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.
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