My daughters lost a classmate, fellow girl scout, and good friend yesterday. A mother and father lost their child, a brother lost his sister, and our community lost a thoughtful, brave, and infectiously sweet young person. Our hearts are broken. 

Rachel Anne Reynolds

A little over 2 years ago, Rachel was diagnosed with Acute Lymphoblastic Leukemia (ALL).  My first thought was - it will be a tough battle, but most cancers are treatable by now.  Indeed, the Wikipedia entry for ALL states an impressive statistic: "≥94% of children have continuous disease-free survival for 5 years and appear cured.".  But Rachel had a different kind of ALL that involved a chromosomal abnormality called Philadelphia Chromosome Positive (Ph+), which affects 2% - 10% of pediatric ALL cases.  This changed her prognosis from 'great' to 'dismal'.  Like Rachel's mother, I'm an engineer.  I'm not as good (nor as interested) as many people are at comforting, I want to fix.  So I researched and contacted a doctor who specializes in this area.  This was his reply:

"At this point, my recommendation is that chemotherapy be given as per the AALL0031 cohort 5.  This therapy has given results as good as allo BMT with a 4 year EFS of 75% when analyzed with the  fall 2010 data set.

The AALL0622 trial is a good one that will probably give a better response and is open at National Children's.

The salvage rate is good if there is relapse after chemotherapy and then BMT can be considered as a second line of therapy."

This made me feel useful, and I passed the information on to Rachel's parents.  They had been given similar advice, and they pursued one of these treatment options, not that I would understand the difference, but 75% is a hell of a lot better than "dismal".  We watched Rachel go through a year of grueling, aggressive chemo treatments, never losing her high spirits or amazing smile.  The girl scout troop had a walkathon to raise money and collect DNA swabs for Be The Match; if the chemo didn't work, Rachel would need a bone marrow transplant (BMT).  Most of the girl scouts sold knick-knacks, I collected DNA swabs.  I wish I could have given her my own bone marrow, it's served me pretty well.  I wanted so badly to fix this.  Just about a year ago, Rachel disobeyed her doctors to attend her, and our daughters', elementary school graduation.  She lit up the room.  We knew there would not likely be another for her.

A few months ago, the researcher I had contacted celebrated approval of these previously experimental treatments by the FDA.  But Rachel was in the 25%.  It didn't work for her.  Last summer she received a bone marrow transplant.  Not mine.  All I could do to be helpful was put Rachel's family in contact with my sister-in-law, who is on the board of the (world renowned) hospital where the transplant was done.  That was actually helpful, my sister-in-law and her family helped them settle in and navigate the experience - with a friendly face.  But it wasn't the fix I so deeply wanted to find.  Rachel's mom haunted my heart, how can a mother possibly live through this?  If it could happen to her, couldn't it also happen to me?  I can't even think about it, it's a nightmare.  It's Mrs. Weasley's boggart in real life.

Rachel attended a few girl scout events this year, I last saw her when we went ice skating.  I emailed her mom before my husband and daughters went to the father/daughter dinner, my girls were recovering from colds so I wanted to make sure it was ok for them to go if Rachel was also there.  She said I should ask my daughters not to hug Rachel, as she had had a relapse.  My heart sank.

I had to check out at that point.  When my brother died at age 29, people would try to express their condolences but get choked up because they couldn't figure out what to say.  I ended up comforting them.  Rachel's mom has enough to take care of, I need not add myself to that list.  So I stayed away, let her take care of her family and herself instead of my mind-spinning nauseous getmeoffthisrollercoaster self.  I can't fix shit.

The girl scouts had a ceremony one week ago today to bridge from junior to cadet.  Rachel wasn't there.  That was when we heard what we already knew.  She was dying.  We told our daughters on Sunday.  Rachel passed away on Wednesday.

There are researchers out there trying to fix the other 25%.  I hope they succeed.  It's too late for Rachel, but somebody should find a way to fix this.

Looking for new targets to enhance the therapy for childhood Ph+ acute lymphoblastic leukemia