Childhood Cancer, not a winner
It all started in October 2003, just after hockey season. I had a small, hard lump just below my knee on my right shin bone. Naturally my family and I dismissed this as a routine hockey 'knock' or any other kind of bump/bruise which I had a habit of acquiring. After a few weeks the lump started to hurt when it was touched and eventually even without being touched at all. So we phoned my granny,a physiotherapist, who immediately suggested that I get taken for an X-ray, my first of hundreds to come. I can remember going to see the Local GP John Donald, getting and X-ray and then going to see the Doctors in George who do something with nuclear medicine. This was inserting die into my veins and then watching it on a machine to see what was going on. We then went to the closest orthopedic surgeon, Dr Mike Verrier, in Knysna. Dr Verrier was the lucky man chosen to tell a small 12 year old boy and his father that the most likely diagnosis was that it was a cancerous tumor (he was right) and that from now on my life would be like a 'roller coaster' with many ups, and as I recall through my experience there were a few more downs than ups! Dr Verrier suggested we go to Dr Keith Hosking at the Vincent Pallotti hospital in Cape Town, my dad and I drove back to Plett immediately, packed our bags and headed off to Keith to get a biopsy.
I can remember my mom telling me how someone had got confused between a biopsy and an autopsy and phoned her to ask how my autopsy had gone , luckily I hadn't had the need for one yet! The Biopsy involved sticking a pretty big needle into my tibia in order to gather a sample of the tissue to find out exactly what was going on in there. As of yet the gravity of the situation had yet to sink in to my head and I was just happy to be away from school and on a nice holiday with my cousins in Cape Town. As far as I was concerned I had a new pair of toys that I could walk around on, my crutches, and my only inconvenience was that I had a very large bandage on my leg and there was a throbbing feeling everytime I moved. I solved this problem by not moving and just sitting around the house and playing Counter Strike on the computer against my much older and far greater skilled cousin Quiran. Eventually the break ended and the results from the biopsy came back with my parents worst fears alongside them. I, their 11 year old son, had a cancerous bone tumor in my shin bone, or as the doctors called it "An osteo sarcoma in my Tibia". To this day I can never remember whether it was my tibia or fibula and when asked I simply say it was my 'big bone'. For my parents this came as a massive shock, I was a healthy kid, I played provincial tennis, was athletic and a good hockey player, how could this happen to me?
The Red Cross
It was recommended to us that I get my chemotherapy sessions at the Red Cross Children's Hospital, conveniently just down the road from the Vincent Pallotti. It was here that I would receive 6 months of chemo in order to completely remove the cancer from my system, in addition to an operation to remove the tumor. I was to be treated in the Oncology unit 'G1' which was separate from the rest of the hospital and from my point of view, full of little bald kids. I was weighed, measured, poked, prodded, and injected many times over the next few days in order to determine what my chemo regimen was going to be, with children it is a whole different story to adults and great care has to be taken. The nurse who always took my blood was a woman called Helen, I think she must have put over 200 needles in me during my time at G1. The head of Oncology was a nice old lady called Proffessor Paddy Hartley, who was always very nice and very busy! The entrance hall had a cool duck floating from the roof which 'flew' when you pulled a string and lots of photos of old patients, both of which are still there today.
There were lots of children around the G1 unit all the time, various out and in patients came and gone, sadly I didn't make friends with any of them, Mostly because the majority of the children seemed to be in a much worse state than myself and we were all a constant focal point for our various friends and family. Chemotherapy really is a horrible thing, even thinking about it now, for my first session I can remember lying there with a plastic needle in my wrist with various chemicals pumping into my system. The idea behind chemo is that it poisons your body, the poison attacks the cancerous cells first but some healthy ones always get caught in the crossfire, so you feel AWFUL for hours on end! All the chemicals seemed to come in preparation for the big one, cisplatin, which is such nasty stuff that it is kept in a brown paper bag and makes your urine red. NOT COOL! I am unfortunately familiar with this because during chemotherapy everything that goes in is measured and so is everything that comes out, Its not very nice lying in bed next to a bottle of your own pee but hey, I couldn't get out of bed to go to the toilet anyway! After my first session I felt fine, I used to think that it wasn't so bad at all and that maybe I wouldn't feel the same as everyone else and hopefully I wouldn't even lose my hair. My chemo sessions were scheduled so that I spent one week on and three weeks off, eventually they started having their desired affect and wow did I feel it. Lying in that bed, sometimes all alone, mostly with mom or dad at my side, feeling worse than I could possibly imagine. Vomiting constantly, not wanting to eat, trying to eat and then vomiting it out. It was a constant, bad tasting circle of food! I managed to develop a liking to Sprite and used to lie on the couch in the kitchen while everyone else ate and I'd drink my sprite. Like I said the reason chemo is so effective is because it kills your cells, it also has an adverse affect on a lot of your bodies senses, both at the time and in the long run. As a result there were some foods which I suddenly hated, chocolate and strawberries for example (I still hate chocolate now), and some foods which I loved, I remember loving ricecakes and I now hate them as a result. I think the fact they came back up again almost every time I ate them contributed to my current hatred for them!
Not the HAIR!
I had always hoped that I would be a special cancer patient and not lose my hair, this didn't happen. In between chemo cycles I used to come back home and try as much as I could not to be the sick kid. Unfortunately this didn't work and a lot of lying around was done in front of the TV and con=mputer! I went to spend the night with a friend of mine, Daniel Bailey, and on the way back the next morning I ran my hand through my hair and pulled out a massive chunk by mistake...Damn. It was actually quite fun and by the end of the car trip home I looked like on of those old dolls who should have been put in the bin a long time ago! My mom took me to get my head shaved and the lady who did it had so much fun that she didn't even charge us! The downside now was that I had no hair, a new 'look' for me. I have bumped my head too many times in my life and my skull is not one that looks good without hair, but hey, I had cancer, noone was going to mention anything! (there had to be some upsides, apart from my new found computer game skills). When I was in G1 I had managed to save up enough money to buy a remote control car with a camera on the front so I could drive my car around the wards from my bed. I think I may have been quite an annoying patient in that regard. The car provided hours of entertainment. So did my mom who over the 6 months of my chemo must have rented the entire Simpsons TV series and watched them all with meWe also hired a lot of movies, our favourite since being 'Thunderpants' about a boy who ends up powering a rocket with his farts! We also tried to teach me french on a laptop, but I was really bad and the computer kept making rude sounds at me whenvever a got a word wrong. Obviously chemo sessions could be made fun from time to time by family, friends and toys but nothing can take you away from the reality of how awful you feel from the things going on in your body! The chemo burns into your veins and scorches the skin, leaving burn marks on your wrists and hand, because it is so bad for your body all your veins shrink in die off, towards the end of my chemo it used to take ages for nurses to find veins on my arm! Once when I came for one of my sessions the nurse put the needle into my wrist but not my vein and when I woke up my hand was about 3 times bigger than it should of been and very squishy. Not characteristics you generally look for in a hand, this was one of the more exciting moments of my 6 months in G1!!
Non existent white blood cells
Chemotherapy absolutely destroys your body, otherwise it wouldn't be able to kill all the cancerous cells. When I was not having one of my sessions I would have to go to the Pathology lab in Plettenberg Bay (home) where they would look for various indicators to see how good my chances of not dying immediately were and to gauge how the chemo was affecting my body! When you are on chemo you become susceptible to all and any infections/diseases due to your heavily compromised immune system. Once my white cell count was about as close to zero as it can possibly be, I certainly felt that it was negative but I'm not sure if that is possible. This is a very nerve wracking episodes because it means that I could have died even if I had got the common cold! Once I did get sick because of my low white cells, which obviously lowered them even more, and I had to spend a few nights in the local hospital being pumped full of antibiotics 24 hours a day. It was very scary! I was told that I could even have got chicken pox even though I had it when I was younger, that is how non-existent your immune system is once chemotherapy gets its teeth in!
Best (Worst) Birthday Ever
About halfway through my chemo sessions it had been decided that enough of the cancer had been reduced and Dr Hosking could now remove the infected tissue and I would be cancer 'free'. This operation is not as simple as it sounds and complete hats of to Dr Hosking for pulling it off! As I remember it was one the first of its kind in the world and was probably pretty tricky and was definitely an lengthy operation, over six hours. That was a lot for a little guy like me! The operation involved cutting out the tumor from my tibia and scraping away quite a bit of bone around the area so to make sure that all the cancer was removed. Then my fibula was removed from my left leg, chopped up into a few pieces and stuck onto the large hole where my shin used to be with some very expensive bone growing gel. A plate was then screwed into the side of my tibia in order to keep everything in place and it extended into my knee as well.The plate used to stick out past the skin and bone and was really quite a sight. I woke up from the operation on my birthday. I cant remember if the op was on my birthday or a day before and I only woke up the next day! Either way it was not the best way for a 12 year old to spend his birthday, but I remember a lot of my family being there for me and trying to make me feel a little less like death. I was still on chemo and had just undergone a fairly large surgery so I wasn't on top of the world at the time! Add onto that that in the coming days one of the ICU nurses removed my epidural too early and I was subjected to an influx of pain way too early in my recover!. It was here that I learnt the wonders of Morphine, my drug of choice/only one I was allowed. I wasn't allowed to drink or eat either, which wasn't ideal. My very nice Physio Belinda came around often with a bottle of water to make sure my lungs were still working. I was supposed to blow through a straw and make bubbles to show that my lungs hadn't gone bust during my op but because I was SO thirsty I used to suck up water through the pipe to stop myself from dying of thirst!. Obviously the fact that it was of medical importance for me not to drink was irrelevant, I was thirsty! After a few days of morphine and ice I was booted out of the ICU into a private room, I qualified for a private room because I was going to spend A LONG time in the hospital, 6 weeks to be precise.
The Lazy Boy
My room was quite big with its own bathroom, this was not important though because I could not get out of bed, At All. Both my legs had been elegantly chopped up by Keith and even having them below my heart resulted in extreme pain, which I was quite happy to avoid. My dad slept next to my bed in one of those big reclining lazy boys with big cushions, he slept there every night so that I wouldn't have to be alone! I spent a lot of time in the ward and had many visitors bring food and all sorts of goodies! After a few weeks I was told by Keith that I could only leave once I could walk around the courtyard outside my room. In my first attempt I dont even think that my crutches touched the floor, I had barely swung my legs over the bed and was already overcome by the pain. After being horizontal for so long my legs didn't take kindly to wanting to be used again. It took a lot of practice attempts to make it round the courtyard, starting small with a few steps and resting on a garden chair in between, to eventually making it around the whole way, I was free! I had won the battle but not yet the war as I still had a few sessions of chemotherapy to finish in order to make sure that they Zap all the cancer cells out of my body, great...Chemotherapy and an inability to walk at all were not a good combination for a now 12 year old boy! I spent a lot of time practicing 'wheelies' on my wheelchair and I must say, I was probably the best in the world. Once when I was practicing in the garden I tipped the wheelchair over backwards, with both my legs in casts I was in a tight spot but was eventually saved by one of my parents
Eventually my chemo sessions were up, the 100's of needles had done their job and I was declared provisionally cancer free. All I had to do was have X-rays and blood tests in decreasing frequencies over the next 7 years and then I would be given the all clear. These weren't fun, I'm fairly sure that I know all the pathologists and radiologists in Plett, Grahamstown and Cape Town as a result! They certainly know me, a session of X-rays used to consist of multiple angles of my lungs and legs, lungs because that is where the cancer is most likely to appear if it decided to come for round 2! Legs because there was still a lot of metal screwed into my bone! Almost 18 months after my main operation I went to get my pin removed from my leg, a very exciting moment! All went well and i was up and about on crutches without a pin, I was told to keep it protected and wear a shin guard. Unfortunately I was having a bit of a rough and tumble on the couch with my sisters when Vix (my older sister) thrashed out and accidentally kicked me in the shin, braking the bone instantly, not in half but enough to warrant a full cast and a lot more time on crutches. I went to knysna private hospital and after the X-ray I was given a nurse who promptly lifted my leg up to examine it and dropped it, which warranted another X-ray and an irate mother! With time my bone healed back and I was heading on the path to almost being a normal one and a half legged kid. My athletic abilities were limited and it was always very hard to be on the sidelines and not able to participate in sport, especially because I used to be such a sporty guy before all this! Once my legs were healed I had a lot of problems with moving any faster than a walk and Belinda my physio helped me alot with this to the extent that I can now run pain free! Unfortunately it was not to be plain sailing and my right leg started to grow sideways at an oudwards angle from the knee. This could of had long lasting effects and Keith decided that it would be best to cut my tibia and fibula in half, straighten them, stick a large pole down the middle of the tibia and sew me up again. That is obviously quite a crude explanation and the science of it is much more exact and quite boring, Dr Hosking cut both my tibia and fibula in half and re aligned them to the same alignment as my left leg, he also had to shorten the bone as it had grown longer to comnpensate for the angle. I don't know how I took so long to notice the skewness because when I look back at photos I can immediately see that my leg is growing in the wrong direction! Dr Hosking then put a long titanium pole down the middle of my tibia, a device which he and a partner manufacture themselves here in Cape Town! Thanks to this operation I spent 9 months of my matric year on crutches and my matric dance was more of a matric sit. I am eternally grateful for all the support that I received over the years from both friends and family alike, from my mom who sat by my bed for almost every single day of chemo therapy, for my dad who slept next to my bed in a chair for weeks on end, for my sisters for pretty much acting like nothing had changed and treating me like any normal brother should be treated!, for my Cousins, Aunts, Uncles and Grandparents for being so accomodating and always there for me when I needed them, for my friends who while still young were able to understand and show their support and for all the random people who my family told about my situation and Pulled for me the whole way. Without you all, life would have been a much colder place, Thanks a million :) Obviously I am also grateful for all the kind nurses and Doctors who put me on the straight and narrow to Good Health!
Family and Friends
As with any experience like this family are key, even while I may not have though about it at the time, largely because of my age, I understand now how important they were at a time like this. Friends are equally as important. When I was diagnosed it was something that the relatively small community of Plett had never dealt with before and I know that many people prayed for me/had me in their thoughts throughout my whole ordeal. My entire grade 7 class each wrote a card/note saying a little something which is very touching, I still have them all today in a bag above my desk at home. Last holiday I sat and read all the notes and it reminded me just how much everyone cared and was pulling for me! My family did a similar thing, a lot of my family members all sewed/wrote their name and a message onto a piece of material which my Gran then quilted together into a giant quilt. It has lots of messages from all kinds of relatives and also some from a lot of my Grannies "Quilt-buddies" around the world. Lots of "Quilt-buddies" also sent me nice cards and postcards throughout the year. I am eternally thankful lucky to be surrounded by such amazing people! Especially when I was down and out and lying in a bed!!!
I was lucky enough to go to St Andrews College in Grahamstown from grade 8 to Matric. I was even intending to go to St Andrews Prep for Grade 7 but when all of this happened those plans fell through! I remember going for an interview with then Headmaster, Mr David Wylde, A very nice, intelligent, and at that point, scary man! He was very acommodating and in talking to this 12 year old cancer kid his only worry was that if I would be able to bath/clean myself when I got to St Andrews! He also joked that I would be the envy of a few because I didn't have any hair, and there were some rules about that at SAC! This attitude of friendliness and accommodation never waned throughout my time at St Andrews and with all my medical encounters and difficulties I was always looked after incredibly well. I spent quite a lot of time at the school san because of all the tests and complications that followed my treatment, I even did computer maintenance for them because I spent so much time there! A great thing about my limitations was that St Andrews provided so many alternatives that I could fill my time with, I was allowed to play tennis as a sport the whole year round and I think after that many years Mr Eksteen was tired of me! I took the opportunity to join wind orchestras and the Jazz band (I played the Saxophone), I qualified in first aid, did presidents award and got my advanced Scuba divers course. It was always very hard not being able to do sport but it was all made bearable with the plethora of other activities made available and possible by the school. In grade 8 I had a full leg cast from ankle to hip and the standard beds in the grade 8 dorm were bunks which I couldn't get into! Housemaster at the time Mr Paterson arranged for me to have my own room out of the empty tuck shop by the front door and I was even allowed to use the Senior bathrooms because they had baths in them! I'd like to thank St Andrews for all the help I was given at my time their, especially Mr Paterson, Mr Wylde, Mr Hobson, Mr Edey and Mr Barnard, my Headmasters and Housemasters during my time there. It was a time that I will never forget!
When it got to this point I was fairly sure that any sort of exercise that involved running was out of the question, luckily for me the Tour de France was on during my matric preliminary examinations so naturally I had a lot of time on my hands and managed to watch the entire race, every stage - every day. I quickly became passionate about the sport and was determined to ride a bike once i was finished with my crutches. My dad was training for a mountain bike race at the time and I was able to go for little spins on the stationary trainer in the gym to keep my motivation going. I must add that my right calf was about 1/3rd the size of my left and probably as big as my bicep, which is small anyway. Needless to say I wasn't going to be pushing big watts anytime soon! Once I was off my crutches and at home for the long holiday I was determined to train and rode as much as I could on my dads mountain bike, reality hit on my first ride when I got left behind by my Aunt on the first hill and she never looked back! I was determined to push on and leave her behind on every hill once I was done!
When someone looks at my leg I can imagine why they are amazed that it can even move, let alone pedal a bike! I get lots of odd looks and the occasional random stranger asks me what happened, usually I open with a well crafted lie about a shark or a tiger but always come round to the truth in the end, unfortunately most people are never ready for the 'I had cancer' comment and that usually kills the conversation dead in its tracks, cancer; especially for those who have never been 'touched' by the disease is a subject that most people are uncomfortable with and would rather avoid. When I tell people so casually about it I think they are taken a back. I have had years to understand what has happened to me and is happening to millions of people around the world, I wouldn't say that I am desensitized to it, but I am comfortable discussing it and am more than happy to share with anyone who asks. It is easy to see why I would like to give back to the hospital that saved my life and why not do it through something that I have come to enjoy and am actually not too bad at! 7 years ago no-one would ever have said that I would be able to complete a mountain bike race, let alone the hardest mountain bike race in the world, the Absa Cape-Epic. Not to speak to soon but i believe that with a little more training from me and my partner Dad that we will be able to complete the race and complete it well, all while raising money for the Red Cross Children's Hospital.