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My play dough bug!
Cross & Gallagher kids

30/7

Tonight has been the night that I have been writing about 'Tania's Fundraiser', but i've just been flicking through the photo's on my phone and looking back over the holidays. On Friday we had another photo shoot and report done by Rebecca Malcolm, for the "Daily Post' this was with Tania and Tania and Joshua will be in Saturdays paper again. We are really humbled by Tanias efforts, she is the most beautiful person, inside and out.

On friday we also went to Cambridge to see Aunty Kimmi, Ella and Alana. I think Aunty Kimmi should give up Nursing and make jam. She sent us home with a jar and heaps of books for Georgia, but boy that Jam!! super yum. I came home all enthused, as I do when I've been around her. She's making bread, has a fabulous vegie garden, 'Rosters, with photo's for the kids. She had joshua making bugs with homemade playdough, Georgia doing 'mud pies' with Alana, all those things that I forget about, between, kids, hospital and business. I came home all 'earth mothered up' (She worked 35 hours last week as well, I might add.) Mike got the brunt of it, sent outside with the tape measure and ordered to build me a vegie garden by Monday (which of course will take at least another 10 Mondays..) But at least we have a start! He knows how much timber he needs. I think I might send my kids to live with her, she's the 'sensible' to my 'fluffiness'. She reminds me of things I said 6 years ago. I cant remember what I said last week, let alone six years ago!

On Sunday we drove to Whakatane to visit our Starship friends the Edwards family. On the way home we went to the hotpools at Awerkeri. It's so nice to do normal things!   

Yesterday I got a shock to find I have my first 'job interview' since 2007 next week. For PACU here at the Hospital. Thats going to be interesting!

Other than that, I have been painting murals for our Spa Pools, the kids have been helping. Weve been enjoying the sun in our backyard, and today Georgie made some 'Mud Soup'. It was fabulous!

 

25/7

Wow! Today we are 9 months in, and a full calendar month post chemo round date. Two months since the final round went in. Joshua's hair is growing daily, you could almost call it a downy fuzz, but not quite. He's much better, not often sick, tolerating feeding and consistently eating small amounts.

today we went to the optometrist and his eyes are fine. Another win. I don't know if I mentioned it, but a few months ago I met another rotorua family who's sons Medulloblastoma had returned after three years. The mum mentioned they were seeing an biochemist in auckland about a product called sevesterol. We met up again on Wedensday and she said he was in town and he came to see us. He was the most wonderful person and has treated 2000 adults with this product, including his own serious cancer. He is now trialling kids, so Joshua is on it. It's costing us nothing and the results have been very encouraging. One child who had100 tumours, now has just a cluster on his spine. We are one of 7 brain cancer kids so far on the trial.

I have lots more to tell you but I'll leave it for tommorrow... Getting sleepy.

Me and my mate Darcy, visiting the Ronald McDonald retreat here in Rotorua.

17th July

So this is me last three weeks or so, legs... moving. brain, flitting from one thing to the next... house, like a bombsite!... business, very, very busy. But do I get anything done? No. Life has gone back to the frenetic pace that it was once was, Mike and I are 'snippy' at each other at times, because we are both like startled possums staring into the headlights.

But last Friday, Joshua and I trapsed up to the Hospital at 7 in the morning, Joshua had his Hickman line removed. All he has now is his feeding tube, so joy of joys on Sunday we went swimming for the first time since January. And us Rotovegans... we swim all year!

So that was brilliant news! The downside is that he's still not eating, still vommitting and getting sore tummies a lot. Our pediatrician here is worried about him becoming 'tube dependent' and has told us to sit him at the table with the other kids and to put little meals in front of him, but thats not working he just refuses to eat and I dont want to make it a negative or punishment thing.

But we now have eyelashes, eyebrows starting to come and if you look at him in bright sunlight... you can see a shadow on his head. He's going to go to 'fine day kindy' for a few hours a day starting this term, with Emma and Georgia.

So it's all good.... just really, really, busy!

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Annemarie | Reply 25.07.2013 23.30

Thank you Mike from WA for calling today, we were blown away! And thank you for your lovely comments. We are amazed by the support we get from unexpected places

Caroline Andrews | Reply 23.07.2013 07.37

so life is returning to back to usual good family-busy with all its joys and challenges. Hope Josh's tummy improves. And yay! eyelashes!!! Take care oxox

Mike_Perth Western Australia | Reply 18.07.2013 02.40

Great news... improvements happening. Stay strong all of you. Thinking of you and Rotorua often. Busy is sometimes "good"? :)

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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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