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Wednesday, September 11, 2013


I had a good night.  Today was hot, after a week of fall weather--gray and rainy--last week.  This week is hot, 96 degrees today, and I am happy.  I need the heat.  I got off work a little early, picked up my daughter and husband and took Lucy to the Jamison Square fountain, a tidal fountain in "the Pearl" neighborhood of NW Portland that she (and every other kid in Portland) loves to play in on hot summer days.  There is a place to buy a slice of pizza and an ice cream shop on the same block.  She played in the fountain with all the other kids, until a fire engine showed up and drew half the kids over to check it out.

I wanted to post a little update about it on Facebook, but instead saw an update from some good friends who have a son about Lucy's age who has been very sick.  He was born with a birth defect that they thought would be the worst of his problems, but he sailed through Pierre Robin syndrome without needing a trach or any interventions.  He was fine until his 1 year check-up, when his mom pointed out some pinpoint red spots on his body (called petechiae) to his pediatrician, and his slightly more frequent bruising.  By that evening he was in the PICU being treated for a severe and rare form of infant ALL (leukemia).  He has endured 2 years of brutal chemo that did put him into remission.  But now the chemo that cured his cancer has destroyed his immune system.  He has been in the hospital for much of the last 6 months with infections and systemic reactions to drugs meant to keep him from getting pneumonia, and he's now caught in a catch-22 that it has become apparent he won't survive.  So his parents posted to their friends, bravely, that they have decided to maximize the time he has, do the things that allow him to be a 3 year old boy for as long as possible, and keep him out of hospitals and stop treatment.  At this time, he has energy and is playing and laughing, although he needs IV nutrition because he isn't eating.  They are continuing those kinds of things that add to his life without subtracting a measure of misery.

It takes my breath away to imagine what his family is going through now, and has been for this entire time, contemplating losing him, desperately trying not to lose him, and then seeing that the trying isn't working and the best thing for him is to stop subjecting him to painful treatments that don't seem to be helping him.  It has to be especially painful that they wanted so badly to cure his cancer and they did, but the treatment is killing him anyway.  His parents are both nurses--I used to work with his dad in the ICU before I continued my training--and have been incredible in their ability to roll with this journey, and keep things as normal as possible for this little boy and his older brother.  They have both helped countless families through end-of-life decisions, and now have to make these decisions all to soon for their baby.

As I savor a lovely evening with my healthy and happy only child, my heart is also with my friends, who are savoring a late summer evening with their little family, trying to make the time slow down.

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