To see what has transpired before, go here Wed 14 January Damian seems down, hardly excited at all that he is out of hospital – maybe he’s just worried about tomorrow’s blood tests. Thurs 15 We take him to the hospital for his tests and to clean his Hickman line. The nurse in the clinic does it quite quickly and relatively painlessly. The results come back and they’re good – he won’t be needing any blood or platelets. Damian complains of nausea and headaches – something is wrong. He should be feeling better, not worse. I get us fish and chips for supper and while he polishes his plate, although it takes him about half an hour Fri 16 The headaches and nausea are worse and he throws up once. We think it might be the heat or nerves for the the bone marrow test on Monday. Bad news – the one donor in Germany is not medically fit to donate stem cells. They’ve already requested samples from the second donor, but it will take another 5 – 6 weeks before we will know anything. Sat 17 We spend the weekend together again – it’s so nice to have him with us and all be together again under the same roof. The headaches aren’t subsiding and the nausea is worse – my stomach starts churning as I think about Monday’s test. Last month the infection was 10%, it needs to come down to 5% before they can start preparing him for the bone marrow transplant. Mon 19 Damian sees monsters and eight-eyed freaks. The Dormicum, which is the drug they use to anaesthetise him, really puts him on a trip. I wince as the doctor pushes the “corkscrew” into his hip bone to draw out a sliver of bone for the test. Damian screams in pain, then starts calling the doctor names for hurting him. It would be funny if it weren’t so sore. From the blood tests, he needs to get platelets to assist in clotting – we’ll get the results of the bone marrow biopsy tomorrow. 7:30pm I receive a phone call from a private number – it’s Damian’s oncologist. I know it can only be bad news as he asks to see me and Charmian early the next morning. Tues 20 Our worst fears are realised as the oncologist tells us the infection is back up to 90%. I struggle to fight back the tears as he carries on, giving us options – we can stop treatment, which would mean Damian gets sent home with an obvious outcome, or they can try one last treatment. However, this treatment is 25 times stronger than anything he’s ever had and therefore much more lethal as well. It is meant for adults and is a very, very aggressive form of chemo with a greater chance of causing death than of succeeding. I break the news to Damian, and while he sheds a few tears at first, he handles it so much better than I think anyone else would, asking questions and considering the options. We need to wait for the oncologist to present the final protocol and then Damian has to make the decision. But my mind is numb as I ask myself why, why why? His battle has come Thursday 22 January We go see the doctor about the treatment. Damian hasn’t yet decided whether he wants to go ahead or not. He’s been in hospital for the better part of 6 months now and it’s taken its toll. His frail little body bears testament to the months of needles, chemicals and frustration – bruises cover his arms and hips, tufts of hair struggle to take root amidst the continuing administration of drugs and his matchstick limbs are sometimes barely able to carry his weight. But that familiar gleam shines in his eyes again and despite the doctor’s warnings of the fact that this chemo will be 25 times stronger than anything he’s received, that he is going to feel worse than ever before – nausea, pain, blisters in his mouth, infection and a good chance that it might not even work – Damian’s resolve kicks in and he tells us to go ahead. But, he says they must only start tomorrow and we return to Ladybrand so he can spend the night at home and see his cat, Mike, again. Friday 23 Jan My stomach is a bundle of knots, churning like white-water rapids as they hook Damian up to the drip and begin the treatment. It affects him almost immediately. Usually when chemo begins, the nausea starts around 24 to 30 hours later. This time he is clutching at the bowl within 2 hours and I can almost feel his pain as waves of nausea wrack his body – he has nothing in his stomach but the chemo doesn’t care, causing continuous convulsions, never letting up. My parents and sisters come to visit. It’s not easy – Damian is not well disposed to visitors and the sight of him in such pain affects everybody. But, I know he appreciates their concern and support and he almost manages a smile every now and then. Saturday 24 Jan He has started shaking uncontrollably and his temperature is up to 38°. The oncologist decides to stop this drug – Damian at least got 70% of it, so the professor isn’t too worried. They’ll carry on with the balance of the treatment tomorrow. His chest is burning and he generally feels terrible. He has been throwing up every half hour for 3 days now and can’t get keep anything into his body. He stopped eating on Friday already, but now he can’t even drink his medicine, medicine that’s supposed to prevent certain reactions and side-effects. I practically force him to drink the one lot when they arrived, but he throws up immediately after he has swallowed them.
He has developed diarrhoea and now needs to run to the toilet every hour as well. I don’t know what his body is ejecting, because he’s not eaten a thing for 4 days now and cumulatively probably hasn’t drunk a full glass of liquid in that time either. Tuesday 27 Jan. “I’m sick and tired of feeling sick and tired!” Damian remarks after an umpteenth visit to the loo. It was another terrible night as he received blood and they had to monitor him on a half hourly basis – the lack of sleep does not help his frame of mind
Damian has developed a temperature of 39.7°. They administer painkillers intravenously and monitor him every 20 minutes. It’s coming down slowly and after 2 hours is at 39° - still not good, but at least it hasn’t gone up (yet). His temperature stays high the entire day. Around mid-morning, he gets up to go to the toilet and blacks out – his blood pressure is extremely low – 49 over 26. Now, if you think that the average blood pressure should be around 120 over 80, you’ll realise just how low this is. He has a pain in his back between his shoulder blades, but x-rays show nothing. Thursday 29 They decide to move him to ICU – his blood pressure won’t stabilise and the temperatures won’t go lower than 38°. He is in so much pain and continually needs blood and platelets. I go cold as the attending physician tells me how bad it actually is. His kidneys are failing, he has severe infection and has developed pneumonia in is right lung. It’s so bad, that they have to punch a hole in his chest and insert a tube into his lung to drain it. About half a litre of vile, opaque, bloody liquid runs out with a speed – further x-rays show the lung is clearer, but they leave the tube to carry on draining. The doctor says that if he doesn’t start improving, they’ll have to put him on a ventilator and introduce further life support machinery. His kidneys are a major worry as well, and dialysis looks pretty certain. They can’t give him morphine, because his blood pressure is too low, so they’re giving him Paracetamol intravenously. Charmian forces me to go to her parents’ farm to get some rest – it’s been the worst week of my life with Damian not sleeping for more than a half hour at a time since Sunday and continually needing assistance and/or consoling. I let her convince me and take Brandon out with me – he realises something is terribly wrong, but doesn’t say a word. Friday 30 I wake up around 8am, feeling flat but a little better and head back to the hospital where Charmian has had a terrible night. Damian is in constant agony and has developed diarrhoea so bad that his stomach goes at least every hour. As I arrive, they’re putting in another drip, this time into his leg. He screams at them to stop, but there is no choice. He now has the central line into his chest, a line into the artery of his right wrist, a line into a vein on his left wrist and this new line into a vein on his foot. It’s just that he needs to get so many different medicines, on top of the bloods, and they’ll be starting intra-venous feeding this afternoon. He’s starting to drift in and out of consciousness, sometimes he is quite coherent, but he can hardly talk because of the pain cause by the pneumonia. Other times he asks for things and says things that really don’t make sense. The oncologist says it looks like they’ll be giving him the dialysis from tomorrow – the specialist will confirm in the morning. Charmian and I take turns looking after him – he mumbles and moans all night, he is losing his grip on reality fast. Saturday 31 Jan Damian has punched himself in the eyes and they’ve gone purple/blue/black. He is terribly irritable and seems to be itchy all over – probably because of the kidney problem. The urologist checks him out and consults with other doctors for about an hour before they give us the good news – Damian won’t need dialysis (for now), but they’ll monitor his kidney function very carefully. He explains that Damian is extremely sick, his bone marrow has been wiped out and he has no white blood cells. It is only the medicines, blood and intravenous feeding that is keeping him alive. He didn’t have to tell us. Damian has now slipped into a total dream world – not quite a coma, because he can move and responds to certain things, like our voices and pain. And he mutters comments every now and then – like how he won’t take nonsense from anyone and his dad must sing to him before he’ll take his tablets. It’s almost funny, but it pains us to see him like this. I go get him more nappies – when I get back, they’ve put another drip into his left foot now – the one on the right foot seems to have closed and they can’t get the fluids in. The diarrhoea is terrible and is making his bum raw – it just doesn’t stop, sometimes even while we’re changing him, it just runs out. They don’t want to give him anything to stop it though, in case it causes an infection in his bowels.
They’re still worried about his kidneys, but the nephrologist says it’s still acceptable. They’ve stopped the intravenous Paracetamol because he hasn’t had any temperatures for a while now. He hardly responds now when I talk to him – I hope whatever is putting him out like this gets sorted out quickly. He now has a terrible rash on his bum from the diarrhoea and I go to the chemist to get a better cream – hopefully this one works. The problem is, the skin doesn’t get time to heal between “emissions” and they can’t really do anything to stop it or catch it otherwise. He cries out every time we clean him. It’s with a heavy heart that I return to Ladybrand – Brandon has school tomorrow. He is also visibly shaken after seeing his big brother in the condition he is. Charmian will stay with Damian until tomorrow night Monday 2 Feb A more peaceful night as the stomach bug seems to be under control. At least his bum can start recovering. The kidneys are okay, the blood pressure is good and the lung is still alright, but we don’t know why he is in the state he is in (if there is a specific reason). But they’re going to do a CT scan as they’re worried there has been inter-cranial bleeding. They've put him on a respirator now -what's happening?
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