We arrived home at 12.30pm today. Earlier than expected, which was nice. It meant we had the afternoon in our own space. Oliver's surgery yesterday went well. He has now had his old port removed, and a new one inserted on the right hand side, where it was supposed to go originally. Given that the whole procedure took no more than an hour, compared with the four hours the first one took, I expect this one to work fine.
He didn't sleep well last night, so mum was kept up and didn't get much sleep either. I am constantly amazed at what she is capable of doing, and how much time, energy and happiness she has stored up for her little man. She seems to have a secret stash of love and patience all prepared for her little boy.
I realised on Friday that my job isn't to support and look after Oliver as much as it is to support and look after Karli. Mum is number 1 for Oliver, so I need to make sure she can give him the time and energy he needs from her. Fortunately, I think dad comes in as a close 2nd. After a week back at work, I think I have realised that I need to have more time available to support Karli and Oliver during the week, particularly on the days he heads in to hospital. So I think I will be cutting my work week back from 6 days to 4 for the next couple of months until we have worked out what the cycles are going to look like for us.
Next Sunday will be my first Father's Day. I'm so glad I have my little man in a healthier state to enjoy it with. Hopefully he won't have any side effects affecting him, and we expect to be at home.
On Friday we chatted to the mum of our little friend who had her leg removed. She seems to have taken it very well. Her athletics carnival is on next week and apparently she said very matter-of-factly that since she can't run, she'll go and help time and keep track of scores. I know I'd be using it as a perfect excuse to stay home. She even went to school twice last week - one week after having her leg amputated! She is an amazing little girl. You hear it all the time in hospital, and it sometimes seems so flippant, but kids are very resilient. And the kids that we have met are truly amazing. I hope I have their strength should I have to face the same battle.
Saturday, August 30, 2008
Thursday, August 28, 2008
A Crap Day
Hello all, its Karli here, I havent written for a while, but I just felt like it tonight, probably because I feel I need to do a little debriefing and venting. I think I thought that on this journey as we had experienced things before they would get easier but I discovered on Tuesday that they dont. I had to hand my little boy over to the team to be put under anaesthetic again and I cried. Now I find out today that I have to do that all again tomorrow as they have decided to remove Olivers port and put a new one in. We did think that this was coming and in the long run it makes things easier for him and removes some of the need for finger pricks, but that doesnt make it any easier for any of us.
To top it all off, I woke up to a steroidal monster this morning, he is eating us out of house and home, well not quite, but chugging down his solids and wanting to breastfeed with desperation, but the hardest part is because he is irritable, not knowing what he needs or wants - the same questions, is he still hungry? Is he in pain? Is he just grumpy? I like routine, so that fact that our routine is put out by all of this, I do not cope too well with. Needless to say that by the time I got the phonecall from Angela regarding the port I was none too happy and Simon got home at lunchtime to a screaming baby and a sobbing wife. I admit that this sobbing does not happen often and is something I should do more of, I tend to bottle things up until the volcano erupts and there is no stopping those tears.
Good news today is that I had a hair cut and a lovely head massage, although the thought of having to sit there and explain my life at the moment made me a little anxious, I managed to avoid the topic until 3/4 of the way through so I only had to talk for a little while about how sucky my life is at the moment. All the while the hair dresser is telling me to stay positive that that is the best thing to do and surprisingly I was quite calm and just nodded, but normally when people say stuff like that I get irate, as I feel that it devalues my feelings and my current situation and you know what sometimes I dont feel positive and dont want to be and want to be allowed to just say things are crap!
Blogs are good, but on some level I feel scared that you will all get to know more of the real me, which you may not like or it will no longer allow me to hide behind a facade of coping when I am not. I always feel compelled to add something positive at the end, knowing that everyone wants to hear positive, but I am not going to be sucked into that just because I feel it would make everyone feel better because that is not what this is about.
I thank you for reading and following our journey and for accepting us as we are and accepting that just like everyone we have our good days and our bad.
Oliver is going into theatre at 4:15 to have his port removed and a new one inserted, we would value your prayers for this and also that we would all remain sane as he has to fast for part of tomorrow and he will be very hungry - therefore making for a difficult situation.
God Bless
Lots of Love
Karli
To top it all off, I woke up to a steroidal monster this morning, he is eating us out of house and home, well not quite, but chugging down his solids and wanting to breastfeed with desperation, but the hardest part is because he is irritable, not knowing what he needs or wants - the same questions, is he still hungry? Is he in pain? Is he just grumpy? I like routine, so that fact that our routine is put out by all of this, I do not cope too well with. Needless to say that by the time I got the phonecall from Angela regarding the port I was none too happy and Simon got home at lunchtime to a screaming baby and a sobbing wife. I admit that this sobbing does not happen often and is something I should do more of, I tend to bottle things up until the volcano erupts and there is no stopping those tears.
Good news today is that I had a hair cut and a lovely head massage, although the thought of having to sit there and explain my life at the moment made me a little anxious, I managed to avoid the topic until 3/4 of the way through so I only had to talk for a little while about how sucky my life is at the moment. All the while the hair dresser is telling me to stay positive that that is the best thing to do and surprisingly I was quite calm and just nodded, but normally when people say stuff like that I get irate, as I feel that it devalues my feelings and my current situation and you know what sometimes I dont feel positive and dont want to be and want to be allowed to just say things are crap!
Blogs are good, but on some level I feel scared that you will all get to know more of the real me, which you may not like or it will no longer allow me to hide behind a facade of coping when I am not. I always feel compelled to add something positive at the end, knowing that everyone wants to hear positive, but I am not going to be sucked into that just because I feel it would make everyone feel better because that is not what this is about.
I thank you for reading and following our journey and for accepting us as we are and accepting that just like everyone we have our good days and our bad.
Oliver is going into theatre at 4:15 to have his port removed and a new one inserted, we would value your prayers for this and also that we would all remain sane as he has to fast for part of tomorrow and he will be very hungry - therefore making for a difficult situation.
God Bless
Lots of Love
Karli
Wednesday, August 27, 2008
A Long Day
As expected, yesterday was a bit of a marathon, especially for Karli. She didn't get home until 8.30, so was at the hospital for almost 12 hours. I had come home a little earlier. Oliver didn't actually start his chemotherapy until about 4pm. In the morning he had his blood taken and we were then fortunate enough to be given a room in the ward. With such a long day ahead it was nice to have some space to ourselves. After meeting with Dr Angela we headed off to the operating theatr rso that Oliver could have a lumbar puncture and some more bone marrow aspirations and trephines (suck out some marrow and take some bone). After getting back we then headed off to get an x-ray taken of Oliver's port to try to figure out why it wasn't bleeding back. Then it was back to the ward to wait for results of the x-ray. The decision was to use the line as it still allowed for fluids to be flushed in, so he had the necessary chemo given through his port and then they innjected some altaplase to dissolve a small clot that appeared to have formed on the end of his line that was acting like a valve. Unfortunately, the altaplase didn't work. They tried twice during the afternoon, then sent Karli home with altaplase in Oliver's line. They went back in at 8 this morning, but the line still wouldn't bleed back. It seems like we may have to have another one put in.
Oliver is steadily going down hill after his chemo. He is much more tired and clingy. He is starting to become a little more voracious with his eating. His bottom has started to break down again, and he seems to be in some pain. Hopefully we can get ahead of the curve with his bottom because it became quite bad last time. With any luck we will get a special barrier cream tomorrow.
He has a few more medications to take at the moment. The scariest being one of the new ones - mercaptopurine. It's scary because we need to wear gloves when handling it and avoid it touching any skin. But we are injecting it into his stomach. I'm sure it has something to do with the acidity of his stomach that it's harmless inside him, but it really brings home the nature of his treatment. It's going to be a long 11 months.
Oliver is steadily going down hill after his chemo. He is much more tired and clingy. He is starting to become a little more voracious with his eating. His bottom has started to break down again, and he seems to be in some pain. Hopefully we can get ahead of the curve with his bottom because it became quite bad last time. With any luck we will get a special barrier cream tomorrow.
He has a few more medications to take at the moment. The scariest being one of the new ones - mercaptopurine. It's scary because we need to wear gloves when handling it and avoid it touching any skin. But we are injecting it into his stomach. I'm sure it has something to do with the acidity of his stomach that it's harmless inside him, but it really brings home the nature of his treatment. It's going to be a long 11 months.
Monday, August 25, 2008
Quickie
Just a quick entry to keep you all informed of what is happening for us at the moment. I went back to work today. Although I wasn't particularly looking forward to it, it was great to be back and to see everyone who has supported us through these past few weeks.
Oliver is a normal little boy at the moment. he even looked like one last night after he pulled out his nasogastric tube. Unfortunately I had to take him back to the hospital to have it reinserted today. He is playful, and cheery, and energetic. It seems a shame to have to put him down to sleep. For now our challenge is regular parenting stuff. But that could all change tomorrow.
Tuesday is going to be a big long day, especially for Oliver. Tomorrow he gets 5 different chemo drugs - 2 of them are brand new, so we will have to wait and see what effect they have on him. He goes back on his steroids for 5 days at triple the last dose strength. He will also get some doxorubicin, which will likely cause him mucusitis and have him back in hospital by next Thursday. he also will undergo a general anaesthetic and have another bone marrow aspiration and trephine (marrow removed as well as a piece of bone) and will have a lumbar puncture to have methotrexate injected at the same time. Needless to say I am having a light day at work. I'll probably do that each Tuesday, though not every Tuesday is going to be like this one.
Friday's will be our other day in at hospital to get blood tests and a checkup.
As I filled people in on Oliver's health today I couldn't help but feel that it was all done and dusted and that life was back to normal. I'm not sure I seemed to excited about where Oliver is at, but I don't want to get my hopes up. It's hard to walk the fence between knowing he is clinically in remission, but that there may still be remnants and he still needs to finish off the next 315 days of chemotherapy. I suppose it's still a case of just taking each moment as it comes, and some of them will be very normal, and others will not.
Oliver is a normal little boy at the moment. he even looked like one last night after he pulled out his nasogastric tube. Unfortunately I had to take him back to the hospital to have it reinserted today. He is playful, and cheery, and energetic. It seems a shame to have to put him down to sleep. For now our challenge is regular parenting stuff. But that could all change tomorrow.
Tuesday is going to be a big long day, especially for Oliver. Tomorrow he gets 5 different chemo drugs - 2 of them are brand new, so we will have to wait and see what effect they have on him. He goes back on his steroids for 5 days at triple the last dose strength. He will also get some doxorubicin, which will likely cause him mucusitis and have him back in hospital by next Thursday. he also will undergo a general anaesthetic and have another bone marrow aspiration and trephine (marrow removed as well as a piece of bone) and will have a lumbar puncture to have methotrexate injected at the same time. Needless to say I am having a light day at work. I'll probably do that each Tuesday, though not every Tuesday is going to be like this one.
Friday's will be our other day in at hospital to get blood tests and a checkup.
As I filled people in on Oliver's health today I couldn't help but feel that it was all done and dusted and that life was back to normal. I'm not sure I seemed to excited about where Oliver is at, but I don't want to get my hopes up. It's hard to walk the fence between knowing he is clinically in remission, but that there may still be remnants and he still needs to finish off the next 315 days of chemotherapy. I suppose it's still a case of just taking each moment as it comes, and some of them will be very normal, and others will not.
Friday, August 22, 2008
Update
We came home on Wednesday afternoon as scheduled. Oliver had his bone marrow aspiration done in the morning while Karli went off to Centrelink She had to take identification papers to prove she was who she was in order to get the carers payment - what a shamozzle that turned out to be. Something so simple was, and still is proving to be, rather difficult. It's hard enough doing the right thing, why anyone would want to go through the rigmarole of defrauding Centrelink is beyond me. But, enough of all that.
We had a fairly nice afternoon on Wednesday and were looking forward to a good nights sleep, but Oliver had other idea's. He was fairly unsettled all night and most of the next day. We worked out that he was in some pain, at least that's what it seemed to be. It's so hard to work out what is happening for him. We don't want to give him something if he's just whingeing, but we don't want to hold back if he needs something either. I know this would be no different even without the cancer, but the cancer and chemo seem to make it just that little bit worse in our minds.
I met a young girl on Wednesday who has the same cancer as Oliver, only a she was little bit more advanced at diagnosis. I was chatting to her Dad and it seems to have been a rough ride for them so far, and also a tortuous path until a correct diagnosis for too. As I understand it, there have only been three children through the ward with ALCL, so given it's rarity it's nice to have someone to fight our common foe with. I hope to chat to the young girl just to find out how the chemo has affected her (she's about 12) and to get some idea of what might be happening for Oliver. Her dad mentioned that mum is destroying herself by reading things on the net. It's hard to get your head around the difference between adult and children's cancer. Unfortunately most of the information out there is about adults, since they make up about 97% of all cancer sufferers. So a lot of information is not terribly useful. I've pretty much tried to stick to specific organisations, and any other information is from sources that are focussed on children. You can probably guess that, given my lack of consistency with my blogs, I haven't done as much research as I would like.
We were back in at hospital today just to get some blood tests done, and Oliver was also tested for the flu as he has a bit of a cough and sneeze, and a runny nose and we think a sore throat. We were only there for about 2 hours, and the last 30 minutes was spent chatting to the consultant, which was really nice. We are so blessed to have Dr Alessandri looking after us. She is very bright, bubbly, caring and honest.
We were supposed to start chemo today but a procedure was missed on Wednesday, so that will happen on Tuesday and we will start chemo then. So we have about 5 days at home, touch wood, and we will hopefully get some good family time in. We are fairly tired though, and I'm not sure what family time will look like. Maybe a little picnic in the backyard is a good place to start.
I'll keep you posted on what's happening. Sometimes it seems like there isn't much to write about or I'm repeating myself, but this is as much for me as it is for everyone out there - feel free to skip bits you want. To update you on our little friend who had her leg removed last Friday, she is doing well and is off home today.
We had a fairly nice afternoon on Wednesday and were looking forward to a good nights sleep, but Oliver had other idea's. He was fairly unsettled all night and most of the next day. We worked out that he was in some pain, at least that's what it seemed to be. It's so hard to work out what is happening for him. We don't want to give him something if he's just whingeing, but we don't want to hold back if he needs something either. I know this would be no different even without the cancer, but the cancer and chemo seem to make it just that little bit worse in our minds.
I met a young girl on Wednesday who has the same cancer as Oliver, only a she was little bit more advanced at diagnosis. I was chatting to her Dad and it seems to have been a rough ride for them so far, and also a tortuous path until a correct diagnosis for too. As I understand it, there have only been three children through the ward with ALCL, so given it's rarity it's nice to have someone to fight our common foe with. I hope to chat to the young girl just to find out how the chemo has affected her (she's about 12) and to get some idea of what might be happening for Oliver. Her dad mentioned that mum is destroying herself by reading things on the net. It's hard to get your head around the difference between adult and children's cancer. Unfortunately most of the information out there is about adults, since they make up about 97% of all cancer sufferers. So a lot of information is not terribly useful. I've pretty much tried to stick to specific organisations, and any other information is from sources that are focussed on children. You can probably guess that, given my lack of consistency with my blogs, I haven't done as much research as I would like.
We were back in at hospital today just to get some blood tests done, and Oliver was also tested for the flu as he has a bit of a cough and sneeze, and a runny nose and we think a sore throat. We were only there for about 2 hours, and the last 30 minutes was spent chatting to the consultant, which was really nice. We are so blessed to have Dr Alessandri looking after us. She is very bright, bubbly, caring and honest.
We were supposed to start chemo today but a procedure was missed on Wednesday, so that will happen on Tuesday and we will start chemo then. So we have about 5 days at home, touch wood, and we will hopefully get some good family time in. We are fairly tired though, and I'm not sure what family time will look like. Maybe a little picnic in the backyard is a good place to start.
I'll keep you posted on what's happening. Sometimes it seems like there isn't much to write about or I'm repeating myself, but this is as much for me as it is for everyone out there - feel free to skip bits you want. To update you on our little friend who had her leg removed last Friday, she is doing well and is off home today.
Tuesday, August 19, 2008
Going Home - Hopefully
Hopefully we will be back home tomorrow evening. Oliver is off all of his intravenous antibiotics and will be off his morphine by tomorrow morning. After he has had his bone marrow biopsy done his drip should be removed and we should be able to head off home once he’s been given the all clear. His PET scan has shown that there is no active cancer sites, and his CT scan has shown that his spleen and kymph tissue has returned to normal size. His bone scan has indicated that there are some hotspots on his bones, but without doing a bone biopsy they can’t be 100% certain it’s not cancer. But with the other two scans, his bone scan is likely to be showing up areas that are healing, since bone takes much longer than other tissues. So this is probably the best result we could have hoped for.
He had much more energy again today and is very playful and inquisitive. He does seem to be having some tummy issues that are causing some discomfort, but he doesn’t appear to be in pain per se. We are looking forward to taking him home and having atleast a day of normality before we come back in on Friday for the start of his next lot of chemo. We could have a fairly serious drug regime after that, with the extra chemo, plus some magnesium, and no doubt some other support medications aswell.
I’m not sure I’m absolutely ready to head back to work and start living a normal life, but I know that we would never choose to take on these extra challenges if we were given a choice. I’m sure it will be fine, and I hope it will mean that I will be much more organised. Maybe the extra demands will mean that I will stop procrastinating on all the things I want to get done and I will actually do them. I’ll see what happens tomorrow.
He had much more energy again today and is very playful and inquisitive. He does seem to be having some tummy issues that are causing some discomfort, but he doesn’t appear to be in pain per se. We are looking forward to taking him home and having atleast a day of normality before we come back in on Friday for the start of his next lot of chemo. We could have a fairly serious drug regime after that, with the extra chemo, plus some magnesium, and no doubt some other support medications aswell.
I’m not sure I’m absolutely ready to head back to work and start living a normal life, but I know that we would never choose to take on these extra challenges if we were given a choice. I’m sure it will be fine, and I hope it will mean that I will be much more organised. Maybe the extra demands will mean that I will stop procrastinating on all the things I want to get done and I will actually do them. I’ll see what happens tomorrow.
Sunday, August 17, 2008
Doing Well
Karli had the day and night off yesterday and I have sent her home again tonight. She keeps beating herself up about it, but the truth is that she has been here every night and most of every day since Sunday. Mum is the source of all his nutrition and so she needs to be fully rested. Yesterday, Susie and Michelle came up from Perth and spent the day and evening with Karli. She came back this morning rested and looking brighter, though she still needs more good blocks of sleep. Last night, from all accounts, she got to do all the refreshing and enjoyable things she loves. Thanks Susie and Michelle.
Oliver continues to do well. He has a lot more energy and has been really playful the past few days. These videos were taken on Friday. I think we will be in trouble once we get the boy home. He looks like he’s ready to get going.
Oliver’s mucusitis is clearing up, as are the lesions on his skin. His morphine is slowly being reduced and he is off one of his antibiotics. They weren’t able to grow anything in his blood cultures, so it doesn’t look like he has any bacteria doing the rounds of his body. All in all, things are looking up at the moment.
Tomorrow the medical team will meet to discuss Oliver’s scans and other results and issues. We don’t expect any new information. We are going to have to sit tight as to what will happen with his port. I’m not sure what they will do at this stage. I suspect that they may try to needle him on Tuesday or Wednesday to see how it is working before they put him under another GA on Wednesday for a bone marrow biopsy. He may have to have removed an another inserted. This one should go a lot easier though.
His next lot of chemo will begin on Friday with 5 drugs. Two of them will be new to him, and the first 5 days of the cycle includes steroids. So we will have more side effects to watch out for come next week. I’ll also be heading back to work that week, so that will throw an extra challenge in to the mix.
So we are going along OK. We are tired and longing to get back home and have our little boy disconnected from all of his pumps and lines. I never realised how much I enjoyed being outside, and how much better it made me feel, until I had spent such long periods indoors. I hope Oliver enjoys being outside, because he will be sending a fair bit of time outside while he can. It will be his birthday in a couple of months and I’m looking forward to getting him a bike helmet and taking him for a ride in the bike trailer.
I should try to get some sleep while I can. You never know when it all might go pear shaped and sleep will become a distant thought.
Thanks again for your support.
Oliver continues to do well. He has a lot more energy and has been really playful the past few days. These videos were taken on Friday. I think we will be in trouble once we get the boy home. He looks like he’s ready to get going.
Oliver’s mucusitis is clearing up, as are the lesions on his skin. His morphine is slowly being reduced and he is off one of his antibiotics. They weren’t able to grow anything in his blood cultures, so it doesn’t look like he has any bacteria doing the rounds of his body. All in all, things are looking up at the moment.
Tomorrow the medical team will meet to discuss Oliver’s scans and other results and issues. We don’t expect any new information. We are going to have to sit tight as to what will happen with his port. I’m not sure what they will do at this stage. I suspect that they may try to needle him on Tuesday or Wednesday to see how it is working before they put him under another GA on Wednesday for a bone marrow biopsy. He may have to have removed an another inserted. This one should go a lot easier though.
His next lot of chemo will begin on Friday with 5 drugs. Two of them will be new to him, and the first 5 days of the cycle includes steroids. So we will have more side effects to watch out for come next week. I’ll also be heading back to work that week, so that will throw an extra challenge in to the mix.
So we are going along OK. We are tired and longing to get back home and have our little boy disconnected from all of his pumps and lines. I never realised how much I enjoyed being outside, and how much better it made me feel, until I had spent such long periods indoors. I hope Oliver enjoys being outside, because he will be sending a fair bit of time outside while he can. It will be his birthday in a couple of months and I’m looking forward to getting him a bike helmet and taking him for a ride in the bike trailer.
I should try to get some sleep while I can. You never know when it all might go pear shaped and sleep will become a distant thought.
Thanks again for your support.
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