Brandon Update---March 22, 2005

Sometimes when you least expect it, life suddenly gets interesting all over again.

Following his “bone flap” replacement surgery, Brandon had an amazing month---entirely free of headaches and able to go and do far more than he had since last September.  He was thrilled, and ever more eager to get back into the swing of things.  His hair was starting to grow out again and he’d even enjoyed the freedom of going hatless a couple of times. 

Then, out of nowhere it seemed, Monday morning he woke up with swelling on the left side of his head.  We called the doctor’s office and were able to arrange an MRI and an office visit within only a few hours.  Initially his condition didn’t seem that alarming, but it worsened so rapidly that he was noticeably warm and having a hard time not trembling in the MRI machine.  By the time we got to the doctor’s office, his face was very swollen and red and his temperature topped 104.  

So it was that the kind young doctor who initially had to take the piece from Brandon’s skull in emergency surgery and who’d been so happy to replace it just a few weeks past now had to tell him that another surgery was needed to take out the infected prosthesis.  By the time the words were said, Brandon was too sick to understand, and he was admitted to the hospital (just next door) by ambulance straight to the operating room. 

Thankfully, he arrived early enough that swift administration of antibiotics caught the infection before it spread (or at least spread widely).  Still, there was evidence of some infection under, as well as over, the prosthesis, which probably will make the timeline for antibiotic therapy, healing and “re”-replacement of the bone flap at least three months.

Considering that this was his fourth major surgery in just over six months, he seems to be doing well.  We’re not sure he yet understands the significance of this setback, but one thing he has heard quite clearly...and it’s something too good not to cling to.  Toward the end of our post-op talk with the doctor last night, we asked him what change, if any, the MRI had shown in the tumor, as the last look was in December and a follow-up had been scheduled next week.  He cautioned us that a thorough study of the report had not yet been done---then swiftly added that the radiologist said he hadn’t been able to find anything there, and actually had asked him what he was supposed to be looking for. 

Optimists we may be, but nothing in this surgical setback has kept those of us Hampsons who can from walking a few inches off the ground today hoping that this might be true.  

As always, our thanks to all those who’ve held Brandon in their hearts through this strange and unpredictable journey. 

The Hampson Family

Brandon Update---March 23, 2005

Brandon is resting comfortably today, his temperature normal and his appetite good, though he hasn’t been out of bed yet.  The same calm, friendly infectious diseases specialist who watched over him through a brief bout of pneumonia and a blood infection during his earlier extended hospital stay speculated from the first that his current problem was a Staph infection, and today’s test results proved him right. 

The “luck” of getting him to the hospital so quickly was impressed upon us again in his comments, and those of Brandon’s surgeon, who both have indicated that more far-reaching harm almost certainly would have resulted in a short span of time, probably to portions of his skull adjacent to the ill-fated replacement piece, and (had it spread significantly into his bloodstream) damage to other organs, probably first his kidneys.  Fortunately, none of this seems to have occurred.  As it is, he’s on three separate intravenous antibiotics, and is expected to continue drug therapy for two weeks to a month.         

For a kid who spent the days of late last week hiking around California Adventure, playing miniature golf and shooting hoops at his old elementary school, this sudden “return” to sickness must come as something of a shock, but Brandon (rather amazingly, we think) again is finding a way to accept what comes to him with great grace.  No matter how many times he gets knocked down, he just keeps picking himself up and pressing on.  Despite the fact that he’s once again stuck in bed, continually poked and prodded and tethered to too many tubes, he spent today chatting happily about the good news about his tumor and charming the staff with his gratitude and good nature.

Mom smiles and remembers something said about Brandon a few weeks back at the Simonton Retreat.  Watching this still very weak young man, not all that long out of the hospital, as he struggled to gain and share all that he could from the sessions, Dr. Simonton had quietly taken her aside and said he felt Brandon had some “special destiny.”

On days like today, we can’t help thinking he might be right.    

The Hampsons

Brandon Update---April 21, 2005

One month since his fourth surgery and almost as long since we last wrote, and Brandon’s condition remains challenging.  Our days have been filled with ups and downs that have taxed emotions and stolen the notion that much can be planned.    

The opportunistic infection that settled in the area of the replacement bone flap is still being treated, though---thankfully---today he’s off the pump that’s constantly been at his side these last four weeks, doling out full doses of medication every four hours with boosters in between to keep the line open.  The creepiness of being attached to something mechanical day and night, and its propensity to act up at the worst possible times kept us all tense.  Today he had his first bag of a new antibiotic, which---though it’s actually stronger---can be administered in just a half hour for a whole day’s dose.  That, plus an oral medication, hopefully will bring down the persistent swelling and clear up a “clouded” MRI that remains difficult, at best, to interpret.    

When he’s well enough to be with it, he still retains that strength of spirit that’s been his hallmark through these many trials.  In the MRI for the umpteenth time on Monday, he “toe danced” to the machine’s percussive rhythms and made puppet moves with his hands...a favorite trick since he was a kid.  When the nurse took out the rows of stitches in his scalp (this time needed in place of the more common, far easier to remove staples because his skin’s been through so much) he breathed deeply and never even flinched, causing her to remark she’d never seen anyone so composed while she did this.   

Occasionally he still dances with his sisters or goes out to pick up the mail, but mostly, of late, he’s just been sleeping----fatigued by the infection, the antibiotics fighting it and the pain in his head.  Shifting his walk to accommodate the pump (which hung in a bag from his shoulder) seems to have led to discomfort in his right leg, which suffered nerve damage during September’s hemorrhage.  It never really hurt before, but has lately, and favoring it appears to have started the other one going too.  When your legs hurt, your back often follows...and so it goes.  Too many pain killers and muscle relaxants cause you to sleep all the time, and that makes getting up and into the fighting game harder.  Breaking this cycle is our new aim. This morning, sans pump and clearly pleased, he came downstairs for breakfast (a rarity of late), did some stretches with Mom and tried on a few QiGong moves before wearing out and heading back to bed.  We plan to get him out of the house a bit this afternoon, even if only for a brief ride. 

We look around and it’s spring and our sense of time feels warped.  How long it seems that we’ve been on this odd journey, and how much longer still since last spring, when Brandon was so involved in the excitement of his high school graduation.  How simple things were then and how little we knew it.  As always, our continued thanks to all those who hold Brandon in their thoughts.  

The Hampsons

Brandon Update---April 26, 2005

Brandon underwent his fifth surgery yesterday when a shunt was installed to drain off fluid which had accumulated in his brain, most likely as a result of the infection that necessitated removal of his bone flap prosthesis four weeks ago.  We’d indicated in our last update that these last few weeks have been difficult for him, with infection sapping his strength, and his interest in doing much of anything other than sleeping pretty low. 

Out of surgery just a few hours today, he already seems to be perking up.  His color is better and his mood lighter, and---for the first time in many days---he reports feeling little or no pain.  These are things to be grateful for.

He’s expected to spend another two to three days in the hospital before returning home, and we hope to have him back to a closer approximation of his “usual” self in time to enjoy at least a few year-end events (programs, concerts, etc.) at our local high school, where many of those whose company he enjoys most are continuing students.    

As ever, our gratitude to everyone who keeps Brandon in their thoughts and prayers.  Even at the worst of times, he tries hard to wear a smile and always remembers to show gratitude to all those who help him.    

The Hampsons

Brandon Update---May 3, 2005

Sometimes no news is good news, and sometimes it’s the opposite.

On this eight-month anniversary of the day his troubles first began to be known,  Brandon remains hospitalized, the victim of a secondary affliction that significantly compounds his initial illness.  For the most part, his spirits remain high, but these are difficult days.

Brandon wishes to thank those who’ve stood by him in person and those who’ve followed his ups and downs long distance through the many weeks of his illness, and expresses his gratitude---as do we all---for their continued caring.

The Hampsons

Brandon Update---May 6, 2005

Brandon will be released from the hospital this afternoon and be back at home on Mother’s Day, the best gift that we can imagine.  After this latest ordeal, his strength is slowly but clearly returning, and his constant upbeat attitude and steady progress cause everyone who works with him to smile and shake their heads in wonder. In the initial days of his most recent illness, his body chemistry became extremely unbalanced and his water intake had to be restricted to help compensate.  As if all the other pokes and prods and stitches and staples he’s endured hadn’t already been enough, his body began to manufacture kidney stones because of this mineral imbalance, and yesterday was much about the pain of getting these through his system. 

Today seems better, and his latest CAT scan shows this issue to be abating.

He comes home weak but walking, back on his healthful diet, associated with a few new doctors and dedicated to doing all he can to get well.  It’s a challenging journey that we’re all on, but one we also treasure.

As always, our deep and abiding thanks to all those who keep Brandon in their hearts and minds and prayers.  If you have a chance to drop him a line or (better yet) stop by and wish him well, that would be a wonderful thing.

The Hampsons

Brandon Update---May 11, 2005

Brandon arrived home from his most recent two-week stay in the hospital late Monday (instead of the previously predicted Friday) and again has been busy shuttling back and forth from home to Cedars for outpatient therapy yesterday and today.  Twice already this week he’s also been (for the first time) to UCI Medical Center, so these have been jam-packed days.  Beginning Friday, much of his therapy will be transitioned to UCI, in the City of Orange, just a short drive down the 57 Freeway’s diamond lane and MUCH, MUCH closer than Cedars-Sinai in West LA.   He’ll continue on with his neurosurgery group there, and even has added a new specialist on their staff, but also will have complementary doctors at UCI, two of whom actually taught his doctors at Cedars!   As always, these new folks are every bit as kind and impressive as those who came before, and we continue to feel blessed by the caliber of those who handle his care.

Brandon’s most recent stay in the hospital---for his fifth surgery in eight months---has left him quite weak, now able to walk only slightly and most often in bed or on the road to various appointments.  He looks deceptively good, but is on quite a few medications, is very tired and sometimes in pain, and, at least at this point, often seems somewhat confused.  The shunt inserted to drain fluid from his brain is all but invisible and appears to be working well, but it’s going to be a while until he recuperates enough from the last few weeks’ events to know what the end result of all this will be. 

At the times when he’s most awake and aware, he’s still very much the same engaged and cheerful young man he once was, yet recent events clearly have taken their toll, and he has a tough road yet to travel.

In the midst of all this, Terri’s Mom (91 years of age, as opposed to Brandon’s 19) also has been in the hospital, and now will need to make a transition in her living arrangements.  We are so very thankful to Gary’s mom for seeing to her this past week, as dealing well with the day-to-day needs of two ailing family members in two such disparate locales would have been all but impossible for us. 

We drive through Brea Canyon on yet another foray into LA and inhale the fullness of this gloriously blue-green spring morning.  Mustard and lupin blanket the hillsides, a creek that’s been stilled for a score of years races along the roadside, and, as we round the bend, snow-topped mountains startle us again with their sudden beauty.  We rub Brandon’s back, help exercise his legs and praise him in all he attempts. When he’s able, we read and talk and sing and joke.  We continue to experience events large and small together, and ask only to live each day finding what joy we can. 

As always, our continued gratitude to all those who’ve traveled with Brandon on his journey and reached out to him with their hearts. 

The Hampsons

Brandon Update---May 18, 2005

Much in Brandon’s world remains the same as he very slowly regains strength.  These mornings he enjoys that age-old favorite of teenagers, “sleeping in,” sometimes still catching zzzzzzzs till almost 10.  He walks a bit around the house, eats reasonably decent meals (though it takes him quite a long time), enjoys movies on the TV, chatting with the family and other folks who drop by to say hi, and has his daily therapy trips to UCI, where the staff continues to impress us with its kindness.    

We work on stretches and “dance” moves he can do while reclining, play out zany scenarios with finger puppets, listen to Copeland and Sinatra and try to whip up enticing entrees to encourage more calorie consumption.  His weight always has been hard to keep up, and it remains a real issue in this.  We’ve resisted the high-sugar content of some of the more common nutritional supplements (as sugar tends to be bad for what ails him) but probably will have to succumb, as he just can’t seem to keep any weight on. 

While much in his life seems returned, at least for now, to a predictable pattern, the world outside moves on.  Terri’s mom, who lived here in Brea since her dad died four years ago and often went to lunch with her before all this started, died late Monday afternoon.  She was 91 and never had been in great health, and, in the end, she faded very quickly.  With her passing, our already small family grows smaller, and we remember better times. 

As always, Brandon, Beth, Amy, Dad and Mom continue to thank all those who keep his health and healing in their hearts.

The Hampsons

Brandon Update---June 3, 2005

Nine months out from the day we first learned Brandon had a medical problem, he remains very tired, sleeping most of the time except during meals or therapy trips to UCI.   He’s been able to tolerate far more therapy than anyone predicted, a good thing in terms of setting the disease back, but it still wears him down.  His blood counts, even though not low enough to discontinue treatment, hover very near that point, but otherwise he’s manifest almost no side effects---something everyone expresses amazement with.  According to every doctor, nurse and tech we see, he should be devastatingly ill, but he’s had no nausea or other digestive distress except a dry/sore mouth, which responded quickly to treatment.  Once relatively uninformed about herbal and homeopathic remedies, we’ve come to strongly believe it’s the many supplements our nutritionist recommends which have kept him so “healthy.”

Counting prescriptions and supplements (the latter varied between those that decrease inflammation, those that build immunity and those that enhance treatment to the delivery site while protecting other parts of the body) he takes a vast array of pills each day.  In most cases, we find the smallest-sized, high-potency caps we can, almost always from internet sources, and he’s amazingly good about getting them all down, usually between sips of high-calorie chocolate shake (also infused with lots of good stuff). 

Brandon’s big out-of-the-house news this week is that Wednesday he was able to attend a few minutes of the high school pop concert, the last instrumental music show of this school year.  He was enthusiastic about the percussion ensemble’s performance, and had a chance to sneak back to the band room for a while to catch some of the activity there.  Otherwise, most of his awake hours continue to be spent in quiet pursuits, enjoying visitors, looking at movies and family photos on the TV, petting the cat, stretching/lifting light weights and “arm dancing” in bed with his sisters.  A few days ago they got out those great long tubes people bop each other with in the pool and did some sword play to the Stars Wars theme.  Lots of laughter (and a few good photo ops) ensued.

This afternoon we meet with a new specialist at UCI, and our last daily therapy there will be Monday. A new MRI and regular check up with the doctors downtown has been scheduled June 22, enough time after treatment ends to fully ascertain its effect. 

All along this journey, the kindness of so many people has never failed to touch us.  The people at Dad’s work, Mom’s school district and in the Brea community have been so very amazing, and we’ve been almost adopted, it seems, by a host of others far and near who follow Brandon’s progress and send good wishes his way.  The hundreds of people who’ve treated him medically have been almost unfailingly kind, some well beyond the scope of what professionalism demands.  Yesterday, the optometrist who tried so hard to get his eyes corrected, but couldn’t---someone we’d only met once---called to see how he was doing and said that he’s often in her prayers.  His audiologist, who moved up to a management role and rarely sees patients anymore, made a special point of being there to check out his ear when it stopped working last week---thankfully, it now appears, due to inflammation and not something else.  Having such a strong support team helps so much in making it through these trying times. 

 Our continuing thanks to all who keep Brandon and those of us who support him in their hearts.         

The Hampsons

Brandon Update---June 7, 2005

It isn’t every day that the entire Brea Olinda High School Marching Band makes its way up Stone Canyon to play a concert in front of our house.

But it was yesterday...and Brandon could not have been more delighted.

He rolled out to greet his friends, and was able to enjoy several songs and socialize just a bit.  Having grown accustomed to quieter pursuits, the music was, for him, at times a tad loud, but he compensated by turning his hearing aids down just a notch...and then everything was fine.  Not unexpectedly, the songs were upbeat and the performance outstanding.  The chance to see old friends again meant so much, and the memories were captured forever on discs and video too.   

These days Brandon sometimes has trouble remembering today what happened just hours before, but not so this morning.  Straight off, as soon as he woke up, he recalled the band’s visit, and the smile on his face as he remembered was just as wide as it was when they were here. 

Today marks our last trip to UCI for therapy, yet another graduation of sorts.  Like the staff at Cedars, the people there always make us feel comforted, and unfailingly treat Brandon as one of their own.  Those of us who come along for the ride will miss the little things: the people we know from the waiting room...the coffee cart with the sweet news clippings and iced mochas and fattening scones...even the less-than-adept parking attendants, who mean well but haven’t yet gotten their mission down quite right.  Starting tomorrow, the days will again belong only to us, so it’s time to roll up our sleeves and make sure there’s always something amusing to do.      

Our best to those who follow Brandon’s news, and a promise of pictures soon to follow.

The Hampsons

Brandon Update---June 15, 2005

Here in Brea, tomorrow brings yet another graduation, the 11th such occasion where Mom has been one of those in the robes helping to give out diplomas.  How short a time...and how long...it seems since this day last year when she handed Brandon his. 

Brandon’s strange journey (and ours along with him) started in the earliest days of last September, just as this school year was beginning.  For the first time in two decades, no member of the Hampson family has been enrolled in school this year, yet the circumstances of Brandon’s illness have provided us an education all their own.  For better or worse, Brandon himself remembers little of what’s happened in these months, either his trials or his triumphs.  Each surgery has subtracted its share of his memories, and the toll taken by the illness itself, plus radiation and drug therapy, leave little for him to latch onto.  He takes each day as it comes, and accepts it as a good thing. 

The rest of us, who remember so much in such detail, have learned more than we ever wanted to know about a thousand things we never expected to experience.  Looking back as we head toward graduation 2005, we offer up some of those things we now know better than ever before.

Lessons Learned Along The Way, 2004/05:

Treasure each day everyone you love is healthy and whole. 

Focus on the moment. 

Don’t take fewer pictures and videos of your kids just because they got big.  If anyone in the family won’t have their photo taken, cajole or threaten them till they relent. 

Hug often.

Eat your fruits and vegetables, especially the colorful ones.  All vegetables are good, but the five “best” are broccoli, cauliflower, cabbage, garlic and onions.  Among the “finest” fruits are blueberries, strawberries, papayas, pineapple, kiwi, citrus, bananas and mangoes.       

No matter how well you think you’re eating, the American diet and food supply aren’t all that they should be.  Learn about nutrition.  Enjoy salmon and soy, sip green tea, avoid unhealthy fats, find ways to add flax oil and fiber, and try to buy organic.  Don’t eat things that won’t rot (but eat them before they do!) or that have ingredients you can’t pronounce.  Take high-quality multivitamins. 

Always say good night. 

Using a cell phone without an ear bud just isn’t worth the risk.      

Never ever let anyone you love be without good health insurance.  The costs of care often are astronomical.  Quality insurance buys the best treatment at prices you still can afford.   

If you get sick, do your homework.  Find a good doctor and be able to hold up your end of the conversation.

Memories are magic.  Hours spent together over the dinner table, attending school and social events and visiting far-away places are all the more meaningful when times are tough.   

Even if it’s just to watch movies, buy a big screen TV.  (Trust us on this one.)

Remember to laugh, even in the darkest of times.

Don’t take tomorrow for granted.  No matter how hard you work or how well you plan, nothing is as certain as it seems. 

We’re all stronger than we think we are and can do things we never dreamed would be asked of us. 

Love, compassion and kindness transcend all else.

The caring of other people makes the worst moments in this life more bearable.   

As always, our gratitude to all those who follow Brandon’s story and hold his health and happiness in their hearts.

The Hampson Family: Gary, Terri, Beth, Amy and Brandon

Brandon Update---June 16, 2005

Not so much an update as a brief note:  New photos of Brandon and friends (including his recent visit by the BOHS band) can be found on this website.

Our best wishes for the summer to those of his friends in our school district who, as of Friday, look forward to time away from their classroom or school site.  We at the Hampson house greatly appreciate each person who’s sent good thoughts and wishes our way, and have to believe this caring has made a difference. 

During the coming weeks, if you won’t be at work but would like to receive updates, please send an alternate e-mail address to Sue Nowers or us. 

The Hampsons

Brandon Update---June 21

This is the e-mail we never wanted to write.

Outside, the sun is shining and the flowers are blooming, as they should be on this first day of summer.  But inside our home, one of us is running out of time.

From the beginning, on the day of his first diagnosis, there never was much hope that Brandon ever would see old age.  The words that we never wrote, the ones we felt were his alone to share, were that he has cancer---an aggressive form of it known as Anaplastic Astrocytoma. 

Since September, we’ve known that he probably had only a couple of years left to live, but we hoped that he’d get that---and prayed that he might be one of the few who survive far longer...maybe even long enough for someone, somewhere to come up with the magical cure to make it all just go away. 

For a blissful time, it seemed that he might be one of the lucky ones.  He was young and had been strong, and this should have made his odds better.  He worked exceptionally hard, and was willing to try many things that had showed some success.   When his March MRI came back with no sign of the tumor that started it all, we had a hard time not being ecstatic.  Whatever he was doing seemed to be working, and the future again had some glimmer of light.

But it was not to be. 

We’ll never know what it was that caused the disease to come back as strongly as it did.  Maybe it was the immune-system-weakening effects of chemotherapy that led to the Staph infection.  Maybe it was the virulence of the disease itself.  Maybe it was just bad luck.  Whatever happened, by the time of his April MRI, two small new tumors could be seen in his brain. When we shared with his doctors how much pain he’d been having in his back and legs, more MRIs were run, and tumors now also were seen for the first time in his spine.   Most alarmingly, the entire lining of his nervous system glowed white with a thin coating of cancerous cells.   From this point on, hope was something we clung to, but never really could believe in.

For several weeks now, even while the good doctors at UCI have struggled to buy more time, we’ve watched as he daily grows weaker.  When he hemorrhaged last fall after that first biopsy and lost the use of his right side, he worked so hard to get it back.  But as his strength has ebbed, those old ghosts have come back.  He’s needed more and more help getting around, has had to give up doing things with his right hand and sometimes coughs when he tries to eat.  Recently we’ve feared his swallow again might weaken, and Monday morning we knew that it had.

He’d been scheduled for an MRI and a doctor’s visit downtown later this week, but that seemed too long to find out what was going on, so an emergency scan was run at UCI.  Read late today, it showed the disease has not been tamed by this most recent round of radiation and chemotherapy, but instead has progressed, with lesions in his brain now “too numerous to count.”  With this last treatment, Brandon has exhausted all medical options now available, and his poor MRI results almost certainly will prevent him from being accepted into a clinical trial, even if we could get him to Washington, D.C. (site of the sponsoring National Cancer Institute) to take part.     

To say that these are sad hours at our home would be the biggest understatement of our lives.

Despite his situation---and probably partly also because of it---Brandon remains calm and cheerful, unable to do much, but happy just to be here.  His understanding of events grows diminished, but he seems to feel no fear.  He smiles and waves and talks a bit, strokes his growing collection of bears, watches a bit of TV, eats smooth foods, chats with his sisters, rolls his eyes at Dad’s jokes and yesterday enjoyed a wonderful collection of visitors who kept him awake and animated through most of the day and evening.  He seems to feel very little pain, and for this we are so grateful.

Though Brandon’s days clearly seem numbered, we intend to spend them as best we can, being together, sharing smiles and stories and hugs.  He always has brought us great joy, and we intend to give him all we can.

Through the difficult days of these many months, we’ve felt the love and caring of many, and continue to be grateful that Brandon has found his way into the hearts of such wonderful people. 

 May health, happiness and peace be with you all.

The Hampsons

Brandon Update---June 27, 2005

"Great occasions do not make heroes or cowards; they simply unveil them to the eyes.  Silently and imperceptibly, as we wake or sleep, we grow strong or we grow weak, and at last some crisis shows us what we have become."

                                                        --Brooke Foss Westcott, British theology professor and bishop (1825-1901)

He was a wonderful boy who became a fine young man, and--to the last--he never lost the sweet spirit and positive outlook that always had been his way.  He fought with all he had for as long as he was able against a foe he could not defeat, and will be mourned and missed by all of us every day of our lives.

Brandon left this world Sunday afternoon just before 2 p.m., surrounded by those he loved and who always will love him.

We feel so very lucky to have known him and been his family. Watching him grow, being a part of his days, always was a great joy, and we were--and are--so very proud of him. 

We will remember his kindness, his courage and his smile, and vow to honor his memory always by embracing this life as he would have.

Gary, Terri, Beth and Amy Hampson