Friday, August 8, 2008

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,


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