Allex

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.

December 2005

Thursday December 8 was about the toughest day of our lives.  We met with Allex’s team of doctors at Childrens Hospital in Seatlle led by Dr. Blythe Thompson along with all of the other team doctors, nurses and social workers.  The final diagnosis is indeed Adenocarcinoma – stage 4 with lung cancer being the primary source.  Everyone agrees this is something that NEVER happens to healthy 17 year olds.  The cancer is aggressively flowing throughout her body.  The whole diagnosis and types/locations of cancer are extremely rare.  She has treatable tumors in her brain, tumors in her bones at the shoulders, hip, ribs and pelvis as well as 2 places in her spine.  The tumors in her brain are the most crucial to treat since they are in areas that control primary functions and are rapidly life threatening.  Her lungs are also filled with tumors that may respond to the Chemo, but will never be cured and will eventually cause her death.

Over the past 3 weeks we held onto the slim hope that aggressive doctors and treatments would be rough but provide a positive outcome.  Yesterday our hopes were dashed with the prognosis of 8-10 months.  There is no cure at this stage and treatment is solely intended to prolong life and decrease pain.  For the time being Allex will remain an outpatient and her treatment includes 15 sessions of spinal and hip radiation plus a specialized brain radiation session, called Gamma Knife.

Chemotherapy begins next week and will consume each Wednesday.  Although the side effects are severe, the hope is for time and her young body to respond.  After the initial rounds of radiation and chemotherapy we will evaluate where we stand and assess Allex’s quality of life to determine if additional treatments will be given.

Friday felt like a day that stood still.  We checked into Harborview Gamma Knife center at 7am and did not leave until 8:30pm.  Lots of stress and unknows along the way.  We went in knowing there were 3 major tumors in her brain, but the mornings MRI showed 9.  We knew there was one sitting within the area that controls major functions like her heart and breathing, but we did not know about the one on the brain stem, among others. 

Allex was very brave during the process of having a metal headpiece stabilizer attached with screws into her skull.  Doctor said she did not make a sound.  Much better than the other patient who was not doing so well.  To make matters worse, there was equipment malfunctioned -- a broken screw -- in the machine part that loads the Gamma Knife head pieces into place-they weigh 350 pounds and Allex was going to be using 3 different pieces during her treatment.  Luckily the staff had a backup plan and after a few hours delay and the patient who was scheduled to go first, we finally began our 4 1/2 hour wait of her surgery.   

To date Allex has chosen not to be involved with decisions or treatment selection.  However, she understands the global picture and possible outcomes.  We are keeping the gloomy prognosis from Allex for the time being.  Ignorance is bliss in this case.  Allex needs the hope if there is any chance for a positive outcome.  We dread the day hope runs out.

Yesterday was a tough day to say the least…

We have daily radiation and weekly chemotherapy scheduled.  Juggling everything is getting interesting and we try hard not to leave anyone out (the kids).  But we know the day the juggling is over will be the worst.

Thank you to one and all for your prayers and support.  And Thank You to the guys at Graphicode for finding a laptop for Allex (and everyone else who offered to loan one) and to The Everett PD for coming over while were at Harborview and putting up a beautiful Christmas tree for us!  It definately brightened Allex's spirits when she got home!  She said to pass along a huge hug to all of you!