I've put November, December and up to mid January's journal in chronological order for ease of reading NOVEMBER Saturday 1 The oncologist tells us his bone marrow biopsy will be done on Monday – and not Tuesday as we have thought all along. My stomach grips in a new knot of anxiousness and I struggle to maintain my composure, as I don’t think Damian heard – I’ll have to tell him, but first let him enjoy the little bit of a respite frompain he has now. Sunday 2 November I arrive to find Charmian and Damian packed and ready to go. He is allowed to go out for the afternoon and must be back tomorrow morning for the biopsy. We go to the farm so he can take it easy in familiar surroundings arriving just in time for lunch. And boy does he pack it away – chicken, green salad, pineapple, ice cream, more salad. Charmian makes some vetkoek a little while later and he demolishes this as well. Around 8:00 he tells me he’s ready for supper – a huge cheese russian and more salad. As he puts it, “at least it’s half healthy.” I struggle to get him to bed. He doesn’t want to go sleep because it means when he wakes it will be so much closer to going back to hospital. I hold him as tightly as I can for a while and e falls asleep in my arms. Monday 3 What a mission to get him to hospital. He drags his feet at every turn and its’s all I can do to get him in the car. We arrive at around 9:30 – only an hour and a half later than we should have. Luckily the doctors understand, but it’s almost immediate that he has to go in for his procedure. I watch them perform the biopsy and my stomach turns as the doctor forces the “corkscrew” into Damian’s hip bone and it slips right through. I pray that it hasn’t damage anything internal. Then the senior doctor takes over and draws a sliver of bone from the other hip – wonderful 2 sore hips to contend with. Damian is really funny when he’s under the anaesthetic – everyone’s a monster and he want to “klap” everyone who hurts him. This time he wants everyone to ask him any multiple of 11 – 11 times 11 takes a while but eventually he gets it right and is very proud of himself. He falls asleep secure in the knowledge that he is the most intelligent person on earth. When he wakes he is very tender on both sides of his pelvis, but he refuses pain medicine and the morphine drip. Now we wait for tomorrow – if his infection rate is over 30%, the oncologist has said it will be senseless administering any further treatment. I see a fitful night ahead. Tuesday 4 At a little after 8, the oncologist arrives to give us the most wonderful news we’ve had in a very long time. The infection rate is down to 14%. I don’t know whether to cry or laugh, but I give Damian a big hug and let everyone know – the SMS replies come in thick and fast. I notice the sun shining quite brightly through the hospital window. Damian is again allowed to leave the hospital until they are ready for his next batch of chemo. I decide a quick trip to Ladybrand will be the best possible therapy for him and we shoot off home for the afternoon. He arrives home for the first time in 3 months and is greeted by his very talkative cat, Mike. We sit around or a little while and then he takes a walk in the back yard after which we get a quick bite to eat en he and Charmian set off back to Bloem. He sleeps all the way back, sore, but as content as it is possible to be under the circumstances. Friday 7 The Murray and Roberts Golf Day was a huge success, with more than R150,000 collected. Our thanks and appreciation go to everyone who made it possible, as well as all the players. Saturday 8 It’s been wonderful being able to spend so much time with Damian out of the hospital environment. He has been relaxed, chirpy – even nice to his brother. His aches and pains have subsided and he can walk without too much discomfort, so we take him and Brandon to the movies where they watch Beverly Hills Chihuahau. Not mine or Charmian’s cup of tea and we have a cup of coffee while we wait for the show to end. We all watch the game between Wales and SA at the Spur, and while not the best of performances, Damian is quite happy about the Bok win. Sunday 9 His chemo starts tomorrow and it’s starting to show – he’s irritable, moody and depressed. He’s had no high temperatures or problems since he’s come out of the hospital, so we decide to smuggle him to Ladybrand for a few hours again. He calms down a bit and we end up playing Monopoly for longer than expected – he wins, of course, and as we head off back to Bloem, he falls asleep even before we get to the highway. When we arrive on the farm he is agitated and refuses to go sleep. I eventually get him to bed at around 1am, but it is not a restful night. I almost have to drag Damian out of bed and eventually get him to the hospital where they have decide to place him in ICU for 24 hours while they administer a new drug that has several known side-effects. He’s a little scared, but I stay with him until 10pm and head out to the farm – he has his own dedicated nurse and there’s not really much more I can do. Tuesday 11 The phone wakes me at 5am – I don’t know whether to panic, but seeing it’s Damian on the line, realise he must be okay to be able to call. His temperature has rocketed to 39.1 degrees, but the doctors have already given him Panado and the nurse is sponging off his body. When I arrive, he is sleeping again and his temperature is down to an acceptable 37.3. He gets sent back to his old room at around 11am where they hook him up to 2 machines for some more chemo. Today will be okay, it’s mainly decadron he’s receiving. The bad stuff starts tomorrow and he’ll start feeling it tomorrow night. The weather is absolutely terrible and I tell Charmian not to drive through tonight. I’ll stay with him and we can swap again tomorrow morning. Wednesday 12 I leave him at around 7am – sleepy, but still in good spirits. Knowing the suffering that’s coming, I hold him especially tightly for a little while before I have to leave. I call that evening to hear how he’s doing and speak with Charmian. I can hear Damian in the background – the nausea has started. I tell Charmian to give him a kiss from me. What a night – problems with both printers meant I couldn’t print the newspaper and had to ask my competition to help – which he did without any fuss. But it meant our paper came out a day late – hopefully everyone understands. The chemo has Damian in constant agony. He has nothing in his stomach to throw up, but his body is continuously wracked by spasms of nausea. He has four drips running into him again and is absolutely flat. He can hardly stand up to use the toilet. Friday 14 We had a surprisingly (relatively) peaceful night. Seems the anti-nausea drug they gave him this time has helped a little, because, while I know he is feeling absolutely terrible, it is definitely not as bad as last time when he was throwing up every 30 – 45 minutes, day and night. Now it’s only about every hour. The chemo finishes this morning, so by tomorrow he should start feeling better. It’s no consolation now, because he feels just plain lousy, but it is something to look forward to. Sunday 16 A rather uneventful weekend – Damian started feeling better towards Sunday evening – he was full of conversation. It’s so nice to see him in better spirits They’ve sent him to ICU again to monitor him while he gets the Mabthera. This really knocks him out, because he spends the whole day sleeping. I eventually shake him awake at 6:30pm to watch 7deLaan and it is an effort, but I persist and we watch TV together until around 10, when he decides he needs to sleep again. This time the doctors have prescribed Panado to be administered through the night and ensure he doesn’t get a fever like last week. It works, because he has no fevers and only wakes up at 7am when the shift changes and the nurses make all kinds of noise – including their ritual song and praise. Tuesday 18 They let him out of ICU at around 11 and he aks for a Russian for lunch. It’s the first time he’s wanted anything to eat in almost a week, so I waste no time. He takes about a half hour to eat it, but at least it’s in – and more importantly, stays in. Wednesday 19 His spirits are a little better. My mom and sisters are coming to visit on Friday and he’s really looking forward to seeing them again. We just hope his blood counts are high enough so he’ll be allowed out. Damian has decided he’s had enough of the less experienced doctors hurting him and in future he will inject himself with the Nuprigen (to increase his white blood cell count) Thursday 20 Disappointment. They’ve taken blood this morning and his counts are very low – he’ll have to get platelets. Damian is very unhappy, because it means he won’t be able to go out for the weekend. He injects himself again, puncturing himself 4 times in the process, but still quite proud of himself. It’s sore, but it’s different when you know you’re controlling the pain giving. The lower back pain has started up again – we’ll have to monitor it and look at ways of breaking the pain cycle if it gets out of control. My mom and sisters arrive with Wayne (my brother in law) and while I’m sure Damian is jumping up and d own inside his mind, he’s just too sore to even try seem happy. My mom and sisters spend the afternoon with us – they’re all wearing their Damian the Tiger T-shirts and cause quite a fuss in the ward as well. Saturday 22 His oncologist is hesitant bout letting him out today, but when he says it’s his mom’s birthday, she cannot resist the puppy dog eyes and he is allowed out – until after the rugby. We spend the day in the mall and at the hotel, where we watch the rugby. Unfortunately the pain is just too much and Damian cannot sit any longer and watch the game finished. Sunday 23 Damian is allowed out again and so is able to say goodbye to my sisters and Wayne at the hotel. (My mom will only be going back on Wednesday.
Monday 24 His counts are even lower and he now has to get platelets, as well as 3 units of blood. On top of this, he needs to get Mabthera again, which means another 24 hours in ICU. His temperature is around the 39º mark and his body is shaking with uncontrollable spasms. My mom witnesses this first hand and is visibly upset – she hates seeing him like this. To make matters worse, a baby in ICU passes away while she is there – not a very pleasant experience. Tuesday 25 He comes out of ICU – the temperatures are down, but the pain is worse. I ask the doctor to have the morphine drip reconnected. Damian does not even try argue. Wednesday 26 He’s becoming quite an expert at injecting himself – no fuss, fewer holes and a lot less screaming. The morphine drip helps a little for the back pain, but in the small doses it’s been set to give, it does not last long. NOVEMBER Thursday 27 Damian can’t sit, can’t lie, can’t stand – the pain is unbearable. The doctors come see him and say that it’s caused by one of the drugs. They can’t give lower doses and they can’t give preventative medicines – he’s just got to bear it. Small consolation when your son screams in agony every time he needs to use the bathroom. Friday 28 I have to go to Ladybrand today and can’t get anyone to look after him. But he says he’ll be okay if we just put him in the lazy boy and make sure he’s got enough drinks and snacks. His back pain is a little better, but not enough to be able to move around. He’s started to read again. It’s encouraging, because I’m sure it’s a bit more stimulating than games and TV all day. I only get away at 11, do a few things at home and we’re back at him at 6pm. He’s just about finished the book – some Artemis Fowl adventure. Saturday 29 The doctor says he can come out for a bit today. I realise again how sore he is when he says he’d rather stay in the hospital. He’d have to have a drip connected into his wrist again, we’d have to push him around in a wheelchair and we need to be back by 4pm so he can get his antibiotics – I think it’s all too much and he’d rather avoid unnecessary pain. Sunday 30 Again he’s given permission to go out and again he prefers to stay in. Now, considering the new Leon Schuster movie is showing, that must be a hell of a lot of pain he’s avoiding. As usual on the night before a bone marrow biopsy, Damian refuses to go sleep. Eventuall at 2am, I climb into bed next to him and hold him until he falls asleep. DECEMBER Monday 1 They do another bone marrow biopsy. This time it’s only the senior oncologist and as she extracts the sliver of bone, the needle breaks off in his hip. It takes her about 5 minutes to get the bone fragment out. It’s painful and Damian screams as the needle probes inside his hip bone, but thanks to the anaesthetic, he won’t remember. He even gives her a hug after the biopsy, calling her a “nice monster doctor.” I’ve recorded this biopsy and will put it up on You Tube this weekend – just bear in mind, it’s not for the faint-hearted. Damian’s back is much better today – he can walk a little and we go out into the lobby and look at the city lights. He’s more himself now and we talk about all sorts of things – it’s so nice to have my son back. Tuesday 2 My stomach is twisting in knots of dreaded anticipation. By 10am, the doctor hasn’t yet come to tell me what the results of the biopsy are. If it was good news, I know she would have been at me early. Eventually I can’t take it any more and I go looking for her. My head starts to spin as the doctor tells me there is no change, in fact, it’s about 2% worse – I was hoping for at least a 5% improvement. But, she is quick to add that the 2 additional drugs he received the last month may have had an influence on the readings. They will send a sample to Cape Town for further analysis and we should know next week what the next course of action will be.
Wonderful news – one of the donors in Germany is a match. They have to do one last test to confirm his suitability, but in terms of tissue typing it’s a perfect match. This test costs R20,700 – thank goodness we’ve raised enough to cover so many of the costs so far, but now we’re going to have put some serious campaigning in – we need to raise over a million Rand on the next 3 months. Thursday 4 They draw blood again – if his levels are okay, they will let him out for the weekend. The pain is a little better and Damian can move around a bit more. At around 11am the doctor comes in with a stern look on her face and our hopes sink, but she quickly smiles and say that Damian can come out until Monday, but we need to keep a very close eye on him and at the first sign of nausea or fever he needs to come back. Friday 5 to Sunday 7 What an amazing weekend. To have Damian out of hospital and mobile is beyond words. We spend most of the time just relaxing and talking, but it’s quality time. We braai, watch a movie (Mr Bones 2), play putt-putt and generally do the sort of things most normal families do and which we had so often taken for granted. Monday 8 They do the bone marrow biopsy – it’s not so bad this time, because they only draw blood and cells, not actual bone. I’m not quite sure how Cape Town figures in this test, I think the results are sent to the oncology unit there for analysis. Damian sleeps for most of the day – even though it was a simpler procedure, his hip is quite badly bruised and very tender. Tuesday 9 The head of the paediatric oncology unit sees us this morning, but before
I can start worrying, he quickly gets to the point. The infection is down
to 10%, but Damian’s resistance is too low to carry on with the
chemo this week. He needs to rest some more and be back on Monday when
they will start with the 3rd session in this course of treatment. Wed 10 He’s still quite weak, but the happiness at being out of his “prison” buoys him. He spends the day playing games with Brandon and giving Mike, his cat, attention.
His hair has started growing back – fine, dark, fluffy hair. He was blonde before the first diagnosis in 2001, then his hair came out light brown – now it looks like it might be black. Friday 12 We go back to the hospital so they can clean out the line into his chest. It’s such a pleasure to just go in and out – how I long for those days again, when he received his monthly check-ups and it was only a couple of hours of hospital each time. Sunday 14 It’s the Round Table Christmas party and Damian insists he is alright to go. We get to the dam where it’s being held at around 1:30pm and Damian ahs the most fun he’s had in a very long time. He rides the quad and even gets to steer a ski-boat – he beams from ear to ear when he gets off. Monday 15 Chemo starts again today – it’s the last session of the Mabthera. Thank goodness, because at R18,000 a pop it’s put quite a dent into the trust fund. He starts feeling nauseous towards late afternoon but it’s not as bad as previous times - they let him out of ICU at 9am. Tuesday 16 The Decadron starts today – this is the drug that causes the pain in his lower back. The doctor’s put other chemical in his rehydration drip that they think will help negate the effect of the Decadron – we can only hope. Wednesday 17 They wake Damian at 8am with the bad news that he has to get a drip in his arm as well. Despite his protests and crying, it gets done and the third drip is now in place – at 12’o’ clock, another two will be set up December 22 We’re still not sure if Damian will be able to come out on Christmas Day – his white blood cell count is very low, which means he will be highly susceptible to infection. His sprits are very low as he realises that this stupid disease is probably going to cost him another important day in his young life. December 25 Merry Christmas and it’s wonderful news as the doctor says Damian can go out for the day – as long as he takes it easy and isn’t back too late. We go out to the farm and open presents – Damian gets the Playstation game he’s been wanting for 3 months, as well as mini-speakers and a new cellphone. We get back to the hospital around 9pm – he’s exhausted but content. December 26 They let him out again and we take Brandon to the airport – he’s off to visit his grandparents in Cape Town for 10 days. Damian is a little upset that he isn’t able to go, but after we take him to the movies and treat him to a fishy lunch, he cheers up a bit. December 27 He’s picked up an infection. His temperature rockets up to 40.6 degrees and his blood pressure drops to 60/40. When his pulse rate falls to 45, they decide to admit him to ICU where he spends the next 2 days. JANUARY Thursday 1 Happy New Year … for some. For Damian it’s another day of being hospital bound with a drip attached to his chest through which he receives anti-biotics 4 times day on top of tablets 3-5 times a day and suffers the pricking of little and not so little needles on a constant basis. We’ve been in this ward for 5 months now and quite rankly, we’re more than just a little fed-up. Oh well, another 2-3 months and we should be out of here. January 2 Damian won’t eat – it’s getting rather worrying and one of the nurses says they may have to consider putting a tube into his nose – I don’t know if she’s just trying to scare him, but even that doesn’t work. January 5 Hoooray – his appetite is back. He has 2 Weet Bix for breakfast and 4 for lunch and 2 packets of 2 minute noodles for supper. Hey, it’s not gourmet eating, but I’m just happy that he’s getting something in. While he’s in the bath, we notice that blood is running back into his line. After struggling to get the blood to run back, the nurses give up and perform an emergency flush – it helps, but during the night the line blocks again and they have to force it open by squirting solution into it. We’re going to have to keep a careful eye on this situation, we cannot afford to have this line close on us. Wed 7 He receives platelets again. But this time, the doctor says when they are done, he can leave the hospital until Monday. It’s so nice just to see the pleasure in is face as he ponders leaving the hospital room, even if only for a few days. We go collect his brother from the airport and I take them out to the farm I decide to return to Ladybrand, as I have a serious backlog and leave strict instructions with his grandparents to take his temperature every 4hours and let me know the moment it goes over 37°. Thursday 8
Damian has to go in for blood tests tomorrow, so I chase them to bed – we need to be at the hospital before 8am. Friday 9 Brandon’s birthday – he’s 11 today. People often ask me how he’s handling this situation and all I can say is that since he can remember, Damian has been fighting Cancer. He was only 4 when his brother was diagnosed the first time, so, for him, I think it’s just part of life. They watch a movie and I take them for a fishy lunch. Damian struggles to walk and everything is done at ¼ pace. It’s the same cycle each month – just as his legs start recovering, the chemo starts again and he’s bedridden for more than 2 weeks, during which, at the worst of it, he can hardly even walk to the bathroom 2 metres away. We take the weekend easy, spend a bit of time together as a family, watch a few DVD’s, enjoy a fondue – Charmian beams as Damian devours morsel after morsel of assorted meats. It’s great to see him eating so healthily.
We should get news on the donor this week – he’s a perfect DNA match, but we’re just waiting to find out if he is a healthy specimen of a human being. He has to be in tip top medical shape, or they won’t use his stem cells. Damian is back in hospital for blood tests. And I don’t know whether to be happy or worried when his blood indicates he’s not ready for more chemo. Of course, Damian is ecstatic that he can enjoy another week of freedom; although, I suppose it’s more like he’s happy he can enjoy the freedom, feeling a bit better than he has for so long. He must be back in hospital on Thursday for more blood tests, but we now have to wait another week before we will know if the Cancer count has come down. Another week of anxious worry. I can handle the suffering with Damian as he receives chemo: the nausea, the pain, the lack of sleep, but, for me, the eternity of waiting each month to find out if it’s actually been worth it, is the most difficult part of the process. To see what has happened more recently - click here
To see what has happened since the begining of this journal, in reverse chronological order, carry on reading ...
OCTOBER Friday 31 Good news – Damian’s blood counts are starting to improve Thursday 30 Damian has figured out it takes between 5 – 10 minutes for the morphine to kick in, so as soon as he feels the beginnings of a need to go, he pushes that button and it helps him cope with the pain of standing and moving. It’s still painful, but at least it’s bearable. Wednesday 29 It’s in his own control, whenever the pain gets unbearable, he
must just push the button and it will send a tiny dose of morphine through
his veins. Tuesday 28 At last, he slept through the night but wakes up in pain again. He gets more painkillers which leave him drowsy and although they don’t help for the pain specifically, at least he can sleep. Yolande from Reach for a Dream pays us a visit – she has a special surprise for Damian and he smiles for the first time in what seems like ages when he opens the box and finds a Laptop inside. He says now he’ll be able to write the book he started on in July. he physiotherapist wasn’t here yesterday or today and we find out she has chicken pox – wonderful, now Damian has to get another injection to immunise his body against the virus. He was immunised as a baby, but the chemo counters that and we can’t afford to take any chances. As I leave for Ladybrand, he is watching 7de Laan in a state of semi-sleep.
It’s okay when he lies still, but he can’t bear to move. He
hardly reacts as I kiss him good-bye and as I leave the hospital I’m
already missing him. Monday 27 “Why, why, why … Why does it have to hurt so much” Damian sobs as the pain wracks his little body. I complain again to the doctors and they arrange for x-rays, as well as specialists to examine him. The x-rays show nothing, but the specialists think the chemo has caused damage to the tissue between the bone and muscle of his lower vertebrae. They prescribe another drug that he will get at night before he goes
to sleep. It’s supposed to break the pain cycle and allow his body
to heal. Sunday 26 He and his brother watched DVD’s while Charmian and I go for a cup of coffee. We’re really living past each other at the moment and these are the only times we have together to talk and consider our future. Saturday 25 They’ve prescribed 3 different types of painkiller for his back and nothing works. Now he doesn’t want to eat because it means he’ll have to
go to the toilet and that is more painful than anything I’ve ever
seen him suffer. Can’t it just stop? Friday 24 The pain in his back is unbearable, but they can’t find any physical problem. Even a sonar revealed nothing. I wonder if he hasn’t torn a muscle. He gets physio again and again it only helps for a short while. Charmian and Brandon arrive around 6pm – he’s happy to see
them, but it’s difficult to smile when you’re in constant
agony. Thursday 23 It’s almost a week since they stopped the chemo and he’s still feeling nauseous. Not as bad anymore, but enough that he’s having difficulty keeping food down. He’s developed some kind of muscle pain in his lower back and it’s causing hell. As if he hasn’t suffered enough already, now he can hardly stand, he can’t walk at all and it’s almost impossible to fins a comfortable position in which to lie. The doctors sent a physiotherapist and it helped for about a half hour before the pain started up again. His white blood cells are very low and he’s getting injections
on a daily basis to help them increase. More needles. Tuesday 21 Our most peaceful night in a while. He still wakes up a few times more with discomfort than pain, but at least the nausea is just about gone – as he puts it, he’s at 80%. This morning starts seeing him look his old self, with a few witty comments and thoughts about the future. Now we have to wait 2- 3 weeks for the next bone marrow biopsy – it’s going to be an incredibly tense few weeks. Monday 20 He asks for Rice Krispies for breakfast and manages to eat quite a bit. This stays down for 2 hours, and then he starts on another yoghurt, finishing the tub and true to form, 2 hours later, this is also despatched. He decides not to try anything more until supper time - believe it or not, he orders a MacDonalds Foldover and actually eats half of it. But more importantly, it stays down. He still feels a little nauseous, but manages not to throw up again Sunday 19 I slept on the farm and Charmian die the hospital duty – she says it wasn’t too bad; Damian only woke a few times. We spend the day in the hospital room with him, going out only for a quick trip to the mall to get a few essentials for the week ahead. Damian sleeps while we’re gone, but ever with his dish near him As Charmian prepares to leave to return to Ladybrand, Damian ask for
yoghurt. I almost fall over my feet to rush to get it for him, and while
he only eats a few teaspoons, which also don’t stay down for too
long, it’s a start. Another sleepless night. Apart from the nausea, his body is sore and he hasn’t eaten a thing for 2 days. Thank goodness the intervals between episodes start decreasing and while he still can’t eat, he sips on a fruit juice and appletiser. Charmian and Brandon arrive around 11’o’clock. It lifts his
spirits a little, but the retching continues. We’re both dead tired and still the nausea continues. Now he does have nothing left in his stomach, but bile. The acid has started burning his throat and oesophagus. The doctors give medicine for that, but it’s difficult for him to get it down. I have to force him to drink it – he must. We don’t want complications from ulcers or blisters. Of course, he has hardly drunk some than it comes back up, but at least it will help by lining the throat on the way down. At least the chemo stops at 12pm - the effects will not stop so soon,
but it’s something to hope for. He woke a few times last night and pretty much threw up everything he’d eaten for the past couple of days. At least he still has an appetite and he orders a bowl of muesli for breakfast which I make with pleasure. However, this doesn’t stay down for too long and the waves of nausea start hitting him more frequently. Eventually he has nothing left to throw up – but still his little body rocks with spasms as it tries to rid itself of the intrusive chemicals. I start to worry when I see an array of colours and what seems like pieces of clotted blood in his dish, but this soon stops to be replaced by brown fluids, then green then yellow. The night is long and difficult – Damian throws up every 30 to
45 minutes. All I can do is rub his back gently and wipe his mouth. They’ve
given him something for the nausea – if it’s working, I’d
hate to know what would have happened if he hadn’t received it. The nausea has started and he doesn’t feel well. I finish the newspaper and have to sort out a few other odds and ends, so only get away from Ladybrand around 7pm. He calls as I’m leaving and is obviously in a great deal of discomfort asking tearily why I’m taking so long. I walk in to Damian’s room to be greeted by the sight of him hunched over a big stainless steel dish – little realising that would be his constant companion for the next few days. He has 4 drips running into him at the same time. Tuesday 14 They’ve started a new protocol - a couple of chemicals they haven’t
tried before - it just has to work. They started his chemo today. He’s in such good spirits and his
blood levels are surprisingly good – let’s hope it’s
a sign that he will be able to handle this chemo well. Sunday 12 What an absolutely amazing weekend. Movies on Friday, Big Screen rugby on Saturday. Given a Yorkshire Terrier. A day at the zoo today where he saw real live Tigers. He’s absolutely exhausted, but it’s the best he’s felt in a very long time. And no real aches or pains. Thursday 9 Unbelievable! On Tuesday the doctors said Damian cannot come out. Charmian
has just phoned to say she’s on her way to her parent’s farm
with Damian. One of the oncologists feels he’ll do better outside
than cooped up in his hospital room - Damian is overjoyed. Tuesday 7 The results of his biopsy came back today and it’s not good news.
Damian is not near to where he should be in terms of the cancer “penetration.”
In fact, everything is lower than it should be and they are adamant he
cannot come out until the next session of chemo starts on Monday. Monday 6 My baby is in so much pain and there’s nothing we can do. He had a case of gastro which caused infection and rawness that hurts like crazy every time he goes to the loo. He is in constant pain and we’ve tried just about every lotion and cream available, but nothing helps – it’s just raw and sore. After the gastro he became a little constipated and that just compounded the pain. This morning they did a bone marrow biopsy. Sounds harmless? Believe me it isn’t. They sedate him and then twist a corkscrew-like device into his hip and extract a sliver of bone about 4cm long and 0.5mm wide. With his poor luck, it was unsuccessful the first time and they had to redo it – so he had a double dose of the metal corkscrew being twisted into his frail little body. When he woke he was in absolute agony, the pain from the biopsy added to the pain of the infection had him in tears the whole day. Eventually I managed to get him to drink an enema to sort out the constipation on advice of the proctologist. About an hour after he drank the enema, it started working. Now imagine having gastro again when you’re already raw and sore. And imagine how much worse it is when you can hardly stand because of pain where a metal object was forced into your hip bone. And you’re connected to a drip which has been inserted into your vascular system through your chest. Now, imagine you’ve just turned 13 and you have to bear all this pain and you have no idea what you’ve done to deserve it. And finally, for the last few days you’ve hardly been able to sleep because of pain, and suddenly you need to go to the toilet every half hour. I know for a fact, I would not have been able to handle it. At one stage, around 3’o’clock in the morning, he was sitting on the toilet for the umpteenth time and it was obviously burning like hell, he screamed out in pain and I told him to stop it. Through the tears and pain he didn’t tell me how sore it was, or he couldn’t help it. He simply said: “I’m sorry, Daddy.” I wanted to hold him and comfort him and just take the pain away. But I can’t – I can’t do anything to make it go away. We bathed him again and after rubbing him with cream again, I lay next to him on the single bed and just held him until he fell asleep. And I told him he didn’t have to hold back – if it hurt he could cry or scream or do whatever he needed to do to help him deal with the pain.
Wednesday 1 It's been a while since I've written in Damian's journal - not because nothing has happened, but because it seems everything that happens has happened before. We’ve now been in the hospital for 2 months, and the days are beginning to merge into each other. Almost every day is like the previous one and the weeks are flying by like jet planes. Our day is pretty much as follows: 10am - Damian wakes and has breakfast Of course, this is a very broad schedule and of course, different things happen each day. But for the love of me, by the end of the day, I cannot tell you what happened that made it different. Where are we now? Damian’s own Bone marrow results finally arrived last week and they’ve decided to test his brother again, because these results are different from when they tested him 3 years ago. I don’t know how long this will take, but if every test is going to take 3 weeks, I think we’re going to have to make a plan quickly. The Trust has finally been registered and the bank account opened – the account details are – The Damian Kriedemann Bone Marrow Trust, FNB Bloemfontein, Branch code – 230134, A/c no – 62198244552 Fundraising is going a bit slowly, though we have a few functions in process – 7 November is a golf day in Cape Town. 13 November is a “manne aand” in Bloem and 5 December is a golf day in Jo’burg. I need to confirm if I can do a golf day in Ladybrand in November. The SMS competition is not attracting the kind of response I’d
hoped for and it looks like I’ll have to contact a radio station
directly, as the people I asked (who said they were connected) have not
come back to me. SEPTEMBER Wednesday 24 Charmian was with him last night. She tells me one of the nurses who was checking the patients has flu and was coughing over Damian while taking his readings. I don’t think she’ll be doing that ever again in her life …. They bring the platelets – actually he was supposed to get them yesterday already, but the bag ordered for him disappeared in transit – just another medical mystery? He seems to be in a better mood when I talk with him, maybe he was just missing his mother. Tuesday 23 I woke up sometime during the night to what sounded like anguished wailing. I fleetingly wondered if it came from next door, but hearing nothing more, think no further about it. When I get up, the room next door is empty. Fearing the worst I ask once of the nurses where the patient is and she tells me she did not make it. This seems to upset Damian quite a bit and he is very quiet for the rest of the day. Even when I call later, he is tearful and complains of not feeling well, although he can’t pinpoint why. They tested his blood again this morning and he has to get blood and platelets. Later on in the afternoon, the nurse who puts the drip into his arm hurts him quite badly – I want to say something, but don’t know what – he decides to sleep a little and I go back to Ladybrand. Monday 22 Damian sleeps until 11am – he was obviously worn out from the eventful weekend. He’s so used to lying on his bed all day that the physical exertion of the weekend must have taken its toll. He’s started developing sores in his mouth – another side-effect of the chemo and the doctor prescribes, you guessed it - pills. For Damian it’s a question of which is worse – the sores or the pills. He also gets an anti-viral mouthwash that tastes worse than anything else one earth – well according to Damian anyway. I have a meeting with Jaco de Wet who has offered to help us organise a banquet evening in Bloemfontein. We decide on Thursday 13 November – I will arrange the venue, he will organise the rest. At around 10:30pm, I discover the pills still next Daman’s bed.
And still he is reluctant to drink them. Is it time for tough love again? Sunday 21 Again Damian is permitted to leave the hospital, and we decide to spend the day resting on Charmian’s parent’s farm. He and his brother sing a bit more karaoke, which ends up in a fight (as usual) – you see, Brandon doesn’t read the words as quickly as Damian, but then he hums the tune, which the game recognises and scores – to Damian it’s cheating. To Brandon, it’s: “I don’t understand the problem?” And so after a few more hours of bickering, shouting and other expressions of brotherly love, it’s time to get him back to the hospital and for Charmian and Brandon to head back to Ladybrand. When we arrive back at the hospital, we see there are new tenants in
the room next to Damian’s – a little girl of around 3 years
has been admitted, with what I find out later to be a very aggressive
cancer of the kidney area, something she has had for a while – she
was out for a while, but has been readmitted with chronic symptoms. Saturday 20 After an uneventful night, we await the doctors to come give us their decision. Eventually they arrive and after a little teasing, confirm Damian can go out for the day, but must be back by 7pm. We must just keep the thermometer handy, and at the first sign of temperatures, must get him back to the hospital asap. We let him and Brandon watch a movie and then go watch the Cheetahs/ Bulls Game at friends (no comment). Damian has discovered karaoke – we especially got the Hits of the
80’s CD, because it’s our (mine and Charmian’s) era,
but when your son, who has never heard the songs before, and who does
not have the greatest voice either, manages to beat you, you should quickly
realise that you were not meant to be a Pop Star. After hearing myself
sing a few lines, I also realise how lucky South Africa was that I was
too old to compete in Idols. Friday 19 Seems Damian and Storm had a great time playing Playstation, although the details of what time they eventually went to sleep are a little hazy. We get back to the hospital the evening to some good news – if
he has no temperatures and is feeling okay, he’ll be allowed out
for a few hours on Saturday and possibly again on Sunday. Thursday 18 Damian has decided that his mother and father should spend the night together, at home – to remember what it feels like, he says. His hidden intention becomes apparent, however, when he asks if his cousin, Storm, can keep him company. I reluctantly agree, but only when Charmian reassures me that he has no temperatures. I also have quite a bit of work to get through and an extra day will help me immensely We call a few times through the day and into the evening to make sure
everything is okay – ready to shoot through at any sign of problems,
but we needn’t worry, Damian is in good hands. Wednesday 17 No drip, no temperatures – it almost seems to good to be true. Charmian spends the day with him - they spend it watching a bit of TV
and taking it easy. Tuesday 16 Now that there’s no drip, he needs to get his chemo in tablet form. Having being drinking tablets since he was 6, sometimes as many as 80 in a week, this is far from pleasurable. But anything is more tolerable than the drip, so he forces them down. His white blood cells are practically eradicated, which means he has
no immunity. We need to make sure his contact with the outside is limited.
They monitor him on a regular basis – the first sign of infection
would be a high temperature and this would mean being placed on a drip
immediately so that he could be given antibiotics intravenously again. Monday 15 The Hickman drip can come off today. Damian is so happy, because it means
he has more freedom of movement. He’s feeling a bit better today
– still a bit tender, but being in better spirits definitely helps
for the pain. Sunday 14 I’ve overslept a little. Charmian phones me awake at 10am. I must have really been exhausted. I get told to bring slap chips. Brandon and I get to the hospital around 11:30, and Damian decides it’s okay if I take Charmian for a cup of coffee. He and Brandon will play Playstation. For some reason his body is terribly sore today – he says it feels like he has bruises all over. Just another side effect of the chemo, I suppose. At least he’s not too nauseous, because on our way back, we get an order for more slap chips. Charmian and Brandon leave for Ladybrand at around 4pm. Damian says he feels funny – it’s like semi-sore, semi-nauseous. Just plain bad. We watch the 8pm movie together and then he decides to go sleep. I think it’s the earliest he’s gone to sleep since this thing has started, and he had a snooze this morning. As I sit typing this journal, I glance over at him occasionally –
he looks so peaceful and beautiful. It’s just so hard to believe
he is in mortal danger and even more difficult to understand why such
a precious young soul should be subjected to this suffering at all. Sat 13 Today they’re giving him yellow liquid. The drip has to run for 6 hours – not a minute longer. So guess what he’s doing from 10am to 4pm? Although, it’s not like he would have been able to go anywhere else anyway. Snotkop bought him FIFA ’08 – a Playstation game, but he’s got it already, so I’ve been instructed to exchange it for him. I must phone him from CNA and tell him what they’ve got. Charmian was going to go the mall with me, but he asks her to stay, so I take Brandon instead. I take out a few DVD’s which we all watch together and he and Brandon
play Playstation in between. Eventually Brandon and I head out to the
farm where I manage to fall asleep despite the snoring and howling of
wild animals. Another day of blue liquid and another day of nausea. It’s mostly retching and bile, but he does lose a bit of breakfast as well. It’s on days like these that I find myself admiring my son for his strength. He has to be the bravest, spiritually strongest boy I have ever known. He just lies there and takes it – the pain, the nausea, the frustration and never once has he felt sorry for himself. Yes, he admits life sucks and he’d rather even be at school, but I am pretty sure if it were me, I would have given up already. But he’s a fighter and there’s not even a thought of giving
up – he still talks of becoming a lawyer and playing rugby professionally.
Thursday 11 He received another visit from Wendy van Wyk, a friend from Ladybrand who is also receiving treatment for cancer. Her treatment involves radiation, as well as chemo, and there’s obviously a bond that they share as they fight against a common enemy. They’re putting a blue chemical through his body today – it’s part of the treatment the oncologist has prescribed. The moment it hits Damian’s system he becomes nauseous. All we can do is hold him (not too tightly though) and try give him strength on which to draw. It’s starting to get more and more difficult to cope with the limited time we have to do what we would normally do in a week. I get to Ladybrand Tuesday nights, and am there the whole of Wednesday and head back to Bloem on Thursday afternoon. Charmian is in Ladybrand Mondays, goes to Bloem Tuesday afternoons (late), heads back to Ladybrand Thursday mornings and goes back to Bloem Friday afternoon. So we’re together over the weekend, but otherwise just see each other in passing (sometimes). We can only hope that people understand – this is our son’s
life. There is no sacrifice we wouldn’t make to be with him and
support him through the treatment – however long it may take. Wed 10 Charmian bought Damian Appletizer and jelly babies. The Volksblad did another story on Damian, so my phone rang all day with
people wanting to know how they can help. I feel so frustrated at not
being able to go to them myself and draw their blood and test it there
and then. But there are rules and procedures for the testing and I’m
also actually not qualified to do these tests. Tuesday 9 September They arrive with the chemo at 8am. They already started him on the anti-nausea tablets last night - I hope they work, for his sake. His Oupa comes to visit at around 11am and brings his Playstation. That should keep him busy and keep his mind of a few other things. Then Reverend Deon from Trinity Methodist Church comes to visit for about an hour – he and Damian have lengthy discussions about games and rugby. I chip in every now and then, but soon realise Damian can hold his own in the various arguments they get into. Finally, Francois Henning, aka Snotkop, arrives together with Yolanda from the Sondag Newspaper, Johan from the record company and Lisa the photographer. Francois and Damian hit it off immediately – the bunch of gifts he brought may have had something to do with that. And they talk about all sorts of things – eventually Damian has him promising to arrange a visit with real tigers. Now we just need to convince the doctors (and Mom). The Sondag will publish the story this coming Sunday, together with details about the competition – the prizes are pretty awesome, but I can’t divulge any further info until it has been published – watch this space! Johan Drotskie, manager of next music, received a bone marrow transplant and, 5 years later is living testimony to the fact that the procedure is successful. He advised Damian that when he’s feeling nauseous, he should try apple juice and jelly babies. A bunch of students from the “Vergeet-my-nie” residence gave blood for testing today. I think it would be a great idea for them to meet Snotkop, in person, as a thank-you for the effort they made and Francois is immediately agreeable to the suggestion. So, off to the campus we go and meet around 30 of the girls who are at first quite timid, but after they have performed a rather loud song/cheer, they loosen up a little and soon all are getting on like old friends. I leave Snotkop and his entourage at the Cubana in Bloem and head back to the hospital to say good-bye to Damian. Per his instructions, I pop into the local Spar to get a few packs of 2-minute noodles and then it’s the trip back to Ladybrand. After all the time we’d spent together, especially out of the hospital,
over the past few days, arriving home and not having him there seems to
have caused a mild case of depression. It was great seeing Brandon and
Charmian again – but the family was apart – and it just seems
so wrong. He needs to get better so we can have our son back where he
belongs and Brandon can have his big brother again to play with and protect
him like he always has. Monday 8 September I wake Damian at 8 and then it’s the huge move – carting everything back to the hospital again. Eventually we arrive at around 10:30 and it’s blood tests and being hooked up to the I-Vac and then back into bed. The rest of the day is pretty uneventful – we surf the net abit and check e-mails and his Facebook profile - his Facebook group (Damian, the Tiger) has grown to 244 members, which is quite a lot, considering we’ve only really started letting people know about it about a week ago. Now if I could just work out how to send messages to each of the members …. He’s only being re-hydrated today, so there’s no chemo – that starts tomorrow. So tonight should be pretty quiet. We’re looking forward to meeting Snotkop tomorrow – seems
he has a whole bunch of ideas for raising funds Sunday 7 September We decide to take it easy. Damian sleeps late – but his little brother manages to sleep even later. Eventually we get them up and fed and then watch as they play Playstation with and against each other for most of the morning. Charmian’s mom has prepared us a lovely Sunday lunch and Damian helps himself to more than we thought he would. He has a little headache but says it’s not serious. His friend Nicholas is on his way to Bloem with his Mom and brother to collect his Dad at the airport and wants to see Damian while they’re here. We decide to meet at the Windmill Casino for a milkshake. Damian and Nicholas disappear for awhile as they share stories about what’s been happening over the past few weeks. Deon and Suzette Viljoen, frinds from Ladybrand, also happen to be in Bloem and they join us too. We’ve arranged that Charmian takes one of their cars back to Ladybrand, so once we’ve all had our shakes, we go our separate ways – and Charmian heads back to Ladybrand with Brandon. His chemo starts again tomorrow and he’s enjoyed being out of hospital
so much, he wants to stretch it out as much as possible. Eventually I
get him to go to bed at 11:30 – we should be back in the ward at
around 8:30, but I decide to let him sleep a little later. Saturday 6 September
The awaited day finally arrives – it’s been a while since
we’ve watched a game at the stadium and Damian has been really excited
to be going. When he wakes, he tells us he had a nightmare – in
it he was admitted to hospital just before the game. He looks so weak
and pale, that we almost wonder if it isn’t a real possibility. Friday 5 September Bloemfontein Multifranchise has given us tickets to watch the Cheetahs/Province game in Bloem tomorrow in their suite. Johan Botha organised it with them, and Henry Jansen of Kia Motors has arranged for Damian to receive a ball autographed by the Cheetahs team. We receive a call from Henry - the problem is they can only do the handover on Friday – Saturday is not an option. And the handover would be done by Damian’s favourite Springbok, as well – Juan Smith. I called Damian to ask if he would be able to get ready on time, as this needed to be done at 14:30. You can imagine my surprise when he told me he did not feel well enough – I felt so disappointed for his part. It’s been 3 weeks since the end of his first session of chemo – obviously the chemicals have started wearing off and the cancer is attacking his little body again. We feel so helpless and worried, especially since his oncologist had given us the bad news that his infection rate is 65% - it needs to be under 5% to be in remission. He needs to be in remission before they can do the transplant. Charmian and I get to the farm around 8pm – there was just so much
that need to be sorted out in Ladybrand. The situation is playing havoc
with our lives – I’m in Ladybrand 2 and ½ days a week
and she the other 2 and ½ - and we need to get a full week’s
work fitted into this time frame. But there’s not an option to do
it any other way – one of us will always be at his side. Thursday 4 September They did the bone marrow test this morning. Charmian says the doctor who did it was really gentle. The anaesthetic they give Damian puts him on a serious trip. He sees monsters and people with 2 heads. He also doesn’t know (or care) what he says and passed some unflattering remarks about the size of one of the nurses. She was not impressed, but the rest of the staff was in stitches. We’ll get the results tomorrow – these will decide if he’s ready for the next dose of chemo or not. If not, he’ll have to wait another week Then we get some good news – Damian can come out for the weekend. He must stay near the hospital in case problems develop, so Charmian takes him out to her parents’ farm, just outside Bloem. Charmian helped him set up a Yahoo mail account and his own Facebook profile – so he was busy with that the night. He says it’s a bit more complicated than MXit, and he notices that some people put pictures of their children or pets instead of themselves. Got a call from Louis, who is the manager of the band “Snotkop.” They want to help and Francois, the lead singer, has offered himself for a weekend as first prize. They’ll run it in conjunction with media releases. Amazingly, Francois, Johan (from the record company) and Yolanda (from Sondag Newspaper) are flying down on Tuesday to come meet Damian and do a story. Wednesday 3 September It’s the bone marrow drive in Ladybrand. Forty people registered and 36 actually turned up to be tested. Belinda Botha from the Blood Bank says this is quite a good achievement for a small town. But, having spoken to a few people who did not make it, it seems there were problems registering with the Sunflower Fund (not just in Ladybrand). I’ll try sort this out with them for future possible donors. I’ve got the SMS competition line going, but am just waiting for a few prizes. A number of people have said they will see what they can do – once we’ve confirmed the prizes, I’ll start advertising the competition. Tuesday 2 September. He likes this sleeping late thing now. But at 9am, I order him up and make his breakfast. I head back to Ladybrand at 12:00 and Charmian comes back to Bloem later the afternoon. His hair is almost all out now – only a few strands left. He says I must bring a few of his caps back wit me. Monday 1 September Damian slept until 1’0’clock – in the afternoon. The weekend and the day out was absolutely exhausting. Eventually I order him to wake up, just so he can eat. I’ve taken a video contract out at a nearby video shop. It’s not a bad deal, R100 gets us 6 newish DVD’s (not latest releases) plus 6 older titles. That’s 2 movies a day to keep him (us) occupied. Doctor says they’ll be doing the bone marrow test on Thursday (where they dig marrow out of his hip bone). His blood results are okay, so he doesn’t need blood or platelets. But the white cells are still too low to do the test for a bone marrow match. That night we go for a walk – sit and look at the lights for a while and then buy a couple of cooldrinks from the vending machine. Boy, did that end up being a mission – the machine only takes exact change, and I only have R5 coins. Sunday 31 September Not a very good night – he developed diarrhoea and ran a temperature of close to 38 degrees. Charmian was up almost all night with him – he really had us worried, but towards morning he started feeling better. There’s absolutely no way he’s going to miss out on his day out. We go to breakfast with the family and he orders the bumper breakfast, but just picks at it. He is so pale and tired, but refuses to admit it. There’s no way he’s going back to that hospital before he needs to. Our visitors are off – my parents’ plane leaves at 12:30. Angelique and Wayne will drop them off at the airport and then go back to Jo’burg from there. We decide to take in a movie – “You don’t mess with the Zohan.” It’s American slapstick humour at its best, but good for a few laughs and Damian enjoys it thoroughly. After the movie we go for a drive around the outskirts of Bloemfontein to use up time. He needs to be back at four to get his next batch of antibiotics and he won’t set foot in that hospital a minute before. We get back to the ward on time (definitely not a second early) and it’s back to bed. Charmian heads back to Ladybrand with Brandon and we watch a bit of TV. He’s absolutely exhausted, but also quite happy. It was a nice day. Saturday 30 August Damian slept well. He’s still getting antibiotics four times a day, so it’s regular interruptions from the nursing staff, but we’ve got used to it now. The doctor asked him if he’d like to go out for the day. I only realised how tired he was when he said he’d prefer to stay. But they did put a short drip on him. Basically, it means he has more mobility because they’ve disconnected the line into his chest and are using a vein on his arm Granny and all the visitors pop in to chat and ask him what he wants – games of course. No sweets or snacks – his appetite is back to normal. We watched the Springboks thrash the Ozzies – absolutely brilliant. Something else to smile about. Doctor said we can go out tomorrow, if he’s feeling okay and doesn’t have temperatures. After almost a month of being cooped up in the same room, day in and day out, this is absolutely fantastic news. Friday 29 August. Finally, his grandparents arrive. Granny brought a whole lot of his favourite chocolate milkshakes, and a few sweets and snacks. His aunty, Angelique and uncle, Wayne also come down to visit from Jo’burg. It’s almost like a family reunion – the room in the hospital is just a little crowded, so we need to schedule visiting times. It’s a lot of fuss and he’s been looking forward to it so much, but he’s also just so tired. Thursday 28 August I get back to the hospital at 5pm. He looks so bright and cheery, it’s unbelievable to think he’s lying there with a terminal illness. Damian’s hair has started falling out. Not in big clumps, but enough to notice. Once it starts, it should all be out within a week. His appetite has subsided, they stopped with the steroids – he has obviously gained enough weight again to satisfy the doctors. Wednesday 27 August Charmian say he hasn’t stopped eating – thank goodness for 2-minute noodles. She says Damian’s stomach has started growing and his cheeks are so cute and chubby – like a chipmunk’s.
Damian is quite excited about his Granny and Grandpa coming to visit. His appetite has begun to pick up. He had 3 toasted sandwiches for lunch and a half hour later was hungry again. Luckily his mother is taking over today so she can attend to his culinary requests. The steroids are definitely starting to kick in. Charmian arrived at around 12:00 – I went back to Ladybrand. Got a newspaper to get out. I’m hardly out the hospital and I start missing him already. Monday 25 August Not a bad night, for a change. Although I only went to sleep at around 2am, it was pretty uneventful. I only woke a few times to attend to his moans and groans. We’re busy registering a trust fund for the collection of money. Seems it’ll take a couple of weeks, but at least then the money collected will be accounted for by professional accountants and people might not be so wary of contributing. When you’re looking at a Million Rands of the public’s money, it’s best to be as transparent as possible. Got a few more calls from strangers wanting to help and a few friends who offered to do a bit extra, like organise a function to raise funds. My parents are coming up from Cape Town this weekend, as well as Angelique, my one sister, and her husband from Jo’burg. We’ll talk about functions in those cities as well. Sherri-Lee, my other, younger, sister, has managed to arrange that the proceeds from a Young Skals functions, be dedicated to Damian’s fund.
I spent the Saturday night on Charmian’s parent’s farm. Damian said I should get some rest, as I’d be with him Sunday and Monday Nights. I slept surprisingly well – only waking at 8:30. I think we don’t realise how much this situation takes out of us. You can’t think about a good night’s rest in the hospital. The nurses constantly move up and down the passages attending to patients and then take Damian’s vital signs on a regular basis as well. And then, of course, Damian also wakes up a few times during the night in pain, or needing the bathroom; or the drip needs attending to. But we do it without the slightest thought. There’s no way we can leave him alone in the hospital to face this disease on his own. I must say, I have been pleasantly surprised by the professional attitude of the staff in the ward – we’ve heard many stories of poor care in hospitals around the country, but the staff here are really quite capable. I got to the hospital around 10:00 – Damian was in a good mood. His urology problem seems to be getting better. But he constantly needs platelets and blood. Doctor says it’s expected – but it’s still worrying. He gets extra nauseous when he receives blood. The rest of the day is pretty quiet. Charmian went out to the farm to get Brandon and Candice, who spent the weekend with him (but they’re not boyfriend and girlfriend, mind you). They got back around 7pm and said their goodbyes, after which they went back to Ladybrand. Saturday 23 August A quiet day Charmian arrived at around 10 with Brandon – it gave Damian something to smile about. The Volksblad published the story about Damian and how he needs bone marrow. Damian was quite impressed with the article – says he like how they call him a tiger. The phone didn’t stop all day – calls and sms’es. Many people promised to have their blood tested – many more sent well-wishes and promises to pray for his recovery. We had a visit from Johan Botha, a former Springbok athlete. He donated a signed oil painting of Corné Krige and suggested we have a men’s night at which we could auction the painting. He had already spoken to Chris Badenhorst, André Venter and Corrie van Zyl, all of whom were very interested in assisting. Johan and Damian hit it off immediately – Damian says “he likes to talk.” We watched the Springboks lose to the Wallabies. It’s the first time I’ve actually seen Damian visibly disappointed in a game of rugby. Not because of the loss, but because of the way they played. He even commented to his Grandpa later – “the Springboks had no strategy.” Friday 22 August One of our more peaceful nights – only had to get up 6 or 7 times to help Damian. Shame, he still wants to be so independent. Like trying to go the bathroom by himself – drip and all. I wake up every time he moves or moans, so he doesn’t need to do it alone. I think he just hates that he constantly needs help. He has to get blood again today, which means the Hickman line stays connected, which reduces his mobility, which frustrates him even more. Although his legs ar so sore and his body in so much pain it probably doesn’t make a difference – it’s just the idea that he couldn’t even if he wanted to. I bought him a pair of nausea bracelets. At first he was sceptical, but now they’re on permanently. I don’t know if it’s in his head or if it really helps – something to do with acupuncture points. But he hasn’t thrown up in a while now, so maybe there is something in it. Nicholas came to visit. At first they were at a bit of a loss for words, so we decided to leave them awhile and then then they got to talking about all the goings on at school. Charmian let us know she would only come through the next day – she got away from work late, and the road between Ladybrand and Bloemfontein is not very safe on a Friday night. Thursday 21 August “How am I supposed to find a girlfriend if I’m stuck here in this hospital?” He’s obviously in better spirits, but it’s the pain medicine and relaxants that are helping him cope. The bruising on his navel is terrible – they really hurt him when they put the catheter in. His friend, Nicholas has promised him he’ll come visit tomorrow. He’s looking forward to it – it must be hell stuck in this small room, day in day out, permanently attached to a drip with not much other conversation than his parents, grandparents and the occasional adult family friend. I think he’s looking forward to catching up on the news from school and talking with someone his own age who has similar interests and to whom he can relate so much better. Stupid me – I sent out e-mails which have probably already traversed the world and I got Damian’s date of birth wrong – I’d corrected it on the website, but forgot to correct it in the letter that went out to everyone. Wednesday 20 August It wasn’t a good day. Nausea, pain, a runny stomach – we feel so helpless because we don’t know how much We’ve finally got the website up and running. Thanks so much to Hanri who designed it and has been getting information from all over the internet to put on it.
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To contact us: Tel/Fax: +27 (0) 51 924 5883 |
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