Wednesday, April 9, 2008


Well we have been busy. We did an interview for 2 days in NYC with 60 minutes Australia and then they flew Dylan and I to Portland Oregon to meet fellow Australians who have brought their 9 year old daughter to the United States for cancer treatment after exhausting all options in Australia. Tyla Rose Brown has a cancer called Rhabdomyosarcoma, which is a cancer that effects the muscles, she was diagnosed 2004, just like Dylan. Their family, like us, is also reliant on fundraising, Donations can be made at any Commonwealth Bank in Australia to the Everingham Tyla-Rose Brown Trust, BSB 062648 account number 10105014, currently Tyla Rose does not have a website. The family has come from Port Macquarie, in NSW and has had some media attention in the past, here is one newspaper article HERE. You will be able to see their story along with an update on Dylan on 60 minutes in Australia. I doubt it will be aired in the USA, but it will be available to view on the 60 Minutes Australian website once it goes to air…air date TBA. The 60 minutes crew were great, treated us like royalty, Cain was so thrilled to meet Peter Overton in person! It was fantastic to meet Tyla Rose and her family, we have a lot in common and like with Bronte’s family, we will be bonded for life in our situations. Oregon was a beautiful city, a lot different to New York. We spent 2 days filming along side Tyla Rose and made a trip to “Build a bear” who donated the bears to the kids. We also enjoyed a clown show at the RMDH in Oregon. 60 minutes allowed us to stay a few extra days to enjoy the city and we were also able to visit Oregon zoo. Thank you to 60 minutes and Build a bear and also to the Brown family for welcoming us into your lives. Photos of our Oregon adventure can be viewed HERE. Dylan has a CT scan today and an MIBG scan tomorrow, if all is still stable, then we will continue with the plan of harvesting stem cells in the next few weeks. Bone Marrows and a urine collection will also be done at this time. Dr Modak has also discussed the plan to put Dylan on Celebrex (yes the arthritis drug that has been shown to stop blood supply to minimal diseased areas) and Thalidomide (same theory and yes... the one pregnant women took in the 50s that caused birth defects) in an effort to try to keep Dylan in his stable state until the release of the vaccine therapy. Currently this combination, known as TTC, is usually given with Temador (a chemo agent) but we may refrain from that complete combination due to Dylan’s platelet counts. These drugs are given orally and used in the same way as Accutane, to keep the disease stable, but not actually decreasing disease. Nick Franca and Sydney Sims are currently on this drug combination and doing well.

It is with great sadness to tell you all about the loss of Justin last week, please pray for his family at this awful time, no parents should ever have to bury their child, I cannot even begin to imagine their pain. I will always remember Justin sitting in our room playing on my computer, addicted to a game called Farm Frenzy.