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 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,


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