What a whirlwind trip again! It’s been incredibly
helpful to have Kyle along to do driving while I sit in the backseat, entertain
Henley, catch up on sleep… and write this update!
SO here are the updates! There’s a lot of
them and I will try to keep to the point and not get too long winded.
First, red cells are hanging in there. We are
7 weeks’ post transfusion and they are sitting right at the low end of normal,
trending down slowly. We are really hoping to make it another 3 weeks or so
before needing her 4th transfusion. Bloodwork will continue to be
monitored weekly and we’ll also watch at home for any symptoms that indicate she’s
dropped.
Second, neutrophils have dropped to
dangerously low levels again. She has likely just outgrown her medication dose –
so it was increased and we will recheck Thursday morning to see if there’s been
a good response.
Third, we have chosen to do transplant in MN
instead of Boston. This has been a difficult decision for us, but we have met
with both teams, evaluated everything and feel comfortable with our choice.
Fourth, Henley gets to start eating solid
foods! Most infants would start with rice cereal or vegetable and fruit purees –
but not our special girl, she’s gonna start with steak! Lol!!! We met with her
dietician today and will go forward with her recommendation. To optimize her nutrition,
she will get small amounts of pureed meat with olive oil or avocado oil during
the day, along with her breastfeeds.
Fifth (gosh lots to tell huh!), Henley will
be undergoing another bone marrow biopsy, likely in December around Christmas.
It’s important to watch her marrow closely and evaluate whether there are any
changes that would indicate we need to proceed more quickly to transplant. That
biopsy will be done at the University of MN.
Finally, a very encouraging piece of news – a
perfectly matched donor has been identified for Henley – BUT—and that word is
very important. BUT, we don’t know for certain that he would be available or
would go through with donation. Henley’s doctor wants his actual marrow, this
means he would be under anesthesia while his marrow is extracted from his bone.
Choosing and securing a donor is a
complicated process, but I’ll try to summarize what was explained to us today.
What we know is that a 22-year-old male has been chosen by Henley’s doctor. He
is a perfect match, right down to blood type. We know that he was contacted and
agreed to go in for additional testing which helped further show he is a match
for Henley. Here’s where it becomes complicated…. We don’t have a transplant
date yet and are trying to delay so that Henley can be as big and strong as
possible when she enters transplant. Since we don’t have a transplant date, we
can’t HOLD or SECURE this particular donor. We can’t even ask him if he would
be available because we don’t know if we will need him next month, three months
from now or six months from now. Two months ago when we met with transplant things
looked different than they do today, transplant seemed likely this winter. We
still know transplant is in the very near future, meaning it’s still something
we will do within months, not years.
NOW we want to ask you to continue to help
us. Our mission to grow the registry has not changed. Our request for people swab
and join the registry has not changed with the news about a promising match for
Henley. It won’t ever change. Not even after transplant because there will
always be a special someone, like Henley, that is out there waiting for their
hero. Our little friend Roman (a 3-year-old with SDS in Texas) is one of those
special people. He and his family have spent his whole life looking for a
match. So please don’t stop sharing information about Be The Match and bone
marrow donation. It’s a wonderful gift of hope and life that YOU might be
called to give someday!
** I will ad some photos once we get home and on wifi instead of the data from my phone ;)
