This is the story of Jessica Nicholson, my wife and best friend, and her last 13 months on earth. Nobody has taught me more about living than she did, whilst dying. This is a summary of the events that happened as posted through our fundraising blog from February 2013 until March 2014.
I have collected all these posts and images into one place for several reasons, first and foremost for my kids, so they can know the journey their mom traveled and how much she loved them. But equally as important i want to keep the memory of Jess’s fight alive, I want people to learn from her story, so the incredible bravery she showed doesn’t go to waste. Many of us will face terminal illness, and will have a choice how to live our final days. Jess showed us a way that left me and many others changed. I think that’s all any of us can ask for, to have a positive influence on those around you, that echo’s long after you are gone.
This is my attempt to honour her bravery
Friday 7th February 2013
I posted this pictured with a caption as follows
“2 surfs, lamb on the weber, couple of cold ones, Rodrigues on the record player. A good start to the new journey.”
I had no idea what the following day had in store my little family, but i was thankful and present in the moment. i was starting a new job the following week, Jess and i were settling in for a Friday afternoon braai. Life seemed very on track.
Saturday 8th Feb 2013
What turned out to be the worst day of my life (and in a weird way the luckiest?) We spent the early morning on the beach with our kids, Joel and Anna. it was a beautiful morning. My mom was in town and looked after the kids in the afternoon while we attended a business meeting and then headed off for Jess’s good friend’s 30th birthday at a Beach Bar up the north coast.
When we arrived at the party, it was hot, humid and the music was pumping, too loud for both us. Soon after arriving Jess was not herself, she was unable to answer simple questions, couldn’t tell me what see wanted to drink. After having only had a diet coke, i knew something was not right.
After a bit of fresh air, she assured me she was fine and we returned to the pulsating tent for some food. Thats when Jess had her seizure. It terrified the life out of me. Her face screwed up, she tried to turn her head 360 degrees in spasm, her face went blue and i managed to catch her as she fell to the ground. This moment will haunt me till the end of my days.
I thought she had suffered a stroke and died. I was screaming at her to breath and her friends were rushing to her aid. luckily there were two people with paramedic training who quickly After what felt like an eternity, she began to breath and colour returned to her face. Only then did i notice the flashing lights above us and decided we needed to get her out of the tented area.
Once on the road outside, she seemed to be returning to herself, although she was unable to speak any sense. I still thought she had suffered a stroke. As the ambulance drove up the road, she started going back into convulsions and within seconds, she was having another full blown seizure.
The medics were incredible, calmed me down, managed to get a drip into her hand and immediately began administering a drug to stop the fit.
Once we were on the road to the hospital, he began asking questions about how this happened, what could have caused it. I had nothing. I felt so completely helpless and useless. So many questions were going through my mind, was she epileptic? was her drink spiked? is she dying? i couldn’t get the look on her face off my mind. I called her mom (who was on holiday in Cape Town) and told her what happened. That was the first time I broke into tears, i felt so helpless, like i had lost control everything.
These pics below are a few from that weekend and the days leading up to Jess’s seizure.
Sunday 10th Feb 2013
The neurologist finally arrived at 12:10am on Sunday morning. I had been waiting for 6 hours. Jess had since woken up and wanted to know what the hell she was doing in hospital. I was relieved that there was no obvious damage, she seemed very much herself, but she couldn’t remember much about the day.
Dr Ganie took us down to Xray for the CT scan and Jess went in. I sat in the hall and prayed her drink had been spiked.
The doc walked out and sat down next to me, calmly he told me i needed to be strong and that they had found an area of concern on her brain.
The worst thing you could ever hear.
Jess was still fuzzy and thankfully not too inquisitive although she did wake up around 2 am and catch me sobbing next to the bed. But she forgot by the morning, clearly her memory was being affected by whatever the hell this thing was.
Debbie (Jess’s mom) had since flown in from Cape Town and i took the opportunity to shoot to her house for a shower, i was still full of sand from the previous day’s events. As i arrived at the house my phone rang. Debbie needed me back at the hospital ASAP. My heart sank.
Dr Nad Govender was waiting and confirmed my worst fears. Jess had a brain tumour. I broke down outside the ward, once i was out of sight. It felt like my world had collapsed.
Monday 11th Feb 2013
At 10am they moved Jess from El Balito ICU to St Augustine hospital in an ambulance. i followed and battled to keep up on the 30 minute journey. Once we arrived at the hospital i navigated a labrinth of corridors and elevators to find Jess. C-ICU is not a joke, every bed has a dedicated nurse and about a million rands worth of equipment above each bed.
It was ice cold and quiet.
The MRI was scheduled for later that day.the wait was already eating away at me. i was just praying they had made a mistake.
We we were finally called to X ray, they shaved 10 patches in Jess’s head and placed markers to help navigate in surgery, based off the pics they were about to take.
Jess climbed into the machine and they locked the massive door. Suddenly there was a big discussion going on. Jess’s op was scheduled for Thursday and they didnt want to take images to early incase the markers fell off or moved. it was cancelled. we would need to wait another day.
It felt like waiting for a sentencing in a murder trial.
Tuesday 12th February 2013
Did i mention it was my birthday yesterday? Not really one to remember thats probably why. All i wanted for my birthday was a clear MRI. Miracles happen… dont they? We went in for the scan mid morning, and it took a good 30 minutes. Thats R30, 000 for a picture of your head.
The MRI is so accurate that it allows the surgeon to plan his entry to the millimetre, thats why those markers cannot move.
Our kids were waiting when we finished up and it really lifted Jess’s spirits. They were really excited to see us and got a little loud, before long they had all the nurses oohing and aaaahhhing.
My brother Pete hate hospitals, and he looked ill standing in the x-ray reception, but quickly sucked it up when Jess came waltzing out of the MRi with a smile on her face, despite the fact that she knew she had a brain tumour. This girl is fearless!
Wednesday 13th February 2013
Debbie and i were sitting next to Jess at 9am when Dr Govender requested we follow him. Just Debbie and I. Poor Jess must have known it was bad news right away.
He took us to a computer and showed us the scan results. The tumour was very real. It was the most unnatural thing to see it sitting there, in my wife’s brain. The feeling of disbelief, hopelessness, horror is indescribable.
I consoled Debbie for about a minute before we decided to stick to the facts.
1. it had a decent outline, no creepy fingers sticking out into other areas.
2. it was 2cm from the surface, very operable by tumour standards.
3. it was still relatively small by glioblastoma standards, 2.6cm x 1.5cm (average blastomas are roughly around 10cm)
We walked back to Jess and put on an oscar winning performance. She was convinced that we were completely chilled. I think. Here is what the bastard thing looked like…that ball is the tumour… the milky white is swelling caused by the tumor. A really bad sign of spreading.
Thursday 14th February 2013
Happy Valentines day, we are going to open your wife’s head and take out her brain…
Not exactly my idea of romantic, but in the words of Tears for Fears…(which i had been listening to and the words kept playing over and over in my head)
“welcome to your life… there’s no turning back”
Jess was so brave, she fearlessly prepared for the day by telling me over and over…”its just like having my wisdoms out, relax, i’m going to be fine”.
I was allowed to wait with her in the pre-op room, where she finally shed a small tear, for her kids. After a brief pep talk, she was wheeled away and i walked toward the reception coffee shop where the rest of the family was waiting.
Again, i broke down, and sobbed my eyes out in pure fear and frustration. I was so angry this was happening to her.
Time dragged and after 2 hours we were summoned to the theater waiting area. Dr Govender looked serious when he approached and i thought there might have bee a complication.
The surgery had gone well, but the tumour wasn’t pretty. He had been aggressive and taken more than he had planned, just to be safe. We would only know the biopsy results the next day.
Jess took 3 hours to wake up, i sat there, waiting, singing to her, talking to her. Terrified she was going to wake up different. Missing a piece of brain is always a small cause for concern. No?
Slowly she raised her hand, lifted the oxygen mask and said…”what were the biopsy results?” i was flabbergasted . My tiger was still there!
Friday 15th February 2013
I arrived early as usual, 6:30am to see a much more conscious and happy looking wife. She was plugged into so many drips and blood monitors, as well as a catheter and a drain coming out of her skull. She looked uncomfortable to say the least. Jess cannot sit still for a second, let alone be tied to a million tubes and lie on her back for 3 days.
The doc summoned Debbie and i once again to his rooms. He didn’t waste any time. The tumour was cancerous, very cancerous. Type 4. But he got it all out.
Then he told me something that changed my perspective, we were lucky. He had never operated on a blastoma so small, they grow so quickly they are usually discovered to late. The seizure had saved her for now. Jess will need chemotherapy and radiation, but she is alive and has a good chance to fight, now that the blastoma is gone.
We focused on that small bit of good news when we broke it to her. Her heart rate went to 135 and caused the machines to alarm and nurses to run, but as always, she sucked it up, put on a smile and told us how grateful she was to still be here.
What friends and family we have!
This past week has been an absolute surreal blur, and today i finally get a chance to reflect on how incredible our family and friends are.
Since the minute this began, they mobilised into action. Brett, Cher, Tammy and Craig at the scene of the crime, Brett even leant me his um.. slops…(i wont tell anyone you have crocs) Cher pulled strings with people in high places to get the neuro there in the middle of the night.
Craig and Kimi who stayed with me at the hospital until 3am the first night, and have been with us every day since. My mom who looked after the kids for 9 straight days, anybody who knows our kids, knows that is a super human feat. My brother Pete, who after hearing my voice at my lowest point, jumped on a plane from Mauritius. My Dad and little boet Josh, who flew in from Cape st Francis. Jess’s mom, who has been by our side the whole way this week, and helped me carry the toughest news to her daughter. Daanie, Gav who also became a support crew for Debs and i. Tesia, Dave and my brothers for making sure all of Jess’s stock went off to stores in the middle of all this. Jason, Tracy, Michelle, for being with us over and over again. Jen Janse Van Rensburg for taking over Jess’s bridesmaids dresses despite a full calendar of jobs.
Brad Woodhouse, who i have only met once before, has sent me messages every day, helped prepare Jess and i for the journey ahead. He has leant on people in high places for advice that costs lots of money and is not available to anyone. Thankyou sir, you are a good human.
The 1000’s of people who visited, sent flowers, posted, sms’d, whatsapp’d and called in support and prayers and genuine concern. YOU GUYS ARE ALL AMAZING. We feel the love. Thank you.
Bandages came off today. Jess was a little emotional at the sight of it.
Its slowly sinking in what has happened and the journey we have ahead of us. You never think its going to happen to you. Until it does.
But seriously, you win chair.
We came home, had a few tears, which i think was started by whitney housten on VH1… hahaha, but Jess pulled me together pretty quick (yes, i am the one crying….useless i know)
Then our good friends Craig and Kimi arrived with dinner, amazing dinner, she is a crazy cook. We drank, laughed and felt better.
The doc was right though… i didn’t like what he had to say. So we focus on tomorrow, and the fact that we can cuddle up together tonight. Thats a good thing.
22 February 2013
Good Morning, it does seem that way today, the doom and despair of the past 24 hours away has floated away. I cant sit sit here and feel sorry for us, that would just be wasting valuable time.
Our house hold is very much back to normal in the sense that the kids are running amok, spiderman puts his suit on and off every 5 minutes and Anna is following him around thumping everything and everyone. Hard not to get caught up in the swing of everyday life.
There are some noticeable differences, the house is covered in flowers, the fridge is over flowing with food from strangers. Our cell phone batteries dont last more than a few hours because the messages, calls, and gofundme.com notifications do not stop coming in. So amazing to see the donations from strangers and old friends i haven’t seen in years, all my old surfing buddies from around the world, thank you guys, i feel like part of a big family.
I received a meal roster yesterday which knocked me off my feet, doesn’t look like we will have to cook dinner for the next month and a bit, which is a HUGE help because anyone with kids knows that 4-7pm is a hectic time in household with 2 kids. I cannot thank you guys enough.
Part of the depression from yesterday was the reality that our old life is officially over, it is time to build a new reality, Jess is not allowed to drive a car for the remainder of this year, and her business faces 2 options, sell or employ some-one to run it. So we began interviewing aupairs, and discussing her business plan. We used our first bit of the fund yesterday to pay the first oncology bill, and we bought a juicer (looks like we are going to be drinking raw veggies for a while!)
This morning we have the record player trotting out some Phil Collins and there is a much lighter mood in the room. We have decided to separate the word brain tumour from the diagnosis of death. Jess has already kicked one out of her head, so even if these docs are right and it its on its way back, then we will deal with that when it happens.
One day at a time.
Jax, your amazing photoshoot you have offered up.
Guy Buttery, Farryl Purkiss, Nibs, Matt Wilkinson, you guys have asked Sim if you can do a concert.
so from now on, we use head sets… just in-case.
P.S… Scan went well, mask fitted, radiation begins in 2 weeks.
P.P.S ….A really cool thing happened at my meeting in Cape Town today, i’ll share that story tomorrow.
Thanks to Leon for the time off and everything else.We are off to see our friends at Aces and Spades.
1 out of every 3 females will develop some form of cancer in their lifetime
According to those statistics, this disease will affect you or someone very close to you in your lifetime. Make the changes you need to now, don’t have regrets, or at least take out dread disease insurance cover so you can party your regret away! Whoohoo!
A childhood friend of Jess’s was diagnosed this week with a brain tumour, same age, tumour in the same place, quite bizarre. My heart goes out to her and her fiancÃ©. Hopefully her diagnosis is good and her road not too tough to travel. We are holding thumbs. We will attempt to be there for her in whatever way we can, the way everyone has been here for us. Which will be hard because you guys have been incredible.
It’s weird, I feel like such a veteran at this and it’s only been 7 weeks since jess had her seizure. I guess you age a lifetime in that single moment.
To all of you who have cooked us meals, thank you so much! It’s actually getting embarrassing now, taking these meals, I hope you all know we are so greatly appreciative. We are proud to announce that you all made it through round one of “Charity Master Chef “. Congratulations. Now good luck for round two”¦ I’m joking, I’m joking”¦ seriously”¦
You can never know,”¨
Just where to put all your faith,”¨
And how will it grow,”¨”¨
Gonna rise up,”¨Burning back holes in dark memories”¨
Gonna rise up,”¨Turning mistakes into gold”¨”¨
Such is the passage of time”¨
Too fast to fold”¨
And suddenly swallowed by signs”¨
Low and behold”
Just like that, a pedestrian crossed the freeway and 5 people died.Such is the way of the world, you can never know.It’s not easy to live fully in appreciation, in my opinion it is a skill that needs to be developed. Jess and I have not had a single disagreement, let alone a fight in over 2 months, so I would go so far as to say, that most of take our partners for granted, that’s how fights start, someone is being unreasonable, pushing a known boundary. When you truly understand the value of that person, you really don’t sweat the small stuff.Kids are the hard part, Oh My Hat, these guys don’t give an inch! Chemo, radiation don’t mean a thing! They just want to go 100 miles an hour 24 /7! Thank god for Shirley the au pair! She picks them up from school, has activities planned all afternoon, and this really gives them the attention and stimulation they need. Most nights when I get home from work they are bathed, fed and ready for bed!Jess is half way through radiation, 17 sessions down and she has been on chemo the whole time too. The side effects have been fairly minimal. She is pretty exhausted in the afternoons. From what we understand, the radiation kills brains cells and in the evening / night blood rushes in to try and repair the damage. The next morning she is right as rain.Her hair fell out the other day; literally just fell out in the space of 24 hours. It’s a perfect arc, in the shape of where the radiation is being targeted. She had a little melt down that day; my insensitivity to the situation probably didn’t help. I just figured that after everything she has been through, seizure, brain surgery, cancer diagnosis”¦ losing her hair from radiation seemed so trivial and short term?She did not feel the same! I understand better now the relationship between a woman and her hair! They spend their entire life trying to rid themselves of it everywhere on their body but not their head. Lord help you if you are in the firing line when head hair goes missing!Its strange for me, because I don’t notice it, I look at her and I still see the same girl, beautiful eyes, and a tiger who bites! Perhaps when you truly love someone you see something other than their outer appearance when you look at them? Maybe that’s why she never notices when I shave? ha-ha
In true Jess fashion, she was joking about it in a few hours and she has now given herself the nickname “the baldyman”
Friday was nutritional info overload day! In the morning Jess had a visit from a friend who is visiting from California, she is studying nutrition and has been greatly affected by cancer in her life. She helped Jess make sense of a few things and gave her confidence that she is on the right track. Thanks Kelly for visiting!
That night we stayed over at Jess’s folks place in Ballito, and had a Skype call with the USA nutritionist Michelle, who we have been working with. It was really great to hear from her in person and she quickly helped fine-tune a few of the supplements we are taking. Big props to Jess’s mom, she has really dived into the nutrition side of things and has been making sure Jess gets what she needs. The nutritionist gave us an A . Boom, take that cancer.
Can’t wait for this radiation to be over, so we can start the next round of chemo and get this treatment over with. I really am looking forward to just getting Jess to a place where her life is without cell destroying medicine.
That’s all for this week, we’re off to the beach with my family to see some friends, get some sun, and burn some toddler energy off!
We have been lucky enough to have two incredible mothers, who look after our kids when we needs space and we have taken advantage of that as much as possible. The pace of life when we are alone as a couple slows down, we get to talk like best friends, laugh, really absorb how lucky we are that we have each other and marvel over the incredible little monsters we have created. It’s much easy to really appreciate them when you are away from them!
Jess and I have been together for 17 years this year. I met her when she was 13 years old. I am so grateful for that. We have done so much in that time, seen so much, and we still have so many things to do, so we are scheduling them into the calendar. Not going to waste right now, however long that might be.
As always I must give thanks to those who continue to give their hard earned money to Jess’s Get Well Fund. There have been some incredibly touching donations lately. Julia Purkiss (Farryl’s beautiful wife) gave us funds raised from her first art exhibition, another friend of hers, who also recently launched her art career donated her first sale to Jess.
The kids from Christopher Robin (3 year olds!) bought in their teeth money from the tooth fairy (I’m not sure if that’s where it came from, but where else do kids of that age find cash?). An old family friend from Australia donated a whopper; I haven’t seen him in a decade.
Jacqui Bruniquil donated us her hard earned cash and a free family shoot, which is something jess has been asking me to get her for ages. She is over the moon. Still there are those folks who we have never met, who continue to donate, send wishes, support, stories and generally offer a shoulder to lean on, its so amazing.
The best part of all this generosity has been the fact that without hesitation I have been able to give Jess exactly the nutritional supplements she needs, pay the hospital, and the neurosurgeon, and the anesthetist and the ambulance without any pressure, or stress. That financial pressure would have been the worst possible environment for Jess if we didn’t not have your support. And that is a gift I can never explain in words.
Jess and I have attended a wedding last weekend, with a bunch of old friends, some I haven’t seen in years, it was so good to get out and just be around good people again. I crave that because I get so much good energy off my friends, laughing and all the reminiscing. A speech was said that night which mentioned an old friend, Jonathan Raath, who passed away many years ago. It really moved me because it reminded my how important that energy and spirit we carry around with us is, Venus is still with me, certainly with everyone at that wedding. I remember him like it was yesterday, he had the most infectious way about him, he could get you wound up into a frenzy in a matter of seconds. I’m sure wherever he is, he has everyone laughing and he is having a ball. I’m glad I got that little reminder of Venus that night. It makes me remember how I want to spend my time on this planet.
When I was in hospital recovering from my surgery, my very generous and loving parents offered to pay for Sim and I to go over to Mauritius at the end of the year for my 30th birthday to give me something to look forward to and get me through my treatments, given the fact that we now know how short life is and you don’t know what is around the corner we decided to take them up on the offer a little early as we both just needed to get away and have some time alone together again. So we found some cheap tickets, and between both grannies we organized a babysitting schedule and we were off!
We flew over to Mauritius last month to stay with Sim’s brother Pete and his wife Nikki (who live over there). We spent the first 3 nights with them and then 4 nights at the Tamarina hotel, Lorrin Jarvis from All-Aboard travel very generously donated towards our stay which was pure luxury, and wouldn’t have been possible without her, or Nix’s ridiculous deal cutting skills!)
Nix organized us a trip to swim with dolphins on our first morning that was absolutely magical! We drove out the harbor and they were right there, we all jumped off the boat and tried to swim towards them, I was so busy faffing with my head scarf that I completely missed them, I was so irritated with myself that I was going to be so vain and miss this once in a lifetime opportunity. I swam back to the boat and Egor, Pete’s friend, said he would drive me back and put me right by them to try again. I wasn’t wasting another chance, I took off the head scarf (this is a very big thing for me, I seriously was looking very Mongolian, really not the kind of hairdo that most people would choose), put on my goggles and dived in. It was amazing, there were hundreds of them swimming under me, next to me, just perfect!
Pretty much how the rest of our trip was! 7 days of sleep, beach, cocktails. Once again our family and friends have given us exactly what we needed when we needed it. A thousand times we thank you.
So we are back to reality now, and I have started my second course of treatment. I am taking one week of chemo pills, with a three weeks break, till the end of the year. Essentially 6 months of treatment and we are 2 months in.
The chemo is triple the dose as the amount I was taking at the beginning of the year, and I wont lie I can feel it. Chemo attacks all your fast dividing cells, so my tummy lining has been taking a hammering, and as a result I get terrible constipation and achy tummy, I am also very tired by the afternoon.
I have been doing a lot of soul search and self discovery over the last few weeks, reading plenty books, online articles, visiting different doctors and trying to find a cause for my cancer, and eliminate as much of the known causes that I can.
One of the biggest causes of cancer is stress and anxiety, and research shows people who have experienced a traumatic event, or had a stressful period 6-18 months prior to diagnosis and don’t know how to deal with these emotions develop diseases like cancer.
Sim and I started going to chat to an old family friend, Steve Mack, a few weeks back, Steve helped mentally coach Sim in his surfing days, then we both went and saw him after I had my miscarriages, so he has a good understanding of us both. Our evening chats with him have been so helpful in pin pointing what has caused me stress over the last few months.
So I’ve started trying to eliminate as much of the stress in my life as possible, and one of those things is going to be removing my labels from YDE and taking a bit of a break from the weekly rankings to perform, cash flow situations, and a demanding production schedule. When you have your own business you can never switch it off, and I like to over achieve. I don’t want to go into another season not performing 100%, especially now that I’m going to be on chemo for 6 months.
In Sim’s update he wrote about how I have been quiet since we got back, and I think I have been. When you are faced with death (I know this is a macabre way of thinking, but trust me there is no way of ignoring it once you have what I have), you start to question things in life, like why are we here, what is the point to all this, how am I going to die, etc. and I’m starting to realize that you cant over think life, no one has the real answers, its about what feels right, what you make of your time here, now, with your family and friends. How does the saying go”¦ “don’t take life too seriously, no one gets out alive”
So to my amazing husband, thank you for always putting me first and making sure that I get a chance to recover from this, your night time hugs of reassurance are what get me through the days, you are my rock!
Thanks to everyone for your kindness and support over the past few months. I am doing fine, chemo certainly has nothing on carrying a child and giving birth, now that’s a real challenge! So I feel well prepared for this.
My next scan is end of August, that will be the first chance we get to peak inside my head and see what’s happening. So I will keep drinking vegetable juice, taking supplements and resting until that day!
Our oncologist had never heard of him. Surprise, surprise.
9am on Friday we arrived at the neuro’s office, feeling apprehensive but allowing the hope to shine through that this was all just a mistake, or blown out of proportion .
When he pulled up Jess’s scan on the computer, I felt the need to tell him he had the wrong patient. That was not my wife’s brain. It simply couldn’t be. How could I be looking at this picture only 3 months after a clear scan? It is not something I can describe, sitting in a room with the love of your life and listening to a neurosurgeon tell you, “there is nothing left to do”.
How do you respond? How do you even process that?
It broke me seeing Jess’s mom hear the news, because as bad as it was that it was my wife, somehow when its your child, its amplified a 1000 times. Although she was strong, Jess was strongest as usual. Dr Govender quickly summarized the situation so our decision was easy.
1.No surgery, the new tumour is in the central part of her brain and simply inoperable, Jess would not return out of that theater as Jess.
2. Chemo has not worked, and the next round would be far more toxic and less likey than the first round to work, Temodar is the most likey to destroy brain cancer, unfortunately the type she has, has found a way to survive around it.
3. Any alternative methods are now our best bet.
How do we move forward? We focus on the next step.
Enter Dr Burzynski and the antineoplastons”¦
This treatment (although not fully supported by the cancer industry) boasts an incredible success rate with malignant cancer types, brain especially. He claims to have cured Grade 4 Glioblastoma, something chemo and radiation specialist say is impossible. And the first guy whose testimonial I see, is holding a surf board, do I need more of a sign? Check his story here:
So in a flurry of phone calls, emergency medical visa applications, and a couple conversations with the Burzynski clinic, we are heading off to Texas within a week. Time is not on our side so we really don’t have a choice.
Debs is going to look after the kids, and I finally get to show Jess what real Mexican food tastes like! And if we are really lucky, we might get to see Trav and Shauna for Christmas. Not the original plan for the holiday season, but we will make it a memorable one nonetheless.
This link below is the documentary Shauna initially sent us, its long, so put aside and hour or so if you are going to watch it, but enlighten yourself to the corruption and lengths big medical industry will go to, in order to protect their profits. For us, it was the survivor testimonials that convinced us that this is the way, you can’t fake that.
Next post will be from Texas, where, in the words of the worlds greatest idiot, George Bush, “we’re gonna smoke this tumor out!”
The flying time was rough on Jess, flights were super full and we didn’t get much sleep, Jess became very quiet and withdrawn, and I started stressing she was going to have a seizure, I watched her like a hawk for the entire 32 hour journey.
Houston has been pretty simple, its not the prettiest place on earth and by the locals admission, there is not much to see or do around here, so we have hit the mall a few times, hoping to get to the space center later this week, but mainly just resting at the hotel and lapping up the high speed internet for our new favourite tv series, “The Following”.
The Burzynski clinic has been fantastic. The level of care, compassion, and time the doctors have given us is unmatched in our experience. At no time have we felt rushed through the system, or part of a money making scheme (a feeling that does occur when you sit in the oncology rooms back in SA).
The doctor encouraged us to record our conversations with him, so we have a clear record of what has been said, very open, I love that. i have been able to send these back to family so they can feel like they were in the room.
Dr Marquis is the senior physician here and he ran us through the program, he explained everything in detail, simply, very little jargon. His 14 year old daughter has leukemia, his compassion and understanding for everything we were going through was key in earning my trust.
He then presented our case to the radiologist and Dr Burzynski himself. After a brief consult the three of them returned to see us and discuss the way forward. Jess will be taking a combination of drugs all specifically developed to target specific genes. This gene targeting is a very modern approach to fighting cancer, the basic concept is that there are specific genes that misbehave and targeting those individually vs the traditional chemo approach (kill all rapidly dividing cells ). Her initial treatment plan consists of new FDA approved drugs, which have less history than anti-neoplastons, but very promising results.
Due to on-going legal battles with the FDA, the clinic cannot offer anti-neoplastons as a treatment in the US at this time, this is unbelievably crazy considering how many people he cured with this drug and the incredible history of success they have with it. Big pharmaceutical companies are busy trying to patent his drug at the moment so it’s really political and complicated. Burzynski currently has the patent on this treatment, he discovered it, but getting these drugs through trials to a FDA approval takes 1000 of patients through various trials over a number of years, we simply don’t have that kind of time, so costs escalate when something is not part of the accepted conventional cancer treatment, because getting past medical aid is nearly impossible (these bastards wont pay for a blood test requested by an oncologist if the code is wrong, a trial phase drug has next to no chance)
The good news is that we can still be treated with this drug because we are internationals, however we need a doctor to request it from SA. Complicated but not impossible. However we will only be moved onto this treatment, if her current treatment plan fails.
Now for the nitty gritty, we have been here for 5 days and I have spent R280,000.00! Just on drugs for the initial 2 weeks of treatment.
The cost of this treatment going forward is roughly R200,000 per month, and Burzynski is only R45,000 of that treatment (that 45k cover 24 pills a day and treatment advice, and evaluation) the other R150k covers 4 pills a day, from big pharmaceutical companies. All of these can be sourced and paid for in South Africa . You starting to get the picture of how big this cancer business is for them?
So yesterday things took a turn for the worse, as I mentioned Jess has been a little spaced out since we arrived and I had even asked the doc to prescribe some steroids, to reduce her brain swelling which I was sure was causing the slight personality changes.
I woke up at 12.10am on Friday to the bed shaking and Jess convulsing, she was having another full blown seizure.
I quickly jumped up, switched on the light and flipped her on her side so she didn’t swallow her tongue, picked up the phone called front desk to call 911. Now there is nothing you can do for somebody having a seizure, except wait it out, calling an ambulance is pretty pointless too, because in reality we know why she is having them, and there is nothing the docs can really do but prescribe stronger anti-seizure meds. I didn’t care, I need the re-assurance from a medic that she was going to be okay.
The seizure lasted a good 5-7 minutes, full body convulsions and little breathing which caused her to go a little blue, but once the convulsions stopped her breathing slowly returned, but her eyes stayed rolled back in her head for at least 15 minutes, which was stressing me out because at that point I wasn’t sure if it was a stroke or a seizure. It took a good 20 minutes before her she regained consciousness and by then the medics had arrived.
Now my performance this time around was a huge improvement from the first seizure back in Feb! I calmly (not really calmly) packed a bag, dressed myself and collected all Jess’s medical records and some clothes for her while she was busy tweaking out on the bed.
After about 40 minutes Jess was able to converse with us and by the time we reached the ambulance she was pretty confused. Slowly she realized what had happened and we spent a limited time in the emergency room chatting with the docs on the best way to move forward. The doc recommended steroids to reduce any brain swelling and a higher dosage of anti-seizure meds. No brainer! Yes please! R7K later we were in a cab at 3am back to the hotel. Jess crashed immediately and I tried sleeping but every time she moved adrenaline shot through my system so hard my heart felt like it was going to explode out my chest. So I resorted to sitting in a chair in the corner of the room watching her sleep.
It’s been 2 days since that drama, the steroids have returned my girl back to me! She is arguing with everything I say, hitting me on the head for being cheeky and not staring blankly into space every 5 minutes. Texas is kak boring and expensive (not to mention stormy and raining) so we are chilling in our hotel room waiting to be discharged on Monday, collect our next month worth of drugs and head home! We will land in Durbs on Christmas day, nice present for us, to see our kids so soon.
I’m not sure how to thank everyone who donated money, I literally paid R122,000 for drugs the other day, out of the Jess Donation account, there was R125,000 in there. So all you have literally paid for her treatment. I am forever in your debt.
Our next MRI will tell us what is happening in her head, and whether we have made the right call.
Part of our ability to stay focused on the job at hand, has been the nightmare that is simply getting Jess her medication, which leads me to our second journey, the pharmaceutical companies, and government meddling.
When we were in the states Dr Burzynski gave us a treatment plan of five FDA approved drugs, 4 of which are considered off-label (not designed for her specific cancer). The FDA have forced him to stop administering antineoplaston drug that he patented, because it has not completed 3 phases of human clinical trial, which they will not allow him to do, despite hundreds of survivors of radical terminal cancer (anybody smell the stink of greed and corruption yet). So he took all their already approved drugs and through mad science developed a cocktail that could yield a similar effect and result: basically un-snookering himself, because they cannot block their big pharma drugs, those are the companies that control the FDA like a puppet.
Avastin (approved for brain cancer, covered by medical aid, intravenously administered every 2 weeks)
Afinitor (1 tab daily)
Sprycel (2 tabs daily)
Sodium Phenylbuterate (24 tabs daily)
Votrient (1 tab daily)
Add to this:
Steroids (24 tabs a day)
Keppra (anti seizure ) (2 tabs a day)
Epilem (anti seizure) (2 tabs a day)
And chuck in a whole host of nutritional supplements that compliment her drugs and help rebuild healthy cells, improve liver and kidney function.
That’s right there equates to R158, 000 per month. Of which, 50k is covered by medical aid.
R108,000 per month! This bill so far has been paid by our family, friends, (and strangers who have come across our story), I don’t think there are words that explain the incredible fantastic amazing nature of that fact! Really.
There are not a lot of people I know who would be able to afford this treatment out of their own pocket. Nearly no one.
Here is the ugly part. The price of these drugs varies so much from country to country, it may as well be murder.
Votrient: available for R144, 000 per month from UK, R6, 000 per month from India
Afinitor R180, 000 per month from USA- R25,000 pm from SA
Avastin and Sprycel same story as above.
The meds are patented drugs coming from big pharmaceuticals, which set prices in countries based on what those people can afford to pay. It’s controlled by these government “regulatory bodies” like the USA’s FDA (do you homework on these special chaps and the kind of controversy they are embroiled in, Monsanto, pharmaceuticals, fast food regulations) and SA has its own mini version called the MCC (Medical Control Commission). The basic cover story is that they are here to protect people from bad drugs coming into the country”¦ bullshit, they are there to ensure the price stays fixed. There must be backhands happening on a huge scale somewhere in this filthy system.
It all sounds very conspiracy theory, that’s not my style, I like facts. The fact is this: If Jess lived in the USA her treatment would cost R600, 000 per month. In SA It’s costing us R100, 000. If we lived in India, it would be costing us a 10th of that. All for the same meds, from the same drug companies. Fact.
Then there are the medical aids, which will find any reason not to pay for medication. Their excuse for our case is that four of these medications (although proven to work on other cancers) have not been tested in a clinical trial on her type of cancer and therefor they will not pay for it. Forget the fact that there are survivors who have beaten GBM with these drugs, then there is the even more perplexing fact that the course of drugs they will pay for has never cured anyone with what she has, ever”¦ make sense of that.
So where does all of this nonsense leave us, well its complicated, we have found people who are willing to help, and people who have done everything in their power to block our path.
We have sourced some meds locally, two others kindly brought in by friends, and managed to get a permit to bring one in the legal route, which was a difficult thing to achieve.
The important result is that we have managed to give Jess her meds every day. And where does that leave her”¦ well that too is complicated.
Jess has battled through these past weeks, confusion has increased daily and her communication has all but disappeared. Luckily for us, and her, she has been completely emotionless through this, the tumor seems to be pushing against this part of her brain and completely numbed her to any emotion. I’m thankful for that.
Throw in a good dose of gastro last weekend and things really started going pear shaped. Every day felt like a week and new side effect would show up daily. Debbie and I would call each other for updates and share scary stories every day, as we took turns looking after her, Debs while I was at work and me in the evenings.
Needless to say there were some really scary moments, and difficult situations, none that she would like me to share, and because I plan on her reading this one day, I’m not going to share them, because she would probably hit me.
Friday last week at 11:30 pm as we slept and I held her hand, I felt the horribly familiar sensation of the muscles in her body begin to contract and I knew before I had opened my eyes she was having another seizure. And then another on Saturday night, and in between all of this she was losing the ability to talk and walk, each seizure seemed to send her deeper into space. In my eyes, we were getting very close to the end. Roller coaster going down
On Sunday morning things had really bottomed out, she couldn’t move, could talk. We cleaned her up, and drove her to Alberlito hospital. She was admitted to ICU and promptly had another seizure. I really thought we had reached the end.
Jess was radically dehydrated, low on potassium, no electrolytes; blood platelet’s were extremely low. The doc reckons we lucky she didn’t have a stroke or a heart attack.
So they went to work on building it all back up, and controlling the seizures.
I went home broken, exhausted from three nights of no sleep and the unspoken fate that seemed to shortly await us. All that said, I think both Debbie and I were so relieved to have the care of our girl in professional hands, sleep came quick and easy.
“This tumour has gotten smaller”
It’s hard to write those words without tearing up. But when he said them. I stood there stunned like no one has ever been stunned before. Debbie burst into tears, and I looked at her and tried to process what he was saying? It felt so strange, like an alternate reality had just intercepted mine and I was stuck in the transition”¦
Guardedly optimistic, was the expression he used. But considering that in 3 months from Oct-Dec those tumors had grown from a clear scan to that size, and a further 3 months down the line the tumor’s were “less enhanced”. This was a very f*&#ing good result! The tumor was not growing and had reduced in certain areas”¦ are you kidding with me, I was expecting half her brain to be covered. Roller coaster soaring through the sky!
It’s silly to get too excited, Jess is still in a bad way, she still cannot talk much, still in ICU, but its only been 48 hours, to repair a good week’s worth of damage. It will take time. Her physio session this afternoon revealed serious mis-firing neurons, and physical rehab will be part of the recovery process. Her platelets are still radically low, so we hope to see these improve too.
Considering the aggressive nature of her tumor and the lack of growth over the past 2 and half months, all signs point toward Dr Bruzynski being the real deal. His unorthodox cocktail of medication is working. Your money was well spent, and Jess still here.
So where to now.
Well Jess if far from herself, she has a long way to go before she can come home, she needs to regain her strength, I want her here in professional care as long as that takes. She is in a life or death battle right now.
We continue on her treatment, with renewed hope and conviction that we are going in the right direction. We beg borrow and steal every cent we can so she can keep popping those pills until the day she is clear of this disease.
I need to thank some people, there are so many who deserve public praise but only a few I can actually manage in this post.
My brother and my old mates from the WQS days, Pete (I owe this man a lifetime of service) has been working on another fundraiser for Jess with the help of Mick Fanning, Travis Logie, Ace Buchan, Ian Walsh and ASP that will launch soon, It brought me to tears when Pete told me of his behind the scenes planning and the eager response from these guys. Look out for it soon, from what I hear, the prizes are once in a lifetime opportunities”¦ not available over the counter. Thanks boys, anything you ever need from me, I’m there. Matt Bromley, this kid! Rides the heaviest barrel of the winter at Pipe, wins R11, 000 and gives it to my wife? If there is karma, the good stuff is coming for you bromdog. Sophie! Despite not knowing us, she supported the Cape Town fundraiser (she bought Jordy’s board) and offered to assist by bringing Jess’s meds through from USA. Billabong and Vangie for the raffle they set up and The Natural Energy team who made a crazy donation. Jess Sumner, who donated her birthday money and organized a sexy girls car wash, which raised R30k! My old friends, Lee-Anne Smith and Justin Saunders, from Eco Swell lodge in Transkei for their raffle that raised 15k! Robbie Schofield and Archie for their assistance with travel plans”¦ I’ll leave it at that”¦haha. Mike Schelbach, Chad d Arcy, and so many others who have put their hand up, without hesitation.
Big thanks to my close friends, for supporting me, letting me vent, listening to my stories, looking after my kids, cooking me dinner, buying me beer, visiting Jess, giving me the day off work, you guys are special humans.
Every single person who has shared our story, donated a single cent, thank you. It’s working, its not in vain. I have to believe we are making headway against this monster.
by Ben Howard
That I could not hold onto you
My orange tree,
Left in the darkened room for three of us to share.Oh, maybe you were free,
Before my blackened wing covered you,
I took the sing from your song
I made a bed,
Where you don’t belong.Oh, poor me, she fell beneath the wheels to help me up.
Black Sea, I failed to be a light you found in love.
Oh poor me, she fell beneath the wheels to help me up.
Black Sea, the monster killed the melody you loved.Now I’m going places on my own.Blinded, now I see
That death moves amongst us,
And with such ease the rafters surround us.
These silent beasts are hard to bear.Lonely, oh, no not me
I have a grave to dig, fast moving feet.
You gave me light
Where it once was gone.
I made a bed,
Where you don’t belong.
So the time has come to put this final post up, and put into words the journey we have been on since my last post, which despite Jess’s physical regression, the scan indicated tumour shrinkage. Music has been huge therapy over the past several months, something about words sung in melody that has the ability to heal or release difficult emotions. The song above is easily the most relevant and powerful song that I have played over and over again, and I found it on Jess’s phone.
So what happened?
How did it all go so pear shaped in those last 2 months. Perhaps the truth is that things were worst than what we wanted to believe for a long time and the scan gave us reason to believe otherwise, reason to ignore the terrifying signs that were right infront of our face.
Let me go a little further back. In early November things really started to change in Jess. It’s a strange thing looking back now and the clarity of what was happening vs. how you perceive it at the time. Jess’s tumour was located in an area of her brain that heavily controls emotion. The first most obvious change that began, maybe even further back than November, was her lack of emotional connection to everything around her. She was emotionally numb. This was as much a positive as it was a sign of the tumour having an effect. At no point did I have to deal with an emotional distraught wife who was terrified of death, she was indifferent to anything that would bring a normal person to tears. Her natural bravery compounded this and allowed us to get on with the job of trying to fix her without the heart wrenching anguish of seeing her in fear.
The flip side was that she was not able to show positive emotion either, she was indifferent to our usual affection and cuddles. That was very difficult to cope with but I consoled myself with the fact that once the tumor was gone, that part of her would return.
This lack of emotion had some funny incidents, one day in January, soon after moving into our new place, she was walking outside with her Mom, a snake slithered in front of her across the stairs, the usual Jess would have vomited, screamed and died all at the same time. This Jess simply stepped over it without breaking her stride and said “interesting wildlife in this place?” As funny as it was, it was a real eye opener into how numb she was.
In my last post, I discussed the positive MRI results, vs. her regressing physical condition. We simply didn’t know what to make of it. We scratched for positivity in a nightmare that offered little hope, so when the scan returned positive, we clung to it like a life raft.
In hind sight it was a blessing, we still had another 6 weeks until she passed away, and if we were given a grim prognosis, those 6 weeks would have been that much more difficult, without hope. That small bit of hope got me out of bed everyday.
In the 6 weeks that Jess was in hospital, she was discharged once, but only lasted 2 days at home. Debs and I went about finding a nurse to care for her, a hospital bed, which was kindly, loaned to us, and stocking up with all the other amenities we required to care for her. It was a very difficult situation. She had lost control of all her bodily functions, and was barely able to stand even when assisted. Getting her into the car and back to the house made me realize how difficult this was going to be. By the time we got her into the house, we were exhausted. To make things so much worse, she couldn’t talk or communicate. That made every small task even harder.
Within a day of return home, she had lost another vital function. We simply couldn’t get her to eat food, but more importantly take her pills. She would chew them until they foamed at the corners of her mouth and poured down her cheeks. It was very difficult to watch this unfold and even harder to believe there was a way out. We clung to the scan results for hope but secretly I think we were all already processing the reality that she was heading towards the end.
I’m so thankful for Debbie and her nursing background through this time, there were some very difficult decisions to make, and I did not want to make them, I wanted to pretend it was all going to be okay. But Debbie knew we had to act fast or Jess would be in serious trouble with food or meds for more than 24 hours.
We made the decision to take her back to hospital on a Saturday and have a nasal gastric tube inserted, with a peg (surgically inserted tube into the stomach) to be done on the Monday. This allowed her to receive meals and a few of her meds immediately, the rest of her meds were to large, or not allowed to be crushed to fit through the nasal tube, hence the need for the peg straight into her stomach.
For 6 weeks Debbie, Danie and I played hospital tag, taking her bedside in shifts, I would get kids ready for school, drop them off, head straight there for an hour or two, debs would arrive and I would head off to work, she would stay the remainder of the day until I relieved her after clocking off work early around 3pm, then at 6pm I would head home to the kids (who were being cared for by Lindewe my guardian angel, domestic worker who was living in the spare room, my incredible mother and Kim ,the wonderful au pair my mom found. Debbie and Danie would arrive back at 7pm and give Jess her meds, and prep her for bed. Some nights, I would get the kids to sleep and then head back to the hospital. It was the most draining and difficult 6 weeks I have experienced and took me to a place in my head I never thought I would visit in my life. Jess could not communicate with us at this time, her head pulled aggressively to the left, and her right hand side had become completely paralyzed, a result of the tumour creating stroke like symptoms from the pressure on her midline (part of the brain that allows left side of the brain communicate with right side brain).
On the 18th of March our neuro suggested that the end was near, and we should take her off the steroids and let her go, the steroids reduce swelling and prolong survival. We were horrified; we were not ready to admit it was over. We decided another MRI would give us the answers we needed, so we booked her in for the 20th.
By the time the 20th had arrived, Jess had taken another turn for the worse, she was only awake for brief moments throughout the day, and when she was awake she was groaning, which was quite startling, we hadn’t heard a sound out her lips in a month, so it was very distressing. Fluid was building up in her lungs and the groaning was a sort of natural reaction to try and cough it up.
I must admit, at this point I was tired of all this, I was sick of being in that hospital, the smell of hand disinfectant will never leave me after those weeks. I was going through the motions everyday but I had had enough of being in this dark place. I wanted my wife released from this prison of illness.
We headed out in the ambulance for the last time, 50 minutes to Westville hospital for her MRI. A kind nurse allowed me to sneak a look at the scan as they loaded, it was difficult thing to see, her whole half of her brain had turned white with tumour, but I was so numb from all of this, I didn’t really get too emotional, I knew where we were at. Later that arvo, back in Ballito the neuro sat with us and confirmed what I had seen. The tumours had exploded in 4 weeks, from reducing in size, to covering half of her brain. That is the problem with a Glioblastoma Multiforme, is shape shifts, jumping from one gene to another, which makes it so difficult to treat, what works against it for a few weeks, becomes useless as it jumps to the next gene.
Once again the Doc recommended removing her from steroids, he believed she would only have days without the steroids, and that there was no point in prolonging her current state. It was very difficult to accept. But as morally incorrect as it sounds, there was a sense of peace that came over us, this was not our fight any more, it was out of our hands. So that evening for the first time in 4 months, Jess didn’t receive her steroids.
It’s important to note at this time, if we were faced with the same situation over, we would use the Burzynski clinic again. Although they only offered us an 18% shot at beating this, conventional chemo promised 0% success. Our oncologist told us she would die on the drugs they recommended, but could potential live longer although with much more pain from the toxic nature of its effects. Jess didn’t want that and what was the point of playing for 2nd prize. We rolled the dice on a painless treatment, which could have cured her.
Although it only took 36 hours for Jess to pass away, it was a very long time to sit and watch someone that you love lose their ability to live. I battled to compose myself through these hours, and had to constantly leave the room to breathe fresh air, the smell of the hospital, of the room was suffocating me. Debbie was so solid, she sat next to her girl for the entire time, talking softly and telling her how much she loved her. It was very rough to watch.
In the early hours of Saturday morning, around 4am I returned to the hospital with Jess’ s iPhone and played her favourite songs while holding her hand. Debs and Daan had been there all night and were pretty exhausted. At 7am she finally took her last breath, and peacefully slid out of life on earth. As prepared as I thought I was for this moment, the panic that came over me to keep her here was uncontrollable. Walking out of that room and leaving her body behind severed a physical connection I have done everything in my power to keep alive for 17 years. It’s not something I will ever forget.
Coming home to my kids, breaking that news was hard, but easier than I expected, Joel had me playing rugby in the garden about 7 minutes after hearing the news, such is the life of a child. What a blessing for me. This is where I will find my strength.
Her memorial a few days later was incredible, the church had seating for 1600 people and it was over 80% full. A huge thanks goes out to Tom Basson and Grace Church for letting us use their incredible space to say goodbye.
Greg Swart said some special words, Jimmy Reynolds put together the incredible video tribute of her life with pics that I had managed to gather up during the week. The turnout really moved me and I did my best to celebrate the life of my most favourite human.
The following day we spread her ashes at our local beach on the north coast. It was such a beautiful morning and Debs, and the kids each had a little moment to throw a handful of ashes into the water before we paddled out. We said a prayer with everyone on the beach and the then headed towards the sea. I had held my composure very well up until this point, but the ocean being the incredible force in my life that it has been, managed to wrestle my emotions from my control. I strapped on a backpack with flowers and Jess’s ashes, and jumped into the shore break, the minute the first wave washed over me on the way out, I was crying my eyes out. It was quite a bizarre experience, because I hadn’t felt the need to cry until this point, and all of a sudden I was sitting in the ocean with tears pouring down my face.
I struggled through a few words once we had formed the circle, released her ashes into the current and we all let out a customary roar that I think started everybody on the beach crying. It was truly special.
The kids really benefitted from these two days of saying goodbye. Joel seemed much more at peace and not angry with everybody, and kept telling me how much he enjoyed “moms goodbye party”. Anna is too young to understand and still asks me where mom is and where she is coming home. We talk about her often, kiss her picture on the wall everyday and watch videos on my phone of the better days.
Jess is gone now. And many people cannot understand how I am coping. But the simple truth is that I have been dealing with the possibility of her death since Feb 2013, for a full year we lived every day with the knowledge of this potential outcome and acted accordingly. We said everything we had to say to each other, we had no regrets. We talked about me being a single Dad, and her expectations of how I needed to perform. She told me how important it is that I find another wife if she passed away, it infuriated me when she spoke like that, but being a child who had herself benefited from the love of a step father after the death of her own dad, she made sure I knew that is what she expected of me. These fearless conversations have brought me so much peace after her passing, I look at photos of her and I don’t feel cheated, I feel proud. I’m proud of our time together, I’m proud of our love we had and the kids we made. I’m lucky we had 17 years together.
In the past months I have been so well looked after by my friends and family. They have all found a role of support and played their part in the moving on process. From the parents at Eco Kids who have cooked me dinner for the last 2 months, my friends who have taken me out on some big nights, it felt so good to have a good time again, and live and wake up free from the burden of terminal illness. Jess’s folks for looking after the kids so I can surf every now and then, or party till the early hours knowing my kids are safe and sound. My brother Pete, for rounding up the fundraising campaign, settling all of the hospital bills and my shortfalls here at home, the pressure that has taken off me its indescribable.
More items that were given to us when Jess was still with us have gone up for auction, there is some incredible stuff and I really have to thank Travis Logie, Mick Fanning, Taj Burrow, Damien Fahrenfort, Dane Reynolds, Volcom USA and Naude Dreyer (for Andy’s Board), you guys are my heroes and your humble nature despite you incredible success shows people what true champions you are. Sterling Howland, a man I have never met, but knows my brother, has co-ordinated all of this tirelessly from Australia. How can I thank you for that.
My transition to single father has not been easy but it has been so much easier because of these people. If I had to some up the pro’s and cons of being a single parent into two simple aspects:
Positive: I get to make all the decisions now! If I want to do something I can do it! Wahoo!
Negative: with two kids, its always my turn! Which pretty much rules out anything I wanted to do in the above positive, hahaha
I have always loved life and now I have a new value for time on earth, I’m not going to waste a single second feeling sorry for myself, Jess didn’t want that. I plan on doing that making the most of whatever time I have, that is what I have learnt from the past 14 month journey. I’ve told my kids that their life is going to be the most amazing adventure from here on out, and I’m going to make sure that I live up to that promise.
Those of you who are worried about me, please don’t be, I’m not in denial, I’m not blocking out my emotions, I’m so very much aware of myself and where I am at right now. Jess has liberated me from the meaningless, trivial things in life and given me a perspective that very few people are lucky enough to have. I’m going to honor that and make sure I pass it on as much as possible.
Love you all so much for the kindness and support you have shown my family, I look forward to paying it back over the rest of my life.
P.S…. here is the tribute video Jimmy did of her beautiful life.