Thanks to everyone who has been kind enough to ask after the health
of my 16-year-old son Paul. There is good news, and bad news. The
good news is that the pathology (study and diagnosis of the blood and
tissue samples taken from Paul) is complete: Paul’s brain lesions are
not cancerous, or caused by an infectious or autoimmune process. We were
very happy to hear that! In fact, the Neurosurgeon does not think that
the brain masses are related to Paul’s severe headaches. Which brings
us to the bad news. Since last week, we have been working with a Neurologist
who is still trying to figure out what to do about the headaches that started
our whole medical adventure.
We have tried seven drugs in the last two months, some of them twice. I now
have a chart with the name of each
drug down the Y-axis and the following column headers across the
X-axis: Pain, Nausea/Queasiness, Dizzyness, Memory Loss & Fuzzy Thinking,
Tippyness/Falling, Sensitivity to Sound-Movement-Heat/Cold, and Sleep.
We are keeping track of Paul’s response to each drug but have yet to
find one that kills the pain without making him nonfunctional. I begin
to suspect that this will take a long time to work through.
I think we are getting very good medical care. However, I also think
we are creeping toward the edge of medical knowledge. For example, the
MRI (scan of Paul’s brain) done at our regular medical clinic had
much less detail and resolution than the extensive set of scans done
a few days later by Lucille Packard Children’s
Hospital (LPCH). Even I could tell the difference looking at the images
with Paul’s Neurosurgeon before the surgery. The first MRI images showed
one fuzzy brain lesion, the second from LPCH showed two lesions very clearly.
Talking with the LPCH technician who was getting Paul ready to scan again after
the biopsy surgery, I learned that an even more
advanced MRI machine will come on line there soon. It seems to me that as
medical technology advances, body tissue scans are showing more and more
detail and there is very little “normal” baseline to compare them to.
Even if there was a “normal” baseline, it would probably be for adults,
not children, because of laws and regulations quite rightly protecting
children from medical testing.
The surgery scar on Paul’s neck is healing well. He is back in school
but excused from Physical Education (PE) for the rest of this semester.
Your prayers for strength of body, mind, and spirit for Paul and
our family are very welcome indeed. Thank you.
Paul just told me that light exercise and frozen grape
popsicles made his headache better. Have to add those to my chart…