Friday, March 11, 2005

Platelet transfusion - MIBG scan tomorrow

Dylan and I are very pleased to be back at Ronald McDonald House. We miss Aileen, Nadia, Nicki and Kerry who were all so wonderful to us for the month we were in patients at MSKCC, they are very dedicated nurses with hearts of gold. Last night, Dylan took off his bandages from the surgery, he was so brave. To my surprise, the surgery line has healed up beautifully and to me, it looks like even scaring will be minimal. The incision was very long, from his belly button across and up his left side, ending under his shoulder blade. But it is so clean and neat! Dylan is still getting used to his new G-tube, and it is still very tender. The issue for Dylan at the moment is his weight loss, he is now down to 15.6kg, so my mission at the moment is to fatten him up as much as I can in preparation for the next round of treatment. It is very hard because things taste very different in America and things we buy to eat, are totally different that what we expect. Even the mayonnaise tastes different and that upsets Dylan because he is a mayonnaise freak. As you can imagine, it is getting very expensive as Dylan won’t eat most things I buy and they go to waste. So far his favorite is Dominos pizza but he is getting sick of it now, so we are on the hunt for some pasta. I picked up some water melon and apples today and he has enjoyed them, but they won’t put the kilos on.

Today we went to hospital at 9am for a finger stick and the results showed that his platelets were 17, so Dylan had another platelet transfusion. Dr Modak said that the CT scan showed NED (No evidence of disease) in his abdomen and chest, which is a great result. He is concerned about how much this round of chemo knocked his platelets around, so the next stage depends on tomorrows MIBG scan, which will show if any disease has decreased in the bones. If there has been a response to the last chemo then we will continue for another round, if not then Dr Modak said we may change the chemo protocol or start on MIBG treatment. Dylan had his Insuflon removed as GCSF is complete now that his counts are up. At 3pm Dylan had the MIBG contrast given in preparation for tomorrow’s 10am scan, we then headed off back to Ronald McDonald House.

When we arrived back we were surprised by a box of goodies from Missy and Dan, who have been staying at RMH with their son Ryan. As they were heading back home, they left us great supplies to make our stay more comfortable, great things that I did not expect…thank you so much! To visit Ryan's site:
Everybody in the U.S has been so helpful and kind to us, it’s so overwhelming. A huge thank you is in order for Natasha from California, who did something very special for us…Thank you, your amazing! Jim from ‘Operation Oz Kids USA’ and Qantas brought us phone cards and wonderful toys for Dylan, what an amazing man. Thank you so much Jim, your generous dedication to us is incredible. Jim’s website is down at the moment but I will put a link to his site on here as soon as it is up and running again. Jim is also organizing for Dylan’s feed to be sent to us via Qantas and is responsible for Cain’s airfare being donated. I want to also thank Michelle who sends us the most beautiful, bright and cheerful cards and gifts, she really is a gem and very talented with her creations. Dylan’s Chemo Angel Annie and Card Angel Dawn have also been sending cheer mail along with many other people (a lot within the U.S) that delight us with cards and gifts. I have them pinned up all around the room so it reminds us just how much people care and support us. Words cannot express how much this all means to us, I am trying to reply to everyone but I sometimes misplace the addresses etc, so I apologize if I have not replied, but please know that I am eternally grateful. Even the messages left on the guestbook make me smile, and give me the strength to continue, thanks to everyone. Rebecca and Rene continue to support with visits and phone calls. I have also heard that the Consulate is having a cricket match dedicated to Dylan, I will post the details when I receive them. I would be lost without them because I know if I get into any problems that I can count on them to help me out. Greg, Lynn and Thomas have returned to Australia to visit their family, I hope their trip was smooth and that they return to New York safely. Happy Birthday to Donna, our beautiful friend bravely fighting Osteosarcoma back in Australia, she just turned 15:
I heard that the Comedy night at the “Comics Lounge” went really well, thanks to all that supported that fundraising event for Dylan.