The Fear of the Unknown.

18^th February 2018

The last five days have been all about dealing with lots of different emotions; our own, Jack’s and those belonging to people around us.  Obviously we all cope with things in different ways.  Some people get angry, some get sad and some take comfort in humour.  As a family this last week has been a melting pot of all of them.  I’ve wobbled a lot more this week than I ever have before and have felt the murky greyness of fear creeping in on more than one occasion.  After I’ve let the ‘wobble’ wash over me I’ve spent time considering what triggered it and its always the same; the fear of the unknown.

It feels like a bit of contradiction to write that, one of the reasons for writing this blog was because I felt well versed enough to do it, a paediatric oncology veteran, if you will.  The truth is, at this moment in time we are facing different unknowns to last time.  Again, this feels like a strange thing to say as we have more knowledge about the disease, the treatment, the side effects, the journey ahead.  We know about roid rage (I will definitely be talking more on that in the weeks to come), the possibility of hair loss, line infections, spiking temps, and so on.  What we don’t know is if this journey will be the same as the last one.

You see, when we sat in the consultant’s room in October 2014 and heard about what was ahead we both (Lee and I) felt like we had been hit by a bus.  Unless you have sat in that chair as a parent it is impossible to imagine hearing those words.  You don’t want to imagine it.  The fear in that moment is worse than anything I have ever felt.  As I write this now, I have realised that it’s actually that memory that has triggered the wobbles this last week or so.

During Jack’s last battle with LCH we were surprised (and grateful) that in actual fact all of the awful side effects and stuff that the consultant and Macmillan team told us about, didn’t actually happen to Jack.  His hair thinned but didn’t fall out, he only got admitted to hospital once with a line infection (the week before he was due to have the bloody thing out at the end of treatment!!) and in the main (apart from SERIOUS roid rage) he was what I would describe as ‘well’, for a kid who was receiving regular chemotherapy.  This could be down to a number of factors and I am mindful of trying to keep some of the variables the same this time round.

However, the treatment protocol he will follow this time is different.  There are currently four different types of drug being considered (Vincristine and Cytarabine, both widely used to successfully treat a number of paediatric cancers plus Methotrexate and 6mp which will be given as the ‘maintenance’ part).   The first two would be administered intravenously, over a period of six months and the other two would be taken orally for 18 months.  The plan will be confirmed tomorrow when we meet his new consultant at Alder Hey.

I know that there’ll be people reading this who are wondering if there is a ‘better’ or less harsh way to treat this.  There are lots of articles and schools of thought about alternative medicines, treating with diet and the current buzz around the use of CBD oil.  Believe me I have read A LOT. I am following the research around ‘conventional’ and drug free treatment with keen interest and am always happy to hear from people who are trying these methods either totally to treat the disease or to help with the side effects from chemo.  As it stands, the scientific evidence from top clinicians points to the protocol I have mentioned, and we have made the decision to follow this.  We are absolutely pro-choice and you need to know all of the information before you can make a decision that’s right for your specific situation.

Aside from the fact we now have an extremely smart, inquisitive 7-year-old to contend with (he has composed a list of questions for the consultant tomorrow, all from his own mind) we feel confident that we can keep many of the other variables consistent with the first time we took on the battle.   These range from having a well-stocked cupboard of food, an abundance of distractions (films, devices, activities, carefully selected visitors) to doing everything possible to keep the energy around us all positive, safe, strong and loving, always.  We found that apart from buying ‘things’ that could help nourish him in one way or another, the one thing that money couldn’t buy was a healthy mind-set.  For starters, we went to great lengths to ensure nobody talked about Jack ‘being sick’ around us or him, he wasn’t and isn’t now. We asked

that people asked ‘how are you feeling mate?’ rather than saying ‘ahhh have you been poorly/ill/sick?’.  We kept the mood around him light and happy, unless he himself didn’t want it to be.

We have even had to ask people close to us to stay out of the way, especially if they felt they couldn’t control their emotions.  We even chose to spend less time in the company of those who we felt had too much negative energy the ‘mood hooverers’ we call them.  You see Jack was very in tune with how he and others felt as a three-year-old, and even more now. He has asked me in the last few days if I have ever felt angry, sad or frustrated about him having to go to hospital all the time.  He is asking because he feels angry, sad and frustrated and so I have told him that I have too.  I would never tell him how I am feeling without him asking first.  I think this is too much of an emotional burden for anyone who has the mountain he has to climb ahead, and he is only 7 remember.

We’ve received lots of really kind messages in the last few weeks, I really appreciate the love and support we have been shown.  I especially want to thank the other oncology parents we know, many of whom we know as an online community as well as those we have met in clinic.  Most importantly for us the encouragement we have had from fellow Histio parents/warriors has really given us a boost.  The Histio community is strong but largely unknown, unless you or a family member are diagnosed. We really hope that the biggest outcome from the shit storm (other than Jack kicking its arse AGAIN, and it pissing off for good this time) is that we start a massive awareness movement and encourage loads of fundraising to be done to help the clinicians with research and to support families throughout the diagnosis and treatment process.

So now we’ve agreed to turn the fear of the unknown in to a curiosity for what is to come, and to stop being afraid of what could go wrong, and start focussing on what could go right.