Manny in Hospital

Relay for Life

Some months ago, almost my entire family took part in the Relay for Life, a 24-hour fundraising event. I posted about it beforehand. We raised over AU$20,000. Below is a speech I gave during the formalities.

On Fighting Back

Since my son Emmanuel was diagnosed with liver cancer when he was 11 months old, I have been reflecting on the idea of the ‘battle with cancer’ and how it could apply to one so young. Was he too young to be able to battle anything, let alone cancer? Does he even know what is going on? Is he capable of fighting back? I am not sure if Little Manny is in the way you or I are, but that doesn’t matter because I am not really a good fighter, I give up too easily. But Manny has shown me what it means to be a good fighter. He has shown me to always be positive, to keep keeping on, not lie down and let things overwhelm me, to walk forward with my head held high and my eyes on the horizon. Live in the moment, don’t wallow in misery for too long or you’ll miss out on what’s happening now, which you may never be able to get back. After our experiences with Manny, I know that if I ever have to go through what he has, I will know what to do. He has been the example for me.

He has been poked, pricked, prodded, pushed, pulled, and pumped full of more drugs than I care to remember. He has had major surgery which has left him with half a liver (the only organ that is capable of regenerating). I’ve never had a general anaesthetic; Manny’s had about 5. He’s been through the wash, wrung out and hung to dry. Multiple times. But he’s not let that stop him. Cancer? Pah, he says! Chemotherapy? Bring it on, he cries! All Manny cares about are his broom-brooms and throwing balls around the house. And milk from Mummy, but that’s another story. Nothing has stopped him smiling and laughing up at us for too long, or waving at the nurses and doctors, or at any random person for that matter. He still gets sick with excitement when he gets his favourite truck to play with, or when its time to read ‘Where is the Green Sheep?’ or any of his other favourite books (again). Manny has the resilience of children, but he also has a friendly and outgoing nature that makes the battles faced by friends and family more easy to bear.

We are all fighters, all of us here. Just by being here, taking part in an event such as this, we are all part of the global search, the fight for a cure for cancer. Everyone that donated or helped or supported is part of the fight. And the greatest weapon we have is hope. We must never lose hope. We must never lose hope.

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Help Find a Cure

No-one is safe from cancer, not even children, even very young children. I am no expert with anything medical, but I know this for a fact.

My 1-year-old son Emmanuel has a form of liver cancer called Hepatoblastoma. Thankfully this type of cancer is highly curable and he has a good prognosis. So many others don’t however. We have met many people over the last month whose children are back in hospital with their second bout of cancer. One of them was first diagnosed with cancer when he was 16 days old; he is now only 7 months and the cancer has returned. My heart goes out to all of them, and they inspire me, who are facing their difficulties with tremendous strength and courage.

We count ourselves as lucky that we are in such a good hospital, and that our country’s health care system means that we don’t have to pay for treatment. We have a huge support network consisting of friends, family, and people we don’t even know. We are lucky because Manny’s cancer is curable. We are most lucky because we have such a gorgeous little boy. Manny has been so good through the intrusiveness of all the tests before being diagnosed, and now through all his treatment. He is a little champion, and is an inspiration.

The Cancer Council holds an annual event: Relay for Life, a 24 hour fundraising walking event. I am taking part this year and need donations! You can do so by visiting my fundraising page and then clicking “Sponsor Me”. Anything is highly appreciated.

I’d love to hear from you especially if your child has had Hepatblastoma, or if you had it when you were younger.

On the Shortness of Life

It is not that we have a short space of time, but that we waste much of it. Life is long enough, and has been given in sufficiently generous measure to allow the accomplishment of the very greatest things if the whole of it is well invested.
—Lucius Annaeus Seneca, translated by John W. Basore.

The Craft and Trade of Bookbinding

The Lonely Tree

I have always appreciated the multi-dimensional aspect of bookbinding. It is neither solely a creative outlet of beautiful works of art, nor solely a trade producing an object that must be usable and durable (and saleable): for me it us both of those things at once. I love that as bookbinders, we are creating something that is nice to look at, to touch, and to hold (and listen to: I love the sound when I snap a book closed, or the sound of a finger tapped on a closed book’s cover, dok dok dok), but also serves a definite purpose as an information repository, a place to pour out one’s heart through words or pictures, or as a vehicle transporting one to another world via a great story—books are there to be used.

In days gone by, bookbinding by hand was a big trade, with lots of workers all performing separate tasks in big factories. All this has now been mostly superseded by some amazing machinery (and amazing people who run them), and has now become a niche trade with only a few companies around maintaining the old ways, some of whom also maintain the old books. Mostly, hand bookbinding has become an art-form, a hobby for people like me and perhaps you. Nevertheless, I believe it is still important that we who practice this trade–craft as a hobby learn the skills, techniques, and methods of traditional tradesmen and women.

Since starting my Bookbinding and Restoration course at Sydney Institute of TAFE, this trade aspect of bookbinding has really been made apparent to me, because that’s how bookbinding is taught: as a trade. So we learn all the ‘right’ ways to do things, practices that with practice (!) will become second nature, and will result in a high-quality, well made book. We are not really given much opportunity for creativity (unless you’re a rebel like me and use random bits of waste paper as end-sheets!) but it is only the first semester of the course. I am not complaining. As I mentioned above, I think it is a good thing to know all the rules and the right ways of doing things—after all, doesn’t one need to know the rules to break them?

I yearn for the chance to create a book beautifully bound in leather with a beautiful design tooled into the covers. I also yearn to create books that are well-made and that will last. I look forward to learning the more decorative skills, but I look forward with as much eagerness to learning better bindings, and to bettering my skills.