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. http://www.youtube.com/watch?v=9Wwi87drDKk

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