Thu,
24 Apr 2003
Bone
Marrow
Morning
everybody. I'm not quite sure how to begin this email
this time. Probably with a big sigh. Wanted to send
this email last night but was a little emotional and
overwhelmed. Had a four to five hour meeting with
our Bone Marrow Transplant Team at LDS Hospital yesterday
afternoon. Discussed Jade's diagnosis, procedure and
survivability rates.
First of all, since Jade's cancer is so rare there's
really no adult treatment procotol that exists for
it. (DRs are adapting what minimal pediatric protocols
exist.) We were given three options of how to proceed.
Option 1: Finish chemotherapy and be done. Not really
a strong option since this type of sarcoma has never
been completely responsive to chemo. No one has ever
lived using this option only and while there's a first
for everything, it seems a little risky.
Option 2: Finish chemo and have an autologous (Jade's)
bone marrow transplant. After another three to six
rounds of chemo, having his Hickman catheter (two
ports coming off the main line) replaced with an Apheresis
catheter (three ports coming off the main line; the
extra one being able to hand the stem cell transplant)
and harvesting his stem cells/bone marrow he would
be hospitalized for the autologous transplant. While
in the hospital, he'd be given a week's worth of even
more intensive lethal/toxic chemo and then given his
stem cells back.
Option 3: Finish chemo and have an auto-allo transplant.
Autologous being Jade's stem cells and Allogeneic
being Jared (donor) stem cells. Everything described
above in option two would be done with the addition
of immune supression drugs and approximately two weeks
or so following Jade's stem cells being given back
they would give Jared's back. They stated Jade's bone
marrow doesn't know how to 100% fight off the cancer.
It might be able to do 99.997% of it, but with as
aggressive as this type of cancer is that slim chance
is more than enough for it to come back or really
never go completely away. The hope is that once Jade
is given some of his stem cells back he will start
to "live" again after the intense chemo
and immune suppression and then Jared is given hoping
that it will battle Jade's and "win" out.
In the end, Jade's bone marrow will never exist again
and will be forever replaced with Jared. There is
a risk for Jade getting graft versus host disease
which is basically his body rejecting Jared's bone
marrow (as is true with any other transplant). Some
symptoms of this our Bone Marrow Doc is willing to
tolerate but it could become severe enough that is
is a problem. They are modeling this treatment plan
after what has had some success in other types of
cancer which mimic Jade's desmoplastic small round
cell sarcoma. In those patients, one third do fine
and go into remission, another third get too serious
of comlications of graft versus host disease and die,
the other third is a mix of 50% getting mild graft
versus host disease and pulling through and the other
50% getting it severe enough that they die. So while
it's divided into thirds it actually ends up becoming
50-50 with the final statistics. If he gets graft
versus host disease bad enough they are able to kill
off Jared's bone marrow in Jade and let us just have
Jade's take over and ride out our chances.
So, how's that for a Reader's Digest version of a
four to five hour discussion? Now you know why I started
this with a sigh. In addition to all that fun, Jade
will have to have someone with him 24 at the prep
and follow-up of the transplant. During the bone marrow
transplant he'll be spending at least about 20 days
in the hospital if all goes well.
Our bone marrow doctor (Finn Peterson) is associated
and in a concortium (sp?) with other hospitals/universities
across the country. The one study he showed us done
in Italy with chemo only (where results were "dismal"),
Jade had already read on the internet. This is really
"cutting edge" or "experimental"
stuff. The hope is that since the third treatment
has been successful in other type of cancer patients
(where the other two haven't worked for Jade's cancer)
it could work for Jade.
Jade and my philosophy has been as aggressive as possible
in treating this since it is extremely fast growing
and aggressive. We do have a couple weeks to decide.
We are going to continue to talk pro/con with each
option although we are strongly leaning to Option
#3. I won't lie; it's very daunting and overwhelming
to look at what comes after we finish the next couple
months of chemo.
There are still many things to be grateful for. How
lucky are we to have Jared be a match and live right
here?! (By the way, Jared will have one IV in an arm
to draw out his blood, run it through a centrafuse
machine and send all of it back minus the stem cells
through a second IV in his other arm. He gets to read
a book or watch a movie while they get it. Quite unintrusive
which is great!)
Ok, I need to be done since this is already ridiculously
long. But that gets the bulk of it. Thanks for continued
faith, prayers, support and encouragement. Jade is
feeling good all in all. Hair will probably finish
coming out today or tmrw latest. So there's a quick
update on him. Thanks for everything! Take care!
Love...........Tanya and co.
