Brandon Update---January 12, 2005

Four months out from the emergency brain surgery that removed a piece of his skull to save his life, and three weeks from our last update, Brandon continues to make remarkable progress.

When last we wrote, he was walking a bit, but still rather slowly and often with his head angled down to avoid recurring headaches.  Although he wasn’t using it to eat, he still had the feeding tube in his stomach and was anxious to get it out.  He also hadn’t had an MRI since he’d finished radiation to find out how well it had worked.

The feeding tube continued to be an irritant and was removed (rather dramatically!) on our second trip to have it checked out.  To our surprise, the young emergency room doctor just told Brandon to brace himself.  He tugged, a plastic contraption the size of a 50-cent piece popped out and that was that!  It came out just a few days before Christmas, and was a great early gift for Brandon, as the area just outside the tube had become very inflamed with leaking stomach acid...tough stuff on tender skin. 

Having this last vestige of his once-many tubes and lines removed was a big morale boost and also enabled him to sleep and move around far more comfortably.  He began exercising harder when he didn’t have to worry about the tube, adding weight and repetitions, stretching higher, walking farther and farther and experimenting with cooler “moves” while dancing with his sisters.

The holidays were a combination of gratitude and anxiety, with all of us so thrilled he was there to enjoy them, trying hard to remember to do everything (and more) to make them as wonderful as they could be, striving to savor every moment and not think too far into the future.  We got him out of the house more and more during these days, to pick out some special gifts for others, to deliver some to the less fortunate, to see the holiday lights, to attend a choral program at Disney Hall, a dramatic concert by the TransSiberian Orchestra, and (with some great folks from Dad’s work) a Disney on Ice show, both at the Anaheim Pond.  We wrapped and baked, looked at lots of holiday movies and delighted in his growing strength and always upbeat mood.  The day after New Year’s, we even managed to get up to Pasadena to see some of the Rose Parade floats, by far his longest walk yet.

Late in December, we traveled to the Imaging Center at Cedars, where his journey began September 9.  Again he was rolled into the huge MRI machine and it made its odd series of bangs and beeps as it scanned his brain.  All of us had come along for moral support, knowing there would be no “read” of the test till a later date.  As always, when a procedure is over, we try to add something fun to the journey so it isn’t just about doctors and hospitals.  By the time we’d almost reached home, the headache that results from the dye that's injected had faded, and we all celebrated at our favorite Mexican restaurant.

In an effort to be as well armed in this battle as possible, we’ve continued to devote as much time as we can steal to reading piles of books and scores of Internet articles.  We know so much, yet so little, and have learned to be both open-minded and humble about judging what might and might not work.  A growing cadre of top academic minds embraces a comprehensive approach to brain tumor treatment, taking everything medicine can offer and then adding alternative approaches like special diets, nutritional and herbal supplements, guided imagery and prayer.

We’ve come a long way in our ability to embrace all this, and continue to add new features to Brandon’s care on an ongoing basis.  Last week we visited Dr. Evan Ross, who just happens to be the very first Oriental Medicine specialist ever hired as a staff doctor at Cedars-Sinai.  We learned of him first through the help of a friend, and read a great newspaper article about his remarkable story: losing an eye to cancer at two, learning he had the most virulent type of brain cancer at 22, surviving it and then attending school to specialize in the methods he believes saved his life.  We  look forward to working with him.

While in his office, we unexpectedly had our first “look” at the results of Brandon’s most recent MRI, and are thrilled to say the tumor which started out the size of a golf ball is now instead the size of a grape.  We never knew exactly how much shrinkage was expected through radiation, or even if such predictions are made, but have to think smaller is always better.  Dr. Ross also said there appears to have been no enlargement of the tumor since radiation ended (as they did another MRI just before), which he took to be very encouraging.

This afternoon marks our first post-hospital visit with members of Dr. Black’s team.  We've asked them to consider Brandon as a candidate for their cutting-edge research in immunotherapy and are anxious to hear their response.  They, too, will no doubt weigh in on the results of the MRI, will outline their plan for further treatment and let us know when they think the missing “bone flap” should be returned to Brandon’s skull.  This, of course, means a third (but we think, far less invasive) brain surgery, but Brandon is eager to get it back and feel like he doesn’t have to be so careful about his head anymore.  The missing piece is rather significant, about six or seven inches around its outer edge, making this whole area as vulnerable as a baby’s soft spot or everyone else’s temples.  When we go over bumps in the car, he can actually feel his brain move!

As always, our continued thanks to all those who have kept Brandon in their thoughts and prayers.  We are grateful every day for your caring.  

The Hampsons

Brandon Update---January 13, 2005

“Unusual,” “remarkable” and even “astonishing” were the words Brandon’s doctors used yesterday to describe the shrinkage of his tumor, as shown by the latest MRI.  People not prone to overstatement (at least in our judgment), Dr. Black and his associates seemed genuinely excited to share such positive results with the five of us there to hear the report.

Put through his paces in an office assessment to determine his mental and physical healing, Brandon also did well on cognitive tests and with tasks designed to show the strength of his still-healing right side.  All in all, he was pronounced remarkably able in every area, a conclusion that (not surprisingly) thrilled us. 

Given the sure progress he’s made with the course of treatment he’s been through, it’s been recommended that he remain on the path he’s begun in hopes the tumor will continue to subside.  Having already received what’s usually considered the maximum lifetime dosage of one type of radiation (along with concurrent drug therapy), he now will continue with the drug therapy alone.  The drug prescribed comes in pill form and is taken just five days a month.  It’s designed expressly for the type of tumor he has and is believed to penetrate the “blood brain barrier” far better than earlier remedies.  He never has shown any observable adverse reaction to it, something we’re all grateful for. 

We had been hopeful (perhaps illogically so, given that each case is different) that the doctors might say Brandon is ready to become part of their cutting-edge immunotherapy program, but for now this isn’t the case.  Because his tumor has responded so well to conventional treatment, they believe sticking with this “safer” solution remains his wisest choice. Becoming part of the vaccine study would mean another invasive brain surgery to collect tumor cells, the same kind of surgery that led to such devastating bleeding last time.  Because the tumor is now so much smaller, harvesting enough cells to make the vaccine also might be difficult.  Foregoing the immunotherapy option now doesn’t mean that it might not be used in the future, should the need occur.    

Dr. Black’s crew gave us a window of time when the missing piece of Brandon’s skull (or an acrylic facsimile) will be replaced, some time the week of February 14.  This surgery doesn’t actually involve going into the brain, and so is considered far less dangerous than either of the two procedures he’s already had.  Still, it’s a surgical procedure and entails all that that involves, including several more days in the hospital. 

Knowing what we do of tumors, we were deeply pleased to receive such a wonderful report, but continue to be watchful and wary, as all must be when dealing with any “aggressive,” incurable disease.  In an effort always to do all we can, we also stopped by the office of Cedar’s Oriental Medicine specialist to pick up Brandon’s first batch of herbs and tinctures (part of a concurrent effort to “make an inhospitable atmosphere for the tumor’s re-growth”).  Then it was time to celebrate (with pizza and pasta!) at a tiny Italian restaurant across from the hospital.

Next week, Brandon, his sisters and mom will be off to a seminar that focuses on training patients to help heal themselves by identifying their strengths and stresses and enhancing their immune responses.  While we once might have considered this akin to believing in flying saucers and Big Foot, we’ve learned enough to know that people far wiser than we’ll ever be have clear evidence the power of the mind often makes all the difference in cases like this.  “Live and learn, keep an open mind and stay humble about what you don’t know” has become our new philosophy. 

What we do know is that many people have kept Brandon in their thoughts and prayers all along this difficult journey, asking always for his improvement.  What we do know is that his condition has dramatically improved.  For everyone who helped in making it so, we are deeply grateful.    

Two final notes: Gary found time to scan in several new Brandon and family photos, which can be found on this website.  We’ll be taking a break from updates while we’re away, but will check in again after 1/21.  And, as always, to those who follow these messages, take care (and antioxidants!).       

The Hampsons

Brandon Update---February 2, 2005

Nearly three weeks since our last update, and Brandon continues to make remarkable progress.  Since last we wrote, he’s spent a week with Beth, Amy and Mom “on retreat” practicing meditation and visual imagery (along with meeting experts and others on his same journey, getting in touch with his stresses, and enjoying the gorgeous Montecito sunshine!), visited his hematologist (who concurred that the tumor’s shrinkage is very positive, adding the new word “miraculous”), and seen an optometrist who specializes in brain injury and its rehab to ascertain just what’s gone wrong with his vision. 

We spent three hours Saturday in the office of the new optometrist, who gave him a full battery of exams (some twice) and came up perplexed as to why he can’t see better.  The “stroke-like” effects of the brain swelling that necessitated his second surgery have left him with a visual field deficit in the upper right quadrant of his right eye (not fixable, but small enough not to be of major concern) and an unknown something seems to have compromised his color perception, particularly for green.  He thinks he sees it when we go walking,  but could not at all pass the exam, which required him to arrange color dots in combined shades of blue, green and pink/purple from most to least intense.  By far our greatest concerns, however, are his distance and close-up vision, which now keep him from seeing anything clearly or being able to read anything other than very large print.  The good news is that the doctor couldn’t initially find any physical reason why the corrections she was trying didn’t work.  The bad news is, they didn’t.  She seemed very knowledgeable, was exceptionally kind, and expressed a commitment to get together with his doctors, go over his  records and piece together this puzzle, passing us on to other experts if and when needed.  We hold out great hope that’s just what she’ll do.

Brandon continues to exercise faithfully, walking more and lifting heavier weights.  He’s trying harder to develop a more normal gait, working to keep his right leg straight and his neck and head more upright, all the while moving ahead.  Learning to “re-walk” doesn’t seem quite as natural as it was the first time around...but he’s definitely making progress.  He eats everything placed before him, even if it’s far more than before all about vegetables, fish and whole grains.  He takes and tolerates all his supplements well, sleeps deeply but less than when he first came home, enjoys relatively busy days and keeps the most amazing attitude on earth.  We’ve always been proud of the way he’s handled his challenges in life, and in this, he’s made us far prouder than we’ve ever been before. 

As he grows stronger, he reaches out for bits of his lost life.  He brings in the mail (and last week, while Mom was on the phone and not noticing) even the trash cans!  He reads the headlines of the paper and Newsweek.  He got his e-mail back running and turned his phone back on, but mostly they’re silent, as those he was close to (not unexpectedly) are busy or have moved on.  Being a just-grad who isn’t in college or working is kind of a limbo place.  He doesn’t remember several of the months since he was in high school, and hasn’t had a chance or the strength to start something else, while others his age are off on different paths, trying on new things and putting down new roots.  He doesn’t complain, but we think this must be hard.   

We spend our time trying to learn all we can to work for his full recovery, to ensure that he’s fed, exercised and medicated properly and that his days are as pleasant as possible.  What he probably now needs is something of meaning to do, and the quest for this is more elusive.  

Today we’re off once again to LA to visit Cedars’ Oriental Medicine Specialist, mainly for refills and also advice.  We enjoy this guy, as he’s only a decade or so older than Brandon, but has traveled his same path with success and gone on to help others with what he’s learned.  Plus, practicing Chinese herbal medicine and acupuncture on the staff of one of the nation’s premiere hospitals...quite a coup!  We also now have a date for the reconstructive surgery which will once again make his skull whole, as he’s had a baseball-sized missing piece (beneath his mop of hair!) on the left side of his forehead since his second surgery.  The piece of bone they removed has been on ice, or may instead be supplanted by an acrylic model, but the time and place are Feb.15 at Cedars.

We’re told that this isn’t a  complex surgery, as it doesn’t go into the brain, and he’s expected to be in the hospital only a few days.  Still, we’re trying to fatten him up (knowing Brandon, that’s amusing...) and get him as strong as he can be.  All that lying around takes a whole lot out of anyone! 

We continue to be grateful to all those who’ve followed Brandon’s journey and sent him their strength.  He’s a fine young man wrestling with a difficult disease, and appreciates (as do all we) everything that’s been done for him.

 Our best to each of you.

The Hampsons

Brandon Update---February 15, 2005  (written by school district administrative assistant Sue Nowers)

Brandon has just come out of surgery to replace the missing piece of his skull (an acrylic replacement) and is doing well.  The family will be able to see him soon.  He will probably be in the hospital a couple of days, but it's anticipated his recovery will be quick!

Sue

Brandon Update---February 16, 2005 - Post-Surgery 3

Brandon was transferred to ICU at just after 5 this afternoon, and spent the night there with Beth as his roommate.  (Not the easiest thing for her, keeping watch/grabbing a few moments sleep, sitting up in a chair...)  Even in Recovery, he already looked good, acted like himself and said things that made sense---always good signs after brain surgery.  His head was wrapped around in bandages and he had some pain, relieved by Vicodin and that wonderful “mini-massage” the therapist from St. Joseph’s taught us.  He drank a lot of water and some apple juice, ate a bit of Jell-O and an entire bowl of chicken broth. 

The surgery took longer than expected, nearly 3 ½ hours, but his doctor said all went well.  They sent for the bone that had been removed in September and frozen since then in a “bone bank,” but apparently weren’t satisfied with the look of it, so instead went with an acrylic model.  This was attached to the rest of his skull with titanium plates fastened by  titanium screws (which should make going through airport security interesting).  Having lived without the “bone flap” for so long, the softer tissues on the  side of his head adjusted to its loss.  The doctor indicated there was some atrophy of the “chewing muscles,” and that his face might not look quite as symmetrical as it once did.  Given all that he’s been through, this seems like a minor adjustment.  He’s never been the least bit vain, and with that great head of hair he usually sports, folks probably won’t even notice.

Perhaps the sweetest moments of an otherwise anxious day came both times we saw Brandon’s lead surgeon, which for this operation again was the nice young man who shares being hearing impaired with his patient.  He hadn’t seen Brandon in several months before visiting him just prior to surgery, and clearly was delighted to find him so strong and alert.   He was the one whose swift work in removing the piece from Brandon’s skull kept him with us, and he admitted he was glad he had the chance to restore that loss---calling the experience “coming full circle.”  The day’s first best moment happened early on, as we walked the two brief blocks from our hotel to the hospital in the quiet before city sunrise.  Yet again, just as he did before (but doesn’t remember), and right at the very same spot, Brandon and his sister began to march and dance and sing.  Surely if attitude has anything to do with how all this turns out, he has that one hands down.          

A few days past marked the five-month mark in this strange new experience we’ve found ourselves in.  More often than not, it’s hard to remember how life was before.  Brandon remembers nothing of his prior surgeries and little of his long hospital stay, so all that comes now is new to him...yet eerily familiar to us.  We sit in the waiting room, ride the elevator and wander down to the cafeteria, everywhere encountering staff members who smile when they see us and ask how Brandon is doing---an odd but not unwelcome homecoming.      

The Hampsons

Brandon Update---February 18, 2005     

Brandon arrived home from the hospital not long ago, looking like he’s gone several rounds with the Contender, but feeling pretty strong, all things considered.  Amazingly, he’s up, dressed and walking around, having already enjoyed a long soak to soothe some cramped muscles.    

Mom has to admit she misses his hair (at least on the one side they cut it!) and cringes a bit when she sees the incisions and staples that hold them together.  Still, it’s easier having been this way before, knowing it all fades and eventually disappears under a mop of brown hair.  If only the problem inside would disappear equally as well, that would be better than all the holidays and birthdays ever.

Coming home this time is so much easier than before.  He was so weak and we knew so little then, and nothing seemed like it ever would be right again.  This time, he’s mostly just as he was when he left, and we know so much more---especially that, though his condition remains a difficult one, others have passed this same way with success.  We aim to do all we can to follow in their footsteps.

As always, our special thanks to everyone who has kept Brandon in their thoughts and prayers.  We feel certain this has made a great difference.     

The Hampsons

Brandon Update---March 2, 2005

Some moments are magic. 

Last Thursday night, Brandon received a special award from the high school PTSA, primarily for his past work with the school webpage and other technology efforts at Brea Olinda High.  He was surprised and touched and grateful for the award, but it’s actually what happened afterward that causes us to smile most.  Inspired by the notion that someone had so valued something he once was able to do, Brandon---who has trouble seeing and hasn’t touched a computer hardly at all for many months---got up very early the next morning, turned the den machine on and printed out a news article.  By the time Mom got up, he was half-way through it, reading aloud and taking a good deal of time to do it...but doing it nonetheless.  All told, it took him 45 minutes to get through a three-page story---but he read it, and was incredibly proud.

Learning that he could, with enough effort, return to the world of reading and technology led to bigger and better things throughout the weekend.  He and Dad made a shopping foray to Best Buy to purchase a larger monitor and a new keyboard.  Just the act of being in the store again together was a big deal, as these two tech guys often “recreated” together over bytes and pieces at places like this (and then ate pizza!)...so Saturday was a return-to- “normalcy” day of the best kind.   Since then, Brandon has continued to ease slowly back into tech, playing some games, surfing the web a bit, and even brainstorming a plan for a class to take over the high school’s now-nonexistent website.  Truly, he feels as though he’s gotten another part of his old self back.           

Two weeks and a day since his last surgery, he’s doing unbelievably well physically, walking around a lot, helping out with a few chores and pitching in to help put his high school scrapbook together.  He had absolutely no swelling or bruising this time, something we attribute to the advisement of our new nutritionist and the supplements she suggested for his post-surgery care.  (His swollen-shut left eye opened up in less than a day once we began her regimen!)  The staples on the left side of his head (which, in Beth’s words, made it look like a “baseball”) came out Monday, and his hair already is starting to grow out again, a little even in the places where radiation passed.  Appearances never have mattered much to him, and with the bone flap restored, he’s mostly just pleased that he actually can lift his head up straight (and even tilt it back!) without discomfort for the first time since all this began.  He hasn’t had a headache in days, and even believes his vision has improved just a bit.

This is particularly welcome news, as the “rehab” optometrist who tried so hard to figure out what was wrong with his thus-far uncorrectable eyesight has come up dry and referred us to yet another doctor.  This time he’ll seen a neuro-opthalmologist, a specialty we confess we didn’t even know existed until a few weeks back.  When Brandon visits him, he’ll become the 25^th doctor who’s played some significant role in his care, quite a change in experience for a young man who hardly ever had been ill before things changed so abruptly for him last September. 

Tomorrow will mark the half-year point since Brandon drove himself to what he thought was a routine eye exam and instead found out there was “something wrong with his brain.”  Three surgeries, 56 days in the hospital, two and a half weeks in ICU, 33 radiation treatments, nearly a month of in-patient rehab, several courses of drug therapy, innumerable tests, countless doctor’s visits and an enormous deal of work just getting back to the “new” normal have filled most of his waking hours since that anxious afternoon.

Ironically enough, he’ll observe this anniversary doing again what he was that day in September, visiting yet another eye doctor to try and figure out why he can’t see better.  Hopefully, the results of this exam will be more positive (and less frightening) than last time’s. 

 To be certain, these have been difficult days, but also times of great learning and gratitude, appreciation and understanding of what matters most...and (hopefully) how best to celebrate it.  We continue working hard to beat back the tumor and create an “inhospitable climate” for its return, and are sincerely grateful for the tremendous outpouring of physical and spiritual help we’ve received all along the way.  Brandon and the whole Hampson family remain deeply grateful for the continued caring of so many.

The Hampsons

Brandon Update---March 4, 2005

Some words are hard to hear.

That always was Brandon’s problem.  Being born with mild-to-moderate sensorineural hearing loss in both ears, he’s always had to work a bit harder than others his age to keep up with what’s going on, whether in the classroom, on the playing field or in everyday conversation.  He’s always missed out on some things, but compensated well by being a visual learner...taking sign language, learning to read lips, becoming an avid computer user and always following closed captions on the TV.  

When he was in fifth grade and first diagnosed as nearsighted, it saddened us that he needed both hearing aids and glasses, but he wore them well, never complained and eventually learned to like contact lenses.  After Mom had laser eye correction, we switched his care from the clinic at Southern California College of Optometry to the optometrist who did her surgery, and he’d been building up a year-by-year record which eventually would have prepared him for the same operation when his eyesight stabilized.  At least then, we figured, he could go through life only needing hearing aids---not glasses or contacts as well. 

Then came September, and everything changed. 

This afternoon, Brandon heard that---barring a miracle---he never will see well again.

We probably shouldn’t be surprised, since he’s struggled with his vision ever since all this began.  Still, we’d held out hope that a bigger and better doctor would be able to find a way to fix it.  Today, the best specialist we could find looked into his eyes and said his optic nerves are significantly and irreversibly atrophied, almost certainly as a result of the very large hemorrhage that necessitated his emergency brain surgery. 

Though he can still see well enough to watch TV and make out printed words with some effort, he no longer can be corrected to any sort of normal level, which almost certainly will significantly compromise his quality of life.  We shudder to think of the things he won’t be able to easily do (and others he won’t be able to do at all), and---for his sake---try not to surrender to the sadness.   

The doctor who examined him was so kind, and knows something of loss himself.  No more than in his mid-30s, by our judgment, he said his wife, who’s also an opthalmologist, is losing her sight and expects to go blind in just a few years.  At least we can take some comfort in the fact that he seems certain Brandon’s vision loss is stable enough not to worsen much.  He spent the appointment glancing over the many charts and MRIs that arrived ahead of us, talking about the extent of the hemorrhage, looking often at Brandon, shaking his head and saying how much he’s been through and how far he’s come back.  Then he rose from his chair, held out his hand and said he was “extremely proud” to meet him, a reaction Brandon has encountered many times before. 

For Brandon, to have worked so hard and come so far to hit this wall is tough, but we have to hope not insurmountable.  He’s a strong young man who's faced trouble before and come out all right.  While we most fervently would wish this otherwise, we all will do everything we can to make it right.    

As always, the continued caring and concern so many have shown Brandon and all his family are truly and deeply appreciated.  

The Hampsons

Brandon Update---March 10, 2005

When last we checked in, Brandon (and all of us) were struggling with the results of his most recent eye exam, and (perhaps not surprisingly) the tone of that communication was a bit bleak.  Many positive things have happened to and for him in the past few days, and these we’re happier to share.

By far the best is news about possible educational opportunities.  We don’t know for certain how things will work out, but (with Amy’s direction, Mom’s help and the generous assistance of BOHS AP Ben Rich and hearing-impaired teacher Sue Ann Cross) applications on Brandon’s behalf were filed for the fall at three colleges far closer to home than the school he originally planned to attend (Chico State).  Excitingly, as of last night (a personal phone call at 7 p.m.!) he’s been accepted at all three campuses---Whittier, Chapman and LaVerne, with a substantial scholarship for high school accomplishment at the latter.   

His growing strength has allowed him to get out and about far more often over the past few days, going to lunch, shopping, on walks and even (somewhat unsteadily and for limited minutes) back to karate class, as well as visiting the high school and Chapman College and even taking a brief trip to Disneyland, where we celebrated his health (and the park’s 50^th anniversary) by buying annual passes.   He’s made some strides in getting back to computing, and though he needs to work hard and sit very close to the monitor, his old talent for installation and design seems intact, and is bringing him some sense of accomplishment---something that’s been missing of late in his life.

Tomorrow he’ll travel back to Cedars to have his first acupuncture treatment, aimed at improving poor circulation in both arms resulting from so many weeks of blood tests and IVs in the hospital.  Right now, his arms are always cold and his fingernail beds are blue, but the Oriental Medicine specialist says this is correctable.  A family friend assures us that acupuncture (though scary to look at!) really doesn’t hurt...just tickles a bit.  Here’s hoping she’s right! 

On the vision front, we’re regrouping and plan soon to get another opinion.  Although we liked the last doctor personally, we have some concerns about inconsistencies in testing and some doubts as to the time he devoted to reviewing Brandon’s case.  We’re trying to be neither overly optimistic nor pessimistic about what the final outcome of all this will be---just certain that his condition has been accurately diagnosed before we move on with helping him make the most of whatever sight he has.

Some moments of these days seem much like life before all this happened, with Brandon back upstairs at work in his room, Mom making dinner in the kitchen and Dad arriving home from the office.  The addition of Beth and Amy makes the house feel far more filled than it was, and both are doing well.  In her part-time position with the CHOC (Children’s Hospital of Orange County) Foundation, Beth provided significant assistance with a recent event that earned nearly $90,000 for a new pediatric heart wing, and also just finished applying to grad school.  Amy wangled an internship (and today a title---Director of Marketing!) with this spring’s Malibu Film Festival, is working (online) toward a certificate in event planning from George Washington University and also has grad school applications in.

Both the girls devote SO much time and energy to Brandon, and he thrives in their company.  Seeing them together is a beautiful thing that can’t help but remind us how much we have to be grateful for.  For all of us, each day is a gift.  Remembering this is our hardest, but most important, task. 

As always, our thanks to all those who hold Brandon near to their hearts. 

The Hampsons