On Thursday 19 October I was invited to share a little about our journey at the Reach For a Dream Foundation donor breakfast – here’s what I told them….
Good morning. My name is Penny Castle. Julia asked me to come through today and tell you a little about our journey since our son, Joshua, was diagnosed with cancer earlier in the year and also a little about how Reach for a Dream has impacted our family.
If I am honest I never really understood the value of organisations like Reach for a Dream. We live in a country where so many need so much. How could granting the dreams of a few individual children make a difference?
When I met Julia I asked her. I asked her in a nice way so that she’d still fulfil Joshua’s dreams but I asked all the same. She told me that by fulfilling the dreams of kids with life threatening diseases Reach for a Dream (RFAD) gave the kids purpose and hope and something to focus on beyond the struggle of just staying alive. Through my own studies I already knew about the link between positive outlook and prognosis. So it sounded good – and I really wanted her to fulfil Joshua’s dream – but I still wasn’t sure I got it.
Ten days ago I found myself in the Javits centre in New York for Comic Con. Comic Con is the highlight of every nerds existence. Over the course of four days 165 000 comic book readers and fantasy fans congregated in New York to meet the artists and the writers behind the super hero phenomenon as well as to hear about the latest releases and news in the world of comic books.
I “got” the reason why RFAD is so important whilst I watched David Finch stop a line of dozens of fans to chat to Josh about his cancer and to draw him a personalised batman. Joshua’s grin lit up the room when he read the inscription “lets beat cancer” in the front of his Batman omnibus edition. For those of you who are not 100% geek let me enlighten you – David Finch is one of the artists behind comics like Batman: The Dark Knight and the New Avengers. He is comic book royalty and there he was holding up all these people to connect with my son. Just being kind.
In that moment I understood the immense value of RFAD but for you to understand what I mean, let me tell you a little about Josh.
As of today Josh is 6 months and 26 days past his expiry date. Why do I say that? Well on 19 January 2017 Josh went to see the Doctor for what we thought was a urinary tract infection. When the doctor found no sign of infection she had the presence of mind to order an ultrasound. The ultrasound revealed that Joshua’s liver was twice the normal size. She had already secured an appointment with a paediatric oncologist by the time I got the call.
Over the next few days Josh underwent blood tests and CAT scans and physical examinations and was admitted into ICU for blood loss. On the 24 January we were told that Joshua had been diagnosed with stage four cholangiocarcinoma. Cholangiocarcinoma is cancer of the biliary tract. It is aggressive and incurable and rare. So rare in fact that about 8000 adults will be diagnosed this year for it…in comparison with 250 000 adults diagnosed with breast cancer in the US alone. The important word though is ADULT. It is unheard of in kids. I have managed to tack down only four documented cases in children. Ever. Of the four only Josh and a teenager in Israel are still alive.
We were also told that because treatment would be invasive and painful and held no hope of cure the paediatric oncologists would not be offering it to Joshua. They sent us home with no treatment plan. The surgeon who performed Joshua’s biopsy, cried when he told us that, without chemotherapy, Josh had about 2 months left to live.
We went home and prepared for the end.
Don’t be sad though because we are getting to the good part. You see we live in a world that is tough, it’s filled with pain and corruption and hardship but even in the darkest moments there is light. And for our family light came in the form of kindness.
In those terrible days when we found ourselves blank eye and struck dumb with fear and sadness we also experienced immense kindness. Truly more kindness than I can list here for you today: like his teachers who arrived in full academic dress to present Josh with his academic colours in hospital; or the friends who spent hours hanging out in hospital rooms or his friend’s mom who made it her business to investigate treatment options and who, eventually, bullied us in to door of the adult oncologist who is currently treating Josh. There has been so much kindness but the people I want to tell you about are RFAD.
Back in July the RFAD team contacted me with a request to come and talk to Josh about his dreams. Julia tells me that most kids have dreams that are easy to fulfil – but not Josh. Josh had 3: Comic Con in New York, to visit the offices of DC Comics who are in LA or to visit the Haydron Collider in Switzerland. I counselled him after that first meeting that he wanted too much, that there were other kids with easier dreams. That he shouldn’t expect too much. Josh mostly forgot about the meeting and went on with his life.
I wish you could have seen his face when dream makers of RFAD presented Josh with tickets to Comic Con. We saw a smile bigger than any we had seen since he was diagnosed. He was green with nausea and fatigue and still his grin lit up the room.
And something changed. Now it could have been the chemo working, or the after effects of radio embolization or the new diet he’d embraced or it could have been that he had something to look forward to. You see he started planning at a really practical level. He realised he’d need to be stronger to enjoy Comic Con. He started eating – even when he felt terrible. He started walking with me each day, to prove to me that he wouldn’t need a wheel chair for the event.
And since returning from New York he hasn’t stopped planning. Now he’s planning to ace his November exams, he’s planning how he will get back to swimming and archery next year. He’s even planning which university he will go to.
We began to feel guilty that RFAD had invested so much in this kid who seemed to be getting better! I called Julia who laughed at me and told me that this is the point.
This is great for Josh and me but what is in it for you and for people like you who give so much to these kids?
At worst, cancer will win and you will have the satisfaction of knowing that Josh, and kids like him, got to do that one thing they had always dreamt of.
And that is enough.
But at best, and I believe in the best, you have changed Joshua’s prognosis. Every minute he is planning for the future is isn’t dying. He might live a little longer because of RFAD or even long enough for a cure to be found.
Either way his life has been changed because he (and the people around him) have had first hand experience of your kindness.
Comic Con was AWESOME – but the real gift has been in experiencing such extreme and unexpected kindness in a way we could never have imagined.
Josh is an amazing child (I know this I am his mother). He has always been bright and ambitious and enthusiastic but through this experience he has also learnt about the power of kindness. Of how it feels to experience kindness and what it means to do good for someone else just because you can. And he knows – I know – that in our darkest hour it isn’t grades, or money or success that have given us the courage to put one foot into front of the other and keep going. It’s the kindness that we experienced.
So…thank you for fulfilling Joshua’s dream and thank you a thousand times more for the lesson in kindness that we have received.
Our lives, be they long or short, have been made immeasurably richer because of the Reach for a Dream Foundation.