The Ronald McDonald House Band played at Carnegie Hall on April 27th with the New York Pops. Cain and the rest of the crew were over the moon! Everything went well without hiccups. I did get my hands on some photos (shhhh) you can view them HERE. The band has a gig at Radio City next week, with Garden of Dreams. They are a little worried as they are lacking a drummer and have issues with the song and lots of homework. They were going to cancel but I think we have convinced them that all they need is a little coaching on their time management skills. Tonight we will try and get them all to have their weekend homework done and that will leave them with the entire weekend to get into their music ready for the rehearsal on Monday.
Swine Flu has hit many countries and as you have heard on the news many are sick in New York where we live. The current count in the US is 141 and 1 death. It was decided to keep Dylan home from school this week but I think we will let him attend school next week unless things change. The swine flu link above, shows current information from the CDC. Today Dylan had a PET scan to finalize his routine work up, he is doing great and continues on the Perifosine treatment.
Please pray for all the children, but these 5 brave souls need special prayers at this time. Jake is having high dose ICE chemo, Jake has been battling NB for several years and is good friends with Cain, we just love him to bits. Mason relapsed and is now in hospital with fever and neutropenia after chemo along with Dylan's special girl Megan who also relapsed and now will spend her birthday tomorrow in the hospital instead of the planned dinner date with Dylan. Dylan's best friend Joseph in Texas is also in need of prayers, he is starting to produce his own bone marrow and after his donor transplant, this is not what they want to see. He will need more chemo now, more hospitalization and possibly more donor marrow. Joseph's condition scares me terribly, we all love this boy so much. The one that needs the most prayers right now is Jack from England who has spent many months in Vermont having treatment and clutching at new clinical trials offered there. I just heard that he is in ICU, septic and the Neuroblastoma is consuming his little body. He is in a lot of pain and his family continues the roller coaster they have been on for so many years. I just pray that he can get the pain levels to a comfortable state and that his parents find some peace during the hardest period in their entire lives.
I have added a few more kids to House Heroes Page, so please check them out.
Last Saturday we joined the Parkinson's walk in Central Park to support our dear friend Kevin who lost a brother to Neuroblastoma 30 years ago. Kevin is now battling Parkinson's and is only in his 30's. The day was wonderful, it was a great sunny Spring day and it was really nice to see Dylan learning how it is so important to support other incurable diseases while battling his own. Later that afternoon we went to The Australian to join fellow Aussie's for Anzac Day. Photos can be viewed HERE
Another blow for the Maynard family in Long Island. As many know the Maynards are not only Cain's god parents but also our guardian angels during our stay here in New York. Lynn had a stroke last year and is still struggling with rehab to get herself back to functioning without assistance. Lynn's parents returned from Australia to spend the next 6 months helping Lynn, but now Lynn's mum, June, has ended up in ICU after emergency surgery involving a kidney stone blocked and ruptured. I always question why bad things happen to such good people, life can be so unfair. Please keep Lynn and June in your prayers also.
Bronte Kelly from Australia is arriving in NYC next month for follow up surgery, we are really looking forward to seeing them again, and are so glad they raised enough funds to continue her much needed care.
Isaiah from Australia continues his treatment here in NYC, look for their story in Australian magazines in the coming weeks. Please pray that they can continue his life saving treatment without the continued financial woes that international families continue to battle day in and day out. This added stress is a parents nightmare. I still get so angry that a child's life comes down to a dollar sign, what a very sad world we live in.
