Touch and go for a bit!

Love a santa photo!


Fun in the pool!

What can I say, but have had a few hair raising moments over the past week. Harry has been in the pool and is loving the freedom to have a shower without a worry of getting the broviac wet.
We had some friends round on thursday, some who have now left for Brisbane and all the kids had a great time in the pool. Think it was a bit much for Harry however as when he got out of the pool he slipped. Jumping catfish, I nearly had a heart attack. He cut his elbow and knee and also felt like he had bent his ankle back and not the one on the good leg. He was absolutely terrified as he thought he had snapped something. Managed to get him to sleep and calm him down, and in the morning he went off to school. I rang the plastic surgeon as our orthapedic surgeon is away for a couple of months, and he said if Harry was in pain after the weekend to bring him in. Harry hasn't been using his ankle so I decided to take him in to see if he had done anything or was it more that he was nervous at the thought of another operation if he had done something? Anyway I am happy to say that all is ok. When he had the x-ray I asked if I could have a look as couldn't stand the suspense of waiting for one of the doctors to have a look and not that I am a doctor, but all looked to be where it was before, so felt a sigh of relief!
Saturday night Harry came in and asked me to take his temperature. It was 38 degrees and this means that if it doesn't go down in the hour then you have to take them into hospital. So we had dinner and I packed Harrys bag, and luckily after checking half an hour later it was down to 37! Phew that was a narrow escape!! I have to say we have been incredibly lucky so far as we haven't been admitted other than for chemo. I realise that this luck can't go on forever, but for now we have to just enjoy our time out.
Nanny pat arrives on Sunday and we are looking forward to seeing her, but before that we have to get the christmas decorations up and start to get in the festive spirit!
Enjoy your week.
PS If you are still awake and I haven't put you to sleep, please write a comment, somtimes I feel like I am talking to myself, well most of the time actually!

Go Harry!

Well done Harry for getting into PEAC! So pleased you got your mothers brains!!!!! Missed half the year at school and still you are a star!

All is good at home with the kids, although Ellie is a bit of an emotional wreck right now. Poor thing doesn't know if she is arthur or martha and cries for nothing. I know it is all because of the complete upheaval in her life, but it is hard when she turns round and says 'you do know I am doing this for attention, don't you?' So she is either smarter than your average bear and is playing us or she has been listening to everyone saying that she will be looking for attention!

Tomorrow we have our weekly bloodtest and then hopefully Harry will have the all clear to get in the pool.

28 jumpers are confirmed and deposits paid for the jump, but still places for a few more. Going to York on the Friday night to camp, jump first thing Saturday and celebrate that we are still alive for the rest of the weekend! Sounds good to me.

Looking forward to the end of this year and hoping that 2011 will be a far better one. So much has gone wrong lately, and there really must be some good luck coming our way soon.

Amongst a million other things, Darren was helping a friend at the weekend and ended up at Fremantle hospital having a piece of a drill removed from his eye!! The saying it never rains but it pours springs to mind a lot right now. Someone is trying to test us and right now I feel like shouting 'go on give it your best shot! Throw as much as you can at us, because my shoulders are getting broader each day!'

Hope you all have a great week, and will see you soon!

PS The bottle openers will be on their way shortly and will be ready to purchase from early next week! Great stocking fillers at $5 each and funds raised go to Ward 3b.

Round 10 done!

The Mini Moke has now been redone!

I should feel sort of excited as we are now over half way through our treatment, but feel a bit shattered after 3 weeks of treatment, and I haven't even had any chemo so can only imagine how Harry is feeling.
The week started off with a 7am arrival at PMH as Harry had to have a kidney test, and as he was booked in for surgery in the afternoon we had to have the test done early. The kidney test was done and then in the afternoon he had the broviac removed and the port put in. Considering the last operation he had, this one was going to be a walk in the park, but understandably he still got a bit upset when the time came. The operation took an hour and then he slept most of the night. He was in a bit of pain, and had a couple of painkillers but by Tuesday he was fine.
Chemo started in the afternoon on Tuesday, using the port for the first time. Unfortunately as these are 2 chemo's that can't be mixed, they had to keep the canular in his arm and put chemo through this as well as the port. It was all a bit difficult as the left arm has only just come out of the sling and now the right arm is strapped to a board, so as you can imagine it was another few days of being on call.
An MRI and CT had been booked, rebooked and then rebooked with all the changes of operations etc and again we had to change the wednesday booking to Thursday for a CT and then Friday for an MRI. I wasn't overly pleased as we have spent 3 weeks in hospital and now have to come back on Friday to do an MRI.
Thursday morning started off well. Harry went off to school quite enthusiastically and made Penguin Waffles. Thank goodness he goes to 'real' school occasionally as he really hasn't done much in the hospital. The kids either feel sick or they do cooking or art?!? At 10.30 they have a break and then Harry returned to school after 11. Next thing the nurses are running around as Harrys line which is connected to the chemo has come free, and chemo is running over him. The blue coats and purple gloves appear and spill kits are opened up. Luckily there was no lasting damage, but Harry was a bit upset, more so from the shock of what happened. Clothes had to be sent home and washed 3 times, and Harry had to be reshowered to make sure the chemo didn't attack his skin.
On Thursday afternoon there was a presentation of money from the Police who rode their motorbikes from Perth to Canberra to raise money towards the Mont Blanc Project, upstairs in megazone. They wanted some kids to go up there, and after first being told he could go, Harry was told he couldn't because he was still having chemo. So we are sitting in the room and waiting and then we are told that the Ward Manager has said Harry can go as she is going to be upstairs as well and off we go with Nurse Rachel and another purple spill kit bag. Luckily nothing happened and there was a bit of channel 10 filming and some yummy food. Just after the cheque was given we had to leave as the chemo machine started beeping.
Then we go off for the line flush and get ready for our CT scan and then we are free to go till the morning.
So we get home for the night, and I am tired and grumpy. Got a good nights sleep and then back to the hospital in the morning. A plastics appt. had been made for 10 and then we had the MRI at 1. We saw Dr Savundra, who is a really nice guy. He is still saying that Harry needs to be cautious as there isn't a lot of healing going on in the leg but the arm is healing well. So the wheelchair is going to be our friend for another few weeks yet. Going in the pool should be good for physio, and by next wednesday that is where we will be. Afterwards we tried to get in early for the MRI, but no luck and we saw Jules and Will who were also at PMH and had a coffee and a chat. Then we went down to the ward and caught up with Maddie and Nicola, and waited till 1pm and off we went for the MRI.
We go upstairs and have to fill the form in and the man doing the scan asked if Harry had any clips in his arm. On Harrys x-rays there are little lines and I thought they were blood vessels, but after asking last week found out they were clips which were used to clip the blood vessels. So we tell the man and say 'you better check the x-rays' and then he comes back and says 'well we can't do an MRI as there is far too much metal in his arm!' Seriously, well you can imagine my reaction. We have just spent 3 hours in the hospital when we didn't even need to be here!!! Aaaaarrrrrrgggggggghhhhhhhhhhhhhhh!
So back home, to pick Ellie up from school and then down to Point Walter for the usual Friday afternoon session. Harry is doing well considering the Chemo he has just had, and just feeling a bit out of sorts. Hopefully we will be able to keep the sickness at bay and hope that the next 2 weeks will be temperature free so we can stay at home before another 3 weeks at hospital.
Have a good weekend and see some of you soon.

Round 9 of Chemo Finished

Another week of chemo finished and we are back at home, minus his leg cast and his sling. Yippee! Now I just have to encourage him to get out of the chair and walk! Harry did really well this week. He started his chemo (methotrexate) on Tuesday and his levels were low enough on Friday so that we were able to leave. The chemo is given in a very high dose over 4 hours and the next couple of days is hydration to try and flush the chemo out so that is doesn't destroy certain organs in the body. As usual we had a visit from the doctors as Harry had a positive fluid balance and was a couple of kilo's heavier. Having done this a couple of times now, I said 'don't worry, just about bed time he will start to wee and it will happen all night long!' and I was right. Every hour on the hour and by the morning we were no longer in positive balance. Needless to say I didn't get a lot of sleep!
Harry had an echo test, which is done on a regular basis to check the heart is not being affected by the chemo. He also had a hearing test. Last time we had this done after his operation, the high levels had been slightly affected but Harry did have a cold at this point, so we weren't sure if this was the reason. Anyway they repeated the test and unfortunately his hearing has been slightly affected, but not in the normal speech range. The chemo we have next week is the one that affects the hearing and luckily we only have one more of these, and they might even look to alter the dose before we start.
Next week has a whole heap of tests starting Monday morning with a kidney test. Then in the afternoon he will be having the operation to remove his broviac and insert the port. He is pleased as it means he will be able to swim in a week or so, but wonder if he will get nervous again before the event. Then on Tuesday we start chemo, Wednesday we have a MRT and a CT scan, and Friday we have another meeting with the plastics team.
Professor Wood came in on Friday and saw Harry. He removed the sling and asked them to remove the cast. It was quite funny as he got Harrys arm and pulled it this way and that, and Harry didn't say a word. If Lisa, the physio, had done it, she would probably have got a smack! Anyway Prof Wood came out unharmed, so all ended well. He is allowed to walk on it using the crutch within the boundaries of his comfort. The foot is very stiff after being in a cast for 9 weeks, but hopefully in a couple of weeks it will feel better. When he goes to school we will probably put the arm in a sling, just as it is still pretty delicate and the last thing you want is something to happen now. Mums neighbout Lynn has also lent Harry an air cast which is something he can use and take off as he fancies, and means he doesn't have to sleep with anything on the leg. We just have to encourage him to walk, as it is very awkward using the crutch and after being in the wheelchair for so long he gets tired very quickly. The good news is that they did an x-ray again, and at the top part of the donor bone this looks to be healing which is good news.
We had a double room this week and Harry shared for one night with Nicola who we met on the ward. It is so much better for the kids to share with someone rather than being stuck in a room on their own.
Looking forward to this time next week as it will mean that we have a couple of weeks at home. Enjoy the rest of your weekend and see you soon.

PS Just watching Telethon and then off to bed.

Oh dear - I hope this isn't me!!

I had to share this with you all, as I received this card off my lovely niece Katie!!

So excited see you at 14,000ft!

Vic xx

Home for the weekend - November 5th - 8th

This photo was from the school disco a week ago. Sue B found it highly amusing that on the back of the wheelchair it said PMH and next to it was my ruskis!! So as promised here is the photo Sue!

Well we made it home! Harrys levels were done to .09. This is the methotrexate level in his body. The chemo goes in for four hours at a huge dose and then they spend the next few days trying to flush it out of the system so it doesn't affect the various organs. The level has to be below .1, so really we just made it. This could be because of the fact they did the level very early as they were also testing him for glucose.

Harry had a good night Thursday. We had a nurse that I have seen before but has never looked after us. Her name was Pam and she sounds just like Pam Perry. Harry was asleep when she arrived and woke a couple of times to go for a wee, and the nurse came in. She could have only said a few words, and Harry said 'she sounds like Pam Perry,' and then went back to sleep!

We went to the see plastics, and the room was full of a million people waiting for their appointments. After Harry just having chemo there was no way I was going to sit around in a room full of potential germs, so asked how long the wait would be, as Harry had just finished chemo and didn't want him to catch anything? and we jumped the entire queue and went straight to the front! There has to be some perks of having to go through this awful treatment. We saw Dr Savundra who explained that the screws which are holding the tib and fib together at the ankle area need to have some bone healing because if the screws break from the pressure it will mean anothe operation. Harry had the option to have his cast off but he would literally then only be able to transfer from the bed / seat chair and back again, or keep it on and use the crutch occasionally. He hardly uses the crutch as it is such hard work, but have to keep pushing him as the longer he doesn't use it the worse it will eventually be. We were then sent for another xray and this time there was some sign of healing but not enough for Harry to be able to walk!

We were home by lunchtime and harry and I stayed at home and chilled for a couple of hours before Ellie came out of school. After school we then headed down to the river for a few ruskis and some hot chips. Then we took the kids to McDonalds for tea, and afterwards I ended up going to 'Double Lucky' in leederville with the girls.

I got some lovely new pyjamas which was very sweet of the girls. For those of you who know me, you will often find me in my pyjamas at any time over the weekend. Why get dressed if you are not going anywhere I say. Anyway to say PMH is like a second home would be an understatement, and on Friday morning this was made more apparent when I went to the Kite Cafe on the 4th floor - we stay on the third floor - in my pyjamas! Harry wanted sushi, but I told him there wouldn't be any and 7.45 and I wasn't even dressed! The nurse then came in and we asked her and she thought there would be! So being the good mother that I am, and doing as I am told I went up the cafe in my pj's on the hunt for sushi. As I thought the sushi delivery hadn't arrived and instead we ended up with egg and bacon. Anyway at least next week i will have some nice new pyjamas to go up there in!!

Thanks to everyone who made us dinners this week, and of course to Paula Beck for organising it. Everything has been eaten and nothing wasted. It was so good just not to have to think about food, and know that Ellie was eating good food and not living off polony sandwiches.

Anyway we are back in on Tuesday and will be there till Friday again hopefully, so if anyone wants to pop up then please do.

Ciao for now, Vic x

PS Forgot to mention in my previous that Uncle Johnny also popped into the hospital as well as Aunty Marj who had been in bearing gifts! Don't want him to feel left out at all. I know how disappointed he is that he won't be here for the sky dive, but we will be very grateful for their donation to the cause.

Nearly finished round 8!

Thursday evening, we have had our second methotrexate level done and fingers crossed we should be out of here tomorrow! I wrote some info on Tuesday but I was so tired, I couldn't even think straight. Melbourne Cup was definitely different to last year. We were on the Ward, but luckily got a few bets in on Monday at the Tab and Harry had the winner and I got second and third. Darren also got the trifecta, so all in all we did ok.

Lisa, Harry and Jack came in and bought McDonalds for the kids, and Lisa and I had a very yummy prawn salad with sparkling water for lunch. Little harry had his appointment upstairs and they left Jack with us which kept Harry entertained. Aunty Marj popped in as well, so we had a full house.

Then in the afternoon Darren popped in and I had a walk over to the PMH Foundation and got a receipt book for the donations for the sky dive. Saw Pam Perry who kindly made me a coffee, and I helped her put all the tax receipts into envelopes in return.

Wednesday we were waiting for the surgeon to come in who did Harrys broviac. We would like to change the broviac over to a port and usually they would put it on a different side, but as he still has his arm in a sling they can't do this and therefore she wanted to see Harry. About 6pm and we went down to the Ronald McDonald room for a cup of tea and to fry Harry an egg or two, and it turns out the surgeon had popped in and left before we could say 'we are here!' The latest now is that she is going to book a date?? I thought she wanted to see him, but anyway I suppose we will have to just wait and see what happens. Apparently if it is going to be done then it will be after the ninth chemo but before the tenth chemo. I know it is another operation but it will mean that he can swim and at least shower properly. If it was winter, then we wouldn't even consider it but with the weather warming up then it would be so much better if he was able to swim.

Apparently we have to have an audiology test before the next cisplatin which is on the 16th November, and they did mention that audiology could fit us in at 3.30 tomorrow!! So I quickly said 'no, sorry I have a date with some ruskis, the river and some good friends'. Luckily we popped upstairs and we managed to change it to next week when we will be here as an inpatient anyway.

I have been working on the nurses over the past few days to see who we can get to jump. I am sure there will be a couple of them but the problem is that they have to know what shift they are working. We have had a few more people sign up, so at the moment the first and third jumps are full, and there are only spots left in the middle jump. This is for no other reason than it is mainly the family and a couple of close friends who are jumping in the morning and then in the afternoon Maddies dad and relatives are jumping with a few students from Curtin Uni.

So as I said in a bored moment months ago, I would like to do something different and raise money for Ward 3B. When we told people about the sky dive I have to say there was comments about 'why not sell chocolates?' Well unfortunately chocolates is not something I would do for a number of reasons. One I am always trying not to eat them, and two I try not to let the kids eat them as they need the extra sugar like a hole in the head. We have however come up with something that is a little less frightening and expensive than a sky dive and something that we all need, well the adults anyway. How many times have you gone to an outdoor picnic or to point walter on a Friday afternoon and bought beers that are not twist tops and no-one has a bottle opener? I know it happens a lot as I have certainly been caught a few times! So we have got key ring bottle openers for sale. Great stocking fillers and a bargain price of $5 each. They are in red, green, blue and silver and I am sure they are going to fly out of the house! Hey, if we can sell 1200 gingerbread men, then we can certainly sell 1000 bottle openers. If anyone wants to take 10 or 20 off my hands and sell them in the office I would be most grateful, and you just need to say the word. All proceeds are going to the PMH foundation in conjunction with the Sky Dive.

The next big thing is will they or won't they take the cast off?? Watch out if they don't as we are going to have one grumpy Harry!! The problem is that his right leg is even aching when he walks with the crutch as he hasn't really used it in 8 weeks, so I am going for taking the cast off and get him using it. Then again who am I other than his mother!!!

For those of you who have seen Harry recently you will have noticed that his hair has started to grow back and he does look lovely and like a little kiwi, but if you read this and see him over the next few weeks, please don't mention the hair. It is coming out again, and he was very upset about it this evening. I know it is only hair and it will grow back, but until you are sitting in this situation then really you don't have a clue what it is like for these kids and what they go through. All they want to do is be normal. Not poked and prodded. People constantly asking them how they feel. They want to go to school, not to the PMH classroom where you might be the only child or if the class is busy there might be a couple of you. They want to be at home and be able to do all the things that kids do and enjoy their childhood.

Whilst on the ward this week, a dear family that we have met since being here have had some devastating news. I know there is nothing that I can say or do to help them, but if there was I would do everything within my power to help them. I haven't said anything to Harry as he is pretty sensitive and he will be very upset, but we just have to keep hoping for a miracle. Life is unfair and it can affect anyone of you, so live your life without regrets and treat others as you would want to be treated yourself. My thoughts are with you all. Stay as strong as you can. xx

Anyway happy birthday to myself, Abi and Andrea (PMH school teacher) for tomorrow and Aunty Marj and Helen for Saturday.

Back at the resort!

Well we got through our 2 weeks at home without a temperature and Harry managed to go to school for the whole time which was great. We still have our leg in the cast and our arm in a sling, but we are back to see the plastics people on Friday and hopefully then we will have some idea of when we might be able to walk again.

I have to admit that I didn't have a very good day yesterday. After being at home for a couple of weeks, the weather getting better and then thinking that we had to come back in here today for 3 weeks of treatment for a start, I just wanted to cry and I did! Apparently the surgeon who put in Harrys broviac is coming to see him tomorrow to see if she is going to change the line over to a port which will mean he can go swimming. It does mean another operation and a general but think he would be far happier if he could go in the water, as would I!!

The sky dive seems to be gathering momentum and more people are signing up and getting sponsorship. We need some corporate sponsors as well, so if anyone reading this knows of a company that might be interested then please let us know.

I did have so much to write this evening, but am now particularly tired and will have to maybe do some more writing tomorrow.

Sleep well!