Thursday, 17 November 2011

Blog: November 2011

16th November 2011
Rafael’s GP is holding a charity ball this Friday night to raise funds for 2 of their patients and this year they have nominated Rafael as a recipient – how sweet!!
I have put together a great powerpoint presentation to be played and I asked Prof Hicks if he’d like to add a few words. In his usual graceful style, he promptly replied – he’d be delighted! Here is what he wrote :-)))) 
Rafael is a pioneer in the spirit of Indiana Jones. Armed with his trusty Nintendo, he is journeying into uncharted territory, blazing a trial that others may follow.
It takes a special kind of parent and a special child to embark on new therapies where there is only an idea and the need to rely on first principles. Rafael has trodden the conventional path in his efforts to beat his neuroblastoma but has recently started on experimental therapy first used internationally in neuroblastoma patients at the Peter MacCallum Cancer Institute.
Childhood cancer is a disease that is confronting to all involved.
Neuroblastoma is the most common of childhood cancers, arising in the part of the nervous system that regulates our response to stress or danger. As such, they both release and respond to chemical signals.
Although the more aggressive components of these cancers respond well to chemotherapy or radiotherapy, there are often elements that more closely resemble the normal cells from which they arose. These cells are much more resistant to the insults that kill actively growing cells and often remain after even the most aggressive of treatments.
By using the ability of these residual cells to concentrate certain radioactive chemicals, it has been possible to control Rafael's disease.
The newest of these therapies involves using a radioactive peptide, a small protein-like chemical, which binds to a receptor on the surface of neuroblastoma cells. Like a messenger carry a bomb into a building controlled by a key-card entry, the radioactive treatment is only delivered to cells that have the appropriate code.
Although preliminary, the results of this therapy appear very encouraging and other facilities in the world are starting to trial this kind of therapy.
Rafael brings much joy to his family and friends with his perpetually happy disposition and inspires his medical team to leave no stone unturned to find a cure for this devastating disease. Cure or not, every day that he has a good quality of life is a precious day and the support of the community in his quest is vital. We all need to believe that he will emerge from the Temple of Doom still smiling and a master of Super Mario.
12th November 2011
Gabriela and Rafael continue to LOVE Little Athletics! They look forward to their early starts on Saturday mornings. Rafael was very excited that he even beat 2 other boys in the 400m race!!!
8th November 2011
Mum had a carcinoma removed from her face and she is having so many problems :( It keeps bleeding. I even had to take her into ER the other day :( Hope it gets sorted soon!
4th November 2011
No holding the little guy down! Today he and Gabriela went off to Baccus March for 3 days of fun at Junior Camp with Camp Quality!!
They started at Werribee Zoo, so they were VERY happy :-)))
3rd November 2011
Finally heard from the hospital after much emailing and calling – Rafael had the tube removed today:) They didn’t stitch it up due to risk of more infection.
He asked “does this mean I don’t have cancer now?” :((

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