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Brandon
Update---November 4, 2005
Being an
outpatient is a mixed blessing.
On the
plus side, there’s the comforts of home: family together,
friends dropping by, the cat and the dog, familiar things all
around (not to mention some privacy!) and a whole lot more.
On the minus side, if you live far away from the hospital you
need to return to for treatment, there’s THE COMMUTE.
Because Brandon’s therapy is complex, given on equipment few
hospitals have, in progress and very hard to change midstream,
we must return to West Los Angeles and Cedars-Sinai every day
(except Sundays) between now and Nov. 19. Today the
therapy and round trip took nearly five hours---a whole lot of
sitting up for someone who previously has been upright for
periods of a half hour or less at a time. Brandon was
exhausted when we got home, but some kind folks at Cedars have
promised us a gurney will come for him when we get there
tomorrow and we’re hoping that will break up the strain.
He truly
is enjoying a great deal about coming home, particularly seeing
people he’s missed (and new friends too), petting the cat (who
LOVES to cuddle up with him on his bed in the family room) and
wielding a remote control with a working mute button. Amy
and Mom keep running and don’t have time to get into trouble
with this new schedule, although we may become addicted to
daytime TV. Amazingly, we make pretty credible nurses, but
have had a couple of amusing incidents, christening Brandon at
least twice when we forgot to release the clamp on his “G” tube
while trying to put in food or medication. (That one will
get you laundry duty!)
Each day
brings new opportunities to live, to learn and to be together.
For this we are tired but truly grateful.
The
Hampsons
Brandon
Update---November 5, 2004
Today was
easier than yesterday, although still there's so much to be
done! We figured out several steps to make Brandon's long
trip to LA more comfortable, including getting a gurney for him
to lie on while he's there and padding up his seat a lot more
for the ride home. He arrived back in Brea feeling far
better than he had the day before, and even wanted to cruise
through town for a short while before going home. In
particular he was excited to see progress on the new Cheesecake
Factory (a favorite place in Irvine, and one we're looking
forward to having closer to us!) and the newly remodeled front
of our junior high (looking nicer!).
He had
more youthful visitors (always a plus), enjoyed his first "real"
shower in many weeks, got up to the living room for some quality
time with our ailing dog, had his trach dressing downsized (less
of a pain in the neck), was happy to see sister Beth arrive
around dinner time and actually "saw" (because he wasn't so
tired this time) ALL the amazing yard decorations some wonderful
people left us on the day he arrived home. (Laurel
Rabjohns, Joni Ward and Mary Eckles, we now know who you are.
Thank you SO much!).
Today he
has his first home physical therapy visit, and we also should
get the date of his (hopefully last) swallow evaluation nailed
down. Last paperwork task for Mom today is getting him a
longer hospital bed, as he's just too tall for this one!
The day's
most precious moment (at least in Mom's eyes) came while
cruising once again toward LA on a beautiful, cloud-filled
morning, Amy in the back seat, Brandon in the front, his head
encased in his Star-Wars-themed helmet (to protect where
that part of his skull has yet to be replaced), leaning back on
a pillow, listening to Hollywood movie soundtracks with his eyes
closed, waving his injured right arm as he "conducted" the
music. It may have made an interesting scene for passerby,
but for us it was no less than stunning.
The days
pass and Brandon grows gradually stronger, and we continue to
thank all those who've remembered him (and us) in their good
wishes and prayers.
The
Hampsons
Brandon
Update---November 8, 2004
Brandon’s
first weekend at home in more than two months was a relatively
quiet one, with several new “firsts” and some very sad times.
His bed
was lengthened at last so that it actually fits his
still-growing, nearly six-foot-tall body, and he finally got a
good night’s sleep in it. He met his outpatient physical
therapist Friday afternoon, was introduced to some new exercises
and began following through on them after Mom and Dad brought
home the prescribed ankle and hand weights---still very small so
as not to overtax his healing and (recently) very underused
limbs.
He climbed
upstairs to his room for the first time and spent nearly two
hours there, initially almost overwhelmed by at last being truly
“home,” and then gradually growing more comfortable in his own
special space. He was glad to see that, despite the fact
that new carpet had been laid while he was away, all his things
were back where they belong, with only a few new
additions---most exciting among them the Excalibur sword he
wished for on his birthday and which now hangs on his wall.
We
journeyed into LA yet again on Saturday for therapy, but felt
fortunate to have Sunday off. The 7th is
Amy’s birthday, and she was away with her UC Santa Barbara
friends on a weekend trip, but Beth was home and she, Dad, Mom
and Bran spent a good deal of time together. We four were
home on Sunday morning when our dog Winnie, a wonderfully sweet
Australian Shepherd who’s been part of our family for more than
a decade, died peacefully. She’d been showing signs of
age, and lost a good deal of weight when she had to be sent to a
kennel during the first weeks of Brandon’s hospital stay.
The vet had done all he could, and we knew she didn’t have much
time. We were grateful that she and Brandon had the chance
to be reunited, and hoped they might have more days together,
but it wasn’t to be. Large dog that she was, she always
had spent almost all her time indoors, and slept her last night
at the foot of Brandon’s bed. The house feels strangely
empty without her lying on the landing or curled up by the
stairs. She was a good dog, and worthy of all our tears.
The
Hampsons
Brandon
Update---November 9, 2004
Brandon’s
big news for today is that the world he sees is wider than it
once was. Thanks to the marvels of modern technology and
the expertise of a very good doctor, some of the pressure has
been relieved on his optic chiasm, and his peripheral vision has
been returned. He still can’t see well in his left eye,
and reading closed captions on the TV (something he’s always
done as one born hearing impaired) or anything smaller than very
large type (and he’s always been an avid reader) is very
difficult. Perhaps, in time, some of this will come back
too, but as yet we just don’t know.
Yesterday
saw him shaving himself and walking out into the front yard
(both for the first time), water painting and playing Parcheesi
with Amy, as well as taking a first try at meditation. (We
know, very 60’s, but they tell us it actually aids healing!
Ohm...) On our LONG way to LA, he offered Amy instruction
in conducting as we listened to music from Ken Burns’ Civil
War. Although Brandon has it down, from the driver’s
seat, Amy’s first flourishes looked just a little too much like
Sorcerer Mickey leading the crazy brooms in Fantasia.
Wish us well on our way today!
The
Hampsons
Brandon
Update---November 10, 2004
Two months
ago today Brandon walked into the hospital for his first
surgery, and our minds were filled with anxiety. Today he
walked all the way up (and then back) the fire road that
separates our street from the one above it, and all we can be is
happy.
Making the
most of the moment is what we’re about just now, looking for the
good, trying to fill each hour with positive, productive
experiences. As we begin our daily drive through Brea
Canyon, we notice sooner how green the hills have gone and how
the trees glisten gold in the morning sun. We roll down
our windows and moo at the long-horned cows. We crank up
the sound and glide onto the freeway to the beat of electric
Bach, and head back toward Brea as Andrea Bocelli stretches for
one more high note.
Brandon
does his therapy, watches TV, plays Life with Mom, shoots the
furniture (and his sisters) with his new Nerf gun, and is,
without exception, as pleasant, engaging and grateful a kid as
God ever gave breath to.
Our days
are simple but good, and spending them together means more than
it ever could have before.
The
Hampsons
Brandon
Update---November 11, 2004
Due to the
doctor's unavailability on Nov. 24, the date for Brandon's
"swallow" test has been moved up to next Wednesday, so his need
to work hard on his throat strengthening exercises to be certain
he passes has increased. As with all else, he does
his job well and never complains, but there's only so many of
these he can do in a day without either feeling faint or getting
a headache. We SO want him to pass (and then be able to
eat and drink something once again), but also hate to see him
have to struggle so much. Finding the best balance is
today's goal.
Yesterday
he walked nearly two blocks (all the way up the fire road and
onto Malibu Canyon), began a book on tape on the ride home from
LA, added some new balance exercises during physical therapy,
whomped Amy and Mom at Uno and watched a bit more of Ken Burns'
Civil War before getting pretty much his worst headache
ever. The part of the tumor they're working on now
lies closest to his eyes, and this seems to be the area where
the discomfort begins. Hopefully when this stage passes,
the pain will as well.
He (and
we) continue to be touched by the many people who follow
Brandon's story and care about his progress. For this, all
of us are truly thankful.
The
Hampsons
Brandon
Update---November 12, 2004
Two months
out from the emergency brain surgery that saved his life,
Brandon is back to “normal” in many ways, and well on his way
towards it in others. Unlike the one-month-mark, he now
can breathe on his own, talk (although still with a somewhat
hoarse voice), use his right hand with some strength and
finesse, walk a reasonable distance and remember much of what
happens in a day. He still can’t eat, having had his last
solid food---a few pieces of French toast---on the morning
before his second surgery. Thankfully, the pain in his
shoulder has passed, ironically enough just after he had an
x-ray to find out what was causing it!
Despite
the lack of pizza, nachos, fettuccini Alfredo, chicken
sandwiches, Caesar salad and ice cream (his favorites in other
times), he seems to be holding his slender weight on the liquid
diet prescribed for his tube feeding, which, it turns out,
really isn’t as icky or scary as it sounded when we first heard
about it. Being his usual helpful self, he sometimes even
assists as Amy or Mom gets it started.
Yesterday
we sped into LA (thanks, we think, to the Veteran’s Day
holiday), had time to enjoy some sun at the Cedar’s Plaza level,
witnessed a film/TV show/commercial? being made (complete with
imported snow!) at Hamilton High School (Robertson just north of
the 10 Freeway), watched a bad old comedy film ordered from
Netflix and walked all the way to Canyon Country Road (about a
six-block round trip). This morning he worked out well
with his leg and hand weights, and soon we’ll be off on our
journey again...with more “swallow” exercises and a book on tape
for the car.
Our lives
all have changed a great deal since early September, but we take
joy in this time and spend it as well as we can. Perhaps
there’s a lesson in that.
The
Hampsons
Brandon
Update---November 15 & 16, 2004
Brandon
had a good weekend, playing Battleship and Mad Libs, listening
to tapes, doing arm, leg and LOTS of speech/swallow exercises
and taking a couple of walks. His recent headaches
continued (we presume due to the new locale/mode of radiation),
but abated enough for him to enjoy visits by his sister Beth and
a good friend he's known since second grade.
Sunday was
eventful on three counts. All five of us (Bran, Amy, Beth,
Dad and Mom) drove over to the family grade school (Fanning) to
do some walking on its relatively flat campus (instead of taking
another trek through our relatively steep neighborhood).
Unexpectedly, construction workers were on site finishing up
some recent renovation work there. Mom (who usually
doesn't do things like this) asked nicely and produced a
district business card, and an obliging construction worker let
us come inside to see what's been done. As none of us had
seen any of the recent work (and most of us hadn't seen any of
the changes done at this school in several years), we really
enjoyed getting some first-hand looks at what's happened to
"our" school.
Sunday's
second big highlight was Brandon beating both his sisters for
the first time at arm wrestling with his injured-but-recovering
right hand. (Please take note that this isn't a typical
Hampson sibling sport, but one that encourages both camaraderie
and confidence just now...)
Sunday's
final BIG event was the arrival of a new large-screen television
(our first!) from Paul, La Habra's King of Big Screen.
With Brandon's vision being what it is, it seemed like an
important thing to do, and he truly was thrilled with it (as,
frankly, we all were). We couch potatoed pretty much all
late afternoon and evening, enjoying 60's soaps and disaster
scenarios more than we'd like to admit. Brandon beamed at
the size of the screen and immediately set to work tuning in the
closed captioning---which he actually can generally read!
Tomorrow (hopefully) he looks forward to trying a video game on
it!
The
Hampsons
Brandon
Update---November 16, 2004
Brandon
had a quiet day Monday, nearly six hours of it spent at and en
route to the hospital. He had his usual therapies, plus
some blood work and a doctor consult, and we learned that the
33rd and last day of this radiation course will be Friday.
He's been off steroids for a while, but he got a new low-level
prescription today to help ease some of the inflammation caused
by radiation. Hopefully this will help his
headaches. His other medications gradually have been
tapered down to the point where he's taking little of any
consequence except an anti-seizure medication routinely
prescribed after brain surgery, and the dosage of this, too, has
been significantly decreased.
He
exercised only a bit this morning, slept much of the afternoon,
and his big recreation of the day was watching Monday Night
Football with Dad.
As this is
written, Amy is coaching him at speech/swallow exercises and Mom
just moments ago could be found collecting recipes for tasty and
exotic soft foods. We're all ever so hopefully he'll pass
his swallow exam Wednesday and at last be able to eat and drink
again! He's been awfully patient (as he always is), but
two months is a LONG time for a teenage boy to go without
eating!
The
Hampsons
Brandon
Update---November 17, 2004
Among the
many things we've learned in all this is that you shouldn't take
an "appointment" as actually happening until you see the whites
of the doctor's eyes. So it is that the swallow test
originally scheduled for this afternoon instead will take place
tomorrow...which just gives us one more day to do exercises and
(hopefully) see Brandon grow still stronger.
Today he
walked farther than ever before (up our fire road and all the
way to the west end of Malibu Canyon's culdesac...several
blocks with only one stop), did leg exercises with Mom (who can
use them too), worked on TV/computer connections with Dad and
greatly enjoyed some new military band CDs on the way to LA.
As we make
our way north and then west on the 57 and 60 freeways each
morning, it's become almost automatic to tick off our family
landmarks, those places made personal to us by lifetimes of
common experience: the old Firestone Scout Reservation where all
the kids went to camp, the girls' Diamond Bar dance studio, the
freeway-bordering high schools of Hacienda Heights where Brandon
and the BOHS band played in field shows, the dealership where
Amy picked out her new car, the old Ikea where Brandon carried
out his computer desk, the restaurant where we celebrated Beth's
first real job, the 605 Freeway, which (followed south)
would take us to our family's first home in Whittier, the hills
of Montebello where Mom grew up, the spires of Los Angeles where
both of Brandon's grandpas worked, Dad's law school, the sites
and attractions of Los Angeles we visited as a family, and the
way further west, traveled in the months since Beth moved to
Santa Monica...All these familiar places, now seen so many times
colored by this new experience, suddenly feel forever changed.
If all
goes according to plan, Friday will mark the end of these daily
trips to Cedars-Sinai, at least for this phase of Brandon's
treatment. It's been a time-consuming and sometimes
difficult commute, but we feel fortunate to have traveled this
path so many times with someone so vulnerable in the car and had
it all go without problem or incident. Our 90-mile-a-day
round trips eventually will add up to nearly 1400 miles---a
distance equal to that between home and Houston---and we feel
truly relieved to have come all this way so uneventfully.
As we
approach yet another transition in this strange journey, we
again feel a mixture of anticipation and unease, and long for
the way ahead to be smooth.
The
Hampsons
Brandon
Update---November 18, 2004
Just a
short note and on to the day's events!
Brandon
had the luxury of sleeping late (a la teenage boy) this morning,
as we didn't have our usual trek into LA. He showered,
watched some sci fi, exercised some with (light) weights and had
a leisurely breakfast of unflavored (for good reason, as it
doesn't pass by the taste buds) Nestle Nutren 1.5.
We are
eagerly awaiting this afternoon, when we'll head yet again into
LA---but this time for his 4 p.m. swallow test. We do SO
hope he passes!
The
Hampsons
Brandon
Update---November 19, 2004
Cheers!
It was
dinner at 8 at the Hampson House, and although the youngest
member of the family had only small sips of apple juice and
water and tiny bites of mashed potatoes with gravy (chased by
chocolate pudding), there never was a meal in all our lives that
meant more to any of us.
At about
5:30 yesterday afternoon, Brandon was given the all clear to eat
and drink again, having had nothing except four spoonfuls of
“test” pudding...not even water...since September 12.
Needless to say, we all are so very thrilled and relieved with
the doctor’s conclusion. He termed Brandon’s swallow
progress in the last month “remarkable,” and said the gains he’s
made---coming out of such an unresponsive, “paralyzed” throat
condition, usually aren’t achieved in less than six months to a
year. We all take things like eating and drinking so much for
granted, and seeing someone we love lose these abilities isn’t
an experience we’d want to share. When Mom washed out
Brandon’s dish last night, she cried.
For
awhile, it’s advisable to keep Brandon’s diet simple, mainly
soft foods like puddings, soups, pastas, rice, chicken salad and
the like, as well as juices, although we did get permission for
smoothies and coffee drinks (also some of his favorites), as
well as cheesecake. He’s been instructed to chew
thoroughly, swallow twice after every bite and follow each with
a sip of water to make sure all is working as it should be and
avoid risk of aspirating something into his lungs.
So far so
good...
As always,
our continued thanks to all those who follow Brandon’s progress
and keep him in their hearts. You are a great source of
strength to him---and to his family as well.
The
Hampsons
Brandon
Update---November 22, 2004
Brandon
had a good weekend, drinking and eating (at least in small
amounts, and after very careful chewing) some of his favorite
things, putting in some quality exercise, chatting with his
sisters, watching movies on TV and (most excitedly) getting
together with the Brea Olinda band, at least for a short time,
at their last field show of the season. He SO loved seeing
the kids again---and the feeling seemed to be mutual.
He worked
with Dad getting the TV and the computer to talk, something that
should be easy, but (as often is so) turned out to be pretty
tough. They wrestled it through and made it work, then sat
down to tackle Brandon's new Sims2 game---ordered as a birthday
gift before any of his troubles became known, but issued and
received only afterwards. It was good to see them side by
side playing the game he so looked forward to, but hard to see
how much Gary had to read for him, even on the big screen.
For a
person born with less-than-perfect hearing, good vision is
extremely important. Brandon speaks very well, and most
people who meet him don't even realize he has a hearing deficit.
Still, he belongs to the hearing-impaired world, and closed
captions and lip reading always have helped him fill in the
gaps. Like many with hearing loss, he developed an early
love of computers, and could type, play games, surf the internet
and design web pages with lightning speed. In the broader
scope of his situation, losing his ability to do these things
with ease probably isn't that noteworthy, but seeing his skills
so compromised is still a very hard thing.
No longer
on a program of daily trips to LA, we look forward to doing more
"fun" things this week, getting out of the house locally to see
how fall feels in Orange County and sampling as many foods as we
can along the way. Brandon, no doubt, will keep his
always-slim profile, but the rest of us will have to fight
getting fat.
Every day
brings yet another card, call, note, e-mail message or other
remembrance for Brandon or all of us here at the Hampson House.
The great kindness and caring of so many touches us deeply.
Thank you so much for thinking of him.
The
Hampsons
Brandon
Update---November 23, 2004
As of
today (and for the first time in six years) all the Hampsons
again are under one roof, as big sister Beth moved back home
from her Santa Monica apartment over the weekend. Amy
sublet her room in Santa Barbara a few weeks back, so our wagons
now all are officially circled, and Brandon could not be more
delighted.
Ever since
they were small, the kids have gotten along well---teasing a
little, but never bickering, and always supporting each other.
Both Beth and Amy had gone off to college by the time Brandon
reached high school, and he missed them a great deal during
large stretches of these formative years. To have both of
them back home for extended stays is a real treat for him.
Over the
years we’ve spent a good many great times together as a family,
gathered around the kitchen table at dinner, working on
projects, attending school, scout or sports events, concerts and
plays, eating out and traveling every summer to some special new
place. We started out with an empty map when Brandon was
four, and have crisscrossed it many times with yellow lines,
marking our journeys by car, plane and train---visiting more
than 30 states, Eastern and Western Canada and several countries
in Europe along the way.
We’ve
cruised the San Juan Islands, shopped at Marshall Field’s,
walked Boston’s Freedom Trail, played Pirate Golf at Hilton
Head, “helicoptered” over the Statue of Liberty, floated at dusk
down the Snake River, swayed to the rhythms of Bourbon and Beale
streets, marveled at Mount Rushmore, kayaked on Lake Washington,
braved Branson’s country music traffic jam, taste tested at Ben
and Jerry’s in Vermont and the World of Coca-Cola in Atlanta,
lazed in Key West, shaken Mickey’s hand at Epcot, hiked under
Niagara Falls, taken an “alligator swamp tour” outside New
Orleans, gotten lost in the Smithsonian and the Metropolitan
Museum of Art and stood by waiting when Old Faithful wasn’t.
We’ve stormed Ticonderoga, taken pause at Gettysburg, driven a
covered wagon on the Oregon Trail, watched the shadows fall on
Old Quebec, hot-air ballooned over Del Mar, stood on the rim of
the Grand Canyon at sunrise, careened in a cab through London,
savored pain au chocolat in Paris and stared in awe at
Stonehenge, Edinburgh Castle and Saint Chapelle. This was
the first summer we didn’t take a trip together, as we were
waiting for schedules to coincide so we could visit Hawaii for
the first time this month. Perhaps this still will happen
somewhere down the road.
Brandon
had a tougher day yesterday, punctuated by several headaches.
Still, he had enough good moments to take one walk, have
physical therapy, enjoy hearing sister Beth read the morning
news, begin making a collage, dig into a new collection of Drum
Corps International CD’s and savor his first very small
cheeseburger and salmon cakes a la Amy. We are grateful
for all his good moments, and anxious to see him grow stronger.
The
Hampsons
Brandon
Update---Thanksgiving 2004
As we
approach the first major holiday since the events that turned
all our lives around, we find it both ironic and appropriate
that this holiday is Thanksgiving.
While we
fervently wish none of this ever had happened to Brandon, and
never would ask anything more if he could be relieved of this
burden, we also know well that we have much to be grateful for.
That he’s
here with us to celebrate this holiday is our greatest blessing.
We intend to enjoy every moment with him, and make certain he
enjoys it all too.
That so
many people: old and new friends, co-workers at Beckman Coulter
and the Brea Olinda Unified School District, neighbors,
community members and hospital staff, people we’ve known for
years, people we’ve only just met, and people whose names and
faces we don’t even know have supported him and us with such
caring through the long weeks of this struggle continues to awe
and amaze us.
Brandon
has received hundreds of cards, letters, e-mails, telephone
calls and gifts, all of them wonderful beyond words. Many
people took the long trek to visit him in the hospital, or have
dropped by since he came home. Others baked, cooked meals,
decorated our front yard for his homecoming or did chores to
help us out through these difficult days---and everyone all
along the way has been so unbelievably kind.
We’ve had
the privilege always of knowing good people who worship in
different ways, and always have believed there are many paths to
a spiritual existence. To have had people of so many
faiths and denominations---Christians, Jews, Muslims, Buddhists
and Hindus---asking blessings on Brandon has given us both
comfort and hope, and provided a clear sign that, despite our
differences, we all share so much in common. We know that
Brandon’s story has reached out far beyond our community and our
circle of friends, that the e-mails of his daily progress have
stretched out to at least three continents, that masses have
been said for him, that he’s been included on the prayer chains
in scores of congregations, mentioned aloud by the highest of
elders in Salt Lake City and taken on as a project by a convent
of retired nuns in Chicago. For all this love and good
will, we are deeply, eternally grateful.
Happy
Thanksgiving from Brandon and all the Hampsons
Brandon
Update---November 30, 2004
Brandon
had a pleasant but quiet Thanksgiving weekend, doing what most
folks do: watching parades and football games, enjoying visits
with friends and eating good food (though in smaller bites and
portions) with his family. His favorites this year were
stuffing and pumpkin pie.
He and Amy
reverted to childhood times to make holiday “hand turkeys” which
still adorn our TV cabinet (and gave his physical therapist a
chuckle). Together, we went for walks, played games, read
aloud, watched movies, exercised and just generally enjoyed
these peaceful days.
On Friday
night, his feeding tube began to hurt, and although his
temperature remains normal and the site appears only irritated
(not infected), we’ll be off to West LA late this afternoon to
have it checked out by the surgeon who put it in two months ago.
Based on what he sees and the recommendation of Cedar’s Rehab
Department director, we think (and hope) it probably will be
removed some time this week. Although he still isn’t able
to eat quite as much or as quickly as he did before, his regular
diet can be supplemented with liquids like Ensure for a while to
make certain he gets enough calories.
As
Brandon’s immediate challenges fade and he approaches a more
“normal” life, we have less to tell about in these updates.
We began writing these messages way back in mid-September, when
his situation was so precarious for so long...when we were
keeping 24-hour shifts by his bedside and there was just no time
or place to make or take telephone calls. When we began
writing, we never dreamed that Brandon’s story eventually would
reach out so far, or that so many would feel touched by his
struggles and triumphs. It was our mission to link him
with those he knew and let them know how he was doing. It
was our intention to share how he faced up to difficulties and
continued to embrace life. We wrote, in large part,
because we knew his deepest desire was “to help people” and it
felt as though, in this strange way, he could.
Little did
we know how much he, and we, would be helped in return.
This is
not a final message, but a signal that Brandon’s “daily” update
now will become more occasional. We’ll be certain to pick
up the thread when there’s something of interest or importance
to report, and we will (hopefully with Dad’s help) find a way to
post a few photos of Brandon, as many who’ve been part of this
chain never have met him and might like to see his smile---both
before and since all this started.
As always,
our deepest thanks to all who’ve supported Brandon and us all
through the many long and difficult days of this recuperation.
The road ahead promises its own share of challenges, but we’ll
face them together, and take comfort from the belief that many
will continue to keep this very special young man in their
thoughts and prayers.
The
Hampson Family
Brandon
Update---December 17, 2004
In the
days since we last checked in, Brandon has made more progress,
walking farther, lifting heavier weights, participating in new
activities and taking on more of his own care. He
particularly has enjoyed getting out and seeing people and doing
things, whether celebrating his sister’s birthday at the local
Italian eatery, applauding (the band, in particular) at our high
school’s annual holiday program, attending the City’s Christmas
tree lighting or strolling around the lake at Tri-City Park.
Visitors are a source of excitement as well, and always are
welcomed with great joy.
He’s
helped pick out presents (mail-order only, much to the chagrin
of our FedEx and UPS delivery men!), wrapped packages, sipped
spiced cider, swayed to a few seasonal tunes, helped deliver
toys to the less fortunate and enjoyed the lights on “his”
holiday tree. Still to come are two special musical
treats: a trip to Los Angeles for a performance at Disney Hall
and a visit to the Pond to hear the Trans-Siberian Orchestra.
Medically,
he’s somewhat stronger, although he tires easily, still has
trouble holding up his head without discomfort and continues to
have pain at the site of his feeding tube. We’ve gone through
virtually all the remedies the doctor in charge of this
suggests, and think we may be ready to give up and chance having
to have another installed down the way when he has the missing
portion of his skull replaced. He’s been back to Cedars to
check on the stomach tube and for a monthly exam, his blood work
remains outstanding (better than the nurse’s who took it, she
said), and he’s scheduled for a follow-up MRI after the holiday.
Through St. Joseph’s in Orange, he’s benefited from physical
therapy (new exercises!) and occupational therapy---primarily a
special kind of amazingly gentle massage (Felden Krais) that
almost always puts him right to sleep---very amazing to watch,
and not too hard to do!
This
afternoon, he’s off for the first time to rendezvous with his
buddies at Baja Fresh, once a commonplace Friday afternoon event
in his life. He’s looking forward to it SO much, and
resting up as this is written.
We
continue to hear from people who have followed Brandon’s story
and sent him their support, and always are deeply grateful for
the kindness and caring so many have shown him and us.
A small
photo gallery of Brandon then and now can be found
on this website.
Many the
spirit of the season be with you.
The
Hampson Family
Hampson
Holiday Letter 2004
Season’s
Greetings from the Hampson House, and best wishes for health,
happiness and peace in the coming months.
This year
has been an unusual and challenging one for us, beginning with
much joy and accomplishment and then turning on a path that’s
tried us in ways we never imagined.
Beth, our
oldest, celebrated her 24th birthday this spring,
and, until recently, was living in an apartment in Santa Monica.
Although she did well teaching junior high, she decided she’d
find more fulfillment in another field, and took a job she
enjoyed doing administrative assistance, public relations, and
fund raising for the California Graduate Institute, a psychology
college in Westwood. She took several UCLA extension
courses in this field during the year and enjoyed them
immensely, socialized often with friends, got to know her way
around LA, jogged to the beach, sampled international cuisine at
a variety of unusual restaurants, had her first celebrity
sightings (Pierce Brosnan and Jason Biggs), visited college
friends in San Francisco and at UC Davis’s Picnic Day, got her
feet wet in her first political campaign and came back to Brea
for frequent visits.
After four
years at UC Santa Barbara, Amy graduated with BA’s in
communication and film studies. She did well in her classes,
loved living right on the beach with five friends, worked
part-time for Santa Barbara’s Restaurant Connection (delivering
food to some pretty posh places!) and greatly enjoyed serving as
producer of the UCSB film department’s annual Reel Loud Film
Festival, a wonderful evening of student-made silent films and
live musical acts that drew a record crowd of 800, including
Mom, Dad, Brother and Sister. She graduated (with some fanfare,
an outdoor ceremony right on the lagoon and a catered lunch for
families by her and her roommates!) in June, served in the
summer on the staffs of film festivals in LA and Santa Barbara
and had just rented an almost impossible-to-find Santa Barbara
apartment and accepted an additional part-time job as a reader
for the university’s film department when all our lives changed
and she came back to be with us.
Brandon
had a great senior year of high school, getting to know everyone
as webmaster of the school website and loving the success of the
marching band, which had its best year in a long time. As
a bass drummer, he also enjoyed being in percussion ensemble, a
group which was thrilled to do especially well in competition
this year. He continued in karate, advancing more slowly
than he might have wished due to a busy school schedule, but
took a first-place competition trophy right before his promotion
to green belt with one stripe. He learned to drive and
began taking groups of kids home and to their favorite Friday
afternoon hangout, the Mexican restaurant Baja Fresh. In
January, he was thrilled to get his own car--a dark gray Toyota
Matrix. At senior honors night, he received the school
technology award and a Marine Corps Semper Fi Award for music,
and at Grad Nite, 400 kids wore the T-shirt he designed---the
most popular one in many years. He graduated wearing a
National Honor Society stole, a four-year band medallion and
Brea’s Mayor’s Youth Service Award for 500 hours of community
service...and had a huge smile on his face as he accepted his
diploma from Mom.
He was
deservedly proud of doing well, and had come a long way through
patience and persistence, having been born hearing impaired and
really not even learning to talk much until he was well into
kindergarten. Such deficits aren’t easily overcome.
Most hearing-impaired students don’t do well in school, and few
go on to college. Brandon was happy to be accepted at all
the schools he applied to, and took a deferred enrollment at
Chico State in Northern California, one of the few schools that
offers the business/technology major that interests him.
He planned to take a “gap” year before heading off to college,
and was working on a variety of academic, athletic, leadership
and social activities to enhance his opportunities for college
success.
In the
summer, he spent several days helping out with the dedication of
the new Brea Museum, got an improved version of the high
school’s website online and greatly enjoyed flying away on his
own to attend a college forum held in Colorado Springs by
SuperCamp! (We know it sounds like a dumb name, but we can’t
speak highly enough about the quality of this experience!)
He served as an assistant instructor at the high school’s Band
Camp, and signed up as a volunteer in the presidential campaign,
though he never did get to serve.
In early
September, he realized something was wrong with his vision, even
though he’d been to the optometrist less than a month before.
A return trip showed the problem was uncorrectable by
refraction, and a referral to a neurologist swiftly was
scheduled. In the anxious days that followed, MRI’s
revealed a tumor in his temporal lobe, and a frantic search for
the best brain surgeon began. One week after the day he
drove himself to the eye doctor, he underwent a full craniotomy
at Cedars-Sinai Hospital in West Los Angeles to determine how
treatment best should be done. Although he initially
appeared to be recovering well, undetected bleeding led two days
later to an emergency craniectomy, where the left front portion
of his skull was temporarily removed to relieve pressure.
As a result of the severe swelling which led to this surgery, he
lost much of the use of his right side, ended up with a
tracheostomy and a feeding tube and had to learn to walk, talk
and use his right arm again. He lost his short-term memory
and 20 pounds, and was in ICU two weeks and the hospital for 53
days, attended day and night by at least one member of his
family. As soon as he was able to start working toward his
own recovery he became a favorite of the staff---always working
hard and staying so very positive and polite. He finally
was able to return home in early November, but continued in
therapy until just before Christmas.
We are so
terribly proud of his progress in this, for---as always has been
his way---he’s faced these many trials with great strength and
perseverance. We all have been blessed by the caring of
many during these anxious days: old and new friends, family, the
wonderful people at Gary’s work and Terri’s school district, an
amazing hospital staff and literally scores of others, known and
unknown, who’ve followed Brandon’s “story” through frequent
e-mail updates. All this has provided Brandon---and
us---with an amazing amount of support through some terribly
difficult times. Foremost of all, his sisters both have
returned to live at home, to his great delight. They
always have been their brother’s staunchest supporters and
allies, and he’s thrilled to have them near, going for walks,
helping out with exercises, accompanying him on trips to LA for
tests or therapy, researching ways to better care for him,
providing moral support and laughs and/or just being there to
read the news, play a game or take time to “chat.”
Beth
recently took a new part-time job in fund raising with the
Children’s Hospital of Orange County Foundation. Both she
and Amy will be taking the GRE in January, and have their eyes
on master’s programs at USC, Beth in public administration and
Amy in communication management, with an emphasis in arts and
entertainment. Meanwhile, their brother continues to
recover from the brain trauma he suffered in September and still
has many hurdles to cross. We remain committed to facing
them together and doing all we can well, and this brings us a
measure of peace.
In the
midst of all this, Terri finished her year as president of the
local school board. She gave up most of her other
entanglements, as secretary of the Brea Historical Society and
as a member of the local Family Resource Council, the Olinda
Museum Committee and the Brea PTA Council. She has another
two years on the school board, and will see how the coming
months go before making a decision on how to proceed. In
mid-December, Gary was appointed Deputy General Counsel for the
legal department at Beckman-Coulter, and although this
announcement comes at a difficult time, we couldn’t be happier
for him or prouder of him.
Gary’s and
Terri’s mothers continue on at their local addresses, Terri’s
mother celebrating her 91st birthday last summer and
now having resided more than four years at her Brea retirement
residence. Gary’s mom remains in her own home and stays
very active, taking on a leadership role in her church, working
the polls at election time, driving out of town to visit friends
and his brother and sister-in-law in Idyllwild and assisting in
the past few months with Terri’s mom as well. We greatly
appreciate her help.
Sadly, in
the midst of Brandon’s illness, we lost our sweet dog Winnie,
who had to spend several weeks in our friendly nearby kennel
during his hospital stay. She had been ailing for some
time, and we felt fortunate that Brandon was able to come home
and be with her for a few days before she left us. Our
kitty, Gabby, is a great companion to us all, and most enjoys
perching on Brandon’s bed (with its wonderful, handmade flannel
coverlet) or trying to subdue the penpoint red laser
light---with Brandon gladly leading the chase.
Moreso
than ever, this year we at the Hampson House understand what
great gifts health, happiness and peace truly are. May
they be yours in the days to come.
Happy
Holidays From the Hampsons
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