First chemo delay

Well what can I say but Harry isn't superman after all. We were due to have chemo today but his neutrophils weren't high enough to start. I didn't think he would go ahead, as he has been quite emotional and also has a sore throat, but you never know as he has been so strong during this whole nightmare.
Last night when I put him to bed, he was very sad about why this had happened and how it wasn't fair that kids were getting cancer. He hasn't been like this since his operation, so it was quite an eye opener for me. When he woke up this morning he was upset again as he didn't want to go to hospital and have anymore chemo.
We started to pack his case and I then realised that we hadn't even unpacked it since he left about 10 days ago. All these things we couldn't find and a packet of mouldy crumpets!! Why is it that after 10 years of being a mother, I am still surprised that children don't think or do things naturally?
Finally we were ready to go, and Ellie went off with Lorraine and Elliot. We got to hospital and had bloods done. After not wanting to go to hospital, Harry was then really upset when he couldn't go ahead. Dr Michaela was great and had a chat with Harry and we are going back on Thursday, so hopefully Harry can go to school on Wednesday. She also looked at his throat and there are no ulcers but the throat is red at the back, so more salt water gargles and panadol at night if his temperature is ok.
I think the thing that disappoints me most is that we might not get to see our favourite Radio Lollipop girls as they are in on a Tuesday, but suppose we will just have to wait and see what happens on Thursday. Such great people giving up their time to entertain the kids on an evening - Radio Lollipops you do a great job!
On the way back we went to Harbour town and Harry got some ASICS, anything to encourage him to walk. We then got back in time for Lorraine to drop ellie off. Paula and Tyler popped in as there were rumours of class lists going up, but not until tomorrow. Nanny Jen then popped in, and Ellie did a couple of dances for us.
The kids then wanted to walk over to school and see if they could see anything.
No lists up, but one of Ellies friends looked in the class and saw her name on a drawer. So using powers of deduction we have now worked out who is in what class. Ellie has the teacher she wants and a few of her friends so hopefully she will settle in and enjoy herself. Reminds me of that show, are you smarter than a fifth grader but in this case they are year ones??
Ellies second tooth came out on the bottom row, so she will be starting school with a gap! Hope that the tooth fairy remembers tonight as she forgot when the first one came out.
So we now have to see what the next couple of days bring. Harry is not well as he was asleep at 8.00 and went to bed early. He has only eaten soup all day as his throat is sore and had a headache when he went to bed. Ellie on the other wouldn't stop talking, and when I asked her if she could be quiet, she said 'mum I was put on this earth to talk!' Well that told me!!
The whole delay has made me realise how lucky we have been that Harry has really been so well during this process. I booked the fridge men to come out today and then changed it till Friday, but now we won't be here then. I had also got an appt. at the doctors to get a referral for Harrys physio when we got out of hospital on Thursday and have now rebooked this till tomorrow. Book club was booked to start next Thursday and depending on what happens on Thursday we could now be doing chemo. So Kylie can't do Thursdays so we changed, but what is the betting that things don't go to plan and we end up in hospital on Tuesday anyway!! Oh well, only 2 more to go and we just have to keep our fingers crossed that Harry has a neutrophil overdose and he can go ahead.
We also haven't been able to see Nanny Pat as she was meant to come over yesterday but wasn't feeling very well. Won't take Harry round there till she is feeling better as don't want him to get anything if Nan isn't well, so hopefully she will better soon.
I have looked a bit more into the skydive and the place in Jurien Bay have said that they will do the same deal and donate $100 for everyone who jumps to Ward 3B. The only problem is that we might have to jump a bit earlier than November as it might be too windy, so it could be September. Getting excited at the thought of it!?!
There is a Ronald McDonald retreat house up in Jurien Bay which we are entitled to book for a week free, and I have booked this for the July holidays so I can take the kids away for a week. 2 holidays already planned for the year, can't wait!! Wooooohooooooooooo!
Hope that all the children get the teacher they want tomorrow and at least a friend or two in their class.
Will be back Thursday to let you know if we have gone ahead. (when i say we I mean harry - but we are doing this journey together!)
xx
PS Excited at the thought that we are near the end as I can get the blog printed into a book! Don't suppose I could turn it into a bestseller?? Wouldn't that be nice. Maybe I could get extras printed and sell them as a fundraiser!! If you want to be a part of the book, make sure you comment on the next few posts!
PPS For any of you who like quiz nights, watch this space as we will be organising one soon.

2 more chemos to go!

Well firstly I should apologise for not having written the blog for a while. Wow, I have just checked and it was two weeks ago. So what has been happening since I last wrote. We finished chemo on Friday 14th, about 9.30 in the morning and came home for Toms last few hours before his flight home. Everything went fine, we had a bit of lunch, picked up Uncle Johns car and were on the way to the airport when we ended up a bit behind schedule!! Maybe Tom has the Aunty Patsy gene as well. Anyway we got to the airport and the plane was delayed by an hour so all was good. It was lovely to have Tom here and be part of the jump, definitely a trip and an event that will hold lots of memories.
The next jump will definitely take place later this year, just need to work out the date as around the time we are planning Ellies dance school also has their performance. So end of October, early November, and we might look at Jurien Bay. Anyone done a skydive up there before?
On the weekend we went to Penguin Island. Haven't been there before, but I will definitely go again and it is a great place to take visitors. Weather was lovely and we saw pelicans, seals, penguins, and an octopus.
Monday we were back in hospital for yet more chemo. Dog also had to go the vet, so dropped Harry and Laura off for his blood test. Took the dog to the vet and then came back again in time to hear all was good to start chemo.
Wednesday afternoon we came out of hospital and then on Thursday we went to the now Pan Pacific hotel for the changing of the name from the Sheraton. Harry was invited from the Foundation and got to cut the ribbon (not the chord, Katie!!) and we had some free champagne, even though Laura had to prove her age!! I asked them if they wanted to check my ID but couldn't convince them.
Took the girls to Kings Park and then headed back to lunch at Nanny and Kong Kongs. Friday was spent chilling round the pool, and then we had friends over for drinks and nibbles. We watched a couple of the skydive videos again, drank a few ruskis and had a nice evening. Ended up quite a late one, and then Saturday morning we had to take the girls to the airport.
It was sad to see them go, and Harry and Ellie will miss them, but hope they will be back again soon.
Did some shopping on the way home, but unfortunately Darren ended up walking into a glass window and was shortly off to Freo for stitches in his eye. How much more time can we spend in hospital in one year??
So our second full week out of hospital since Christmas and I can't believe it is already Friday and we are back in hospital on Monday. Dependent on blood results, of course!
Played golf on Sunday with Dad, Jackie and Roy Brittain at Royal Perth which was nice. The week has gone quickly especially with having Australia Day in the middle. We have got the kids stuff ready for school and all items are labelled. Class lists will be up on Tuesday, but Harry will miss the first couple of days of school, as long as chemo starts on Monday.
Harry had an appt with orthopaedics on Thursday and got the photos of his operation, yes the blood and guts of it all. It was pretty intense, but he wanted to see them so what could I say. Definitely something to show the grandkids! He also had physio today and did an hour of excercising in the pool. They think the foot is sore because of lack of use and we have to do excercises to strengthen things. He can't go again for 2 weeks, as he is in hospital and he wants to go to school on Friday and then point walter in the afternoon. We went down to the river this afternoon and caught up with some of the year 5 parents. Mary and Bazz bought their little surf ski and Harry enjoyed paddling on it and managed to use the arm really well, so might have to look out for a second hand one.
We had Nanny Pat and Aunty Phil round for dinner last night! It is a bit like a comedy scene... neither of them hear what anyone has said and go off talking in completely different tangents. Today we popped round to Nans unit, after physio and had lunch with them. Lunch was nice but filling, and with the leftovers from dinner and lunch Nan and Phil should have enough for dinner tonight. Weather was very hot and uncomfortable, but it might calm down over the next few days with the weather warnings.
Harry is walking more and more, and with the huge treat of going to Club Med Bali in April, we just have to keep pushing him to be mobile. Can't wait to go, but before then it is time to get on a diet. Can't wait for the year that it doesn't start with...... I need to lose some weight.
More chemo, then tests and then Harrys review towards the end of February. So fingers crossed that we get the results that Harry needs to be free of this cancer.
Much love to all. Have a great weekend and hope that the kids are happy with their new classes next week.
VIC xxxxxxxxxxxxxxx
Emily, Rick, Harry, Hudson and Elliot, our thoughts and prayers are with you all. There is nothing that anyone can say, as everything seems so inadequate... but remember every day of your life is a day of your history. Life is a gift. xxxxxxxxxx

Jump for Ward 3B - Awesome

Last minute jumpers




The morning group



Kong Kong, me, Harry and Ellie



15 minutes of training before falling 14000 ft.



The first plane of jumpers



Kong Kong back on the ground safe and sound



As I sit here and write this blog, I am still on a high and want to do it all again. It was a much awaited weekend and all just went too fast! We had a blast, and everyone one of us jumped out of that plane, and even if we are never going to do it again we are pleased that we did it. Friday morning we got out of hospital and then went home to pack and head up to York! We arrived early afternoon and set up our tents and spent the afternoon watching people jumping out of a plane. The night was quite eventful. Harry stayed with Kong Kong, and the two nannies at the cottage they had rented and ellie slept in the tent with us. It was quite cool on the evening and I woke up freezing in the night. Didn't get much sleep as Darren was snoring, the tent was flapping and every now and then I would wake up and think 'I can't jump out of that plane, what am I doing?' Got up early Saturday morning and had a shower and got dressed. Laura wasn't well but thought it was the fact that she had been drinking, but it turned out she had gastro poor love. At 7.30 we were called to do the jump, and the nerves started! Laura, Katie and Tom were the first to jump. When they went to get in that plane, the tears rolled. We were here to Jump for Ward 3B and what seemed like a dream was turning into reality! Dad and I were third to jump, and it was amazing. The whole experience was surreal, after many nights of watching the you tube videos, I was in that plane. The time came to sit on the edge of that plane and fall. Yes fall, 220 km's per hour from 14,000 ft to 5,000 ft before the parachute opened! It was an amazing experience and one I will definitely do again as it went so quick. I also now know what to expect, but will definitely be on a diet and then see if my cheeks don't wobble as much! The instructor was great, camera man was fab and I have already watched the video 20 times and still can't believe we did it. I did throw up when I was back on ground, but after that I had a powerade and all was good. The day was full of cheers and celebrations, and everyone seemed to have a great time.
We ended up with 33 people who jumped as a few decided on the day that they didn't want to miss out on the excitement and that they also wanted to throw themselves out of a plane! Skydive Express were brilliant and I would highly recommend them if you wanted to do a sky dive. The instructors were great. The facilities were brilliant and Toots cafe served up fantastic food. So all in all it was a great weekend, with lots of laughs, lots of tears and definitely lots of beers! We camped again on Saturday night and then on Sunday we headed back to Perth. Thanks to Emma Pickles who flew over from Adelaide to join us and also to Laura, Katie and Tom who came over from the UK. To everyone who joined us, we hope you had as much fun as we did and it is great that whilst having fun we managed to raise so much money. The total is increasing everyday and when we have finalised the amount I will let you know what it is. On Saturday night the kids wanted to sleep in the bunk room. I stayed with Ellie and Harry as Darren was asleep in the tent. About 2.30 Ellie started to moan and groan and then she shouts out in her sleep 'I just want to sky dive', to which the bunkroom cracked up laughing! We arrived home on Sunday and after being at home for about an hour, the phone rings! It's Dad! 'Vic, I know what we are doing for your 40th! We are going to jump out of a plane on our own!' So we have nearly two years till this time and between now and then I am going to do another tandem - November 5th 2011, for anyone who wants to join me, and then I will decide. If you haven't donated and want to, then please feel free as we are still collecting for the next few weeks.

2 sleeps till the jump and Chemo 14 nearly finished!

What a week. Thomas arrived, the girls are here, and the jump is now 2 sleeps away. Harry has done another round of chemo and finished treatment 14 (well nearly!)He has done really well and had less sickness drugs than normal. Maybe it has been the constant stream of visitors that has taken his mind off things.

We have been very productive this week and the fundraising total is now over $50,000.
We have been door knocking along Wichmann Road, which was an experience in itself. Pommy Deb came over with Sienna and Jack and off we went. They say only mad dogs and englishmen go out in the mid-day sun, well this is definitely true here. 2 mad mothers, one child in a wheelchair, 2 on scooters and one on a bike she can hardly ride. We got to three houses and the kids had filled up their water bottles 3 times, but we did raise $300 dollars and sold a couple of bottles and key rings.

The nurses have been very supportive on the ward and bought the stainless steel water bottles, t-shirts and bottle opener key rings. We also went to some of the other wards who purchased our goods today.

I really am not sure how I am feeling about this jump. It seems a bit unreal and I really can't imagine falling out of a plane from 14,000 feet and just hope that I have the courage to do it on the day. Then again I think there would be 29 people right behind me waiting to push me out!!

Thanks to everyone who has donated and purchased our fundraising bottles and bottle openers. Lets hope it is a weekend full of fun and laughs, and a celebration of life.

PS Sorry to Romina as you don't like the orange t-shirts, but promise that when you join the jump next time you can pick the colours!! Did I say next time???????????????????

Nanny Pat has a sleepover on the 1/1/2011

Well we started the new year very quietly and for the first time in a while there was no hangover or mess to clear up in the house which was nice. Harry fell asleep at about 10.45 and Ellie shortly after.
New Years day was started with bacon, sausage and eggs and champagne, then some swimming and a few friends popped round. Then we went to Nanny and Kong Kongs for dinner.
Nanny Pat came back with us and had a sleep over. We sat up talking till about 1am and then went off to get some sleep before the kids woke up.
The morning started off slowly and we had a swim with the kids in the pool. We got dressed and later on in the afternoon went down to Point Walter for a walk around.
Thomas rang and he was just about to board the plane, so the first of our English sky divers is on the way over. The girls - Katie and Laura - then leave tomorrow.
Tuesday we are back in hospital and Harry will be having more chemo depending on his blood counts. I haven't told him the girls arrive Tuesday as he will be very disappointed that he might be in hospital.
His temperature has been going up and down but luckily hasn't gone over 38 so we haven't had to go into hospital. Just keep your fingers crossed that he is not in next weekend as I can't imagine what will happen if he can't come and watch us all sky dive.

The jump is only now 6 days away. The stainless steel water bottles have arrived and the t-shirts are here, so now we just need to sell them to increase the fundraising total.

If anyone wants to donate then they can either go onto the website http://www.myfundraiser.com.au/myevent/jump4ward3b

or you can transfer the money directly to the fundraising account :

Bankwest
Account no. 0409051
Sort code: 306 075

If you transfer the money directly then please let me know so I can arrange for a tax receipt for you, and email me at vic@suremigration.com

Also if anyone has any contacts in the media then please send me their details, so we can try and get some extra publicity. 30 people jumping out a plane and paying $429 each for the pleasure of scaring themselves half to death and raising money for the children in Perth who are living with cancer on Ward 3B. My email is vic@suremigration.com

Take care and have a great week.

PS Elise - Harry got an IPAD and I don't think he has put it down yet!!

Happy New year to all my friends and family

As the end of 2010 draws to an end, I know there are many families who are out there that are hoping that 2011 is going to be a bigger and better year for them, filled with lots of love and happiness, and I would like to wish you all the best for the coming year.
It is hard to believe that this time last year we were waiting for people to come round and celebrate the new year without a care in the world and this year, we are just hoping that Harrys temperature doesn’t go up and we end up at PMH with the worry of an infection.
The year has been a very big learning curve for all of us. I thought breaking my jaw was bad, but then having your 9 year old son diagnosed with Osteosarcoma, months of chemo and an operation to remove his shoulder joint was something that I had never thought would happen. I remember saying to dad ‘ I just want someone to say “Sorry this isn’t your life we got the tapes mixed up” but no such luck.
Harry has been a tremendously brave boy and has grown a lot as a person in the last 6 months as a result of what has happened. He wants to never talk about the treatment when it is all over, but I am sure that there will be more emotional roller coaster rides in the future, but he will deal with it and continue to grow.
I have been meaning to write this for ages, but always forget. When we were first told about Harry we were given a book about childhood cancer. I was reading it the one day and came across a chapter on what to say and what not to say, and thought it was quite appropriate.
What to say when a friends child has been diagnosed with cancer :
I am so sorry.
I didn’t call you earlier because I didn’t know what to say.
Things that really don’t help :
God only gives people what they can handle. – I remember thinking at first it was because Harry is strong, but after a while you do begin to doubt who is up there watching over us as why do so many children have to go through this.
You are so brave or so strong – well we are not, you just have to get on with it and cope the best you can.
I know how you feel – well unless you have a child with cancer, then I doubt it.
Also don’t say ‘let us know if there is anything we can do to help.’ It is far better to make a suggestion. Trying to organise the change in your life is hard enough, without then having to go to people and ask for favours.
The one thing I have hated is friends that have ignored me. I do understand that you don’t always know what to say and before I was in this position I would have fallen into that category, but you feel alienated enough without people crossing the street or just not talking.

Anyway a week today and we will be in York and getting for the sky dive. So if it is not the last thing you do in 2010, then make it the first thing you do in 2011 and donate to the sky dive. 30 people jumping out of a plane from 14,000 ft and paying $429 each to raise money for the children in Perth who are living with cancer. So please make it worth our while and donate, every little helps and a lot is always a great gesture as well.
Heres to a better 2011. My new years resolutions are :
1. To make it through the sky dive.
2. To be a better judge of character. I want to be the one who says I never trusted him/her/them rather than the one who says ‘I thought they were ok’ when they turn out to be complete moles.
3. To lose all the weight I have put on whilst sitting around PMH waiting for a better meal to come along but eating them all just incase.

They so say people come into your life for a reason, a season or a lifetime. Well to those who are in this for the long haul, I love you, and for those of you who have turned out to be seasons, thank god that the season has changed!!

To all my family and friends who have supported me throughout the last 6 or so months, I love you all and am very grateful for everything you have done.

Christmas has been and gone!

The family with Dad

The family with Darren

Wow, what a great present!

Ben, Harry, James and Ellie


The gingebread house.

Home late on Wednesday night and then running around on Thursday getting the last minute bits and pieces done. Dragged Aunty Sue to about 4 shops and I should have just bought what I was looking for in the first shop. Friday we spent the day tidying as we had a few friends round for Christmas drinks and finally got to bed at 1.30 in the morning.

Christmas morning, Harry first came in at 5.30 and I said back to bed, which he did but I thought at this point it was 6.30. So when ellie woke shortly after I then realised it was only 6.30 at this point. We didn't make the beach this time, but went to the civic centre and met up with all the family and had a lovely breakfast. Harry and Ellie opened a few presents in the morning and then opened the main ones when we got back from breakfast. We had a short swim stop in the middle, and then finished off opening the presents.

Nanny Jen, Kong Kong, Nanny Pat and Sarah popped over about 5 and then the kids had more presents to open. Harry finally got his surprise present and was over the moon, as you can see from the pics. Ellie also got baby alive which she was really chuffed with.

Boxing day was spent having a quiet drink, and a case of ruskis later (and the rest) we got to bed about 3am. Kids had another late night and a swim at 11pm, and am sure we will pay for it tomorrow!

Hope you all had a lovely christmas!