It’s been a week since we were in Birmingham for the long stretch of tests
and chemo. I have been waiting to hear results from these tests before I sent
out an update.
Overall, everything looks to be stable. The PET and CT scans showed the
cancer to be stable with a small amount of improvement. YAY! PRAISE GOD!
The tumor located behind the belly button showed the most improvement both
on PET imaging for metabolic activity and on CT for reduction in size. The mass
is still “hot” or PET positive, but the “heat” generated by the cancer cells was
noted to be less. The phrase in the report described it as being “not as
bright”. That is definitely some good news!
The larger pelvic mass did not show as much improvement in size. It is
considered to be stable at this point. It was also still PET positive and
without much change in the “heat” reading. Stable is good and we will take it!
PRAISE GOD!
The other big praise is there were NO indications of ANY NEW DISEASE!
Woo-hoo!!! Another huge praise!!! No new cancers!!
I don’t have the final impressions of the pill camera endoscopy, but the CT
scans showed that there are polyps present in the small intestine. It did not
show anything large that would cause a blockage. ANOTHER PRAISE!
It has been a year since Nick has had these GI tests run, so I am very
happy that nothing large was found. This is the first time, with this length of
time between tests, that nothing large has been found. PRAISE GOD!
I don’t anticipate the final results of the pill camera to tell me anything
conflicting. In the past, these two tests have been in sync.
The only thing that the CT scans showed that did cause me some concern is
called a calcified granuloma in the right lobe of Nick’s liver. From what I
understand from the research I’ve done, this isn’t that uncommon. A granuloma is
a benign tumor caused by a collection of white blood cells usually left over
from fighting some type of infection or inflammation. Calcified means that it’s
basically hardened. So...my guess is that it’s a little hard ball of old white
blood cells.
When Nick’s lab work came back, one of his liver function numbers was
elevated. That really concerned me. Even though it will be 16 years on Sept 3
since Nick’s liver transplant, I still watch his numbers closely. The elevation
of this GGT level had me concerned and I did talk to the doctor about it. He was
not overly concerned, because the number was not extremely high. It was just
higher than Nick’s normal. Since that conversation, the results of the CT scans
showing this calcified granuloma makes me think that is the reason for the
elevation of the liver function. The research I’ve done has also indicated that
some of the medications Nick has to take and the PTLD/lymphoma can also be the
cause of the development of the granuloma. The best news is that it’s calcified,
because that means it’s old.
I am not really going to worry about it until the transplant team tells me
to worry about it. The doctor has ordered a full liver function panel of blood
work next time we’re down there just to cover the bases. I’m good with
that.
Another big praise is that Nick’s IGG level, which basically indicates how
much immune system Nick has, was 1238!! That is the highest it has been in
YEARS!!! It is completely normal. This is a major indicator that the IVIG
infusions are working. We aren’t sure if Nick’s body is actually making any IGG
on it’s own. The only way (to my knowledge) to know this is to stop giving the
IVIG for awhile and we do not want to take that risk.
So with all of that in mind, the oncologist has decided to let us wait 4
weeks until our next trip to Birmingham for chemo and IVIG. This will allow the
doctor to see what Nick’s IGG level does by waiting an extra week. How much
difference can one week make? Infusions of IVIG are only “good” for 2-3 weeks.
That’s why Nick has to get them so often. With his body not making ANY IGG at
all, he needs the infusions of IVIG all the time. The theory the doctor is
testing is to see how low Nick’s IGG level gets by waiting one more week before
“refilling” with the IVIG.
I know this is a lot of information to digest. It’s taken me a few days to
even get close to digesting all of the information.
There are lots of praises and answered prayers here. I am so thankful for
that. I have been feeling really worn out and run down for a while. I REALLY
needed to hear some good news. I am thankful.
Please continue to pray for Nick. Pray for me and Kacie too. When someone
in the family has cancer, it affects the WHOLE family. I think we are all
feeling the effects of fighting cancer for so many years.
Nick is scheduled to return to Children’s Hospital for labs, chemo, and
IVIG on September 12. If anything comes up before then, I will certainly let
y’all know.
Thank you for continuing to walk alongside us through this journey.
In HIS Grip,
Kristy Baxley
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