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,