Well, as you probably could have geussed, I came down with Karli's bug on Wednesday afternoon - and we think Oliver did too. Fortunately, it didn't get either of us going too much, but did have our tummies doing cartwheels for a while. So I took the rest of the week off just to make sure I didn't give it to any of my clients - not good customer relations.
Oliver had some diarrhoea and a very large spew - so I'm told, I was having my own little show in the bedroom - but then seemed to suffer mainly from an upset tummy. It has made him much pickier about his food, but hopefully that will disappear soon. Karli had to take him back in to hospital on Thursday because he spewed his tube up. Fortunately we had a new one put in because the other one seemed to be doing a considerable amount of leaking. He was given a once over by the doctor, but because he was drinking well and holding everything down (and in) there was no cause for alarm.
It was hard to keep myself locked up in quarantine for the day. It is special to hear him get excited whenever he heard my voice later in the afternoon though. Apparently he has some fondness for his dad.
We're all on the mend now. Still a bit tender and choosey about what we eat, but everything seems to have settled down fine.
This blog begins as my wife, Karli, and I come to terms with the recent diagnosis of anaplastic large cell lymphoma in our 8 month old son, Oliver. My intent is to keep our friends, family and interested parties informed, and to hopefully help Karli and I to process this unwelcome intrusion into the life of our beautiful little boy.
Friday, January 23, 2009
Tuesday, January 20, 2009
One Week On (or off)
Well, it seemed that maybe I didn't need to take the time off last week. Oliver was pretty good until Sunday. Even then, he hasn't been as much of a handful as he has previously. But I had the chance to get a taste of life on the other side for the past 2 days.
Sunday night Karli came down with some nasty gastro-like bug that had us both up at 3 in the morning. Karli was in no state to look after Oliver on Monday, so I took the day off to chase after him. Needless to say I was pretty exhausted by the end of the day. Mum was a little better on Tuesday, but still not able to look after our monkey, so I skipped work today too. I'm looking forward to going back Thursday for a rest! The week off has been a bit tiring. Oliver was pretty excited to see his mummy today, after she was quarantined for 36 hours - and so was I.
Oliver seems to have a bit of a sore tummy tonight. It's the same as last time. However, I've just been in to check on him andI think there was a familiar smell in the air. Any problems may have worked themselves out.
We have been given a reprieve and don't need to head in for a blood test tomorrow - Oliver's thumbs won't know themselves.
Oliver has been walking with his trolley for a while now, but in the last week he has learnt to turn himself around. Here's a bit of video. It's probably more impressive to us than you, but we think he's pretty amazing.
Sunday night Karli came down with some nasty gastro-like bug that had us both up at 3 in the morning. Karli was in no state to look after Oliver on Monday, so I took the day off to chase after him. Needless to say I was pretty exhausted by the end of the day. Mum was a little better on Tuesday, but still not able to look after our monkey, so I skipped work today too. I'm looking forward to going back Thursday for a rest! The week off has been a bit tiring. Oliver was pretty excited to see his mummy today, after she was quarantined for 36 hours - and so was I.
Oliver seems to have a bit of a sore tummy tonight. It's the same as last time. However, I've just been in to check on him andI think there was a familiar smell in the air. Any problems may have worked themselves out.
We have been given a reprieve and don't need to head in for a blood test tomorrow - Oliver's thumbs won't know themselves.
Oliver has been walking with his trolley for a while now, but in the last week he has learnt to turn himself around. Here's a bit of video. It's probably more impressive to us than you, but we think he's pretty amazing.
Wednesday, January 14, 2009
Cycle 7
Almost halfway. Soon we will be able to start counting down the days until we won't have such regular visits to the hospital. The day went quite well. Karli and I were both relaxed and easy going about it all today, which is fairly unusual. Oliver was his usual beautiful and cute self, playing up to all the nurses and enjoying the attention. We even managed to get him to sleep today - probably due to the fact that we were put in room 6, and so had a nice quite space to ourselves. We even managed to finally catch up with the music therapist, Louise. Every other time we have tried Oliver has either been too unwell, asleep, or we have taken off before she was available. I think Oliver enjoyed it. He seems to like music and is always keen to bop along.
We've been having troubles with his nasogastric tube of late. Apart from the couple of visits to the hospital to have it re-inserted after our ratbag pulled it out, it seems to be getting blocked more regularly, making it difficult to get his meds in. It has been more of a nuisance up until now, because for the next 5 days we will be giving him his steroids and there is a specific amount he needs to get. He also receives mercaptopurine, the one that I need to administer with gloves. needless to say, I'm not too keen on that coming out and going all over the place. It worked okay for us tonight, so we will keep our fingers cross.
As always, it is difficult to feel to sad for ourselves when we consider the plight of our friends around us. One of our little friends shaved her beautiful red hair off on Monday before it all fell out. I'm looking forward to seeing her in her blonde wig - though she may not bother wearing it to the hospital as bald heads don't really stand out. Another young bloke kissed his AFL dreams goodbye with some serious arm and leg surgery that will take years to recover from. We learnt today that 3 young teenagers lost their battles in the lead up to christmas. And unfortunately, there seems to be a fairly large number of new faces in the waiting room. Our plight is so very, very relative.
On a brighter note, one little guy who is 2 weeks older than Oliver is almost finished his treatment. It was so good to see him with some hair and colour, crawling around without a drip in tow, and to see his mum looking noticeably relaxed - as relaxed as you can get in her shoes anyway. We only pray that he has a bright future that only takes him further and further away from the hospital.
After Oliver's last treatment before christmas we decided that it might help if I stayed home for a few days after the next lot, so I'm not working until Monday again. I know, what a life.
Here's a video of Oliver with Louise, the music therapist.
We've been having troubles with his nasogastric tube of late. Apart from the couple of visits to the hospital to have it re-inserted after our ratbag pulled it out, it seems to be getting blocked more regularly, making it difficult to get his meds in. It has been more of a nuisance up until now, because for the next 5 days we will be giving him his steroids and there is a specific amount he needs to get. He also receives mercaptopurine, the one that I need to administer with gloves. needless to say, I'm not too keen on that coming out and going all over the place. It worked okay for us tonight, so we will keep our fingers cross.
As always, it is difficult to feel to sad for ourselves when we consider the plight of our friends around us. One of our little friends shaved her beautiful red hair off on Monday before it all fell out. I'm looking forward to seeing her in her blonde wig - though she may not bother wearing it to the hospital as bald heads don't really stand out. Another young bloke kissed his AFL dreams goodbye with some serious arm and leg surgery that will take years to recover from. We learnt today that 3 young teenagers lost their battles in the lead up to christmas. And unfortunately, there seems to be a fairly large number of new faces in the waiting room. Our plight is so very, very relative.
On a brighter note, one little guy who is 2 weeks older than Oliver is almost finished his treatment. It was so good to see him with some hair and colour, crawling around without a drip in tow, and to see his mum looking noticeably relaxed - as relaxed as you can get in her shoes anyway. We only pray that he has a bright future that only takes him further and further away from the hospital.
After Oliver's last treatment before christmas we decided that it might help if I stayed home for a few days after the next lot, so I'm not working until Monday again. I know, what a life.
Here's a video of Oliver with Louise, the music therapist.
Friday, January 9, 2009
Nothing to Report
It's been a while since we have written. it seems that I can't really muster too much enthusiasm for it at the moment. Hopefully, I might find some over the next few days.
Our little man is doing well at the moment. His blood counts are good, higher than they have been for quite a while thanks to the change of chemotherapy. It seems the effects of his last treatment have hung around for a while. Only today does he seem to be back to his usual self. Unfortunately, he gets another dose next Wednesday. I don't think he has ever been affected for quite so long - at least we haven't noticed it.
I have found myself wondering about his development lately. I should probably have a better idea of where he should be, but I do know enough to know that there are very large differences between children at the best of times, that he was practically bed-bound for 6 weeks at least, that the chemo puts him on such a rollercoaster that he doesn't know what's happening, and that at such a young age, he has plenty of time and opportunity to recover. Then there is the question of any side-effects that we haven't discovered yet. He's happy, crawling well, walks well behind his little block trolley, is affectionate, giggly, bright, responsive, and we think is using some very basic signs to tell us if he wants "more" food or is "all done". So I probably shouldn't worry, but I suppose all parents do.
Oliver turned 14 months old today. Tomorrow is exactly 6 months since his diagnosis - 10th July, 2008. 6 more months of treatment to go. How can one so small be so courageous.
Our little man is doing well at the moment. His blood counts are good, higher than they have been for quite a while thanks to the change of chemotherapy. It seems the effects of his last treatment have hung around for a while. Only today does he seem to be back to his usual self. Unfortunately, he gets another dose next Wednesday. I don't think he has ever been affected for quite so long - at least we haven't noticed it.
I have found myself wondering about his development lately. I should probably have a better idea of where he should be, but I do know enough to know that there are very large differences between children at the best of times, that he was practically bed-bound for 6 weeks at least, that the chemo puts him on such a rollercoaster that he doesn't know what's happening, and that at such a young age, he has plenty of time and opportunity to recover. Then there is the question of any side-effects that we haven't discovered yet. He's happy, crawling well, walks well behind his little block trolley, is affectionate, giggly, bright, responsive, and we think is using some very basic signs to tell us if he wants "more" food or is "all done". So I probably shouldn't worry, but I suppose all parents do.
Oliver turned 14 months old today. Tomorrow is exactly 6 months since his diagnosis - 10th July, 2008. 6 more months of treatment to go. How can one so small be so courageous.
Don't get too excited. This is minutes before we headed back in to the hospital to have his nasogastric tube reinsterted.
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