Category Archives: Home & Family

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…

My son Paul is still recovering from his
brain
surgery last Friday. Today we passed two milestones: he took a shower,
and he got out of the house. Paul had permission as of today to get
the incision site wet, so this was his first hair wash in a week. (This is a 6
foot tall 16-year-old boy we are talking about!) He looks and
smells much better.

John and I took Paul out for a picnic lunch to Palo Alto’s

Johnson Park. He asked for his favorite food from
Darbar Indian Cuisine. We sat on towels
at a damp wooden picnic table under the trees and
ate butter chicken (like Chicken Tikka), Bengan Bhurtha, rice, naan, dal and raita.
I held Paul’s arm to keep him from tipping or slipping as we walked on the wet pavement.
He is moving slow but making good progress in his recovery.

As I wrote
yesterday, my 16-year-old son spent the last few days in
Lucille Packard Children’s Hospital (LPCH)
in Palo Alto, California, for brain biopsy surgery and recovery. We are delighted that Paul got to go home today! He ate some breakfast and a red
apple, walked most of the way up a hallway and back, and practiced going up
and down stairs with two physical therapists before being discharged. Paul
has been brave and patient with this whole scary experience and we are
very proud of him.

We are less happy not to know what is causing his sudden, severe, and constant
headaches. Paul continues to take strong prescription painkillers. He is
frequently nauseous and sees double sometimes but the nurse said those
symptoms will go away
as he recovers from surgery. Despite all of the adventures and excitement of
the past few days, we are still trying to figure out a solution to the original
problem. There are many test results still to come in. Early reports say
that the lesions
(abnormal tissue) in his brain are not malignant
cancer or an infection (hooray!). However, we do not even know if
the lesions are causing Paul’s headaches or just an unrelated thing he was
born with. We may not know for weeks. Once all of the
pathology (study
and diagnosis) is complete, if Pediatric
Neurosurgery
cannot resolve this, we will probably move on to Pediatric
Neurology.

Paul goes back to High School after the President’s Day holiday. Until
then, our job is to help him recover fully from surgery, grow strong again,
cope with the pain, and pray.

As I wrote
yesterday, we are in Lucille Packard
Children’s Hospital (LPCH) in Palo Alto, California, where my 16-year-old
son is recovering from brain biopsy surgery. Paul is doing better today: he took a
wheelchair ride to one of the roof gardens, ate some lunch, and has taken
two walks up and down the hall outside his room. If he keeps up with this
good recovery progress, he can go home tomorrow.

Mostly we spend our day watching by Paul’s bed. From time to time, we
help him with his covers, call the nurse when some machine beeps in a
loud and agitated manner, or get Paul up to walk around again. The other family
in our room mostly speaks Spanish but we communicate well enough to share
the space. They brought in an amazing gelatin cake this morning for their
son – white gelatin with stained-glass-like insets of red, green, yellow,
and orange gelatin. Our family is celebrating my mother’s birthday this afternoon
(a little late due to Paul’s medical situation) so we will be able to share
our cake in return.

Our hospital room also shared a small religious service today.
Two women from the St. Andrew’s
Episcopal Church pastoral care team brought us the bread and wine reserve
consecrated at this morning’s
Eucharist service so that we could be part the celebration.

LPCH has a theme of sea creatures on its signage and fixtures. Chairs
are decorated with cut out starfish and turtles; octopi and rays glow from
lighted frosted glass panels set into the walls. Signs are in English, Spanish,
and Braille. I would rather that Paul not be sick but LPCH is a wonderful
place to get better.

Paul at Packard Hospital

Babar the Elephant, art at LPCH

Navajo Storyteller, art at LPCH

LPCH Octopus sign

LPCH Octopus wall window

LPCH roof garden

Photos Copyright 2009 by Katy Dickinson