someone asked ...

But she looks so good. The pictures in the blog...she
looks happy and healthy, what is the story behind 1-3
months.

March 03 to Feb 04 during the first year Paigee received
Chemoa and Radiation. August 04 relapse to Brain. No chance
for cure but a treatment used for Wilhm's Tumor has
had good success for keeping Rhabdo under control.
Let's do that, 1 year. Imagine knowing for 1 solid
year what is ahead of you. Try keeping a happy face
so your baby continues to live innocently believing
she is going to be cured, that her hair will grow
back, that she will be in Brownies, she will play
in the AYSO Soccer league...knowing all along!
Try that when you keep getting asked, "is she getting
better ?"

Although she looks good, the tumor on her head/brain
is growing rather quickly now that it has been a little
over 1 month since her last Chemo treatment.

Why not continuing treatment ? First the Cancer becomes
resistant to the Chemo, and second, the body becomes weak
and cannot recover from the Chemo sessions. Remember
Fever and Neutropenia ( F&N ). F&N would last longer and
infections would become more serious risks; pneumonia and
God only knows what else.

The Children's Oncology Group ( COG ) is the Board that
Stanford belongs to that determines what Protocols are used
in the treatment of childhood Cancer. From August 04 to July 05
we have been on a catch all that Dr. M knew would give us
this extra year. Why not radiate the head/brain ? We could
but since there is a tumor there, it is very likely that the
Rhabdo cells are now in other parts of the body. Radiation
would certainly shrink the brain tumor but where next.

Another data point. Two other girls that were Stage 3 Rhabdo
didn't respond as well as Paigee has. Both girls died in
less time than Paigee. What happened is that ultimately the
Rhabdo spread to many other locations, eventually to the brain
where it eventually took their lives. So, radiate and risk
more growth in other places only to die from a tumor to the
brain. But that's where we are right now. One of the girls
last months before she passed she had to witness the cancer as
it ate away the skin on her lower trunk. I'm not sure if this
was painful but can you imagine a 7 yr old living through that ?
I can't imagine a worse way to end up living your last couple
of months.

( taking a break, crying makes it hard to continue )

How would you decide. Someone has expressed, "why have you
let this drag on so long ?" Hmm, that was a parent that
said that. Easy to play weekend quarterback here, but what
would you do ? Could your marriage have survived; many
marriages end in divorce from situation less difficult
than this. My Therapist is constantly amazed at how
Rosie and I are surving this !

So, what's next ? We have yet another decision to make...
Phase 1 studies. They are solely for determining dosage
levels of new drugs or new combinations of drugs. We know
that Paige will be very sick and will lose her hair. Paige
talks non stop about when her hair grows back. Before she
admitted to being a Tom Boy it was going to grow to her
bottom, now it's to her shoulders and she jokes about dying
it a crazy color.

There is no hope for cure from Phase 1 studies. No hope !
Only more pain and certainly the realization that there is
not going to be a cure. Would you risk letting Paige finding
out she is not going to be cured, what about when she realizes
she is going to die ?

( taking a break to cry )

Now can you see why I am so distraught over DQ. They promised
spectacular. I'm trying to pack as much spectacular as possible
into this time. It made me feel like "I" let Paigee down. How
would you spend the remainder of your life feeling like you had
let such a precious little girl down in her last moments !