Status Report

Dear Family, Friends and Supporters,

We are through the initial phase of Andrew's treatment and wanted to take a moment to share
with you what that means, as well as give you a sense of what is in store next for him and for us.

Since January, Andrew has undergone six rounds of what is called Induction Chemotherapy.  The
purpose of the first five rounds was to reduce the size and change the consistency of his tumor in
order to make it operable.  Andrew's tumor responded quite well to the chemotherapy and, as you
know, his remaining tumor was successfully removed several weeks ago.  He then underwent his
sixth round of chemotherapy to try to clear any residual disease left after surgery.

Chemotherapy has cost him his hair, eyebrows and eyelashes, which he doesn't seem to mind, but
which costs us a lot in sun block and baseball hats.  It has also cost him his appetite and a lot weight.
We used to have firm eating standards in our house, but those have slowly fallen by the wayside
since January, and we now find ourselves eating marshmallows for breakfast and getting overly
excited when the magic words, "I'm hungry," come out of his mouth every few days.  Thankfully,
he has not lost his taste for milk, which just may be the only thing keeping him alive.

We are trying to enjoy a bit of a break from treatment for about two weeks, at which point (June 22),
we will go back into City of Hope to begin Stem Cell Transplant (SCT).  We say "trying," because
Andrew has to complete a battery of tests prior to being approved for SCT, which has meant that
we are at the hospital almost every day this week.  The purpose of these tests is to confirm that
Andrew has "No Evidence of Disease," or "NED," prior to the transplant procedure.  For
neuroblastoma, they do not really use terms like "cured" or "remission," they simply state that they
cannot find it for now.  It is important that he has achieved NED status prior to transplant, because
it gives him better long-term odds with this disease.  The tests are also used to ascertain the impact,
if any, that Induction Chemotherapy has had on his heart, kidney, liver, and hearing function.

Transplant will be a four to six week hospital stay for us, where Andrew will effectively be in isolation.
The summary of transplant is that he receives 8 days of intense chemotherapy, which will wipe out
his bone marrow, at which point he will be re-infused with his own stem cells (previously harvested
and stored) to "rescue" his marrow and restart it.  As our doctor described:  It is like hitting the reset
button on his immune system.  As another parent described:  It is the single hardest thing I've ever
had to do in my life.  Each child is different in terms of how long it takes for his or her bone marrow
to recover, so that is why we  don't know the exact length of our stay.  By the way, we need to make
a plea for blood and platelet donations in Andrew's name at City of Hope.  He will require many
transfusions over the course of his stay (according to the transplant doctor, some kids receive daily
transfusions), so if you are able to give, please do.  With that said, he will not start needing blood until
approximately June 30, so don't rush to go now.  It will be better to give closer to that date.

The rationale behind transplant--and really most of the treatment for Neuroblastoma for that
matter--is that they are trying to "mop up" any stray cancer cells that might have been missed by
Induction Chemotherapy and by surgery.  Neuroblastoma is notorious both for being stubborn and
for hiding well.  After transplant, Andrew will receive radiation treatment to his tumor sight and
then go on a regimen of cis retinoic acid for six to twelve months.  Again, the idea behind both is
clean up of any trace cancer cells that might be lurking.

Somewhere in the radiation period, we have some decisions to make in terms of whether we pursue
additional treatments above and beyond the standard protocol.  For example, there are potentially
promising antibody treatments that are available in New York or there are other trials we might
investigate at St. Jude's or at Texas Children's.  Again, the fear with neuroblastoma is that it is
stubborn and likes to relapse.  Fifty percent of children will relapse and those who do aren’t given
much hope of long-term survival.  There is a line of thinking that says throw everything you can at
this disease, yet there is another that says don't use all the weapons at your disposal upfront,
because you may wish you had them later.  This is the line we will be trying to walk down and the
balance we will be trying to strike as transplant unfolds and we move along in Andrew's treatment.
As another doctor told us:  At some point, we have to stop telling Andrew that he is a sick kid and
just let him be a kid.

In that spirit, what is immediately in front of us is a trip to San Diego and visits to Legoland, Sea World
and the Wild Animal Park.  This will be next week and we hope to enjoy a fun family vacation and
forget about cancer for just a few days.  We were advised by another family that the stay for
transplant is loooooooong, so cram in as many good, recent memories as you can beforehand so that
you have fun stories to talk about to help pass the time.  Good advice; we'll take it.

Before we sign off (and are not heard from again for months), it is important to us, especially in
light of the stay for transplant, to talk about Lucia, who has been an incredible and inspirational
daughter and big sister--somehow managing to take all of this in stride--but who is a five-year-old
nonetheless and is part of the collateral damage of this disease.  She has been gracious and kind and
funny and understanding and (largely) "low maintenance,” but her world has been turned upside
down just like ours, so we ask that you please keep her in mind just as you do Andrew.  When you
see her, please ask how she is doing.  Please let her know that you are interested in her and what
she is up to, not just the latest on her brother.  We would be so grateful for that.

As for us, we are holding on.  Some days are fairly miserable (yesterday) and some days are fine
(we would have to think back a bit to pin one down), but we are managing and getting by.  We can
safely say that we do not know what we would do without the unbelievable compassion and support
(and food) we have received from everyone.  It is truly humbling.  We ask that you continue to keep
up the prayers and positive thoughts for Andrew, Lucia and us.  Clearly, they are working and we
are drawing on them.  In particular, hope for good results (NED) from Andrew's tests and scans this
week, wish for appetite and weight gain, and pray for smooth and quick transplant.

Thank you.  Thank you.  Thank you.

Paul & Cynthia

By the way, since we look for silver-linings wherever we can find them now, the good news so far is that
Andrew has a pretty impressive scar that will be quite useful in getting the ladies when he is older.
Much older.