Wednesday, December 24, 2008
Wednesday, December 10, 2008
Friday, November 28, 2008
Saturday, November 8, 2008
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.
Wednesday, November 5, 2008
Sunday, October 19, 2008
Tuesday, September 16, 2008
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
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...
Monday, August 18, 2008
Wednesday, August 13, 2008
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
Friday, August 8, 2008
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.
Tuesday, August 5, 2008
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 www.Quilts4Kids.com 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
Friday, July 25, 2008
Friday, July 18, 2008
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
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
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
Tuesday, July 1, 2008
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...