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.