We just got back from Brad's check up, mostly waiting to
hear about his bone marrow biopsy he had last week. Sadly, I
have to report that the CLL is growing. It is now up to 40% in
his marrow.
This
is common to see CLL go up and down for awhile. The CLL was
knocked out initially when he was in the hospital before the
transplant and he received chemo and radiation. When we heard
there was only 5% CLL in his marrow a month after transplant we were
thrilled,but have to remember that a lot of that number comes from
the chemo and radiation knocking it out for awhile. If you
think about normal chemo, Brad would normally be getting 5 more
months of chemo to really kill it. Instead we brought in a
donor in hopes of killing it altogether and transforming Brad's
cancer cells to Aaron's healthy cells. The plan was for Aaron's
cells to get in there and take charge, which can still happen.
She said that it is now a race between the graft (Aaron's cells) and
the cancer cells. Dr Muffly wants to give it more time and see
if Aaron's cells will kick in! In the meantime, she has
instructed Brad to drop down on his medication called Tacrolimus
(TAC) which prevents graft vs host (GVH) disease. We will do
this so that the graft has a better chance of a fight. However,
Brad has a better chance of GVH. She said we have several
options to go to should the cancer continue to grow. Ibrutinib
is a drug she may start him on which is a drug that has recently been
approved and is doing marvelous wonders in putting patients into
remission. Ibrutinib is a 50/50 chance and could help clear out
the CLL and then let Aaron's cells come in and clean up! They
froze millions of Aaron's cells so we may have to pull some of those
out again! Needless to say, our drive home was very quiet as we
tried to process all of this garbage. It is emotional and wears
you out. I cannot imagine what Brad is processing in his head.
The prospect of having to do more "procedures" is
exhausting. However, Muffly did ask us to PLEASE PLEASE PLEASE
do not feel hopeless and that there is a lot we need to see in the
next 3 weeks (another bone marrow biopsy to see if the cancer cells
are still growing, and a CT Scan to check for lymph nodes) and a lot
of options should we have to move forward. We will get Brad another priesthood blessing soon and hope that we can gather the family to do
that.
Heavenly Father
will take care of Brad and all will be OK. A long haul still
ahead.
