What an incredible bunch of humans you all are. I have no words to describe the emotions we have experienced from the messages, hope, love, money, strength you have shown us over the past 12 hours.I will respond in time to each an every one of you individually.Right now i am sitting on my couch at home with the most beautiful girl in the world. Jess is home! This is great for 2 reasons:Firstly, our kids are running around and she is smiling from ear to ear. She has been gone for 11 days, the longest she has ever been away from her kids by a week.Secondly i am sitting on my couch, not that devilish visitor chair that became my nemesis over the past 2 weeks. I know Jess is hardcore having brain surgery and everything, but really thats nothing compared to the pain and suffering i endured in that torture machine. 11 x 14 hour days left me needing back surgery i think.
i joke.
But seriously, you win chair.

Well today was another one of those rollercoaster days.

We had an appointment with the oncologists at 2pm and a new job to get to in the morning.Jess has had the staples removed already from the cut, and she has a bit of a swollen,black eye from the fluid under her scalp from the op. Nevertheless she is looking gorgeous and happy as ever.

The donation fund has been hugely overwhelming, and she is very moved by all the support.The day flew past and i met Jess and her mom in the parking lot at the Oncology Center in Ridge rd. Our doc was Dr Rory Callaghan, he comes highly recommended from everyone we have spoken to, and specializes in what Jess has.To be honest i was expecting good news, we had removed most of the tumour, i thought we were 95% of the way there.

Boy was i wrong.

His first words were, “im going to be brutally honest, and you not going to like what i have to say…””What Jess has, will come back, its only a matter of time, we do not use the word curable with this type of cancer. Seriously, i am fucking tired of bad news. I am tired of curve balls. I’m tired of not being able to protect my wife from this bullshit. There are no words for the anger i feel right now.

What we now know is that the treatment will not break her, we will have a decent life through this next 8 -12 month period of radiation and chemo. Which is something we can be grateful for.

I asked Sim if I could do a post tonight, just to let everyone know how incredibly grateful we are for all the support, it is seriously so overwhelming!Although Sim and I look like we are the “perfect” couple from the outside, we have our rough days too.3 weeks ago the stresses of everyday life were really taking there toll on us. Sim was in between jobs, I was about to launch my new winter range, my mom inlaw had arrived to spend a week to help out with the kids who were getting to me! I felt like I was living in a pressure cooker!

We spent a lovely morning on the beach with the kids, rushed home to get ready for a business meeting, and then move on to my friend Tam’s 30th. Always rushing, never really stopping to enjoy a moment.I can’t really write to much on what happened after I had the first seizure, I don’t really remember much, but those next couple of days were such a blur for me. My family did a darn good job of keeping calm in front of me, so I never really suspected that there was anything to sinister, and if it was cancer, I was having the surgery and it would be removed.When we met with the oncologist this week and he was so brutally honest, it’ s probably one of the hardest things I’ve had to digest.

Wednesday was a very rough evening for us, luckily we have amazing friends Craig and Kimi who came round cooked us a good meal, made us laugh, lifted our spirits again.We climbed into bed that night and both sobbed, then we realised the only way we are going to beat this thing is if we take it one day at a time. No more speed tourist of life. Live in the moment and enjoy every second more that we are given with each other. I feel like I have been given a second chance to live, and really enjoy life! This might be a death sentence, but nobody is able to tell me when I am going to die. So for now I choose to live, and enjoy every second of those living moments, no more regrets, no more resenting people, or doing stuff I don’t like.

Again, I can’t thank everyone enough. Wok your fundraiser was announced tonight at the Barnyard! How do you pull such strings?
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.

It’s all so unbelievable that people would do this for us, you are worth so much more to people than you will ever really know.

You cant really put a value on life, people would rather have you here than lose you, and its just been so incredible to feel that special this week! So thank you every one who has contributed this week, wether it had been a donation, big or small or simply passing on the word.

Prepare for battle.

That’s the Hollywood version of what’s been happening in our house the last two days. We have been so inundated with herbal medicine stories, dietary plans, new age ideas, it has been hard to take it all in.So we have been cherry picking the stuff that make sense to us, that feels right and starting to put it into practice. Please understand, whilst alot of these things might seem like typical knee jerk reactions that are effectively too late to make a difference, what other choice do we have, we cannot keep on living the way we have been, simply for the kids sake. I would hate to find myself 20 years down the line in a similar situation with one of our kids and say, I could have changed our lifestyle, but I didn’t.

So we begin: first stop was the Apple store for two sets of headphones. Our neurosurgeon was very clear on one thing when we asked him why this was happening to Jess, he has been practicing for 25 years and is one of the most respected surgeons in SA. He said ” there is no evidence to support it, no facts, but the number of people coming through my doors with brain tumours in the past 10 years has exploded.” In his opinion, cell phones are a direct link to brain tumours. There were 4 young girls in Jess’s ward, all with brain tumours, all chatting away with the phones pressed firmly against the side of their heads…
so from now on, we use head sets… just in-case.

Then we popped down to the H2O store. Jess drinks 2 litres of tap water every day, she loves water. What that guy proceeded to show us was either the worlds best sales pitch, or the most terrifying facts of what we have flowing through our pipes at home. Looking at the general state of our government, it would be hard to imagine the water standards dropping a level or two? Either way, his sales pitch worked and we bought ourselves a water purifier for the kitchen and a shower head with a chlorine filter. The special chaps through in a freebee, probably out of sheer terror cause Jess showed them the scar, hahahaha. This might become a bargaining tool. I make joke.

Jess’s mom arrived later with whole selection of multi vitamins, melatonin, calcium and omegas. We used the juicer for the first time and shredded a carrot, 3 beetroots, lettuce and some blue berries to sweeten the flavour, and you know what, it was pretty good.Craig and Tammy arrived shortly after with a brand new dishwasher for us. They wouldn’t accept payment from us, so we need to think of a clever non-refundable gift that we can give them.

That afternoon after doing some research on cancer fighting diets, I came across a survivor of the same cancer Jess has, a 12 year survivor! I was so stoked. Her brain tumours have come back 4 times, and she has kicked it every time. She even climbed a bladdy mountain in the meantime. I really resonated with her story because she has two kids, and they were 3 and 1 when she was diagnosed, same as Jess. I dropped her a mail and she sent me back an incredibly heart felt message. Jess has found her first mentor of GBM to guide the way.We woke up early and took my mom through to the airport, she has been here for two and a half weeks, devoting every minute of every day to our kids and keeping our household in check. She lanscaped our garden while Jess was in hospital and helped us find and interview aupairs. We honestly would not have coped without her. Thank you Mom. There are no words, we love you so much!

Time flies when you having fun, not that i would classify the past few weeks as fun, but the the past few days have been good. Jess’s wound on her head is healing fast. She is getting back to some version of normalcy, even managed a visit to her CMT factory yesterday. Debbie, Jess’s mom has been her designated driver (she is not allowed to drive for the rest of the year) as well as the health expert. we have been eating so well thanks to the dinners from the Buckley’s and the Fourie’s ! Thank you guys!

The bills have started rolling in from the 11 day hospital stay… drum roll…… we are sitting just under 200k so far! Luckily medical aid is covering a big portion, so far the shortfall for surgery is around R30,000. Thanks to you special people, i wont have to sell her car to pay that bill!

We are still waiting for a few more to come in, also the MRI, which is supposedly a good one. We have been juicing up a storm, and watching a few good documentaries on cancer, alternative cures, mainly it all revolves around diet and what you put in. Quite scary when you realise how much chemical manipulation and interference there is between your food coming out the ground and reaching your mouth.We have really enjoyed being a family the past few days, Anna had her first day at school yesterday and seems settled already today when i dropped her off. i am doing the school run in the mornings, and i have decided on a new nick name, combo of mom and dad = mad … pretty good summary of what the process looks like (i cant take all the credit, Jess is still making school lunches).

We are quickly approaching the auction night, which my good mate Wok has put together (with the help of alot of others). It sounds incredible, the only bad part is that i cant bid on any of the prizes! Mick Fanning, Jordy Smith, Travis Logie have all donated boards, my mad ozzie mate Kobe Abberton sent me a message saying he has organised boards from Slater, Taj, Dean Morrison. Insane. there other incredible prizes too, weekends away, its madness. Jess and i will be there for sure, to say thank you in person. How could we not, it feels like a family gathering.

My musically gifted friends, Guy Buttery, Farryl Purkiss, Matt Wilkinson and the talented Nibs Van der Spuy are planning something very cool for Jess, which is going to take place on the 13th of March at Colombo in Umbilo… sounds like its going to an awesome evening too. Cant wait. So lucky to have such good mates.will post again after the auction… thank you again to everyone who has helped us in any way, shape or form. You have made us aware of how to treat others in need.S.

 

Winston Churchill once said “we make a living by what we get, we make a life by what we give”.

Many of you have given us just that, a second chance at life. It has been a day and a half since the auction at Spiga. I am still deeply reflecting on a night that i will honestly remember for the rest of my life.How do you give appropriate thanks for something like that? Jess says it was up there with her wedding night in terms of how special she felt. How incredible that you all made her feel that great in such a dark period in our lives. We were simply overwhelmed.I am so proud to be a surfer right now, what an incredible community we have, and how incredibly lucky Jess and i are to have been on the receiving end. in a lot of way Thursday night felt bigger than us, like there something more important happening. There really was an incredible energy that i am still coming down from.

Im writing from the berg, from our favourite little escape that Jess and i visit twice a year. Its right up in the mountains, they cook food all day long and its dead quiet. Exactly what we need to absorb the rollercoaster 3 weeks that we just experienced. We both still feel quite numb to all of it, almost surreal actually.I lay on the grass this morning staring at the mist coming over the mountains, wondering what the future holds for us, and then quickly reminded myself how important right now is. Thats why we are here. There is no point in thinking further than lunchtime, and simply being fully present to appreciate this moment we are so lucky to have right now.The kids did there level best to make the berg not a quite place. they have been shrieking around, chasing bunnies, riding horses, shouting at baboons. Really incredible how much they love it here.

Back to thursday night, to everybody that came, to everyone who contributed prizes, bought raffle tickets and those mad humans who bid their hard earned cash! To Wok, Craig, Solly, Athos, Arthur Limboris, Gary Green, Marco Santoniccolo guys we are truly forever in your debt. You have all shown me how to support someone in need. i have begun replying to all of you who have donated, i think i am about half way, but there are so many of you i had to break up over a few days. Not too much time allowed on the computer these days.A special thanks to to Jevon Le Roux and Ant Hulsen for their efforts, the stickers, the t-shirts they made up with #jessgetwellsoon. So cool. Ant is really keen to raise awareness around this and we are going to do what we can to help.Now if there is anyone reading this, put your phone down, close your computer, go find that special person or special persons in your life, put on some good music, go make some good memories… thats what i’m going to do.adios.

     

Sitting on a plane somewhere high above the Transkei, I have a chance to write again. So easily we are caught up in the chaos of everyday life. I am flying to Cape Town for a sales pitch, the first one for my new job, and I am already late.The flight left an hour late, which basically has me landing at the end of my appointment and an hour before I need to re-board for Durban”¦ not exactly smooth sailing. I need to be on the 12pm flight back to Durban this afternoon because Jess is having another CT scan today at 2pm. So I will be the guy blazing the fast lane on the N2 at around 2:15pm this arvo. It seems my delayed flight is a good chance to reflect on my priorities. It’s such a fine balance, living in the moment, whilst being a responsible human being. Every part of me wants to sell everything, take the donation money and my family and move to a little straw hut on the beach in Mozambique. Live every day like it’s our last. But then that’s not really good for the kids, or for Jess which means its not good for me.I need to make sure we have a solid saving and financial plan, to get the kids through school, to fly Jess wherever she may need to be in case of some miracle cure. How do you find that balance? What’s the right thing to do? I think the answer always lies somewhere in the middle.

So today I’m doing the responsible thing.Jess had her head shaved yesterday. For her, it has been the hardest part of this whole thing ironically. They needed to shave it because her head cannot move during the radiation and the mask needs to fit without any movement. So she can’ t be lying on a big mop of hair. She looks so hot though I reckon, like some kind of movie star.I am terrified of today’s brain scan.We haven’t exactly had any great news at any point during this whole affair and today seems like another opportunity for more of the same. This is the trick to what we are dealing with, finding a way to enjoy every day under the threat of what may return. It safe to say I’m not very good at it yet. Jess on the other hand is pretty amazing at it. She has been back at work for a few hours this week, under the close watch of her Mom. She has been resuming motherly duties with pure panache, no moaning. I really need to raise my game. I’m still so angry. Simply for the fact that I cannot protect her from this. It makes me furious actually. But that’s not going to help anyone. I will keep doing the best with the things that I can control, that help her, and find a way to release some of that frustration. A cyclone swell would be welcome any time soon if Neptune is listening. A few good beatings in front of the pier has always been good therapy.The fundraiser in Cape Town is tomorrow night at Aces and Spades bar, thanks again to Wok, Ant Hulsen for sorting it all out, and Reg and Twig for letting us use your spot. Legends. My father in law Danie, who bid the highest for the Jordy board last week, decided he didn’t like how it turned off the top so he has re-donated it for the Cape Town event (I joke, he says he spent all the money on the board, he didn’t have enough for fins anyway, hahaha) Thanks Daan, you are a great man!Thanks to all of you again for your continued messages of support, food, money, love and care.S.

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.

“Life’s not for pussies”. Ain’t that the truth! My good mate Alan and his incredibly brave wife Debs dropped off dinner for us yesterday (delicious by the way). We got talking about life’s curve balls, goodness they have endured a few, and they shared their motto, life is not for pussies. I couldn’t agree more. Actually sounds like a good t-shirt print, we can make a few, I still really like the one that was posted on the donation wall a while ago, “cancer, you are a f*&#k face and no one likes you”. Brilliant. I’ll wear that tee too. Actually I think I am going to have a few made up and offer them up on the site.

As much as I want to feel sorry for myself, my wife, our kids, I can’t stop thinking about that poor bastard in the US who was chilling at home last week”¦ and a sinkhole opened up in his lounge and swallowed him never to be seen again.That’s shit.I mean come on, at least we got some kind of warning signal, a chance to fight! This poor guy was sitting at home, minding his own business and the earth simply ate him. They can’t even find his body. That oke’s family is allowed to feel sorry for themselves. Not us.So I promised to share this cool story that happened yesterday, I arrived in Cape Town late for my meeting but somehow it all worked out okay. We sat down in the boardroom and began introducing ourselves. All of a sudden, Chelle, the buyer we had flown there to see, starts connecting the dots. Turns out she had donated prizes the night before to the auction our friends were throwing in Cape Town. Her mom had struggled with Cancer and the story she had seen on Facebook touched her, and she decided to do something. And now here I was sitting across the table trying to start my sales pitch! (No I didn’t use the cancer guilt trip!). It was a really cool moment. Check out her stuff Dear Deer on Facebook.I rushed to make my flight back to Durban and then rushed to meet Jess at the oncology rooms. She had finished up, scan was clear and mask was fitted! Over and done with! What a relief. She was carrying a R40,000 bag of chemo pills which she will begin with her radiation in two weeks time.

We got home and I told her the story of my meeting and how it all unfolded and we sat there, amazed at the far reaching arm of support we have been shown, and Jess looked at me and said, “we cant sit here while people raise money for us! We must go say thank you in person.” Far be it from me to say no this little lady right now. So we made some calls, cashed in on our gold Discovery Health status (yes, ironically we were upgraded to gold this year for both of our outstanding health”¦there is a very funny joke in there somewhere, but maybe it’s too soon to tell), to cut a long story short we were very graciously sponsored two tickets to Cape Town and 2 nights off from being parents, and a chance to be lovers again. Oooooh wooooo hoooo!

So once again I am on a plane to Cape Town, with my sexy wife with the short hair (we decided her post-op hair cut was looking way too similar to skrillex) . We’re coming in hot! Ready for a good night of seeing old friends and new ones, and another chance to live in the moment. I am just enjoying the opportunity to see all our bergie mates.Thanks to Granny Lito for looking after our little rascals while we are gone, we know they are in safe hands!
Thanks to Leon for the time off and everything else.We are off to see our friends at Aces and Spades.

     

Jess and I are home from Cape Town and we are still floating on a high from the last 2 days. We decided to shoot down to the Cape for the fundraiser that Wok, Ant and everybody had put together. Simply to be in the presence of such awesome friends and feel that support.It was an incredible night. We saw friends we haven’t seen in ages, some as long as 10 years maybe? We made friends with people who we have never met, who came to support and donate prizes and bid money. It was surreal. We stayed as long as Jess’s energy would allow and by the time the party kicked into full gear we were headed for bed.

We spent 2 days in Cape Town and really enjoyed the simple pleasures of each others company. We slept, talked and ate good food, and drank great coffee. So good for the soul. Since the donation site launched and our story hit social media, it really seems to have grown bigger than us, both auction nights have highlighted to us a very strong community of friends and surfers, that have such good hearts. There is a story here that is very encouraging for our generation and our time. Matt Wilkinson called me while we were in Cape Town and he wants to help us tell that story. We agreed. It’s the best way to say thank you, stand back and understand what has happened.So this week, at the musical tribute that Matt, Farryl and Guy are organizing there will be a film crew to document the night and the story that is unfolding. At the least it will give thanks to those who have helped us so much, especially the ones we have forgotten to mention, who we have not acknowledged yet. I’m not sure of where this is all going, but I think Jess and are both going along with it, it seems to have an energy of its own, and it is very positive for us at this stage, so we go with the flow.

The kids welcomed us home in the best possible way, big smiles, lots of stories and laughs. Its Joel’s 4th birthday this week, he has grown up so fast it blows my mind. It wasn’t long before they were making us pay for the two-day break, Anna woke up at 4am this morning and wouldn’t go back to bed, the struggle woke Joel and within minutes the whole house was downstairs watching tv. The luxury of our Cape Town sleep is a distant memory.Jess and I have not mentioned the special friends who have been cooking dinner for us, every week night we have had something dropped off for us by a group of great people. Thanks guys. I promise you have a “one night off cooking” token from us that you can call in any time you like. We owe you big time; well I owe you big time because I would be doing the cooking!We have pretty smooth week ahead (haha, after what we have been through, I should know better than to make assumptions like this) Jess has another 2 weeks of healing before the chemo and radiation begins. Really looking forward to Wednesday night, such a fantastic group of musicians, such an awesome venue. Thank you guys.See you there.

I have not written in a while because i have been on planes trains and automobiles for the past 4 days. I’m on business trip to New York and Chicago for 8 days. I left Durban on Thursday, on such a high after Wednesday night. What an incredible evening. Matt Wilkinson and his crew of specially talented friends put on a night of music for Jess i will not ever forget.Unreal. Amazing. No words do it justice.And Jess even had the balls to make a speech. She really keeps surprising me at every turn. Not sure why i am still surprised, one of these days i will tell you the story about how she gave birth to Anna. No drugs. All natural. By Choice. Crazy woman.

So we have had a problem with the GoFundMe donations page. We seem to have solved the problem for now and i tested the payments earlier paying by credit card and it worked fine. Thanks to those of you who let me know, sorry it took so long to fix.The problem with travelling is that old saying… “absence makes the heart grow fonder”. Well i couldnt be more fond of my wife and kids right now, their value to me is very clear. Problem is, very movie i watched on the way over had some heart wretching story about love, kids, or illness. Needless to say i cried most of the 30 hour journey.

This trip is a great time to get some perspective on things. Put a little distance between me and the daily routine (which doesnt allow much time to contemplate the issue at hand). I have a few theories i’m developing on this. i’ll deliver my thesis on life soon. Stay tuned.Today is our son Joel’s birthday. He is 4. What a great little man. I have got him such a cool present i can’t wait to get back and give it to him. New York is the best city in the world. I’m sold. Jess has told me she is not missing out on the next trip here, so i better start putting some salary away, cause she will destroy my credit card here!

Jess begins chemo and radiation tomorrow. Feels really strange to say that. Sobering. Radiation is very quick (3 minutes every day for 6 weeks) and painless, i used to take my grandfather for treatment, and he use to scowl at the staff and say…”this is a waste of time, they doing anything, im just lying here … take me home” haha classic old ballie.

The chemo is a pill a day, so the side effects will take time to build up. Jess is not scared. She will be on chemo for 6 months.To Jess: I cant wait to see you my lover! Look after our kids like the amazing mother you are. Thanks to Debs and Danie or looking after my family while im gone! Lastly thanks to Fez, Matt, Gareth, Rowley, Guy, Nibs, The brothers whose names i can’t remember but music i wont forget!

        

Have you ever put diesel in a car that takes petrol? It keeps going for a little while, until the diesel makes its way far enough into the mechanics of the engine and the whole thing seizes up, and you will go no further. Its pretty complicated to fix too, draining the engine is not an easy job. I have been doing this for a while now, only, not with my car.

These past few weeks Jess and I have been communicating with a nutritionist in the USA who specializes in treating cancer patients. We found her via the advice of a 12-year survivor of the same cancer Jess has. Whilst I was in the USA on business, she sent all the relevant documentation that we needed to my hotel in Chicago. It has been an eye opener to say the least. The simple way in which she breaks down the various nutrients our body needs and how lack there of encourage the growth of disease, has left me completely reformed in how I view food. For hundreds of thousands of years we have survived on food out of the ground, we have evolved to become the civilized world we are today on the back of that nutrition. The unnatural introduction of preservatives, flavourants and invention of microwaves and such things, has severely limited the intake of natural wholesome foods in a very short space of time. I know I sound like a cliche, I can hear it. It grates me that I am that guy now, but why are we so against eating right? I’m not talking about going full vegetarian, or vegan, I just simply mean limiting the unnatural processes and time between your food coming out the ground and into your mouth. It’s that simple.One thing I have learned from the information this woman has given us, is that it is not one single thing that causes this illness, it’s a number of key factors that are missing and the consequences are starting to add up fast. Our civilized economy has exploded in the past 50 years. We have simplified the process of food production with the end goal to yield the most money, under the disguise that your life is easier when your meal can be created in 2 minutes in a microwave and costs less than buying all the ingredients.Pesticides are not there to improve the plants nutrition; they are there to kill bugs so they can squeeze more out of the harvest. Antibiotics in animals are not there to make you stronger, its there so the cow doesn’t die to early and they can get as many kilo’s of meat when its time to go to the slaughter. Preservatives are not in food so you don’t waste it, its there so they don’t waste money. I heard a story the other day about grapes”¦ until recently grapes were only able to be air freighted because of their short life span when ripe, under a week from being picked to hitting your shelf, that was until some company developed a carbon gas releasing sheet that lies under the grapes, and now they last 6 weeks! I’m not saying its all bad inventions, but I am saying is how much of the old school good is being blocked out by it? I know the thought of having to find a organic farmers market every time I need a meal would drive me nuts, because life is too fast for that kind of added pressure. But consider for a second that last statement, because I’m pretty sure 99% of us feel that way, we are prepared to sacrifice the quality of fuel that goes into our body because we have more important things to do?What could be more important than the vessel that carries us around this planet, life is not possible without it. We take our bodies for granted. We abuse our engines. The old school self service hand pump petrol station has been replaced with a diesel superstations, with scantily clad models pumping the gas for you in no time, and they take credit cards, and they’re on every street! So we put diesel into petrol engines. Because it’s convenient, and the packaging looks sexy. And it tastes so good when it hits your lips, the food I mean, not the scantily clad model. I love chips. Where was I?

Another week has passed, and much has happened. Jess is 1 and a half weeks into chemo and radiation and she is doing very well. Her side effects so far have been minimal, head aches in evenings, quite fatigued (she is sleeping a couple hours most afternoons) but on the whole she is wonderfully herself, making kids lunches in the morning, dressing them for school, even getting a little work done when it suits her! Such a champ.She has really enjoyed the nutritional info we have been given, its very empowering understanding how each meals is helping her, and what she can do to compliment her chemo and radiation. We are keeping our own file of blood work results, to monitor the hemoglobin levels, and a few other key factors whose names I cant remember. The importance of this is the limited feeling of control it gives us, like we have the steering wheel, or at least that we are fighting for it. Psychological advantage. When I was about 16, my friend, Farryl Purkiss (such a weird name?) or was it Peter Brennan? (He’s just a weird guy), anyhow one of them gave me a book called Mind Power, by John Kehoe, and that book has guided me through life’s challenges ever since. Easily the most influential books I have ever read. Jess has it on her bedside table as I write this.Speaking of reading material, I picked up the new Time magazine on the way back from the states.Cover story reads “HOW TO CURE CANCER””¦okay so it turns out there is no new cure, they were just trying to sell magazines, it worked. After I calmed down from my involuntary explosion brought on by my hatred of mass media, I noticed a little statistic in the article”¦1 out of ever 2 males will develop some form of cancer in their lifetime.
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 fiancé. 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”¦

     

“Such is the way of the world,”¨
You can never know,Ӭ
Just where to put all your faith,Ӭ
And how will it grow,ӬӬ
Gonna rise up,ӬBurning back holes in dark memoriesӬ
Gonna rise up,ӬTurning mistakes into goldӬӬ
Such is the passage of timeӬ
Too fast to foldӬ
And suddenly swallowed by signsӬ
Low and behold”

In the early days of Jess’s diagnosis, my best mate Craig burnt me a power playlist of songs to listen to. Considering I now have a 45 drive too and from work every day, it’s safe to say I have listened to it well. Joel has even coined track 9 as “the Spiderman song”, we listen to it every day on my way to dropping him and his sister at school. Anna has even started head banging to it.But track 7 is the gold. Eddie Vedder, “˜Rise’ from the “Into the Wild” soundtrack. These lyrics speak so perfectly to my current state of mind, and the uncertainty of where we find ourselves post cancer diagnosis. You never know what’s around the corner, all you can do is wake and be grateful for the day ahead, live in a way that leaves no space for regret.

My brother, Josh, graduated from high school last year. His whole life ahead of him, endless opportunities, roads to choose from, a very exciting time in your life where, if you have the maturity and perspective, you can choose what kind of man you will become. He has this gift. He has maturity far beyond his years. His good friend, Angelo, who had similar exciting prospects ahead, was killed in car accident last week.
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!

  

   

It’s been a month since I last wrote; life seems to be moving an incredible pace right now. Again I am sitting 30,000 feet in the air, with no internet (actually there is internet on this flight, but I cant get on for some reason). Its becoming a common thing that the only time I have to sit and write is when I am on a plane.I have been travelling a whole lot in the past 3 months and many of you are probably wonder what kind of selfish bastard travels around the world while his wife is fighting cancer at home. I have asked myself the same question.

Truth is Jess has forced me out the door, for a number of reasons: firstly I have been given an incredible opportunity in my new job which required some serious travel in the early part of the year, secondly a salary still needs to come in! But most importantly Jess has allowed me to travel because she is not playing the victim in any shape or form. I know there are days that have been hard for her, but her strength and courage have allowed me to get me work done, which is incredible.I remember the day we were told that Jess was facing 7 weeks of radiation and 6 months of chemo, my vision of what lay ahead was along the lines of a pale, bald version of my wife lying in bed with me feeding her what little she could stomach. That is the case; I’m sure, with many other cancer fighters, but not with Jess. She is so strong I have no words to describe it.Some mornings I’ll wake up and she is not in the bed, and I will walk downstairs, she has both kids sitting on the kitchen counter, chatting away to her, while she makes them breakfast, lunch for school, having let me sleep in. This all while she pops her anti-nausea, then her chemo pills, then her 20 plus nutritional supplement pills. She puts in 3-4 hours at her office every day. Hardcore.

Jess finished radiation last week Monday. It was a big relief for her, because the daily routine of having her brain fried was not going down well towards the end of the 7 weeks. Her hair has all but fallen out in the radiated area, leaving a small Jewish hat shape floating at the back. She reckons she looks like one of those Mongolian mountain kids. Now that the treatment is over, her hair will take about 3-6 months to start to return. That will be a happy day for her. I think she looks incredible, considering my vision of what radiation was going to be like; she has kicked its ass. No problem.

So where to from here, well Jess has been given a month long break from cell destroying medication, which is great! A chance for the swelling on her brain to reduce and for her daily routine to return to some normalcy. In 2 weeks she will begin a 6-month course of chemotherapy to finish off her treatment of this glioblastoma. Good riddens.The trick now is to live. To live under the threat of what may return, what potential problems may arise, that is the key to no regrets, quality of life and possibly the miracle cure? As far as I’m concerned, this thing made a mistake, it showed up in the wrong person and it was given a one-way ticket out of town.What lies ahead”¦ the only thing that gets Jess (and I) teary and upset is when we start allowing our minds to wander off into the future, what may come, what may or may not happen, it rattles us both and we squeeze each other tight and remind each other that we have right now. Right now can’t be taken away. Then we usually switch on the lights and book a weekend away, hahahaha. Mtbeds.co.za is the bomb! Luxury at a heavily discounted price. 

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.

Cheers.

S.

     

Hi everyone, Jess here! It’s been a while since our last update, I’ve been begging Sim to write a post on how we are doing for ages, it’s always a bit awkward when you bump into people and they don’t quite know how to ask how you are doing (please don’t feel weird to ask”¦its not uncomfortable for me to answer) It’s like the big “C” is the elephant in the room and nobody knows how to look at it.So last night my poor exhausted husband wrote a post (this man is incredible he will do pretty much anything for me), but the words on his computer screen were just not his normal soulful self, which got me thinking about how much I have been hiding behind him and expecting him to answer to the world for me. Last month whilst filing in figures on a spreadsheet with his boss, Sim feel asleep at his computer! He has tirelessly been getting up with the kids at night (anyone who knows Joel will know how at 4 years of age this kid still does not sleep through the night!), dropping them off at school, working from 8.00 till 5, driving home in crazy traffic from Pinetown to Durban North, and getting home and having to play “doof-doof” with the kids till bedtime, and some nights having to cook supper because I am just to exhausted. My husband needed a break.

 

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!

          

Jess’s 6 month MRI went well! Doc says there are two areas of minimal concern but perfectly normal after surgery and he expects them to reduce with chemo. Swelling is significantly reduced and he is very happy with the scan. No change in treatment, Jess will finish her chemo in dec and we will rescan end of nov. Big relief! Drinks on me tonight. Thank you to everyone who has helped us on this incredibly difficult journey. Here is a pic of the hole in her brain 6 months after surgery, the milky white is the swollen brain tissue.

  

 

This post is not an easy one to write. You will have noticed, if your were following our story, that I have been very quiet for a while, the truth is I didn’t want to post to this blog ever again, I wanted to leave this part of our lives in the dust and live happily ever after.Unfortunately that is not our journey, and this ugly monster is back in way we could not have imagined. Ironically I have failed to follow my own advice, lessons that I learnt only months ago, I have again become casual about time, and worried about plans, and busy with silly things that mean nothing in the big scheme of things.

All of that was brought sharply into focus this week.Jess had her 6 month MRI scan at the end of August, the results were great, no sign of tumour growth, reduced swelling of her left frontal lobe, all signs pointed toward the positive. We celebrated. I cried. Life was back on track. On the 3rd of December (this past Tuesday) Jess had her follow up MRI, she will need to be scanned every 3 months for the rest of her life, so it is part of our routine now. It was a normal Tuesday, Jess insisted that I don’t even come to the scan, because no results would be given there anyway. So I went to work, Jess and her mom routinely went about their day, fitting in the MRI as if it were a trip to the grocery store.Now the thing that I find so ironic is how confidently we plan things, even us, as if we know how its all going to unfold. We had a holiday to Cape St Francis to spend Christmas with my folks. We were counting the days, till we could relax for days on end with family to entertain the kids!Debbie called me on Wednesday morning. I was at work. The minute I heard her voice I went white. I knew before she finished her first sentence that shit had gone horribly wrong, I imagined that Jess had had a seizure, or stroke, or car crash in the space of a milli-second. But it was the oncologist who had called her and raised the warning alarm. The scan results were not good.Debs quickly arranged an appointment with him that afternoon and I shot home to break the news to Jess in person, whilst try my best to act like it was all cool, minor speed bump, just need to go and figure it out.The oncologist was blunt, there was renewed activity, signs of tumour had appeared across the brain midline into the right hemisphere, and he recommended a heavy dose of 2 chemotherapies mixed. Wow. Intravenous chemo for 6 months, that would have severe side effects. Not exactly part of our Christmas plans. The success rate of this chemo on her type of cancer …. 0%. Sounds like a great plan Mr oncologist.We asked to be referred to our neurosurgeon for a second opinion because despite the radiologist report, we hadn’t actually seen the scan yet. I just hoped this onco was trying to boost his Christmas bonus by over hyping some increased swelling and sliding in another round of chemo, ridiculous I know but you have to hope for something.

Now a close friend of ours, Shauna Logie, Trav’s wife, has sent me a lot of info on new age treatments over the past 8 months, but one of them really caught our attention. Dr Burzynski in Texas. He has been waging a very controversial war against malignant cancer in the USA, with his patented drug concoction of anti-neoplastons. He has the reputation amongst oncologist and traditional cancer specialists similar to that of Rick Marshall and the tacheon amplifier (The Lost World, Will Ferrel, nevermind if you don’t get it). Needless to say big cancer business feels very threatened by this man and has waged a Supreme Court war against him for the past 20 years. He won, and has just been granted FDA trials.

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:

http://burzynskipatientgroup.org/james-neal-treadwell

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!”

S.

Howdy Partners.We are here in Texas and I have very, very bad news!Jess, does not like Mexican food.Clearly this tumour has damaged her brain more than we initially thought!Lucky for us, Dr Burzynski is going to try and fix it.Jokes aside, it has been a radical week and a half since I last wrote, from the grim oncologist meeting, to the scan review with neurosurgeon Dr Govender, I went into over-drive making sure we secured a meeting with the Burzynski clinic and a Visa. Once that was sorted we had to squeeze ourselves onto an airline passenger list which at this time of year is not easy or cheap.My good friend Greg Pearson donated all his hard earned voyager miles (250,000!) for us to use as we pleased, unfortunately the flights were so full, we weren’t able to capitalize on his generosity. Maybe on the way home! Lorrin Jarvis from All Aboard Surf Travel snagged us the most direct flight she could at half the cost of what I was finding online! Granny Joubert (Jess’s mom) grabbed our precious kids and Friday the 13th we kicked off to “˜Merica .

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.
 

Oh my gosh, where do begin.  I’m not going to be able to put the past 45 days into words that accurately describe the roller coaster we have been on, but I will try stick to the facts, you can try put yourself in that place and imagine the rest.There have been two radical journeys we have been on since returning from USA. Jess’s physical health, and the political nightmare that is the pharmaceutical drug trade.I’ll start with Jess’s health:

As I mentioned in my last post, Jess started showing physical changes when we arrived in the USA, spaced out, confusion, and general quietness were starting to happen on a regular basis over the course of our trip.Since our return these symptoms have gradually become worse and worse. There have been good days and bad days, but if I look back now she has slowly slipped backwards in her presence of mind, physical strength and communication.The most difficult part of all this has been watching it slowly get worse. The fear that comes over me when she asks me if we have had dinner, 3 minutes after I have cleared her plate away, I cannot explain how it breaks my heart. The confusion is focused on short-term events, her long-term memory is fine.

This all continued to escalate up until this past weekend, when she was admitted into ICU. But more on that later.The fear and despair i have is that the treatment is not working, have we done the right thing? Is Burzynski the real deal? Am I killing my wife? Fear and despair are emotions that don’t add value to any situation so i try to push it aside. There is will be a time for that, but it is not now.

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.

These are:

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.

Early on Monday I arrived at the hospital with my mom (she had flown in the day before to look after the kids), Jess was sleeping, but I was unable to wake her, the nurse asked if I had given her sleeping tablets, of course I hadn’t, we tried for 20 minutes but had no luck. I figured she was in a coma. Roller coaster is now in freefall and people are vomiting.We left the hospital to drop the kids at school, and when I returned 30 minutes later, there the cheeky thing was, sitting up eating breakfast! She said “hello babe!”I nearly fell over.Jess had recovered nicely from the previous day’s drama, she was talking without any real issues, still confused about things, but looking like a million bucks! The roller coaster going up!We hopped in an ambulance and made the journey 40 minutes to Westville hospital for an MRI, this was the scan that we had all been waiting 2 months for, but now none of us wanted the results to. Jess was restless and not able to stay still so they asked me to stand in the room and hold her still, I noticed she had earplugs but didn’t think to ask about that”¦ until the machine started, it nearly blew out my ears drums!As we rode in the ambulance back, Jess lay there, asleep, her face looking vaguely familiar, my doubts were doubling up on themselves and I feared the worst for the scan results, considering how bad things were, logically the scan wasn’t going to be good.There wasn’t long to wait, Dr Nad Govender, Jess’s neuro surgeon arrived after a few hours, he grabbed the disk, popped it into the computer, turned and looked at me and said..

“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.

Jess passed away today at 7am, her mom, Danie and myself were by her side, holding her hands when she took her last breath.

10th May 2014
“Esmerelda”
by Ben Howard

Oh, blinded, now I see
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.

S.

P.S…. here is the tribute video Jimmy did of her beautiful life.