Wednesday, November 5, 2008

Waiting is our life!

As you will know, I haven't posted for quite some time...We have been here, there and everywhere since my last post as it was so busy over the last couple of weeks but in the midst of it all we actually had quite a good time!

We got to have a play with Miss Immie while she was still doing mega-dose and stem cell rescue (what a star). Josh was much impressed with having a friend to play with but insisted on calling Immie "Ethan"?! He hasn't seen Ethan for ages and I think it was a bit of a hearing issue but in the end we did establish that yes, Immie is a girl and yes she is actually called Imogen and not Ethan. As always, great for a laugh! We also headed to Kings Park a couple of times for play in the sunshine as the lovely Michelle and Shell did such a great job of getting him home early! Josh proceded top climb over 12ft to a platform on the rope frame, at one point losing his footing and dangling by his arms 10ft up! He then could not get down so a very nice man came to his (my) rescue. I swear I could have snapped a muscle trying not to scream!

We also took in a Hi5 show, "Playtime" thanks to RMH and got a sneak peek preview of the promotional DVD we were part of. It is so awkward watching yourself on video, especially crying!!! The kids absolutely LOVED Hi5 in spite of the fact that when we did eventually get let in out of the driving rain and our tickets did get sorted out (after 30 min!) Anika did a huge poo in her pants so I had to change it - oh the joy! Their good friends Jack and Leanna also went and were sitting right behind us. Josh sang and danced and yelled his lungs out at the funny bits and Anika was so star-struck she hardly made a sound.

We had a very busy week with running up and down for meds, chemo etc. and although we tried our hardest to push through it, the tiredness was really wearing us down. Nine nights with both kids yelling, hitting and going ape until 11.30pm is NOT my idea of fun. Josh spent one night in absolute agony as the oxycodone wore off before he got to sleep and he refused point blank to admit he was in pain or to take any more meds. Otherwise it was just the usual hell of arguing whose bed each one is sleeping in (ie. both in Mummy's bed but NOT sleeping in the same bed as each the heck am I supposed to work that?!). After spending the whole of the week and the weekend going nuts at them to get to sleep, after a massive day with packing, Hi5 concert, collecting parts for the car and driving 5hrs home they slept!!!! And have been pretty great since. Just goes to show how hard it is for them to adjust to being in Perth. Our oncologist also gave us a bit more accurate estimate of the time she thinks Joshy has left - 8 to 10 months. Not fantastic but his pain is only getting a bit worse at a time not dramatically impacting on what he can do yet so I am happy he will enjoy the time. We have agreed there is no point to pursuing MIBG treatments and he is not able to receive antibodies here for compassionate use and is ineligible to go to America so we are continuing chemo while it is keeping his pain down and the progression at bay with few severe side effects.

Our very biggest news is that we are getting a puppy!!! The absolute joy we felt when the real estate agent told us the owners said yes was just incredible! The kids were beside themselves and Josh knows exactly what he wants; a brown girl dog who is small and gentle and is called Fudge (the same name as his best mate Ty's doggy and when I pointed out it was a little confusing to have two Fudgies, he gave me a withering look and said "Mum I am sure you can deal with it" HE'S 4YRS OLD!!!) So we are in the process of coordinating fencing, the Albany Children's Cancer Care Group (who are paying for the whole shebang! They are beautiful ladies and they have made us all so happy) and hospital visits.

We have had a huge muck-up with getting blood again as although Josh needed it on Tuesday when he had a count done, it got put off til Thursday to give it for some reason. When we noticed his lips going blue and small bruises appearing as we watched, we requested they hurry the hell up!!! Counts went from red cells (haemoglobin) 67 to 42 an all time record low, platelets from 19 to 9 and neutrophils 0.2 to wait for it 0.000 !!! I had no idea you could literally have no neutrophils (the white cells that fight infections) Needless to say they took notice then and wanted to admit him but we resisted and are heading to ARH for blood and platelets tomorrow. If you are going to do something why not do it properly eh? I bloody hope he gets two bags of packed cells as he will need it!!! Josh has also recorded his heaviest weight ever at 18.6kg just on the normal line for his age and maintained it through the cycle of chemo, yay for food!

We had tea with the very lovely and ever entertaining McKenzies last night which was very fun until Pete and Laughton proceded to get drunk and play loud doof doof type music with a lot of four letter words. That got the kids going and they attacked Laughton (I bet he's feeling sore today! Thanks for a wonderful night my lovely Laura!

Too much else to fill you in on all the news, but will endeavour to blog a bit more often in the future...bloody dial-up. Fee puts me to shame with how interesting, regular and creative she is.

Love and sweet dreams,


PS, we have been seeing a lot of rainbows lately which are very important symbols for Josh and I so I am sure he is going to have some very happy days ahead.

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