The HALO Team Rides from Gqeberha to Cape Town for CANSA TLC
The HALO ‘Helping a Little One’ Team are, once again, cycling from Gqeberha to Cape Town to raise funds for, and create awareness of the Tough Living with Cancer (TLC) programme managed by the Cancer Association of South Africa (CANSA) which supports children and teens with cancer.
The HALO Team is headed up by husband and wife, Hennie and Anita Prinsloo, and team members are Andrew Woodburn, Yasmina Nagdee and Brenton and Adele Long. Stan Paton and Christo Naude from Think Bike Marshalls will be assisting as Marshalls supported by back-up vehicle driver, Arashad Moosajee.
This will be Hennie’s third tour in support of CANSA. This journey is a very special, and personal, one for the team.
Hennie explains, “It’s important for us to be the voice for children living with cancer as they need to be heard. They need our help to get through the cancer journey and treatment. Too many never even get the treatment and support they need. And we can help in our small way by raising awareness and funds towards CANSA’s TLC programme.”
Team member, Andrew Woodburn whose daughter, Indigo, was diagnosed with Ewing’s Sarcoma at the age of four adds, “My calling to ride this event was following on my journey as the father of a cancer warrior.My daughter is now eleven years old, and we finished treatment in 2016, which means that we have made the post five-year treatment and she has doubled her age, post diagnosis – so we keep our fingers crossed.” Read Andrew’s blog where he shares about the cycle trip daily, and also his insights during his daughter’s treatment…
In South Africa, between 800 and 1000 children are diagnosed with cancer each year. Sadly, it’s estimated that half of the children with cancer in South Africa are never diagnosed, while many others are diagnosed too late when the cancer is already at an advanced stage. This is due to a lack of knowledge regarding cancer and how it presents in children.
CANSA’s TLC programme aims to raise awareness of cancers affecting children and teens and the importance of early detection. Parents, families, and guardians can join our Facebook Support Group: CANSA TLC – Childhood Cancer Support, to connect with others in a similar position, or they can access CANSA Tele Counselling which a confidential, professional, cancer-related telephonic counselling service to cancer patients, caregivers and their families and parents or guardians of children living with cancer. Counselling is available in seven languages (English, Afrikaans, isiXhosa, isiZulu, siSwati, Sesotho and Setswana) and is free of charge.
CANSA TLC also provides home-away-from-home accommodation for children, and their parent or guardian, who stay far from their treatment centres at the TLC Lodges in Polokwane, Pretoria, Durban and Cape Town.
The Halo Team leaves Gqeberha on 5 March 2022 and arrives in Cape Town on 11 March 2022. They will also be participating in the Cape Town Cycle Tour on Sunday, 13 March 2022. Adele Long, HALO Team member says that “Cycling for a good cause makes it even better.”
The full route is as follows:
- DAY 1: Gqeberha to Storms River – 174KM
- DAY 2: Storms River to Plettenberg Bay – 75KM
- DAY 3: Plettenberg Bay to Mossel Bay – 152KM
- DAY 4: Kweekkraal to Bredasdorp – 146KM
- DAY 5: Bredasdorp to Franskraal – 76KM
- DAY 6: Franskraal to Pringle Bay – 104KM
- DAY 7: Pringle Bay to Constantia – 94KM
If you would like to support The HALO Team’s efforts for CANSA TLC, deposits can be made using the following details:
Cancer Association of South Africa
Account #: 9282709835
Branch Code: 632005
Swift Code: ABSAZAJJ
Please use HALO2022 + your name and surname as reference and email proof of payment to email@example.com
HALO Riders’ Blog – by Andrew Woodburn
DAY 1 HALO for CANSA – PE to Storms River 185 km
A special day since it’s the longest and first day – but spectacular weather, ocean views, wind turbines, J-Bay, vistas , reasonable roads and having following cars and think BIKE marshals.
Quote of the day – “we have the most beautiful country in the world with one of the most broken governments”.
I rode 100km with pink wings today- that’s a first!
The cancer journey- DIAGNOSIS
Today I cried, not because of the ride , that was beautiful, but because I went back in my mind and in my Facebook journal to reflect on this part of the CANCER journey. To be honest some of what happened I have either forgotten or deleted from my memories, maybe to better move on from that terrible tragic time when our innocent child of 3 was diagnosed with cancer, and that triggered some deep emotions. When it happened (last quarter 2013, MRI 2nd Jan 2014) we had to wait to find out what it was – things I didn’t even know weren’t instant I had to learn about.
Tumour biopsies and slides , scans , blood tests, hospital units, drug regimes, catheters, and so on. For a parent this is totally mind boggling and I have a science background. As a parent I and my wife knew INDIGO our child had a problem and I thought the diagnosis would be clear and fast. On reflection this is probably the second biggest disruptor to my existence at that point, the first being the actual message that my child had CANCER.
The Sheer enormity of the discovery completely upended my existence. How will we parent our 1 yr old while our 3 yr old gets treatment, how will work and money play out, how long will this go on, what do we do next and of course – WILL MY CHILD MAKE IT.
My big learning when I look back if I were to offer it to other parents, is the “tenacity of persistence” when we knew we had a problem – we kept going, multiple doctors and tests and kept going until we got the diagnosis – without this the cancer may have gotten to a much more advanced stage where a chance of recovery may have been much less likely, and still the tumour and it’s effects were significant and impacted her body extensively.
I still remember thinking to myself once we knew what we faced – “can we just keep her alive for 5 or 10yrs because if she hasn’t recovered by then maybe we would have better treatment options which would give us a chance to go further”, that was the best I could have dared try for and was reflected today on our ride by Hennie Prinsloo the organiser of this HALO charity ride, who rode the furthest he ever has in his life , who pushed through heat and cramps and beyond his personal boundary to complete the day – Inspired by Indigo” as designed on the back of our ride jersey.
The honouring – Medical staff
This day is dedicated to all the medical staff from the receptionist at the Donald Gordon Hospital who came to know me by name, to the night nursing shifts, to the cleaners who empty hospital bins to the highly trained peadiatric oncologist panel in Joburg. To DR DAVE RICHARDS who made the breakthrough, to the famous ST JUDES in the USA which put our case on their panel, the radiation centre and hospital which gave INDIGO a free round of chemo in NEW JERSEY, USA, the radiology team and Dr David & Kiki Marx siblings at Sunninghill hospital. There are many more that gave advice and service to us from many other fronts – these people are the first group of Angels who assisted selflessly over the years and without which we would have been clueless and useless. With out them and medical science – even if I was frustrated and confused at times Indigo wouldn’t have had a chance. I had to learn to work with them, learn from them and then make the best decisions I could for INDIGOS future.
DAY 2 HALO for CANSA – Storms River to Plettenberg bay 80km’
Day 2 dawned fresh and cool in the Tsitsikamma forest reserve with a wonderful still sunrise on our way to the descent into Bloukrans valley. Climbing the western side in the dawn light was spectacular and the rolling road toward natures valley resurfaced was a line straight through indigenous forest before descending on new tar into Natures Valley. Our pit stop on this shorter day was a connection to our planet, the source of life itself and survival, where we took off riding shoes and waded amongst the fish in the lagoon and then had some photos in the clear ocean. We could see Plett but had a way to go first. The call for a coffee and big climb out the valley meant we had an impromptu stop at the farm stall with a proper jam and cream scone for second breakfasts. Easy riding got us to Plett even though the heat was blistering 36 degrees Celsius and we had lunch at the lookout deck. A shorter day with different experiences allowed for a refuel before a long pull tomorrow. The ride crew are my community for this week and we all rode well though we have different speeds on the hills.
The cancer journey – SURGERY
Surgery is a funny thing, the body is being invaded and things can go wrong. ANAESTHESIA is both an art and a science but without it the surgery can’t occur but it made me as a parent have to practise saying goodbye, something I didn’t want to have to get good at in case I had to do it one last time. The blessing was that Indigo was just courageous and brilliant at breathing in the balloon. Indigo had 3 surgeries – the first was in those early days when we needed to get a piece of this tumour for investigation. I recall karma was on my side since I had actually chatted to the surgeon a week before while riding my bike not even knowing we would ever meet again. Chris was thorough and even got a specific briefing from Prof Poole about this surgery since this tumour was close to major nerves and went into the lower spinal column in the classic dumbell shape. To start he had to remove her coccyx which then lead a long procedure – but when when he reviewed with us, he had cut into the one side which in his words was the size of a squashball and it had collapsed so he removed that entire part of the tumour. Once that surgery had been completed we were truly in the hospital-living-routine, spending days in Sandton Clinic.
The second and third surgeries were port related – port in and port out. Jerome did both of these and they went smoothly even though the PORT was a major assistance to treatment it also was a major hurdle for indigo to get through. Every time we went to hospital they had to connect into the port which was traumatic for her. Even though she was a true Warrior this was accomplished with screaming and struggles – a real test for her / us and the medical staff. The removal was so fast and today I can’t even see that she carried her port inside her for years.
BUT that wasn’t the sum total of surgery for a pead oncology patient – the biggest surgery didn’t even involve indigo. The decision to attempt a surgical intervention into the lower spine to attempt to remove the other half of the tumour really took Clara and I to the brink.
We researched this surgery globally, the risks were immense since the tumour had grown around the nerves descending from the spinal cord down into her pelvis and legs, one slip of even a millimetre could leave her paralysed for life. We consulted widely. We agonised and we tried to weigh up our options, we didn’t have endless time since once we started radiation we couldn’t then go back and do surgery through the spinal bone after radiation so it was a now or never call. This call was only ours to make – there were multiple different opinions and massive risks – we finally determined to leave that part of the tumour inside our daughter even though if you research the statistics of cancer recovery the best results come from doing all 3 types of treatment- surgery/ chemo / radiation (at that time , there were no immuno treatments or stem cell options for a Ewing’s sarcoma).
So even today that piece of tumour sits in her lower spine – we hope completely inactive due to chemo and radiation. I forever pray we made the right call and i carry that single decision with me forever as a parent – a call we never had the option to remake.
My learning for other parents on this journey is to know that you won’t know it all, to know you are doing the best you can with what you have at that point in time and there often isn’t doctor who will make the real hard calls for you.
The honouring – The Community
This day is dedicated to those who rose up, those who selflessly gave their time, their energy, their care, their food, their company and comfort.
In particular there were 2 moms who went before me who took me under their wing in the early stays in hospital and they taught me the ropes – to Dr Sinola Rajaram mom to Yeshai whose insight knowledge and love as a cancer parent and Karlien mom to Kaylin RIP, who we shared ward space with in both the Sandton Clinic and Donald Gordon Hospital and literally who adopted Indigo and I, specially in the evenings – know we are a product of your love and care.
To those who asked the questions directly and carefully and those who created support for us. I called this “community energy” when asked about the things that helped us get through. It included everything from the meals that were delivered by a group who rotated each week, to hospital visits in the late evenings by my friends since I did the night shift who would bring coffee and biscuits for us to sit in the corridor outside the ward after indigo had gone to sleep, Facebook posts, photos of candles lit in different parts fo the world, knitted hats, scarves, quilted blankets, blood donations, dedications of personal efforts and hardship in events, cards, shaved heads, personal WhatsApps at midnight (Doctors, Phillipa and Nic – who never seemed to sleep – Nic you were a real crutch to my mental survival for which I’m forever grateful), Nandos vouchers, bike riders to our hospital windows, educational toys for Indigo, the famous present box by Tessa (a box of small presents that Indigo got to have 1 per day while we were in hospital, plus a giant Pooh bear), and then the support outside the hospital to me – the MKP igroup and organisation as well as ICG and Spruit Snakes and Bompas Boys who would ride bikes with me no matter how slow or unfit I was due to no training or sleep. Truly those bike rides were my outside salvation and meditation after spending all week in a hospital room.
My learning here was that there are so many who I expected nothing from – who rose to heights completely unexpected – I am forever grateful to all of you – too many to mention here , you know you played a role and for that thank you. I continue to post good news in the saving angel indigo group as a annuity happiness reward to you all.
My community for this week are cut from the same cloth – putting both their time and personal endeavour front and centre for raising funds for children and parents who need financial help just to have a chance at seeing another day / another year together. So much gratitude to the cyclists Hennie, Anita, Adele, Brenton, Yasmina, the THINK BIKE marshals Stanley & Christo (true guardian angels) and driver Arashad as well as our sponsors assisting us on the ride.
DAY 3 HALO for CANSA – Plettenberg bay to Mossel bay 154km
Day 3 started before getting out of bed. If you cycle regularly the first thing that hits you before your feet hit the floor is the sound of the wind. We had a long way to go and the wind was blowing strong westerly into which we had to go head on. Climbing out of Plett in the dark I recalled to my two cycling partners for the day about Chemotherapy and unexpected other infections. Since today was a Monday, the day Chemo used to start for Indigo, I recalled that our family would have fish and chips for Sunday evening before chemo weeks. BUT there were times when, like this wind, we had infections that meant emergency runs to the hospital that would then delay chemo till the infection had been recovered from.
Today was like those days – SH1T happens and you have to get your head down and pedal. We rode day 3 under heavy grey clouds all day with a fresh to strong headwind with only 3 of us for the first half and a fourth for the second half. The team today all had to pull for long stretches into the wind, just like chemo, we had no choice, just get on with it. We had a few highlights such as beautiful ocean and lake views the steep climb up wilderness heights road and into 7 passes road that I last rode on my Cape Epic in 2008 into Saarsveld George. Some hike a bike through the construction site saw us in George and then a big pull on N2 all the way through to Mosselbay with views over Groot & Klein Brak rivers.
Today, like chemo, I reflected that every small thing counts together to get the entire process done without a hitch. Aero / team work/ route management / expectations/ flexibility in the plan / finding the small enjoyments in the bigger hardship.
To my 2 cycling partners who stepped up and rode at a whole new level thank you for your company and dedication, it made the day a life experience rather than a trial and tribulation to be forgotten.
The cancer journey – CHEMOTHERAPY
CHEMO is like putting weed killer in your child’s body – it effects the tumour but also has side effects on the rest of the patient. Our chemo journey was long – 15 sessions which actually covered years and the most clear recollection was that the Warrior Indigo only vomited once – ‘ ONCE‘, and that was because the nurses came 10 mins late with kytril, the anti-nausea drug. She really was a Warrior taking the chemo, she was like a giant in a small body, she would wear the compressed cardboard vomit bowl like a hat with a big smile on her face, laugh at little things, wee on command from me since her little body was flushed with litres of fluid to clear the kidneys, and she lost all her hair. EVERYTHING even her little eye lashes. The best I could do for her was to tell her that her little smooth round head was “my favourite head” after which I would plant a father’s kiss on the top before replacing her hat / beanie.
Today I shaved my cycling legs in solidarity of hair loss by cancer patients – the effect on them and their loved ones
If I was to offer some reflections for other parents I would share that this part of the treatment is a real endurance event, it goes on and on, it wears the patient and the parents down bit by big bit, white blood cell by cell, infection and isolation by chemo session.
I would advise you get to know each chemo medication and how strong they must be and in what order they are delivered and how to remove air from the lines and how to operate the infusion machines and how to have a sixth sense when the lines are blocked and and and and ……. you get the picture.
Because stuff happens in an endurance event, you the parent need to know what to do, I even got trained on how to administer injected bone marrow stimulant when the immune system was so low that we needed to boost the bone marrow to produce more white and red blood cells, even after we had had blood cells added in to her small body.
We needed the injections so we could go to radiation treatment in the USA (I even carried a cooler with ice packs of these preloaded injections to the usa and had to administer them there since American doctors wouldn’t administer a drug they hadn’t prescribed).
Own this damn process! You will feel more in control and not be a victim to it and that will help it pass.
The honouring – the Science
When we entered into this process we had so many unsolicited pieces of advice. You would not believe the recommendations, the conspirator theories and the alternative suggestions.
Now I believe that every person has the right to their own views, BUT Clara and I only had one daughter in this and we didn’t have the time for experiments so we backed the best science we could at any major decision. We used the best scanning tech, the best medications – (thanks to St Jude hospital, who, after we applied had us on their panel which gave us the peace of mind that we were on the same chemo regime as they would have had us on in the USA), the best food we could get, the best sanitisers at home, the best behavioural protocols, the most well constructed programme we could adopt.
We followed the prescribed approach for port management even though she could have had a problem port by just bad luck, we researched the science globally and while confusing at times we wanted to be educated and knowledgable – yes this at times did frustrate the doctors since I think we were their worst nightmare since we knew a little but not enough, we were not doctors BUT Clara and I could ask the right questions and sleep at night, since I felt we had made the best decisions we could based on solid facts and tested science and medication / procedures.
I also knew we were part of the giant experiment on paediatric oncology patients – why an experiment? Well most of the money for cancer research goes to adult cancers and children get to use those medicines but at different doses – for that reason I signed the release form that Indigo’s case and results could be used for medical research – so that every child following our journey would be one step closer to better treatments than we had.
I made peace that in 5 or 10 years there would better and more custom treatments and send my blessings to all of the researchers, doctors and scientists working on oncology medication to make their break throughs as soon as they can.
PARENTS, may you be blessed with the fortitude and patience to endure and emerge from the CHEMO tunnel!
DAY 4 HALO for CANSA – Kweekkraal to Bredasdorp 146km
Day 4 followed overnight rain, so we started in the dark with foreboding cloud cover keeping it cool on wet roads but windless. The cycling threesome headed towards Heidelberg with Think BIKE marshals in attendance along 21km to breakfast at Wimpy. This made the bike marshals very happy. After breakfast we continued down the N2 under threatening skies towards Swellendam passing fields of ostriches and wet brown post-harvest rolling hills since this area doesn’t get rain at this time of year.
The time flew by when we had the task of pedalling continuously and we got to Swellendam passing Trudouw pass which we all know from riding the Double Century. Brentons car had a puncture when following us from a metal bolt straight into the tire sidewall which meant he had to call out assistance and have a tire ordered since the town had no stock. We snacked at Tredici with proper scones, jam and cream and luxury hot chocolate as the weather was coolish and when cycling hundreds of km these treats are perfect to lift the spirits and the calorie count.
It reminded me that even in hardship I need these small occasions of lightness and joy to keep pushing on.
Leaving the N2 put us on district roads with more rolling hills, birdlife, scenery and a freshening wind on the left shoulder. The good news was we had avoided rain on us but even though that was worth celebrating the last 30km of rolling hills were testing the body, but we made it into the village in time for washing and admin. Day 4 done – gone like a scone!
The cancer journey- RADIATION
RADIATION is serious science where the tumour is directly focused on by a beam of particles designed to break those cells to prevent them from replicating. As with many treatments there are side effects and radiation effects are that these particles also destroy other cells on their way through the body.
Now the thing with our tumour is it’s in the same area as some organs and the ovaries and the hip joints and spinal bones, all of which are susceptible to damage. Clara and I had to grapple with this dilemma vs losing our daughter and as mentioned yesterday turned to the question “what is the best science for our challenge?” In our work we learned that there are two types of radiation treatment each using a different charged particle Photon and Proton radiation.
Unfortunately only Photon was available in South Africa and that treatment was sub-optimal for our requirements with Proton being available in only a few places globally, as it was a much newer treatment – Poland / India / Switzerland / UK was building units / USA – We decided the collateral damage of this treatment was less and we would have a chance of saving Indigo’s fertility so this was the best for us, BUT we would need to get into one of these units and pay for it in hard currency.
When one of the doctors found out the price they categorically said that if it were their child they would never pay that fee and rather
use the treatment in South Africa. This was a key learning for me as I realised for the first time in this journey that we looked to the doctors for counsel on everything and most of it was good BUT in this case it hit me like a brick to the head – THE DOCTORS WERE RESPONSIBLE FOR THE TREATMENT – I WAS RESPONSIBLE FOR THE FINANCIALS. I needed to make the call about whether our medical insurance would assist in this process and if as a family we had the financial ability to buy this treatment- we approached this with the same rigour as everything we had done this far and applied for the special support needed by our medical insurance, but learned that they would assess the request with a panel and then only refund a limited portion of the fee after I had paid it myself first.
Fortunately we had the means to choose and activate this treatment, but I learned that for many families the financial burden of cancer in your child can be a make or break element to treatment specially if you are based in a soft currency, emerging market.
I needed to know every line of the fine print of our medical insurance. I needed the paperwork and supporting material to request support and this in itself was an admin mountain to climb – if someone in the family isn’t on this, it could mean time delays or refusals for payment or treatment – this a lesson for all parents – master the fine print, it may be the last thing on your mind, but it is so important.
The radiation was a complete sucess – we chose a global specialist Dr Eugene Hug who had just opened a new centre in New Jersey, USA, which had the added benefit that the country treatment took place in, had English as a first language (something we had been advised about) and that my sister-in-law and her family lived an hour from the centre and had the generosity and space to put the family up for the months it took for the treatment to take place. I would fly with all the girls to get them settled in and complete the bone marrow stimulant injections, then return to South Africa alone for work. I’d return for Indigo’s last week of treatments and a short break afterwards in the USA summer (kindly provided by Mariana and her sister).
We felt we made the best call and were happy with how it turned out, but of course will only know how it affected our daughter over time. Will her hip joints and bones and fertility (ability to reproduce) be at the level we wish for her? Will the reduced other damage pay-off over the rest of her life? We will have to wait and see…
The honouring – the Family
When people ask me how we made it through this, I respond by saying the three pillars of support were the medical teams and science, the community energy, both of which I’ve honoured on days of this ride and next important pillar is family – family are the inner circle of those who are bound by blood or connection to be intimately involved in the journey – regardless of sucess or failure.
We called and they came – special people came and lived in our house for weeks, they shopped, they cared for Jasmine, they planned, they just formed a foundation for Clara and I to work off. The first to arrive was Kim Woodburn who dropped her life and own family and arrived to the tragedy of diagnosis and uncertain future with a 1yr old in the house. She was followed by Richard and then Rachel, the Simper siblings, who with similar dedication travelled round the world to support us. Arriving and taking control of both practical assistance and emotional upliftment.
The next ring was that of godmother Martine and godfather Jody, who really took it upon themselves to either do time in the hospital or at our house, provide emotional support to Clara or myself at anytime and just in general be there. These people were the cornerstones of family for us and between them was the space for the community energy to fill in.
For shorter times there were also other parents in the hospitals whose children were in the same processes at the same time as us who could empathise and assist – this bond of alignment really helped during isolation / infection treatment since we couldn’t have external visitors in the hospital during these times.
The lesson for me here was that if you are a family member reading this, to help, you really need to be in it in some daily form to assist, offer this and deliver it, now is the time of need for your bloodline, now is the time for action if possible.
DAY 5 HALO for CANSA – Bredasdorp to Franskraal 116km
Day 5 and I think my body is now in the rhythm of early rising and hard physical days. The last time I was in Bredasdorp with a bike was for the Cape Epic 2008. I didn’t even get into the town so having dinner at the black pearl on the stoep set me up for a good sleep and the distance today was shorter with flat sections of overberg landscapes, a mountain range covered in a dollop of low cloud burning off in the morning light, a light breeze and fun spin to Elim where we stopped at the church for a group photo.
We rolled on easily towards the sea and the expectation of ice cream at Baardskeerdersbos but were thwarted by loadshedding which rendered the ice cream machine defunct. Accompanied by music on a speaker and photo shoots for the cyclists we crested the big hill for the day and descended to Franskraal where the air was refreshingly cool coming off the cold Atlantic Ocean. Four cyclists decided to take an extension to Pearly beach and back which rewarded us with serious choc milkshakes and return to our accommodation where multiple work sessions awaited on Zoom.
The cancer journey- Rehabilitation
This cancer journey never really ends. This isn’t an illness my child recovers from and even more important is that, I as a parent won’t recover or finish with this until the day I breathe my last breath. Once the formal treatments end so begins the long tail of what I call rehab or living with the shadow of the beast over our shoulders. Testing continues regularly, covering MRI scans, sonar scans, bloods, and other assessments over time. These linger in our lives disrupting school for our child and both Clara and my lives with touch points where it feels like even though we’ve prepared for an exam we still worry about the result.
Indigo has adapted incredibly well and while she ongoingly takes chronic medication for some residual effects and seems to be able to live life as a outgoing and confident youngster, we still need to see how the teenage years unfold. There have been moments of joy for me as she shakes out her full long hair and wins swimming races, proudly presents her academic achievements and engages with friends and her sister as any child would do. If you met this young girl today, you wouldn’t know her fight with the beast and for that, in most ways I’m grateful.
For me it’s been a different process , the first being recovery following the survival environment of diagnosis and treatment, and then rebuild, where as a father I invested in our little family, in my marriage (a social worker told my wife and I during Indigo’s first surgery that the divorce rates in parents of a cancer warrior were over 60% and if their child was a terminal case way higher, so we had better make a choice to invest or risk being a statistic), in my business and the colleagues who walked with me through the challenge. I needed to process my predicament and to an extent steered away from anything to do with childhood cancer.
I just wasn’t ready to be engaged with it until this cycle trip that actually started as a shallow idea to ride a part of my country I’d never cycled, but then turned into a reflection of our fight and lastly philanthropic writings looking back to those years of fighting the cancer beast in my child and the wish that maybe something I learned or experienced would help other parents and their children to complete it better than we did. I’ve tried to be candid and short but the details could be an entire book. I also know that we could have just as unluckily been here with no daughter, with pain and loss and confusion as to why this happened to us.
The honouring – Clara and Jasmine Woodburn
Mrs and Ms Woodburn, aka mommy and little sister have had to bear the cross of this battle they never chose. Jasmine has been an unexpected blessing for the entire family with a wonderful disposition of kindness and tenderness, and even at the age of 1 when this all happened, she just carried on with growing and smiling and was a silver lining to dark days and nights in hospital.
I honour her unconscious love for her big sister and remember her wanting to go with me to the DH quad where we could wave to Indigo through the windows when she wasn’t allowed to enter the children’s ward due to being so young that she was deemed an infection risk to the patients. Indigos warrior spirit was metered out on Jasmine but she absorbed it all and learned over time to resist and balance the tornado her sister can be. To my sweetness Jazi may you be blessed with joy and love the rest of your life to make up for the generosity of care you provided in your early years.
To my wife and co-parent, travel partner, bike riding buddy and lately work colleague, Clara – together we made a team that navigated this battle. You applied all your energy to keeping your baby alive, to persisting when the chips were down, to holding strong your position whether to doctors/ other parents/ schools and more – you are your version of the TIGER MOTHER – maximum traction on the target of your focus meant that results were achieved in a space where there was never a guarantee.
You had to trade off mothering your other baby for your first born, you burnt out in hospital rooms everyday and raced back home to breastfeed your 1 year old at night. This was a challenge no mother signs up for, but when presented with it, had to hold the line and drive forward with everything you had. You braved your own fatigue, insecurities and issues in a place you remind me everyday is not home. You reached out afterwards to try and help parents in the paediatric ward and play a role in the HOPE committee at St Mary’s and find wonderful places and adventures for our family to live life to the full since we nearly lost our first born, so there isn’t a moment to lose on squeezing this world for every drop of life.
May you be blessed with long life yourself, seeing your daughters growing up and leading their own lives and families in ways that reward the investments you have made in them. I am honoured to have had you by my side through that terrible tragedy that befell our little family those years ago.
I Love you Belle and Jasi.
DAY 6 HALO for CANSA – Franskraal to Pringle bay 118km
Day 6 started with an epic African sunrise across the mountains in the east at Cape AGULHAS, the southern most point of the African continent. The riding is flattish now and getting busier as we start to pass bigger towns now towards Cape Town. We decided to pass by Danger point lighthouse but due to COVID it was closed, so we did a photo or two there before the journey toward the West. The team was on good form rolling smoothly across the roses, happy to have left the rolling hills for the last few days behind – kind of like the cancer journey there are days when it’s easier than the day before and I always tried to be grateful about that since I knew there could be more hardship ahead.
The light tail wind was a friend today even though the heat build up hit 37 degrees Celcius. The rode was super scenic with the mountains to our right and the indigo blue ocean on our left. Tomorrow takes us into Cape Town and the end of the long tour but with the CAPE TOWN CYCLE TOUR on Sunday to come.
I can now feel some fatigue in my body from long repetitive days in the saddle and it reminds me of the long haul of the cancer journey where it never stopped and at a deep level , it just keeps on going.
The cancer journey- Today and Tomorrow
Being a cyclist I read all the books written on Lance Armstrong, his cancer journey is well documented including his treatments and even brain surgery. The learning I took from those readings was what he managed to do after his cancer with his body (excluding any judgements on what came out during his augmented cycling achievements).
I live in awe of my growing daughter in the time frame of today – she is strong, smart and athletic, has a warrior disposition that she applies whereever she goes and will need in the future to apply or dilute this as required – its a skill I am watching her work on even though she couldn’t describe it. She also seems at this point to have an adventurous streak and a love for the outdoors, doing zip-lining, rock climbing, mountain biking, segways and soon to be a scuba diver.
We have also started cycling together on our third-hand tandem and it’s an interesting affair. When she was still in the tail of treatment we came to Cape Town for a holiday, finishing with me doing the Cape Cycle Tour and she had said she saw a dad and daughter riding a funny bike in the race. From that day we have kept the dream alive that we’d be able to ride the most beautiful cycle race in the world together on a tandem ‘one day’, I think that day might be getting nearer and look forward to sacrificing my personal race to ride it with my warrior daughter, which would involve more joint training, actually a joyous time of chatting about the ride and other things she wants to chat about.
This is just one of the tomorrow dreams I have for us, I realised that even when she was sick I needed to have the tomorrow ambitions for her – where she could attend university and who she might become and what she might achieve, the option for her to have her own children and live a long life – this tomorrow view kept me balanced on why I had to carry the burden of the challenge that was on my shoulders.
I have a lot of explaining to do with my wife as to what actually happened to her as she matures and why we chose what we did and what the effects might still be in her future and hope she doesn’t hold any of this against us going forward. We always were clear that we would make the trade offs against saving her life even at the expense of some impairments. This will be difficult as for now she doesn’t really want to examine what happened to her and maybe, like I have, has forgotten or deleted these memories in order to be the best she can be for today.
I do see that the hospital smell and injections certainly trigger a throwback for her and that’s something I can support, but am blessed that for some reason she can find her warrior and do these tests and engagements with a positive spirit, and long may that last.
I hold on to the belief that the world is her opportunity and that with her warrior spirit and the experience she endured it will super-power this small person into some form of greatness.
In the interim we push on with the tests required and parenting an 11 yr old going on 20 something.
The honouring – Dad – Andrew Woodburn
I’ve had to look deep these last few days, riding the bike helped as I couldn’t talk while pulling on the front of our little peloton, so I had time to reflect each day on the ride, the cancer journey and the honouring choice.
I found that personally this cancer fight meant I had to use the traits I have. I was blessed with a healthy dose of pragmatism that certainly assisted my little family through the battle with the beast, a high level of energy (sometimes too much according to some) and a dose of basic bluntness stemming from my engineering studies and a funny ability to engage most people across a wide spectrum of backgrounds and education levels.
My curiosity assisted with learning about cancer and the treatments and science behind it and part of my gift to Indigo was making the cancer journey an education – we looked at chemo dosing controllers, air in tubes, x-ray machines, anaesthetic machine balloons, sonar scanners, hospital beds, drip stands on wheels (that she would ride when we went to the shop to buy chocolate for the night nurses on the last eve of our chemo stays), the port (that I have in my bedside draw, after it was removed post 2 years in her chest), and we made it an exercise to learn about it all just like school, I never hid anything about what all of this was there to do, I tried to make sure she understood what was happening, why she felt poorly and what we were doing about it.
Some times she loved it and sometimes she couldn’t do it, BUT the key thing as a dad I could do besides the love I delivered on “my favourite head” was to pour positive energy into my child. Of late I’ve begun to see, as part of honouring myself, the need to create rewards for me – this cycle trip is one of them – a big investment in training and 9 days away from the family and 5 from my colleagues at the office and globally.
I need to create windows to explore and enjoy elements of life beyond the responsibility of my roles which I probably take too seriously.
I’ve never been good at celebrations – basically because when I was younger it seemed a waste of time when the next task or challenge was in front of me – BUT this cancer thing has taught me that as a human it’s important to do this to reflect and enjoy the result – celebrate if we succeed – learn if we fail.
It’s still a work in progress and I get challenged by others and inside by myself when I make these choices, since people around me have to compromise – they can’t be my sole focus when I do this, but I’ve realised that without this, life will be an empty shell, a place where all the stress and hardship of this journey would have resulting in no silver lining, no joy, and what type of life is that!
I honour myself as the best dad I can be to my daughters and other young people I meet, as someone who takes a genuine interest in people around me and things going on – and try to share the things I do know, hopefully in a open way.
This realisation was so deep that I modified my personal mission to include acknowledgement and now my mission is:
As a man amongst men, I co-create a world of freedom and responsibility through decisive action, acknowledgment and inspiration.
I hope that if I’m in my mission, that this ride and what I’ve shared in these writings in some small way will have delivered those things to you the reader.
DAY 7 HALO for CANSA – Pringle bay to Cape Town Constantia 104km
Pringle bay is a smallish place in the open valleys of the mountains at the south east end of the False bay horseshoe and the traffic police escort arrived at 6:30pm, while it was dark outside and inside due to electricity load shedding. The early light illuminating the start point mountains of Franskraal was a reminder of yesterday and an ignition for today.
Day 7 had one of the highlight sections of the entire tour – Clarins Drive from Rooi Els, North to Gordons Bay on pristine tarmac in the sunrise shadow of the mountains with curves and low stone walls, coves, rocky and sandy beaches, crashing surf and a view across False Bay looking at Table Mountain complex stretching South all the way to Cape Point.
The views were spectacular both forward and behind to Hangklip, culminating in a coffee on the spur looking both ways where many photos were taken. It felt like royalty to have the the traffic police helping with sirens and blue lights as we passed through Strand and towards the road past Khayelitsha and into Muizenberg, with beach sand blowing right onto the road and ending at Surfers’ Corner. We made it – some residential roads to Constantia, 904km for me so far with Saturday and race day Sunday to come.
Just like the cancer challenge it was with a great sense of quiet accomplishment that we ended the touring portion of this cycle pilgrimage, to now be based in Cape Town for race day.
The cancer journey- the mountain and the beast
This is a fight or a challenge, maybe a mixture of both, since every day I felt I was in a long-term challenge to claim the mountain that is a cancer journey. It’s a constant battle, never letting up and always there AND then there are days when it’s a fight against the beast, different from just a challenge, it’s now a war, with critical decision points and tenacity and choices that must be made and we had no idea if those calls would mean there was a tomorrow.
The penalty in my parent-mind was not a fee or a consequence but the death of my little girl, in battle mode this is a real life and death thing and that spectre sat on my back each and every day, some days active and intervening other days receding to challenge level where I could see over the hill to the next hill. This challenge was like cycling, in that it was constant energy and uphill and as a parent my cycling assisted in relating to the fight as an event where I only had to two choices – pedal or give up – so I tried to start engaging the hills , learning about myself and the beast, so as to have a better chance of summiting.
At the end of treatment I realised how blessed I was that if this was to happen, I felt the age of my daughter was optimal – she was old enough to speak (3 yrs old at diagnosis) and share her feelings about her health and pain, but young enough to have complete trust in her parents and the adults around her who were trying their very best to heal her.
I send wishes and strength to those with babies and teenagers, both of which have challenges bigger than what we faced with respect to the patients’ mindset and abilities. In addition I know that there are many parents and patients with positive will who don’t succeed – I had to learn that this isn’t their fault, this disease is indiscriminate and takes even those with the most hardy of dispositions. That’s the tragedy of this set of illnesses – we just don’t know enough to predict or treat them all optimally – this disease called called cancer and our defense is a work in progress and each patient and parent is a contributor to that progress.
The honouring – Kaylin and those who have passed, those who went before us
This day was per chance a day we rode in black, a day of excitement and yet a day of sadness to end this little window of community and experience, a day to end the travelling tour and return to the world of race day on Sunday.
This beautiful ride along the Eastern shores of False Bay at dawn, was a celebration of energy and life, a day of reflection about the limited time I have on this wonderful planet and those who left us behind, before their time was truly lived.
The expression of the joy and wonder from children to their parents is a gift even in this nightmare of paediatric oncology, and then see the tragedy of life in their children’s eyes extinguished – not because of anything they have or haven’t done. The Prof told us when we asked ”WHY” / “WHY INDIGO” that in most cases the causes of childhood cancer were only due to two reasons – genetics/ hereditary (of which our type of cancer had no trigger that she knew of then) and environmental circumstance which she explained had no effect on a 3 yr old, since she hadn’t lived long enough to incur lifestyle damage – so what was left “bad luck”.
I still to this day grapple with how a parent might lose a child to bad luck, but at least to my scientific mind about 3 years into this journey, the Harvard Medical Review released a paper about how some of these cellular discrepancies resulting in cancer were just “bad luck”. This perspective in my rational mind makes this thing so much more difficult to bear, this lack of reason and fact. Hence I can only make sense of those who left us and couldn’t overcome the beast that they had light and love in their lives and gave medical science and the children to follow a small step up, a small step forward in our ability to treat and overcome this disease.
To Kaylin who we spent time with in the wards, and to the other children I saw leaving the wards in ways I can’t write here, and to all the children I didn’t know who gave their lives in this small step-by-step process against the disease, to all the adults and their families who have lost loved ones or colleagues (like my friend and colleague Brian and Cheryl Couzyn) may they rest in peace and look down on us and smile, in that we still should strive to live each day to its fullest and use each setback as a learning step, so those following us won’t have to endure the same challenges, but rather have better odds at overcoming this beast called cancer.
Day 8 – a easy nice weather spin in the Mother City
We delayed our start so we never had to ride to the start in the dark with lashing rain – good call!
We set off at a controlled pace, our little three person peloton – Yasmina, myself and Adele joined by Connor. We planned to stay out of trouble and rode our pace since the goal wasn’t race time, but rather to clock the 1000km mark and get round upright- some times agendas differ from the obvious and that is just fine.
It worked, slower on the slippery downhills and consistent on the flat and uphill still having a moving age of 29,5km/hr with all of us finishing together just like all of our previous tour days. We still made an effort to enjoy the tempestuous seas, misty low cloud on the mountains and the joy of cycling round one of the most beautiful cycle races in the world.
I did notice a lot of tandems with dads and their 12yr old children on the back – I know their ages since I asked all of them while telling them how well they were doing. This is my wish to ride this race with both my daughters when they are ready. I thank my two peloton mates who have just been terrific during that last 9 days but even more so for “WOmaning” up in wet, windy and cold conditions were your fortitude and sense of humour are tested as the rain lashed down.
Riding with shoes that feel like you have buckets of water sloshing around in them is a special kind of endurance event. I’m really happy with our ride since we finished upright and safe with all together and close the book on this very special cycle adventure, both brilliant parts of my country, pretty good roads, wonderful support driver and Bike marshals and with a bigger picture by the organisers of the Tour, Hennie and Anita Prinsloo in aid of CANSA’s TLC programme, of a cause very close to my heart – HALO – help a little one.
the cancer journey- the philanthropy of support
When I started this challenge in 2013 I heard about CANSA, CHOC, and “Reach for a dream”, I didn’t even know many other organisations exist such as ST JUDES in the USA, and other organisations set up and run by angels to provide care, support and financial assistance for those that are befallen by this disease in its many forms.
We were privileged not to need anything of what was available even though we were offered options.
At that point my perspective was that while Indigo was fighting her fight and looked to be making progress I’d rather other children who were not progressing, should get those options first and if we had turned for the worst I’d made up my mind then to accept the support based on our needs. It never came to that so I’m satisfied that some other children got the treatment or dream experiences that made their last days for themselves and their parents memorable, when everything may have seemed a lost cause.
It’s to these people and their organisations I send my blessing and why I also wrote these memories each day – these are the carers who make the difference in those dark hours. Please send a donation to them if you possibly can.
the honouring – INDIGO SAVANNA WOODBURN, my warrior child, spirited daughter and all round Inspiration
When I started out I was conflicted about honouring her on the first day or last day. In the big picture it was really no decision at all, she had to be the iconic race day, the most beautiful cycle race I have ridden and the event where cyclists throw it all down on the road, just like she had to through the treatment of her cancer.
We as parents did what we had to do, we had to abandon the dream of parenthood we had fabricated in our minds, as the journey we would have liked, and adjust to this unexpected beast and mountain that we found before us. We did the best we could my dearest Indigo.
You on the other hand were too young to consciously choose a response – you had to fly on spirit and courage, trust and tenacity. You had a true warrior spirit and I remember the endless finger pricks / port needles and other procedures you took head on with a trusting blink in your eye.
Yes, there were shouts and tears but you learned and got better at enduring these things. Actually the real big stuff like surgery you breezed and the achievement of getting to the point where you could do a whole multiple hour MRI without an anaesthetic, staying dead still was a tribute to your commitment and ability to listen and deliver. I laud your abilities and hope the learnings somehow stay with you for your life and serve you in the future in positive ways rather than serving just your survival.
I read about parents learning from their children and you certainly taught me many things about myself, and about you, that I wouldn’t have ever known, but for this challenge we endured.
I’m grateful for your calmness and courage and try imitate that, your endless curiosity and drive for what’s asked of you. Even though there are days when your soon-to-be-teenage-self tests my fathering ability, I always remind myself to treasure each day with you since there was a time I was taking photos of us thinking these might be the last ones I ever take.
I’m now blessed with the opportunity to come shout for you during swimming galas, climbing competitions, enjoy singing concerts and plays at school, and marvel at your artistic creativity and am so proud of your academic results. Even more special was to be there when you and Jasmine both paddled out to the back line for your first proper big wave surf session and to chat about the bush when we safari together. I look forward to many adventures together both travel, experience and your life journey.
I hope everything we chose and provide you, you use to the best of your ability and you continue to grow and thrive as a young woman who can change the world, who can befriend anyone, who is a critical thinker, a razor intellect and competitive sportswoman. Each day I only have one wish and that is we, YOU, are done with this beast, we summited the mountain.
YOU GO MY GIRL , MY POPPET , MY FAVOURITE HEAD . I love you my Indi!
DAY 9 HALO for CANSA – Cape Town Cycle Tour 2022 108km
That’s a wrap on a big tour for me – probably the longest distance I have ever ridden back to back over 9 days at 1092,85km with 9 844m climbing (my cape epic was 966km with 1 8829m of climbing on an MTB but I was a lot younger, 900km Joberg2c on MTB).
Thanks to all who contributed!
Please Help a Little One:
If this gift has helped you in anyway then please consider a donation – big or small to the children’s cancer charity below, it all helps:
Cancer Association of South Africa
Account #: 9282709835
Branch Code: 632005
Swift Code: ABSAZAJJ
Reference: Please use HALO2022 + your name and surname as reference
Proof of payment: email to firstname.lastname@example.org