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