Christmas 2005

Our Christmas was excellent.  The family visited early (12-22-05) and Sharon’s mom stayed over for Christmas.  Many other guests came and showered us with love, prayers, and excellent gifts!  Sharon and I didn’t have much time to prepare for Christmas this year, but everything ended up being perfect.  Our family and friends were overly generous.  Thank you!  The Everett PD gave me Christmas Eve and Christmas Day off.  A HUGE thanks to Molly Spellman, Craig Davis and Mike Bernardi for taking time away from their family so I could be with mine.  We relaxed at home and had several family meals together.  It was really special.  All of the kids (Ryan included) were with us this year.

Allex has been doing well but her overall health is declining.  We settled into a bumpy patter the last two weeks.  Radiation therapy appears to be working, as the pain in Allex’s left hip and knee are gone.  Of course, the generous Morphine dose may be helping too.  Chemotherapy continues.  Just when we were about to give a  “full head of hair” update, it started falling out in big clumps- not a surprise, but not a welcome thing either.   With it has also come intense headaches and nausea.

Allex continues losing weight and is down to 46.4 kg (102 lbs).  During our pre-chemo office visit today, El doctor “incarcerated” Allex on the spot.  Not quite a medical emergency, but it was hopefully a quick fix.  Allex resided at Children’s to gain weight and get used to having the tube.  She came home on Thursday evening with all the new feeding tube apparatus and schedule- as we were just figuring out how to manage, her body decided it had other plans and the feeding tube was dislodged with a massive nausea wave.  As you can imagine, that meant only part of the tube was expelled and it then required it to be finished manually.   

Friday took us back to Children’s after the radiation treatment to have the tube re-placed, but Allex temporarily refused when her regular doctor was not available- she claimed she was highly motivated to eat as much as necessary to avoid having the tube -- given her age, the on-call physician gave her a reprievale until her next appointment with her regular doctor.  Problem is that requires about 6000 calories a day-not something that is realistic.  So it will be Wednesday when she is re-admitted and we start over again.  This time she will probably stay an inpatient for 2 or 3 days (or longer) to make sure the tube stays in place.

Overall we don’t have any additional good or bad news.  Weekly blood draws indicate decreases in all the various counts, but nothing critical yet.  We evaluate how effective the radiation and chemo were in a few weeks and will have additional information then.  Sharon continues the process of contacting hospitals in the US with solid cancer programs to see if anyone has additional information.  Other than that there isn’t much positive feedback to provide yet.