Happy Birthday Oliver 2

Sorry if it's a bit big. This is Oliver playing in the fountains.



Taking Aimee for a walk.

Happy Birthday Oliver!

I had every intention of doing this yesterday, but didn't quite make it. Our little monkey is now 2 years old and every day he does or says something new. I could sit and watch him for hours, except I'm a little to prone to want a cuddle.

We had dinner with Nanna and Grandad and Gatey on Sunday afternoon. Oliver liked his silver crocs, but nothing was as good as his new puppy - luckily it's plastic and rolls along. Thanks Nanna. Oliver has named it Aimee - he misses Uncle J and Aunty Aimee very much, and he's already got their Christmas present from England to put under the tree. That means Dad can start Christmas early this year - yay. As I write, Oliver is 'talking' to Uncle J and Aunty Aimee on the phone - his hand up to his ear and chatting away merrily. It's a shame he isn't so chatty on the real phone.

Yesterday we took Aimee for a walk in the park and Oliver played in the fountains. Grandpa came to visit at lunchtime and Oliver was wrapped with his new elctronic book and blow up pool. Of course, he loves the Thomas duplo train Mum and Dad bought him too, and the playset from Oma and Peter has been a favourite since it was put up. Dad needs to get busy and provide some shade so it's usable during summer.

Enough rambling, here are some photo's and videos. Thankyou to everyone for their emails and messages.

Where's the truck, Mum?

Is that wet?

Taking my puppy, Aimee, for a walk.

Yay for me!

Worn out from the park.

Almost 2

Well, it has been a long time since we have updated our blog. Things are certainly a lot different to 12 months ago. Oliver doesn't require any medicines at all any more, and he is up and about in true little boy style. Monday will be his 2nd birthday. He is talkative (as long as you have the special skills to decipher what he is saying) and playful and very affectionate. We adore our little man. Thanks for your continued support.

Playing at the park near Nanna and Grandad's

Afternoon tea with my mate Angus.

Riding my Wags the Dog rocking horse - thanks Grandpa.

Hanging out with my beautiful Mum.

Great News!

Hello People

Just a quick one to let you know that Oliver received the all clear on Friday! He is officially cancer free!! And whilst this news brings us relief, we have just read the devastating news for our 5 year old friend Imogen, that her cancer is back - please pray for her & her family.

Lots of Love

Simon, Karli & the very delightful & very cheeky Oliver

No News is Good News

Hello Friends

I am sorry for our lack of updates over the last month.

Oliver has had all of his end of treatment tests & scans, except for his PET Scan which is scheduled for 26th August. So far the results are good and there is no sign of cancer. PHEW! What a relief! We will have all results by 4th September, so we will endeavour to keep you posted.

Simon has started Uni and had his first prac placement today at Charlies - it was mostly orientation. He also started back at work this week after taking 5 weeks off to have a break with us & get started at Uni.

Oliver and I have managed somewhat of a routine this week. We head off for a walk in the mornings - good for my mind & my thighs! Nowdays though due to having an active little man, this walk at some point must contain some out of the pram time; in the form of pram pushing (by Oliver), walking & playing at the playground. This is all fun stuff which I love, but I find I do have to be in the right frame of mind to partake in it & remain patient. Speaking of patience, mine has been lacking of late & I have found particularly this week, that Oliver is more than willing to test it. It seems everything has become a battleground, from not wanting to wear slippers to constantly wanting to watch the T.V.

There is plenty more to say, but I am keen to snuggle up on the couch with a cuppa & some chocolate.

Au revoir for now!

Lots of Love

Karli (Simon & Oliver)

End of Treatment

It has now been 1 year and 1 day since Oliver began his chemotherapy, 1 year and 2 days since his diagnosis. I must confess to a lack of motivation to blog these past few days and with that motivation still flagging, I thought it best to let you see some of our recent holiday pictures.

After Oliver's last treatment we headed south to Busselton. We had OK weather, but enough wet and stormy weather to satisfy my desire for some winter and to create puddles for our amazing little man. Whilst it wasn't fantastic, with Oliver still being on his meds for half the time, I'm glad we marked the occasion in some way.

Oliver chasing mum on the path near the parkhome.

Having a bath in the wash basin - it's a bit tight with all of those toys.

Go Eagles!

Oliver loves hommus...

...and chocolate

Reading with Mum.

Massaging mum.

All set for our favourite passtime...

...walking through puddles.

Been A While

This could refer to many things; 'been a while' since we last wrote and 'been a while' since we began this blog and our very personal journey with cancer. Well it is almost over - treatments that is, we wont be able to get rid of PMH that quickly (Bless Them) as we will have tests & scans and then routine check ups for a while, but one thing at a time I keep reminding myself.

So here it is, Oliver's treatment concludes next Monday - by which time we will be in Busselton having what some would class as a holiday, but I am thinking I should term it something different like 'A home away from home', so that I dont get too disappointed. Dont get me wrong, I am very thankful to be able to get away and I do love staying in Busselton in the winter enjoying the rain and what some would term 'miserable' weather - we both do, but the catch is Oliver will be on treatment & then recovering from it for most of while were away. As I write I realise what I need to keep in mind is that one day soon we will be able to have a holiday free from anything to do with cancer - hopefully!

I am kind of wondering if we will get presented with some kind of medal on Wednesday as we venture into PMH for Oliver's last treatment, I definitely feel like we deserve one. I know that the nurses will mention it & that people will be excited for us. This is lovely, but what I myself have been realising of late, is that there are a lot of thoughts and emotions that Simon and I have not been able to process during this time of surviving Oliver's treatment that will now have the opportunity to surface. As well as hearing from other parents whose children have been through treatment for cancer, that the end of the treatment spells CRASH for the parents. I guess I want to warn some of you that I am not expecting life to be all sunshine & roses as soon as Oliver has finished his treatment.

On a positive note, we are off to buy gumboots tomorrow in preparation for lots of 'puddle jumps' down south. Oliver thoroughly enjoys puddles, in fact Simon has some footage of this & I am talking huge puddles at Hyde Park so I will have to get him to include that. Right now he is cooking us dinner, which he has been doing a lot, he does it so well, I figure I might as well give him the satisfaction of producing lovely meals, hee hee. I am thankful that Simon is creative and happy to cook, because it is certainly a daily task that I struggle with. In the past we have called ourselves 'Team Roebuck' and I think this rings true, as we do work well as a team.

Well I wonder how life has been for everyone reading this of late? I would love to hear updates on how you are all going.

Bye for now

Love the Roebucks

Resorting to Chocolate

It is only just after 6am and already I am into the chocolate. Oliver has been awake since 5:15am, with a poo which I changed & then put him back to bed, since then he has continued to chatter, mostly to say Dad, Dad, Dad. I gave up the notion of going back to sleep a while ago & then was getting so agitated in bed I decided to get up. My rule is that I won’t get Oliver up until 6:30am.

I just read Simons latest blog entry and so softened that I went in to settle my son as he had been crying for the last 10 minutes, at last there is silence – for how long? I don’t know!

I am losing my patience. Yesterday I was very close to losing it too. I picked/swung Oliver up yesterday roughly & he just looked at me with these wide eyes, he knew I was mad & we stared at each other for half a second & then I just made a funny exasperated noise. I know it is still the drugs affecting his behaviour, he has about a 5 second attention span, perhaps it is actually a few minutes, but to me it feels like 5 seconds.

Another favourite in his vocabulary is Nan Nan to which following he makes a dog noise, which means he wants to go and see Nanna & Bindi (their dog). So because the weather was yucky & I felt we needed to get out of our house to a different scene, we drove down to Nanna’s just to visit Bindi as everyone else was at work. This is where I noticed the 5 second attention span, as I was hoping he would be enamoured enough with the dog & the different toys at Nanna’s that I could have a cup of tea – silly me! Silly me for even making a cup of tea as that ended up spilt on Nanna & Grandad’s rug, lucky it is a colourful one, so the spilt tea is not too noticeable, it was whilst cleaning this up with Oliver motioning that he was ready to go home, followed by him playing on the stairs & then hurting himself that I then picked him up roughly.

Needless to say yesterday was a long, tough day. We both missed Simon as he had been home with us for the past 5 days.

You may well notice that it has been a long while since I have written on the blog & I admire Simon's dedicaton to being able to do so, despite how he is feeling. For me I have been battling with anxiety & depression and so therefore have not felt like writing.

So back to the tea & chocolate, I confess to being at it again, but I have had breakfast in between. After giving Oliver his 1st breakfast of cornflakes & peaches in his highchair, then his 2nd breakfast of toast & milk at his table, doing some chores, playing trucks, reading stories - I am exhausted and you would not believe it, I am not even finished my cup of tea and my little blessing is awake again - so off I go for Round 2 of the day, knowing that Simon will be home shortly makes it not so overwhelming.

Ta ta for now

Love Karli

Resilience

Resilience is the word that comes to mind whenever I think of my little man. People are always asking us how he is, and my reply is usually "Great. Without his tube you wouldn't know he was sick. It's like water off a ducks back". I feel this is true - only he can really say - but I also feel as if I'm devaluing Oliver's experience and struggle.

He can't tell us what he is really feeling. We can only go on what he displays to us. I often wonder if he feels rotten sometimes, but is so used to it, it's normal. I wonder what sort of threshold he will have for pain and illness when he is older. I have no doubt he'll be a lot tougher than his soft dad.

A few weeks back I took Oliver to see his Grandpa and his wife in York. Uncle Jason and cousin Kaitlin were there too. Oliver loved spending time with Uncle Jason, and I think Uncle Jason liked it too.

In The Park

My favourite place to take Oliver is Hyde Park. He doesn't mind it either.

As Oliver has grown, he has changed what he does and likes to do. He's happy to wander around without his trolley now, although it still gives him more balance and pace so we take it just in case. Although he get's so excited about seeing the ducks, he doesn't seem that interested once we get there - but he's happy to sit and watch them during his rest and snack periods. He started to chase the magpies and mudlarks yesterday, and will plop himself down in a pile of leaves and just start picking them up, looking at them quizzically, then putting them down. One of his favourite pass times at the park has been to push his little Tonka truck along the benches and walls. He has also taken to the slide. The park has a few different play areas for different ages which means that there is a slide with a much gentler slope and distance. He will climb up the stairs, back himself onto the slide, then slip down on his belly, feet first. Very ingenious, and it brings a lovely smile to his face too.

In The Garden

As our little man has grown he has become more and more adventurous. He never liked to touch the grass, but now, as you can see, he doesn't mind it at all. He helped his mum rake up some leaves the other day. Now we just need to get him to keep them in the bucket.

Friday On My Mind

Well, it's the last day of the week and the start of my days off with my little man and beautiful wife. Despite the reason behind it, I enjoy the days to spend time with my family.

I had to go back in to PMH today because we forgot to restock our mouthcare stuff for the monkey. While I sat in the pharmacy, a recognisable name was called out. The mum was sort of familiar, so I asked the young girl she was with if it was who I suspected - I was right (unsurprisingly - just kidding. I fake being wrong sometimes) I was at a loss as to who the young girl was. The last time I had seen her she was mid-thigh height at most. Admittedly that was 7-odd years ago. Now she's taller than me - not a difficult task you might think, but she is only 15, and her mum's a shorty too. How strange it was to run into them, particularly at the PMH dispensary. But it was great. Hopefully, we will get a chance to catch up another time, and maybe reaquaint ourselves with a game of 500 aswell. I hope we can catch up soon Q-family.

Since some of you have missed out on the last month of our little man's life, I'll be sure to put up some more photo's and video's. He is confidently walking on his own now, though still a little shakey. I did notice today, however, that he seems to be steadier when he is on his treatment. Very perculiar. Here are a couple of photo's of him in his new dressing gown bought by Oma. He loves the holographic eye's on the hood, and he looks so cute.

He's also become quite adept at opening and closing drawers and doors. Fortunately, he prefers to close things, especially the fridge while Dad is getting things out of it.

Better Late Than Never

Oops. It's been a while. It's not that anything hasn't happened worth reporting, just that we haven't really been able to get up the enthusiasm to write. Rather than this be a massive entry, I'll promise to write regularly over the coming days.

Since our last entry, Oliver has been through two more rounds of chemo. Yesterday was his second last. It took practically all day due to staffing issues at the hospital, but we don't plan to do anything else on those days anyway. Yesterday was a bit of deja vu. We were given a room to ourselves, which always makes it a bit easier. We were placed in Rm 6, however, and combined with the wet and dreary start to the day, it seemed as though we were back at the start of it all over again. Rm 6 was the room we spent our initial stint in, and was home for almost 4 weeks, if I remember correctly. Of course, our little man is so much healthier now, but it just had all the hallmarks of those days 11 months ago.

You wouldn't know that he had just had chemo

I am taking July off. Oliver has his last treatment on the 1st, and so we have decided we will take off down south when we can and enjoy some time together before I need to be back for my university orientation day on the 14th, ready to start on the 20th. We didn't see much of July last year as most of it was spent in PMH. Hopefully we will get a chance to have some semi-normal time as a family without any chemo on the horizon - although there are a number of tests he will need during July and August.

Reading with Nanna.

Oliver's favourite on-line song.

Port Removal #3

So we rocked up this morning, down on 3B, and received a rather inquisitive look, that was followed by a 'What are you guy's doing here?"

After having been admonished for going to the front admissions desk last time, we were told to go back to the front and they would admit us. We didn't see 3B again. We were up on the Surgical Day Procedure Unit, along with everyone else being admitted that morning it seemed. Fortunately, we were the first to be freed from the waiting area and were looked after by a lovely nurse. It's nice to know that the nursing staff are great throughout PMH and not just in 3B.

After distracting our little man, and him having a snooze, we were in pretty much on time. It was all over in about 40 minutes, and soon we were in the ward recovering. It didn't take long before we were on our way home. So nice to have a quick visit, though we were a little bit upset that we didn't tell them to do the surgery when we were next due in for chemo. Despite the fact that we have an amazing little boy, it can't be nice to have to fast after 5 days of steroids.

But you can't keep a good man down, and he's back in to the swing of things as if nothing ever happened. Amazing.

Bookworm

Sitting at my new table and chairs.

Flicking through one of dad's books. Oma bought it back in 1984!
Don't mind the jowls - it's the steroids. No, really.

We thought he was looking for pictures, but he likes to flick the pages, so the thicker the better. I wonder if we still have the 10cm thick dictionary in the family.

Booked Back In

Well, we just can't keep ourselves away from day trips to Hotel 3B. We got a message today to let us know that Oliver has been scheduled for removal of his port on Wednesday at 9.30. So that means more fasting and waiting. Hopefully, since it is early in the day, it will mean we get away quickly. Well the news certainly hasn't slowed down Oliver, and neither has the treatment this time around. He is testing out his legs more and more. Enjoy. We do.

Hard To Keep Cute Down

We are halfway through this cycle. His steroids and mercaptopurine have gone up again, due to his weight going up another 500g. We have expected this to result in a grumpier little man, but he seems to be handling it OK, almost better in fact, though that is fairly subjective depending on the state of his parents.

He has been walking more and more, though still loves his trolley. He is fairly wobbly at the moment due to his steroids, but is still eager to give his legs a workout. Won't be long now. I thought I'd share a few pics and video's with you.

Here is Oliver in a few of his favourite places.

Of course his favourite place is on mummy's shoulder. Can't say I blame him.

Next would have to be his bookcase. Let him do his own thing and it won't be long before he is going through his books.

The path below the lemon tree is also a favourite. Normally he negotiates it with his trolley, which I can't imagine is easy.

Oliver has learnt to sneeze. We think this is the cutest thing ever! We are a bit biased.

Sorry, I don't know how to re-orient this. Any idea's? Oliver is studying up hard. Actually, for those who know, he's flicking through my Boardman Tasker Omnibus. That probably means something to someone. Not sure what he's looking for, but he's obviously exasperated about not finding it.

In a follow-up to the last random news break, I have enrolled in a Master of Nursing Science at UWA, to begin in July. I'm pretty excited. At the moment I'm obviously interested in paediatric oncology, but I suspect I'll end up heading towards emergency nursing. The course is general and 2 years fulltime, and overloaded, so who knows what will happen at the end.

Let's Try That Again

With Karli feeling under the weather, Oliver and I headed back in to the hotel again yesterday. The plan was to have an IV line put in under a GA. So after breaky at 6.30, Oliver was fasting, and fast asleep by the time I got home around 10. Once he woke up it was off to PMH to pass the time until we went into theatre.

We had hoped that would be at about 12.30 or 1pm. We got in at about 3pm. Given our son's love for food, I was amazed at how happily he played whilst fasting. Though I suspect he didn't sleep because he was too hungry.

He was done and in recovery by 3.30. Clever dad took in his milk and cheese sticks, all which were hastily devoured, with a refill of milk from the nurse's fridge in the recovery area. We were back on the ward by 4, still chowing down, and out the door by 5 in time to enjoy the peak hour traffic.

We were a little concerned about him having a GA, but since they only used gas, and only for a short time, Oliver was none the worse for wear once he woke up. So that should be the way of it for the rest of his treatments, with a heavier GA when they decide to remove his port. Only 3 more to go. I don't think anything else could possibly go awry.

Jinxed

It's official. Dad is hereby declared as being jinxed when taking Oliver to the hospital without mum.

In an effort to let Karli have some time off today, I offered to take Oliver in to the hospital by myself. We briefly joked about my being jinxed, since both times I have done this before Oliver has returned with a cast, and then had to have his port removed. "Ha, ha," we spoke in jest. "What else could go wrong?" In order to break the suspense, in short, Oliver's port isn't working - again!

We got to the hospital parking area and headed off to get a coffee and some breakfast. Oliver amused himself with his toys and some crackers while I briefly flicked through the paper as I ate a bacon and egg sandwich and drank my coffee. We then headed in to the hospital. From then it started to go downhill. First we upset Oliver by putting some EMLA on his port site. EMLA is a topical anaesthetic cream that is used to numb the port site so it doesn't hurt when kids are needled. They don't use it on kids younger than 12 months because they are so upset at being held down that the stab hardly registers. But Oliver had seemed to be responding to being run through, so it was decided to put some EMLA on. We had also avoided it because usually it is kept in place by a piece of tegaderm, which causes much grief when coming off. We tried a different strategy of using a non-stick dressing with an elastic 'garter' thingy. Needless to say, taking Oliver's shirt off in the hospital usually results in a fair degree of complaint and protestation. Upset already and it was only 8.45am.

next I asked about bloodwork. In recent times all bloodsd have been done on the ward so the kids don't need to go near the building site next to the pathology lab. Lucky I asked.
"Haven't you gone yet?" "
"No. I haven't been given the form."
So up to pathology to have the boy's finger gored and milked of it's precious fluid. Fortunately we were the only ones in the waiting room.

Back down to the ward for my 9am appointment. Weight and length were taken - 12.05kg and 76.5cm ~ 50th and 5th percentile respectively. Then a walk to get the boy to snooze while we waited for the doctor to see us. At 10.10 I had an idea that EMLA is only supposed to be on for 1 hour, so I headed in to let a nurse know how long it had been, and hoped to remind them that I was still waiting to see a doctor. It worked, they got on to a doctor within the next 30 minutes. Then it was off to get needled.

Oliver wasn't happy about being held down, but he didn't seem to feel the needle. EMLA works apparently. Well, we couldn't get the port to bleed back - strange I thought, although I wasn't 100% happy with the way it was inserted and dressed. It was decided to give fluids to get it flowing before trying again.

The next 2 hours weren't a whole lot of fun. Oliver was very upset. Not happy in my arms, not happy in his pram, not happy with food, not happy to play. Makes for a bit of a stressful time, especially when you are ina room with 6 or so other patients. Nobody likes a screaming baby.

After an hour and a half I decided I'd had enough and unplugged his drip from the wall and went for a walk to the kitchen to heat up his lunch. Of course, he fell asleep by the time I had finished, bless him.

So I sat on the cot and rocked his pram in the same day care room. Some poor little soul started screaming after waking up from a GA. Fortunately the boy slept through it. When he woke up he seemed happy enough, so he sat and played while I gave him his luke-warm dinner. the nurses soon returned to check on him and prepare him for his chemo. Apparently they were having trouble in the chemo room, thus the long wait. Well, the boys port still didn't bleed back, he was none too pleased, and it seemed to be swollen around his port site. In fact, I'm certain I could feel the striations in his muscles - not normal for one so young. So the needle came out and a dressing was put on to soak up the fluid that was leaking out, and we trotted up to get an x-ray to check it all out. What a difference having the needle out and letting fluid drain from the body rather than get pumped in makes. I had my little boy back. Happy, settled and cute as a button.

Back on the ward the x-ray was in and the plan was laid down. The port's catheter had flicked up and so wasn't draining down to Oliver's heart. In fact, it was going up to his little head, against the flow of blood, and into smaller blood vessels. I suspect that this meant that all that screaming was due to a bit of a head ache. It is also the reason why fluid began to leak out of his port site even while he had fluid running in - the result of a difference in pressures. The plan is for mum to take him back in tomorrow to have chemo under a GA, since that's the only way to get a canulla into him with comfort for all. And that's the way it will be done for the rest of his treatment. A GA every 3 weeks until the final one on 1st July. Once Dr Kikiros is tracked down, we will have a date for his port to be removed.

So, that's that. Thank goodness that things are getting easier towards the end of his treatment - not!

Now for some positive news. We saw Dr Angela today and Oliver was able to display his walking prowess. I'm so proud of what my little man has achieved in his short life. We also saw some of our friends today. Michelle, the young 12yo girl with the same cancer as Oliver was in for a checkup. She finished treatment in February, and had to have a lumbar puncture to test her cerebrospinal fluid today. She was a stage IV, so it was in her CSF when she started treatment. She looks great. Happy, no nasogastric tube, and her hair is coming back. It was so good to see her. I can't describe it, but you could see that she wasn't drained. During her treatment you could see a deep tiredness behind her young eye's, despite the beautiful smile on her face. Now there's a sparkle returning.

And the beautiful little Ava was in for a checkup. She also looks great. Smiling, growing, beautiful hair, and just so bright and bubbly. She turns 1 in 3 weeks, and we are looking forward to celebrating with her, although Oliver will be on treatment.

Unfortunately, I met another family with their first baby, a beautiful little 11 month old daughter. In a months time, around her first birthday, she will hopefully undergo a bone marrow transplant. They have a donor and it looks like it's full steam ahead. Thankfully, Oliver hasn't needed such treatment, but I know it isn't an easy path to tread. Please keep this family in your thoughts.

In random news, I have started to listen to John Denver. It makes for quite an ecclectic mix on my ipod - John Denver, Kanye West, and Nickelback. And I'm probably heading back to uni in July. An update to follow.

That Time Again

We're back in tomorrow for the 4th last treatment - hopefully. I thought you might like to see this video. It's been a bit tough to get him to perform on demand, so I had to sneak this one.

Fed Up - Karli's Version

Hello Everyone

It's not that I think Simon's take on being fed up is inaccurate, but I thought I would like my voice to be heard also and probably more because I have had such a crap day & evening. Since Saturday Oliver has been very demanding, miserable and wanting regular Mummy cuddles, on Saturday I think I had some superhuman energy and I buzzed around doing all manner of jobs and I wasnt bothered by Oliver's neediness. Since then it has grown tiring, the poor little fellow has been miserable for 3 days, regular whinging with snippets of play in between. Do not be fooled, there has been smiles and an occasional chuckle, but nothing like the little boy we normally see.

Tonight, he cried from the moment I got him up, changed his nappy, fed him dinner and only stopped crying once I gave him sweets. I had already been teary this afternoon because I was fed up with it all, but seeing my little one so miserable, it didnt take long for the tears to spring to life once again.

Oliver has recently taken a shining to the moon (pardon the pun) and will point out the window, wanting to see the moon. This is very cute and we are constantly amazed at his intelligence, from having seen the moon a couple of times to grabbing hold of that and wanting to see it regularly, however due to daylight saving, he is asleep before the moon rises, a little disappointing. But he seems satisfied with Mummy & Daddy's answers of the moon is hiding behind the clouds or the moon is sleeping - arent children adorable?

It seems Oliver's side effects have capitulated this afternoon, in sweats and an itchy neck - possibly caused by excess sweating. He had his last dose of steroids tonight, so from tomorrow things will start to settle down.

Well we have managed another cycle, only 4 more to go. I feel at this stage it will only be the grace of God that gets us through, for we are well and truly fed up, as is our little man. He is sick of mouth care, screams when we try and do anything with his neck and cries most of the time when I am changing his nappy. I messaged a friend today saying that I was angry with God and she said well it would seem odd if I wasnt, our life wasnt meant to be like this.

I admit to having doubts of late as to Gods goodness as I watch my son suffer through chemotherapy. In the beginning I clung to God, feeling I had nowhere else to go, now I am angry that we are going through this in the first place.

The saving grace this evening was a delightfully delicious Shepherds Pie made by my husband, I admit that he does most of the cooking these days and he does a fabulous job of it! Last night we had steak, with a mushroom gravy, mashed potato, mashed sweet potato with spinach & honied carrots - Yum! I look forward to a cuppa and some chocolate this evening. I imagine it being Easter and all that I might not be the only one indulging in a smidgen of chocolate or more. I wrote in an email before the weekend that I hoped everyone had the chance to reflect on Jesus over the Easter weekend and I confess to not even having read over the Easter story.

Well this is me, warts and all, I appreciate your listening ear and your encouraging comments to let us know that you are following our journey.

Thank you for your love and support.

Lots of Love

Karli

Fed Up

So we spent Wednesday and most of Thursday in at PMH. Oliver's new port went in without a hitch. In fact it went in quicker than expected. Dad came home at about 2.30 to have a quick nap and fresshen up before relieving mum for the night. While I was gone he had his chemo for the day and was then moved out of room 7 and into room 6. Despite the fact that we had lovely room mates in room 7, it was nice to move into room 6 and have our own space, and a bed for me to sleep in. Unfortunately I didn't sleep much in it - we had many annoying visits from the nursing staff during the evening, more than seemed necessary with a little bit of forethought and planning. But I'm not a nurse and don't know what's going on over the other side of the fence. Oliver finished his mandatory 24hrs of antibiotics by 9.30 Thursday morning, and so I had hoped we might be home by 10.30 or 11, allowing me to get in a quick nap before heading to work. No chance. We left in time for me to have a quick lunch and shower, and then jump in my car in time to make it for my first client. I then had to return to PMH after work to collect some bits and pieces that had either been left out of our take home pack, or left behind in various fridges.

We've come to the decision that all 3 of us have pretty much had enough of Oliver's treatment. Oliver seems to be a lot more reticent to be given his meds and other bits and pieces, and you can tell that he is frustrated and agitated at the moment - no thanks to the steroids. Karli and I are over the meds, the bottom care, the mouth care, the neck care, the constant watching for things that may indicate somethings awry.

Our little man was very whingey today - more than I remember him being. The heat doesn't help, pretty much making us house bound for most of the day. Tomorrow doesn't look like it's going to be any better, in fact the forecast is for hotter weather than today. If he's up to it I might try and get him down to the beach for a little bit in the morning. Thankfully he still sleeps through the night.

Life As A Parent

This is a common sight - Oliver stuffing some sort of food in his mouth and loving it.



He wanted to get the bird, but the rusk in his mouth was gone before he got very far, so he had to come back to refill.

It has been a strange week. The Thursday before the last one (does that make sense?) we headed down to Albany to spend some time with Oma and Peter, and to catch up with some friends. We had originally planned to take all of last week, but with the little hiccup with his last treatment, it didn't seem right to take too many more days off work. Our time away was lovely. Karli caught up with some friends, and Oliver enjoyed roaming around Oma's house and garden, frequently requesting a visit to the chookpen. Oma also bought him a Thomas the Tank Engine ride on train that he can push and play music with its buttons. Needless to say he thinks it is fabulous. Karli and I were also able to catch up with Trent and Michelle, who have moved to Denmark with their 3 little boys.

I forgot Oliver's trolley when we went to Hyde Park. He improvised.

Over the last week we have watched as our little man has done new things that have both amazed us and encouraged us in our parenting. Karli has taught Oliver how to say please using sign language, and he is slowly beginning to use it when communicating with us. Similarly, he is able to nod yes and shake no, and we are able to decipher some of his 'words'. He is becoming much bolder and steadier on his feet, though we are still waiting for him to walk properly. He is also becoming more sure of what he wants, which makes for some interesting moments. Kisses and cuddles are becoming much more deliberate, and he has become firmly attached to his little sheep - Shaun (Sean, Shawn, Shorn?) It won't be long before his trolley becomes more of a hindrance than a help, and then we will be in trouble. At least we can hear him coming at the moment.

So our week with our little man has been full of joyful and heartwarming moments.

Unfortunately, our week has also been coloured by the sad news of an old friend. During my last few years as a teenager in Albany, as a member of the youth group at Albany Baptist Church, I used to hang out with a fairly tight crew. Early each Saturday morning Rob, Dale, Stu and I would go out surfing. We spent some great times together, and one of my most memorable experiences involves Dale, Stu and I being towed behind Rob's Hilux on a tarpaulin. The surf wasn't great that day. Dale and his wife were supposed to be celebrating the birth of their new little boy, Tayne, this week. Instead, they are planning his funeral for next week. Mum's placenta had become detached and the little guy was born with very little blood. He fought bravely for a few days, but passed away on Tuesday.

Though I haven't seen Dale for years, and really don't even know his wife, the news was heartbreaking. Maybe it was because we found out what was going on on Sunday, and in some way watched the tragedy unfold from a distance. Maybe I hoped that it would all work out.
I know I feel terrible for not going in to just sit with Dale on Monday night when we returned from Albany. Maybe it's because we had to consider the possibility with our little boy too, but thankfully avoided it (the tough little bugger). Of course it raises for me all those questions I asked before, that were never really answered, but somehow became less significant over time. All I know is that it sucks. Too much pain for too many people, and one little baby boy who knew nothing else. I hope that in it all he was able to know the love of his mum and dad.

Sleep peacefully, darling Tayne. The fight is over.

Dale and Bridget, our thoughts and prayers are with you so very much.

Interesting Days

After much ado we are well into Oliver's 6th last cycle.


Wednesday 18th March
We decided to give mum the day off on Wednesday, so Oliver and I headed in to PMH to hang out with the nurses and have his treatment. After a quick visit to the local cafe for breakfast and a coffee, we made our way into reception and booked into Rm 15. Dr Pavla came in to see us, then just as we were about to tuck in to some lunch, it was time to get needled for treatment. That's when it went pear shaped. Oliver's port wouldn't bleed back, and when they tried to push a little saline in, it began to swell on his neck - not good. It meant that something was leaking. After a quick x-ray, it was found that the catheter had come out of Oliver's vein. First, I had to call Karli to let her know what was happening. Last time I had brought Oliver in by myself he left with a cast on his arm, so I was feeling a little bit of a jinx. After that deed was done, it was time to wait. We went for an ultrasound of his neck so they could have a view of his veins, but it wasn't terribly successful. He was none to keen on laying still and quiet while they tried to get a picture. Since he hadn't yet eaten, he was able to head into the operating theater at 6.

The plan was to take out the offending port and replace it with a new one. The surgeon wasn't too keen on placing the new one back where the old one was, on the right, so she was going to place it on the left. I wasn't keen on this idea. The left side was where Oliver's original port was placed and then subsequently removed when it also stopped bleeding back. It had originally been placed there because at the time his lymph nodes were so swollen that they prevented the surgeon from placing it on the right. It was difficult for him getting it in on the left.

I took my little boy into the theater and held his hand and kissed him goodnight. It was obvious he is much stronger now because it took a long time for the gas to send him to sleep, longer than I have had to endure before. Karli, who had arrived at the hotel by 3.30, and I then headed to the Friendship Room to comfort each other and wait out the hour and a half for the procedure to be finished. As the time came and went, we were both fighting off the nerves. His first procedure took four hours, and so we knew things weren't going to plan. At 8.45 we went to wait in the corridor, as the Friendship Room closes at 9. The surgeon soon came out and gave us an update. Firstly, it was too difficult to get the catheter into his little veins, so they hadn't. It had proven very difficult to get an IV line in too, and so they had eventually managed to get one into his femoral artery at the top of his leg. He was now in the recovery room, waiting for the anaesthetic to wear off. Only one parent can head into the recovery area and mum is always the best option. I sat out in the hallway waiting for them to come through the doors so we could head downstairs. I wasn't quite sure what to expect. The wrist and ankle are splinted when they place an IV canula in those positions. Did that mean he would be immobilised at his hips? That wouldn't be much fun at all. Well, he didn't need immobilising and we were soon back on the ward. We did have to do a quick return trip to x-ray for some reason that I am yet to ask about, but we were soon downstairs and tucking our little man into his cot as best we could.

I sent Karli home for the night so that she could have a good nights sleep. Unlike our first stay, we didn't have a bed in the room, only a recliner rocker, and I knew that Karli would not sleep well in it. She needed a good sleep to be able to make it through the next day looking after Oliver while I was at work. So Karli left and I tucked up on the chair.

Thursday 19th March
Oliver soon woke up, very hungry, so we had something to eat and had a little play before he was ready to settle down again. He woke up again 45 minutes later looking for some more food and play, then again at 5.30, looking to start the day. In the end, I got a couple of hours sleep. I was glad I had organised to get in to work early and finish up earlier too.

Karli sent me a message during the day to let me know that Oliver had received his treatment that he had missed the day before. I rang a bit later and Karli was talking to Dr Angela, Oliver's consultant. She let me know that we would be staying the night so they could scan him again on Friday while they still had a line into him. I was glad to have Dr Angela back. She had been away and we hadn't seen her for a couple of weeks. Whilst I know that the doctors are all qualified etc., I was so very relieved to have Dr Angela talking to Karli and aware of what was happening with our little boy. It wasn't that I didn't trust anyone else, but Dr Angela knows Oliver and his case. I headed in to hospital as soon as I finished work, before heading off for a quick moment at home, then heading back in for the night to relieve mum. I cleared my day for Friday so I could stay at the hospital.

Friday 20th March
I managed to get a bit more sleep, but was glad to be able to slink off for a coffee when Karli arrived in the morning. Oliver was due another ultrasound today, the same one as before, but this time with sedation. We went along with it up until the point that they gave him the chloral, that's when we remembered his last chloral episode - the one where he just got happy drunk instead of quiet and sedated. Needless to say, the ultrasound didn't go to well. We headed back down to the hotel room and he had taken his first bite of a rusk when I thought - what if they want to operate, he had already fasted for the sedation, but if he ate now he wouldn't be able to have a general anaesthetic for another 6 hours. Me and my big mouth! We wrestled his rusk away from him, of which he was none too pleased, because he was going to have a CT scan under a GA as a result of the poor ultrasound. It is surprisingly easy to keep him otherwise occupied, and by 8 that night he had had his CT scan and was freed from his canula. This would be the first night we would spend in hospital without him hooked up to something. A hearty dinner and he was off to sleep for the night.

Saturday 21st March
A quick visit from Dr Angela to let us know what was happening and we were off. Home before 11am, and getting ready for a visit from my mum, brother, and aunt and uncle. Oliver got his first bath for a few days and we discovered how many places they had tried to get a line into him. As well as the pin cushion effect on his hands and ankles, there were tell tale marks on his shoulders and shoulder blades also- the needles leave a fairly obvious mark.

So we are waiting to find out when Oliver is scheduled for his next visit to the OT. The CT showed that the left hand side is "stuffed" (Dr Angela's words) as far as getting a catheter in is concerned, but the right hand side is fine - that was OK with me. So before his next treatment we will be heading in to have another port inserted on Oliver's right hand side. Hopefully we will find out about that soon so that we can organise a trip down to Albany to visit friends and just have a bit of time off to relax and let Oliver spend time with his Oma.

Here are some video's of our little boy. The first two are in the hospital playroom. Our little man loves his music, and we are very impressed that he is able to stand by himself, if only for a small period of time. The last one is of his first stumbling steps. Our little boy is growing up big and strong.

Ingenuity

Our little man's increases in strength and balance have given him the freedom to use his toys in more novel and robust ways. He has decided that it is much more fun to slide his little carpark up and down the hall, and entertained Grandad on Monday night by doing the same thing with his Duplo crate. His block trolley has also become much more of a 4wd, with him venturing off the paths and patio to go cross country across the lawn and through the gardens.

We organised a visit to the ward today. Oliver has developed a serious sounding cough and has large red lumps with pimples on his left arm and one on his little head. We figured they were bites, but we wanted to be sure. They were. Not 100% sure what they are from, but I gave his room a bit of a fumigation today to get any bugs that may have been lurking. We also needed to go in because he had pulled out his nasogastric tube again, the second time in two days.

It's getting easier to go in. I think we are getting used to it. We will be back for treatment next week. It's nice to see the nurses and doctors excited to see Oliver and how healthy and happy he is. I'm sure it must be heartening to be reminded that they are winning some. Unfortunately it is the ones who are having to fight harder that they see more often.

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.