Home!

Riding on Lens motorbike with Dad.
Joshua, Franci, Daniel, Georgia, and Harry, outside the Argent.
Claudia, Am, Lynne, Kerry, Joye and Becs (missing, Aunty Clare)
Gorgeous Aunty Bex.
Mummy's big night out in Hamilton.

Last night in Rotorua

How time flies! our five weeks has nearly gone and tonight, I sit here with the bags packed around me, ready to depart for Auckland again. It's been a really strange time being home, it's just been so different. Firstly, Joshua was unwell the entire time. He's improved just over the past five days or so, but until then it was a really rough trot, with him vommitting everyday, losing his feeding tube, me having to put back down, me crying outside everytime I had to put it back down, Mike had a day where he was miserable as well.

By last Wedensday, I'd had enough, we went to Hospital. I knew it would result in blood tests and scans, which it did. Joshua had his most traumatic blood test ever, a poor nervous House Officer, who I think was quite traumatised by the whole affair, did her best, but when Joshua really decides he's not going to have something, it gets really rough!. By the time we left ED, I wished we'd just driven the three hours back to Auckland, but once we were on the ward they were so lovely. They even let Daniel sleep over, which was great for Joshua.

On Thursday Joshua had a scan, which didn't show any swelling, so the concensus, was just to truck on. The radiotherapy is still obviously doing its thing, which is good, but my rosey veiw of Joshua running along the beach full of energy and eating like a horse, just wasn't to be. We did get to the lake four times, but only the first time was really fun for Joshua, the other three times he was pretty miserable, hung out on my knee or sat under a towel in the sand. We were going to meet friends out there on Sunday (Joe and Monique), but we went to the market in the morning, we did our usual thing, mucked around to long getting ready and by the time we got out there, he was already past it. He had a massive hissy fit and had to go home to bed for three hours. So poor Joe and Monique were driving home as we were going out to the lake! sorry guys.

But since Sunday, things have improved. Joshua threw up for the last time at 4.30 in the morning on Tuesday. He's also turned into 'Mr Brave' about his 'tubie'.  He just lies back and lets me put it down, which is just wonderful, for him and for me. We developed a thing called the 'treatbox' not long after we got home, which is full of toys, particularly 'Ninjago' lego, which is the boys favorite. We now have made a really cool 'treatbox' which all the kids decorated. So when he has to have his 'tubie', we blindfold him afterwards and he gets to choose something from his 'treatbox'. So it's just been hugely positive for us.

The house is lovely... it's a real home. I've loved having the time to make it mine. it's an iconic house in this town, everyone knows it and I'm so proud telling people we own it. The boys have sat out on the front lawn driving their trucks through the dirt, Mum spent a whole day detangling the garden, it's all ready for me to have some fun with, when I get home. I've loved sleeping in my bed, with Millie the Kat purring on my shoulder. I've loved opening my beautiful 'villa' windows in the mornings. The only thing I havn't loved...is the flies. You'd swear we were living in a giant cow pat, there were so many.

So, having a child with cancer, you want to tackle things organically. So to start with, I had the 'chemical free' flyspray, which smelt like deepheat. I think some of the flies left because they didn't like the smell, but only a few dozen. So after that, I went for the 'sticky, hanging things', but again, they did reduce the number, but only by about fifty, over two days.

Then Mother arrived. We took to counting them on the ceiling at night. Mother took to spraying the house with 'non-organic' flyspray at night, when the patient was asleep in his room. She emptied a whole can, we've all probably got cancer now, but the flies were still bonking on my kitchen bench.

So finally I relented, went to the supermarket and bought four automated fly zappers, with odourless poison. I figure that by the time Joshua has had four months of round-up, pumped into him intravenously a little flyspray isn't going to hurt. It's always the pay off between two evils anyway, the dirty flyfeet or the poisonous spray, have declared war on flyfeet and won.

Mike has had an incredibly busy time getting the 'old house' finished. It is now our beautiful unit 16 and is just gorgeous. Patrick and Kathy our managers have done a sterling job, have put up with alot and we are so pleased to have them. They are on the job now until June. We've employed them to the end of Joshua's treatment.

Daniel has been back a school but is now about to go again, all the kids are looking forward to going back to Auckland, i'm really looking forward to being back amongst my support network. Being home has been isolating, you feel secure when your with others like yourself. Particularly me, i'm a talker! I dont want people to 'invite me over', I can't go, I have a sick child, but I love it when people call in and give me their time. All I need is a listening ear, it makes all the difference.

Right team, see you in Auckland, we arrive on Tuesday. Wednesday, Thursday and Friday are busy with tests, them Chemo Starts on Sunday night.

At least Daniel is allowed to sleep over!
Rats, we've been admitted.
Rotorua hospital, Waitangi Day.

5/02/12

We have been home for two and a half weeks now, half way through our home leave! Its been a little of a deflating ride for Mike and I, my heart is permanently sore. Joshua is just still not well, he is vommitting everyday, vommitted last night, vommitted this morning, the antiemetics just don't seem to be holding him and then everytime he pukes he loses his feeding tube which I then have to put back down. He's still not eating at all, but has gained some weight with the feeding.

We are trying to get out and about, we go to Lake Tarawera at least twice a week, Joshua gets in the water and splashes about in his wetsuit, Daniel is leaping off the jetty. Ted leaps off the jetty, this is my happy place. Georgie has to be watched like a hawk because she was born missing a 'fear' and 'self protection' gene and throws herself into the water with wild abandon, face first at times. She's a dag to watch.

Because we've been away for three months, we've also had lots of catching up to do, health wise and 'grooming-wise' Teds getting poncied up today, befor he goes to Nanas again, Mum's getting poncied at the hair dressers.

Yesterday was 'prickle' day, first of all I had to have a blood test, Joshua came with me for moral support... he was so funny, he held my hand and said 'breathe in, breathe out, breathe in, breathe out, breathe in...." he said it so much, I think he was forgetting to breathe! on the way home he was very quiet, I asked him what was wrong and he said 'I didn't like you getting a prickle, Mummy"  I think he was worried I was sick. I said 'Mummys not sick darling, she's just having a check up'.

In the afternoon Daniel and Georgia had 'prickles' chickenpox vaccinations. Georgie went 'ooh' when she had hers and then played with her dolly.

With Daniel, Mike asked how it was when we got home. I replied, 'has the blood flow stopped yet?' he said 'why?'' I said, 'Ithink the Nurse must of taken his arm off with a hacksaw!" but thats our Daniel, gotta love him.

On the swing
Summer fun at the lake

Well it is so nice to be back in Vegas! We had a quite tearful farewell from Radiotherapy last Friday, it was hard saying goodbye to Jigga, Ros and Bruce, who have all contributed to our lives, with their warmth, thier knowledge and their friendship. Joshua found it really hard for the first three days, couldn't really understand why we just couldn't get in the car and go and see Jignesh, but we have written letters which he'll get soon!

Our final morning we had breakfast on level 3 with Chrissy, Alan, Clare and Craig. Chrissy is the 'manager' of the family room and I first met her the day after surgery. We reminisced about the journey so far, how far we have come as a family, from those early horriffic days. We then visited ward 26a, we saw everyone who had been a part of Joshuas team, apart from Andrew Law himself, in the last week, so it was really nice.

So we came home! I yelled all the way down Fenton street.

First thing the boys did was go in the spa for an hour, Dion and Susanne watched them. Joshua unfortunately lost his feeding tube on Friday night, it wasnt his fault, it blocked with chicken and I thought it had dislodged. So we've gone without, hoping his appetite would pick up, but no signs as of yet, so I think it'll be back down soon.

Since then i've been getting the house sorted.. lot's of visitors which is great. I miss my friends, the kids miss their friends, so it's really great. Some people have been tearful, most have celebrated with us, but i've been really happy to see them all. it's all support at the end of the day!

The kids are having a ball, we have a new aid against Joshua's moods.... Ted. When Joshua throws a tanty (and they are deminishing by the day.) Ted is in there cause he thinks it's a game and soon Joshua is laughing and rolling around with him. It's lovely. I'm loving having my cat back, loving watching the kids with all this space, in and out of their paddling pool, hoofing around on their bikes. Summer has arrived at last!  

Stage 2 complete. 85 beads.
Spidey oversees Joshua sleep.
Doggy therapy
Kisses for Ted.
Ted and Joshua
Joshua and his best mate James first day home

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Davies family | Reply 18.02.2013 22.37

Hey team, don't worry about our lake date, we'll look forward to many more in the years to come! You're in our hearts and minds, will try to catch up soon

Fay Henderson | Reply 16.02.2013 09.12

Hi there guys, sorry we hav'nt been able to see you while you were home but you are always in our thoughts. We wish you well with the Chemo etc
God Bless xxxxxx

Clare Gallagher | Reply 12.02.2013 10.10

Cant wait to see you all on the weekend ! Cxxxx

Fay Henderson | Reply 09.02.2013 21.54

I have just caught up with your latest blog. Everyone at Church asks how you all are so I will fill them in tomorrow morning. Lots of Love to you all xx Fay

Susanna Olivier | Reply 09.02.2013 00.45

Hi guys, Just to say, I'm thinking of you and keeping you in my prayers. May God bless you and heal Joshua completely. Love Susanna

Catherine Straw | Reply 04.02.2013 22.26

Lots of love to you all. Mum told me about this sight tonight. Will keep in touch. Love to you all Wayne & Catherine

Cate | Reply 28.01.2013 14.52

Warmed my heart to see this blog post today! xx

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Latest comments

13.07 | 21:33

Hi Anne-Marie - I found out about all this following a link someone liked on FB. I think of you all often. You brightened my life xxxxxx to you all.

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04.06 | 18:38

That was and amazing story so pleased you are all doing well Kind Regards Sandra Rohrlach

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08.03 | 17:48

Well done to all. Annemarie I did send a friends request on FB for "Josh updates" a couple of days ago(Mike Wish) but no reply.
Cheers to all from WA

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25.09 | 20:01

We are staying at CCF Arrowtown, and we read about your family in the guestbook. You can read about our medullo journey at www.rorygardiner.co.nz. xox

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