Preparing for Radiation

I knew about Medulloblastoma long before Hannah was diagnosed. My background is in Radiation Therapy and I have treated and planned treatments for kids with Medulloblastoma before. I can still remember some of them fondly. It's funny how kids can leave a lasting impression and I'm sure Hannah did that with the wonderful people she encountered when they cared for her. I still work in the field but on the commercial side of things now but i'm still very much involved in the clinical world and I spend a lot of my time travelling around the world working with and teaching hospitals. I love it to be honest, I love travelling and going to new places and I get to work with and deal with some of the smartest people in the industry. The big benefit of course is I bounce off these incredibly smart and passionate people and absorb all the information so my technical knowledge of Radiation Therapy is pretty good.

It's easy to imagine then I was dead against my Daughter Hannah having radiation. The trouble is with Medulloblastoma you have very little choice. It's radiation or, well, you know. The shock of those first few weeks is so intense its almost impossible to make rational decisions. You are talking about debilitating treatments, long term side effects, survival chances and you have barely had any time to get over the words, "I'm sorry there is something there, your child has a tumour.'

There was a trial at the Hospital we were under looking at a chemo only trial for a specific sub type of Medullo called WNT. Unfortunately her molecular testing came back in the more much grim portion of Group 3. There has been a ton of work recently looking at the molecular side of Medulloblastoma - unfortunately the treatment side of things has a long way to catch up. I spent hours researching her tumour report trying to educate myself as much as I could. Some nights I was going to bed past 4 and 5 am only to be getting up a couple of hours later. I also spoke to her doctors and although Group 3 is the worst of the subgroup there was no indication of the really nasty stuff to indicate she should be anything other than standard risk.

The radiation treatment these kids go through is complex and quite honestly brutal. It involves treating the whole of the brain and entire spine for a several treatments and then a boost, or more radiation, to the area of the initial surgery. All in all it takes over six weeks, eight or nine if you include the planning and preparation of treatment. Depending on whether you are standard or high risk determines how much dose the brain and spine receives. It will come as no surprise that the lower the dose the better these kids do long term.

I know what the late effects are and I know how difficult it is, and how these poor kids struggle later in life, and at this time I don't think any of this had all really registered with me. For sure my profession was impacting on my judgement. It was certainly more of a challenge for the Doctors we were dealing with. As an example we used to treat palliative brain patients to 36Gy for their whole brain. High risk medulloblastoma kids are being treated to this dose, albeit over a longer period of time. Their brains are still developing, still growing, still figuring out life. Then they have to go through this treatment. Putting all this radiation into their gorgeous little adventurous curious and loving brains. Its brutal and its heartbreaking and I was grasping for any form of hope to not have to go down this route.

It took a little while for me to accept we had very little choice in the matter. Once you accept something is inevitable its amazing how your focus can move on so quickly when you are under such intense pressure. It's not sustainable by any means, but some how you keep running. The only thing you can do as a parent is to be as informed as you can and fight to make sure your child has the absolute best care and then you support them and love them as much as you can. I saw it as my job to make sure the I understood everything that was going on and I tried to learn as much as I could so I could ask enough questions so when the Doctors were on their drive home, eating their dinner, drinking a glass of wine, it was my child they were thinking about.

The other difficult thing is the radiation treatment has to start within four to six weeks from the initial surgery. So the opportunity to process and adjust to this change, or new world you are living in, just doesn't exist. There is no balance, no time to think, no recovery from the initial shock of, 'i'm sorry your child has cancer and we are going to operate on her brain tomorrow morning'. It's fast, it's frantic and its absolutely terrifying. As a parent those first few weeks, well the person you were before that, is entirely different after.

Thinking back on it all its incredible really how we, and all the other families we met, just got on with it all. We live in Florida and our closest Family are in the UK. There was just the four of us and Nora was just eighteen months old. I had not long since started a new role that involved more global travel - I actually had to fly home from Hong Kong due to Hannah's vomiting. That was a long, lonely flight. We didn't know at this point but sitting on a plane for 12 hours without any contact when your child has been to ER is rough - your mind does some crazy things to you when you are under stress and alone with your thoughts. That said I was still well away from the actual reality of the situation. Thinking back on it we were also quite foolish at this point - or maybe naive is a better term. We had told most of our close friends and obviously family but we kept the majority of it quiet. Back then we felt like it was no one else's business and it was something we would work through as a family. I learned later on this was a mistake. People care way beyond what you think is your inner circle and they want to help you. It's something we didn't use enough. If you are reading this going through something similar i'd advise you to tell people and let them help you, they want to, and you'll likely need them eventually anyway. However, we had family support and close friends back home and in the US, and my employer was first class with me, and that's all we thought we needed. Regardless we got through it all somehow.

By the time we knew we were set on radiation I had already entrusted some of my closest friends, colleagues and ex colleagues who I valued and trusted their opinions, especially those working clinical. I spoke to Doctors, Physicists, Therapists, Paediatric specialists, anyone I could get hold of really, and tried to gain as much information as I could. I even spoke to the companies who make the various Proton machines. I knew by this point we wanted her to have Proton therapy rather than the traditional photon treatment. There are pro's and cons to both but in the simplest sense Proton has the advantage of not delivering radiation beyond a certain point and so it would reduce dose to her heart and other critical organs during the spinal treatment. The dose also tends to be more homogeneous, or even within a volume, with less variable 'hotter' areas, at least with some of the techniques still employed, so long term it should in theory be more favorable to leading as much of a normal life as possible. This is all mostly in theory because pediatric cancer research is limited. Plus proton therapy was also something I didn't know a huge amount about. I can tell you the intricate details of the each individual machines, treatment techniques and planning systems for the photon side of things and I think I was hopeful a little lack of knowledge would ease my miss trust issues I was suddenly rapidly developing.

When you understand something so well and are very experienced in it, it is incredibly difficult to switch off and leave things in other peoples hands. At least it was for me. I knew how good I was and what my level was and I could count on less than two hands the people I thought I would be confident in leaving my baby with. Thinking back on it now I would have been terrible had we been back home in the UK and would have most likely led to awkward conversations and debates. This isn't to say the quality isn't there, of course it is, more that our only choice would have been photons and I would have been in the thick of a world I know only too well. I was absolutely in fight mode and I was being direct and I was being incredibly demanding. Not rude in anyway, but I wanted the best. I guess I'm just a little strange that way, but I presume if you ask a pilot who they would choose to fly a dangerous flight with his family members life at stake, i'm sure you would get a similar response. At least that's what I thought at the time.

I was absolutely wrong. The pressure is intense, you are under incredible stress. The people dealing with you need to understand that. Fortunately they do.

There are two options for Protons in Florida. Jacksonville, which is long established, and at the time a new center in Orlando. There we a few reasons why we chose Jacksonville. One the service is more established and so it was much easier to verify their quality and ease my ever more paranoid mind. I was able to talk to trusted sources and everything I was told was positive. I also knew the NHS were sending UK patients there and also quite honestly also because they called me back within the hour. It's remarkable how much the human factor can affect your judgement and decision making. I had a good conversation with the Nurse Specialist and she set about answering my endless questions or at the least making a list of them, and before the day was out we had an appointment to head up for a consultation and simulation session.

Jacksonville is a few hundred miles from where we live in the Tampa area so we had to stay over night and somehow had to figure out where we were going to stay for her entire treatment. We looked into AirBnB and other temporary rentals but it's at this point we learned about the Ronald Macdonald House charities. For those who don't know the RMH is a facility where families from out of town are able to stay with their children who are under going critical care that might only be available in large cities. They provide everything you could ever need and have an army of volunteers who give their time up to clean, cook and generally make you life much easier. I will write more about RMH but for now you can find more information about them here. I could never praise them enough they are a wonderful charity full of workers and volunteers who put kindness and the people they look after before anything else they do. A worthy charity for anyone wishing to raise funds. Those little boxes at the Macdonald's drive thru for your change go directly to the Charity so if you can, don't pay by card, and drop whatever change you can in there. I'm telling you it makes a huge difference.

We packed up a few things and set off on the drive up for a consultation and simulation so they could plan Hannah's treatment. By this point I was rapidly increasing my knowledge of Medulloblastoma. I was spending hours and hours reading articles, journals, anything that I could find really that might give us an edge. I knew Hannah was classed as Standard risk or average risk - pretty blunt terms to be honest when you are dealing with your child but that's the way it is. I knew based on that information we were looking at the 80 - 85% survival chances. I had read the new studies that broke down the various subtypes and gave survival chances based on those subtypes. Group 3 is grim and it worried me but there was nothing to indicate we were completely up against it. The problem with these studies are there is no consistency or detail. What radiation dose did they have, what chemo regimen, what were the timings of all this, what day did they start on, where there any delays? There are so many variables and yet there is so much data out there but its not linked and not enough people have access to it. So finding answers to questions is difficult to near impossible. Most answers are educated and based on experience but so many times you receive what are educated assumptions. It has to change. More has to be done to bring data together for analysis. If it takes a hundred thousand hours and saves just one child, it'll be worth it.

We drove up to Jacksonville for a consultation and pre treatment scan and met the lovely team up there. I noticed immediately one of our software systems and it crushed me a little and I put my arm around Hannah, for my comfort - not hers. The though of her name and picture going in there only added to my pain.

Those long drives were a little crushing. They take so long and you know you are heading to such a challenging time. You have to keep things normal and the usual family road trip stuff goes on. Until the kids fall asleep and you stare at this road alone with your thoughts.

The Proton center up there is lovely. It has a big waiting room with big windows all around. It felt a bit like a fish bowel. I couldn't relax. I was nervous, terrified and I was making judgments left right and center. Why were the therapists wearing normal clothes, how long were they taking, how did they look, how pleasant where they. Totally unhinged and totally unfair but that is what it was.

As with all things US health care we had to do the financial check in. Insurance, sign to say you will pay, any initial bills or costs to be paid upfront etc. The health care Hannah received was always first class. The people were brilliant. We had options, we were consulted on them fully at all times. But, this insurance nonsense is a mess and its stressful and it punishes people and there are better ways to do it.

Regardless, we eventually met the lovely Dr Bradley and the team and my judging went into over load. I had already asked around about her and was confident in her but meeting is something else. We went into a side room and did all the pleasantries. She was lovely. Instantly calm and compassionate and Hannah took to her straight away.

One of the little frustrating things of a initial cancer diagnosis is giving a full medical history to every single medical professional you meet. By the time we met Dr Bradley we were well seasoned at this process and in my heightened stress levels I had already been answering several questions ahead of where she was. It's pretty funny now. I know exactly why they do it but it does gripe a little after a while. Especially as you know they have read the notes. But, through the process we went and honestly, it was fine. Just being meticulous professionals and doping their jobs.

Once she was happy we got down to the business of Hannah's radiation. I knew the script. I had to check Kate was okay with everything many times. I went straight into technical mode and the Doctor duly responded at the same level. I was absolutely prepared and I wanted the absolute best and I was judging based on my questions and the answers. I threw in deliberate ones just to test her. I had looked at treatment plans, I had learned about Protons, I knew about algorithms, I had produced my best case with photons and I wanted to see how good the results were going to be. There were some things I didn't like, some I disagreed with, and I wanted explanations and justifications for them.

Dr Bradley was absolutely brilliant and she taught me the first step on a very valuable lesson. I didn't realize it at this point, but this was the start. See I was striving for absolute accuracy, demanding it almost. I thought I needed to piece together every single aspect of how they intended to deliver radiation to my Daughter. I wanted to know how it was going to be absolutely perfect. I was looking for the absolute perfect treatment plan and perfect process and I focused on minute details.

But I was wrong. I didn't need all of that at all. Not that it's not important. But in the grand scheme of things its not the most important thing.

What I needed at that specific moment in time was someone to be the absolute best of a human being. I needed them to listen, to patiently answer my questions and to treat me with patience and compassion. I was scared, terrified, I was tired, beyond stressed, I was being incredibly protective of my Daughter, I was convinced my attitude was the correct way, and the way Dr Bradley dealt with me was absolutely perfect. Her calm answers and sympathies with those ones she couldn't built a level of trust that continued all the way through Hannah's entire treatment, way beyond radiation. I valued her and her opinion so much that when my Niece was diagnosed with Rhabdomyosarcoma a little after Hannah died, she was the Doctor I wanted her to go to. For my sister as much as my niece.

Trust and time and focus and support are such key important things in health care. It was important to Hannah too. She needed someone she trusted and she needed someone we trusted too. That time taken to talk and communicate and have all our questions confidently and compassionately answered was vital to the whole process. It wasn't so much what she said to us but more how she said it. How you communicate with and how you deal with people is more important than what you are actually there to do for them.

It was such a valuable lesson, reinforced by pretty much every individual we encountered. It's a valuable skill but more importantly its an essential human trait and I will be forever grateful for that kindness.

We had such a bumpy road. So much went wrong for Hannah that we needed these relationships. We needed that trust for all of the incredibly difficult decisions and all things we all had to go through. It was the foundation we needed for the path we had to walk.

Hannah was anesthetized for the first part of her treatment. I fought it with them. I didn't want her to be. I was used to kids of her age managing without out. Fortunately I backed down, again based on the relationship and trust we were building with the team. It was the right call. There were complications later that would have caused problems had she not been. I've seen it done many times. I've set up children with the quiet beep of the monitor and dealing with the extra cables and people in the room. I knew exactly what they were going to do with Hannah. I've looked at parents and escorted them out of the treatment room. I've comforted them and assured them their child is in safe hands, they always were. But I never ever could comprehend what they were going through. I might have thought I did but I was a million miles off.

It's an incredibly difficult thing to leave your child with someone else in that environment. Especially when you know what they are going to put her through.

To prepare for radiation treatments you need a CT scan. Its for knowing where the beams are going to go and to accurately calculate the dose and how much radiation the machine needs to give. In the simplest terms. I was again judging. What mask were they using, how was she being immobilized, how tidy was the room. All of this mattered to me.

She was frightened the first few times.

I think I've written before the mini roles we played as parents. Mummy was her safety blanket which she wanted at all times and Daddy was the rock that held it together and fought for the best. Not that we didn't share all of it, of course we did, just that was Hannah's perception. She wanted Mummy at all times with her and I remember one time we weren't happy about something and she said, 'Don't worry Mummy, Daddy will sort it.'

The pre treatment team at Jacksonville had spent a lot of time settling her, calming her and explaining the process to her. Its important she was informed. Its important there were no surprises for her and it was really important she had some aspects of control. She was seven years old but never underestimate the intelligence of a child that age or their awareness. They were fabulous with her. She even managed laughs and a few jokes. If you are delivering radiation therapy to children and you don't have play specialists and dedicated nurses and support staff and therapists to take care of them, you are doing it wrong.

They have a dedicated Pediatric waiting room for the anesthetized kids. This is where they prep them and calm them and where they recover post treatment. There were a few other families there and we made small talk, naive to the likely hood these people will become lifelong friends and nor how important to our own well being they would be.

I was impressed with the way they worked. How they dealt with Hannah and us and also Nora who was far from the easiest baby to keep still. She was 18 months old at the time and as wild as they come. Hannah's zest for life definitely inspired her.

When it was time for the scan we walked down this long corridor. It was a normal CT room. I noticed a vac bag and inspected everything I could but by this point I was struggling mentally and my focus was to comfort her and focus on being able to leave her. We held her while they put her to sleep. It's only mild anesthesia but watching them fall asleep so fast is a nightmare that will never leave you. I saw them pick her up and rotate her into a prone position and we were escorted out.

I would love to be able to tell you I was strong and held it together.

Far from it. I don't know whether you have ever experienced anything that completely rocks you. For me I seem to bite my lip and really have to focus on my breathing. My hands seem to go to my head, maybe to help with the breathing and my fingers clench at the back of my head. A million thoughts swirl around my head and my breathing slowly becomes more rapid. I put my arm around Kate and told her I needed to get outside for air.

I'm not sure how long I was outside. But I wasn't holding up well. I remember looking at the time and knowing what they would likely be doing at that point. I focused on my breathing which was getting out of control and I was about to burst into a fit of tears. The first ones were already off and rolling. Then someone talked to me. He made a joke about my t shirt and I laughed and responded and in that moment he completely snapped me out of it. I'll never forget his smiley face and he was actually there for his own treatment. Funny how a little moment of kind engagement helped me out so much.

I eventually made my way back into the fishbowl waiting room and sat with Kate. I think Nora was taking a nap at this point and was asleep in her stroller. We sat and watched people and counted every single second. There is a small coffee bar there and a craft table run by the fabulous Barbara and Pam. There was a small kids play area and this big bright open space to wait in. It was just a nice, calm, pleasant environment.

We made small talk with a couple of families and one particular Dad who was well into the routine. They were from similar parts of the North of England and it was great really just to talk. He was calm and composed and we made jokes and laughed a little. Honestly, it really settled me down. For the first time in a month, since our world was turned upside down, we didn't feel alone.

That might sound harsh to our friends and family who had rallied for us so incredibly well. But, being able to find people and talk to people going through the same things as you were. It's hard to put into words, but those weeks at radiation, making those relationships and friendships, were the single biggest source of strength I pulled from throughout the whole journey.

There was no real phone reception and they didn't have internet. Honestly, it was great. The environment supported engagement. People talked and shared stories. Kids and siblings played and did crafts, and we all became some small family connected in the worst of circumstances. I miss our Proton family.

Hannah's scan took around two hours including recovery. We through went to see her. If you have ever been unfortunate enough to witness your child recovering from anesthesia - well my child turned into some sort of a beastly monster. It was terrifying at first. Then as it becomes routine you quickly grow to smile and enjoy it and take comfort from it. I looked at her tattoos they had given her. I counted and checked they were straight. I think I complained about the size of the pen thickness of the marks they had drawn on her, which Kate told me off for. But most of all we just wanted to give her a great big hug and kiss.

We had to wait a week to start treatment. I was impatient and pushing for as soon as possible. We spoke to the lovely nurse specialist and she told me she would call us a couple of days ahead of starting. We were pretty much ready to start the next day but I knew that was far from possible.

Hannah hadn't eaten so the first port of call was Pizza. She was on steroids still and I had never seen her eat so much in all her life. Pizza became a staple part of our diet through those early days of radiation.

Eventually we took a deep breath and headed back to the car and the long drive back to Tampa. I remember feeling calmer and a lot more composed and in control of myself after that first visit. I was more assured we were going to manage. The people I had met gave me confidence and my trust in them was building. Which was vital because nothing about the following weeks or months was in any way routine and we had multiple things to face.

Emergency trips to surgery, rashes, swellings, fevers, sickness and hospital stays and then of course the Mother of all hurricanes, Irma.

Much more to come...