Little Giggles

It's not much, but it's a start.

Restlessness & Reading

Restless nights make for good opportunities to do some reading. Oliver has had af ew of these and last night was no exception. It doesn’t help having a nurse come in every hour. Like I said yesterday – what do they think this is? A hospital!

One of my ways to cope has been to try to get my hands on as much information about Oliver’s cancer as I can. Admittedly this has been a fairly small amount, but I am slowly accumulating things. If you think I’d be interested in something please feel free to share it.
I have read a couple of different articles from some US medical sites (National Cancer Institute, Boston Children’s Hospital, virtualcancercentre.com) about anaplastic large cell lymphoma (ALCL). This has been fairly general in nature, and often focussed more on adults. I have looked at the website for Lymphoma Australia. I have checked out a couple of websites that have given me access to drug information that I am yet to read. I have read a chapter out of a pediatric oncology textbook. I have been given a copy of a journal article about two cases of unusual manifestation of pediatric ALCL. This was interesting, and though much (all) of the genetic discussion was complete gobbledigook, I was able to understand enough to work out that Oliver would appear to be only 1 in 4 children in the world who has presented in such a way. It’s no wonder that it took them a while to work out what was actually wrong. I am also reading a book about childhood leukemia that was given to me by the hospital. Although specifically written for leukemia, much of it is about cancer in general, and because lymphoma is a very similar disease to leukemia, in that they are both blood cancers, even some of the leukemia specific stuff works for us aswell. If you are interested I can let you know the title. It’s probably the must useful thing I have read. And of course we have talked to nurses, doctors and parents. What have I learnt so far?

Cancer in children is different to cancer in adults.
Blood cancers, which are ‘liquid’, behave differently to cancers that are tumours.
A lot of information on cancer is written about adults.
Oliver has about a 70% chance of being given a clean bill of health in 5 years, the time period they wait for in order to be certain the cancer is gone.
Nothing that we, or anyone else, did caused Oliver’s cancer. It was a genetic mutation, possibly the result of his bronchiolitis just after easter.
Genetically speaking, any more of our children aren’t any more likely to develop this cancer than the child in the next room in the hospital. As they say, shit happens. Unfortunately, it happened to my little boy.
Chemotherapy has many side effects.
Cancer affects all of those connected to us. Some for better, some for worse. Help will come from unexpected places, while some who we expect it from will disappear form our lives.
This is going to be a long journey, even though Oliver’s treatment protocol is pretty tame compared to some of the one’s children are going through. You could say Oliver is fairly ‘lucky'.

Thankyou for reading my ramblings. Thankyou for your comments. Your support means more than you could imagine.

Looking Up

Normally I would write at about 3 in the morning after I’ve changed the boy and put him down, but he let me sleep until 8ish this morning. In fact it was the nurses who woke me up. What do they think this is? A hospital!

The day has been good. The best news is that he had his first proper breastfeed for about 8 days. It was so good to watch him, and he was so settled after. Surprisingly, Karli didn’t shed a tear – I came close. I think she was just so relieved for him to latch on and keep going rather than pull off like he has done for the past few attempts. The funny thing is we had just had a bit of an angry moment with the nurses over storage and use of Karli’s expressed breast milk (that’s EBM for all you who like TLA’s). It’s not an issue at the moment I suppose, but it may become one again, so better to sort it out now. Oliver’s morphine keeps coming down, and he is off his ketamine (yay).

We have been a little bit concerned about his level of anxiety. The rule is that he gets 3 taps on his foot before he receives any attention that will cause some pain. Unfortunately this rule came in fairly late and Oliver had already received a number of painful treatments. It seems that he has attached painful treatments with having his blankets removed. This means that he seems to get worked up whenever he is uncovered. At the moment he doesn’t receive too many painful things, but he is getting agitated whenever we try to change him, or go to pick him up, or just lay him down. This has become a little worse as the morphine wears off and he becomes more aware of his surroundings. Tomorrow we will see Ranita, the OT, and possibly Lousie, the music therapist, who will help us to put into place some things to help him identify ‘safe’ times.

Oliver also seems to be losing more hair every day. It isn’t coming out in clumps, but there is more and more hair left where his little head has been laying. It won’t be long before his hair, eyebrows and eyelashes are all gone. Dad had a sympathy head shave today. It’s not all gone, but I will complete the job when all of Oliver’s starts to completely disappear. There is a potential positive to this side effect. If the chemo is affecting his hair, that means it should be affecting his cancer too. That’s probably a good way to look at it.

We are starting to go a little stir crazy. We are still hoping to go home on the weekend. There’s no place like home.

Back to Normal?!

Another uneventful day has gone by. Oliver’s body has started to function like a normal little boy and we are slowly increasing his feeds (and calories) and decreasing his pain medication. He should come off the ketamine today, and possibly even the morphine. Of course, this gives us more time to think. We went for a drive today and it was enough to give Karli space to consider the plight of her little boy. I suspect that once we get home it could be messy.

While we were out we witnessed something that can only be described as disgusting and I have been trying to figure out what to do with it ever since. Since it was raining at the time, there was a fair bit of rain on the road. As we watched for traffic coming down the road, a white work van deliberately swerved into a puddle on the road, completely drenching a small boy, his mum and his grandmother as they were trying to cross the road to get to the bus stop. I couldn’t believe it. And the young guy driving thought it was hilarious because he was laughing with his mate as they drove past us. We took down the number plate and I had every intention of writing to the West Australian and the two local papers in Claremont. But I’m not sure what I might be getting myself into legally. And I keep wondering if I should have done something else, like pulled out in front of him and made him stop – except I would have wanted to smack the guy. Or follow him, then what? How do you pull people up for treating others so badly in a world where it seems that that sort of behaviour is lauded. I wouldn’t be surprised if he’d seen it on something like Jackass, or Punk’d, or something like that – a practical joke. Except practical jokes can only be done on friends. When they are done to complete strangers they aren’t funny. Any ideas?
See what happens when we have some time to think of other things. Well Oliver had another part of his chemo yesterday, the bit he had postponed on Friday because of his bowel movements (or lack thereof).

Thankyou to everyone who has posted comments. It’s nice to know we are helping keep you informed, and lovely to have such support so regularly. Just a short one this morning, but the day is young. Who knows what curveballs our little fighter might send our way.

Relief

When we first brought Oliver home, Karli and I found that many of our conversations revolved around the contents of Oliver’s nappies. Never before had poo and wee featured so prominently in our vocabularies. The last few days have been the same. Oliver has been holding out for four days and had countless numbers of laxative doses given to him. Obviously, someone has a stomach of iron. This has meant that we have been feeding him minimal amounts through his nasogastric tube because his tummy has been too full, especially once some of his medications are introduced. He has also missed his second dose of vincristine (one of his chemo drugs) because it constipates him. We started to turn down his morphine yesterday, which is now at a dose 20% lower than it’s highest, and his ketamine which is 33% lower. This morning we had a very large poo J. We have had him in nappies that are only just his size because the others didn’t fit around his tummy well. This was fortunate because there was enough space to catch everything. Now all we need is for his mouth to get better so he can start breastfeeding again.

So he will get a second dose of vincristine today, and depending on how it all goes, I’m hoping we may get home by the weekend. I’m not getting too excited about it though. Who knows what could happen between now and then to keep us here. Secretly, I think they just love seeing our smiling faces – and Oliver is so cute.

We have been getting out more. I went in to the gym yesterday to do a workout while it was closed and also left some messages of thanks for everyone there. Oliver, Karli and I have been truly blessed by the generosity of everyone at the gym. Thankyou to you all. We then left our little boy in the hands of the staff and went to Dome in Subiaco for a coffee and just to have a chat in normal surrounds. It was a bit bizarre. It’s the first time we have been out together since all of this started. In fact it’s the first time we’ve been out without Oliver for a few months. With him being sick we just couldn’t leave him with anyone because he was so clingy with his mum. So we drank a coffee, chatted, and bought Oliver a “Twinkle, Twinkle, Little Star” book with lights and music and 5 verses to his favourite nursery rhyme. We have only just learnt the first 3 verses. Did you know that there are 5 verses to “Twinkle, Twinkle, Little Star”? Not sure how original they are, but they work.

It is still very surreal and hectic in here at the hospital. I’m not sure what to expect when we get home. We’ll need to get things to beep sporadically in Oliver’s room, and an automatic door opener to open and shut his door just as sporadically, just to simulate the disturbances that happen here, that he has slept through beautifully. Not sure how he will go with a quiet house and room.

But that could be a long way off. For now we will enjoy our little sleeping boy who poo’s, and hopefully today the pain relief will wear off enough that he will be able to play with some of his toys and listen to a story. Maybe we’ll get a smile and a giggle. We hope so. We both watched this video on my phone last night. We hope this little boy comes back soon.

Better Days

Oliver had a much better day on Saturday. He doesn’t seem to be in as much pain, his mouth has stopped bleeding, we’ve been able to cut down on the number of “bolus’s” (bolii?) that he has been getting above his background morphine, and he has been much more settled. We are still waiting for him to fill one of his nappies. He’s been making the right noises, just no movement at the station just yet. Hopefully today. He’s been holding out for four days now. 4 doses of laxatives hasn’t seemed to move him. Hopefully everything will start to pick up as his neutrophils go up and his morphine requirements go down. We’ll be so excited when he does, even though we’ll probably need to hose the place down. He hasn’t been ‘eating’ (through his little tube) that much though anyway, so maybe his body’s just using it all up. We’ll probably end up with a nappy full of slimy mucus.

I got out yesterday, had a coffee and a chat with a couple of people, and even indulged in some retail therapy (but everything was for Karli – almost everything). As I see people grieving for us, I can’t help but feel a little hard and callous. Intellectually I know what is going on, but emotionally we just haven’t had the time and space to process it all. Here in the hospital we just have to do what we need to do. We are still in shock and whilst we occasionally get a small glimpse at the full reality, it is usually short lived – they don’t like people lying in the foetal position sobbing their hearts out, it’s a safety risk J (not really, but you just don’t know who’s going to walk in and want to have a real conversation with you).

We are picking up a lot of cancer jargon though – I suspect it is the way for many parents with seriously ill children. In order to be able to understand the medical staff you need to be able to talk the talk. So as I’ll probably use some of that jargon, I’ll give you a run down on what is important for us.

The most important thing for us is Oliver’s blood work. Each day they take some blood and check the levels of all sorts of stuff and see if there are any nasties they need to be concerned about – they have to be concerned about all the nasties. We are kept up to date with four specific things that will affect what we do and see with Oliver.
WBC – White Blood Cells – these are a major part of out bodies immune response, destroying foreign substances in the body like viruses, bacteria and fungi. They are made in the bone marrow. Because these are rapidly growing cells, the chemotherapy affects their production. They should fall in to a range between 6.00-16. Oliver’s are currently at 1.6.
Neutrophils – these are a type of WBC that attack foreign bacteria. When these are low Oliver is ‘neutropenic’ and highly susceptible to any little germ. At these times I suspect we will have biohazard tape around our house to keep people away. If you are crook and want to visit, please make sure Oliver isn’t neutropenic, or better still wait until you are better. The range for neutrophils is 3.9-10.2. Oliver is currently neutropenic at 0.03.
Hb – Haemoglobin – this is a protein in your blood that picks up oxygen and carries it to where it needs to go. It is what helps make your blood bright red, and when you are low you are anaemic. It’s basically a measure of your red blood cells (RBC). When Oliver is low he will be tired, weak, cranky, and may get headaches. The normal range is 117-149. Oliver is currently at 117.
Platelets – these are what help your blood to clot. Low platelets mean you can bleed from your smaller blood vessels easily, such as in your nose and gums, and that you will bleed excessively even from a small cut. They also mean you can bruise easily, and can get petichae – small red dots on your skin. The normal range is 180-440. Oliver is currently at 83.

Even though his levels are all low, they have actually risen from the day before, which we hope means he will be steadily improving over the next few days. Here endeth the lesson.

Angry Days

They say there are stages of grief and that anger is one of them. I think I hit it today. How do I understand and comprehend all that is happening without wanting to punch walls and yell and scream and be violent towards something or someone?

For the most part Oliver is completely out to it. We can't interact much with him other than to give him cuddles and to pat him and rub his head as he sleeps. Fortunately that seems to bring him some peace. As he sleeps in his drug induced haze he cries out in pain - how? How can he still be feeling pain when he's already on more pain medication than some of the specialists seem comfortable with? I know it's not that easy, and I know that it's because he's all clogged up, but if that's the case, why can't they unclog him? If they can fight his cancer, surely they have something that can relieve him of his constipation quickly and effectively. If not for the medications he is receiving he probably wouldn't be in this pain. If they can put him there, can't they get him out. Again, I know it's not that easy, and they aren't the ones who have required him to need this treatment in the first place. And so my anger turns again and I ask "Why?"

Why does our beautiful little boy have to endure this pain and discomfort? Why has he been chosen to have cancer after less than 12 months of life? And not only him, but what of the other children on the ward. Why Ava, who is only 7 weeks old? Why Callum, who began his treatment when he was about 5 months old? Why Ryan, who at 16 has been associated with this ward since he was diagnosed with a completely different disease when he was only 2 weeks old? And the ward is full. Justice. Mercy. Love. Compassion. These are hardly words that seem to fit when considering these questions of why. They are only found in the people who surround us in this sad and grief filled place. At best I can only comprehend a God who is indifferent, disinterested in the plight of the children and their families who inhabit this ward, and this, and other, hospitals.

I know that some will say God is here. He is the compassion, mercy, and love that exists here. But I can't help but feel that if you let a train wreck happen, then you have some moral obligation to help fix it up. Maybe if you can allow a train wreck to happen, moral obligations don't rank highly for you anyway.

Oliver is not doing well at the moment. He seems to be continuosly hit by waves of pain which we think is discomfort from his tummy. Karli and I are taking it in turns to sleep in the room with him while the other sleeps elsewhere. But I can't sleep in here. If you could here him breath you would understand what I mean. Imagine the sound you make as you slurp up the last of a thickshake. This is what Oliver sounds like with every breath. The amount of mucus in the back of his throat won't let him take a clean breath. With each breath I sit and wait for the next one, hoping that he won't stop. I lay down to sleep but I can't relax. It makes me feel sick to listen to him and to sit helplessly by and not be able to fix him and make him better. I go over and pat his tummy and rock him and gently stroke his head. I wipe away the mucus that is draining from his mouth. I want to hold him, to pick him up and take him away and tell him it's all going to be OK starting now. No more pain and sickness. But the five different lines he has plugged in to him won't let me go more than a metre. I know he will get better. That this is a dip, one of the many, on our new rollercoaster ride of life. One of the deep valleys in this mountain climbing expedition we have been volunteered for. But I can't see that there will be many peaks to enjoy over the next year or so, and I can only see that there will be many valleys, and I pray that they don't get any darker and deeper.

Superheroes

There comes a day in every child's life that they realise their dad isn't a superhero. It has happened far too soon for Oliver. As he grows up over the next 12 months he will become aware that there are things that hurt that dad can't save him from, and things that dad will let happen to him, and maybe even help do to him. I was looking forward to being a superhero. To be invincible in my little boys eyes. To be the strongest man in the world. For Oliver he will always know the reality.

My dad is a superhero. There's nothing he can't do around the house. If I ever need anything done around the house harder than changing a light globe then I'll call my dad. Sure I'll try to help out, but I'll always be the sidekick. If something needs fixing or building then there's no better man for the job than my dad. My father-in-law is a superhero. No-one else is as wise when it comes to finances and no-one has taught me the simple rules of handling money better. He also has some superpowers in the household repair arena.

Four times a day Oliver's dad takes cotton swabs soaked in antiseptic mouthwash, puts them in his mouth, and washes the inside of his already sore mouth. Oliver's dad sits by patting him on the side as he breathes through a thickshake of mucus, unable to do anything remotely constructive. Oliver's dad hands him over to be put to sleep at the hands of a gang of adults all dressed in weird clothes. Oliver's dad lets him be poked and prodded and squeezed and man-handled at all hours of the day and night by smiling assassins who come across all nice and sweet as the inject various concoction's into his veins. Oliver's dad is more super-villain than superhero.

I hear the other kids in the ward. They cry and scream as the are given their medications. They know that they are in for more pain and discomfort, and that there will be more in a few days time. They yell out, protesting in vain against the chemicals they have to take, the mouth washing they have to do. They vomit and lose their hair. And their parents sit by and watch, leaving only to head to the pan room carrying their child's waste to be tested to see if maybe a different chemical needs to be used. Last week a small child cried out to their parents, begging them to stop killing her. I wonder what is happening for Oliver, if he ever thinks that. Even though he can't tell us where he hurts, he also can't tell us how much we are causing the pain.

Sometimes I think that we have it better than parents with older kids. Oliver probably won't remember any of this in a few years time. And he can't protest, and yell and scream and chuck tantrums. He doesn't really have any brighter days before all this began that he can probably remember and compare it all too. But then, he can't tell us where it hurts. How it feels. What he would like. What would make him feel better. The truth is no-one here has it any better than anyone else. Each of us is struggling with the reality that our child's innocence has been rudely stripped away and that they are now exposed to the stark reality that there are things in life that no-one can save them from - not even their dad.

Life's Downs and Ups

On behalf of my little boy, life sucks. It's not enough to have cancer and require chemotherapy, but the therapy itself has side effects that I wouldn't wish on my worst enemies. I can't imagine what it must feel like for my little boy when it hurts too much to be able to breastfeed. When the one place where you feel most secure and safe becomes a place of pain. When you drool all over everything because you don't want to have to swallow. When you have to have a shot of morphine so that your mum and dad can do your mouth care routine to try to improve things. When you continually swap from finger to finger, looking quizzically at your hand, wondering why it hurts so much to suck your finger.

Oliver's mucusitis is so bad at the moment that he is on morphine and ketamine. His morphine has steadily gone up to the point where the pain team thought it wise to give him something else. His temperature has also been high so he is also on a couple of antibiotics. At the moment he is neutropenic, meaning he has no neutrophils (types of white blood cells) to fight off nasties. They will come back, but this neutropenic phase will be part of his life as he goes through his chemo. This will place severe restrictions on some of our activities at times.

We had a rough night last night. I got about an hours sleep. The pain and discomfort seemed to be steadily increasing with nothing really seeming to work. Eventually we resorted to his pram and he settled beautifully. Not sure why. Maybe because he was fairly snug in there and laying on his side. We've got him on his side to sleep now aswell so that all the saliva can drain from his mouth and not pool in the back of his throat giving us all a scare when he chokes on it. He did decide to mount a protest whilst in his pram though. I peered through to check on him, only to find that he had decided to pull his nasogastric tube back up out of his nose. It was a fairly short lived victory though because a new one was soon inserted, much to everyone's dismay.

We had a couple of vomits through the morning, with his morphine being steadily increased. This seemed to have an effect with him calming down over the day, though Dad wasn't around for much of it as he was catching up on some sleep, and also went to get some paperwork from work.

Life sucks. Yet life also lifts you into the clouds. Maybe it's more that situations can suck, but people can remind you of all that is great in life. I am taking time off from work. Whilst it was an easy decision to make it does create some difficulties as I am self employed. On going in to the gym I was presented with an extremely generous gift from the clients and staff at RPT. So to the members and staff at RPT I can only say one word - Thankyou. Words fail me. The generosity of the gift, and the concern for my family that it conveys, are staggering.

And so I sit and write with one hand, while the other gently pats my little boy on the back. He is virtually lying in the coma position so that saliva and mucus can drain from his mouth. While Oliver, Karli and I go through this crap experience that leaves us sobbing in each others arms when we aren't numb from it all, we know we are surrounded be a great and varied group of people who show their love and care for us in whatever way they can. The silver-lining is wonderful, but I would prefer for the cloud to not be so black.

Thankyou

I haven't yet been able to thank the many people who have helped us out so much on our journey so far. We have been inundated with offers of help, love and support and we are so grateful, blessed and humbled by the response people have given us. We are good for the time being, but when we get home it may be a different story. We will keep you posted as to if you could help us. But, to all those who have helped so far a big, huge thankyou. I hesitate to name people in fear I will forget someone - it's inevitable - but as I said, we have been blown away by people who have been here for us. Thank you Michael & Wendy for the great meals you made for me (I hope your little one's are healthy and happy) and the beautiful card and balloons - they are still inflated; thankyou also to Holly and Phil for the food they prepared, and to Mr & Mrs V (Hank & Helen) for dropping it off and letting us see there lovely faces - it had been too long; thankyou to our parents for their gifts and food, and hugs and chats, and calls and messages, and to Greg for the internet access; thankyou to Narelle for the food for Karli and the flowers and balloons and constant messages; thankyou to my clients at the gym for their understanding and support; thankyou to Mike & mandy for the Eagles bear and dropping in after the game - sorry about your trip to Walpole; thankyou to Jarrad and Aimee for flying back from the UK to support us - you didn't have to but it means a lot; thankyou to Sue for the meals too, and we will be calling on your hairdressing skills before our little boy loses any; thanks to Charmaine for dropping in and being a slightly removed, but more than understanding ear and extremely useful source of information and inspiration; thankyou Susie for taking karli out for coffee and for the gifts for us all; thankyou Trent & Michelle, for being here when we needed you, and leaving when we didn't have time or energy; to Burke, Zoe, Kaz, Susie, AJ, Travis, Arena, Matt, Tif, Pez and Alex, thanks for looking after my clients and the gym; thankyou Mel for the gifts and our little boy's special quilt; thankyou to the individuals and churches who are praying for us; there are others, and I will remember.

A big thankyou to the staff here at the hospital. The consultants, doctors, fantastic nurses, administration staff, cleaning staff, kitchen staff, orderlies, surgeons, anaesthetists, post-operative care nurses, ambo's, radiologists, phlebotomist's, immunologists, haemotologists, pharmacists, and countless others who have been involved in Oliver's, and our, care. And also to Dr Lindsay Adams, the paediatrician who so quickly got Oliver into hospital.

To anyone I have forgotten, Thankyou.

Changing Plans

No I didn't take the weekend off. I started this blog last night but things happen. I thought I might be able to relax at home and blog at a leisurely pace yesterday. But we are still at the hospital, probably for another few days. We were told Saturday that we would be able to head off. In fact, we could have packed up and headed home Saturday but we decided to hang around one more night. Before we got the all clear today, the doctor had a look at Oliver's mouth and in her own words 'it was a mess'. We needed to stay in for a few more days until it got better and so that the boy, and mum and dad, could get some sleep. Our little man can't take a trick.

Chemotherapy attacks fast growing cells such as cancer cells - brilliant. Unfortunately, there are other fast growing cells in our bodies that also suffer. For instance, your hair, so Oliver will soon lose it all. Your bone marrow, so Oliver will experience neutropenic phases where his white blood cell count will get so low - sometimes to zero - that he will be unable to go out anywhere in case he gets something that his body just can't fight. The mucosa that line the gastrointestinal tract - so from his little mouth down through to his tummy and further these will all become inflamed and ulcerated, making it painful to swallow mummy's breastmilk, painful to suck his little fingers, and makes him feel nauseas. He is on a slow morphine drip to keep the pain at bay and is being fed through a nasogastric tube down his nose into his tummy. So mum is expressing as much as she can and he is also on a breastmilk substitute. He slept OK last night, thanks to the morphine and a continuous flow of food into his tummy with a 'bolus' every couple of hours to fill him right up.


So 2 weeks ago, Monday 7th July, we were back in the hospital. Attempts were made to get blood from him but this was impossible due to our little man's chubbiness not allowing them to find a vein. I left Karli with our fiercely objectionable little man and had to head to work. I was quickly back after a call from Karli that Oliver was about to have another general anaesthetic to have 3 lymph nodes removed to be biopsied. Although fairly straight forward, we were a little concerned as he had stopped breathing and turned blue during his first GA. He also had his blood removed to be tested whilst he was under anaesthetic and had a drip put in which would be a constant appendage for the next few days.

Tuesday saw Oliver injected with radioactive dye for a bone scan to see if there were other areas in his skeleton affected by the cancer, as they had already seen some dodgy spots on his shoulder blades during his CT scan. As a result, for the next 24 hours we were changing him with gloves and placing his nappies in hazardous materials bags. He also had more blood removed for other tests. That afternoon we had a meeting with the consultant that our social worker and Oncological Liaison Officer sat in on. It was starting to get serious. There were 3 conditions that they were looking at, none of them good.

Wednesday we spent in the room waiting to see the consultant to get some results. At 4.30 we saw her and there was still no news. I think I recall them saying that at least one of the possible culprits had been ruled out, but we were still playing a waiting game.

Thursday was more waiting to see the consultant. They had results. Oliver had anaplastic large cell lymphoma. I still haven't found the space to be able to sit down and research anything about it yet, but we were given a bit of reading material. In my heart I had hoped that they were going to come in and tell us he had a weird reaction to the flu virus, that he was going home tomorrow and would be fine. No such luck. I had spent the week worrying that we were taking up a bed in the ward unnecessarily, using up nurses time and ward resources. But suddenly, we were in the only place he should be.

Friday was a blur. Heart ECG to make sure it was OK and to get a 'before' picture as it could be affected by his chemo. Then off to x-ray to take a picture of his chest for the surgeons who would work on him later that evening. Into the ambulance to go to Charlie's (an adult hospital) where they were cranking up their old PET scanner to get a picture of the active growth areas in Oliver's body. More radioactive dye injected. 3 hours later we were back at PMH to prepare him for surgery to have an infuser port inserted. A little button would sit under his skin attached to his rib cage with a catheter flowing pretty much into his heart. It would mean a whole lot less pain and agony to get blood and give anything intravenously. Another GA and at the same time they would do a lumbar puncture to check the fluid around his brain and spinal cord and to start his chemo.

The surgeon expected a routine 1-1.5 hour procedure. As the hours stretched on Karli and I became increasingly concerned and stressed. What was happening to our little boy on the operating table? The surgeon came out and saw us to give us an update early on in the pice, but as staff left for the evening we sat in the corridor trying not to think the worst. After 4 hours the surgeon came out and told us what was happening. The surgery was over, the port was in, but they did have to place it on the left hand side and it didn't run perfectly into the spot they would normally like it to. but it was there and that's all that mattered to us. We stopped back in at x-ray on our way back to the ward so they could double check the placement of the catheter. Back on the ward Oliver finished off his first dose of chemo.

We spent Saturday getting our heads around his chemotherapy treatment protocol and looking after our little family that was suddenly going through some daunting changes.

The Days Just Fly By

We have been in hospital for almost 2 weeks now. We do have some positive news though - there is a slight chance we may head home on Sunday. We are starting to be given all of the necessary information and our collection of drugs has been packaged up, so hopefully Sunday will be the day. We won't get our hopes up too high though.

Oliver had a second lumbar puncture today. He hardly slept and didn't feed real well after it, so we suspect it gave him a bit of a headache. It is so hard to know what is happening inside our little boy. Is he in pain, does his head hurt, is he feeling nauseas, is he uncomfortable, is he just being a little boy, is he tired, is he experiencing mood swings from the drugs. The next few weeks, maybe even the months, are going to be a relearning of his cues.

We are tired today. Even though we have been getting some sleep, I think the constant presence of nurses, doctors, other people, each other, and the need to be at Oliver's side all the time is starting to wear us down a little. Hopefully he will sleep well tonight and mum will get a good nights sleep, though she will need to get up to feed him. With any luck the nurses won't disturb him too much tonight either.

I still need to recount our first week in hospital, but that will have to wait. For now I will try to sleep as I foresee a restless night ahead.

Small Triumphs

After 3 days inside the headbox, Oliver came out this evening and handled it beautifully. Although his fluids are being closely monitored, the consultant let him have one breastfeed, which both he and his mum took full advantage of. After a lengthy cuddle with Mum and Dad he was dressed in a little sleep suit for the first time in a long while, before he was laid down into bed where he wrestled with his little bear, Bruce. Then, much to Mum's joy, he filled a nappy - the first time he had "opened his bowels" (hospital jargon) for 3 days aswell. It's strange what things you celebrate, but tonight we will all go to bed happy and contented.

Oliver has made so many improvements in the past few days that I can't help but be filled with optimism about his treatment - though I haven't dared to consider that there is an alternative to success. He has lost almost 1.5kg in the last couple of days. That may sound bad, but it has all been fluid that has been leaking out of his blood vessels and into his tissues. His stomach girth has come down almost 5cm and when we held him, we could cuddle him close and not have to be careful of pressing on his tummy. His blood pressure is returning to normal, and his pulse and oxygen saturation are also normal. The doctors are happy, the nursing staff are happy, and we are happy. Our little boy is also happy. We haven't had a smile for a while, but it will come.

I had intended on filling you in on the last week and a half, but that can be tomorrow's tale - at least at this stage. Who knows what the night and next day will bring in this journey through which my baby boy must carry most of the burden.

A Quiet Day

Today has been much less worrisome than the previous days. Oliver is still under the headbox, but the concentration of oxygen has slowly been reduced, while his blood oxygen saturation levels have remained high. He had some of the doctors guessing with his low heart rate, but they think they have an explanation. He looks fine, and has lost 1kg of fluid over the last 2 days, so we are happy to see our boy changing back to his normal self again. Mind you, his looking "healthy" is what postponed his diagnosis in the first place. Hopefully he will be out of the headbox tomorrow, though probably back on to nasal prongs. But we will atleast be able to cuddle him. We haven't had a cuddle for 2 days and I think we are all missing them. I'm sure mum will be keen to get back to breastfeeding and stop expressing.

Let me fill you in on what brought us to this point.

Just after Easter, Oliver got a little cold. This didn't appear to be anything to worry about. I think I remember us going to the doctor who confirmed our suspicions of a small cold. Combine that with the first two little teeth coming through his bottom gums and it was all a sound explanation for his cough, sniffles, ear rubbing, grizzling and breathing sounds.

16th April saw us up at the Princess Margeret Hospital for Children (PMH) emergency department after Oliver coughed up some brown gunk that looked a little like blood. It wasn't, but he was diagnosed with bronchiolitis. Nothing to do but ride it out.

A fairly enlarged lymph node behind his right ear took us to a local GP who told us it was just enlarged due to the cold. It would go down. A second lump around the back of his head had me heading for my anatomy books and our baby care books. Yes it isn't uncommon for children to get enlarged nodes, and for them to stay around and come and go, and yes we have some around the back of our skull. Having calmed our fears we were off to see our own GP the next week. She agreed with the other doctor and prescribed us antibiotics to try to reduce the size of the lymph nodes.

We went back for a check up the next week and although the node under his ear hadn't changed significantly, the one on the back of his skull had gone. The antibiotics were working. We stayed on them, with increasing reluctance, for five weeks. Each week we would head in for a check up. More nodes became enlarged in his groin. These too came and went and came back again, along with the one on the back of his skull.

During this time Oliver slowly became increasingly more clingy with his mum and occasionally his dad. He became more and more lethargic and disinterested in playing, especially by himself. He stopped rolling and would cry whenever he was placed on his tummy. Play became a very quiet and mum-and-dad initiated activity. Whereas he previously loved to play on his back on his play mat, wrestle his teddies, and explore his exersaucer, these soon became activities that induced crying. Sitting on his bottom with mum or dad was all that he would do.

Our third last visit to our GP saw a referral for an ultrasound. We had another appointment within a week and she ordered some blood tests from PMH so that she would have both those and the ultrasound by the time we came back on Friday. Karli and Oliver went and had the ultrasound on Thursday and after waiting around for a couple of hours and being stalled by the staff, she was told that the report was being sent straight to our GP and that she should go in to see them asap. This was a little unsettling. After a worried evening we headed back to the GP who told us that she didn't have all the blood tests back, but to head to PMH for some tests and to pack a bag as we would probably be admitted for a few nights. A finger prick test at PMH and a few hours waiting resulted in us being told that Oliver had low iron and to take him home and get him back on his solids, and into mince within the week.

So home we went. Karli pureed up a storm and we started feeding our little boy solids again. We had done previously but stopped after he became so miserable with it. He took to it OK, but soon became just as miserable. An exasperated call to Health Direct resulted in them telling Karli that she should just breastfeed him while he had his cold as this was really all he wanted while he was sick. A call to the Parenting Helpline gave the same story.

With an increasingly miserable little boy we decided to visit the paediatrician on Wednesday 1st July and get his take on the situation. After chasing down the ultrasound report and the blood test results, he rang Dr Angela Alessandri at PMH and asked if she would take a look at Oliver. We came in the next day and sat down with the lovely Dr Angela, who examined our little boy, asked us questions, and had some blood tests done. She sent us home and asked us to come back at 1pm on Friday to have another ultrasound done. That evening we received a call from Dr Angela asking us to come in at 9am with some clothes because she wanted to do a bone marrow aspiration and biopsy as well as a CT scan. She suspected that Oliver had a tumour that may be in his bone marrow. Our world was beginning to be turned upside down.

Friday saw us admitted to Ward 3B - Oncology. We met Iris, one of the social workers, who gave us a Redkite support bag and we prepared ourselves for what was to come for our little man. 2.00pm saw us sitting in a waiting room outside the CT room, staring blankly at the wall as we cuddled our little boy. It was all far too unbelievable. Karli handed our little boy over to the nurses and was allowed to watch as they gently placed our little boy under the first of 3 general anaesthetics he was to have within 8 days. We waited, and sent messages to friends, and cried, and paced, until our little boy was out and we were off back down to the ward. Fortunately we had been moved into a smaller and more private room. As we settled in for the evening it was so very unreal. Saturday saw our little boy receive a blood transfusion and, after being given the all clear, we headed home to return to the hospital on Monday at 8.30am. Our ride had just begun, and it would prove to be a long first leg.

The Air We Breathe

Oliver lies under a perspex head box so the air can be saturated with oxygen. He is being fed mum's breastmilk from a bag by a nasogastric tube, with his oxygen saturation and heart rate being monitored by a separate machine, and three drip lines feeding in to his recently implanted infuser port. Yesterday was completely different, and no doubt tomorrow will be aswell. It's as if our little boy's body is falling apart with everything affecting everything else. I have always been amazed at the fine balance the body maintains, and how a minor change can make us sick. Though still amazed by the body's fine balance, when it's my 8 month old son, and he is majorly out of whack in various areas, my amazement quickly turns to fear, anger, sadness and a complete helplessness as I stand by knowing that I can do nothing other than hold his little hand or gently pat his distended tummy.

Yesterday afternoon he was happily feeding and cuddling with his mum in a comfy chair. As the evening wore on his oxygen saturation level dropped further and further. Minutes wore on as the nurse did what she could. Minutes turned to hours as doctors and consultants were brought in and referred to. Oliver's breathing became more laboured, he became more distressed and was none to keen on the oxygen mask being waved at him. An x-ray was done of his chest, revealing a decent amount of fluid in his lungs. And so he was given more doses of diuretics to encourage the removal of fluid from his body, though at the risk of drying him out as the fluid balance in his blood vessels vs in his tissues was out and he was already oedemus (lots of fluid in his tissues). As a result, today found him undergoing a necessary change in how he is handled and so, as a result, he can't breastfeed and is receiving all of his oral medications and foods via a nasogastric tube, with his fluid levels under constant watch. Although indicative of how tired his little body is, it is a blessing that he is settled and sleepy under the head box and not crying and fighting to get out.

The night before had seen his temperature drop and remain low, ultimately resulting in him being wrapped in an ICU emergency blanket for nearly all of yesterday. In fact, it was just after taking him out of it that the oxygen thing began. Oliver has been keeping the staff on their toes ever since he arrived, maybe this was him changing tack.

Each evening I wonder what things I might do the next day, with the understanding that my little boy, although sick, will feed and sleep and allow us to do some regular things without turmoil. That has yet to happen. Each day is a constant rescheduling and reassessing of plans, and a reminder that above all, I am here for my son. To love him and support him in whatever way I can, no matter how trivial or useless I feel.

Welcome

This is the start of our blog as we share with you our little man's journey through cancer. Thankyou for sharing this journey with us. We hope that as we share this journey together we will all grow bolder, more courageous, more honest, more open, and closer.