing went incredibly rapid my hands and legs became incredibly tight and I started to squeeze my face. I think I said several curse words and repeated "this cannot be happening" as the shock of it all and anxiety took over me. He showed us the images and I started with the start of what would be endless questions. There on the screen in the posterior fossa part of her brain was a 4cm or so tumor. There is was clear as day. A small little round blob where a small little round blob should not be. It was exactly what I had seen. I shared a look at Kate and she looked as terrified as I felt. Just this shear look of desperation. If a face could ever encapsulate 'what the f*ck', that was it. My breathing was rapid. I was shaking and I was trying to take slower breaths. Its hard to explain what this situation is like, and quite honestly, you have no idea what its like unless you have lived it. We all have dark thoughts at times as a parent but they are no where near the reality of the nightmare.

We were in tears at this point. I was rubbing my face over and over. The team were brilliant with us. They gave us time, they answered the questions they could, and they set everything up for us to be taken to the specialist hospital. We had nothing to do other than try and process what was happening.

It was at this point as we were freaking out I realized poor little Hannah was in bed watching all of this unfold. I went to give her a kiss and a cuddle and she said softly and cautiously, "what's wrong with me Daddy". How do you even start or begin to explain? I think we mumbled something about an ouchie being somewhere it shouldn't and we needed to get special Doctors to help us get rid of it. I composed myself somewhat and told her it was going all going to be okay and Mummy and Daddy were just a little upset by it. Honestly, she just smiled and said okay, I'm sure inside she was terrified, but she wasn't showing it to us.

A short while after comforting and loving Hannah I told Kate I was going to phone our parents. We live in Florida and all of our family is back in the UK. Tons of thoughts were rattling through my head at an insane pace. Did we need to go home for treatment, did we stay in Florida, how were we going to cope with Nora being 18 months old, all of this running through your mind. I left the room and walked about 5 steps, and just as I heard the door close, I broke down. I mean I was uncontrollably crying I was struggling to breath and struggled to stand. If that wall hadn't been there to lean on I was heading to the floor. The emotion completely over took me I was rubbing my face and had to hold onto the wall. I'm not sure how long I spent like this but eventually someone brought me some water and that exchange snapped me out of it. Then, once I recovered and composed myself, I had to figure out how in the hell I was going to tell our folks.

I started with my Dad. I very rarely call as we just use Skype and Facetime on a regular basis, they obviously knew Hannah was in hospital and so I guess even the fact that I was calling must have sent a shock wave through him. I cant really remember much about the exchange but he kept himself composed and set about planning to get out on the first available flight. I then called Kate's Dad. He had a bad accident at work only weeks before and he was recovering from a broken hip so it took a while for him to answer the phone. He was slightly less composed but again I told him to coordinate with my Dad to at least get Kate's Mum out - travelling for him was clearly off the table. They all had questions but we didn't have the answers other than this was obviously all very serious.

It was awful telling them. I hated having to do it. For the first time in the four years since we left the UK I had a feeling of being alone.

I then contacted our local Friends to tell them and ask if they would take Nora. We didn't really have any stuff for her but they sorted it all out and told us not to worry about anything but Hannah. They picked up Nora and it became the three of us - something that would happen time and time again.

What followed during the next hours and days were completely taken out of our hands as we got our first taste of Johns Hopkins All Children's Hospital in St Petersberg. I could never praise or thank them enough for all they did for us.

A team of ambulance people turned up with what can only be described as the Optimus Prime of ambulance beds. This thing was massive and had all of this equipment strapped to it. There were four of them, two nurses, a respiratory specialist and a paramedic. It blew me away. Inside I'm screaming why the hell does my little girl need all of this? When the Doctor told us we needed to go somewhere else I actually asked where we were going because I thought we were just going to get in the car and drive her there. Crazy right? I didn't expect all of this and the entourage. It was completely intimidating and utterly terrifying. They put her in the bed and and set all the monitors on her and told her all about the special ambulance and then set about the paper work with us. Kate traveled in the ambulance with them and I followed in the car.

I don't know if you have ever taken the drive on i275 south from Tampa to St Pete. It's absolutely beautiful driving across Tampa Bay when the sun is beaming. That day was no different. The weather was glorious, on some days you can see Dolphins swimming, there wasn't a cloud in the sky, and here I was in my car following an ambulance with my baby in. I remember looking at all these people in their cars going about their normal lives. Commuting, picking their kids up, going to the beach, anything other than what we were doing. What was our normal now? I called a close friend just for a voice to keep me company.

We got to the hospital and I used the Valet - any of my British friends might be thinking what the hell but its pretty normal in the US. I walked into the main foyer and checked in to find out where they had been taken to. Eventually I got a pass and headed up to the seventh floor. I had actually beaten them up there and she eventually turned up smiling after having a nap on the way. It seems an ambulance ride with Frozen on the TV was actually pretty cool to a seven year old. We were greeted by the beaming smile of Amanda who was Hannah's nurse. She was fabulous and immediately set about getting us settled. When I think back on it now both Amanda and Greg, who was on the night shift, were nursing Kate and I just as much as they were Hannah.

Over the next several hours we met absolutely everyone as a procession of Doctors, Neurosurgeons, Nurses, Neuro Psychologists and many more entered the room, introduced themselves, and began the process of getting to know and building a relationship with Hannah and us. We repeated the same story over and over and over as they each pulled the details they needed from us. It's hard to maintain the enthusiasm after a while and eventually you just tell them as much as you recall from what you the last one and leave them to ask for the missing details. It was so impressive, it was like clock work and everyone was first class. We actually met her Oncologist at the end of the day. We had just sat down and literally said to each other that we could finally take a break just as she walked in. It must have been strange for her walking in to us looking at her and starting to laugh. I wonder what she thought.

We started with all of our questions and she set about answering as much as she could. She mentioned Chemo and Radiation and that set me off on many more questions as it dawned on us a little more how much our lives were going to change and we were terrified with how we were going to get through it all. Her Doctor was brilliant, she was all the way through at every step. She eventually left and we had a quiet period for the first time all day. We had a little 'what the hell is going on' moment and we had a cuddle together as we watched our sweet Hannah playing in bed.

Neither of us slept a wink that night. We were having an MRI in the morning and then scheduled for surgery the morning after that. My stress levels were sky high. I felt like I would never be able to sleep again. I started reading about posterior fossa tumors and set about telling a few other close friends what was going on. At one point I left the room and went and sat on some chairs by a window over looking the car park. Once again I broke down, a little less than before but I must have been crying for a good few hours until the sun started to come up as I tried to process what in the hell was happening to us.

We went down to MRI the next morning. Once again they were brilliant. I went in the scanner and had to wear some fancy pants which Hannah took great enjoyment in laughing at. Kate went off for a coffee and me and Hannah went into the MRI. She was strapped in and made comfortable and I stood with her and stroked her leg to let her know I was with her. She actually fell asleep pretty quickly, surprising really given how noisy they are. The scan lasted about 90 long torturous minutes and I felt every single second. Being alone with your thoughts for that length of time was awful. The places my mind went to were dark and scary and I hated every single minute. What was this machine going to show us, what was it going to change, what were we going to do next? I was teary through most of it as my mind used the quiet time to process everything. The Tech's taking the images were clearly aware and one came in and gave me a box of tissues. That set me off again. Quite often the little things people do for you were the hardest to deal with. I don't know why, maybe because it reinforced everything we were going through. It all matters though and every time I go to relive these dark moments a small act of kindness warms me a little. A friend who works with pediatrics in Radiation Therapy sent me a picture of a card a parent sent her, and it went along the lines of 'sometimes the smallest gestures occupy the biggest part of your heart.' Never underestimate the power a little act of kindness can have. I will write about kindness soon but it will reoccur time and again in all of these stories.

Sometime that afternoon my Parents and Kate's Mum turned up. I went down to meet them and bring them upstairs. All Children's Hospital has a big open foyer, with the restaurant and dining area and an outdoor garden area adjacent. You walk through here to the lifts to go to either surgery floors or to the numerous wards. We were on the seventh floor. It was quickly becoming clear amongst the bustle of a busy children's hospital there are families there for routine assessments, still in their normal routines. Then there are people who are in amongst their own nightmares. Who's worlds are being shattered and we were suddenly those people. We would learn to easily spot the cohort we now belonged with.

I tried my best to keep it all in so I didn't compound their pain but I couldn't hold it together. I wanted to be strong. I knew they would be hurting for Hannah and I didn't want them to see how much I was hurting too. I didn't want to compound their pain. I tried, honestly I did. Even gave myself a pep talk in the lift down too. Yet I saw them and just completely broke down again and fell into their arms. Funny the things you stress about in these situations. I let them ask all the questions they had before we went upstairs - it must have been torturous being on a plane for all those hours not knowing what was going on. They didn't get the answers they were looking for because we had no idea of them either. A lot of the trauma is the sheer unknown, and there was tons and tons of that. The desperate wait for answers and information, the what abouts, the what ifs, and a whole big pile of things you are just too terrified to even consider.

Hannah Was delighted to see them. I still remember her excited face in the bed and her arms open wide. They spent a few hours with her before heading to our house and to pick Nora up. There was a strange tension, a sadness if you will. Trying to comfort Hannah but with the underlying shock and fear of all these very new surroundings. We all knew surgery was the next morning and so they were going to come back early for that. Surgery within about 36 hours of arriving.

We met the Neurosurgery team and the incredible Dr Jallo came to introduce himself and talk to us about the following mornings plan. I had a preconceived idea that surgeons were generally a bit rude and off. Guess it comes with the territory and focus they have to maintain. Not those guys though. The whole team were incredible. Dr Jallo has a way to ease your stress within a five minute conversation and convince you everything was going to be alright. He did mention some risks though and one in particular terrified me.

Some kids after this surgery suffer from posterior fossa syndrome. It can cause many things, unbalance, weakness and in some cases they lose the ability to speak. It will come back but there is no real time limit. That completely terrified me. Not just because in general you couldn't shut the girl up - she was the very definition of a chatter box. But how in the hell were we going to communicate with her, how would we know how to help her? More thoughts to add to the intense anxiety we were suffering. Then this information, inevitably leads you to the internet, and I can tell you, there is very little comfort there.

It's so terrifying, there is so much movement, it's all at a breath taking pace. You face relentless questions from the medical team. The same thing over and over. They hit you with a barrage of questions, trying to find out absolutely everything they can about Hannah and our lives and history and repeating it until they are certain they / we haven't missed anything out. All of this while you have a million questions of your own running through your head, helpless in the search to answer them, and quite honestly, terrified to even say them out loud.

That night was the worst night of my life to that point. I didn't sleep a wink again. I honestly felt like I would never sleep again so on edge I was. I sat and watched her sleeping for hours. I looked at every freckle on her beautiful face and I soaked up every inch of her. She was so unbelievably beautiful. There is something heart warming watching your kids asleep - maybe because they are actually quite for once - but its just a little moment you get to soak them up and take up the miracle that they are. She was about to have life threatening or life saving major surgery and in my head I couldn't get beyond the fact this might be the last hours we might ever spend with her. I was teary again through most of the night and I left the room at some point to count the cars in the parking lot and flood the floor with my distress.

I just sat watching the dark night. Waiting for a car to pass or something different to look at. I think I felt really alone. I wasn't, obviously, but at that moment I think that's what I felt. I couldn't wake Kate, at least one of us needed some sleep and at that point everyone I new was asleep. It was around 3am I began to text a few more close friends in the UK and let a few more people know what we were going through. Eagerly awaiting there response for a little distraction from this nightmare - no doubt while they were busy with their normal morning routines. Some way for them to start their day with that news, thinking back on it now. Maybe it was the quiet and calm I didn't like. I know throughout the weeks and months ahead I found it easier when things were happening. The distraction of busy to take my mind away from processing the reality.

At some point our Nurse, Greg, came and had a chat with me. We talked about a few things, just general stuff really, and then he gave me some advice to make sure we take time for ourselves and a reassurance we could get through all we were going to have to get through. I thought of this chat a lot through our time with Cancer. I'm not sure Greg realizes the impact those few minutes had on me but they a big effect - I guess it was the first steps of many acts of kindness we would encounter. Just a little time out for someone. Some words, some comfort, some empathy, and honestly, just a little distraction.

Hannah was prepped for surgery around 5am. Gowned up, scrubbed up in all the wipes and the routine they go through to make sure she is completely safe. I watched and helped, comforted mainly, Greg got her ready. She was pretty compliant. She was a really good kid. Mostly did what she was asked.

We had talked to her about surgery the day before and tried to answer her questions. She had no idea what surgery was, no clue about tumors, no idea things can go wrong with our bodies etc. She was just an innocent child. Super, super smart, but still a seven year old. The child life people had been in to talk to her too and they were fabulous. If you are involved in the treating of children and you don't have some form of child life or play specialist then you aren't doing it right.

We went down to surgery at about 7am. The shot, but incredibly long walk through the back corridors most of the public don't see, and the clinical lifts to surgery. It was awful. Kate and I were terrified. I was so scared and so utterly helpless. We hadn't shared our fears together but they were the same. We were having to face up to our absolute worst fears and the reality was much, much worse than those nightmares.

The surgery team though were great, they gave Hannah some relaxation medicine so she wouldn't really remember much. She was terrified too though. She had this look on her face that was stern and she was biting her bottom lip. We tried to comfort her but we were a mess ourselves. I had to stand behind her and hide my tears a few times. I hadn't slept at all for days and this was the pinnacle of all the intense stress we had suffered all the hours before and it was so difficult to keep it together. Dr Jallo came in and said hello and reassured us she was in great hands.

Then came the daunting time to take her through. I actually sneaked a photograph of her in fear of it being the last time I would see her. I later found out Kate had done the same. Then we were at the doors of surgery and the team stepped aside as we said our goodbyes. At the time it was the hardest thing I'd ever had to do in my life. We gave her a kiss, told her how much we loved her, and watched as they slowly wheeled her in. Then those big double doors closed and our hearts sank through the floor.

We were completely broken. We cuddled each other as the impact of everything that had happened the prior hours hit us. Like a pair of zombies we went for more coffee, back through the bustling foyer, and started the process of pacing down the corridor waiting and waiting and waiting. At some point our parents turned up with Nora and it was so good to see her. Like, hard to describe just how good it was to see her good. I'm not sure where we would be without our little Nora. My heart goes out to anyone who has to do this without another child and all the distractions and energy and love they bring.

The surgery lasted a couple of hours and Dr Jallo came to see us and told us it had gone well. He was able to remove all the tumor he could see but the initial biopsy swab indicated it was Medulloblastoma. One of the worst of all the things it could have been. Regardless, my heart sank a little, but after that it bounced back up as all I wanted to do was to go see her.

I'm not sure what we expected to see when we got there but it certainly wasn't the sight that greeted us. Hannah was a gentle little thing, she was so kind and caring, and wouldn't say a bad word of anyone, and nor would she allow you to do so. As an example every time I would offer some verbal feedback to fellow drivers she used to tell me off. "Daddy how would you like it if someone said that about you, its not nice?" So the sight of Hannah fighting and screaming at the poor nurses was somewhat of an unexpected shock. "Get off me Doctor" she was screaming, "why did you make me so dizzy", "get off of me". We were gob smacked. The Neurosurgery team came in and told us it was a good sign. At least we had an answer to the no talking thing we were stressing about. We very quickly learnt Hannah always went into beast mode after Anesthetic it became something of a comfort as we apologized on her behalf to the lovely people tasked to look after her.

She was far from happy though. No doubt relived of the fear she was facing and now just dealing with the effects of surgery. A good prod and poke around the posterior fossa of the brain certainly had its effects.

She had some more vomiting but this settled as the night wore on. She was holding her head at a funny angle because of the surgery and would not move much because of the dizziness. But, she was talking, and even managed a few laughs at the movie Brave on the TV.

At some point I fell asleep. I must have been completely exhausted and the position I slept in was evidently uncomfortable. Around 3am Hannah woke up vomiting again and Kate asked me to grab the sick bowl. I stood up to help and immediately hit the floor. I'd slept in such a position that my leg had gone completely dead, and was clearly so tired I didn't feel it. Imagine the scene the nurse walked into, Hannah vomiting, Kate helping her, and shouting at me for rolling around on the floor trying to stand up. I honestly couldn't stand. I'd climb up the side of the chair, weight bear on my legs and down I would go. It must have been a good 10 minutes I was down there after I'd give up trying. Once the vomiting was taken care of we laughed. A funny little moment to end an incredibly difficult few days.

We woke up the next morning and we went back to the normal ward and back with the lovely Amanda and a couple of days later, after physio, many more tests, and careful monitoring of her, we were sent home and began to focus on piecing things together and working out what in the hell we needed to do next.