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.

The Eve of The Birthday!

It's the day we doubted would come tomorrow - the day Josh turns five! Last year I was thinking of moving his birthday forward as we didn't know if he'd make it through the mega-dose chemo and now it's a year later and we are having another very important day with our very grown-up little man. He is so excited about the prospect of presents and parties but for me and I am sure Peter it is a bitter-sweet day. We are so happy he will have a great time and that all his family and friends will be there to celebrate with him, but we know we will not get to celebrate another of these milestones with our brave boy, it will be his last birthday before the final goodnight we say to him.

Josh's counts are high enough for chemo now so he and I are heading up on monday morning thanks to the incredible Suzanne who just said "yep, we'll reshuffle it so you don't have to rush up here. Take your time and enjoy the party" What a star! I talked briefly to the Hospice coordinator up in ARH this morning when we were having the blood count done and we are making an appointment to meet and have a proper talk soon. I know it is something that we need to talk about and the sooner the better but it is still a real shock to the system talking to people about the impending death of your first born child.

I am hoping everything runs smoothly with the two parties, I am sure it will. Josh is over the moon that his Uncle Danny, cousins, Great Grandad, Grandad and brother could come and share the day with him, it makes it even more special.

Josh actually had the week at school this week which is the first time he has attended since the beginning of the semester when he relapsed. The school have been fantastic about things and very understanding and Josh had a ball. he had been asking to go for a while and this was the first time he has had high enough counts to do so. He loved it on Monday and Tuesday, had a tiring day Wednesday and refused to participate without very heavy encouragement in Pirate Day on Thursday. We all went in for a morning tea and it was brilliant seeing him running about with his friends and just being a little boy instead of a cancer patient.

We had a trip up to Perth due to miscommunication last Sunday and after settling in and having a count done discovering he was too low on platelets to go ahead and after getting some very much needed blood, playing madly with the lovely Louise (music therapist) and Suzanne and Benedicta sorting the mess out we promptly drove back home again! Thanks must go to my darling McKenzies for looking after the smallest member of the family while we were gone, the kids were so relieved to see him when we got back!!!

Will post birthday photos when I get home from Perth. Much love and happy thoughts "I DO believe in fairies", Immie!!

Hannah

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We have a new addition!!!

No, not a baby, definately not but a lovely sweet and very funny puppy called Fudge. He is a 8 1/2 week old Chihuahua X Shih Tzu boy and he is Champagne and White in colour. We found him on Friday night and the first thing Joshy said when he saw him was "Hello my dog Fudge, I love you so much!"...we had to get him even though we did NOT want a Chihuahua or a male dog, we got both.

He's had a few accidents as you'd expect but he seems to be perfect so far, gentle, playful and so so tiny! Needless to say, the kids are over the moon and fought about who would get to have the first turn to hold his lead on his first trip to the beach. He really isn't fond of the water and especially hated his bath after the beach but he's fit right in with us and we already couldn't imagine life without him. It is amazing what love and joy a puppy can add to your life.

We had a delightful day at the hospital on Thursday having blood and platelets but Josh felt so much better afterwards. He had a lot of pain while we were up there until he fell asleep for an hour and Mum arrived with the pain meds. Poor little man kept telling me "I can't stand this any more mummy" I bawled my eyes out.

Last night Josh had something new when he developed and anaphylactic reaction to the icecream he ate (we presume) that contained coconut oil. Withing a few minutes he was yelling and crying about strange things which we put down to tiredness but he then said his nose hurt a bit later while I was putting him to bed. As I watched his lip swelled to triple the size and his eyes were swelling and his nose blocked up. When he said his throat hurt I got very panicked but when Peter took him up, after some Phenergan and a bit of time he got quite a lot better and by the time Mum got to our place to look after Anika and I drove to the hospital he was calm and reading a book. Although he looked terrible and said he felt a bit dizzy and yukky for the day, he is fine thank god. The worst part was seeing Anika so distressed that Josh had to be rushed off, obviously in a lot of discomfort. The poor little thing was shaking like a leaf and crying her eyes out because she was so worried about Josh. I tried to be as calm as I could, but she picked up on how serious things are. She still talks a lot about going to heaven to be with Nanna and baby Blake and Naomi. She at least knows how beautiful it is there and is not upset any more about the idea of going there and even draws pictures and makes christmas presents to take to them "when I am a grown up lady and I go to heaven".

The picture of Anika asleep on the chair is just so classic! She goes and goes and then conks out as soon as she sits down. I call her Sleeping Beauty and she loves it when I read the story to her before bed (twice tonight). She looks so uncomfortable but sat like that asleep for two hours so it can't be that bad!

Hannah

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 other...how 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,

Hannah

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.

Playing Catch-up

The last month has been such a blur that I haven't had a chance to think about what has been happening let alone tell anyone else what is going on!!! Josh has has his second cycle of chemo which he tolerated very well. There were several transfusions as usual but all round medically he was quite well other than catching ANOTHER cold when he was not yet over the first!

We were able to head home the day after treatment as he was topped up with platelets before we left and stayed home for a massive three days!!!*just a hint of sarcasm there!* the reason being the timing of the transfusions and scans was a real pain in the bum so we forfeited going to Telethon and Sailing on the Swan to get home for a bit as Josh had been so miserable being in Perth for so long. On the upside, we did get to see a lot of the lovely Lara who even brought me a homemade birthday cake (I had a total of three cakes; I got an icecream cake as the kids were distraught I wouldn't have one, Dad brought one up and Lara made one!). We made trips to Kings Park, Lake Monger Reserve and next door park as Josh was not well to head over to the other house and play. It was crappy weather interspersed with lovely days, very unpredictable.

After the MIBG got cancelled once and rescheduled, it finally got done and after we headed back up, the CAT scan happened and we headed back home as the counts were not going to be high enough for chemo the week after. We are still here! We had to come up early for the CAT scan due to the fact the blood bank decided they were not going to send any more blood products to Albany as they had to be discarded again due to incorrect storage. Apparently they had been sticking them in an Esky with a freezer block and putting them on a road courier to get here! For those who don't know, it is a five hour drive and considering they were heading inland to Narrogin, Wagin etc. on the way, you may as well add another two hours to that. Our angel Liz had a very stern word to them and they quickly changed their minds about that one! I had been bawling my eyes out at the cruelty of having to stay in Perth permanently as he was needing products between once and four times a week. I was so so happy when the all got sorted out and I have now been assured that they will be flown down in the future. It just made me so mad as there is a severe shortage going on and they are causing them to be tipped down the drain as it is cheaper to freight than fly products! HUGE thanks to everyone who has donated since the big roundup. Even though Josh won't get your donationg, it will save the life of someone in desperate need and means we won't have such a wait when he does need blood or platelets. Don't forget to keep donating!

Josh has been quite well. As you can see from the pics, his hair fell out after the first cycle and this time it was a frustratingly slow process. Anika and I had a gastro bug, but Josh seems to have miraculously avoided it!!! We haven't really seen any of the kids friends due to mutual illnesses, but have been at the beach almost every day and have been fishing off the jetty too. We caught a few and the kids loved it. They have been loving the swimming at the beach and paddling pools too, they are such water babies and Josh knows no fear!

The scan results have shown that the chemo is holding the disease back, but it is still progressing and this counts him out of the Americal study. The only options remaining are to continue with chemo, see if he is eligible for MIBG treatment or do nothing and wait for the inevitable. Not what we were hoping for (ie. a major miracle and a NED scan result!) but about what I suspected.

At the moment, josh is not able to have any more chemo as his counts are too low so we are getting checked again on Wednesday and probably heading back up on Thursday. The only other real news is that we have seen my beautiful nephew this visit, far too cute for his own good and that Joel has turned 14 and my darling Laura is now a member of the big kids club at 27! Miss Immie had her stem cells back last week and all went well and it was so nice seeing her and Fee (and finally meeting Kody) when we were up last time. I also had a visit to work and caught up with the beautiful people there, they are as lovely and supporting as ever, lucky me.

Sparkly fairy dust and "good hair days",

Hannah XXXXXXXXXX

Holiday Photos

Here are the pics as promised of the Make-A-Wish Trip, so much fun!

The last couple of weeks have been a bit of a blur really with a cycle of chemo and an admission to Albany Regional Hospital thrown in just to confuse things! Josh tolerated the chemo quite well with only one vomit and actually made a freind while he was inpatient! It was not a happy week with the chemo going on but at least he tolerated it well physically even though he struggled mentally with the idea of going through further treatment.

After we all came home on the Sunday we ran about madly doing things, going to visit grandparents and packing away the entrails of our Perth stay. Let me tell you, it took a while!

On Tuesday we booked an appointment with the GP to get a form for counts and we discovered how different things really are in Albany! We had to get booked in to the Oncology clinic on the Thursday for counts to be done and when it was established he really DID need platelets, we had to get booked in the next day to get admitted for the transfusion! No outpatient business here! The platelets did not get in until late and by then I had also convinced them along with the shocking red cell count (64!) that he also needed blood. Due to the fact he had developed a virus and a temp we also had to stay for the two IV antibiotics to be run. The blood got there very late that night and we stayed another night after that so he could have the full whack of antibiotics. I have to say that the nurses and Dr Mildenhall have really bent over backwards to help us out anyway they can. They are friendly, caring and heaps of fun for a sick and tired little man to talk to.

Since then Josh's cough hasn't really improved and I woke up today after only a couple of hours sleep feeling like I had been drugged senseless and had swallowed some chook grit for good measure. This is a real shocker of a cold so we have been avoiding getting close to too many people. Now I know how Joshy felt in hospital when he just wanted to sleep all day, but he also needed blood and platelets!!! Poor little thing.

Peter's grandad is coming to stay today and other friends from Ronald McDonald House (RMH) Rolly and Viv are bringing their kids Shaylarna, Akyra and Zoltyn down to visit us later in the week as they are in Perth for Akyra's heart surgery and have now moved on from "The House" and back up north. It'll be great to see them!

These last couple of pics are from PMH and ARH, note the not so impressed look on his face! The smiley one is in our "new home" at unit 6 RMH.

Congratulations to Fee, Jas, Kody and the lovely Miss Immie on your scan results! You are true champs and we love you all to bits! We may actually even get to catch up with you one day at Hotel PMH!

Better go and nurse my cold and feel sorry for myself for a couple of minutes til the kids wake up!

Hannah

PS, Check out the YouTube clip here if you are prepared for a cry, it is beautiful but heartwrenching. http://www.youtube.com/watch?v=9Wwi87drDKk

The WISH!!!

It's been a while since the last update but as many of you know, Josh's cancer has returned with a vengeance. Whe he had his last lot of scans, the docs were not really convinced that we were looking at a full-blown relapse but one look at the next lot of scans did. In the six weeks between scans the shadow had gone from being a little bit in one vertebra to the whole spine, skull, arms, legs and ribs and "extensive bone marrow involvement". We just couldn't believe that it was real. I mean, how cruel can life be for a little boy to have to suffer incredibly through all those treatments only to have just a few short months to live.
We were advised to go on Josh's Make-A-Wish immediately as it was unlikely he would be well enough again to go. We got the news on the Wednesday and on Friday at 6.55am we were in the air on the first leg of our journey! I cannot say emphatically enough how amazing, caring and helpful the Make-A-Wish team are. Without this dream holiday to enjoy, I am not sure how we could have coped in the week after "the News". We were given an incredible apartment that was bigger than our house (no kidding) in a full on luxury hotel! Total bliss, the kids LOVEd the heated indoor pool and it was great for Josh's pain management, and Aaron loved the ourdoor beach waterslide.
On the Monday we went to Movie World where Josh played on the bumper cars for hours, met all the Looney Toons (his favourites) and had the meeting specially organised for him with Daffy Duck! Movie world took some lovely pictures for us and gave us voucers for lunch, icecreams and gave the kids each some presents. They really went all out to make sure we had a great day and that we didn't have to pay for a thing!
Tuesday was Sea World and the amazing news we were having a dolphin pat! That was just incredible with Josh constantly exclaiming about Scooter ("our" dolphin) "she is so cute and beautiful!" They had a water fight and a big cuddle. Later the little ones had worn themselves out on the rides and exhibits - or so we thought!!! They had a great splash around in the fountain to top off the day.
Josh's pain was worsening but we pushed on and decided to go to Wet and Wild on the way up to Brisbane on Wednesday. Josh got very cold and was in a lot of pain so we made a detour to the Royal Children's Hospital on the way to the apartment. After a good few hours there in the ED, we set off in search of our accommodation. After a couple of hours of trying to work out carparking, how to get in as there was noone in reception and it was closed we finally got up to the apartment where Josh passed out to sleep for a couple of hours after a hefty dose of Oxycodone (oral morphine). Aaron and I headed to the 24/7 shop downstairs to grab whatever we could find in the way of tea.
Te next day (Thursday) was the best of the whole trip with the visit to Australia Zoo to complete Josh's most cherished wish of getting up close and personal with an elephant! We were assigned a beautiful guide called Linda who photographed the whole day so we were free to enjoy it with the kids and also got us to the front of the queue with the Meet the Animals sessions where we patted and held a koala, constrictor snake (my favourite, he was beautiful), iguana and I got my bird fix with a Wedge Tail Eagle. We also patted a wombat and alligator as they were being walked around the zoo and sat in Terri and Bindi's VIP box for the animal exhibition and even got our own mention in the act! Josh's pain was still there but when it came time to see the elephants after lunch (which, along with everything we experienced that day,was donated by Australia Zoo), he suddenly forgot the pain and really came alive. The three elephants;Siam, Sabu and Bimbo were just lovely and so gentle! Josh fed them some veggies and had a little pat and his face just lit up! He didn't take his eyes off them for a second.
As you can see, we had such a great time on the Wish that it was almost too hard to come back to reality! But on Friday a thoroughly worn out family made their way to the airport (no thanks to the GPS which decided to pack it in as soon as we got in the car that morning!!!) and JUST made the flight! On the way back home we had a shocking trip. Josh fell asleep as soon as we took off and after two hours was sweating profusely and suddenly woke up dry retching and crying. After having some panadol and a drink, he passed out and could not be woken. He was still sweating and his pulse was irregular. The flight staff were amazing, taking Anika for walks, giving her colourinbg in to do and when Josh got really sick organising an ambulance pickup and alerting the next flight that we would not be on it. The girls did painting with Aaron and Anika and actually offered to take them to their motel so we could both go with Josh. The pilot sped up and we arrived 20mins ahead of time and then collected our bags and helped Peter get them into a taxi! I can't believe how wonderful they were, even giving us a huge bag of chocolates, chips and crackers to take with us. Thank you so much to Virgin Blue, especially Captain Chris, Allie and Rebecca, you are amazing!
Of course as soon as Josh got into the ambulance, he sat up and said "hi everyone, how are you going?" and proceded to ear bend the ambos abotu Poppy's remote controlled car until he got to the hospital!!! I must have seemed like such a hypochondriac mum, he could have at least pretended to look sick!!!! Noone can really explain what went wrong and he seemes to improve completely with no further episodes so it will remail one of those unsolved mysteries.
As we went straight from the airport to the hospital, there was no going home as we had though as the 3B team wanted Josh to stay where they could keep an eye on him. Peter and the othert two flew home the next morning much to Josh's horror and we settled into life in Unit 6 at RMH. Had a quiet night and Sunday evening Mum drove Anika back up to be with us as Josh missed her insanely.
Port went in on Monday arvo and it was a truly horrible day for me as it just brought it all back to me how we are starting again at this horrible battle ahead without the same hope we had to fuel us last time. Thank God for Ranita (Josh's beloved OT and future wife) who came from a funeral to see us after the surgery. Just having someone there when you really need it is so comforting. As it was so late for surgery, chemo started very early Tuesday morning and ran all week quite uneventfully with blood given on Wednesday and platelets on Saturday. Only one spew and plenty of icecreams to make it all better! His Port was quite sore but went in fine and looks good as far as placement and access goes. Josh made a new friend called Sebastian who also had a port put in (on Tuesday though) and they spent the week playing Mario Baseball and climbing into each others beds to watch movies and play. It was nice to see Josh interacting with other kids for once rather than being in Isolation! All week, Ranita called in to do medical play and check up on us which Josh absolutely loved.
So we got the OK to come home on Sunday so after many visits to Megazone and Starlight Express Room (you guys are lifesavers) through the week we came back on Sunday afternoon and are heading to Albany Hospital for a fun-filled day on Thursday probably getting blood and platelets!
I think that's enough for now, big hi to Fee and Immie who are once again waiting at Hotel PMH and to my darling Ree who sent me to most beautiful message just when I needed it the most (the timing was just perfect). Photos soon...
Love, Hannah