Sorry for the silence lately I’ve been incredibly busy. I’m changing roles at work and we have just had the biggest radiation therapy conference. It’s fun, insightful and yet completely exhausting. I presented a few talks and the prep feels like never ending in the weeks ahead.
There was a period after Hannah died when I wondered if I still wanted to work in amongst radiation therapy. I’m glad that has passed now. I’m lucky to work with and deal with incredibly smart and passionate people and that makes it all a little easier to juggle.
At the trade show I was lucky enough to see Hannah’s Radiation Oncologist. It was great to see her and talk to her and to thank her for all she did for Hannah and us. I’ve written before how incredible these people are who cared for her and how their impact upon us, through kindness, gives us the hope to keep going. Small acts of kindness are gigantic beacons of hope to someone else. I’m so glad we built these relationships with her care team. It gives me some small comforting reassurance we did all we could for her.
I expect it is often emotionally exhausting working within Pediatric Oncology and it requires special, special people. I am sure there is a sense of desensitivity towards some of it. I remember being clinical and having no real idea of what people are going through. But also they juggle the realities of the situation and they push and drive for the absolute best for kids like Hannah and to some degree they fall in love with them too. How can you not? Kids are great at the best of times. When they are forced to be Cancer kids they turn into something quite incredible.
I recently did some filming with my employers support telling Hannah’s story. It was an exhausting day talking through many of the things that happened to us. I will share it with you eventually.
For whatever reason I have the capacity to talk through and share what happened to Hannah and our family. It’s not easy and there are days and times when I cant bring myself to do it. But there is a fire inside that I have to share, that her story is important, that if I can help just one person learn from us or be inspired to do good through Hannah then there is or was some small tiny justification for why the hell any of it happened.
It is currently Childhood Cancer Awareness Month and we raised funds and awareness for Ronald Macdonald House Charities who are an incredible charity. One video is of them sharing my thoughts on how incredible they are and about what the did for us. I did a talk in front of several hundred clinical people and shared my thoughts on kindness and some of the true realities of childhood cancer.
I want those who deal with sick kids to understand how vital they are and how the best of what they do is the human element. How they interact with you and take the time to talk and explain and build trust. All the little extra acts of kindness. I want them all to understand how priceless it is what they do and how much of an impact they have on families like us. Not so much their skills as medical people but more how they are as people. It is a gift.
The second video shares more of the full journey and more of the realities.
I discussed this with Hannah’s Doctor. We are not open enough or honest enough about the realities of childhood cancer. For most people it is a perception of bald headed kids walking down corridors with drip stands. In a lot of ways it is. But in many, many, many other ways it is not. Don’t get me wrong Children’s Oncology wards and radiation therapy departments can be happy jovial places. But that is because of the great people working there And a desire of families to keep it that way. There are many strange positives taken from a childhood cancer experience and in many ways it is full of hope.
But we have to be more open to the true realities of the negative side.
Childhood Cancer is breaking hearts hidden through reassuring smiles. It’s endless medicine routines, it’s keeping them clean, it’s teeth cleaning, it’s carrying them to bathroom visits when their legs won’t work. It’s removal of their liberties and watching that slowly crush them. It’s endless midnight trips to ER, its endless stays in hospital. It’s exhaustion and then quickly picking yourself up and going again. It’s intense anxiety, it’s fevers and it’s financialy crippling for many.
It’s fear and its screams. It’s scars and blood and so much sick. It is holding them down when they are begging you to stop but you have to keep going. It’s watching them slowly melt away as this poison slowly breaks their little bodies and knowing your only option is to keep giving them more.
It’s desperately keeping them going and keeping them happy and loving them almost more than your heart can take and trying to be normal and all while ignoring the big elephant sat there in the corner. Just staring at you.
It’s arguments with Doctors begging for answers when you know the reality is the answers are not there and it’s late night desperate searches for those answers - when you know the reality is the answers are not there.
For most it is a lifetime of debilitating side effects. Childhood Cancer treatment is brutal and there are incredibly tough life long lasting effects.
And for more than one in five of us, it’s final goodbyes and it’s loss.
Hard hitting right? You are most likely a little teary reading this. I get it. But that is the reality and we have to be more open about it.
That is Childhood Cancer.
Don’t shy away from it. Understand it. Turn the tears of sadness into fight. Do more. Talk about it. Be brave. Share what you see. Tell people about it. Make the reality more hard hitting. Do it because its true. Write to your Government. Tell them you demand more.
We have to do more for these kids. We have to have more support and funding available for these Doctors who are tirelessly fighting for our babies. We have to have better support available for families going through treatment.
Only by sharing and giving people a better chance to understand with the real realities will we turn people from sadness to activism.
Childhood Cancer is not rare!
Roughly one in 280 will be diagnosed before 20. Go do the school run and look at all those kids. Would you take those odds with your child? No. You wouldn’t. It is not rare.
Of those unlucky enough to be diagnosed more than one in five will not make it.
It happens. I happens to people like you. It happened to people like me and we were normal just like you. Fearless and ignorant to the realities.
There have been four dedicated new drugs for Childhood Cancer patients in the last forty years. Just four. There are hundreds of different types of childhood cancers.
That should chill us all. It should embarrass us. It is a choice we have made to ignore it.
Cancer kids are used in almost 50% of advertisements for fund raising. Of the funds raised they get an absolutely pitiful amount. Barely a few %. Now ask yourself why there have only been four new drugs in the last forty years?
Things are improving and people are working tirelessly to find answers and better solutions. It’s not happening fast enough and they need help.
The reason families like mine fight and share the realities, even those of us in grief, is not only because we know how utterly awful it is. But more because we don’t want you to go through it too. I want it to be so much better for the next beautiful little Hannah Barry. There are thousands of them out there and I’m telling you - it could be your turn next.
Please don’t shy away from it. Please listen to us. Please share. Please be inspired to help charities. Please write to your government representative. Demand more. Do more.
We have the capacity to drive change.
Raise awareness of the true realities of childhood cancer and turn that into hope for those next in line.
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