|
Brandon Update---October 7, 2004
A month ago today, a neurologist
in Brea held an MRI film up toward the fluorescent lights in the ceiling
of an examination room, and we saw why Brandon's vision had mysteriously
become so quickly blurred. Our son was diagnosed with a brain
tumor---and all our lives were turned upside down in an instant.
From that moment, all we could
think of was where we could find the best possible treatment -- what we
could do to beat this thing back.
That day, we made an appointment
with a neurosurgeon in Orange County, a first step on the road which
brought us to surgery at Cedars-Sinai only a few days later.
As if to mark this unhappy
anniversary, Brandon had a difficult day. He was tired, and -- for
the first time -- in his own words "depressed." It's hard to see
him be so physically debilitated and dispirited as well, but they tell
us depression is a common side effect of radiation therapy. We can
only hope it passes as swiftly as it came.
The staff here in rehab seems
nice enough, and promises up to three hours of therapy a day -- speech,
physical and occupational. A social worker coordinates its
delivery and a neuropsychologist keeps track of cognitive performance
and checks in on Brandon's mood.
Several of his doctors dropped
by today, as well as the nutritionist who plans to up his calorie intake
so that he doesn't lose any more weight. Always thin, Brandon was
proud of the 15 pounds he'd put on this summer, but now has lost all of
that and more. We wish we could ply him with ice cream, but that
will have to wait.
As we often say, we've learned
to take this one day at a time. Each day is a gift, and while some
days it may be harder for us to see that, each evening we still are
thankful, and each morning brings new hope.
Thanks so much to each of you
who’s with us in spirit, thought and prayer.
The Hampson Family
Brandon Update---October 10,
2004
Brandon’s spirits were lifted a
bit over the weekend, and today he seems far more on track and positive.
He still has all his assorted tubes and wires, and his swallow hasn’t
improved, but he had lots of welcome visitors (some even his own age!)
over the weekend and was gifted with a laptop---now mostly to view
DVD’s, and hopefully later for gaming as his right hand improves.
Just now, we learned that the drug therapy that’s been held off because
Brandon hasn’t been able to swallow will begin tomorrow, with the pills
mixed into applesauce as part of his “tube feed.” This is
excellent news, as the synergy created through combined radiation and
drug therapy is considered highly important in tumor treatment.
Today marks the one-month
anniversary of Brandon’s first surgery. The swiftness of the
events that led to it, and the good fortune we had in finding his
doctor, are stories that still amaze us...and perhaps may interest you,
too.
Brandon’s tumor was diagnosed in
Brea on Tuesday, September 7, and he was referred for an appointment the
following day with neurosurgeon Bradley Noblett, who works out of St.
Joseph’s in Orange. At that first meeting, Dr. Noblett read his
MRI, wrote an order for more comprehensive testing and talked over both
how to get inside to see what was going on and who might do it best.
Although brain surgery is part of his specialty and he was willing to do
Brandon’s, he indicated the location of Brandon’s tumor made getting at
it tricky. When asked what surgeon HE would choose in a similar
situation, he quickly came down to one name: Dr. Keith Black of
Cedars-Sinai.
We came home and hit the
Internet, learning as much as we could bear to about brain tumors and a
whole lot about Dr. Black. Everything led us to a single
conclusion: he was the one. We were back at St. Joseph’s that
afternoon for more MRI’s, and hand delivered the results (such speed is
almost unheard of!) to Dr. Noblett’s office before he left for the day.
There’d been a cancellation in his appointment schedule the next
morning, so we were able to squeeze in early, just after his bi-weekly
conference with other area neurosurgeons, where he’d shared Brandon’s
slides and gathered opinions. When we saw him, he went over the
results of the enhanced MRI’s and asked what we wanted to do. When
we said we’d like a second opinion with Dr. Black, he warned us that
appointments with his office sometimes take several weeks---but agreed
to do all that he could.
We left the office and headed
home. Terri picked up her 91-year-old mother and took her to
lunch, while Gary and Brandon headed to Baja Fresh, one of Brandon’s
favorite hangouts. As they walked in, they noticed Sue Ann Cross,
Brandon’s hearing-impaired teacher from pre-school through high school
graduation, seated just outside. How nice it was to see someone
who’s meant so much to us all! Gary and Brandon had only started
to eat when Dr. Noblett’s office called. Dr. Black would see
Brandon in just three hours!
A few rushed phone calls brought
everyone together and we sped toward the freeway, only to find the
Pomona looked more like a parking lot than we’d ever seen it! We
arrived late for the appointment, but the doctor had been detained too.
Dr. Noblett warned us that we might never actually see Dr. Black, but
the man himself walked in, flanked and followed by an army of
assistants. Reviewing Brandon’s slides, he recommended a more
extensive approach to the surgery than Dr. Noblett had, proposing a
“full craniotomy” --- a far more extensive opening of the skull, since
he felt the risk of bleeding might make it necessary to “get in (or, as
it turned out, back in) to stop it in a hurry.”
By this time it was past 5
o’clock on September 9. One by one, staff members trouped in,
papers were signed, decisions made, and news of when the surgery might
be scheduled trickled in. At first Brandon was on the waiting list
for the following day, and then we were told he was on for 7:30 a.m.!
We still had to get his lab work done, so there was a mad dash to
radiology for a chest x-ray, to the lab for blood work and to the Taper
Imagining Center (next door) for an even more precise “mapping” of
Brandon’s brain---all before these facilities closed. Brandon went
into this last pre-op test with his sister Beth, who had arrived from
her job nearby. He emerged with small magnetic circles (looking
very much like Lifesavers) all over the top of his face.
It had been less than a week
since Brandon first visited the eye doctor and learned that “something
was wrong with (his) brain,” but these were very stressful days.
His vision was bothering him a great deal, so much so that reading was
impossible. To distract him, we looked at movies and played a word
game he found on the Internet that really required concentration---so
much so that you just couldn’t think about anything else. He’d
gone to the high school’s band practice the Tuesday night of the day he
was diagnosed. Although he graduated in June, he’d assisted at
summer band camp and really loves the kids, so this was where he had to
be. He didn’t tell anyone what was going on with him, just walked
around and visited. That night before surgery, as he came out with
the “Lifesavers” stuck onto his face, he had to be worn out and scared,
but he never let on. Instead, he was clowning around and dancing
with his sister.
We look forward to the day he
dances again.
Dr. Black made the cover of
Time in July 1997. The text of that story is found here:
http://www.time.com/time/reports/heroes/tumor.html
The Hampson Family
Brandon Update---October 11,
2004
Considering all the progress
Brandon has made up till now, today was his very best day. In the
morning, he added several new exercises to his right arm and
swallow-strengthening routines, worked hard at sitting and standing
straight and strong for several minutes and later “spoke” (though in a
breathy, labored way) for nearly a half hour with the “speech button”
inserted into his tracheostomy.
In the afternoon, he was removed
entirely from tube-fed oxygen for the first time. We assumed this
breathing-entirely-on-his-own period would be spent at rest, but
couldn’t have been more wrong! The therapists quickly got him up
onto his feet, and---while closely monitoring his pulse oxygen---helped
him walk (in a walker) 30 feet from his bed to the far side of the
hallway! After a brief rest in a wheelchair, he walked back to his
room and was ready for bed. He’d been off oxygen almost 20
minutes.
In this and other sessions,
Brandon continues to work diligently at his therapy, always agreeing to
do more when he has a choice, and remembering to thank those who’ve
helped him. He smiles and waves a lot, has become a bit of a
favorite on the rehab floor, and makes friends in other places too.
Our family has been strengthened and supported by the caring of many
people we know well, yet we still often are amazed at the kindness of
almost strangers. The lab tech in radiation therapy always seems
to enjoy visiting with Brandon and his regular crew (Mom and Amy).
Today, as he wheeled Brandon out, he seemed to have an inspiration and
asked what kind of music Brandon liked. Gathering the information,
he headed inside the “control room” and emerged with two CD’s: Bach and
Louis Armstrong. We assumed he planned to put one of them on in
the treatment room when Brandon returned tomorrow, but instead he
insisted that we take at least one of them upstairs “on loan” so that he
could enjoy it sooner.
In the toughest of times, kind
people and simple acts truly do make a great difference.
As always, our sincerest thanks
for your continued interest and support.
The Hampson Family
Brandon Update---October 12,
2004
It’s just Tuesday, but Brandon
already has met his speech goal for the week, “talking” for more than a
half hour today with his trach cuff deflated. It isn’t a “real”
voice yet, but it has air and movement, and that’s a step in the right
direction. He wished out loud some of his hopes for the future,
including eating favorite foods again (pizza, burgers and nachos) and
doing some favorite things (seeing friends, going to Baja Fresh, being
with the band, going to the movies with Mom, Dad and Sisters, and just
hanging out at home).
He watched a good deal of
the movie Patton on his computer, played the card game War and
the game Connect Four, and allowed Mom to trim his hair and Amy and Mom
to fancy up his new (thankfully somewhat larger) room – 7924.
One month ago, on Sunday,
September 12, Brandon was rushed to emergency surgery because of
bleeding in his brain. The day before, his recovery from the first
surgery (to determine how best to treat his tumor) initially appeared to
be going well. He was breathing unassisted, was able to respond to
verbal and physical commands, and even had begun to drink and eat soft
foods. But some time on Sunday things began to go wrong. He
started to say things that didn’t make sense, was rude to one of the
doctors, and seemed not at all like the young man we know. At
first the problem was assumed to be a drug interaction between pain
killers and steroids needed to keep swelling down, but tests were
ordered to make sure. It was Sunday and the hospital’s CAT scan
facilities were busy, so there was a wait for the machine. By the
time Brandon got into the scanner, his breathing and heartbeat stopped.
The nice young surgeon from Dr.
Black’s group who was on duty that Sunday had met Brandon the day before
in recovery, and had asked him a question but received no response.
Mom indicated that he might do better if he spoke more slowly and looked
at Brandon, because Brandon was hearing impaired. “I know
something about that,” he replied, and turned to show her that he, too,
wears hearing aids. It was this same doctor who performed the
emergency surgery on Brandon that night, and who later came to tell us
how much trouble Brandon was in. Only later, from little things
said in conversations with doctors and nurses and others, were we able
to piece together more of what happened that night. One staff
member told us that she’d never seen a team get to work more quickly
than when the Code Blue was called. Another said the way Brandon's
doctor got everyone in line and on task...even people who had to assume
duties they 'd rarely had to...was a thing of beauty to behold.
And even now, whenever that young doctor with the hearing aids visits
Brandon, he always seems amazed, marveling that someone “brought back
from the brink” is making the progress he is.
Tonight, Brandon laughed, rolled
his eyes at Dad’s jokes, enjoyed winning a few games, and
asked---again---what day it is and when he will be going home.
“Soon, Brandon, maybe two weeks or so,” we were able to truthfully
answer.
To all of you who continue to
share this journey with us, our thanks for your support, thoughts and
prayers.
The Hampson Family
Brandon Update---October 13,
2004
Today Brandon got more or less
fully dressed, walked (in a walker with the assistance of two amazingly
encouraging people who were born to be physical therapists) out to the
far edge of the hallway, sat in a wheelchair for a half hour, shot (with
his left hand) 10 Nerf basketball baskets, played Connect Four with Amy
and Blackjack with Mom, watched the last debate and cast his very first
presidential ballot. Using the tracheostomy plug, he said the
alphabet, counted to 20 and spoke a few words to his dad on the phone,
an exchange Gary referred to as “the best words (he’s) ever heard.”
According to the volunteer who delivers mail, Brandon also received more
cards today than any other patient in all of Cedars-Sinai Hospital!
(Thanks to all our correspondents for their wonderful, continuing
kindness.)
When he was weighed this morning
(hanging there in a sling-like contraption that looks like the lift used
to dangle feeder cows over hungry dinosaurs in Jurassic Park)
he’d gained back three and a half of the 23 pounds he’s lost---so
thankfully he’s back on the right track. Late today we were
surprised to learn that early tomorrow morning he’ll be having another
videotaping of his swallow---something we’d earlier been told wouldn’t
occur again for “at least another two weeks.” We’re holding our
breath and hoping, and will see how it works out…
As always, the knowledge that
others care about Brandon and share his journey comforts and strengthens
us all. Thank you for your prayers, kind thoughts and good wishes.
The Hampsons
Brandon Update---October 15,
2004
Brandon intensified his efforts
in therapy today, speaking better and longer with the "speech plug" in
his tracheostomy tube, pulling on his own shoes, sitting taller,
standing stronger and taking some surer steps. Using objects in
his room as rehabilitation tools, he "dusted a tray" and "pushed an IV
tree."
He tossed a Nerf football,
played the (politically incorrect) card game Old Maid (No, we won't tell
who won!) and greatly enjoyed a visit from "Shanna," a member of the
Cedars-Sinai volunteer corps who also happens to be a black toy poodle.
While he unfortunately didn't
pass his second swallow test, he did tentatively lose one of his more
uncomfortable tubes, and that we celebrate.
Amy and Mom gradually learn more
and assist better in Brandon's care, becoming experts at simple tasks
and advocates for those things where keeping to a schedule makes a
difference. Having spent hundreds of hours immersed in the rhythm
of Brandon's days, understanding what needs to be done and when becomes
almost second nature -- even for those who never envisioned trying their
hands at nursing.
As another week draws to an end,
thank you again for following us on this un-chosen journey. The
caring and concern of many helps us as we make our way.
The Hampsons
Brandon Update---October 18,
2004
First rain of the season, first
rain in six months, and we all weren’t standing out in the patio,
welcoming it as we once would have.
Brandon had a difficult weekend.
Human or otherwise, objects at rest tend to stay at rest, and for him
this meant weakness combined with an opportunistic infection to send his
temperature up and his ability to do therapy down from early Saturday
on. The culprit turned out to be his “pik,” the arterial line put in
several weeks ago to facilitate drawing blood and giving injections.
Tomorrow the doctors will re-evaluate his condition to determine whether
a new one should be installed or whether the smaller number of tests he
now needs makes it less necessary than it once was.
In the wake of all this, his
right shoulder, which was identified early on as “partially separated”
from the stroke-like weakness caused by his brain swelling, continues to
cause him significant pain. Once the infection is under control, a
different kind of shot---this one aimed directly into this so-tender
region---should help ease that discomfort somewhat.
While company is usually
welcomed, it was fortunate that this was a quiet weekend. Gary was
Brandon’s slumber buddy for the first time Saturday night, and enjoyed
the time, though experiencing the innumerable sleep interruptions that
hospitals are famous for can lead to a groggy morning. Amy and Mom
pick up the sleep shifts Sunday through Thursday, and Beth fills in on
Friday. Because his memory remains so poor (still not at all
unusual, we hear) and he tends to be disoriented, we make certain that
someone from the immediately family is with him at all times: in his
room, at therapy and during tests. The staff threatens to put us
on “full time,” seems glad to let us take over some of his care and lets
us come and go as we please. There’ve been some interesting folks among
his caregivers---but that’s another story.
This weekend’s biggest bright
spot was the return of Brandon’s custom-sized protective helmet, needed
to protect his skull where the section of bone was temporarily removed
to relieve the pressure in his brain. He's supposed to use the
helmet now at all times while out of bed, and will need to wear it later
when he rides in a car, moves around outside or generally does much (at
least at first) without assistance. We couldn’t think of anyone
anywhere we’d like to make it “Brandon special” more than Delaina
Hofacre, the amazing art teaching at Brea Olinda High who’s known
Brandon since he was little. We sent it her way with a plea to “do
a little something” to make it less white and sterile, and she returned
it an amazing work of art---embellished with all kinds of
Brandon-centric symbols (marching band drum line, computer, his dog
Winnie, his Toyota Matrix and his favorite fast-food spot, Baja Fresh,
along with Dad, Mom and Sisters (all as guiding stars) and everything
tied together with Brandon overseeing it all as Luke Skywalker and the
other Star Wars characters assisting. It truly is an
amazing piece---and makes something that was ugly something to be proud
about. Opening it made us say “Wow.” Opening it made us cry.
Delaina heads a long list of
people who’ve been SO good to us. Our continuing thanks to
everyone for everything they’ve done for Brandon and all of us.
The Hampsons
Brandon Update---October 19,
2004 [Covering
Monday, October 18, 2004]
The infection that plagued
Brandon over the weekend seems to have been brought under control,
though the combination of his "usual" medications plus antibiotics makes
him sleepy. Still he was able to do therapy--walking not once, but
twice during the day--one time as far as the end of the hallway.
These excursions are accomplished with the aid of a walker designed to
best support his far-weaker right side, and with the able assistance of
his guiding "shadow," Sauchuen, a male physical therapist with a gentle
manner whose height (just shy of Brandon's near 6’) makes them a good
match. Watching him work with Brandon (adjusting his stance,
molding his shoulder so the pain subsides, guiding his weaker leg with
his own as they slowly take steps) truly is poetic.
In his non-therapy time, Brandon
continues to find new and unusual ways to amuse himself. With Amy,
he built some structures with a new magnetic block set, while with Beth
he "blew" bubbles through his trach! (Which just goes to show how
adaptable we humans can be!) With both of his sisters, he "danced"
as they watched Billy Elliot--which we all first saw together
four summers ago on a rainy afternoon in Paris.
The days pass and Brandon
slowly--so slowly--grows stronger. We wonder, will he make his "go
home" date? It's only 11 days away.
The Hampson Family
Brandon Update---October 19,
2004
Four months ago this week
Brandon graduated from high school, full of the pride and promise due
someone who'd faced challenges and overcome them.
Being born hearing impaired made
his growing up more complicated than it otherwise would have been.
Because we didn't realize he had a problem until he was more than three,
he missed that great window of language-learning opportunity that comes
before this time, and catching up took many years. As a little
boy, his limited vocabulary kept him from learning to sing songs or
recite nursery rhymes or even understand stories very well. He
didn't string words into sentences until he was nearly six, didn't learn
to read until the middle of second grade and still was getting words out
of order as late as grade five. Adding vocabulary always was done
painstakingly, one word at a time, and writing was particularly
difficult. Making up for time and opportunity lost kept him behind
where he would have been, but he never complained and always worked
hard.
Sometimes being different also
meant being left out, but he handled that well too. He was kind
and polite to everyone, and though he had few close friends, he got
along well and gradually earned the respect of his peers. By
junior high he'd grown academically, developed a love of volunteering,
found a great fondness for playing music, discovered a sport just right
for him (karate) and was on his way to becoming a fine young man. Though
his freshman year in high school was marked by many hardships, the next
three years were happy and successful---times when playing in the
marching band, building and running the school website, socializing more
with friends, being selected for NHS, passing some AP exams and earning
several honors in his senior year made him feel like he'd come far and
done well...which he had.
On the day of his graduation, he
marched down the grassy aisle to accept his diploma with confidence in
his step, and reached out to take it with a huge happy smile on his
face. Like his sisters before him, he accepted his diploma from
Mom, who's always found these times to be among her very best spent as a
school board member. Unlike his sisters, though, he was encouraged
to stretch out his hand and pose for a picture before getting that
well-deserved motherly hug. That photo, so filled with the joy of
a job well done, is one of our most priceless possessions.
Today, Brandon struggles with a
new kind of challenge, but he faces it with many of the same attitudes
and aptitudes he's used to overcome problems in the past. Though
it cost him some struggle, today he walked nearly 60 feet, and did so
not only with less assistance than ever before, but also while
speaking---which means that he was moving entirely without added oxygen
and that the "speech plug" was engaged in his trach---both of which add
to the difficulty. This entire exercise was made much more
poignant because it was shared with his wonderful friend Sue Ann, the
teacher who worked with him on his speech for his entire preschool to
graduation career. Today also was notable for a visit with yet
another pet therapist, Ananda the reluctant German Shepherd, and for
some good fun had this afternoon with Amy and a cute but silly stuffed
critter (the BOHS Rally Cat) brought by another special friend and
former website working buddy, BOHS Vice Principal Ben Rich.
The Hampsons
Brandon Update---October 21,
2004
Brandon's problem right shoulder
was taped this morning, and for the first time, he hasn't needed a pain
shot all day. We notice that the muscle which seemed to melt away
from the right side of his body after the bleeding and swelling of Sept.
12 is coming back--so much so that his right arm (at least below the
shoulder) now once again looks very much like the left. How
amazing our powers of recuperation can be!
Today he talked with the speech
valve for nearly two hours (AM plus PM sessions), doing exercises and
making calls to several people to say a few words. He pushed his
wheelchair quite a few feet down the hall (that is he walked behind it,
propelling it) and walked in his walker down to the end of the hall and
around the bend.
Such exertions wear him out, and
he's slept a great deal this afternoon. He also has had a longer
than usual down-in-the dumps time, whether the result of drugs,
radiation or just plain being tired.
Given all he's been through,
he's entitled.
The Hampsons
Brandon Update---October 22,
2004
October 21 A Slice
of Brandon’s Life
12:01 a.m. Wide awake.
(Hospitals are hard to sleep in.) Tylenol administered.
Belatedly changed into sleepwear (arm was too sore to do it earlier) and
bed fastidiously re-made by Olek, the Russian emigre clinical
assistant (and aspiring screenwriter) with very strict ideas on just how
these things should be done.
1 a.m. Respiratory
therapy. (Inhalation device periodically attached to tracheostomy
to add moisture to lungs. Even noisier than the trach’s already
loud sound, but seems to help breathing.)
2 a.m. Blood
pressure/temperature check.
2:10-5:59 a.m. Mom finally
passes out. Comings and goings unrecorded.
6 a.m. Brandon attempts to
begin the day. Persuaded to “rest a while longer.”
7 a.m. Brandon’s day
starts with a bath, after which he gets dressed, has his hair washed and
gets a shave, all without leaving bed. (Mom actually has gotten
rather good at the shaving part, as it was either this or going for that
“Lincoln look.”) A few minutes of TV time while Mom attempts to
become presentable.
8 a.m. Shot for shoulder pain.
(Thankfully becoming far less needed/frequent.)
8:10-9 a.m. Room tidied,
roll-away stowed, supplies stocked for the day. Shift change
brings the new crew in for debriefing and updates. Blood
pressure/temperature check. Daily therapy schedule arrives.
9:15 a.m. Visit from Paula, the
upstairs speech therapist Brandon first worked with. We miss her
(or at least those of us who remember working with her do), and it’s
nice to see her again.
9:30 a.m. Our favorite
physical therapist, Sauchuen, works on arm and leg stretches and other
flexibility and strength-building exercises. Brandon moves to a
“sitting up at the edge of the bed” position and then to a standing
position, both without assistance for the very first time. Walks
about 50 feet without the walker or wheelchair, but with only Sauchuen
to guide and occasionally support him, for the first time as well.
10:10 a.m. Anti-swelling
medication administered.
10:15 a.m. Speech therapy
with Jennifer. The speech plug (actually called a Passy-Muir Valve
and distributed worldwide by an Irvine company) is inserted into
Brandon’s trach and he’s withdrawn from oxygen at the same time.
This week’s aim is to build up time and tolerance to this, often while
he’s also stretching, walking, sitting up in a chair, etc. A great
deal of coughing generally ensues when it’s put in, but then he slowly
grows accustomed to it and exercises can begin. He goes through
his paces, doing swallowing and throat-strengthening exercises and
saying (in a voice that sounds much, but not exactly, like his own) lots
of “ahhs” and “eeees,” reciting the alphabet, counting to 20, etc.,
before having some “free” time for conversation or telephone calls. We
learn that he’ll have another “mini” swallow test tomorrow and have our
fingers crossed for positive results. If he doesn’t pass, it
probably will mean bringing him home with the trach and feeding tube,
something that sounds pretty frightening.
10:25 a.m. Dr. Meyer, head
of the rehab unit, drops in to observe his speech session.
11 a.m. Anti-nausea drug
administered.
11:05 a.m. Occupational therapy
with Felice, today checking visual and cognitive abilities.
Brandon demonstrates that he can read the time on the wall clock.
To our surprise, he also can read standard-sized playing cards, and
plays Kings in the Corner well. (Vision loss has been a real problem in
this, and we’ve been hesitant to test too much what he can and can’t see
because it seems to scare us all.) He’s also using his right hand
well as he plays cards, and wrote a bit with it for the first time last
night.
11:20 a.m. Dr. Feldman, an
infectious diseases specialist (and one of the staff members we’ve known
longest) checks in to say Brandon’s blood cultures (taken due to last
weekend’s temperature spike) thus far remain negative and his
temperature appears consistently normal. One more day on antibiotics and
he should be clear of infection.
11:30 a.m. Yet more drugs
administered. Speech therapist returns to remove trach valve.
11:40 a.m. Tracy, our daily
escort to the lower level, arrives with Brandon’s transportation, a
swift-moving gurney. The inevitable shuffle for his portable trach
system ensues. (Someone always moves it! Today we took
action and hid it so tomorrow we’ll know where it is!!) A new one
is finally found and we begin the long trek downstairs.
12:15 Brandon (and for the
first time, Mom and Amy) enter the radiation treatment room. The
very nice people there (and this is somewhere where nice people really
are good to have) kindly show us how everything works. They point out
the very special platform Brandon is about to be lifted on and the
machine that will do the work, and show us that BOTH move in intricate
ways, triangulating with lasers (and the mask that was molded especially
for him) to precisely focus the energy. All of us but Brandon
exit, the technicians go to the control room and soon the
radiation hazard light flashes. A few moments later, he’s rolled out
again. Brandon comes downstairs without his hearing aids or his
glasses and generally gets sleepy on the way. He usually dozes
through all of this, and never once has seemed concerned.
12:25 p.m. Dr. Hakimian, our
specialist in this part of the hospital, briefly meets with us.
12:40 p.m. Back to the room and
transferred from gurney to bed (a four-person job).
12:45-1:30 p.m. Nap time
(Radiation is tiring.)
1:30 p.m. Breathing treatment.
Meanwhile, Mom disappears downstairs to discretely secure a bit of food
for herself and Amy. (We usually take turns eating in a corner of
Brandon’s room outside his range of vision. It’s just not cool to
eat or drink in front of someone who can’t.) Mom eats first and
Amy queues up Brandon’s movie choice for the day on the computer: The
Wizard of Oz.
1:35 p.m. New feeding
method begins. Instead of the continuous slow drip that takes
nearly 24 hours to pipe in 1,500 calories, now Brandon will get “three
meals” a day, with larger amounts of Nestle Crucial given in shorter
time windows, all with the intent of preparing his stomach to eat real
meals again---hopefully in the not-too-far-distant future.
1:45 Mail delivery, with
three cards for the patient in Room 7924. If the volunteer who
delivers the mail is correct, this again means Brandon received the most
cards in the hospital today. Thanks to all who’ve made his room so
amazingly full of love.
2 p.m. Watching Oz
and exercising hands with a Nerf ball.
2:10 p.m. Staff member
brings in an announcement of a meeting Wednesday to give patients who’re
soon to go home and their families information on ongoing needs and
securing continuing rehab treatment closer to their communities.
2:30 p.m. Dr. Pikul (who
performed the second, emergency surgery on Brandon) and his assistant,
Gordon, drop by for a visit.
2:40 p.m. Speech with
Jennifer again. Speech plug re-inserted. Brandon enjoys a
“Lemon Pop,” a cotton swab dipped in juice that’s been his only treat
since September 10. (When this boy finally can eat, we’re going to
buy him the biggest vat of ice cream and the largest plate of fettuccini
alfredo anyone's ever seen.)
2:50 p.m. Brandon
chats with Amy and does tongue and neck exercises to strengthen his
swallow.
3 p.m. Blood
pressure/temperature check.
3:30 Physical therapy
again. Brandon does some stretches and stands up again by himself, but
he feels nauseated from the higher-dose feeding, so no walking takes
place. Nap time again.
4:15. Dr. Black drops in
for a visit.
4:20 Respiratory therapy.
Still not feeling well and sleeping most of the time.
6 p.m. Dad, Grandma and
Uncle Richard arrive. Feeling well enough to smile, “talk” and
open more cards.
7 p.m. While all but Bran
and Mom go downstairs to eat, we attempt to find something to watch on
TV. Just like at home, it’s bleak. Decide instead to listen
to music, which always seems to make everything better. Modern
orchestral is a big favorite, and today it’s John Williams Back to
the Future. Hooked up to his headphones, for a time Brandon
“conducts,” while Amy clowns around, dancing and eventually getting her
brother to imitate her.
7:15 p.m. Trach fitting
and neckband replaced by nurse and Mom.
7:30 Shift change, new
people in and everything buzzing again.
8:00 Blood
pressure/temperature check.
8- 8:30 p.m. Amy’s on duty
for the night, so everyone else gradually departs.
Another ring gets pulled off the
count-down-to-going-home chain. If predictions hold true, only
eight days remain.
The Hampsons
Brandon Update---October 25,
2004 Six Weeks at Cedars-Sinai; Mom and Dad’s
29th Wedding Anniversary
It lies is West Los Angeles,
right next to the Beverly Center, and its main entrance opens just steps
from the spot where George Burns Road meets Gracie Allen Drive.
From the heights of its main building (the Max Factor Family Tower), the
view west takes in the Steven Spielberg Pediatric Pavilion, the office
and entertainment towers of Westwood and Century City and the white
walls of the Getty Center, high on a hilltop the sun sets behind.
Downstairs, in the main plaza,
and across the street, in the volunteer building, names we all recognize
are etched in gold: Kirk Douglas, Debbie Renolds, Carol(s) Burnett
and Channing, Sally Field, Ann-Margret, Angela Lansbury, Whoopi
Goldberg, Charlton Heston, Liza Minnelli, Shirley MacLaine and Mary
Tyler Moore (among others), along with the late Bob Hope, Bing Crosby,
Lana Turner, Rita Hayworth, Gene Kelly, Jack Lemmon, Jimmy Stewart,
Donald O’Connor and Peter Ustinov. “Cedars” has long been the
place where celebrities go to give birth, have surgery and eventually
die. The children of Jodie Foster, Michael Jackson and Warren
Beatty/Annette Bening all were born here, Elizabeth Taylor, Leonardo
DiCaprio, Kim Basinger and Larry Hagman are among many who’ve had
surgery here, and Frank Sinatra, Lucille Ball, Sammy Davis Jr., Danny
Thomas, Danny Kaye, Gilda Radner and River Phoenix all died here.
The late Rick James and Barry White both have been through the same
rehab unit Brandon is in, White in the very room Brandon now occupies.
During our stay here, the hospital rumor mill has revealed that Tom
Jones and O.J. Simpson lawyer Johnny Cochran have been patients, both on
the eighth floor where Brandon went first after ICU. Obviously, we
didn’t settle on Cedars-Sinai because of its celebrity connections, but
it’s still somehow comforting to know that people who have the money and
influence to go anywhere they choose decide to trust their care to the
place we’ve also come.
Making a second home somewhere
for so long means learning a little about it, and this is what we know:
Like many hospitals everywhere, Cedars is a religious-based institution,
and its roots lie in the Jewish faith. High on its central tower,
a Star of David proudly proclaims its heritage, while inside, the
portals to patient rooms all bear a metal mazuzzah (a blessing to all
who enter), one elevator automatically stops at every floor on the
Jewish sabbath (to allow the Orthodox, who so honor the instruction not
to work on this day of rest that they can't push a button) and the
cafeteria always serves several kosher selections. Growing up in
the LA area, we remember a little about the hospital’s origins,
recalling the old Cedars of Lebanon and Mt. Sinai Hospitals, although we
didn’t actually remember when (in the early 1970’s) we first started
hearing about the brand new Cedars-Sinai on this current site.
Cedars is a place of privilege,
and also a melting pot. Its interpreting staff speaks 100
languages, and we’ve probably heard most of them in its halls.
Among the hundreds of staff members who’ve now assisted Brandon in some
way are people who’ve came to Los Angeles from all over the globe.
By their names and their accents we recognize Russia, Armenia, “Persia”
(since none ever indicates Iran or Iraq), China, India, the Philippines,
various countries in Africa, Latin America and Canada. Cedars has its
quirks, both odd and impressive. When there are too many cars
(which happens often), it’s necessary to valet park. It has the
cleanest carpets anywhere. (They shampoo spots out every night.)
It has a piece of art (usually a numbered print) in every available
space, most only about six feet apart. It has a pretty amazing
cafeteria and the best hospital gift shop we’ve ever seen. Its
volunteer force (a cadre of sweet senior citizens) consists mainly of
expertly coiffed elderly ladies, a good number of whom have absolutely
no lines in their faces. It boasts a staff that shares skill and
patience and love for their work, and they’ve been there for us, with
hope and hugs, through some of the most difficult days of our lives.
Brandon had a good weekend.
He walked farther and talked longer (wearing the speech valve an
impressive seven hours on Saturday), had some visitors (the
ever-faithful Ben Rich and Laurel Rabjohns, who brought a shirt and hat
sent along to one of their best customers by the people at Baja Fresh!),
and spent a good deal of time trying out the new-found agility in his
healing right hand: conducting music while connected to headphones,
playing cards, trying out his drumsticks again, doing the hand jive with
Amy, buttoning his shirt buttons and working on moving quarters and
nickels back and forth between hands (an occupational therapy exercise)
with Beth.
His release date originally was
set for October 29, and while we’re eager to have him home, we think
lingering a few more days might be in his best interest, and so have
shared this with staff. We’ll need to continue coming to Cedars on
a Monday-Friday basis until his course of radiation is over (not till
November 19) AND will still need to get speech and physical therapy in
somewhere each day. The time constraint of getting all this done
as commuters (given the tiredness he often feels) is a worry. We
know his therapists and they work SO well with him...having it all there
at our fingertips is terribly easy, but he’s also awfully homesick,
which makes this a tough decision. Particularly, if there’s any hope
that he can get the trach off/stomach tube out and begin eating again
before he leaves the hospital, we would like to give him a few more days
to do this, as it would make the hospital-to-home transition much safer,
easier, comfortable and more meaningful for us all. We’re working
hard to get there, but may need just a bit more time.
As always, our deepest thanks
for your continuing kindness and interest in Brandon’s progress.
The Hampsons
Brandon Update---October 26,
2004
First food: 4 spoons of
chocolate pudding (and they went down right away!)! Juice
tomorrow!!
First Feat: Walked (in a walker)
ALL the way to the east end of the hallway (and kept his pulse ox in the
very high 90s while doing it!)
First Stairs: 4 in the Rehab Gym
Watched Close Encounters of
the Third Kind. Provided PC expertise (twice!) while the
female Hampsons (Amy excluded) couldn't figure out things on his new
laptop. (Some things never change!)
The Hampsons
Brandon
Update---October 28, 2004
Progress is more welcome than
patience, but the latter often is safer.
Brandon enjoyed his chocolate
pudding and seemed to swallow it well, but an updated exam by the EMT
"swallow expert" shows he still lacks sufficient sensitivity in his
throat to tell if food has "gone down the wrong way" --- a serious
threat for pneumonia. Although we were thrilled that he might be
able to return now to eating (and disappointed this is not yet to be) we
were VERY relieved to hear some of the doctor's words: "dramatic
improvement," " great swallow" and "vocal chord definitely twitching,"
as this was the same man whose earlier assessment of Brandon's condition
had Mom pacing the hallways for hours.
Another exam was recommended
three weeks from now, which means Brandon will be released from the
hospital and come home with his trach and feeding tube. Amy and
Mom are busily learning how to deal with these, and we all are crossing
our fingers and saying our prayers that Brandon will be able to at least
sample some pumpkin puree this Thanksgiving.
The Hampsons
Brandon
Update---October 28, 2004 – Wednesday Night’s Report
The evening news is on and,
despite the blaring barbs of competing politicians, Brandon is
peacefully sleeping. With the hiss of the oxygen hose at long last
thankfully silent (as he begins adjusting to longer periods without it)
the sound of soft snoring instead fills up our small space.
Today Brandon got his last IV
out, walked three times (twice assisted by Amy) and wore the trach
speaking valve for more than 10 hours. Amy and Mom continued
learning basic nursing, practicing in the room and attending a meeting
for families of patients about to be released. We have a long list
of things to get and do, and thankfully still a few days to set
everything in place.
The past two weeks have been
doubly busy at home, as extra work has been needed to facilitate the
coming transition. We’d been in the middle of redecorating when
Brandon’s illness was diagnosed, with wainscoating half in, painting
partially done and carpeting cut up all around it. Once the most
intense weeks of our journey passed, we turned some attention back to
getting it done. Through luck and the help of some very kind
folks, we’ve been able to get the painting done and the new carpet laid,
and gradually are in the process of getting everything back in its place
and somewhat comfortable again. Having been gone and separated so
long, we all look forward to coming home.
The Hampsons
Brandon
Update---October 29, 2004 - Coming Home...and Wondering Why
As we begin the final days of
his hospital stay, preparations speed up to make Brandon (and us) as
independent as possible. Home health equipment is ordered,
outpatient therapy scheduled, several new procedures are pending to
relieve the pain from his aching shoulder and a new test to see whether
he can tolerate having the trach removed is in progress. We were
surprised to learn that leaving it in may not be as necessary as we
earlier were led to believe. Since his swallow has strengthened
and his blood-oxygen levels remain very high for long periods when he’s
not on oxygen, the pulmonologist says he no longer needs it for
breathing. His speech therapist says the weight of it may also be
pulling down his throat, restricting his normal range of neck motion and
otherwise hampering healing---and that taking it out might actually
hasten recovery. This would be wonderful, as it’s still not
believed he should try swallowing food, which is a far trickier, riskier
activity. If he comes home without the trach, that will feel far
safer and easier for Amy and Mom, as all they will have to gain
proficiency in is tube feeding. If the trach comes off sooner than
later, perhaps improvement in his swallow will mean that, too, won’t go
on quite as long, and he’ll be on his way to eating real food soon
again.
Getting ready for Brandon to
come home is a major milestone for all of us, and we’re thankful for the
good luck and even “miracles” we have experienced over the past eight
weeks. When you’re in the business of asking God’s grace, it seems
inappropriate also to question His wisdom. Still, when we see all
that Brandon goes through, it’s hard not to wonder why so many hardships
should happen to him. In all our experience, we’ve rarely
encountered anyone who possesses a more innately kind spirit than
Brandon, or someone who so deeply simply wants “to help people,” as he
told Dr. Black on that warm Thursday afternoon before his first surgery.
We don’t know why, and will
never know, but we do know that our son is coming home, and that he and
we will continue to try our best to live up to Brandon’s imperative “to
help people.” God help every one of us reach that simple
goal.
As another week ends, we need to
express our continuing gratitude for the support of wonderful people.
The expressions of caring and concern which have come to us, and which
we know have been made on our behalf, are a great comfort to us all.
Thank you for keeping us in your thoughts and prayers.
The Hampsons
Brandon
Update---November 1, 2004
Brandon was a busy young man
over the weekend, getting things in order for a special transition and
celebrating Halloween in some style. His trach came off early
Saturday morning, sliding out so quickly and easily, and leaving such a
small residual hole that it seemed almost impossible this strange device
had been in his throat for so many weeks. It wasn’t even necessary
to put in any stitches, as the hole is expected to heal itself in just a
few days. Thankfully, he has no problem speaking, although his voice is
a bit weaker and hoarser. In therapy, he did more assisted walking
and practiced some “life skills,” then got his first free pass to leave
his room and spent time exploring the hospital with Mom and Beth.
He had an unusual Saturday night, as his healing right arm experienced
significant spasms, which kept him awake many hours.
For diversions, he played Nerf
basketball, aced history trivia questions (in a competition that
eventually involved several staff members!) and had a great Halloween,
with creepy music (and dancing!), funny movies (Young Frankenstein),
a carved Jack-o-lantern (a la Amy) and everyone (Mom, his sisters
and even Dad in costume. Dad NEVER dresses up for Halloween, so his chef
hat, ill-fitted apron and willingness to ham it up were a real treat.)
Brandon wore an Indiana Jones hat and a plastic snake around his neck,
and even had occupational therapy in character. He was thrilled to have
early evening guests from Brea (Thank you SO much Scott and Laurel
Rabjohns) who turned trick-or-treating around by bringing Brandon
goodies. One last surprise for the night was the hospital’s volunteer
harpist, who wheeled her instrument right into his room and played
several beautiful selections. Brandon absolutely LOVES music, so
he was just thrilled.
At today’s end Brandon will have
been in the hospital 53 days. At a little after noon tomorrow,
he’ll finally be headed home. We have never seen him more excited.
The Hampsons
Brandon
Update---November 3, 2004
There's no place like home.
The staff at Cedars-Sinai rehab
seemed sad to see Brandon go, but he said his thank yous and goodbyes,
got a welcome look at the outside world on the way home, and arrived in
Brea tired but in great spirits yesterday afternoon around 2. As
we crested Stone Canyon's cul-de-sac and our house came into view, an
amazing sight greeted us. The front yard was COVERED with yellow
ribbons and a big sign reading "Welcome Home, Brandon." How
wonderful people are!
He had his first visitors
shortly afterwards (and later too), watched election coverage well into
the evening and had a great night's sleep. So far his "nurses"
seem to be doing okay, even if four hands sometimes are needed where two
generally would be sufficient. The poor boy does not suffer from
lack of attention!
This morning we begin the
commute back to Cedars for outpatient therapy, and the need to get on
the road precludes any more updating. As time permits, we'll try
to write more.
The Hampsons
|
