In the last month, Nate

• Turned 6
• Had his first big birthday party with friends
• Graduated from kindergarten
• Spent a terrific week in San Diego with my extended family
• Got to see his old friends, the Pearsons
• Learned a few new things about black holes
• Started adoption paperwork for a new cat

Man, life has felt not only normal but pretty darn good!  I’ve posted some new photos if you’re interested. 

Though we’ve been doing a pretty good job ignoring it, we know leukemia is still lurking in the shadows:

• Another maintenance steroid pulse (9 of 34) this week.  We know the drill - early bedtime, extreme moodiness, food fixations.  This month it’s tomatoes with lots of salt – could be worse!
• Stubborn rashes in strange places (e.g., the soles of his feet, inner elbows).  Docs don’t seem worried as long as he's not too uncomfortable.
• 6 hours of neuropsychological evaluations over the past week … goal is to establish a baseline, since intrathecal chemo can sometimes cause cognitive issues later on.

All told, not a bad tally:

Awesome, cool, excellent stuff:  7

Weird, bad, annoying stuff:  3

Thanks to everyone for helping us through the anniversary of Nate’s diagnosis – it was harder than we expected.  Your wonderful words & hugs (both real & virtual) have really lifted us up.

In recent weeks a number of people have asked how much longer Nate will be in treatment.  Assuming all goes smoothly, he should be done in August 2011.  It’s a long, arduous journey for these kids – especially the boys, whose testicles (aka leukemia hideouts) entitle them to a bonus year of treatment.

Some of you have gently asked about Nate’s prognosis.  For kids with Nate’s type of leukemia and risk factors, we've been told the 5-year event-free survival (EFS) rate is 80-85%.  This means that 80-85% kids survive treatment and do not relapse for 5 years after their first remission (which typically comes within a month of diagnosis).  Since most relapses (though not all) happen within that timeframe, EFS is typically considered a proxy for overall survival. 

There aren't many stats available on long-term survival - probably because most of the kids diagnosed 30-40 years ago aren't with us today.  Will Nate go to college, become an astronaut or NASCAR driver, get married, have kids, lose his hair (the normal way), become a sweet old grandpa with a big tomato garden?  Only God knows for sure.  For now, we’re focused on two dates:

August 2011, Age 8 ... off treatment

June 2013, Age 10 … 5 years after remission

Until then, it’s day by day by day.  Boy, are we enjoying these days with Nate.  :-)

Shannon & Spence