Amazing Kids

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.

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

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.

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.

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.

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.

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.

The good news is that the PET scann seems to have been as good as it could have been. There are no areas in Oliver where the cancer is active. He had a CT scan yesterday and a bone scan today, but I expect that these will tell us that the affected areas in Oliver's body will have shrunk back to the size they were supposed to be, and that any lesions on his bones will have disappeared. We won't know for real until Monday or Tuesday. But yesterday was the first time the 'remission' word came up in discussions. I feel like that should fill me with joy and make me sing and dance around, but it doesn't. Oliver still has 11 more months of treatment, 11 more months during which we could have a significant amount of time at PMH, 11 more months of side effects, 11 more months in which to see new faces come through the doors to 3b. And we will live with the dark cloud of relapse hanging over our heads. But for now, he is winning, even if he doesn't always look it. Carpe diem will be our cry from now on.
It seems that Oliver's little tummy, or bowel, is cramping up a bit, causing him to not sleep terribly well. It didn't seem to cause him much pain today, but he wasn't in a good way last night, needing his morphine turned up. Tonight they will try a different drug to see how well it works.
He does seem to have a greater amount of energy. He didn't sleep much today, but was quite playful, which was lovely. He hasn't been as boisterous and active in his play for a quite a while. Unfortunately, yesterday they had to put a drip into his hand, so his right hand is bandaged up and splinted, meaning that he can't really grasp things to well, though it isn't really stopping him. Hopefully he will settle and sleep well for mum tonight - she needs a good block of sleep.
Karli and I took off for an hour tihs evening for a drink. Unfortunately I only had a pair of denim shorts on, so no Subiaco bar is going to let me in, so we ended up in Dome. We sat and cuddled and chatted a bit, but for the most part we just watched people, and allowed ourselves to be distracted by what was happening around us. We hardly had the capacity to really talk too much about anything in depth.
The weekend should be fairly quiet as far as procedures and anything new goes, as long as the canula in his hand keeps on keeping on. Monday or Tuesday a decision will need to be made about his port. It could be infected and need to come out, which would be a bummer. There's always something. What constitutes normal life will be quite different for us over the year to come.

Two Edged Sword

Mum and Olly had a rough night last night. Oliver's tummy is pretty upset, so not much sleep was had by Karli. His funny tummy has resulted in a practically perpetually running bottom, and the occasional very nasty looking diahorrea. I was over it by the end of today and I find it hard to not have somewhere to direct my anger. Olly is in fairly constant pain and discomfort, and can't tell us what is going on for him, and can only do what babies do, let it all out when it wants to come out.
It's the chemo that is doing this to him. The mucusitis, the susceptibility to infection, the funny tummy, the diahorrea, the drooling, the hair loss, the irritability, the pain and discomfort. It's the drugs we are giving him that are causing all these things. You're damned if you do and damned if you don't in a way. And there are no guarantees as to whether or not it's going to pay off. I hate it and what it is doing to my boy.
But of course there is a reason for it. We had a PET scan today. This scan is meant to pick up the hotspots of cancer, where it is doing the most growing. I haven't got anything specific, but apparently the scan showed that the chemo was working well. So it seems the chemo is doing everything it is supposed to do. I only wish it would just go for the cancer.
So we have a very big positive, but it's the negatives that we see everyday, and they are wearing. Tears, moaning, blood, itching, increased pain relief requirements, mouth care regimen's, bottom care regimens, special cream for lesions on the skin. Tomorrow we have a CT scan and bone marrow aspiration. During this time they will reinsert a canula and de needle Oliver because his port seems to be a bit infected and isn't doing what it should. We may be looking at surgery to rectify the problem. There just doesn't seem to be an end in sight, and it doesn't look like it will ever be an easy ride.

Today's Entry

I don’t know how I would describe the day. It has been a day of variety. Slowly we are beginning to grasp what is happening for us.

I didn’t stay at the hospital last night. I have been given my marching orders. So from now on I will head home at night and go back in the morning. I will try to remember that there is peak hour traffic next time. It took a while to get in today. As I drove in, I couldn’t help wondering what might have been happening for those people in the cars around me. For all I knew, some of them were making the same journey I was.

Oliver had another large and overly disgusting poo last night so I was thankful I wasn’t there. It was so bad that his little suit was thrown out. More trouble bleeding his line resulted in us getting a chest x-ray, and his bowel motions coupled with his obvious discomfort had him in for an ultrasound too. This was quite the marathon experience, with him being scanned by 4 different people so that they could get a consensus on what they were seeing. It wasn’t anything terribly bad. His mucusitis has inflamed his bowel, and some of it has folded over on itself. Just another thing to keep an eye on. Oliver’s bloodwork hasn’t been great of late. He has a bacterial infection, though no fever at the moment, and has zero neutrophils. He is getting potassium and magnesium infusions because, as we learnt today, the chemo can cause the kidneys to leak these minerals, and so Oliver hasn’t got enough in his blood. He has also developed some lesions on his skin that are somewhat baffling for the medical staff. His mouth has started to bleed from the mucusitis, his heart rate is racing along, and in order to keep him comfortable, he is back on a morphine injection. Despite all this going on for our little boy, he still managed to lift our spirits with giggles during peek-a-boo with mum, and dad was able to play with him a little bit during the day.

If all goes well tomorrow, we should be able to have his PET scan done at Charlie’s in the morning, and then hopefully have his skin looked at by the dermatologists back at PMH. All of his scans hinge on how well he is, as he needs to be either sedated or put under a general anaesthetic for them.

We learnt an interesting statistic today. Although it is a statistic from British Columbia in Canada, I can’t imagine it’s a big stretch to apply it here. Of children under 15, only 1.2 in a million get ALCL. So our little man is 1.2 in a million. Our consultant, Dr Angela Alessandri told us that. How does she know? She actually wrote the book, or at least the article – A Population-Based Study of Pediatric Anaplastic Large Cell Lymphoma . If you want to read it try http://www3.interscience.wiley.com/cgi-bin/fulltext/91016206/PDFSTART. Going through this, you want to know you have some good people on your side. I think we have been lucky enough to have found the best.

What you don’t want are people who make it harder. We have also found a few of those in hospital. I’m sure that it is just personality clashes, but I think we will be coming to the point of requesting that certain staff don’t deal with us. It’s tough enough without having to clash with staff.

Speechless

The experience of your child going through cancer is not easy to comprehend. We know that there are many people who are incredibly sad for us and for what our family is going through. But the other families who are sharing our experience, the ones we see far too regularly when we visit the hospital, they know. They understand. And though we all deal with it in different ways I think we all understand what each of us is going through. And so, when someone we have come to know gets bad news, we all feel it. We understand it's ramifications for the affected family, but there is also the thought of "what if that is the same for my child?"

We have each spent a lot of time talking with other parents about this journey we are all on. Often we will return half an hour after we have gone to the kitchen because we ended up chatting to someone. We share with each other what our children are going through, and there is no need to explain it, because we each understand what it means for our child to be constipated, or on steroids, or to have mucusitis, or to be neutropenic, or to be having chemo. And so, you make friendships with parents, and you come to have a love and affection for their children. In a strange way, I feel as if we are all the parents of all the children in the ward. And so news that is devastating to families, is also devastating to us. In the last couple of days, we have shared a bit of some others journey's, and they have left me unable to say a thing. And sometimes there is nothing to say, other than to console, and reflect the unfairness of it all, often with a couple of choice expletives. One of our friends faces the choice of whether or not their child should get radiotherapy. There are so many if's, but's, and maybe's that the decision is far from easy. And the consequences of either choice could be devastating. I don't think we will have a similar situation with Oliver, but we never expected to be where we are either.

I ran into another of our friends today, and having not realised they were in the hospital, asked if they had been in for a checkup or some outpatient treatment. Unfortunately, they had been in for a meeting. The chemotherapy that their beautiful young daughter had been enduring - that had caused her to lose all her hair, be extremely nauseas, go through the rigmarole of mouth care, and who knows what else - had not produced the desired effect. The only other option was an amputation. Of her leg. At the hip. She is 9 years old. I was speechless. I couldn't say anything. I hugged her, got a few details, and we went our separate ways. And it was all I could do to keep from breaking down in tears in the cafe in the hospital.

I am yet to deal with our situation in any meaningful way. This news brought that home to me. This week is a big week of followup scans for Oliver. Someone said offhandedly today that these scans weren't that important, but they are vitally important. These scans will give us an indication as to how effective the chemo has been. These scans could indicate that Oliver's chemo is doing everything it should and will run exactly to plan. They could also tell us that we need to do more, that the current protocol isn't working and we need to make some changes. I haven't considered the real nature of it all - that this is cancer, and the chemo isn't the same as giving antibiotics for a simple bacterial infection. This may not work. Oliver may not be making the progress we expect. I believe that he is improving, but I don't know. I can only hope that the chemo is doing the trick.

He was better today. We have so far been able to avoid the morphine, and he wasn't overly unsettled today. We did have an extremely funny experience with a very runny, green and copious poo, followed by a fairly substantial wee while we were cleaning up. But changes can be swift, and we only hope that we, and the staff, can intervene early so that small changes don't cause big problems.

If you have a friend who is experiencing what we are going through I have a suggestion. Make them a meal, give them a hug, and just let them know that they can call on you at any time. it's hard for us, but I am learning that we need to be direct, humble, and to take people up on their offers.

To our friends from PMH - we love you, and will support you in any way through this time.
To our friends outside PMH - thankyou. You may not get it personally, but thankyou.

Hospital, Sweet Hospital

Well, we are back in PMH. Oliver had a few vomits last night, one that brought up his nasogastric tube. He then decided to get a temperature. The rules are that when he gets too high a temp, we head back in to Ward 3b. So we lodged back in at the hospital at about 4.30 this morning.
They have taken blood to see if it grows (blood cultures) and since this takes 48 hours, we are in for at least that long. In the mean time he is started on antibiotics just in case. He certainly seemed to take a turn for the worse quite quickly. At 6pm he was quite happy, but by a bit later in the night everything went awry.
I've come home to grab a few bits and pieces that we missed before heading back in. Nothing important, just a few little luxuries. Karli was all set to go when the time came. All we needed to do was throw the suitcases in the car, buckle up, and go. I had better do the same now.

Alone

Tonight is the first time we have been alone in the last 5 weeks. Mum went home today, and I must admit the place is already a bit of a shambles. Thanks again mum, for everything. After a visit from Grandad and Uncle Jarrad this afternoon, Karli and I were left to our own devices, and as expected we have been a little low. I made sure I had something that I could focus my attention on. Karli is feeling a bit anxious, understandably, and the whole situation is overwhelming for both of us. It still sounds quite foreign to say that Oliver has cancer, and I can feel us slowly approaching a collapse. I think we need it.

As Oliver continues to be more affected by his side effects, it becomes necessary for us to become more and more atuned to his cries and to be more ready to provide any pain relief he may need. This isn't an easy task. We are reticent to give him more drugs than he needs given the amounts that are being pumped in to him, and will continue to have pumped in to him over the year. But we need to remember that he is possibly (probably) in a fair amount of pain, and if not pain per se, he is likely to be feeling mighty uncomfortable. We think his mucusitis is gradually worsening, and his little bottom isn't in a good way either, though he is filling his nappies regularly. We just need to be on to it asap so that he doesn't sit in it for too long.

That said, Oliver had a pretty good day. He played well this morning, but has become increasingly unsettled as the day as passed, and is quite unsettled at the moment. I took him for a drive today but he didn't fall asleep as we would normally expect him too. In the mix of what's going on for Oliver is also the reality of the fact that he is a little 9 month old boy, and so we need to take that in to account when we are trying to figure out what our next step is.

What we do know is that we love our little man and that he brings so much joy to our hearts. It is so lovely to be able to cuddle him up; to sit and read him a story while he sits on my lap; to have him relax almost immediately when I kiss him on the cheek when he's in bed; to have him gaze at me and smile; to have him reach out for me when he's playing, just to make sure I'm still there. It's nice to know that despite my inability to do much for him, he still wants me there.

Outpatients (or is that out of patience)

We were back in the hospital again today for our first check-up and first out-patient experience. We expected to be home by lunchtime, but that changed. I think we need to get used to our plans changing at the last minute fairly regularly, at least for the next year.

Oliver’s blood counts were OK, though they are dropping again. His mouth is starting to get sore and the mucusitis is beginning to rear its ugly head. I suspect that when we go back in on Monday we may be staying for a few nights. Next week we have a bone scan and more chemo on Monday, a PET scan on Wednesday, and a CT scan on Thursday. For some of these he will have to be under a general anaesthetic so that he doesn’t move. If his mucusitis is bad enough to warrant morphine again then Karli and Oliver will be staying at the hospital for a few nights. I won’t be staying this time around – I shouldn’t really have stayed last time. But I’ll probably leave fairly late and get back fairly early. Maybe it’s time to start seeing how well the van works for camping in. We need to work out how to operate without me at the hospital as I will need to go back to work soon anyway. It’s just going to be tough. When you can’t do much, you hold on to what you can do, even if it’s pretty much useless.

Oliver was low in magnesium again today so he needed a transfusion – thus the reason for needing to stay in a bit longer. He needed a transfusion on Monday to, so I’m not sure what is happening there. Another question for our doctor. The problem with decisions about giving medications, blood, minerals, etc is that they then need to be made up in the pharmacy before being sent to the ward, where they wait until someone has time to hook it up to its recipient. Then once you’ve had your little dose, you have to wait another 15-30 minutes while they flush the line and make sure you got everything you were supposed to. Sickness is time consuming.

I still can’t believe this is happening and that we have a little boy who is fighting cancer. He’s pretty amazing. All the kids in the ward are, and so are their parents. There are no good stories really, just some that are worse than others. The sadder ones are the mum’s who are single parents and raising a few kids. I can’t imagine having to go through this by yourself, let alone ensuring you focus some energy on your other children. Add to that the added aggravation of providing an income and running a household and it’s a whole lot of stress.

We discovered today that we may have been missing some of Oliver’s pain cues and misinterpreting them for hunger. It’s not a nice thought that you may have inadvertently been allowing your child to suffer and that the only way they were able to comfort themselves was with a cuddle or a feed. Hopefully we are a bit wiser now and can keep him comfortable as he rides the rollercoaster of side effects. The problem then is overmedicating him.

The great news is he is of his steroids for a couple of weeks, so we should see some changes in his demeanour hopefully. I must admit that every day he does something different that shows he is getting better, even if it’s just being able to roll himself a bit more, or sit and play a bit longer, or reach out and grab something. This could prove to be an issue as the chemo can affect his ability to control his hand movements, but I’m pretty sure that if he gets a little behind in his motor development that it won’t take him long to catch up.

I tried to have tummy-time with him the other day and all he did was lay his face on the mat and cry. The next day I thought I’d see how he would go if I laid him on his tummy for bed. Not only did he not lay his face down and cry, he held himself up high off the bed and cried for ages. So he’s obviously got the strength and energy to do it. Now all we have to do is persevere and be creative with his playtimes.

Thanks again for joining us in this journey. We dearly love the support that we are receiving from people who are reading our blog. I hope to be able to get something that is a little more educational for you, so if you know of any blog sites that are a little more like creating your own webpage, let me know. I should probably do some research. I suspect that I can probably create my own page with a straight forward application and upload it on to my ISP server as part of the deal I have with them. I’ll put it on the list of things to do. I might just get to it.

Life

You may have guessed that yesterday was missed due to our energies being directed elsewhere, mainly towards a small boy who we love dearly. We are in the process of trying to work out what all his cries mean and what things he needs when, so we can hopefully avoid any unneccessary anguish by being ahead of the game at times. As you have learned, Oliver is extremely hungry at the moment, but he didn't feed terribly well yesterday. So overnight we decided to feed on demand, rather than having a continuous feed going through his nasogastric (NG) tube, to see if he really was that hungry through the night. This was a spectacular failure, with mum getting up every 1 - 1.5 hours to feed Oliver or set up the pump to give him an NG feed. I suspect that tonight we will go back to a continuous feed so that we can all get a decent nights sleep.
On the subject of sleep, mum has gone down for a nanna nap, and I can't hear the boy, so hopefully he's also drifted off for a bit. Nope, spoke too soon.
We have had our moments over the past couple of days. At times things have felt quite manageable, and then other times I have wanted to hide in the bedroom and pretend none of this is happening.
Let me take the time now to say a big thankyou to my mum. She has been staying in our house while we have been in hospital, and when we came back home the place was spotless. Of course, after about 30 seconds of us being home it was a disaster area again. Mum has been quietly and tirelessly picking up after us, tidying, retidying, cleaning, washing, gardening (though I'm not sure she minds the gardening), shopping, etc. Thanks mum.
Oliver is much more settled today. He has fed well with his mum, and has taken solids fairly well, all things considered, the first time in 6 weeks. He's keen to have cuddles with his dad (yay) and we have played together pretty well, though he's not much into anything. But he is happy to sit there quietly and humour me. Nanna has just arrived and has taken him for a quick walk after he had a feed, and I'm off to catch a bit of sleep while I can.

Stop This Train

"Stop this train
I wanna get off and go home again
I can't take the speed it's movin in
I know I can't
But honestly won't someone stop this train"
John Mayer - Stop This Train

We are home. We came home yesterday afternoon for a night pass, so returned again today as an in-patient and received Oliver's next lot of chemo. We always knew that coming home would be tough, but we are really at a bit of a loss. I can't really think straight, everything is a bit overwhelming, and each moment is spent thinking of what the next thing to do for our little man is. When do we start his feed, which drugs do we need to give next, what does his cry mean, is he in pain, do we need to give him a laxative. From the outside it probably doesn't seem to be a terribly big chore. From where I stand, we bear a huge responsibility for the medical care and treatment of our son, ensuring he gets the necessary medications to fight his cancer and the side effects of the various drugs he is taking. In the hospital we knew when he was due something and had a pretty good idea of what was being brought into the room at what time. It's different when it's up to you.

Today has been a bit of a crazy day for us. We have each been a little bit loony, probably knowing full well that if we didn't laugh at each other we would break down in a tearful heap. It will come, just not yet. We are pretty much trying to busy ourselves so that we don't consider the reality of our situation. This is what the next 12 months is going to be like. In and out of the hospital for treatments, administering drugs at home, keeping track of Oliver's temperature and any other signs of sickness, being aware that at any time it could all go pear shaped and we could end up back in the hospital. It's a bit stressful.

On the positive side, Oliver has quickly fallen back in to his old behaviours. In hospital it was impossible to parent him as we normally would, because it would take less than 30 seconds before someone would come and see what was wrong and if Oliver needed some drug to settle him. Although last night was a bit unsettled (for me anyway, Karli and Oma seemed to sleep through it all) he has quickly started to settle himself and go to sleep without much fuss. Tonight should be a bit of a better performance I think.

Back to the lyric's at the top. Life is a bit crazy at the moment and still a little unreal. I feel like this just isn't happening and that I am going to wake up from a bad dream. Of course, it is real, this isn't a dream, and some day soon I will come to understand what it really means for my little boy to have cancer, and that there are negative and unwanted possibilities that are, quite frankly, frightening and not worthy of considering. I haven't quite come to terms with this train ride that we have become passengers on. There are plenty of others with us, and we will probably make some good friends, but none of us really knows our final destination, but we all want to get to the same place.

The Pram Walk

Instead of doing ‘The Time Warp’ we are doing ‘The Pram Walk’. Oliver has decided that unless Mum or Dad are pushing the pram or patting him in his cot he will not sleep. As most of you know this goes completely against my parenting regime from before we came into hospital. Oliver would self settle and I never patted him to sleep, I always left the room before he fell asleep. However obviously here things are different and if we want Oliver to get any sleep, which of course we do as an overtired child thrown into the mix with steroids is a recipe for disaster, then we are locked into the time consuming art of sleep settling. So at the moment Simon is sleeping and I am on the first part of Oliver watch, starting at roughly 8pm and going until 1am. Simon then does 1am till 7am. So not only does Simon have the longer shift but at a more difficult hour, but me no complain as I don’t think I could do it the other way round.
You might well ask well how can she be writing to us now if she is supposed to be on Oliver watch, well I did the pram walk, he fell asleep, I stopped to put my jumper on and he remained asleep, so I thought brilliant, onto the computer I go as I didn’t see the point in lying down and trying to get to sleep only to be interrupted by Mr Grumpy Pants wanting me to get moving again.

It is so hard, I have to remember that it is not Olivers fault that he is so grumpy, but honestly to hear him scream is headache inducing and is most definitely testing my patience. Simon on the other hand I believe he has the patience of a saint as he will sit next to Olivers cot and pat him while he screams his head off, me I am busting to get out of the room and away from it. The difficulty also is defining what is going on for our little man, tonight we were getting desperate and gave him extra feed, pain relief, teething gel, a hot pack and contemplated anti nausea medicine. The doctors and nurses are guessing too and rely on us for a lot of Olivers cues which can sometimes feel like a highly pressured situation, when whether your child gets more or less morphine is up to you.

I feel that I should add something positive about now to make you all feel better, but honestly it is a pretty shit ride at the moment, as you can well imagine. The lighter moments consist of Simon and I trying to whisper and create our own sign language to talk in the room while Oliver sleeps. I cant even get a nice cuddle with Oliver on my shoulder at the moment, he is too restless, he will sit back in my arms and play with my face which is nice but not peaceful enough to have a cuddle. When he does smile and laugh, I look at him and think he is manic because it is usually before or after a fit of crying which more often than not now is screaming. It is like having a horror child and it is awful because I start thinking things like bring back the morphine, which he has been completely weaned off now, which increases our chances of being let out of this place.

So just like most situations you have to take the good with the bad, probably the most positive thing I can say. Thank you all for your love and support, because that is what keeps us going at this excruciatingly difficult time.

Well, I am off to make my ooh lets just say 16th cup of tea for the day to have some quiet contemplation before bed. God Bless you all and sleep tight. Love Karli

Monster

The last day or so have been interesting to say the least. We have a ravenous, moody beast on our hands, who just happens to also be teething and coming off morphine. Oliver has been on his steroids for 23 days now. He hasn’t really been in a place to complain much up until now, where he is suddenly fending for himself without a batch of drugs in the background. Some of the side effects of the steroids are mood changes, increased appetite, moon face, protruding belly, sleeplessness, nightmares, restlessness and extreme irritability. Oliver seems to be experiencing all of these. There are others but who really knows what's going on for him? He is a hungry monster. We have him on continuous feeds over night to try to get him to sleep and not be continually asking for more food. Combine that with a restless, angry, sleepless little boy who is potentially having baby type nightmares, and he doesn’t really sleep well at night, or during the day, anyway. He seems OK as long as one of us is patting his bottom or stroking his head, but wakes very soon after we stop. I have hopefully tricked him by placing a warm heat pack on his bottom – hopefully he thinks I still have my hand there. He hasn’t woken up yet so fingers crossed.

To give you some idea of what the steroids can do to a childs appetite, her are a few examples. A 5 year old who has just started treatment had 4 eggs and half a kilo of ham for breakfast the other day. One 3 year old is reported to have eaten 12 sausages and a loaf of bread over the course of a night. Another little boy was brought in and had eaten so much that they had to put him on oxygen because he couldn’t fully inflate his lungs. Initially, these stories are a bit funny. But it’s like having a badly behaved child, only it’s not them. They are possessed by the “steroid demon”. And their poor little faces blow up and their tummies stick out like massive beer bellies. Thankfully, Oliver comes off the steroids in 6 days, so within a couple of weeks he should get back to whatever might be normal at the moment. He will have them again, but only for the first 5 days of every 21 day cycle of his 15 cycle treatment.

We aren’t really sure what to expect of our little man when he does show glimpses of normal. He’s been sick for so long that I know the bar will be set pretty low, but he’s almost 9 months old. What should we expect of him? What should we be trying to get him to do? First on the list will be eating solids. He took to them pretty well when we have tried previously, but in hospital each attempt has failed miserably. We were already stressed about raising a child and ensuring we had age-appropriate activities and were giving him ample opportunities to reach the necessary milestones. Now we need to factor in cancer, chemotherapy drugs and their many side effects, the effects of the various support drugs, a little boy who may be tired and listless from just trying to get better. I know he will catch up, that this is very early on in his life and he will soon be mixing it with the other bad boys in pre-school before I know it. But there could be some serious side effects to his nerves, brain, muscles, heart and other organs and we want to pick them up early, not just to overlook them and wait for them to go away with time. Waiting is what kept us out of the hospital in the first place.

As we were waiting for his last (yay) lumbar puncture today, I was reading through his file – which has become considerably large. As I read the notes written down from our last trip to the emergency department, I read that the doctor had written that he had reassured us there was no cancer. Phooey to that. I also noticed that the person who looked at Oliver’s blood and cleared him of cancer at the time was the head of the ward we are now on. I know he was very difficult to diagnose, and that’s all that keeps me from getting angry. I’m just glad we (Karli) kept pushing. Otherwise, PMH weren’t planning on following us up for another 2-3 weeks. I don’t want to think what state our baby would be in if we were still waiting at home, trying to feed him pureed mince.

We’re here now, and our little man will get better, and we will kiss him and cuddle him more than he wants, because it’s all we can do. And when he gets better, look out world.

A Mother's Heart

Hi there, I thought it was time that you heard from me. I have been wanting to write for days actually but have been too exhausted to. I am currently snacking on tea & toast and my son is finally asleep after a long battle from this afternoon into tonight. We finally caught on (the nurses and I) that it was a hunger issue and have since bumped his feeds up and he has settled. His Dad is currently trying to get some shut eye as he only slept 1 hour last night, so we will swap over at midnight and Simon will sleep in the room with Oliver and I will sleep in the single bed we have in a separate room, that we call ‘The Sleeper’. Have we told you about that? We are very blessed to have that – most families can’t have both parents staying and a lot of parents end up sleeping in recliners next to their children’s beds, but as I am breastfeeding I get priority and we have a small room with a bed and a wardrobe, very handy for storing all our crap, for sleeping and for hiding from the world, quite often I get in there, shut the door and breathe a sigh of relief that I no longer have to deal with anyone.

There are so many complexities that come with living in a hospital, from lack of privacy – quite often Simon and I get caught out by one of the nursing staff for having a cuddle on the bed in Oliver’s room. No space to ourselves, even walking to the toilet and back you are bound to bump into somebody, whether it be another parent or a staff member and although often this can be encouraging, sometimes it can be pretty damn annoying and when someone asks me how I am, sometimes I feel like yelling “How do you think I am, my child has cancer” (often with a few expletives thrown in)

So this gives you a bit of a look into some of the frustrations of being here. A positive has been the sharing we have done with other parents, Simon had a beer with one of the other Dads tonight which was great and one of the other Mums popped in twice today to introduce us to her 2 kids.

Now to Oliver, an update on our precious little bundle. I say that and have to chuckle to myself as currently I would not describe him like that, the last 2 days he has been like an angry monster or a raging lion – “It’s the drugs!” Our dear sweet Oliver has turned into a screaming machine. The joys of breastfeeding have been overshadowed today by the fact that he is just so hungry from the steroids that I simply cannot keep up. Not only that but at times I have been faced with not being able to comfort my son which I have found very difficult. He is having trouble sleeping and being settled and will cry in our arms – which to me I find devastating. Whereas before hospital a Mummy cuddle will fix things, in hospital it doesn’t always. Not only that but I have no idea what this screaming monster wants or needs and he cant tell me, so along with the nurses and doctors there is a lot of guess work going on.

He is getting better physically though, plenty of poos we are pleased to report, in fact the sheets were changed twice today as a result of wees & poos, his mouth is healing nicely and so are other abrasions on his body. However when the going gets good, the doctors here decide its time for more chemo and then everything goes downhill again. So tomorrow Oliver has a lumbar puncture in which they insert a chemo drug into his cerebrospinal fluid. He will be under a general anaesthetic, I hated watching them the first time they put him under, so I won’t be doing that again. We are anxious about this as last time he was very unsettled after the lumbar puncture and we think was suffering from a headache – that is a side effect.

So basically, we are on this frustrating ride where things start to improve then he gets more chemo and things turn to pot again!

I should finish up as I imagine I am writing much more than Simon does and probably more longwinded too, but like you I have enjoyed reading our blog, with Simons reflections on our journey. Thank you from me for your love, prayers and support and I will be in touch again soon.

Love Karls