It was a sad time determining that Galloween will not happen this year. Way too much work and I am down a white cell or two these days. So, we will be taking the kids to a juicy neighborhood where our close friends live and see what kind of sugar stash we can get away with. I had one of my first "Son" discussion problems. The gist: "Patrick...what do you want to be for Halloween....A Butterfly....A Butterfly? Sure....What color Patrick...A Pink One." So how do I tell a 2.5 year old that Dad does not really want him to be a pink butterfly on Halloween and would prefer Leatherface from TX Chainsaw Masacre? Well you don't but I thought quick on my toes and we decided the MSN Butterfly would do. Man, when they said parenting was hard, they meant it. Libby, could care less what she will be as long as she is well fed. She is a Tank on a seek and destroy mission in the house.
Scoop on me. I have been pounding Gleevec for over a week now. My white counts have dropped significantly...in fact I am close to being fully compromised again. That sucks but it is the lesser of two evils. The Leukemia has been beaten down enough so that I am not in pain. The Drs. are also hoping the Gleevec heightens Graft Versus Host Disease so my dad's cells can seek and destroy. I am starting back up on some additional antibiotics as well.
I am getting an Ass-Tap this Friday to see what is in the Marrow. I expect to still see Leukemia cells (remember the sensitivity is around 1 million cells or more) but they should be in reduced numbers. After that, Hopkins is talking about releasing me to the outpatient services. Marcy and I are not quite sure what that means except we are not under the daily supervision of IPOP on the 5th floor. Scary. This is a step that we must take on the road to wellville. We should have some good information next week the outlines the next steps/milestones/risks. We are kinda in limbo at the moment which sucks.
Thats about all that is cooking these days. Speaking of cooking, I have had zero appetite and eating very little...compliments of the Gleevec I suspect. Not quite the diet I had in mind.
Take care. Have a safe and scary Halloween. Mark you calendars for next year's Galloween! Here is the link to the scary Galloween site with past pictures.
Gary, take heart...you should know that Patrick's peer, Shane Gorman, appeared today as a LADYbug. I was informed, a MALE ladybug. I understand that ladybugs come in both male and female, otherwise, there would be no little baby ladybugs. However, like Patrick's butterfly, I thought it evocative of the overcorrection to stereotypes that our society has foisted upon people of all genders...and hope next year, he's thinking more of dressing up as a caveman and dragging some little girl off by the hair to a den of evil where he'll give her some candy and..... --- OOOH! Where's Joe??? Gotta get home now!!
Love to you all --- Susan