Normality.....

Joshua and spiderbear 19/11/12

Sorry I'm upside down, Joshua and Daniel 17/11/12.

Joshua gets his first special bead for his drain coming out.

The 'bad day shoes'

Do I look good in butterflies?

Joshua driving the physio Peugeot 21/11/12

Three amigos!

Joshua walks 27/11/12

Stem cell harvest 28/11/12

Well... we had three and a half days of a treatment free Joshua and it was awesome! On Friday we went to Sylvia Park and it was fabulous, going there and taking our beautiful son with us. The kids each got a toy, Joshua got a special bear from the teddy factory which of course has a spiderman costume and has been called 'spiderbear'.

We also got him out yesterday afternoon to his cousin Lanis first birthday. He hung in there for an hour and a half which I thought was very good considering. It was great to see extended family, my cousin Scott and his wife Catherine, my Aunty Mary and Uncle Alex. If theres one good thing I can say for something 'tragic' like this, is that it brings family together. You always think about 'making the effort', but it never happens, we are all so caught up in 'our bubbles' that it's hard to see out of them.

Joshua's behaviour is improving dramatically, it's been hard, because although he's really sick and you will do anything to make him happy, he is still a 'son' and a 'brother' and a 'grandchild' and this means that he still needs to function as such. my latest catch-cry is; 'Joshua, we know you are sick, but you are still part of this family, so please don't..... hit your sister, not share the ipad, throw your food at me!" the other morning, he asked for porridge, which I dutifully made, then dismissed it when it arrived. He threw such a hissyfit I wheeled him outside in his pushchair and left him to it for five minutes. He got over himself very quickly. As a Mum it's tough, the other kids know he's getting special treatment, but they don't have the 'concept' of his illness.

Grandad looks at me with dissaproval one night, because I relent to Daniels nagging and take the coveted 'ipad' off Joshua who then howels with mortal dissaproval.Dad tich, tich's me "He was so happy!" he said. "But Dad, he's had it all day! Daniels got to be allowed a go at sometime!" Its hard going, keeping the peace.

The other issue that we are still having is 'people'. Joshua just doesn't want them around. My super outgoing son has gone shy, very shy. We have two Joshua's, the one that nods and shakes his head when he's spoken too, hides in my chest or hides in his blanket and the Joshua that we see, that engages and smiles and can be subjected to tickles.

We also unfortunately at the end of this weekend said goodbye to Nana, which was really hard. She was here with us for 24 days, kept us all afloat. She's been my backbone, my Mum.

Well onwards and Upwards... this morning (Monday) we became 'cancer patients' and we are into stage 2, so far Joshua has had:

20 days in hospital
2 operations
15 'blood tests'
6 MRI/CTs
1 lumbar puncture
23 Therapy sessions
2 stitches in his head without local
2 drains removed
1 catheter removed
6 IV lines
79 procedures in total.

And it's just the beginning.

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lois and allan | Reply 25.01.2013 21.02

our hearts go out to you all yes spoil him we have been through it ourselves with our first born son love and understanding from lois and allan in rotorua

Jan Newman | Reply 30.11.2012 16.51

Jill Taylor works with me and she showed me this site. Been thinking about you guys heaps. Hope everything is going in the right direction. Hi to Mike.

Jan Newma | Reply 21.11.2012 20.09

Hi Annemarie and Mike. Following your journey here. My heart goes out to you all. Thank you for sharing - you write so well. Love from Jan Newman

Annemarie 30.11.2012 16.42

Hi Jan, wow, how did you hear... Word gets around! Thanks for your lovely comments.

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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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