Another One Down

We aren't terribly frequent with our updates - sorry about that. I do regularly think about writing, but it never seems to get done. It's been almost 3 weeks since Karli wrote our last entry. Since Oliver has had another round of chemo, we may well be back in the same place by Sunday.

I am taking 5 days off each cycle to help out with our little man, from Saturday through to Wednesday. It is quite exhausting, but nice to be able to spend time with our monkey and to help take some of the load off Karli. So as of Saturday, I will be sleeping in a little bit. Not that it means I get more sleep. I find I want to stay up late and pretend we don't have the responsibilities we have. I'm sure I'm not the only one to feel that way.

Oliver is still taking about 2 weeks before he returns to our normal little man. It's almost like flicking a switch. One day he won't want to be alone, the next he is happy to play by himself forever and a day. As you can probably guess, his development seems to be on hold during the weeks he is feeling the effects of his treatment. But he is still growing and developing, and I have no doubt that he will take off once he can get a good run on it. He is getting longer and is putting on weight, and is getting a good head of hair.

His legs are getting stronger, he is getting better at standing up and sitting back down. He has started to experiment with taking his hands off any supports for a split second when he is standing. I'm excited by it all, anyway.

He has much better hand-eye coordination, and is better able to manipulate his toys. He has also taken to his cars and trucks, so I now have an excuse to start rebuilding a Hot-Wheels and Tonka collection - and no doubt there are some other cool toys that have been released since I was a little tacker. Of course, they are for Oliver. I will be merely quality control.

He still loves his books, though you need to be a speed reader to get all the words in. Needless to say, he loves the pictures, and loves to turn the pages and lift (and tear) any flaps. I have become quite adept at repairing books with clear contact. Once he actually starts school I will be the master at covering books.

Today went well. We were in and out fairly quickly and smoothly. It seems to be getting easier for us. I'm not sure if that is a result of the hospital's change of policy with regards to how it works through patients, or because we didn't have to sit and bide our time for extended periods of time, or because we had a room to ourselves today. Whatever, today was quite pleasant, all things considered.

The day was certainly made better by seeing some of our friends in much happier states. Little Mitch and his parents were in, and though he wasn't able to have his treatment, he was a much happier little man than I have seen for a long time. And to know that they have been home for a few weeks after being at Ronald McDonald house for so long is just great. He still has a couple of years of maintenance ahead of him I think, but a monthly visit will be better than having to be across the road or in the ward. And to really brighten our day, we got to see the beautiful Ava. As we were heading up to the carpark, Ava and her mum were heading in. Ava has grown so much, and her beautiful hair has come back, and her eyelashes are just so gorgeous. They're longer than her hair! She looked so very good. It's hard to believe that she is a little ticking time bomb. She is in remission, but they can't remove her tumour. I can't imagine what mum and dad must be feeling.

This is Oliver pushing his trolley along the path in Hyde Park. It's not very close to us, but it's my favourite park. Always green, with big deciduous trees shading the path all around the ponds, and lots of ducks.

This is one of the few books we can actually read to him before he turns the pages. Humphrey is almost as cute as our happy little baby.

Daddy usually leaves Oliver to entertain himself. This is where I found him the other day, sitting in his Thomas couch waiting to be read a book. I think Aunty Mandy and Uncle Mike would be very happy to know that their gift is the official reading couch.

Why the helmet you ask? I have finally been able to get Oliver into his bike trailer. I know he doesn't look terribly impressed, but who likes to wear a helmet anyway? He did actually enjoy going for a ride, after I managed to get the helmet to fit properly. I'm hoping to get in some trips while I'm home during the next week. I'll be devastated if he decides to become an indoor boy when he get's older.

I almost forgot, we have had some great news in that a number of friends have had little ones over the past few weeks. We do have a strange mix of emotions when a new baby comes into the world, but we are so looking forward to watching these little bubs growing up with our little bruiser.

Balance

I want somebody to rant to, someone to understand how difficult the last few days have been and how desperately sad I am that this is happening to my little boy. I want to protect him from everyone and everything and tell everyone out there what it is like dealing with a child on steroids and watching Simon administer chemo to our son for 5 nights. It begun Thursday morning and is still going and we will see how long it takes to slow down. I just want someone to listen, not to offer pat answers or clichés, just to listen and tell me how shit things really are.

It is like having a newborn baby all over again during the day (feeding every 3 hours) thank goodness he sleeps at night. He is whingey all the time and doesn’t want to play. We are lucky to get him walking with his trolley for a bit and he is his most content when we go for a walk in the pram, otherwise he just wants to be held, but even then he can still whinge and I just don’t know what he wants other than milk and rusks, which seem to be his favourite things at the moment. Even bathtime isn’t the happy time it usually is, he is miserable! We do get smiles and I am amazed when we are out walking that he will smile at strangers and I think ‘Wow’ this kid feels like crap and yet he has the energy to smile at someone he has never met and I feel so proud of the little boy I have.

This has been the most tiring time with Oliver on steroids and I am so lucky to have had Simon to do it with me, although Thursday on my own was exhausting. The last time I did washing was Thursday I think and the situation was getting so bad today that there were flies in the laundry buzzing around the pooey flannels. Oliver's little bottom is vulnerable to breaking down so instead of using wipes, we use soap and water on flannels. Neither of us has had the time or energy to do household jobs.

Oliver from time to time will refuse to eat something, it can be fruit or vegetables and Simon has wondered it for a while, does it have something to do with the chemo affecting his taste? He became fussy after having gastro and I gave in for a few days, but we have had to be firm with him, otherwise he would only eat fruit and rice cereal and no meat and veges, but today he has refused both apple and pear and will eat only a little of something, which is strange for a super hungry child on steroids, just another thing to keep an eye on.

We did receive positive news on Wednesday, that we only have to go into hospital every 3 weeks on Oliver's treatment days unless we are concerned about anything in between; and we are able to reduce the amount of times we do both toe and mouth care by half, 2 instead of 4. For those of you who dont know why we do toe care, well Oliver's toenails have a tendency to become ingrown and as this would be a source of infection which is important to avoid, we wrap his big toes in betadine soaked gauze to avoid that. We have also been a little concerned about Oliver's gait over the last few weeks as it looked like he was walking with his toes pointing out and perhaps swinging his legs round rather than lifting his feet to walk, however the doctor on Wednesday seems to think Oliver is just flat footed, but we are waiting on a referral to see a physio. It is difficult to assess as it is early in Olivers development coupled with the fact that he has only been walking for a few months, not yet on his own, still with the aid of his trolley.

One of the highlights of our Wednesdays is to go to a cafe in West Perth called In2Go and get coffee's and bacon and egg sandwiches after Oliver has had his fingerprick and before we see the doctor. Georgia is lovely, the lady who owns it. Simon has been going there since our hospital stay, so she has been following Oliver's journey too. The other highlights are seeing the familiar faces of doctors, nurses, children and parents. We took Oliver's trolley into the hospital this week to show the doctor how he walks and lots of the nurses came out to watch him and were so impressed to see our well little boy (in comparison with how sick he was in hospital) walking around.

Happier Times

Tonight while Oliver was up, he was much happier which was great. He wasnt long in the bath, but the time he was in there he was happy, smiling and playing and he walked around with his trolley for ages. This was welcome relief for us and the reminder that things can change so quickly. Over the last week or so Simon has taken Oliver to Hyde Park a couple of times and let him walk his trolley around there. We went again today, he didnt want to walk very far, but he enjoyed looking at the ducks, dogs and people. It is lovely there, the path is covered in shade with the overhanging trees, big old trees.

Oliver ate almost all of his veges tonight, devoured his milk but wasnt keen on sweets. Neither the pear or banana did it for him, in fact he was gagging - so not quite sure what that tells us.

I am pleased to report that the situation in the laundry has improved, all the flannels are washed and on the line, all flies exterminated and another load on the go - I feel a little more in control.

I was blessed this evening to be cooked a roast dinner by my amazing husband, it was such a treat at the end of a hard day and I found it so relaxing too, to sit at the table, eat and chat.

Well, that's it from me, thank you for being my listening ears.

Lots of Love

Karli

Cycle 8

We are back to PMH tomorrow for Oliver to have his next lot of treatment - as long as his blood work is OK. There's not a whole lot more news to give. We are over our gastro thingy. Oliver's appetite has returned to normal - and will soon get abnormal with the steroids. It appears that the chemo may be affecting his ability to walk properly. He can motor along, but his movement pattern isn't great. Then again, it may be quite normal for someone who is learning to walk.

Karli wants you to know how excited she is about tomorrow - I think I detected a note of sarcasm in her voice.

So, our lives are the normal that they have been for the past 6 months. With any luck, we will keep giving you updates of our little boy's growth and development, and little news about cancer.

This is a lullaby written by Cody Robson. Cody is a very talented musician, but more than that he is a friend, as is his family. He wrote this for our little man.

"Hush now baby don't you cry
You weather the storm so well
It's time for you to dream about
Rainbows and clouds
The choo choo train rolls by

In sleepy land the birds they sing
A night time song for you
The stars and moon will shine on you
The breeze will rock you to sleep

When you awake Mum and Dad
Will be here right by your side."

Words and music by Cody Robson

Thanks Cody.

All Out

Well, as you probably could have geussed, I came down with Karli's bug on Wednesday afternoon - and we think Oliver did too. Fortunately, it didn't get either of us going too much, but did have our tummies doing cartwheels for a while. So I took the rest of the week off just to make sure I didn't give it to any of my clients - not good customer relations.

Oliver had some diarrhoea and a very large spew - so I'm told, I was having my own little show in the bedroom - but then seemed to suffer mainly from an upset tummy. It has made him much pickier about his food, but hopefully that will disappear soon. Karli had to take him back in to hospital on Thursday because he spewed his tube up. Fortunately we had a new one put in because the other one seemed to be doing a considerable amount of leaking. He was given a once over by the doctor, but because he was drinking well and holding everything down (and in) there was no cause for alarm.

It was hard to keep myself locked up in quarantine for the day. It is special to hear him get excited whenever he heard my voice later in the afternoon though. Apparently he has some fondness for his dad.

We're all on the mend now. Still a bit tender and choosey about what we eat, but everything seems to have settled down fine.

One Week On (or off)

Well, it seemed that maybe I didn't need to take the time off last week. Oliver was pretty good until Sunday. Even then, he hasn't been as much of a handful as he has previously. But I had the chance to get a taste of life on the other side for the past 2 days.

Sunday night Karli came down with some nasty gastro-like bug that had us both up at 3 in the morning. Karli was in no state to look after Oliver on Monday, so I took the day off to chase after him. Needless to say I was pretty exhausted by the end of the day. Mum was a little better on Tuesday, but still not able to look after our monkey, so I skipped work today too. I'm looking forward to going back Thursday for a rest! The week off has been a bit tiring. Oliver was pretty excited to see his mummy today, after she was quarantined for 36 hours - and so was I.

Oliver seems to have a bit of a sore tummy tonight. It's the same as last time. However, I've just been in to check on him andI think there was a familiar smell in the air. Any problems may have worked themselves out.

We have been given a reprieve and don't need to head in for a blood test tomorrow - Oliver's thumbs won't know themselves.

Oliver has been walking with his trolley for a while now, but in the last week he has learnt to turn himself around. Here's a bit of video. It's probably more impressive to us than you, but we think he's pretty amazing.

Cycle 7

Almost halfway. Soon we will be able to start counting down the days until we won't have such regular visits to the hospital. The day went quite well. Karli and I were both relaxed and easy going about it all today, which is fairly unusual. Oliver was his usual beautiful and cute self, playing up to all the nurses and enjoying the attention. We even managed to get him to sleep today - probably due to the fact that we were put in room 6, and so had a nice quite space to ourselves. We even managed to finally catch up with the music therapist, Louise. Every other time we have tried Oliver has either been too unwell, asleep, or we have taken off before she was available. I think Oliver enjoyed it. He seems to like music and is always keen to bop along.

We've been having troubles with his nasogastric tube of late. Apart from the couple of visits to the hospital to have it re-inserted after our ratbag pulled it out, it seems to be getting blocked more regularly, making it difficult to get his meds in. It has been more of a nuisance up until now, because for the next 5 days we will be giving him his steroids and there is a specific amount he needs to get. He also receives mercaptopurine, the one that I need to administer with gloves. needless to say, I'm not too keen on that coming out and going all over the place. It worked okay for us tonight, so we will keep our fingers cross.

As always, it is difficult to feel to sad for ourselves when we consider the plight of our friends around us. One of our little friends shaved her beautiful red hair off on Monday before it all fell out. I'm looking forward to seeing her in her blonde wig - though she may not bother wearing it to the hospital as bald heads don't really stand out. Another young bloke kissed his AFL dreams goodbye with some serious arm and leg surgery that will take years to recover from. We learnt today that 3 young teenagers lost their battles in the lead up to christmas. And unfortunately, there seems to be a fairly large number of new faces in the waiting room. Our plight is so very, very relative.

On a brighter note, one little guy who is 2 weeks older than Oliver is almost finished his treatment. It was so good to see him with some hair and colour, crawling around without a drip in tow, and to see his mum looking noticeably relaxed - as relaxed as you can get in her shoes anyway. We only pray that he has a bright future that only takes him further and further away from the hospital.

After Oliver's last treatment before christmas we decided that it might help if I stayed home for a few days after the next lot, so I'm not working until Monday again. I know, what a life.

Here's a video of Oliver with Louise, the music therapist.

Nothing to Report

It's been a while since we have written. it seems that I can't really muster too much enthusiasm for it at the moment. Hopefully, I might find some over the next few days.

Our little man is doing well at the moment. His blood counts are good, higher than they have been for quite a while thanks to the change of chemotherapy. It seems the effects of his last treatment have hung around for a while. Only today does he seem to be back to his usual self. Unfortunately, he gets another dose next Wednesday. I don't think he has ever been affected for quite so long - at least we haven't noticed it.

I have found myself wondering about his development lately. I should probably have a better idea of where he should be, but I do know enough to know that there are very large differences between children at the best of times, that he was practically bed-bound for 6 weeks at least, that the chemo puts him on such a rollercoaster that he doesn't know what's happening, and that at such a young age, he has plenty of time and opportunity to recover. Then there is the question of any side-effects that we haven't discovered yet. He's happy, crawling well, walks well behind his little block trolley, is affectionate, giggly, bright, responsive, and we think is using some very basic signs to tell us if he wants "more" food or is "all done". So I probably shouldn't worry, but I suppose all parents do.

Oliver turned 14 months old today. Tomorrow is exactly 6 months since his diagnosis - 10th July, 2008. 6 more months of treatment to go. How can one so small be so courageous.

Don't get too excited. This is minutes before we headed back in to the hospital to have his nasogastric tube reinsterted.