by Kerrilee Hall10/12/2018

5 Things I Wish I'd Known When My Daughter was Diagnosed with Cancer

I am a mother of an amazing young lady who, in 2017 at the age of 13, was diagnosed with an extremely rare and aggressive cancer - Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN). At the time she was to our knowledge the only active paediatric case in Australia. The last case in Qld, did not survive. As you can imagine that knowledge is isolating and frightening. Made only worse when Oncologists were seen to be Googling to know what it entails. 

Hindsight is a powerful tool and with this tool I have thought about what I wish I knew in those early days. 

  1. You are not alone – no matter how isolated you feel, there are people there to hold you up, bring you a cuppa or simply offer a hug. These people may be those you know but more likely those who are also going through a similar experience right now. It is hard but ask. Not only are there great organisations around to support you but also the fellow parents at the hospital. The parents surrounding you may well become the best friends you have ever had!
  2. Keep a journal – write everything down. You will have questions – they generally come at 2am. There will also be questions asked of you and if you have kept a journal it will be easier to ask questions if it has been written down. Sadly, you may forget things which is very normal as you will be tired and distracted.
  3. Take as many photos as you can. Ignore your teen who tells you no photos. They don’t need to look at them but as time goes on, they may well want them and so will you – they may actually be great material for blackmail later on! They also help form a great resource of where you have been and what you have survived. 
  4. Pack a bag to keep in the car, put essential items such as your favourite tea or coffee, a travel mug, toiletries, chargers for phones/computers (I found spare ones to put in), snacks that will keep, some cash, a couple of changes of clothes for yourself and the child. Having these few items on hand for those unexpected stays can make all the difference.
  5. Celebrate the days where you get to leave the hospital during daylight hours – and remember the staff are doing their best and are also having a long day.  

These are just a few things I have learnt in the last two years and I am sure you have even more that could be added. Two things I haven’t listed here are possibly the most important – trust your gut – you know your child better than anyone and no one can support them as well as you can. The last thing is it is OK to live minute-to-minute. This will slowly change to 10-minute intervals and then 24 hrs etc. You can do this – because we have too. Our kids are more important than our sanity. We can get our sanity back in time.