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...