Category Archives: Home & Family

My husband
John Plocher hates to shop but he does have three favorite stores:

• Micro Center
  computer and electronics store chain
• The Train Shop (1829 Pruneridge Avenue, Santa Clara, CA 95050,
  (408) 296-1050) model train shop
• Williams-Sonoma
  cooking store chain

For his recent birthday, I took John to Williams-Sonoma at the
Stanford Shopping Center to pick out
his present. The Stanford outdoor mall has a lovely and innovative flower display
year-round but the Spring flowers are particularly gorgeous. Some of the
colors glow so brilliantly, they do not look real.

John held still for pictures because he was on the phone with our daughter Jessica,
sorting out Poetry and Prose Performances Project (“P4”) computer questions. Jessica is recording
literary classics for P4 on YouTube.

John and Paul

Flowers at Stanford

Flowers at Stanford

John and Katy

Images Copyright 2009 by Katy Dickinson and Paul Dickinson Goodman

Two weeks ago, my 16-year-old son Paul started attending regular school at
Lucile Packard Children’s Hospital.
That is, he was in class for a week then last week was Spring Break.
He starts up again tomorrow. The Hospital School offers two two-hour
sessions a day, morning and afternoon. They have one room for grade school
and another for Junior High and High School. Kids who are not able to go to
the classrooms get hospital room visits by the teachers. Tuesday afternoons, Paul
goes to OT (Occupational Therapy) and PT (Physical Therapy). Paul likes the
Hospital School but misses his friends and regular High School classes.

Paul still has bad headaches and falls down from dizziness several times a day.
He feels dizzy if he walks very far.
The pain is also effecting his memory. Pain is very subjective but I can tell
Paul is in pain when he stops interacting and starts to hunch over. About an
hour after he takes Tylenol (acetaminophen), he opens up, moves more
freely – laughs and talks comfortably. Friday, we start work with the
Pain Management Clinic at LCPH. I hope they will be able to offer
some help or at least a new perspective on the problem. I hope that this is
not one of those problems that Paul just has to grow out of.

The quote on the Hospital School hallway sign offers an image of hope for the
future: “A gymnast in the air, the graceful gull swoops and glides along the
coastal waters.”

LPCH school sign

LPCH hallway art

LPCH garden

LPCH garden iris

Images Copyright 2009 by Katy Dickinson

My 16-year-old son Paul still has constant bad headaches and dizziness.
We are using relaxation techniques and
Tylenol (acetaminophen) to control the pain somewhat. We started Paul this week on
Pediatric Occupational Therapy and we have an appointment next month to start work
with the
Pain Management Clinic at
Lucile Packard Children’s Hospital. Paul will attend the Packard
Hospital School starting next week – approval just came through for
that. So, he does not have to miss out on the second half of his Junior Year
in High School entirely. Your prayers are always welcome.

We have been doing the rounds of doctors (neurosurgeon, neurologist,
pediatrician) recently to see what may help my 16-year-old son Paul’s
headaches and dizziness. The neurosurgeon seems clear that the mass in
Paul’s brain is not causing the problem. He has given us several official names for
that kind of mass. The summary is that it is an area of differently
configured cells which are not cancerous or infected. That is, the headaches
are not caused by cancer, infection, or an autoimmune process (thank God!).

We have tried many different medications – some by prescription and some over
the counter. Some drugs worked better than others but none got rid of the problem.
Our next step is to try biofeedback and related techniques to see how much of
the problem is stress-based. We have an appointment next month with the
Pain Management Clinic at
Lucile Packard Children’s Hospital. We are also working with Paul’s school to
see how Paul can continue his Junior year in High School despite falling down
regularly and having bad headaches.

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…