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.

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.