An unexpected turn

October 16, 2010 -- Peter's 16th birthday.  A new camera for the trip to India.  A bowling outing with Annie, a video game from Leo.  Dinner with family and friends at India Garden, his favorite restaurant.  His traditional pumpkin pie in lieu of birthday cake.

October 22, 2010 -- Appointment with endocrinologist at Children's Hospital.  History is taken and tests are ordered.

October October 27, 2010 -- The phone rings.  It is the pediatrician's nurse.  Blood results sent from Children's Hospital are extremely abnormal.  Chris writes down the counts and goes to Google.  She soon realizes that Peter is suffering from severe aplastic anemia (bone marrow failure). 

October 28, 2010 -- Chris spends another day researching potential causes and becomes certain that Peter has a rare and fatal genetic disorder, Fanconi's Anemia.  This diagnosis ties together so much of his history and characteristics.  Because his platelets are so low, Chris call's the pediatrician for advice on activities.  He agrees that Peter should do only light exercise in gym, and stop riding his bike for a while.  Peter takes it all in stride.  He loves to ride his bike, but "it's getting cold anyway, Mom".

October 29, 2010 -- First visit to a pediatric hematologist confirms Peter's very low blood counts.  The doctor tentatively rules out leukemia after looking at a blood smear.  Fanconi's Anemia is a possible diagnosis, but other possible causes must be considered too.  A bone marrow biopsy is ordered. And what about the India trip?  We'll see.

October 30-31, 2010 -- Chris reads everything she can about bone marrow failure syndromes, including every blog on the Fanconi's Anemia family support page.  Chris and Carl discuss the pros and cons of aggressive care for Peter, including a bone marrow transplant in the unlikely event that a well-matched donor could be found.  They immediately agree that they want Peter's happy life to continue unchanged for as long as possible.  Even a simple blood test is terribly stressful for him.  This boy should not spend the last part of his life in and out of hospitals, living in pain and fear.  Quality of life is more important than quantity of days.  As for India, he'll never be healthier than he is now. He wants to go.  He should go.

November 3, 2010 -- Peter has his bone marrow biopsy at Lutheran General Children's Hospital in Park Ridge, IL.  It's a tough procedure, but he is well-sedated.  Afterward, he inhales a burger and fries from the hospital kitchen, and then consumes two more burgers and more fries from McDonalds.  He's allowed to stay home for another day because he's "sore".  He tries to parlay this into another day off, but Chris sends him to school with a warning to stay out of the nurse's office.

November 8, 2010 -- Bone marrow biopsy results are in, and the news is shocking.  Only 5% of Peter's marrow stem cells are still alive.  Few new cells are being made.  A DNA breakage test for Fanconi's Anemia is finally ordered, though the results won't be back for several weeks.  Chris tells the hematologist, in private, of the decision against a bone marrow transplant and other destabilizing treatments.  He is very supportive.  As for the trip to India, why shouldn't he go?  It's "Make a Wish" time.  Chris writes a note to Peter's special ed teacher, letting him know what's going on, and makes an appointment to meet with the school nurse later in the week.  Chris calls her Indian brother, a cardiac surgeon in California and reviews the blood and marrow findings.  He says that Peter's counts are likely to go down fairly rapidly.  He is a strong supporter of the low intervention plan.  He suggests a meeting soon with hospice.  Although these things are unpredictable, he believes Peter won't live beyond a few more months.  Chris talks with the pediatrician's nurse about antibiotics for the India trip.  Chris rattles on about the test findings and everything she's learned online.  The nurse gently suggests that it may be time to stop being a researcher and just be a mother.

November 9, 2010 -- Peter's monthly psychiatrist appointment.  Peter mentions that his blood is sick, but doesn't want to talk further.  The psychiatrist feels that opting for supportive care is a wise decision and very much in Peter's best interest.  He's been seeing Peter monthly for the past 8 years, and he understands the quality of life issue better than anyone outside the family.