Gearing up for Chemo

Over the last week Josh has still been feeling...pretty crap. Not exactly fantastic stuff considering he was due to start chemo again on this Monday. His haemoglobin has been hovering at 91 where it still is (normal is 115 to 145) so too low for a transfusion but just low enough for the nausea and lethargy to hit. Still on the same pain meds but has complained off and on about leg/ankle and rib pain though not too severe.

I put my shoulder and back out badly - again, *groan*.

This week we have hung out at Grannys and Grandmas and had a special outing on Tuesday. We went to visit Granny at work and had a very yummy lunch at the tearooms where it was nice and quiet so the kids had a walk in the gardens with Gran. They had been asking to go there for ages so it was the perfect excuse. Grandma booked a ride on a horse drawn wagon through a vineyard with a stop for tea and damper and a historic commentary on the history of the area. The kids loved the excitement and the horse, I loved the wine tasting but we did not love the bloody heat that day!!! It was really nice and laid back and I realised how much I miss being around horses ie. a LOT.

I cut all my hair off on the weekend and dyed it bright purple (serves Peter right for leaving me on my own most of the night!) for something different. It made my arms ache like mad cutting the back and as a result it is a lot longer than I intended and quite uneven!

I had a great night at Laura's last night at the non-Nutrimetics party (it never eventuated as the hostess was sick) so we played Pictionary - Laura and I kicked butt again - and talked. Thanks chicken for being the best friend I could ask for and always listening. For those who don't know, yesterday was just a generally crap day with cleaning, washing, shopping, blah blah blah. The photo I was sent while I limped down the grocery isles with my bloody decrepit sore back of Immie celebrating the end of her scan made me smile tho, thanks Fee, miss you guys. XXX Please pray for great scan results for Immie and a smooth pregnancy for Fee. I am so excited for them!

Check out Nurse Rochelle's Shave For the Kids blog. http://shaveforthekids.blogspot.com/ What a superstar! She isn't just a brilliant nurse and all round great chick, she also shaved her head to raise money to buy a new feed pump and pulse oximeter for the ward. What a sweetheart. I have visited her blog a few times and messaged and it is nice to be able to keep a link to the people up there we care about when we are so far away!

Love, hugs and sloppy Fudgey kisses,

Hannah

Monster Trucks!!!

We had such a fantastic time at the monster trucks! Josh ate like he'd never seen food before, ran around like mad and laughed and cheered the whole night.

At the end of the racing and truck section, the guy who runs it, Clive, actually came over and gave Josh his own brand new racing helmet! As you can imagine, Josh was beside himself and hasn't let it out of his sight yet. The generosity of these people is amazing, they gave the kids the best seats in the house, posters, toys, hats, flags, DVDs and of course the incredible helmet. The kids also got to see fireworks for the first time. It was a night they will never forget and so well done. Thank you so much to everyone involved and also to Poppy for organising this very special treat!

Love,

Hannah

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Yahoo!!!

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 normal...no, 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!).

HAPPY BIRTHDAY TO JOSHY'S BESTEST MATE TY!!!

HAPPY 5TH BIRTHDAY TY MACHINE!!!

Love from Us

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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. http://www.youtube.com/cncf2007
Love to you all, I am off to have cocktails!

Hannah
XXX

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
Hannah

Yawn!

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,



Hannah

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,

Hannah

Finally, an update!

Well, the last few weeks have been a real mixed bag!!! After a fantastic and very chilled-out christmas, and Peter's 40th birthday (which was pretty quiet - at his request), we headed off to Denmark camping. The kids hadn't been before and had an absolute ball. We didn't do camping in the traditional sense of sand, no power or water (or loos) but had a very civilised trip to Ocean Beach Caravan Park with nice grassed sites, new toilet and shower block and a luxury caravan to live out of! Oh yes, my style of camping! Thanks so much to Danny and Brayden for bringing the tent, caravan, shade, BBQ...almost everything we could need, it was absolutely what we needed. Each night the "boys" - all over 12 - went out fishing and I put the kids to bed in the caravan and sat about drinking wine and reading to my hearts content, heaven!

We had a brilliant visit from the amazing Miss Immie, Fee and Kody (see the picture above of the girls cooking and adding the special secret ingrediant...mmm, finger lickin' good!) and it was great to see them out of the hospital environment. We really haven't seen anyone outside the hospital or RMH other than Jack and Leanna at Hi5 which is a shame, we just don't really have anyone wanting to go out and about with us out of our hospital friends, or maybe it's just bad timing or distance.

After getting home, Peter did a bit of work to Danny's car while I ran around unpacking and repacking for Perth! We got home Thursday and left for Perth Sunday morning so it was a big rush. We dropped Aaron off in Williams on the way up and got to RMH early evening to settle in. Then...all hell broke loose once we tried to get the kids to bed. After two nights of that, Peter and Anika headed home on the bus and left us to it. Josh handled the chemo pretty well but spent one night dry retching as his tummy was empty. All considered, he did very well though with not too many tears and getting to see his lovely Ranita, CK friends Ryan, Liam and Sinead and getting to meet one of the "new kids" on the ward Mahmood. The girls at the house as usual were brilliant and Alison cheered him up with her regular hellos. On Thursday beautiful Lara Peter's cousin came to visit, Grampy made a couple of nice appearances (to feed us!). We also saw Laura, Jason and our little mate Damon who loved playing horsey races with me. It was good to see them and I got to see the beautiful pictures they have taken of their perfect little girl Savanna, born silent and taken too soon. Love and strength to you every minute of the day guys.

On Thursday afternoon we had a very nice surprise visit from Nick O'Hern the world famour golfer. He is such a lovely guy and Josh was very impressed with him after meeting him at RMH last year when he was making a very sizeable donation to them. After getting out christmas card (Josh asked to make him one) he called the house and asked to come and see us so up he came with Alison into Same Day Care to see Joshy and present him with a lovely card, one of his specially made PGA hats and a signed picture which says "To Josh, Forever my friend, Love Nick O'Hern". Such a friendly guy and so kind, even being great about the fact Josh paid no attention to him inspite of him travelling quite a way to see him as he was just so sapced out from the pain meds and totally shattered after the days chemo. Home on Saturday.

This week we travelled up again on Monday arvo and had dye for MIBG scan injected FINALLY at 6.25pm after arriving at 8.30am for our canula and 9.00am injection appointment. We waited and waited...after getting some blood and finding Josh was already neutropenic we headed "home" -to RMH- for a break at 5.30pm as Josh was getting a bit distressed and had just

fallen asleep. So much for not wasting the day and heading to the zoo for some fun! The scan booked for the next day happened almost as scheduled and Josh took ages to get over the GA (he gets very emotional and sooky) and later got some platelets so we were good to go. Left the hospital at 6.00 and packed to go home as the poor boy just wanted his puppy and his own bed. Arrived home at 11.45pm last night and he has really perked up now! Back to clinic in Albany in the morning for a blood count before the long weekend.

If you Pray, please pray for Josh, if you use reiki, send a little our way or if you use positive energy, angels or rainbows, we'll take any you've got, waiting for these scan results is always agony, this time I think I know what they will be but hope with every fibre in my body I am wrong. Love to you all,

Hannah

Christmas Eve!

It's one sleep til christmas and the kids are SOOOOOOOOOOOOO excited! I have to admit I am too although, once again, it will be tinged with sadness as it will be Josh's last. I have to say what an amazing few weeks Josh has had though!

First there was the Variety Skywest Joyflight on 14th which was such a ball (check out the photo of Josh schmoozing with Santa!) and all the kids were really well behaved. During the hour long flight we saw incredible scenery along the southern coastline from Albany to Walpole and back whilst Santa mingled, the flight crew served cool drinks and chockies and brought around colouring books. Josh decided he needed to sit with Santa on the descent as he was in the seat right behind us.

I had a christmas party for my old work at TAFE which was also great fun with the surprise gift of a very nice cheque for us from all of the staff members who donated money to us through Rotary East Albany. Thank you all so much. It was great to catch up with them all too, they are such fantastic people collectively and individually.

We also had a fantastic time with a ride on a Harley trike in to Carols By Candlelight for Josh with Santa thanks to Apex. You guys are legends, Josh loved the experience although he was a bit sore by the end of procedings.

We have had several bits in the paper (advertiser Extra last Thursday, Tuesdays Advertiser and on WIN news allegedly last night but hopefully tonight) thanks guys and Rachael in particular for giving us the opportunity to raise community awareness and thank everyone who has helped us on this rocky road. I have to mention our friends Tammy, Martin, Alex and Phillip who we haven't seen now for two years dropped off a fantastic present of some money this week after seeing Josh in the paper. They are so kind and although we are not starving, we are considering taking Josh over to Queensland again as he asks day in and day out to go again and this will go a long way toward helping that so thanks guys. Thanks also to Mira Mar Vets and Greg Kidd for offering to treat our little poochy for free. I did work experience with Greg years ago and he is a great bloke and really wanted to help. What a star.

We had a great time at our friend Annie's daughted Takiya's birthday party on the weekend. Great food, nice weather, a park, a great group of kids and birthday cake - what more could you want?! The kids were rapt to be there as they haven't been to too many birthday parties and they met some other kids to have fun with. There was even a bouncy castle, Annie did an awesome job of playing hostess, it was really nice to be there.

Yesterday we had a great day out with the lovely McKenzies who took us to the Alpaca Farm for Josh's birthday present. We actually saw an alpaca giving birth while we were there! The mum seemed completely unfazed, just standing there eating and getting pats with a huge calf hanging our of her! The kids all had so much fun running amok and being wild with all the animals then heading to Bartholemews Meadery for a honey icecream and a look at the bees. It's one of Josh's favourite places to go, he just loves seeing the bees making honey in the encased honeycomb window there, I have to say it IS mesmerising. We then went to their place for a spot of fourwheeler action and I think it was as much fun for Laughton and Laura as the kids! Thanks for an amazing day, we love spending time with you!

Josh had first go on the kids present last night- a new trampoline- and he loved it. They have bounced the thing to death already!!! We are looking forward to a great laid back christmas with a quick stop off at the kids ward in the morning for me to deliver turkey, salad and apple berry crumble to the amazing nurses for christmas lunch. We are then heading to mum and dad's for christmas lunch (Surf'n'Turf BBQ, YUM!) and then tea at Michael and Marysia's place for a run around with the other kids.

Thanks go to everyone who has been there for us in whatever way shap or form and especially to those who have and continue to donate blood. I hope you and your families all have an amazingly happy christmas and have your loved ones around you. Love and prosperity for the new year,

Hannah

The Big Day!!! And more chemo, ho hum...

We have finally got over the complete insanity of a five year old's birthday party now and have been getting back into the "normal" rhythm of things (ie. chemo and trips to Perth!). Josh had a fantastic birthday, thank you so much to all those of you who sent messages, brought presents or attended his party, he was absolutely over the moon to have everyone there who could come and you all made it a very special time. Of course there were dozens of parcels, mountains of party food and lots of noisy kids - I was in heaven!!! This is exactly what we had planned and there weren't even any squabbles or tears (other than Josh's daddy) which is pretty incredible!

I am so happy that the parties went off without a hitch and (thanks to Sanford Rd Post Office, Business Centre and Delivery Centre staff) we could afford to give him a real party with all the trimmings and instead of spending days cooking and cleaning up I got to spend the big day with Josh. The day started as it always does with me waking early to spend the time before the kids wake up writing his birthday card and marking the exact moment at 6.28am on 29-11-03 when he first entered the world with a few quiet tears and prayers for the future. This year there were possibly a few more tears than other years but they were all out of the way by the time birthday boy was up as crying was banished for the duration of the weekend.

It just makes your world come together to see the kids having fun together and just forgetting to be worried or scared and feeling...average for a while! We have also had a very generous donation of a considerable amount of money from Apex Albany this week and cannot thank them enough, they are true godsends and we will be able to cross quite a few more things off Joshy's "bucket list" in the next few months thanks to them.

Back up to Perth on Monday, just the two of us this time which in some ways is very hard and in others is easier. Chemo started late on Tuesday as it was not made until 2pm which meant we were stuck up there from 8.30am til 5.30pm, but I am not complaining as we have not had any overnight stays at PMH since Josh's first cycle after relapse in September even if we have been admitted to ARH. The week went very smoothly with us getting out by 3pm for the rest of the week and heading to The Sarlight Express Room, Megazone or Baskin & Robbins in the afternoons or evenings. We had the lovely Immie in bed next to us on Wednesday for her broviac removal. Three huge cheers for SuperKid finishing radiation and having her line out, great job guys!!! Josh was so excited to have a friend to play with and I got into some hard core colouring with Immie, she was such a little chatterbox, it was really nice to spend that time with her and Fee. Nothing like friends.

On Thursday Oscar was down from Wickham which was great for us as Josh LOVES Oscar to death. We are actually living in the unti Oscar and his family were in during their stay so it was a bit strange for him the first time he visited. The boys had a ball being rough and noisy and silly, they had such a blast you would never have known Os had a lumbar puncture and Josh had chemo that morning!!! We also got to see Damon, Laura and Jason - some other good friends who have moved out of the units. In under a month Damon will ahve a new sibling so I am very excited for all of them. It's always nice to catch up with people you live far away from, RMH is like a meeting place at times for ships in the night.

Thank you also to the girls at RMH for Josh's birthday present, he plays Hungry Hippos all day every day and I am NOT exaggerating. I come in and ask him what he wants to do "oh, I might just get those hippos out I think Mum..."

Now we are back home again we are gearing up for christmas and trying to get the rest of my present shopping done! Also aiming to get back to the gym which has gone by the wayside for far too long again. I had a great walk with my beautiful mate Tam last night and was reminded about how the simplest things often make us the happiest!

Love and lunacy,

Hannah

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PS. The other news is that Josh has hair!!! Blonde and only 1/2 cm it's true but so far it is hanging in there through the last two chemo treatments, odd for sure but he looks so cute and fuzzy!!! I wonder if it will be curly again or straight, it was so dark before so I am very surprised at the colour but you never know, it may change yet, stranger things have happened.