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.