After a three month publication cycle has finished, I am now free to post the article that I wrote in the OHBaby! magazine for their Autumn Issue. What follows is the text from the article, and then a link to the PDF of the actual 5 page spread so that you can see the photos and the layout. The brief was along the idea of how to communicate family values to your children, with my particular circumstance adding a unique perspective on it.
Communicating and teaching your children your family values can be a challenge at the best of times; achieving this when you know it’s unlikely you will survive to your daughter’s first birthday seems next to impossible.
Five years ago, I was diagnosed with metastatic bowel cancer, and after surgery and chemotherapy, I relapsed and became terminal. My life trajectory seemed to be mapped out, shorter than anyone would ever hope for or expect. But, for reasons that remain a mystery to both me and the medical profession, I have continued to live, while knowing that at any moment, I am only a heartbeat away from finishing my journey in this life.
For my wife Hannah and I, the decision to have a child was complex; It was prompted by the desire to start a family and cautioned by the implications should we be successful. In the end, we knew we would never regret having a child but there was plenty of room for regret had we not even tried. It breaks my heart that bar the miraculous, I will miss most of my daughter’s childhood. I will not get to see her flourish as a person, and I will not be able to walk her down the aisle at her wedding. It is with that breaking heart that I will do my best to leave her a legacy of who I am. I may not be able to leave her with memories, but I can leave her with the values I embrace, so she can appreciate who her father is.
I cannot create a pithy saying or a three-word catch phrase to live by. Life, to me, seems far too complex to be abbreviated to such small word counts. Instead, I want to offer you a sense of identity, a sense of purpose, and an understanding of where you came from, so you can then determine where you will go. The world is your oyster, to make of it what you will. My hope is to give you the opportunity to be the best you can be.
Having said this, ultimately any principle or ideal must still be communicated in words or they remain in the realm of the ethereal, never having concrete relevance. To that end, here is an attempt to communicate to you what matters to your family – as words to live by, and hopefully words to die by.
What does the Lord require of you? To act justly and to love mercy and to walk humbly with your God” Micah 6:8.
As a family of faith, this verse expresses what matters most to us. Elise, we want to encourage you to live a life of mercy, justice and compassion. We want you to love others and to learn to put them first, especially those who are less fortunate than us. This is how you can make your mark on the world, by being part of the bigger picture of humanity, and this is how you can honour your loving God.
Read, learn and travel.
Read widely and never stop learning. Travel to both the developed and developing worlds. Ask questions, challenge the status quo, and discover that life in middle class New Zealand is only how the privileged 5% of the world lives. Your mum and I believe that with this privilege comes responsibility; to use our time, wealth and skills to help others. Our worldview, narrow or wide, is shaped by our upbringing and education. Reading, learning and travelling will broaden your horizons, develop an understanding of life and grow a respect for people of all faiths and ethnicities.
Pause, reflect, breathe.
Life will be busy but we should always take time to pause, to reflect, and to breathe; to look back on a journey past or ahead to a journey planned; to contemplate the complexities of politics or the simplicity of a plate of food. We hope you will learn to appreciate the small things, so you then can appreciate the larger things even more.
It’s okay to cry when you are sad, and rejoice when you are happy. Life will always be a contrasting kaleidoscope of experiences and emotions; taking time to drink them in gives perspective, wisdom, and an understanding of yourself and your place in this world.
Elise, I won’t be around to remind you to say please, thank you or sorry. Instead, I will try to leave a legacy that instils a sense of compassion and respect for others where pleasantries will naturally follow. I won’t always be able to comfort you when you’re sad, or reassure you when your confidence is low, but I hope you know that I will always be there for you, even when I am physically absent.
I hope that in knowing who your father was, you will be able to choose who you want to be…
As an addendum, I am aware I haven’t posted many updates lately, but will plan some catching up in the next few weeks. Also, for those who do subscribe to the OHBaby Magazine, Hannah has written an informative piece on neonatal screening in the winter edition that went on sale today. 🙂
Until next time…
Peeling off the sticker takes far more effort than it should. The numbness at the end of my fingers mean that it is more of an exercise in visual acuity than based on what I can feel. I rely on another sense entirely. Finally, it comes free, and out of habit, I rub the apple on my shirt to give it a clean, feeling the tenderness of my bruised subcutaneous tissue from the morning’s Clexane injection. I crunch into the flesh of the apple, wincing as the acid and texture burns against the epithelial cells of my mouth that have eroded from chemo. I should probably clean my teeth, but the white froth I spit out is always streaked with red, from gums that can’t repair themselves as quick as the chemo destroys them. I decide to have a coffee to wake me from my drug induced slumber from the night before, insomnia plagues me, I’m sure my pituitary has given up trying to regulate my diurnal rhythm. My hands loosen the milk bottle cap, the sensation is reminiscent of trying to rotate a cog that won’t budge, as all the subcutaneous tissue of my hands and feet are inflamed, swollen and angry looking.
I sip my coffee, I take a breath, and I remember I’m still alive to experience such things.
When I regale my life in such terms, I realise how quickly and to what degree the effects of chemo impact my life. It is very easy to create a tally of all the things that aren’t what they used to be before 85 rounds of chemo, and then count them as things to lament. I have long since passed the prime of my life, even though it should be ahead of me. Yet I don’t mourn these things, if I were to do so, I would quickly spiral into darkness, and so I choose not to. In someways 85 rounds of chemo have meant that a routine that has become imprinted into my life. A miserable routine yes, but routine somehow numbs its effects.
Furthermore, the fact that I feel at all is a gentle reminder that I’m still alive, and for now, that is what counts.
The three most recent rounds have become short sharp jolts of nausea. The recovery has improved since stopping Oxaliplatin, but the rounds, for reasons I have given up trying to fathom, have been rougher on the body. The 10th round was a revisit to 8 hours of hiccups, something I haven’t had since the first round of Avastin. Hiccups are surprisingly exhausting when they spasm the body in paroxysms of convulsion every few seconds for the course of a day. The exhaustion, seems to linger for longer than it should. The most recent round chemo has also seen my hands feet become particularly inflamed. You can see in the photo just how red my hands are and the skin that is peeling off.
The 5-Fluoro Uracil takes the blame for that one. Its a well documented side effect that I have managed to avoid for the most part. Everyday tasks like loosening the cap of the milk becomes disproportionally sore, not enough to stop me opening it, but enough to make me take notice. Fortunately it only lasts a few days, and has improved dramatically as I type.
My CEA continues to remain stable, as does the CT scan from about 6 weeks ago that I have failed to update specifically on this blog. All this means that I will continue with Avastin and 5-FU until either toxicity or non-response. Its much the same scenario as when I was on FOLFIRI for 66 rounds. The cost will continue at around $6,000 per round, but there are rebates that kick in from round 11 onwards meaning that the final cost will be closer to $2,500 -$3,000 per round. In retrospect, one might think that the fundraising target of $60,000 last year was naively low, although at the time it seemed impossibly large. What this means is that we have the luxury of continuing with treatment for the time being. It also means that if the Avastin continues to work, we could be in a position to ultimately choose between ongoing cost and ongoing life. In someways, if the Avastin were to stop working, it would make that choice null and void, and ironically easier.
Thats a bridge we will cross when we get to it.
This was a somewhat elongated update of my normal chemo yarns. The next round is going to be deferred by a week as Hannah and I will take on the roll of being camp doctors to 5000 youth at an Easter camp down at Mystery Creek, and then we head to Queenstown for a 7 day Autumnal escape which I am looking forward to.
Until next time…
Earlier this year I was contacted by the editor of OHBaby! Magazine to write a piece for their next issue. OHBaby! is a quarterly magazine targeted at parents of 0-5yr olds that covers everything from issues around pregnancy and parenting tips to learning and development. It also reviews baby accessories for which I have recently discovered there are a plethora of.
We have been contacted by many media outlets of varying descriptions for interviews or stories on our situation. On the whole, we have decided to decline most of these requests because publicity for publicity’s sake is not something we want to get caught up in. OHBaby! however came across very differently. The editor, Ellie Gwilliam, came to visit one morning to check us out. Her request, was not to do a story on us per sé, but to get me to write a piece around creating a family ethos, and how you communicate that to your children. I am obviously in a rather unique situation, and such an idea requires thought and contemplation to address the apparent difficulties of doing this when I am absent. Ellie thought this was a valuable perspective.
The reason we went ahead with this was because this was not just another story, but a chance to actually write and contribute in such a way that will hopefully enable other families to think about how they communicate their values to their children. Furthermore, we found Ellie to be great to work with, with her sensitive manner and clear vision of what she hoped to achieve.
The article itself is unfortunately not fully available online unless you pay to view it, or have a subscriptions to the magazine. It went on sale on April 7, and will be available for the next few months. HERE is the link to the online teaser in lieu of the actual magazine or subscription, or you can click on the image above.
Otherwise, you should go buy the magazine instead. 🙂
Until next time…
After 6 rounds of FOLFOX and Avastin, it was decided that the toxicity that was associated with the Oxaliplatin was starting to get too much, and so round 7 and 8 were only Avastin and 5-Fluoro-uracil.
I have probably lost about 50% of my sensation to light touch at the end of my fingers, and the effects of Oxaliplatin can continue to worsen for a period of time after stopping. Those effects are also cumulative with each round and generally considered to be irreversible. The irreversibility is perhaps a worst case scenario, as when had Oxaliplatin 5 years ago, I got to the point where I couldn’t touch type or do up buttons without looking at what I was doing, but after about 6 months I had recovered at least 95% of that sensation back.
The sequelae of this change in regime are twofold. Firstly, chemo should be much more tolerable. Oxaliplatin was the most toxic of the three agents I was on, and it was a big reason why I had to stop work last year; it took longer to recover from, and I never rebounded back as well between rounds.
Secondly, there is a real risk that response to therapy will change, and not for the better. There is every possibility that the response that was demonstrated on the last CT could have been due to Oxaliplatin, or the FOLFOX/Avastin combination. Stopping it, and continuing on 5-FU and Avastin alone may very well have a much reduced efficacy. This is something that we won’t really know for a few more rounds. For the time being, my CEA levels continue to slowly trend down, indicating that after two rounds of only Avastin and 5-FU, there isn’t a dramatic reversal in fortune. I think on first principles, its safe to assume that in the absence of Oxaliplatin, I am on a less effective treatment, how that actually works out in reality is something that only time will tell.
Overall, the last two rounds of chemo have been an improvement, although I haven’t recovered as quickly between rounds as I might have expected in the absence of Oxaliplatin. Hopefully over time this will improve.
This week we are down in Dunedin visiting Hannah’s parents and family and enjoying showing off Elise. She was well behaved on the flight down and seems to be adjusting to the somewhat abrupt change in temperature at the other end of the country.
In other news, I have had a CT recently which showed further promising results, of which I will go into detail in another post once I have cast my own eyes over the report and images.
Until next time…
For those of you haven’t yet seen the 20/20 story that aired on Thursday night, you can do so by clicking on the 20/20 image.
Hannah and I would like to thank the 20/20 team for their great work over the past few years, their non-intrusive manner, and the way they construct stories that reflect our journey well. We think they did a great job at putting the story together, and we just want to acknowledge all the work they have put into it.
I thought I would also put up a series of links to other media appearances over the past few months so that they are all found in one place.
First was the NZ Herald story that featured on the front page shortly after our Give A Little campaign on October 24th:
and a subsequent follow up on October 25th:
The Dominion Post also did a story which appeared on Stuff.co.nz
Then there was also The Daily Mail that picked up on the story a few days later (and I might add a very comprehensive and accurate account given that we didn’t speak to them at all).
The Give A Little team also wrote a nice summary on their site as this was one of the most successful campaigns that they had ever seen.
There was another appearance in the Otago Daily Times in December after a friend of ours (Anna) was able to organise a brand new Audi to be transported from Palmerston North to Dunedin when we were down there for Hannah’s brother’s wedding. We were given the car to drive for the time we were down there. I have to say, the effort involved in organising that was very impressive, and all done without me knowing. I woke up to hear someone was at the door, and Armstrong Prestige were there ready to hand me over the keys, along with a few cameras as well.
Once Elise was born, we did a follow up story with the NZ Herald as an acknowledgement that their first story was responsible for at least $50 000 dollars of the fundraising that happened back in October. We wanted to let people know how it had made a difference, and that I was able to make the birth of Elise.
After all of that, we have had a number of approaches from the media that we have decided in large part to decline, as we don’t want publicity for the sake of publicity. We also want to protect Elise, as she is yet able to consent to such exposure, and her privacy is for us to care for.
This post is about consolidating the media links into one easily accessible place, and to acknowledge the work that has been done by the media that has both represented our journey well, and also helped contribute to the money raised that has allowed me to continue with treatment that so far seems to be working.
Until next time…
This most recent round of chemo was the 6th of FOLFOX and Avastin, and was marked by a few significant points. Firstly, it was the 80th round total of chemotherapy that I have had. I remember after 20 rounds of FOLFIRI thinking that there was no way I was going to be able to make it through another 20 rounds. As it turned out I managed to cope with 66 rounds before it was stopped, and it was stopped because of non-response rather than toxicity. So 80 rounds total of all my chemotherapy is quite an achievement, and not something I would recommend as an overall lifestyle to others.
The second point of significance for this round was that this was the first round of chemotherapy as a father. Chemo renders me fairly useless for a few days at the best of times, but usually that has been something that is easy enough to deal with. I can go to bed, sleep it off, and Hannah just feeds me small amounts of easy to digest food for a few days. With Elise now part of the household there are increased responsibilities that are much more challenging to uphold over those few days. We have been fortunate enough to have been inundated with support from friends and family, and literally haven’t had to cook a meal yet since Elise has been born… But there are a few days that parenting for me, meals aside, becomes a next to an impossible task. Days 1 – 3 of chemo basically consists of having to give Hannah all the parenting responsibilities and I sleep through most of it. Days 4 – 5 are when I start to feel better, but its amazing how just a small amount of pacing whilst trying to settle Elise can leave me exhausted pretty quickly. I am a wannabe parent at this time but with little value to add to the process. Come Day 6 onwards, I’m well enough to resume my normal parenting responsibilities.
There are undoubtedly challenges to being a parents at the best of times, but we have the added complication of chemo punctuating our lives every 2 weeks. We always knew that was going to be the case, and I don’t see why it should stop us from doing our very best. It hasn’t stopped me graduating medical school, it hasn’t stopped me working as a doctor for 3 years, and it hasn’t stopped me from living my life. I refuse to let chemo stop me from being the best father that I can be.
Having your daughter fall asleep in your arms, watching her find peace in your embrace, is one of the magical things on this planet. A completely dependent little human relies on us as parents, and us alone to provide for all her needs. She is the cutest little baby in the world (as seen in her parents eyes) and there is real joy in nurturing her through the early stages of the newborn phase of life. There is delight in watching her open her eyes and having her stare back at you.
…And when she does that, I imagine that she is forming memories of me, her father. The rationalist in me knows that isn’t the case, the romantic wishes it is. Its not an easy thing knowing that unless I survive for years yet, she will only ever know her father through photos, writing, and stories.
…I hope she will also know how much I love her.
Until next time…
On Friday the 17th of January, at 6.55am, we moved from being a family of 2 to a family of 3. In what was an extraordinarily fast labour for a first time mum (2hrs 55min), Hannah and I were proud to introduce Elise Alexandra Grace into our lives. She weighed in at 3.865kg (8 lb 8oz).
Her arrival into the world was uncomplicated and Hannah and Elise are doing really well. The ensuing few days have been the baby moon phase of parenthood. We have really enjoyed watching Elise adapt to her new outside world and she is proving to be (so far) a good sleeper and a not-too-demanding consumer of milk.
As we adapt to this new phase of life, we would like to thank everyone who made it possible through their incredible generosity. My most recent CT scan showed good news, and that the treatment is successful (insofar as there is no disease and a reduction in the tumour burden of existing disease). As I reflect on our circumstance I had a realisation:..
It was in the context of gestating new life that I pursued more of my own life.
My daughter is literally the reason I am still alive…
And I will be forever grateful to her, and to those who enabled this to happen.
We now move forward into a new phase of life, one that will no doubt include sleepless nights, but filled with tears of joy and an overwhelming sense of pride in who our daughter has already become.
I have in the interim postponed my next round of chemotherapy, which will be next wednesday. It will be my 6th round of Avastin and FOLFOX, and my 80th round total. Its not clear why I have lasted as long as I have, but after meeting Elise there is now continued impetus to try and survive for even longer again.
Whilst today we featured on the front page of some news papers (to acknowledge and to thank those who contributed to helping us make this day a reality), we will be declining further media requests as we feel this is an important time for the family as we grow and adapt and give Elise the privacy she deserves.
Until next time..