Please ...

Forgive us for....

1) Not being able to respond to all the emails asking
if we have thought about: St. Jude's, Mayo Clinic, City
of Hope, Oakland Children's Hospital, etc...

When we started treatment Rosie and I decided to stick
with one Hospital. Second guessing yourself is a cruel
and vicious cycle to get into. All the major Hospital's
follow the guidlines provided by the Children's Oncology
Group (COG). So, treatement at one Hospital will basically
be the same regardless of where you seek treatment. The
major differnece between Hospitals is the staff. Early on
we realized Stanford staff was the cream of the crop. In Ben's
case ( based on what I gleened from his BLOG ) a radically
different approach was found at Columbia not offered at
LPCH.

Ben presented as Stage 1; no Metastases beyond the primary
tumor. Paige was diagnosed as Stage 4. This is as bad as
it gets. She had 4 Metastases in addition to the Cancer
having spread to the Bone Marrow. Resection was not an
option because of the proximity of the tumor with her rectum.
Surgery would have meant a Cholostomy, not very appealing
for a 4yr old girl. Surgery did not increase her possiblity
of living.

Children's Oncology Group

2) If we don't seem to be interested when asked, "have you thought of trying:
shark cartialage, vitamin c, garlic, echinacea, ginseng, Cancer Clinics
in Mexico, coffee enemas, aloe vera, Chelation Therapy, etc...

Try getting a 6yr old to take a pill let alone something green, slimy,
it doesn't taste like a blue kool aid jammer, it doesn't look like a
chicken tender, it's not peanut butter and jelly. Paige is so strong
willed you cannot get her to do something she doesn't want to do. Every
day is a new adventure in, "Negotiating Skills 101, a Case study with a 6yr
old".

3) having no response when you ask "is she getting better",
or "aren't you excited Paige is going to be in school fulltime in September" ....