Tomorrow is Karli's birthday. I won't let on how old she is, but it represents the midpoint for our family of birthdays. Mine was last Thursday, and Oliver's is next Sunday. Unfortunately, we will spend the start of tomorrow in at PMH. Oliver is due for some sedation at 8.30am so that he can have another echocardiogram and ECG at 9.30. With any luck we will be out of there by lunchtime. Karli has a hair appointment in the afternoon, and then we are having some people around for a bbq to celebrate her extra year. I'm not sure how focussed she is on it, I think a lot of mum's attention is directed at her little man's party next Saturday.
Unfortunately he is likely to be on steroids and so will be quite ratty, but I suppose it will be a fitting way of summing up his first year. Karli and I have both had our moments this past week or so when we have been 'over it'. In some senses we feel justified in our self pity, but we also know that there are many others who have it much worse. Our little man is happy and playful - and is in fact quite a little gigglepot. As I have often said, without his NG tube, you wouldn't know he was sick. We are looking forward to celebrating the strength, courage and tenacity of our little man.
Thursday, October 30, 2008
Wednesday, October 22, 2008
A Quick Visit
Yes, it was relatively brief today. We were walking out by 12pm, with Oliver already having received his small push of vinblastine, having had an always enjoyable chat to Dr Angela, and even collected our goodies from the pharmacy. Our little boy is still charging along. He is happy and cuddly and such a wonderful blessing to his mum and dad.
He passed a new milestone today - the first kiss of a girl. Our friends were in with their little baby girl and as they sat down together, Oliver leant over and gave her a kiss. It was very cute. Admittedly, his kisses are a little bit like a wet fish, but they are sweet just the same. We tried to get a photo, but there was a little bit of performance anxiety I think.
We head back in next Friday. He has another echocardiogram to make sure his heart muscle isn't being affected by the chemotherapy. Unfortunately it's on Karli's birthday, but hopefully it won't take all day. He won't be having another push of vinblastine because he didn't receive that particular dose (the third in the cycle) last time. So no more chemo for two weeks. It's great to know his body will be getting a rest. Enjoy the video's of our little man.
He passed a new milestone today - the first kiss of a girl. Our friends were in with their little baby girl and as they sat down together, Oliver leant over and gave her a kiss. It was very cute. Admittedly, his kisses are a little bit like a wet fish, but they are sweet just the same. We tried to get a photo, but there was a little bit of performance anxiety I think.
We head back in next Friday. He has another echocardiogram to make sure his heart muscle isn't being affected by the chemotherapy. Unfortunately it's on Karli's birthday, but hopefully it won't take all day. He won't be having another push of vinblastine because he didn't receive that particular dose (the third in the cycle) last time. So no more chemo for two weeks. It's great to know his body will be getting a rest. Enjoy the video's of our little man.
Wednesday, October 15, 2008
Back In The Game
Oliver's neutrophils were high enough to begin his next cycle today - just. He needs to be higher than 0.5 and he was 0.51. We were both a little tentative about him just scraping over the line, but it's done now, and he is back on track with his treatment. Excitingly, that means that he has had his last lumbar puncture. Every other time he has had one he has had another procedure happening on the same day, and so has generally had a general anaesthetic, or has been so doped up on pain relief that he hasn't needed any extra. This time he was given sedation purely for the LP, and he made it a memorable experience. Previously, when he has had scans that require him to be perfectly still, he has been sedated with chloral, and it has worked beautifully. This time, it seemed to only hype him up and he was not interested in going to sleep at all. After giving him 40 minutes to settle down the decision was made to give him another drug call clonidine and I would take him in to the treatment room so he could settle straight down on to the treatment bed. No way. The clonidine proved to be ineffective aswell. He looked to be tired, but he was partying - I actually wonder if he was hallucinating a little bit with the way he would stare at the ceiling, or hold out his arms for a hug from no-one. So, it was time for plan C. Droperidol was next on the list. It looked like this one wasn't going to work either, but he eventually nodded off and eventually you could have shaved his eyebrows off - if he had any. We are pretty happy about the lumbar punctures being finished with. Any procedure where someone is sticking a sharp implement around your child's spinal cord is always a bit nerve racking.
We saw our little one-legged friend today. What a champion. Always a smile on her face. Karli and I both chatted to her parents today. You want to be able to do something, or say something, but all you can do is sit and listen. I've said it before, but the kids on the ward are amazing. They just do what they need to do. They don't necessarily like it, but they just soldier on. And the parents, they do what needs to be done too. You can see it on their faces. Not surprisingly no-one is happy to be there. There is a look of resignation, contempt, and a little hatred - we don't want to be there, and we are angry that we have to rely on someone else to fix our child, that there is very little we can do for our babies (be they big or small), that we keep bringing them back to endure more treatment, and there is a lingering notion that maybe I am somehow responsible for my child's predicament. None of it is rational, of course. We are in fact doing the best thing for our child. We are not responsible for their predicament, but are responsible for them being able to receive the treatment they need - the very best treatment at the hands of some of the very best medical personnel. And in a strange way, while it is true that we don't want to be there and can't wait to leave, we do want to be there to support our friends and their children, and it hurts to leave them behind and go home when they must stay.
We saw our little one-legged friend today. What a champion. Always a smile on her face. Karli and I both chatted to her parents today. You want to be able to do something, or say something, but all you can do is sit and listen. I've said it before, but the kids on the ward are amazing. They just do what they need to do. They don't necessarily like it, but they just soldier on. And the parents, they do what needs to be done too. You can see it on their faces. Not surprisingly no-one is happy to be there. There is a look of resignation, contempt, and a little hatred - we don't want to be there, and we are angry that we have to rely on someone else to fix our child, that there is very little we can do for our babies (be they big or small), that we keep bringing them back to endure more treatment, and there is a lingering notion that maybe I am somehow responsible for my child's predicament. None of it is rational, of course. We are in fact doing the best thing for our child. We are not responsible for their predicament, but are responsible for them being able to receive the treatment they need - the very best treatment at the hands of some of the very best medical personnel. And in a strange way, while it is true that we don't want to be there and can't wait to leave, we do want to be there to support our friends and their children, and it hurts to leave them behind and go home when they must stay.
Tuesday, October 14, 2008
Chemo Tomorrow?
We head back in to the hospital tomorrow. If Oliver's blood is OK then he will be in line to start his third cycle. unfortunately, I don't think he has picked up enough. Of course we don't know, but he has been a little more sleepy and pale these last few days. I'm expecting that he won't have chemo tomorrow either, which raises the paradox of how I feel about his ongoing treatment.
From a nasty-chemicals-in-his-system point of view, we are glad he has been able to miss his last couple of treatments and just have a fairly regular life. The other side of the coin is that the treatments are destroying any lingering cancer cells, and keeping it that way. Without the treatment, I find myself wondering if we are giving the cancer a window of opportunity to resurrect itself, putting us back at square one. No point losing sleep about it. He may end up beginning his next cycle tomorrow. We'll have to wait and see.
We are really happy to hear that friends Wayne and Tammy are moving to Perth soon. Although we don't see them much, it's hard not to love spending time with them. I got off the phone with Wayne (Dougo) today and couldn't help but feel pretty special, that he was really excited at the prospect of catching up next week. We are looking forward to your arrival guys.
I often have people tell me about what's happening at home for them with their children, but with a regular disclaimer about it not being anything like what we have been through and that we have had a very rough ride, or that they don't think they could do it. I don't really know how to respond to that without belittling our predicament, because it is not one that I would wish on anybody. The truth is that you do what has to be done. I look at the mum's and dad's who come in to the gym each morning and am in awe. I know that many of them have a number of young children, many of whom don't sleep through the night, and that they also work fulltime jobs or are caring for a few kids while their partner is off working long hours. I'm not sure I could do what they are doing. One little boy who, apart from the cancer thing, sleeps well, runs almost to clockwork with his routine, eats everything we place remotely near his mouth, is tiring enough, and I have a flexible job that allows for nanna naps and early finishes. Parenting is a tough gig, and anyone who is doing it is probably doing it tough for most of the time. As for Oliver's predicament being much more dire than other children, in one sense it is. But kids get sick, and they can't tell you what is happening all the time, and so I think we all respond in as protective and caring way as we can, and if we don't get the right answers, we keep going in to bat for our little ones. I guess what I'm saying is, to all the parents out there, give yourselves a pat on the back, and all your little ones (and your partner) a big hug. It's ok to be protective and paranoid, because you'll never forgive yourself if you felt you should have done something but didn't. Never apologise for loving your babies. Kudos to all the mum's and dad's.
From a nasty-chemicals-in-his-system point of view, we are glad he has been able to miss his last couple of treatments and just have a fairly regular life. The other side of the coin is that the treatments are destroying any lingering cancer cells, and keeping it that way. Without the treatment, I find myself wondering if we are giving the cancer a window of opportunity to resurrect itself, putting us back at square one. No point losing sleep about it. He may end up beginning his next cycle tomorrow. We'll have to wait and see.
We are really happy to hear that friends Wayne and Tammy are moving to Perth soon. Although we don't see them much, it's hard not to love spending time with them. I got off the phone with Wayne (Dougo) today and couldn't help but feel pretty special, that he was really excited at the prospect of catching up next week. We are looking forward to your arrival guys.
I often have people tell me about what's happening at home for them with their children, but with a regular disclaimer about it not being anything like what we have been through and that we have had a very rough ride, or that they don't think they could do it. I don't really know how to respond to that without belittling our predicament, because it is not one that I would wish on anybody. The truth is that you do what has to be done. I look at the mum's and dad's who come in to the gym each morning and am in awe. I know that many of them have a number of young children, many of whom don't sleep through the night, and that they also work fulltime jobs or are caring for a few kids while their partner is off working long hours. I'm not sure I could do what they are doing. One little boy who, apart from the cancer thing, sleeps well, runs almost to clockwork with his routine, eats everything we place remotely near his mouth, is tiring enough, and I have a flexible job that allows for nanna naps and early finishes. Parenting is a tough gig, and anyone who is doing it is probably doing it tough for most of the time. As for Oliver's predicament being much more dire than other children, in one sense it is. But kids get sick, and they can't tell you what is happening all the time, and so I think we all respond in as protective and caring way as we can, and if we don't get the right answers, we keep going in to bat for our little ones. I guess what I'm saying is, to all the parents out there, give yourselves a pat on the back, and all your little ones (and your partner) a big hug. It's ok to be protective and paranoid, because you'll never forgive yourself if you felt you should have done something but didn't. Never apologise for loving your babies. Kudos to all the mum's and dad's.
Wednesday, October 8, 2008
Missed Again
Oliver avoided his chemo again today. His neutrophils are still too low, but we expect them to pick up fairly quickly for next week. It seems a little strange that we should get so excited about Oliver effectively being too worn down to have his treatment, but it has been so nice to come back from hospital early and have half a day all together. All things going well, next week should see him back in to a big day, with the joy of steroids coming our way. If the next cycles go to schedule, Oliver will be 'roid raging for his birthday party.
Our little man turns 11 months old tomorrow, and we have a party planned for Saturday 8th November for his first birthday. Mum is very excited. She is in the throes of putting his invites together. We originally wanted to make it a bit of a thankyou aswell and invite people who have supported us through our little adventure. Unfortunately we ended up with about 104 peopleon our invite list, which seemed a little excessive for a 1st birthday party, so we have had to limit our scope to family.
Oliver is continuing to thrive. He hasn't been weighed for a couple of weeks, but he sure feels like he's put on a bit of weight. With the amount he's eating I wouldn't be surprised. He has a healthy little appetite. He has a lot more control on his tummy and is able to turn himself around pretty effectively. He's still creeping backwards, but I don't think we want him to get super mobile too soon. We can see it will be a little more hectic once he's moving.
Our little man turns 11 months old tomorrow, and we have a party planned for Saturday 8th November for his first birthday. Mum is very excited. She is in the throes of putting his invites together. We originally wanted to make it a bit of a thankyou aswell and invite people who have supported us through our little adventure. Unfortunately we ended up with about 104 peopleon our invite list, which seemed a little excessive for a 1st birthday party, so we have had to limit our scope to family.
Oliver is continuing to thrive. He hasn't been weighed for a couple of weeks, but he sure feels like he's put on a bit of weight. With the amount he's eating I wouldn't be surprised. He has a healthy little appetite. He has a lot more control on his tummy and is able to turn himself around pretty effectively. He's still creeping backwards, but I don't think we want him to get super mobile too soon. We can see it will be a little more hectic once he's moving.
Oliver practicing his one arm pushups.
Oliver talking to Sebastian about soccer.
Thursday, October 2, 2008
Blissful Ignorance
Oliver was spared any chemo yesterday. His neutrophils were too low and he wasn't able to have the vinblastine push he was due, so we skip this dose and start a new cycle next week. It seems a little strange to completely miss a dose - it feels as if it's optional to have some of the treatment. I assumed that every dose was necessary, but apparently that isn't completely true.
We don't know how long he's been neutropenic for. The difficulty with weekly blood tests is that we don't get a regular idea of what is actually happening. It would seem that we have inadvertantly taken our neutropenic little boy to everything we would probably avoid if we knew - church, a group picnic, and mothers group. Hopefully he hasn't caught anything. Despite his low immunity, he is sleeping well, feeding well, and very playful and talkative. He's a little trooper and doesn't let much get him down. His bottom has started to break down a bit due to his neutropenia, and his scars are getting red, but he is still fighting and bringing smiles to our faces.
We don't know how long he's been neutropenic for. The difficulty with weekly blood tests is that we don't get a regular idea of what is actually happening. It would seem that we have inadvertantly taken our neutropenic little boy to everything we would probably avoid if we knew - church, a group picnic, and mothers group. Hopefully he hasn't caught anything. Despite his low immunity, he is sleeping well, feeding well, and very playful and talkative. He's a little trooper and doesn't let much get him down. His bottom has started to break down a bit due to his neutropenia, and his scars are getting red, but he is still fighting and bringing smiles to our faces.
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