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.
It sounds as though your brave son has found how to ignore” not counting his chickens”. May your shining lamp of hope be strong and shine for ever.
What a wonderful tribute to a great organization . I had no idea te extent of the impact it had on a terminal child. Although I am fortunate enough not to have a child diagnosed with cancer I am a councilor for Cansa so am in regular contact with patients and have some idea of what you are going through. I pray daily for Josh and wish you both all the strength and courage you need.
Penny your post highlighted for me that we should never underestimate the power of kindness in changing people’s lives. Thank you for all that you share.
Love you Penny Castle – your absolutely awesome way with words, your amazing humour, your strength, candidness, your smile … make you an inspiration.
Penny normally I battle to read your posts. This one has left me energised and grateful…wow….thanks for sharing this powerful experience of life and investing in life!!! Thank you
An inspirational talk Pen xxx Wait, you do have a lifelong love of public speaking don’t you? Uuunaccustomed as I am…. 🙂 Much love xx
Inspirational and very moving Pen – it is good to be reminded of the power of kindness and consideration. Much love to you and your family xx
I couldn’t sleep this evening so spent a few hours reading the back stories of your blogs, mostly with tears running down my cheeks, but more importantly, with my heart bursting with love, hope and admiration. I don’t always get your updates on my FB feed, and I must confess that I need to be in a specific mindset to read your posts. I can best explain it as knowing that I need to be in a space of reference, and it doesn’t feel appropriate to read them when I know that I won’t have the time to feel the emotion, think about what it means and make conscious choices about how I will be one of those people who, albeit not close to your family, will ensure that your challenges have a positive outcome in the world because of the manner in which my own mindset is altered and my choices are improved by understanding and empathizing with your suffering and resilience.
This post drew my attention because it expresses what so many people feel about RFAD. They are my favourite charity because my own life was profoundly altered in a moment interacting with a friend who was about to go on a RFAD-sponsored skiing trip.
I was 19, as was my friend and we were sitting in the dining room at UCT’s top academic residence exchanging plans for the upcoming summer vacation. Keith shared that he was going to a ski resort and I remember silently wondering how a guy with one leg would ski so I innocently but nevertheless brazenly asked him if he was going to work and earn money.
He shared with me that it was a sponsored trip, and that his objective wasn’t to earn money. My own world view at the time didn’t allow me to understand this possibility: why would someone who needed sponsorship to travel not want to take an easy opportunity to earn extra money? We were both studying Business Science – making money was the point of that wasn’t it?
Keith was so gentle with me. When I reflect on how rediculous my line of questioning was at the time, and how narrow my world view was, he had every right to punch me. He didn’t. Instead he explained that his leg amputation due to cancer in his knee had not, after all, prevented the cancer from spreading and that RFAD was sponsoring the trip becuase he was staring down only a few months to live. He spoke kindly to me, never looking for sympathy.
My whole world changed in that moment becuase I realized that my friend had just endured some of the hardest exams whilst being in intensive chemo treatments. Where did my complaining about studying being hard work fit into this paradigm? Reflecting on why someone even bother to study with that prognosis turned my university career from a necessary evil into a passion.
Most importantly however, that conversation forever changed my mindset about what it means to be in business. To make money is not the goal.
That December holiday I repurposed my life: focusing on a business career to achieve excellence and pursue the goal of stewardship.
When we gathered for Keith’s memorial service at Easter the following year, many of my friends couldn’t come to terms with the purpose of Keith’s suffering and premature passing. I however know that he introduced me to a different way of living and I think that counts for something.
To your family, and of course to Josh, stay strong. I can see that you are changing many, many lives and whilst I respect that you are not believers, I am, so I will offer a prayer that you are granted many, many more days, months and years to continue to have the profound impact that you do.
Much love and strength to you all.
Thanks for your kind words, Michelle. I am reading it from Sugar Bay. After a month of seemingly endless trips to casualty and the oncology ward he has finally made it to his Grade 10 camp – something he’s been dreaming of since primary school 🙂 No self respecting fifteen year old wants their mother at camp with them so I am tucked away in a teachers cabin listening to the laughter of a hundred teenagers in the distance. 🙂