It was nine months last week since Jared passed away.
The length of a full term pregnancy.
Half of Elise’s short life.
Nine months of grieving in which life seems on one hand to have frozen still and on the other to have continued at a frenetic pace. Elise is running, climbing, learning new words every day. She is most at home stomping around the garden in her gumboots, chasing balls and bubbles, chattering away to herself. She has the charm of her father, the frown of her mother and attention to detail that exceeds either of her parents – no stray sequin or imperfection in the wooden floor goes un-inspected.
Jared was a great story teller but in many ways, in October 2013, it was Elise’s story that captured the hearts of thousands around the world and the interest of the team at Creation Films. They approached us at that time keen to tell the story of Elise (or baby Noel as she was known then) and subsequently spent many hours with us, documenting the journey of Jared coming to meet his little girl.
The result is “Waiting for Baby Noel”, a 47 minute documentary capturing that precious and nervous time in our lives when we were uncertain whether Jared would survive long enough to meet Elise. It is a story told mainly from Jared’s perspective but also involving quite a few others who were central to our story at the time. It is a wonderful legacy for Elise but also a tribute to the heartfelt global generosity that we were blessed with, enabling Jared to embark on the treatment that would eventually give him the precious months he had with his little girl.
The documentary will premiere on Thursday August 20th at the Capitol Cinema, 610 Dominion Road, Auckland. Screening times are as follows:
Thursday 20th August at 7pm
Thursday 20th August at 8.30pm
Sunday 23rd August at 7.30pm
It will later be available online – details to follow – for those outside of Auckland or unable to attend. The cost of the tickets has been kept to a minimum; it covers the hire of the venue and helps Creation Films recoup some of their production costs.
You can view the trailer for the documentary and purchase tickets via the link below
Hannah and Elise
Today marks three months since Jared passed away; words seem inadequate to describe how much we miss him and the love, laughter, wisdom and perspective he brought to our lives.
Elise will turn one on January 17th, just over a week away. She is an absolute joy, smiley, chatty, into everything, cruising the furniture and looking like she will walk any day; Jared would be so proud of her! She brings immeasurable light to every day and we are so thankful for the gift that she is, and the fact that Jared was able to enjoy her first few months.
We promised updates regarding the book that tells Jared’s story, as told to David Williams through a series of interviews in the final weeks of his life. We are thrilled to announce that the book has been accepted by a major international publisher and will most likely be published in October this year, which will mark the one year anniversary of Jared’s death. It will be a frank and powerful account of his extraordinary life, a rare insight into the thoughts, conflicts and dreams of a young person wrestling terminal cancer and a beautiful legacy for Elise to read one day. Jared always hoped that his story would be captured in a book and we are excited and incredibly grateful that this one last dream is becoming a reality.
We will keep you up to date with developments regarding the book.
Hannah, Elise and family.
Jared’s funeral will be held on Monday 13th October at 2pm at the Westgate Baptist Church, 67 Hobsonville Road, West Harbour, followed by afternoon tea.
For those unable to attend, we will be live-streaming the service via the following link which will also allow people to view the service for up to 30 days.
We are so grateful for the outpouring of love and support and the many heartfelt tributes to Jared that have been written in the past couple of days.
Hannah, Elise and family
Jared passed away this morning, peacefully, at home, surrounded by love. This final blog post was written on 25 September when it was clear to Jared and all close to him that his time was nearing an end. To those who have followed this blog from the beginning or picked up along the way – thank you for journeying with Jared, for your camaraderie and encouragement. Sharing this journey gave Jared more purpose and fulfilment than can be expressed in words. We are so proud of him in every way and grateful for the immense love he brought to our lives. We will miss him always. Hannah and Elise.
On Wednesday 8th October 2014, I passed away at 1125 hours.
The time leading up to my death was mixed with days of feeling well and days of feeling pretty terrible. I am thankful that we only have to go through this process once in our life. I would have liked to have written more leading up to my death but the reality was that the medication and my state of mind made it impossible to write coherent statements and turn them into phrases and paragraphs.
One of the things that has happened since I became palliative was I received an offer of someone to write my book for me. David Williams was a friend of a friend, he approached me while I was in the hospice and was very enthusiastic about the process. I spent one hour a day for the better part of three weeks being interviewed, telling my story, in such that I hope my words are not lost. David is an author, previously a reporter, a PhD graduate who embraced this opportunity and I am forever grateful to him for doing so. During this time we traced the highs and lows of life but in particular the last 5.5 years of my diagnosis and, building on my blog, he is preparing to publish a book. This has been the focus of a lot of my energy in my final days. My hope is that this book will be an accurate representation for Elise to understand the life that her father has lived, and, secondarily, for those who may or may not be interested, exploring the highs and lows that someone might go through when diagnosed with cancer and navigating the subsequent journey. Those who read this blog may also find this interesting and Hannah will update the blog to advise when it will be published and how you can obtain a copy.
The second challenge of palliation has been balancing time with others and time with ourselves. As we have had a large number of requests for people to visit and spend time with us, this had to be weighed up against the limited strength and energy that I have had available to offer people, as well as the time that I needed to spend with Hannah and Elise. It was amazing to see the day to day fluctuation of my energies; some days I have felt rather well while others have been extremely low in energy. Those final days were progressively spent with family and close friends until family alone was the priority and all I had energy left for. The final stretches of palliation were characterised by massive amounts of fatigue where I did not even have energy for those who were closest to me. I routinely got to the point where I wished my time was up and wondered why my body was still alive when it felt like it didn’t have the energy to do that well. Why it bothered to hold on for longer than I would have liked is a question I do not have an answer for. The augmentation and palliation of drugs was critical at keeping me going and preserving my sanity.
For those who have followed this journey I thank you for keeping me company and offering encouragement when you did. I appreciated your support, although I probably did not express that appreciation enough. It was nice to know that people valued the words I had to say. My time now has come to an end and apart from occasional updates regarding the book etc. nothing further will be written. I hope God has blessed you through joining me on my travels.
God bless, for the final time. I am checking out.
Getting sick is a lot like riding a train into a dark tunnel. Its dark and a bit (or maybe a lot) miserable when you first ride into it, but in the distance is a light. That light is what you are targeting, it is what represents coming out the other end, getting better.
When you are palliative, there is no light in the tunnel. You go into the tunnel, become enveloped by darkness, but don’t have anywhere to go, no light so to speak. Each day is a progressive deterioration on the day previous, there is no hope that I’m going to get better. The focus is instead keeping me as comfortable as possible.
Its a bit of major mind shift, because every other time I have been sick, there has been a light. Sometimes dim… but still a light.
Since I last posted I managed to get discharged from hospital into hospice care, with the goal to move from there to home in the longer term, which after two weeks, I also managed to achieve.
One the outstanding issues that was preventing me from moving to hospice in my last post was my ongoing biliary sepsis. With unclamping the PTC tube and antibiotics I have managed to recover from that.
The focus in the hospice was getting myself into a manageable space where pain etc could be managed from home, which I now too have achieved. With so much water having passed under the bridge, I apologise for the lateness of this blog post. I now find myself at home spending my last days with my family, which has been great after close to 7 weeks in hospital and hospice care. I now have my family around me all the time, so they aren’t ‘scheduled’ visits, and it is much nicer to be in a familiar environment.
As alluded to at the beginning of the post, being palliative is quite the change in outlook and mindset. What it essentially boils down to is that I am now waiting to die.
I don’t necessarily want to delay that for as long as possible, I’m not sure what I want to be honest. I’m helpless at the moment. Death will come to me as quick or as slow it decides on it’s own terms.
I know I’m not eating enough to sustain life and that will catch up with me eventually…
I know i’m keeping up with my fluids…
I know that my body is disappearing in front of my eyes, slowing deteriorating bit by bit each day…
I know that death creeps around the corner waiting to pounce.
I know that all of this is beyond my making. Maybe death will pounce next week, maybe in 5 weeks time. He/she will choose their own time.
In the mean time I will enjoy what family time I have, I will catch up and see friends old and recent. I will enjoy what time I have left for whatever blessed time it is that I have it for.
For those following this journey, short or long, I don’t know how much of it there will be left. I will try to update when I can, but the reality of it is that as I deteriorate, it will be harder to do so. I am already on a lot of drugs that dull the mind, it can make writing harder, and make concentration harder still. I want you all to know that I am not unhappy, but content. I am taking each day as it comes, absorbing what it has to bring me and trying to make the most of while I can. This is not to say there aren’t hard days. Hannah and I have had our fair share of shedding tears as our reality comes to home to bite, but that is normal. Who wouldn’t cry when death is just around the corner, but, on the whole we are both at peace, preparing ourselves for what the next chapter will bring.
I am not afraid of death, maybe partly anxious about it’s mechanism, but I have a faith that reassures me however it happens, I will be going to a better place, one where death and suffering will left behind and the resurrection of Christ will become the most apparent it has ever been to me.
Until next time….
In what seems to be a long time since my last post, a lot of water has passed under a very small bridge. I came home on leave with the PTC drain in and went back to hospital so that I could have the stent inserted under a general anaesthetic. This procedure happened the day after I was readmitted and it turned out to be the most painful day of my life. What should have been a 45-60 minute procedure ended up being 3.5 hours long. When I woke up from the general anaesthetic I was in agony. I was in so much pain, I don’t even know how to describe it. The post anaesthetic care team did their best to give me analgesia sufficient to control my pain and they were unable to do this. Over the course of a day, I had 3 x 10mL boluses of Ketamine as well as going through > 2500mcg of Fentanyl. It was established that I needed an epidural but they also needed to establish that there was no other cause for this new pain so it was decided that I would have a CT scan to rule out complications. Fortunately there were no new or concerning features on CT. So I returned to the post-operative care unit and an epidural was placed. My experiences of ketamine boluses were also terrible; its auditory and sensory hallucinatory effects made me feel really trippy and I would not wish that sensation on anyone. Tuesday officially went down as the most painful day of my life. The following two days not much changed with my regimen for pain relief and a trial stop of the epidural occurred on Friday. Unfortunately that too was unsuccessful.
On Friday, Hannah and I, together with the palliative care and oncology teams, had some long and hard conversations around when would be appropriate to stop aggressively pursuing quantity of life. We agreed that whilst I would still happily be treated for small things, we were not going to pursue treatment that would forsake quality of life. My oncologist was of the opinion it was unrealistic to go back on chemotherapy as it was evident the cancer had stopped responding before the period of non-treatment and my overall fitness and health had deteriorated so rapidly over such a short period of time. Based on this we came to the decision that I am now for palliative care only. From now on, our decisions will be based on things that influence my quality rather than quantity of life. How short or long that is is anyone’s guess. My priority is to get home if I possibly can as that is where I want to be.
Going on in the background of all of this has been ongoing fevers that we have yet to identify a source for but whose guilt most likely lies in biliary sepsis. In order for me to get home, the first hurdle is to treat this successfully.
We always knew it would come to this at some stage, but perhaps not so soon. For some reason it always seemed to be a few months down the track. For whatever reason I have managed to outlive anyone’s predictions for the past five years. But now the chickens seem to have come home to roost.
I intend to keep blogging through this process as I document the journey to death and I hope and pray that it gives Elise something to read so that she can get a glimpse of who her father was.
Until next time…
During this current admission I had a CT scan (that I mentioned in a the previous post) to assess where things are at with regards to my bowel obstruction and the current issue of obstructive Jaundice.
What I didn’t mention is what it found with regards to my cancer, and unfortunately, its not good.
There is significant progression of the liver disease over a very short period of time. The dominant large lesion is in segment 7 of the liver has doubled in size and there are multiple new lesions in the 0.5-1cm range throughout the liver, with existing lesions also increasing in size. There is also further development in the lymphadenopathy around the renal arteries and in the general retro-peritoneal area, including increasing lymphadenopathy around the hilum of the liver. The infiltrative disease around the liver could well be responsible for the biliary obstruction that I have, and may have been responsible for the duodenal obstruction as well.
Basically its pretty bad. I have missed three rounds of chemotherapy now due to the complications and hospital admissions over the past month, and that is likely to be a big contributor as to why my disease has progressed. However, it is of such rapid disease progression that my oncologist tends to think that it may have starting progressing under chemo, even thought my last scan was stable (and relatively recent).
So what does all this mean???
Well, basically it means I need to get back on to chemotherapy as quick as possible in the hope we can slow down the growth. If in fact regrowth was beginning to happen whilst on chemo, it suggests that chemo is losing its efficacy, and that means i’m starting to run out of options.
In the mean time I have to get past the current main issue, which is my biliary obstruction.
On Thursday I had my ERCP under a general anaesthetic and it unfortunately it wasn’t successful as they couldn’t get access to the ampulla at all due to the duodenal stent being in the way. This means that I have had to go for a PTC drain insertion best described in the video below rather than by me.
This procedure was due to go ahead on Thursday afternoon until I spiked a fever of 39.0 degrees. It was deferred and I was started on IV antibiotics in case this was choleangitis. Choleangitis is an infection of the biliary system and can be a very rapid onset sepsis and can lead to septic shock. The fever I had was absolutely miserable with rigors and lasting for about 5 hours. I haven’t had one since thankfully, and the thinking now is that instead of choleangitis, it was probably a septic shower as result of manipulation around the biliary system in the failed ERCP. Fortunately the latter as a diagnosis is much better than choleangitis.
On Friday I went for my PTC insertion under light sedation and they got as far as getting the drain into the duodenum via my liver. It was a difficult access just because of the location of the left lobe of my liver relative to my ribcage, so they weren’t able to get the stent in. The plan is to go back under general anaesthetic and put the stent in so that I have internal and external biliary drainage. I am currently biding my time in hospital until that can happen early next week and then all things going to plan start chemotherapy the week after that.
So as you can see, there has been a lot happening over the past few days, both in terms of medical management and developments, as well as the processing of the CT report and what that actually means. What it really means is that I am getting down the last ditch therapies now for treating this cancer, and it has established that if you give it an inch, it will take a few dozen miles with that liberty. What treatments are left as options are really speculative, and whether or not I will get response is equally as speculative. Hannah and I have processed this and understand that it means I am unlikely to make Christmas this year, and my time could be up sooner rather later as the decision to go palliative is getting closer and closer.
In someways this hasn’t been as hard to process as you might think, and I think that is in large part due to the fact that I have had the better part of 5 1/2 years with this illness to do this processing. It is however, a brutal shock back to the reality I face, as it has seemed like the past 6 months has been a holiday, as we have seen Elise’s first few months of adventures in this world. It has been an awesome escape from reality as we watch new life blossom…
But now the holiday is now over, and I have to get back to the business of dying. I plan to do that the best way possible, as not everyone has the privilege of anticipating their own end. So often people’s end times are full of regrets and catching up with bucket lists. I don’t have either of those, I am grateful for the life I have lived, I have been given extraordinary opportunities to embrace it in all its beauty, God has blessed me enormously. I plan to enjoy every last moment, savour its delight and its low times. It’s all part of the package.
Until next time..