Wednesday, December 24, 2008

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,


Wednesday, December 10, 2008

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,
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.

Friday, November 28, 2008

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!!


Saturday, November 8, 2008

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!

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.

Sunday, October 19, 2008

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",


Tuesday, September 16, 2008

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!


PS, Check out the YouTube clip here if you are prepared for a cry, it is beautiful but heartwrenching.

Tuesday, September 9, 2008

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

Monday, August 18, 2008

Neek's Birthday!

Last weekend we went to the Residency Museum, the kids love going there. They had a great time watching a DVD about dinosaurs and playing a fishing game, looking at the exhibits and playing in the old school room.

This weekend was the "baby"s 3rd birthday!!! I can't believe it has been three whole years since she was growing inside me! They change so fast and achieve so much in those first few years of life, it really is a miracle. On Saturday (her actual birthday), we had a family BBQ as is our tradition with sausages, chops, fresh rolls,
fairy bread, lollies, salads, potato bake and, of course, yummy icecream cake and profiteroles for sweets. Thanks to Tammy for the Potato Bake, Grandma for the salads and rolls and her help, Clare for her effort in meeting Missy Moos' demands (pink fairy balloons, a pony in pink wrapping paper, fairy bread and lollies), and last but certainly not least, darling Granny who spent the whole weekend washing dishes and cleaning up.

On Saturday night Uncle Danny, Emma and Brayden drove from Busselton to see the birthday girl. Both the kids (and Peter and I) were so happy to see them and we headed over to Gran's for a delicious tea and a game of shoot-em-up with cap guns. I don't know who had more fun, the kids or Uncle Danny?! On our way to Grannys house, there was an increadible sunset at the exact moment Anika entered the world three years ago at 6.10pm. It was like nature put on a special display to honour our beautiful girl.

On Sunday we had the fancy dress kids party with; Laura the Pirate, Ty the Policeman, Jasmine the Nurse, Julie, Superman Lachie, Fairy Chloe, Bec and Jessica as Dora The Explorer along with Uncle Danny, Emma, Brayden and Granny (and Mum - the nutty looking belly dancer!). The kids were serenaded by Hi-5 and played Balloon Races, Musical Bobs and Pass the Parcel (thanks to Daddy and Brayd who got handy with the lollies and stickytape!) and just generally had a blast! It was so great to see them all having so much fun and they were little angels, I guess they were too busy having fun to fight for once! Joshy had asked to be a potato(???) but his second choice was a cowboy, and he looked so cute in his sparkly stetson and denims! Miss Anika of course had to be an angel and her wings lasted all of five minutes before being discarded, she had green, pink and silver glitter hairspray to accompany her dress and wings. Thanks to everyone for making her feel so special on her big day, she really is such a little ray of sunshine and deserves no end of happiness.

This waiting business is wearing us down badly but it is the calm before the storm I guess. Once we have everything confirmed it will be all stations GO! to try and raise all that money to try and save our boy. That is what I will call our fundraiser S.O.S. - Save Our Son!

Work has been flat out with the Career Expo on Friday but it is a great opportunity to get the word out to the high school leavers about our department. Plus I got to briefly see Tam, Wendy and Tom so it wasn't such a bad day after all - just long! This week is the first time I have taken a day off since I started at TAFE in Jan 2003 a few weeks after Josh was born so it feels a bit strange asking people to take my classes. I have been there with colds, flus, gastro and when the kids had chickenpox and now I am taking two days off when I am healthy!! Go figure.

Thanks to all of you for your love, support and prayers, believe me, we need it very badly just now. I may not post again for a while depending upon the news we get on Wednesday, but will update when I have recovered from the news enough.

Hi to brave girl Immie who had surgery this morning to put in a Broviac. Hope you are recovering well and back to fine form tomorrow to give Kods and Mum and Dad curry!



Wednesday, August 13, 2008

Inspiring Thoughts sent to me by a very beautiful and wise friend

You can't change the past, but you can ruin the present by worrying over the future.
The darkest moment of the night is just before dawn.
All people smile in the same language.
A hug is a great gift... one size fits all. It can be given for any occasion and it's easy to exchange.

Love...and you shall be loved.
Everyone has beauty but not everyone sees it.
It's important for parents to live the same things they teach.
The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart.
If you fill your heart with regrets of yesterday and the worries of tomorrow, you have no today to be thankful for.

Take time to laugh, for it is the music of the soul.
If anyone speaks badly of you, live so none will believe it.
Patience is the ability to idle your motor when you feel like stripping your gears.

To get out of a difficulty, one usually must go through it.
We take for granted the things that we should be giving thanks for.
Love is the only thing that can be divided without being diminished.
For every minute you are angry with someone, you lose 60 seconds of happiness that you can never get back.
Do what you can, for who you can, with what you have, and where you are

Monday, August 11, 2008

Thus begins the "fortnight of stress"

Today the boys are off to Perth for scan week and I have to admit that although I have been feeling a bit more positive that we will be able to cope with the possibility of moving to the US, I am still VERY scared about what we may hear next Wednesday about the scans. It is always possible that they will say it is far too late to look at clinical trials as salvage therapy or that he will not be eligible or accepted into the trials or that we won't raise them money in time... there are a lot of variables as you can see but there is a slim chance we will get Josh back so that is what we are focussed on. Once the negative thoughts surface it makes it a lot harder to get through the day. He has been getting a lot of diarrhoea (again a symptom of the NB).

We had a great weekend with me going out on the town with Marysia for Morgan's going away party which I really ended up enjoying in spite of being exhausted and coming down with a cold. I haven't really had a big night out at the pub since I got pregnant with Josh so it's a long time between drinks so to speak! I also got to meet up with the lovely Tammy and Abby for a catch up and some yummy cheesecake slics and Abby came over for tea which we all loved. The kids woke up the next morning asking where Ab was! That's the reason they wouldn't go to sleep apparently! Anika has been having lots of nightmares and is so scared of the dark she won't go to sleep a lot of the time and last night Josh got up at 4.30 to go to the toilet and had huge tantrums so we haven't been getting a whole lot of sleep!

We had a morning at the beach believe it or not on sunday as we took Dorothy - Anika's crazy crab - to the beach to find her a new shell and had a play at the playground, look at the ship in dock at the harbour and a quick whiz around the Boatshed Markets before headign home to put the kids to bed (not that they slept!), mow the lawns and pack for Perth. Kim, Clare, Sam and Lauren came to visit and Anika sent Clare off with a list of things to briong to the BBQ for her birthday on Saturday; pink boxes with ponies inside for presents, fairy bread, lollies and pink fairy balloons! Are we sensing a theme here?! She is so excited about her birthday!

We collected Granny from the busstop and took her home for tea and kids were very tired and cranky the whole evening. Pete and Josh are going to have a very long trip today methinks!!!

Hi to Immie the little star who is currently in Hotel PMH having her port removed. All our love little princess, hopefully the boys will see you up there.

Green thoughts of peace and tranquility,

Hannah. XXXXX

Friday, August 8, 2008

I had to include this poem I found, it says so much and is so accurate.

The Littlest Soldiers

The medals on our chests
Are porta-caths for meds
Helmets won't stay on us
'cause no hair is on our heads.

Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play.

We fight with honor and courage
No marine could do as well
We are only little children
Living in this hell.

So bring on the medals
The Purple Hearts of Wars
The Gold Cross, The Silver Star
To place upon our scars

For We are the Children of Cancer
No one has fought so hard
But every day we struggle on
Our life is our reward.

Chery Jagannathan

Hope shines a light!

Today is a whole new day. For the first time in weeks I have woken up feeling hopeful. I can't change Josh's battle ahead but I can raise the money we need, I can help other people on the same journey and I can have the greatest joy I have ever known and that is having this incredible little boy call me Mummy. I don't know how we got so lucky! Three wonderful kids and this cancer is just another opportunity to see how amazing they really are, it's another challenge. Granted it is a huge challenge but we aren't beaten yet. I think I have found the spirit I needed to help Josh through this. I think baby Blake had a big hand in that, his courage and inner peace taught me a lot about living.

We are in the process of researching clinical trials at several overseas hospitals, especially Memorial Sloane Kettering. It is fantastic to have a glimmer of hope that not only might prolong Josh's life but may cure the cancer and give him that wonderful QUALITY of life we value so much. I read back through my diary today and looked at the entry for the same day last year;

"The pain is still there (Morphine is up to max at 4m/l hr and just taking the edge off) but the mucousitis ulcers seem to be getting better in your mouth though your bottom and tummy are still a mess. I talked through a plan for the nasal-gastric tube with Joan and Ranita and there is now a protocol in place for us to reduce the stress and aim to keep it down for longer. Ranita also made you a sticker chart to complement this so you can feel a sense of accomplshment at completing procedures and don't feel like a failure. You had one bag of packed cells (blood) and two of platelets. We had a better night but still not fantastic, up every 15 minutes and only three vomits."

This was the first ear infection last year and the day afterwards the eardrum blew so the pain must have been horrific but never a complaint from Josh, that's not his style. I just see how far we have come and how different our lives are right now and it makes me feel great. I was wondering if I was offering Josh the kind of quality of life I want for him as I am working so often right now (we need the money so badly) and always seem to be busy busy busy. Now I see the huge difference in his life now, he is even going to kindy and it makes me proud. He is slowly adapting to a "normal" life again although it will never be hospital free.

The scans next week are a great source of consternation as we just have no idea which way it will go. This will probably be the confirmation of the presence of Neuroblastoma cells and from there we should know the extent of the disease. My fear is that it has metasticized (moved) from his spine and there is another solid tumour lurking in his chest and there are blasts in his bone marrow. That is worst case scenario and in that case I don't think we would have time to raise the money to go to MSK in NY. What I am hoping and choose to focus on is the words "not convinced" used by Josh's consultant and the possibility the cancer has spontaneously gone away or it never was NB cells to begin with. Fingers, toes and everything else crossed.

Josh received his incredible quilt from yesterday and it is absolutely beautiful! There are some pics above, believe me he is thrilled with it and so am I. It seems unbelieveable that all these people all over the world are rooting for us and spent their time making something to bring comfort to our little man. Sincere thanks to Linde and ALL JOSH'S AMAZING STITCHERS!

I had a lovely meeting yesterday with the head honchos at Josh's school (Leigh, John and Sally). They are all so lovely, I know Josh is in great hands and they just really try hard to make sure the right thing is done by Josh. What fantastic ambassadors for the school! I am hoping Josh will be out of pain enough to get to kindy again on 25th Aug but you never know with the bone marrow and trephines - sometimes he is in considerable pain for a week or so and sometimes he wakes up with a bit of a sore back and is back to normal the day after.

Will blog again soon. Love,


Tuesday, August 5, 2008

Life as we Know it

Work, who needs it right?! I do for one; it is a great way to get out of the house, meet new people and have an adult conversation for once that is not about neuroblastoma! I do have some very wonderful friends who I have a great time with but sometimes just that superficial contact with students, the lady at the checkout etc can be really cleansing. That said, it can also be really frustrating (don't ask me how my day was on a Friday arvo after my Cert 2 class!!!). I am just lucky to work with fantastic people doing something meaningful and enjoyable (for the most part).

Last Friday was a bit of a washout really, my mind was in another place (ie Mundaring cemetary with Cherrie and her darling baby) and I felt guilty for not being able to be there to say goodbye to an amazing little man and support his family by showing them how much he means still to my family, but also guilty I could not concentrate on my lectures that day. I am afraid they did a LOT of "self paced" learning that day! All round not good day.

Josh has been complaining of back pain a bit lately which is not a great thing to hear after the last scan results. He has also been tired, irritable and headachey, all points to one thing unfortunately. Cancer may be spreading fast. I have been frantically researching trials in the US and UK in the hope that one may be appropriate and he may be eligible for the study but I don't hold out much hope we would be able to raise the $450,000 we would need to get into the trials at Sloan Kettering in USA which are the ones which look the most promising, especially the antibody and MIBG therapy. It's pretty terrible when you can't save your child's life because you have no money to pay for treatment.

Today Josh had a brilliant time playing with a beautiful new toy bought for him by the Lovely Laura. The things he was telling her in the toyshop was just a real crackup when she told me. Very Josh, very little old man! He spent the entire day playing with his new ship. Yelling at his sister but still very focussed on "catching the shark"!

There is a quilt coming for Joshy from thanks to all the dedicated and fantastic stitchers who worked on it. Josh is getting an "emergency quilt" which is a bit scary given that they are reserved for little ones who may not last the wait until a profile is put on the web and stitchers are recruited and it is assembled. It is not something I want to think about. I am just aiming for Josh to get to his 6th birthday, that would be great. I remember last year we talked about bringing his 4th birthday forward as we thought he probably wouldn't make it til then. Now we are looking forward to number 5 and hoping for a number 6!

Next Wednesday is D-Day or should I say M-Day, the day of the dreaded MIBG scan and Bone Marrow aspiration. I am not able to go up for the scans etc but am trying like mad to get the next tues and weds off to go up for the results with Peter and Josh, I just have to be there for that. Good or bad we need to face the news as a united front against cancer.

Have a wonderful week full of butterflies and chocolate,


Monday, July 28, 2008

Week of madness!

Well, the time seems to be flying by (hence the name of the blog!) and we have had so much going on over the last few days!!! We went to see Circus Quirkus last week, it was hilarious and the kids had a ball (thanks Laura!). It was great to see them happy and laughing.

The boys are in Perth for their appointments, I am work work working and there is no end of paperwork. On the up side, Peter's brother Danny and nephew Brayden came down from Busselton to visit over the weekend and the kids had a ball. They just love their Uncle Danny and they were attached at the hip to Brayden the whole time they were here.

I am hoping to get on top of all this work soon and for it not to be such a mad panic next time the boys head to Perth (good luck with that! They head up on the 12th Aug for scan week and Anika's parties are on 16th and 17th Aug). Anika's birthday will hopefully be a welcome distraction to the waiting for scan results as it is always such a tough time. It's even worse this time though knowing it will not be good news.

A quick note to Fee, Jason, Kody and the incredible Miss Immie to say I hope you had a great time on your first plane trip Immie and in Melbourne! Looking forward to seeing the pics soon!!!

All my love to Ree, Dean and Kai, thinking about you every single hour of every day and remembering your precious boy.

Happy travelling,


Friday, July 25, 2008

Saddest day

With a very heavy heart, I am letting you know that amazing, beautiful and loving Baby Blake passed away yesterday with his wonderful family by his side. We all wish him a safe journey, a peaceful and happy heaven and a set of wings just the right size for a special boy. Sleep in peace forever little man, you will be very much missed by all of us. The world lost an inspirational and very brave little fighter yesterday. Please take the time tonight to think of Blakey and his family Cherrie, Dean and Kai and send them all the strength you can in this terrible time for them. Look at the night sky, Blake is the brightest little star. We love you Blake. You will not be forgotten.


Friday, July 18, 2008

Firstly, just to let you know that I will probably not be blogging much if at all over the next few weeks due to a huge workload in starting this great big chunk of lecturing I took on before "the big news" and Joshies scans, ENT & WA Institute For Deaf Education trip to Perth as well as Anika's birthday on the 16th Aug. I am tired just thinking about it!!!

We have had a good week with Aaron here with us and the littler ones...well, they have been right little so and so's! I have never seen kids fight so much!!! Joshy has been waking me up at night again at least twice a night (good bye deep sleeps) and Anika has been wetting thru all her clothing and bedding every couple of nights (even with nappies on). They have been so hyper, must be the full moon and the huge raging storms?! Otherwise we've had a good time with a viewing of Kung Fu Panda yesterday with Anika doing her demonic cackle in the appropriate places and Josh doing a 4yr old version of Kung Fu one the seats in front (sorry to the movie goers in the front row!). They have also been fishing, "helping" mummy with the cleaning and beating up Michael and Baldy when they visited on Tuesday night! Here's to a better sleep tonight~!!~!

On a sadder note, a message to the most lovely family in the shadow of your terrible news. Ree, Dean, Kai and darling, amazing, beautiful Blakey; we love you and wish every second for everything to be a bad dream, you are the best family your lovely boy could ever have had and he is as lucky to have you as you are to have him. Anyone who prays, please pray for this incredibly brave and long suffering little man and his family, if you could feel a drop of their pain, you would understand their courage and love for their son. All our love, hugs and happy memories to you little man. XXX


Wednesday, July 16, 2008

One step forwards and a whopping great thump back down!

Well, all in all it has been a shocking week. As many of you may by now know, the news from Josh's scans was completely not what we were hoping for or what we expected. There is a "hot-spot" (medical term for and area of contrast uptake ie. Neuroblastoma) in Josh's lumbar spine and in some soft tissue around the area. This is a new site, believe it or not there actually was a couple of parts of his body not filled with NB apparently!

I was so shocked as I though it would all just be routine although that annoying little voice in the back of my mind told me otherwise. Peter and Anika drove up that night (Wednesday) and we all crammed into our RMH room. The next morning Joshy and I had to be up at the hospital to get admitted at 7am for his Myringoplasty (replacing ear drum) and it was so hard to go through with it after the news the day before. The op was fine but Josh did not wake up for a good 24hrs afterwards and hit oxygen sats were VERY low so he was on oxygen until that night. He also spiked a temp of 38.5 which as all 3B families know is a bad thing. It righted itself after a stint on the drip and some pain relief and was probably related to the cold he had caught a few days prior.

I spent a horrible night listening to all the other kids in the room in pain and having procedures done while Josh slept completely oblivious to it all! I slept in bed with him which was actually really nice (if a tad squashy). He woke up and ate brekky once he'd had some Oxycodone and we took him back over to RMH at about 11.30. He then announced he needed a Maccas fix so we headed to the nearest McDonalds to gorge and panic as he sped around like a lunatic on drugs and coughed like an old smoker in the freezing playground. All rugged up we let him have 10mins to be a kid before we bundled him home. Later on in between downpour, we went for a walk to the park.

Saturday morning we headed to AQWA as we had never been and as we suspected. the kids LOVED it! Of course the main attraction was the cafe and the kids had a blast sitting on the travel belt in the underwater tank eating chips and ooohing and aaahing at all the "sharkeys and stingways!" They had a great day but still fought non stop!!!

Sunday morning after a very long night of nightmares for Josh, he was sleeping upstairs with Pete watching him and Anika and I were downstairs eating brekky when a very familiar and very beautiful face popped up! There outside the door was Laura!!! This may not sound too amazing except that she had started the five hour drive to see us at 3.30am and was prepared to turn around if we wanted family time! What an amazing friend. We were SOOOOOOOOOOO happy to see her, I was just too overwhelmed! After packing our things, we headed off to the zoo on the way home where, as usual, the kids were completely in their element. They loved having Laura with us and it was so special to share that time with her (thanks darling and you too Laught). Finally we left Perth at 4pm and began the long drive home! All in bed by 11.30pm and on to the next challenge the next day!

Aaron arrived on Monday morning and the kids are so excited to see him although they all bicker constantly. None of the kids is aware of what is going on and we are awaiting the next lot of scans to confirm things before we tell Aaron. Josh I think has guessed what is going on but true to our word, there will be no more chemo, no more NG tube or broviac and no more hair falling out. He will be here as long as he is meant to be and we will not try to prolong his life to make us happy. That is the beauty of the situation, there is no hard and fast rules, you do what is right for your child and your family. Other kids probably cope mentally with the chemo better so it would make more sense. I think we have made the right choice for Josh.

Josh starts school on Tuesday and it will be such a milestone for us all! Anika feels very indignant that she isn't heading off to kindy too, but her time will come all too soon!!!

Thank you to everyone who has been so wonderful and supportive, I am very grateful to have such warm and loving people around us at this confusing and difficult time for our family. We are looking forward to having a huge birthday party for Anika in five weeks and an enormous one for Josh in November god willing.

Love and magic to all of you. Hug your family just a little tighter and a little longer and NEVER be afraid to tell people how much you love them, I have learnt this from the wisest four year old I have ever met who tells his mummy every day how much he loves her. I am so lucky he is mine!


Saturday, July 5, 2008

Post Op Follow-up

Well, the circumcision is over (poor little guy) and it was altogether a bit of a trauma, but he is slowly getting back his spark. It was a long day yesterday but we were back home by 2pm and just in pain, pain and a bit more pain! The panadol is not doing a great deal to help but what can you expect?! Yesterday he was not even able to sit up at all but at lunchtime today he started actually tentatively playing which is great! I am in agony from my back though having been the slave who has to carry him around baby style for the last 36hrs! Next week it all starts again with the ear!

I am adding another link to my panel, a beautiful story about an amazing and very brave little boy called Kurtis who earned his wings several years ago now. His family is incredible and Kurtis has a lot in common with Joshy. Please take a look.

As promised, here is a picture of my tatt which I dearly love. Believe it or not, I actually feel better about my body since I had it done! I LOVE it, my dad was not so keen when he saw it today though (biological dad came down to visit and meet his new grandson).

Keep smiling and being you,


Wednesday, July 2, 2008

The Daily News!

Well, I just realised that I haven't even said what happened when the Make a Wish ladies came (Mandy, Marissa, Chris and Sherrie)!!! They were so lovely and they hadn't even got through the door before Josh blurted out "I want to go to the circus and ride bumper cars and I want to pat an elephant for my wish!" He was so excited that he actually asked me to turn the clock forwards to 2 o'clock so it would be almost time to see them!

After a long discussion with Josh and asking him about his favourite things, the ladies suggested a 7 night trip to the Gold Coast and visits to SeaWorld (to complete the wish of seeing a dolphin up close), MovieWorld (to ride on the dodgem cars and other kiddy rides and meet Josh's favourite TV characters from Looney Tunes) and Australia Zoo to achieve his most cherished wish of patting a real live elephant!!! How amazing is that?! We were just speechless and I am so very happy that Josh was able to communicate what his most treasured wishes are and that Aaron will be able to come with us!

It was very quiet at home last night - I passed my Auslan test though, thank god - and I was getting the blues the same way I do every second night Josh is away. First night I can deal with, it's the second night that always gets me.

Passing on love and rainbows to our very special little friend Imogen who has been admitted to 3B for a Port infection and wishing her a very fast recovery. We hope the port can be saved. Fee, you are a wonderful mummy!

Love, laughter and Looney Tunes,


Tuesday, July 1, 2008

Scan Week...

Josh and Peter are up in Perth for scans this week and it is very quiet and eerie in the house right now. It is the worst time when the scans are going on and waiting for results. Josh had an elevated catecholeamine reading last urine test, so it is even more worrying this time. Anika and I miss the boys so much when they are gone and we are left behind but get to do fun stuff like heading to Grandma and Poppy's house for tea and having coffee and milkshakes out at Dome, hitting the shops and library...

Joshy has officially finished all treatment after a huge fight with one of the doctors (who shall remain nameless) and being denied a script for the last week of Roaccutane. It is very exciting but at the same time scary as we are officially free of meds and it is a whole new chapter.

In the next few weeks, we have scans, two ops and Josh starts kindy and I am working almost fulltime next semester which is very stressful and I will miss the kids heaps!!!

Life goes on post cancer and I am so grateful for our healthy family. More photos soon...



Tuesday, June 24, 2008

By the way, I DID get my tattoo done on Saturday and guess what? It didn't hurt a bit (I swear), I was prepared for agony, but it was actually quite relaxing! I will post a picture of it when it doesn't have cream smeared all over it!!! Now I just have to convince Peter that it is a good idea to get the other one I want...

Days Of Our Lives...

Well, what a week! And the next couple of weeks should be even busier! *groan* I am almost done with my Cert IV Small Business Management and also Cert II Auslan. There have been friend's birthdays, my beautiful nephew's naming ceremony coming up and the ladies from Make-A-Wish are coming on Saturday - WOO HOO!!! We have started seeing a speech therapist for Josh's language develoment as a sideline to the hearing issues. Finally, finally, FINALLY have a date for Josh's first ear surgery for the 10th July to replace the eardrum. Six months later he can have the bones replaced but that is dependent upon the success of the eardrum graft.

Scans are still a big mess and as far as we know, Peter has to take Josh to Perth on 30th June for scans, drive back home 3rd July right after GA for CAT scan and go into Albany Regional Hospital for his circumcision on 4th July. I take him back to Perth 8th July and home when he is recovered enough from the surgery. Poor little man is going to have a couple of weeks of agony coming up, but at least it will be over with before kindy starts and his ear will not be such an infection risk.

The ear has been pouring fluid out again which, believe it or not, is a good thing as it means there is no blockage and the fluid is not smelly which is always a bonus!!! Our GP called yesterday saying the urine catecholeamines were a concern (they are Neuroblastoma markers) but when I saw the results, the catecholeamines were missing so they either did not get printed or did not get taken! The infection marker in his blood was elevated so possibly a mild ear infection causing the ooze? Here's hoping that the GP doesn't have any results we are not privvy to as it is agony waiting to hear news about a possible relapse...
Hope for the best, reach for the stars and pray for good health,


Tuesday, June 17, 2008

First Camp Quality Event...

Well, the last few days have been a bit of a blur really! On Thursday night I went to the first Albany branch of Make a Wish Foundation big fundraiser. It was a showing of Sex and the City movie with nibbles, wine and raffles beforehand. I went with Mum and Laura (my beautiful best mate) and I had such a great time!!! I met the lady who is coming to talk to Josh about his wish on the 28th (Chris) and we got to sit in the VIP area at the back with nice chairs and footrests. I was given a beautiful bunch of pink and green flowers (gerberas, lilliums, orchids, gladioli, all my favourites) and Mum won two of the raffle prizes - she did buy 20 tickets! - and I also won one, not bad winning almost half of the eight prizes!!! I felt so spoilt and it was fantastic to be there with my favourite people. Plus I really enjoyed the movie.

On Friday we went to Bunbury to stay with Peter's grandfather. Anika screamed for much of the trip but we got there in one piece and just in time for tea. On Saturday after a trip to the shops, we drove to Busselton to see the kids Uncle Danny and stayed for a couple of hours. Sunday morning we went to Bunbury Ten Pin Bowling for a Camp Quality Family Fun Day, our first ever. The kids had a brilliant time and got to see their friend Damon from RMH who Anika has not seen for ages. There were choccy frogs, sandwiches, hot chips, muffins galore, cool drinks and bikkies; what more could a kid want?! My Dad came down from Mandurah for a bit of a visit in the afternoon and we had a quietish night with the kids being right little buggers again. Monday morning we headed back home to unpack, do washing and all the other fun stuff you do when you get back from holidays.

We are still waiting to get dates for Josh's first ear surgery (to replace the eardrum) and for scan dates. I've been in contact with Disability Services and the lovely Kim has now got the ball rolling with Speech Pathology. There are so many balls to juggle and I only have two hands!!! As soon as I get a few balls in the air I notice one sitting on the ground and go to pick it up only to have all the other balls come tumbling down around me! The things I never knew BC (Before Cancer).

Anyhow, we are all healthy and generally well if a bit tired and grumpy. Looking forward to getting my tattoo done on the weekend as I will get to sit still for a whole hour and noone will be screaming in my ear (OK, maybe I will, but I am talking about the midgets who have taken over my life! AKA Josh & Anika).

Hoping the storms have missed you and that you are all happy and healthy,


Wednesday, June 11, 2008

Last night was a stressful time as Josh was complaining about back and chest pain. It is probably just a side effect of the Roaccutane medication he is on but it is always very stressful when things like this happen. Back pain is listed as a likely side effect and chest pain as "Less Likely" but not rare and hopefully that is what is causing it though these were the major symptoms before Josh was diagnosed so I sincerely hope the FBC (full blood count) taken yesterday shows up fine and the urine catecholamines are also normal (testing for Neuroblastoma markers Vanylilmandelic acid - VMA and Homovanyllic acid - HVA).
There is also some bruising - again could be the meds but when you're a cancer mum all these things make you VERY nervous! His poor skin is still taking a beating.
The pic next to the text is of round 3 of Roaccutane after it had healed a bit. The stuff is terrible for him but we'd do anything for a healthy boy. The mood swings are the worst part and the uncontrollable temper and aggression - the bits you can't see. He is constantly in inner turmoil at the moment. Poor little man.

This morning there was a very beautiful rainbow on my way to work so I take this as a positive sign as rainbows are very special to Josh as before he was born I saw a perfect set of three nested rainbows (our three beautiful kids?!) the day I discovered I was pregnant. There was a lovely rainbow the day he was diagnosed too so I just knew he would pull through long enough for the chemo to take effect and his lovely crystals from his bedroom at home were brought to his first hospital room and another my wonderful best friend Laura got him spread rainbows around the room and made him smile. These crystals now hang in our kitchen window and make me feel peaceful everytime I look at them.

The doctor said I have a) sinus infection as I knew hence more antibiotics and a CAT scan to check sinus damage that could be causing the infections and b) Carpal Tunnel in my right hand which will require surgery (not an option just now with three sugeries coming up for Josh and me needing wisdom teeth out...I'll get around to it one day, I swear!) so I am also on anti-inflamatories for now. Soon I may rattle!

Anika woke up in a lovely mood this morning and had to give me "lots of loving" before I could go to work. It is so nice to have kids who tell me how much they love me every day, it is so special.

I am still trying to work out how to put links to other sites on my blog other than just typing them in so I will do that for now and work out how to put in permanent links one of these days.

Imogen's site and baby Blake's (Hope you don't mind me adding these Fi and Ree.) and the site for pages on other NB kids is There are some truly inspirational kids out there and each and every one of these kids stories will touch your heart, I guarantee.

We are heading to Bunbury on Friday to stay with Peter's grandad and see his brother and his kids and also to participate in our first Camp Quality fun day! Every other event Josh has been too sick to attend or has meant a trip to Perth (not really going to happen on our income just now!) but as this one coincides with a visit we have been talking about doing for ages we are all systems go!!! The kids are so looking forward to this Bowling Day and seeing their much loved "Uncle" (great Grandad). Hopefully we will see my dad too if he can get down from Mandurah.

Wishing you an amazing day,

Hannah XXX