November 8, 2002
As you know we had planned to treat Alex with CEP-701 (FLT3 inhibitor), but
despite the efforts of Dr. Don Small at Johns Hopkins,
turned down our request for a compassionate exemption. Alex will not receive
CEP-701 because Cephalon is uncomfortable with giving the drug to a 4 1/2
year old. Cephalon has also postponed their pediatric CEP-701 trials
Our second choice was to enroll Alex in the pediatric R115777 studies, but
we found out today that the study has been suspended by the NIH because they
couldn't find viable candidates. The irony is that Alex is definitely a
viable candidate and she can't get into the study. So far Alex is doing
well, although her platelets have dropped to 103 and her peripheral blast
count is up to 36%.
As you can imagine we're very disheartened at the moment. We are now left
with only one option. Use Mylotarg a fourth time, either alone or in concert
with high dose ARAC (conventional chemo). If we use Mylotarg by itself, we
could then follow that up with maintenance doses of Mylotarg. Either way
we're looking at long term neutropenia (no immune system) and an increased
risk of infection. We could succeed in keeping the Leukemia suppressed and
still end up losing her to an infection.
If any of you know a way to get R115777 or FLT3 inhibitors outside of a
study, please email me ASAP. We're willing to go overseas to get access to
any of these drugs. Our insurance company will approve a second transplant
after the six month waiting period is over in January. We just need to find
a way to keep her alive until then.
Thanks again to everyone for all your support. Take care.
November 7, 2002
want to thank all of you who are trying to find us a flight to Baltimore. I
really appreciate all of your efforts. For those of you who didn't receive
my earlier message, we need to fly from Seattle to Baltimore early next week
and a commercial flight is not a safe option.
A number of you have asked for the name of the FLT3 inhibitor drug and the
drug company that makes it. The drug is CEP-701 and the company is Cephalon.
Dr. Don Small from Johns Hopkins is meeting with Cephalon tomorrow to
hopefully convince them that Alex is a good candidate for the drug. We
should know very soon if we're going to be approved.
If we're approved for the drug we'll be in good shape. We'll start with
CEP-701 and if it fails we'll move on to R115777 (another targeted chemo
which is not a FLT3 inhibitor). The short term goal is to keep her in
remission until January when transplant is an option. The long term goal of
course is to keep her in a long term remission!
If we can't get approval for CEP-701 we'll have to try R115777 immediately.
If that doesn't work and it's not yet January, we will have to make a
decision whether or not to give Mylotarg a fourth time before going to
Thanks again to everyone for all your support. Take care.
November 5, 2002
The other shoe has dropped yet again. A blood test today confirmed that Alex
has 9% leukemia blasts in her blood, which means she has relapsed for a
sixth time. She'll have a bone marrow aspirate tomorrow, and bone marrow
samples will be sent to Johns Hopkins to check for the FLT3 mutation. As
long as the FLT3 mutation is still present she is a candidate for the FLT3
inhibitors, but we will still need to convince the drug company to make an
exception for her age. If we can't convince them to make an exception, we
have very few options left. Let's hope they have hearts.
After the hospital we're
going to take Alex to see Seussical courtesy of
Starlight Children's Foundation, so at least we'll have some fun
tomorrow. I'll try to post more info and some photos later this week.
October 25, 2002
Just when you think you've got this disease figured out, it throws you a
curveball. We decided to have another blood test taken today in case Alex's
counts had fallen into critical range. The results that came back were mind
boggling. Her platelets were down a little more (but still within normal
range), but her ANC had jumped from 765 to over 1300 in three days. So the
bone marrow aspirate is off and it appears that the sixth relapse hasn't
begun yet. Instead it appears that Alex picked up a virus that is now
working its way out of her system. That would explain the low ANC, as well
as the slight drop in platelets.
As you can imagine we're
relieved, but realistic. We know there is still a 99.9% chance that she
will relapse in the next few months, so you can only get so excited. At
least it looks like she'll be able to go out trick & treating! <grin>
Hope everything is going
great. Take care.
October 22, 2002
Just a quick update. Alex's ANC has fallen to 765 and while her platelets
and WBC (white blood count) have remained steady, it's pretty obvious that
her sixth relapse is imminent or has already begun. Alex will have a bone
marrow aspirate next Monday to confirm the relapse and then we have to hope
and pray that we can get an exemption to one of the FLT3 trials. We still do
not have approval for a second transplant, so there are very few other
options. We could try Mylotarg a fourth time, but the remission time has
been decreasing with each dose (15 months to 5 months to 2 1/2 months). The
only other option is R115777, which is another drug currently in trials, but
is not a FLT3 inhibitor.
I'll post more info as I have it. Take care.
Thursday, October 17,
a boy!!! For obvious reasons it only took the doctor about 30 seconds to
determine that we're having a son and not a daughter. Needless to say
Andrea is still in shock, as she was totally convinced we were having
another girl. She just walks around in a daze, muttering "it's a boy,
it's a boy..." <grin> She's also taken to calling him "Tripod", for
reasons that I'll leave unspoken!
Seriously we're both very happy to have a son on the way and Alex is
looking forward to meeting her baby brother. So far everything looks
great and he's measuring about a week ahead of schedule. I would post a
photo here, but we were both so in shock that we forgot to ask the
doctor for one. We'll be sure to get one at the next ultrasound in three
still got a few months left to pick a name, but I'm already tired of
calling him baby boy. So far the leading candidates are Jacob,
Ethan, Joshua & Samuel. I think we watch way too much West Wing, as two
of those names are names of characters on the show. At least we've ruled
Alex had a bone marrow aspirate and spinal tap last week and she
continues to be in remission. Her platelets and ANC (immune system) are
slowly returning to normal, although not nearly as fast as they have in
past remissions. It's a little scary to be heading into flu season with
a weakened immune system, but so far she's doing okay. Barring a relapse
she'll be receiving a flu shot in the next few weeks, so hopefully we
can avoid her getting sick.
more medical news, Alex lost her first tooth! She walked up to Andrea
the other night and told her that her tooth was loose. Of course Andrea
thought she was kidding until Alex started wiggling her tooth in front
of her. It took less than a day for the tooth to fall, or should I say
be pulled out completely. I was teasing Alex that I could pull her tooth
out for her if she wanted me to and of course she said no. She then
stuck her hand in her mouth and pulled out the tooth on her own!
Needless to say I was pretty shocked that she could do this, but then
again she's proven that she is a tough little girl. She spent the next
hour or so dancing around, singing "I lost my tooth" until we finally
convinced her she had to go to sleep so the tooth fairy could pay her a
visit. Unfortunately the tooth fairy (or fairies) didn't have any
singles in their wallets/purses, so payment was a stack of quarters
which were somehow placed under her pillow without waking her up! <grin>
you probably guessed from the photos on this update, we went apple and
pumpkin picking last weekend with Alex and some friends. We had a
fantastic time at Terry's Berries in Tacoma where you can not only pick
your own apples and pumpkins, but also press your own apple cider! I
grew up back east and went apple picking just about every fall, but I
had never pressed my own cider. Let me tell you there is nothing like
fresh apple cider. Now if I could just convince the apple farms in
Washington State to start carrying Apple Cider donuts. The highlight of
the day for Alex was when she suckered me into pulling her (and several
large pumpkins) around in a cart! Between the cart, lugging around
buckets of apples and the cider pressing I was pretty sore the next day,
but it was well worth it.
Thanks again to all of you
for almost 4 years years of love, support and prayers. Special thanks to
the folks at
CouponMaker for their support of
Alex's Coupons, including
their offer to increase our commission by 50%! Special thanks also to
Pauline & Terry Ryan for sending us a half dozen of Apple Cider donuts
via FedEx. Ten seconds in the microwave and it was like being home for
Todd, Andrea and Alex
Mail to: Frontier Bank
c/o Alexandra Elaine Martini
P.O. Box 527
Lake Stevens, WA 98258