Friday, April 26, 2013

Blood Test Results and Moving Forward.

Blood Test Results and Moving Forward. 

A short update, as I would like to have a larger blog entry after the Tour de Cure Ride.

Last week (Wednesday 24th May) I had my follow up appointment from my blood test the week before. I am not as nervous entering the oncologist office for my blood check up. I am not sure why, but maybe because bloods are accurate, but not at definite as Scans, which I am due for in 4 weeks.

The results were ‘pristine’ as my oncologist explained. He said out of all his patients on the Dabrafenib medication, I am his healthiest and fittest looking patient. I took this as a huge complement. My LDH levels (tumour marker count in your bloods) were the best they have been.

I feel great, my energy levels are improving and this for me is a great sign in seeing improvements in my health. I am enjoying being back at work for Term 2, teaching my Year 5 cherubs. They have been working hard.

I’d also like to take this opportunity to thank Bruce Oakley, my teaching colleague who has been driving me to and from work since my seizure. The support doesn’t end there, John Stevens another mate of mine has been taking me to the gym to participate in the spin class.  Thanks to the both of you.
The Birthday Girl 
In the short time since my last update, I have been involved in a Skype Conversation with Jay Allen from Sydney and his Melanoma Support Group. This was an excellent opportunity to share my journey and story so far. I also met, during the conversation, Marie who is on the Dabrafenib medication I am currently on. She has been on it for 20 months or more and doing really well. Hearing about this made my confidence in the medication increase even more. As I am always worried about when I will become immune to it and then the battle will really start.
My gorgeous family

I have also had a large group of educators visit my classroom and allow me to share my passion for E-Learning with them.

Ariella our eldest daughter had her 6th birthday party last weekend. As always, my talented and gorgeous wife put on the best party food, cake and decorations for Ariella (photos below). Ariella and her friends had a fantastic time.
Amazing Food for the Party
The Rapunzel Cake
Amazing Food for the Party

Amazing Food for the Party

I will admit that I did have a tear in my eye, as I was thanking people after we blow the candles out. As April is also the month, 12 months ago, I was originally diagnosed with Melanoma. I feel I have reached a milestone here in seeing another birthday, but at the same time I have a hint of sadness during this month on Ariella’s birthday as I feel, ‘How many birthday’s will I see from my four amazing girls?’ (Wife included here).
My most favourite people in the world and biggest supporters
I am sure those who are reading this blog who are going through a similar journey will understand how I feel. It is tough to think that unless they find a cure or I somehow become a miracle Melanoma Patient that the day might come when I am unable to fight anymore, but with my attitude, support and determination this day will hopefully never come. I am making the most of family, work, my passion for cycling and friends.

The coming week I am off to participate in the Tour de Cure ride as a guest rider over two stages. Stage 6 Bendigo to Benella (173km) and Stage 7 Benella to Albury (111km). Thanks to my awesome father, Michael Jones who is driving me to stage 6 and staying as a support over the two stages and to my family for letting me participate. If you are interested in donating to the Tour de Cure ride click on this link.

My training had to step up and things have been going very well. I am now averaging 140km a week with my riding mate Matthew Collins and we have increased our tempo each week. I am excited about this Tour. My goal is to do as much of the distance as I can and inspire those on the ride and those who are not riding to push on with whatever they want to achieve in life. It is important to note that I don’t see myself as inspiring in anyway. All I really want people to see is that if you put your mind to things life moves in a positive direction, with success being the ultimate goal.

I will keep you all informed with the tour via facebook and twitter (@elearnjones) or follow @tourdecure_aus hash tag #tdc_aus.

My next blog post will be about the tour ride and travelling with my wonderful dad, Michael Jones. 

Thursday, April 4, 2013


A Poster that sums up what I am about lately

Easter morning, Kalita
An up and coming challenge to say the least has landed in lap! I have been invited to participate as a guest rider for two stages of the Tour de Cure. Given I thought I needed some more challenges in my life I have decided to accept this offer and it will mean I am joining the amazing Tour De Cure Crew Riders for stages 6/7.

Special mention to Dennis Gentilin and Martin Duffy from Office Works for encouraging me to apply and follow through with this exciting journey.

I am now also required to raise funds as a participant, these funds will go to cancer research or cancer patient needs. The link below will take you to my donation page. Feel free to donate or pass the link onto people interested.
Thanks to Sean Young and Peak Cycles for their donations,
along with Simone Griffith from my work for her generous donation, Jeremy Kwok from my Apple Educators Community for his donation and my riding mate Andrew Hull for his contribution. 

Easter morning, Ariella
As I am unable to drive due to my recent seizure, I am going to be driven to the Tour De Cure stages by my dad (Michael Jones), who has kindly taken time off his work to drive me and spend time with me on the two stages. I am looking forward to this bonding time with him, something I have not done with him since the days he coached footy.
My Very Supportive and amazing Parents. (Alvie and Michael)
In the past few weeks my riding has increased in km’s each week, I am feeling fitter and stronger than before the seizure two weeks ago. Today I rode with a good mate of mine Adrian Parke and his sister’s boyfriend, Vance.

Easter Morning, Zahlia
We headed to Whittlesea and back. Which was a great mornings ride. Something that has left my legs feeling worked. The total distance I rode today was 75km with an average speed of 27.5km/h. I now feel stronger and more confident riding stages 6/7 of the tour, which total in distance of 284km. This week has seen my weekly riding total go from 110km to 155km. I am heading to an indoor session tomorrow, which will be like a recovery.

One of the many aspects of riding I love is improving my fitness and the time I am out on my bike, I actually don't feel like a cancer patient. I feel human and normal. This then spooks me when I return home and look in the mirror to see 'baby fluff' hair and dark rings under my eyes. I am also reminded that I have Cancer at 5am and 5pm each day when I take my miracle drug. Which appears to be doing its job. Those are the times I need to take the medication. I have no choice in the matter. I am not the most reliable at taking medication. But so far, so good!

I also ventured to the hairdresser this week for the first time in 6 months. My hair wasn’t unruly or needing a cut. I just felt it needed a tidy up and see if cutting my ‘fluffy duck’ locks might stimulate more growth or increase my appearance from cancer patient to a man who looks balding or middle aged.

My eldest was puzzled as to why I was having a hair cut. She said, ‘Daddy you don’t have any hair to cut.’ Thanks for your honesty kiddo. Kids are so honest. We need to appreciate kids honesty more often!

I have forgotten to add that I am feeling very good, no issues with medication or new tumors appearing. To add to this I am obviously improving in my energy levels.

I hate to rub it in to people reading this blog, but I am enjoying my Easter holidays. Spending time playing, Draughts, Dominos and Uno with my girls and being beaten by them.
UNO with Ariella

My Fluffy Hair and the girls.