For anyone who hasn't heard, this weekend in Rosebud, Victoria, Australia - there is an unreserved auction happening of a lot of land (799m2) at Peninsula Sands (www.peninsulasands.com.au or www.oliverhume.com.au)to benefit Dylan. An enormous thank you to Pat LaManna and his family for making this happen, and for this very generous donation.
It's happening Saturday February 19 onsite at Jetty Road, Rosebud at 11am. Please spread the word and come and bid generously!
Today it rained all day in New York. When you are stuck in hospital it is always better to look out the window and know that you are not missing out on a nice day. We are still waiting for some proper snow. We love seeing the snow, it’s so magical. The snow has all melted in the city streets but it is still in some places, like Central Park. Dylan had a rough night last night. His pain came at full force, and no matter how much they increased the morphine, it kept him up all night. The doctor came and saw him twice by the nurse’s request, through the night. Finally by 6am this morning they seemed to have found a more comfortable morphine dose. The pain is still there but at least he has stopped moaning while he sits still. Problem is that is that this much morphine will constipate him. Dylan is drinking apple juice and sprite but is not allowed to eat yet. He said to me last night “I hate this t.v” I said why? He said “because of all the food ads!” Poor kid is hungry. He keeps telling me what he wants when he can eat, so far it’s hot dogs, pizza, burger king, dads pasta, chocolate mud cake and butter cake mix!
They took an x-ray and it revealed that his abdomen is full of gas, which is expected after this type of surgery. His whole right side is very swollen and his feet are like balloons, which is all fluid. When Dylan went into surgery his weight was 17.5kg and after surgery it was 19.2kg, today he is at 18.3kg. The surgeons said that Dylan must walk despite the pain because it is the only thing that will get the bowels working again and relieve him of the gas and pain. It will also help him to absorb the fluid. So against all Dylan’s protests, I had to force him to walk a lap of the ward, three times today. Each time, we have a break half way at the playroom and choose a new video to watch. Each walk seems to be easier.
Dylan is still miserable but he is happy watching videos and it only hurts when he tries to sit up or when I make him to walk. But I actually had him laughing today at the movie “Bruce Almighty” with Jim Carey. He just loved the dog using the bathroom! The hospital here is fantastic, the nurses and doctors are so helpful and truly live up to the great reputation that this hospital has. Today is Valentines day and Dylan has so far received 2 cards and a box of sweet heart chocolates from the hospital teacher. In the USA the children are very much a part of celebrating the day, unlike in Australia where it is only really for teenagers and adults in love. At the hospital they have karate lessons every Monday at 11am. This is great because Dylan has always wanted to do this and they have told me that even if Dylan is not hospitalized, he can still come in for the lessons in the playroom.
Dr Kushner came to see Dylan today and said that at this stage they are planning to start chemo on Wednesday 16th or Thursday 17th. The chemotherapy is Topo/Cyclo and Vincristine. This will be a 4 day round followed up with GCSF once his blood counts fall later in the week. I am just so overwhelmed with confidence in this hospital, it’s just amazing. Everyday I meet someone new who tells me about yet another success story of a child being cured at MSKCC after they were told at other hospitals there was no hope.
I want to thank the Australian Consulate in New York, they have been so supportive and kind. They visit Dylan and me in the hospital regularly, even on their days off. They have provided us with great resources and offered us warm Aussie friendship. I must admit, it is nice to hear an Aussie accent for a change.
I am sorry if I haven’t responded personally to emails but I still have limited internet access. I now write my journal on Dylan’s laptop and then send it to a removable drive. I then take the drive to an internet connected computer within the hospital to update the site, this way time away from Dylan is minimal.
I have changed a couple of photos in the view photos section, I will continue to do so with every entry, but I will leave the first one that shows Dylan before diagnosis...cause I love it.
