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Our deepest heartfelt gratitude

October 24, 2013 25 comments

How do I put into words something that cannot really ever truly be described…

The past 2 1/2 days has allowed us to witness to what has been the single biggest act of generosity we have ever seen…

There are no words that can adequately express our gratitude. The sheer scale of what has happened is far beyond our comprehension.

When our friend Anna set up the give-a-little page, we thought it would be months before we reached our target. It instead became a sprint to the finish taking only 7 hours from when it all started. The experience was the modern day equivalent of a telethon with the constant pressing of the refresh button, watching the numbers tick by. This was facilitated by the literally hundreds of shares on Facebook and Twitter, with friends of friends of friends keeping the momentum going. Once the target was reached, it became readily apparent that the giving was not slowing down.

100,000 in 30 hours….

140,000 in 52 hours….

The scale and rapidity of the charity clearly impressed a few people, with both the NZ Herald and the Dominion Post picking up the story. When the Herald interviewed me, I had no idea that it would literally be on the front page the next day. It is a testament to the goodwill and generosity that exists in our society, and to be  honest, Hannah and I are completely overwhelmed. We are truly, truly lost for words.

It is with all of the above that Hannah and I feel we should state that we are no longer seeking to raise funds. We have been blessed incredibly, the seemingly daunting task of 60,000 for my treatment has been reached and exceeded. Not only will the treatment be covered, but the additional funds will go a long way to helping provide financial security when my income eventually stops and Hannah  takes time off work to be a mother. We also appreciate that there are still people who genuinely want to give that have not yet had the opportunity, so we will continue to keep the give-a-little site running for now, but it is likely we will close it sometime in the next few weeks instead of the 3 months we initially set it to run for.

To our family, our friends, and those we don’t know. We will be forever grateful for what has happened in the past 48 hours. It has brought us to tears and left us without words.  The reality of our situation unfortunately has not left us, and we will shortly jump back on this roller coaster that seems to have the highest highs and the lowest lows. Through your generosity I will start back on chemotherapy this Wednesday and Bevacizumab will be part of the regime. We hope and pray that it achieves that extra time that we so desperately want, that we might celebrate the creation of new life, before my own comes to its end.

May God bless you all as you have blessed us.

Until next time…

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Categories: Blog

Bevacizumab

October 22, 2013 34 comments

Jared and HannahOver the past few days we have been overwhelmed by the phenomenal outpouring of support, prayers and generosity. There have been so many messages that it is physically not possible to acknowledge each one separately, so Hannah and I would like to take this opportunity to collectively thank everyone who has contacted us during this time.

One of the decisions we have had to make over these few days is whether or not to pursue including Bevacizumab in my chemo regime. Of course if it were funded by Pharmac, then it would automatically be included, but since it isn’t, there are financial implications and funding challenges that need to be addressed if we go down that path. One thing that has become clear is that there are a lot people who are willing to help us fund this, as realistically, we can’t fund it ourselves. I personally have always been a little reluctant to fund a drug that does not change outcome, I haven’t seen the point in spending large amounts of money if the final result is still the same. However, in light of our change in circumstances and expectant parenthood, the timing of that particular outcome has all of a sudden become important, and I find myself re-evaluating that stance. Surviving for as long as possible is not so much about me anymore as it is about Hannah and our unborn child. With all of that in mind, we have decided to try and raise the funds for Bevacizumab.

This isn’t a decision we make lightly, and in large part it is in response to the overwhelming generosity of offers to help make it happen. To a certain extent this involves swallowing a probable misplaced sense of principle of not wanting to ask people for financial support, particularly when the outcome doesn’t change. It is when I reverse the situation and consider what I would do for a friend in the same circumstances that I can be convinced.

To that end, we have allowed a friend to set up a page on givealittle.co.nz in order to raise funds for my treatment. We are appealing to those who are willing and to those who can afford such a generosity, and place no expectation on anyone for anything. Hannah and I are truly humbled by the longstanding support and generosity of our family, friends, colleagues and people who follow this blog, many of whom we have never met.

For those considering donating, I feel it is important you know what you are donating towards, so here are a few salient points:

  1. Bevacizumab (Avastin) is a monoclonal antibody that essentially inhibits angiogenesis, this means it stops tumours from creating their own blood vessels for ongoing nutrient and oxygen supply as they grow. The overall effect of  this is a reduction in tumour growth. It is not a tumour killing agent, it is purely one that slows the growth down. This drug will serve to buy me time with Hannah and our daughter, nothing else.
  2. Hannah and I have spent this year saving money specifically in anticipation of the birth of our child and associated maternity leave. This was also anticipating the likelihood that my income could cease at some point. This isn’t enough to cover the drug costs and it’s need as originally intended still remains, particularly as my income is going to become less reliable.
  3. I am currently inquiring about cashing in my kiwisaver and superannuation under the “severe illness” clause. We can use this as contribution to the cost.
  4. I will have a CT scan 3 rounds into the treatment to establish response so that further money isn’t spent if it is proving to be a futile effort.
  5. The cost of the treatment for 10 rounds will be about 6,000 dollars per round, meaning a total of 60,000 dollars.

This is not a small amount.

It is with a humility of spirit that Hannah and I post this, and a gratitude that extends beyond dollar value, towards the good will and generosity that has touched us over the past few days.

Click here to contribute.

 

Until next time….

Categories: Blog, Cancer Update

Oncology 20.0

October 19, 2013 48 comments

This journey with cancer has really highlighted the joys and disappointments of what life can bring. More recently, the joys of Hannah’s pregnancy has dominated our life. Setting up the baby room, feeling the kicks of our daughter, and choosing her name has been such a great experience, one that has  become even more amazing when juxtaposed against our circumstance and the finite lifespan I have….

I had a CT scan on Monday, and the results from that have devastated us….

I have rampant, multiple new metastatic disease all throughout my liver, almost too much to count. I have new disease in my mesentery and a new nodule in the right apex of my lung. It would seem the absence of chemotherapy combined with the systemic immunosuppression that radiotherapy can bring has permitted the cancer to grow unrestrained.

This is the moment we have been dreading for 5 years and have been lucky to escape until now.

This is where everything changes.

I have a lifespan measured in months.

Hannah and I are gutted, the realisation that cancer is winning is like having a knife hacked into the deepest part of our soul. It hurts in a way that words cannot describe, it leaves us gasping for air, wondering if this is actually real.

The disappointment is compounded by knowing we have a daughter waiting to meet us, and for the first time, doubt has been cast over whether or not I will make that meeting. This is aggressive cancer, doing its best to kill me, to rob our child of their father.

We are devastated…..

Over the past few days we have broken the news to family, friends, and work colleagues, and we are all left speechless. Initially I cried each time I explained the news. Telling it to others is harder than hearing it yourself, but now the tears have dried up and I have become numb to it, no doubt a psychological coping mechanism. We have to prepare ourselves now for the next steps.

The details are yet to be finalised, but the plan is to fire one more salvo. I am going to restart chemotherapy consisting of 5-fluoro uracil and Oxaliplatin. The hope is that we can establish some kind of response in my liver, enough to buy some time. We are currently considering whether or not to add Bevacizumab (Avastin), a monoclonal antibody, into a the mix. This wont change the outcome, but it may mean we get more time. The issue with this  is that it is expensive and it isn’t funded by pharmac, I would have to go privately for it. Hannah and I are currently assessing our options to make it happen, because at the moment, time is the most valuable commodity I can buy. One, or even two months could make all the difference in meeting my daughter. Any time I have with her after her arrival is also worth the world to me.

I will keep you all updated on how things unfold this week, but there is no doubt that I have now reached the business end of my journey with cancer. Those who know me know that I have long since accepted my outcome here, now its all about timing that outcome the best way possible, for the sake of Hannah, and for the sake of a child I haven’t met, but love so much.

Until next time…

Categories: Blog, Cancer Update

Radiation 25/25

October 6, 2013 8 comments

The radiation has finished.

This post is in actual fact not a fair reflection of when the radiation did finish however. It actually finished two weeks ago, but the business of not working has interfered with getting around to post an update.

Overall, radiation struck me a lot harder than I anticipated. There was some nausea that was tolerable, but the main symptom that really took its toll was an indescribable fatigue. I have now been off work for six weeks. Initially that time off work was like an unexpected holiday, albeit one filled with the irrational excess of slumber required for sub-normal function, but as the days accumulated, it has a become a tedious monotony of fatigue, sleep, and boredom. Having enough energy to be bored, but not enough to sate that boredom is a subtle but effective form of mental torture. I am well and truly ready for a change back to how it used to be. It has only been in the last 4 or 5 days that I have been able to get up in the morning and feel like I can actually make something of the day that goes beyond TV and sleep.

At this stage, I’m not quite up to going back to work, but I anticipate that I will be able to get back to work next week (starting Oct 14). I am really looking forward to be able to get back to doing something I enjoy, and which in itself is energising.

In the next couple of weeks, I will also have a repeat CT to establish the effectiveness of the radiation, and how naughty the liver lesion has been in the absence of chemotherapy. The pencilled in plan is to start chemotherapy again on labour weekend, this time a combination of 5-FU and Oxaliplatin (FOLFOX), but this will be confirmed closer to the time and will depend somewhat on what the CT shows. The management of the liver lesion at this stage has yet to be established, but I suspect that a lot of that will depend on how responsive the retroperitoneal lesions were to the radiation, what the CT shows, and whether or not a further period of stability will need to be established on the altered chemotherapy regime.

For those whom may not have heard yet, as an adjunct to the baby news. Hannah is now (almost) 25 weeks along, and we are having a baby girl. Pink items have already started to become thematically appropriate, and the yet-to-be baby room has now advanced from a box room to just a room (with a nice new stroller in it)…. Its a work in progress.

Until next time…

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