Peter Pan II

We had a meeting with Doctor Baruchel on Friday to discuss what they have planned from here with Shania. Now that Shania's bone marrow is very compromised because of the chemo wiping it out last cycle, and her having to get a transplant again. The plan that they could come up with is to use a drug called Rapamycin (Sirolimus), this has traditionally been used to prevent rejection of kidney transplants and also used sometimes to treat psoriasis. It is in a class of medications called immunosuppressants. It works by suppressing the body's immune system. It comes in liquid form which is good because Shania doesn't like to take pills. Shania's blood work has bottomed out and started to come back up, after she stopped taking the GCF(blood booster). This drug has never been used on Neuroblastoma before, and in the lab it has shown to kill off Neuroblastoma cells. So Shania will be the first person to ever have used this drug for this purpose. Doctor Baruchel wants to start her on this drug either today or tomorrow. The other drug he wants to put her on once her blood work has recovered more is called Vinblastine, this drug has never been used on a Neuroblastoma patient before either. So it will be charting unnone territory from here on out for us as a team. This drug has been used for Hodgkin's disease, testicular cancer, AIDS, non-small cell lung cancer, bladder cancer, head and neck cancer, cervical cancer ect... it will be given intravenously. This drug slows the growth of cancer cells in your body. We are hoping that these drugs will slow or stop the spread of this disease which will buy us some precious time. This cancer is spreading so fast!!! Shania got radiation on her upper left femur on Friday to ease the pain there. We were hoping that she would feel well enough that she could go to Sam's Day Fun Fair For Neuroblastoma Research, but the inflamation from the radiation was causing her to much pain. Shan and I went to support this great cause, Shan had a blast playing all the games and watching the shows they had. Shannon made a wooden box with a sliding top on it for Shania. She also bid on some TY Beanie Babies in the silent auction. She won one bid for Three beanie baby bunnies and gave Shania one of them. It was really uplifting to see so many caring people come out to support this great cause and a special boy named Sam on his birthday. Shania was feeling well enough to come home on a day pass Sunday, she was still in quite a bit of pain and had to go straight from the bed into a wheel chair as she is not able to walk at this point. She finds it painful sitting up right also because she has been in bed for so long. When we got home she just wanted to go on the floor and play with her Polly pocket dolls and after that she crawled across the floor to the computer to play a game called Roller Coaster Tycoon, and with great effort and with no assistance she got up into the chair. She will not let us help her by lifting or supporting her at all. She wants to do it all by herself. Its hard because we want to help her so much, but I guess it's a good thing because it will help build up her strength again. It was to painful for her to sit so I took everything down on the floor and she played it there. This game lets you design your own amusement park and she loves to spend hours doing this, it is quite in detail right down to kids throwing up on the side walks blahhh iggg yuccc. Shania came home Monday afternoon also on a overnight pass because she had a CTscan at 2:30PM and pulmonary function test at 3:30PM, to make sure everything is OK to start her on the Rapamycin today or tomorrow. Before we went for the tests yesterday Shania mentioned that she wants to write a Peter Pan sequel, She had mentioned this before we went into the hospital five or so weeks ago, and we never got a chance to start doing it. So she watched it again, and was writing down all of the characters names to start Peter Pan II. I will ask her if she minds if I put it on the blog as the story goes along. When Shania came home yesterday there was a beautiful gift waiting for her, it is a Lamp with Tinkerbell and Sunflowers up the base of it and a flower petal as the shade. Shania would like to thank the Teachers at Reesor Park for this very thoughtful gift, She is using it right now. Shania didn't want to sleep in her bed because she says it's to painful to climb up on her bed, so she is sleeping in the living room. Shannon asked if she could sleep with her, so how could we say no. Also whiskey had to get in on this to, and is sleeping on Shannon's mattress with them. They are all listening to classical music on the radio as they sleep. It is really a nice sight to see after the last five weeks in the hospital.

I do believe in Shania I do I do!
I do believe in Shania I do I do!!
I do Believe in Shania I do I Do!!!
Sincerely with love.
Shayne,Karen,Shania&Shannon.