Friday, February 27, 2009


It has been such a great week and a half or so for us with a brilliant outing for me going for cocktails with my favourite chicky babe Laura. I had such a great time, it is great to laugh and feel, definately NOT normal with us together...more like back to the crazy way we used to be! Josh spent all bar two days having blood counts taken, or blood or platelet transfusions (platelets got down to 7 this time, VERY low). We had a home visit from the lovely Dr Mildenhall who is looking after Josh after I called Silver Chain when I got concerned at the number and location of his Petichiae (sp?) - little burst blood vessels under the surface of the skin caused by low platelets.
I also have to say how completely proud we are of our baby Anika who is so grown up now! She has toilet trained (flipping finally!) after her beautiful best mate Jasmine showed her how. So easy now she is cooperating and is doing it of her own accord. Another milestone thanks to the lovely Laura is that our beautiful Neeks got to go for her first swimming lesson on Thursday! This is a huge deal for her as she just loves the water and used to go swimming with Peter a lot when Josh and I were in Perth alone or when he was up in clinic but now he is working more she misses out. When Laura asked if Anika would want to go with Jassy I was so excited for her and as you can see from the photos, she was a very happy camper! Many many thanks to Roara and Jas for taking her.
Tomorrow we are having more excitement with a preview of the Monster Truck Madness show that is on tomorrow night. We get to have a look in the trucks tomorrow morning, have a free ticket for the family and Josh can have a ride in one of the trucks as well as a spot close to the ring for our car so he won't get cold in the night and will be protected if it rains. Thank you so much to my awesomw dad for organising this in exchange for his work for them, I know it will be hard to wipe the smile off his face after that!!!
We had a yummy lunch at Dome with my equally yummy mum today who deserves a very big mention for looking after Anika constantly when I need to take Joshy to the hospital, both of them when I need to do non-kid friendly stuff and me when I am tearing my hair out. Mum you are a legend!
Josh has been eating like a champ and has actually put on half a kilo since he started this cycle of chemo which is just unheard of. Not only if he coping better with the chemo, his blood counts are actually the highest they have been at this stage of the cycle and in fact he could actually go ahead with chemo a week early for the next cycle, he is that great! I attribute that 1000% to having chemo in Albany and we just got the nod from the brilliant head of oncology at PMH Cathy Cole to go ahead with chemo in Albany indefinately as she can see no reason for him to go up to Perth with things as they stand! That is huge news and so fantastic for Josh, it just means a whole different lifestyle for us and a much happier and healthier little boy.
We have also been seeing a bit more of my sweet little nephew Seth. He is such a sweet little boy and I am afraid to say that he makes me feel overly clucky. It is so nice for the kids to have a cousin they can see so much of as their other cousins in Busselton are not close to them in age and we don't get to see them that often though it has been more often in the last year.
Lastly, we had a lovely phone call from Josh's OT/fiancee/favourite person ever Ranita. Se is so beautiful, when you talk to her you can actually HEAR her smiling with her voice! It was so nice to hear from her and know she was thinking of us as we have been thinking of her a lot especially lately. Ranita is what we miss most about being in PMH when we are home.
Tam, I had a great time last night poking and prodding you (we weren't making fun of you, honest!).



Love from Us

Thursday, February 19, 2009

Check out this website.

Just a quick post to say if you can, please check out this website of Childrens Neuroblastoma Cancer Foundation on uTube. It may explain one of the many reasons I am so passionate about learning how to fight this insidious disease.
Love to you all, I am off to have cocktails!


Monday, February 16, 2009

Mixed Bag

What a week. The news of the passing of James our special friend and beautiful soul hit me hard this week. I will never forget his compassion for the other kids on the ward or him making a special gingerbread man for Joshy to make him smile. He was, and will live on in our hearts, as a gentle and sweet boy who will be greatly missed.
James's death has really given me a jolt though and I am feeling so guilty for my whinging about being tired and feeling lonely. I would never sleep again if it would mean Vanya, Shane and Liam could have James back. How selfish of me for thinking about how I am feeling when someone else, another precious family has to endure the ultimate loss.
I have also been getting quite angry of late too at the lack of funding, the lack of publicity and the lack of attention paid to childrens cancer. Childrnes cancer kills more kids than AIDS, asthma, Cystic Fibrosis and Muscular Dystrophy COMBINED...think about that for a minute. That is just unbelieveable and so wrong. I need to do something so badly but I am not sure how to go about it...yet. But I will figure it out and make sure people are aware, caring and giving their time and money to find the silver bullet we are so desperate for.
Josh is well and beautiful and as healthy as we can hope for at this point, we are not at the end of this battle and where there is life there is hope. Josh has had his week of chemo and it has all run smoothly excepting an off day on Friday and the odd outburst of wanting to go home (of course). Thanks must go to everyone who ensured Josh's chemo happened here and ran smoothly, it really went perfectly to plan.
All my love

Wednesday, February 11, 2009


I know it is like the mantra of all parents, but I AM SO TIRED!!! Anika has decided she is terrified in her own room and has not given me a full night sleep for over a week. I am so tired! It is amazing how much you can deal with when you get a proper night of rest but just now I feel pretty wired.

We have had a few excursions out fishing from the jetty (Anika and I caught a tiny Trumpeter), to the park, to Tumblejam with Grandma, to our lovely friend Julie's house (though it was very strange with Chloe at school), to Granny's for tea and to Mt Romance sandalwood factory to see Uncle Ben doing his wood turning. The kids hadn't seen Ben working on the lathe before and were mesmerised, probably as much by the enormous dust mask as by the machinery.

Josh and I headed up to the hospital not so bright but very early to start the wonders of chemo in Albany. When we had been there half an hour and Josh was being pre-hydrated we got the news that the chemo was not there..."well where is it then?" I asked poor stressed Jo. But it was a complete mystery so we continued waiting on the premise that the drugs had been misplaced in the hospital or that they hadn't been delivered when the truck came and would arrive shortly. To no avail. After two and a half hours a very well hydrated Josh and I left the hospital to try and enjoy the hot and humid day in the outside world in spite of our frustration.

At 3.30pm I had a call from Jo that the chemo had arrived; not must help at that hour really but I am so grateful for lovely Jo letting me know all was on track for tomorrow. Ho hum, we are used to waiting but I had been psyching myself up and was so anxious for things to go smoothly so we could say to any naysayers at PMH "Look, we did it and it worked perfectly!". That plan went down the crapper but I have to say that everyone has been so wonderful in helping this happen: darling Jo who will spend her weekend alone on the empty ward with us so Josh can have this chemo, Lesley who started the wheels in motion and kept them moving, Lynn for her encouragement and understanding, Felicity for trusting her instincts and being on side, Cathy for taking a gamble and being completely awesomely compassionate and last but certainly not least Suzanne for being the brilliant lady she is and making it all work. Of course there are many people behind the scenes doing leg work for us such as the beautiful David Mildenhall who I just cannot thank enough for everything, Sister Lee and PMH pharmacy for making sure everything is supplied and we all know what is happening. I always wondered how actors/resses had so many people to thank at awards ceremonies (I'm getting my practise in just in case there is a sudden desperate need for Bridget Jones look-alikes in Hollywood).

I am sorry we aren't very available to anyone right now, it isn't because we don't want to see anyone or be there but things are very changeable at the moment and I don't know from one hour to the next what we will be doing. My biggest fear is that once we come out the other side of this and are back into the "normal world" whether we will have anyone left or if we will be standing there alone because everyone else got sick of waiting and us not being there for them and buggered off. I know now everyone probably feels a bit indignant about me saying that like "of course we will stick by them, we are real friends not just in it for the good times!" but you must realise we have lost friends through this as people we thought were true friends drifted away because it was too hard. Yes, our closest frinds are still right here but honestly this is crap and there is only so much of someone elses crap you can take on board and cope with.

Thanks for listening to my pessimistic outburst but if you have made it to the bottom of this update you should be applauded! Thanks for reading and caring, much love and many hours sleep I hope,


Wednesday, February 4, 2009

We have a few bits of great news to share with you all! Firstly Josh's scans...were almost the same!!! This means the chemo is doing it's job and controlling the progression. The report says that there is no disease spread since last scan but the diseased bones are "more MIBG avid in the current study" which means the disease is more dense in his spine, skull, pelvis, legs and arms (everywhere it was before).

Secondly, wait for it, he is able to have chemo in Albany! This is a HUGE deal for him as you know as the travelling is getting painful and missing Fudgey puppy is getting harder on him. On the flip side, we will miss all of you so much so Josh has demanded that we offer if any of you want a holiday in Albany you must stay with us. Soon. Thank you all for your kindness and encouragement, we are not sure if it will be every second cycle of chemo at home or even more but we know how important this is as far as stability, eating, sleeping and everything else goes.

Josh has been really well although with his increasing pain he is now on some heavier medication - Fentanyl patches - which is controlling the pain very well. Other than that, he has had a few off days and one of vomiting but has coped so well as ever and other than not really walking much and sleeping until 11.30 each morning he is back to "normal". His hair started falling out again yesterday and is almost gone now and is really itching him!

Anika is a little miss as usual and has been getting into EVERYTHING! She and Fudge are as thick as thieves and can be found bouncing naked on the trampoline together each morning followed by eating slaters (Fudge) and digging for slaters and collecting them (Anika). She has been loving taking him for walks and swimming at the beach as well as doing all her girly things like dressing up and nail polish. Everywhere we go little old ladies say "isn't she lovely".

Peter and I are fine with Pete getting a bit of work of late which is great for his mental health (and ours!) and gets him back to feeling a bit better about himself. We are getting out and about as much as we can with the kids doing all sorts of things like visiting WhaleWorld, beaches, and the parks. It has been great to see them looking so carefree and not taking life too seriously for a change.

Lastly Fudge our little bundle of love is the best companion, friend and pet we could ever ask for. He is 1000% the right dog for us and is just so happy to see us each and every day. He brings so much love into our house and I can't believe there was a time we did without him. He comforts Josh when he is in pain, offers licks to wake you up and gets along with every single dog or person he comes across. I dare you not to smile when you see his picture, is perfectly epitomises his personality - happy, happy, happy!

Love, hugs and kisses,