Friends,
I have been asked by several for a more detailed run-down of all that is
going on with Asa (and us). This is not private info, nor a complete
list
this should have gone out to, so share as you like. I'm sure there will
be
some better mode of sharing in future, but for right now* If any of
this is
stuff you know, skip that part and skim on. I've gotten all sorts of
good
questions from many of you and keep asking them. Many of them are
alerting
us to stuff we should be asking.
On Tuesday, Feb 11, I took Asa in to the pedi. Pedi office called at
noon
that day and switched the appointment to my pedi's partner. I was very
frustrated by that, but it was part of God's plan. We had been feeling
that
Asa's tummy was very hard and tight and were a bit concerned - didn't
seem
quite normal to us. Dr. Shoemaker, Dr. Singh's partner, felt the same
and
sent me stat over to Tomball hospital for an ultrasound and they found a
mass in Asa's belly. She was a total joy to work with and pointed out
to
me from the get-go that God knew this before, knew what was going on
now,
and had the future in His hands. What a doc!
Dr. Shoemaker immediately referred us over to Texas Children's (TCH) and
began working on a game plan to get us in to the right specialist the
next
day. We went home to have poor Allen's 15th bday dinner with kids and
we
got a phone call from Tony's neurologist (neck doc) down at Methodist
Hospital downtown. He had a cancellation for Wednesday at noon and
wanted
Tony to come in. The neuro's assistant who made the appointment advised
us
to speak to him about Asa. No coincidence.
Wednesday the pedi was still working on a game plan and we drove down to
neck doctor prepared to go from there to TCH. While in the office
meeting
with the neurologist about Tony's neck, the pedi called and gave us
directions to go down to the ER for fast track. They were expecting us.
Dr. Baskin (neuro) stopped his neck discussion, felt Asa's tummy and
stopped all and started making phone calls for us and hooked us up with
the
top surgeon at TCH. His assistant used to work as a nurse at TCH and
knew
the system. We arrived after a block's walk to the ER with the surgeon's
resident waiting on us, bypassing the nightmarish ER system wait here.
That's a big deal.
We spent a while in the back rooms of the ER before being admitted and
waiting on a ultrasound to be done and not being allowed to feed Asa the
whole time because they didn't know if he needed immediate surgery.
Ultrasound was done, along with bloodwork, and we were admitted.
Thursday was a nightmare of meeting with random docs with weird names,
random residents (teaching hospital!), not feeding baby again much of
the
day, waiting on an MRI that happened finally at 5:30-6ish. We were
supposed
to get results late that night, but the left hand didn't communicate
with
the right and that didn't happen. Their suspicion at the time was a
number
of things from very benign issues to types of liver cancer. The
bloodwork
indicated a somewhat elevated AFP (alpha feta protein) level, which is
high
in babes anyhow, but might be a marker for a type of liver cancer. Not
necessarily. Both surgeon and oncology were all over the place with this
and
seemed to be discussing amongst themselves a lot, but not that much with
us.
Asa woke up from his MRI sedation a total starving bear and ate and
puked
until they gave him Zofran and he went to sleep. It was an interesting
and
long day.
Oncologist sat down with us yesterday, Friday the 14th and that is what
our
current status update is based upon. Asa woke up a bit improved after
all
his MRI recovery, so at least he was pseudo-pleasant that day. The
oncologist told us that she is about 95% sure this is a hepatoblastoma,
a
liver cancer that hits children. It's very treatable. We are really
not
given staging in this like adults (at least what said thus far) because
evidently this one is discovered at about the same stage in most kids -
when
there's a lump in the tummy. It is attached to the left lobe of liver
only.
It is very large, though that doesn't seem to concern them since it
seems to
be located only there. There is an unbelievably tiny unknown spot on
the
lungs that could be related and change diagnosis a bit, but that
investigating that further on Tuesday to make sure there are no more
strange
things on the CT scan. That's all that can be found elsewhere and they
don't even know if it's anything at this point and if it is, it appears
minimal.
Though we don't know all the details, after meeting with the chemo
oncology
guys that will be our long term docs, the upcoming scenario is as
follows.
There will be 2-3 rounds of chemo with 4-6 weeks between. Chemo will
always
be done inpatient at TCH and take about 3 days. The expectation is that
this reduce the tumor very significantly and allow them to remove it
without
causing a lot of trauma to Asa's little body. Then this will be
followed
with several rounds of chemo again. Each week I will have to take Asa
into
clinic here at TCH twice for check up. We've been told to expect 6
months
plus.
Good things. This is treatable. Childhood cancers are much easier to
treat
than adult cancers. We are in one of the best places regardless of this
scenario being better or worse - they handle this type of cancer several
times a year and there are very few of these cases in the US each year.
This was identified and caught. We don't have any understanding of how
long
it has been there, nor do docs. And, this cancer has an easy marker as
to
how it is responding to chemo - you can measure the AFP (alpha feta
protein)
in the blood.
Bad things. It is cancer. This is a pretty long haul or it seems that
way
as we look into the dailiness of it. Kids are situated, but there will
be a
lot of juggling to do. Tony still needs neck surgery at some point in
near
future. My brother-in-law is also battling cancer.
We would appreciate prayers. As a friend pointed out, Asa's name means
"physician or healer." His middle name is Josiah - Yahweh has healed.
We
are praying for healing and trusting God to care for Asa and give us
wisdom
as to how to deal with him and the docs and that He will be faithful to
work
this out to His glory. I think we are still in an auto-pilot fog at
this
point, handling details non-stop, trying to understand everything with
harder days ahead, days where our emotions will catch up with reality a
bit
more.
This week entails testing on Monday, a biopsy Tuesday morning, chemo
Wednesday thru Friday. Sometime thereafter supposedly we will be
released
home to try to stay well with a house full of other children. Whee!
Thank you for your love and your friendship!,
Mimi and Tony
I have been asked by several for a more detailed run-down of all that is
going on with Asa (and us). This is not private info, nor a complete
list
this should have gone out to, so share as you like. I'm sure there will
be
some better mode of sharing in future, but for right now* If any of
this is
stuff you know, skip that part and skim on. I've gotten all sorts of
good
questions from many of you and keep asking them. Many of them are
alerting
us to stuff we should be asking.
On Tuesday, Feb 11, I took Asa in to the pedi. Pedi office called at
noon
that day and switched the appointment to my pedi's partner. I was very
frustrated by that, but it was part of God's plan. We had been feeling
that
Asa's tummy was very hard and tight and were a bit concerned - didn't
seem
quite normal to us. Dr. Shoemaker, Dr. Singh's partner, felt the same
and
sent me stat over to Tomball hospital for an ultrasound and they found a
mass in Asa's belly. She was a total joy to work with and pointed out
to
me from the get-go that God knew this before, knew what was going on
now,
and had the future in His hands. What a doc!
Dr. Shoemaker immediately referred us over to Texas Children's (TCH) and
began working on a game plan to get us in to the right specialist the
next
day. We went home to have poor Allen's 15th bday dinner with kids and
we
got a phone call from Tony's neurologist (neck doc) down at Methodist
Hospital downtown. He had a cancellation for Wednesday at noon and
wanted
Tony to come in. The neuro's assistant who made the appointment advised
us
to speak to him about Asa. No coincidence.
Wednesday the pedi was still working on a game plan and we drove down to
neck doctor prepared to go from there to TCH. While in the office
meeting
with the neurologist about Tony's neck, the pedi called and gave us
directions to go down to the ER for fast track. They were expecting us.
Dr. Baskin (neuro) stopped his neck discussion, felt Asa's tummy and
stopped all and started making phone calls for us and hooked us up with
the
top surgeon at TCH. His assistant used to work as a nurse at TCH and
knew
the system. We arrived after a block's walk to the ER with the surgeon's
resident waiting on us, bypassing the nightmarish ER system wait here.
That's a big deal.
We spent a while in the back rooms of the ER before being admitted and
waiting on a ultrasound to be done and not being allowed to feed Asa the
whole time because they didn't know if he needed immediate surgery.
Ultrasound was done, along with bloodwork, and we were admitted.
Thursday was a nightmare of meeting with random docs with weird names,
random residents (teaching hospital!), not feeding baby again much of
the
day, waiting on an MRI that happened finally at 5:30-6ish. We were
supposed
to get results late that night, but the left hand didn't communicate
with
the right and that didn't happen. Their suspicion at the time was a
number
of things from very benign issues to types of liver cancer. The
bloodwork
indicated a somewhat elevated AFP (alpha feta protein) level, which is
high
in babes anyhow, but might be a marker for a type of liver cancer. Not
necessarily. Both surgeon and oncology were all over the place with this
and
seemed to be discussing amongst themselves a lot, but not that much with
us.
Asa woke up from his MRI sedation a total starving bear and ate and
puked
until they gave him Zofran and he went to sleep. It was an interesting
and
long day.
Oncologist sat down with us yesterday, Friday the 14th and that is what
our
current status update is based upon. Asa woke up a bit improved after
all
his MRI recovery, so at least he was pseudo-pleasant that day. The
oncologist told us that she is about 95% sure this is a hepatoblastoma,
a
liver cancer that hits children. It's very treatable. We are really
not
given staging in this like adults (at least what said thus far) because
evidently this one is discovered at about the same stage in most kids -
when
there's a lump in the tummy. It is attached to the left lobe of liver
only.
It is very large, though that doesn't seem to concern them since it
seems to
be located only there. There is an unbelievably tiny unknown spot on
the
lungs that could be related and change diagnosis a bit, but that
investigating that further on Tuesday to make sure there are no more
strange
things on the CT scan. That's all that can be found elsewhere and they
don't even know if it's anything at this point and if it is, it appears
minimal.
Though we don't know all the details, after meeting with the chemo
oncology
guys that will be our long term docs, the upcoming scenario is as
follows.
There will be 2-3 rounds of chemo with 4-6 weeks between. Chemo will
always
be done inpatient at TCH and take about 3 days. The expectation is that
this reduce the tumor very significantly and allow them to remove it
without
causing a lot of trauma to Asa's little body. Then this will be
followed
with several rounds of chemo again. Each week I will have to take Asa
into
clinic here at TCH twice for check up. We've been told to expect 6
months
plus.
Good things. This is treatable. Childhood cancers are much easier to
treat
than adult cancers. We are in one of the best places regardless of this
scenario being better or worse - they handle this type of cancer several
times a year and there are very few of these cases in the US each year.
This was identified and caught. We don't have any understanding of how
long
it has been there, nor do docs. And, this cancer has an easy marker as
to
how it is responding to chemo - you can measure the AFP (alpha feta
protein)
in the blood.
Bad things. It is cancer. This is a pretty long haul or it seems that
way
as we look into the dailiness of it. Kids are situated, but there will
be a
lot of juggling to do. Tony still needs neck surgery at some point in
near
future. My brother-in-law is also battling cancer.
We would appreciate prayers. As a friend pointed out, Asa's name means
"physician or healer." His middle name is Josiah - Yahweh has healed.
We
are praying for healing and trusting God to care for Asa and give us
wisdom
as to how to deal with him and the docs and that He will be faithful to
work
this out to His glory. I think we are still in an auto-pilot fog at
this
point, handling details non-stop, trying to understand everything with
harder days ahead, days where our emotions will catch up with reality a
bit
more.
This week entails testing on Monday, a biopsy Tuesday morning, chemo
Wednesday thru Friday. Sometime thereafter supposedly we will be
released
home to try to stay well with a house full of other children. Whee!
Thank you for your love and your friendship!,
Mimi and Tony
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