A lot has changed since I wrote last week.
Our meeting in San Francisco was very informative. UCSF is where JMML
is being studied in the United States. This is where it’s at for Reese,
and we trust these doctors. We recognize that we have a big fight ahead
of us and we are gearing up for this fight. We learned that Reese has
RRAS2, a rare somatic mutation that causes JMML. Somatic means
spontaneous, random, not inherited or germline. A second mutation was
also found in my daughter, JAK3. This is what we feared and it makes her
disease more aggressive. We are resigned to do whatever it takes to
give our sweet girl the best possible treatment in this world.
Reese was rushed to the ICU at
Lurie in Chicago on Thursday while we were meeting with her doctors in
California at UCSF. Nonnie went with her in the ambulance and this was
added to my list of experiences I prayed my daughter would never see.
She was suffering from a high fever (104 on Tylenol), too low blood
pressure, stomach pains, and spots. We are still in the ICU today and
still awaiting some results. I’m not sure if we will fully understand
what did this to her little body, but the JMML is involved in the attack
on my sweet little three-year-old. We have been watching her get
pummeled by this disease and this ends, now. Because we are finally
Reese’s surgery has been moved
back to Tuesday for her double-lumen broviac (central line), and then
thank god chemo begins on Friday. While it is not protocol across the
country to treat JMML with chemotherapy before transplant, the doctors
who study JMML at UCSF specifically believe that it helps. In fact, they
are currently trying to prove that it helps, so that other institutions
will treat JMML immediately with chemo. The goal is to get her to
minimal disease burden going into transplant. She will have three
different kinds… beginning with Azacitidine (German protocol) and
then Cytarabine and Fludarabine (US protocol.) I am trying to avoid
googling the side effects and instead focusing on these being Reese’s
best hope of going to transplant with the least amount of disease burden
as possible. This will increase our chances of success, and we will be
celebrating our first victory over JMML when we see her ever falling
numbers improve with these therapies!
Today we were supposed to fly
to Disney World. As we sit in the ICU and the hours tick by, I think
about the alternate world… the world that makes sense- where my
wonderful girl had wonderful days without suffering. In this world, I
know exactly where my family would be because I designed the trip with
my dad, down to the last fast pass. I know exactly which princess my
preschoolers should be lunching with and at what moment they would have
been shaking Mickey’s hand. I know when we would have chatted with Crush
the Turtle, giggled with Elsa, and rode the ferry from our hotel to
Disney, while listening to their little gasps of excitement as they
watch the castle grow nearer. To some, Disney is difficult, and not an
oasis of childhood pleasure. Maybe it’s because some of my favorite
memories come from these trips as a child… but I would take their
excitement at Disney over any holiday, any day. We will return to this
alternate world, the right world, where my daughter thrives and this is a
distant memory. Which brings me to my final point.
Right now, Reese’s favorite book is “We’re Going on a Bear Hunt” by Michael Rosen. To quote this book..
We can’t go over it.
We can’t go under it.
Oh no. We’ve got to go through it.
And through it we go, hand in hand.