Keith Kelley was diagnosed with Stage IV Neuroblastoma on August 9, 2006 at the age of ten. An aggressive childhood cancer of the sympathetic nervous system, it had already spread to other parts of his body when it was discovered. After 7 rounds of chemotherapy, endless tests, and an autologous bone marrow transplant and stem cell rescue he relapsed. After 2 cycles of experimental antibody therapy the cancer overtook him and he died on August 17, 2007.
It has been over a week since Keith’s passing and still I find it difficult to breathe. We are surrounded by constant reminders of Keith at home, from his artwork, to his games, to the clothes in his closet and the food in the cupboards. It is good and it is hard at the same time. Time heals they say and yet the irony is that our newfound appreciation of time recognizes just how fleeting it is indeed. Extending every moment, especially time spent with loved ones has become so important to us. Which brings me to Scott.
There are so many things to say about Scott it is hard to know where to start. So I’ll just ramble on aimlessly with the usual parental license. First, we are so proud of how Scott handled this past year. He was always there when Keith needed him or more precisely when Keith wanted him, which was all the time. He never stood back or changed his demeanor despite Keith's illness, he just kept being the great big brother Keith always knew and admired. Even when Scott learned Keith would not get better, he maintained his remarkable composure never telegraphing to Keith that anything was amiss to the very end. Scott is off to high school on Wednesday, marking another milestone in his life and we wish him well.
During this past summer Scott had a great swim season. He set some high goals for himself and by the end of the summer had accomplished what he had not been able to do over the previous 8 summer swim seasons: achieve a gold time standard and qualify for the county meet. He did this in not one individual event, but three: butterfly, individual medley and freestyle. It was the most impressive display of hard work and determination Josie and I have ever witnessed from Scott (with the possible exception of leveling his W.o.W. character to 70). There is no question that Tyler and all of the Park Pool coaches and families had a huge impact on Scott this year, pushing him to his physical and mental limits. His friend Brian also lit the competitive fire in him as they traded fastest times in their age group for most of the year. But something tells me that Scott was also pushing himself for Keith, even quietly acknowledging to his mom after earning his first gold time ever that he wanted to do it because “Keith couldn’t swim this year.” Scott may not be a man of many words, but the few he speaks carry a lot of weight.
I hope any and all Park Pool readers out there understand how important you have been in keeping our lives centered and on track during the past year. From get-well banners, to one-on-one support you were there for us. The Wentzel family deserves special recognition from us for organizing the Swim-a-Thon earlier in the season with the final tally of over $9,000 raised to benefit Children’s Hospital Oakland. An amazing community within our community.
On September 9th following the memorial service that starts at 2pm there will be a casual reception. We thought it might be interesting and fun to post in the reception hall after the service some of your remembrances of Keith. The idea goes something like this: Write a couple of lines starting with “Dear Keith…” recalling a memorable occasion or fun recollection of Keith’s life. You can simply post your note to this blog entry and we will print them on cards and pin them up on the bulletin board(s) in the hall allowing us all to share and celebrate the fun and animated life that he enjoyed. If you prefer to be less public about it, you could simply bring your note to the service (please try to keep it to letter size or smaller) and we will see that it is pinned up. We thought this might be a good way for those of you who want to share a few words with Keith and for those of you who might be wish to be here but are unable to attend to participate in a meaningful way.
The photograph below is one of the last I captured of Keith. It will always be one of my favorites even though he is somewhat out of focus. I can still clearly see in his eyes the care and affection he had for Kirby and the mutual comfort and trust that Kirby found in Keith’s presence. They were an inseparable pair.
Kirby, like the rest of us, is still trying to find his footing without Keith.
(click to enlarge)
So it has come to this despite all of our collective hopes and prayers. Keith passed away quietly just after midnight last evening. There is nothing more to say other than he is now finally free of his disease and at peace. We are simply winded and wordless.
Thank you to all who shared his in journey and gave us the hope and motivation to deal with each day of his difficult struggle. We are so sorry for the pain this news may bring to friends and others who have crossed Keith's path. He will be missed by all who had the fortune of knowing him but never, ever forgotten.
The following obituary should appear in the Contra Costa Times in the next day or two.
* * *
Keith DeLano Kelley
July 15 1996 - August 17 2007
We bid farewell to our beautiful son Keith. He touched the lives of so many people in his eleven years of life. He was a lover of creatures great and small, a budding artist and actor, a swimmer and most of all a great brother. Keith will always be remembered for his unique sense of humor, his love of interesting foods and his unique perspective on life. He will always be a part of our family.
Keith passed away peacefully after a courageous year-long battle with cancer. His bravery during this difficult year was truly inspiring. We are indebted to all who surrounded us with love and support throughout this journey. We will never forget you Keith.
He is survived by his parents Josie and Steve, his big brother Scott, his cat Kirby and many loving relatives.
A memorial service to celebrate Keith’s life will be held at
In lieu of flowers the family suggests a contribution to George Mark Children’s House in
Parent’s Note – August 15, 2007
Keith’s year-long journey has had many twists and turns, leading to a place we had hoped would return him to a normal childhood again, but instead we have been led to the one place we hoped we would never go. Sometimes we can’t choose the paths we take and so we find ourselves where we are not by lack of skill by medical teams, or by lack of family and community support and certainly not by lack of courage, character and determination on Keith’s part.
On Saturday evening, as the Perseid meteor showers rained overhead, Keith suffered a cerebral hemorrhage and slipped into a deep coma with no hope for recovery. His final conscious hours were happy and enjoyable, Scott by his side the entire day. He even had an animated phone conversation with Annie discussing all of the interesting and unusual things that Keith enjoys. Mercifully, the event was quick, Keith probably wasn’t aware of what was happening and most importantly we don’t think he suffered greatly.
We are no longer able to care for Keith at home with assistance from the Comfort for Kids hospice program. This is where we had hoped he would spend his last days - in the comforting setting of a familiar environment with Kirby nearby to curl up with him. It was unimaginably difficult to watch the medical transport van take Keith from our home knowing he wouldn't physically return, but we decided to move him to George Mark Children's House, a facility that provides end-of-life transition care along with family support for kids in situations like Keith’s. It seeks to replicate the comforts of home in a nurturing setting while providing the nursing care that Keith needs now (more on this incredible place at some later date). It is the right place for us to be given the situation.
We have decided not to try to extend his life artificially and will withhold any further active medical intervention other than what is needed to keep him comfortable – he’s been through more than enough already. He is in a peaceful state and we are with him at his side, as has been the case throughout his journey, to the point where his path and ours must ultimately part. His physical life will soon pass and that moment will come at any time now.
It is so sad that it has come to this point; especially after all he has endured. He never let go of the idea that he was going to get better and that comfort stayed with him and buoyed him through all of the incredibly difficult treatments he faced. We have struggled with our emotions for days now and needless to say already miss him so much. The poem I penned below about Keith and his journey past and forthcoming is my inadequate attempt to begin to deal with it.
Fresh on our faces
Soothing and replenishing
Among nature’s forces so diminutive
Yet able to coax quiet waters
To sparkle to attention
Reflecting back shimmering
Filling sails and uplifting
With unyielding but gentle sway
On small shoulders ride life's simple offerings
Delivering fragrance to our souls
Pollinating our consciousness until we too
Take notice of unrecognized beauty
Like seeds from a dandelion
The smallest of nature's works
Are moved at its urging
In its short life it tussled our hair
With sharp and bracing presence
Refreshing our spirits and
Filling our lungs with its gift
Yet cleverly knowing when to vane shift
Pushing gently from behind
Ephemeral though it would be
Slowly it stilled without reason
As if some unseen thief
Realizing its unique endowment
Crept in under night’s cloak
And stole breath by breath
Its very essence until motion ceased
And the breeze was no more
Left stunned in stifling absence
Disoriented and confused
We gasped for air -
Grasping for any satisfactory measure
To explain why something so benign
Something so beautiful should ever leave us
And yet what seems may not be
Imperceptibly at first
A faint shift of light hints its presence
And a leafy chorus softly gathers its visual voice
Awakening branches to new life
Swaying in profound relief
The welcome return of the breeze
From a new source it flows
Urging fescued hills to wave their greetings
In familiar but singular patterns
Altering the spirals of red-tails as they climb
Buoyed by ether strings
To lofty points where the spreading vista
Exposes our very small place
In rhythmic earth breaths
The breeze passes its soft reminder
To all who might pause and consider
The wonder of something so small
Something so gentle and pure
Leaving such indelible impact
Living large within its time -
Touching all who care to notice
At some point or another we’ve probably all picked up a stick on a beach somewhere, jabbed it into the sand and scratched out a circle, sweeping an arc until finally closing the loop at the very point it began. I am reminded of this simple image tonight because in a way our journey has come full circle.
It has been one year to the day of the first entry of this journal and so we have literally traversed the solar system riding bronco-style on the back of Gaea only to return to the exact spot we started. The neuroblastoma tumor that was widely disseminated throughout Keith's body 12 months ago has likewise circled back from near remission to an advanced stage once again despite the aggressive treatment and accompanying travails that he has endured.
We will continue treatment at home and spare Keith any more hospital time if we can at all avoid it. And while there is much to tell, the subject unfortunately isn’t one that we wish to detail in this forum right now. Maybe at some future point we will be suck up our courage and be able to share more.
For now, we will celebrate the time we have together as a family and ultimately stand witness to the closure of a small but absolutely perfect life-circle.
On top of all that remarkable news, Keith’s bruised eye cleared up fully so he decided to take up Wii boxing in the attempt to give his opponent a shiner instead!
A good week for us, and in our effort to try to regain some sense of normalcy I even held back writing entries for this blog.
Keith and Scott enjoying a relaxing moment....
or is it Scott and Keith? (Sad but true...)
As Julie Whitsitt reported the fundraising results of the Orinda Park Pool swim-a-thons resulted in a very impressive $7,500 raised to date for Children’s Hospital and another $1,500 for Hope Through Opportunity. To all who helped sponsor a swimmer we are very appreciative. The upcoming week is ‘Spirit Week’ at OPP, a fun series of days leading up to the big OMPA meet next weekend. Car decorating, skit night, shave down, pasta feed as well as the usual mental and physical preparations for the big event are on tap and should keep Scott and most of the youth of Orinda well occupied.
Unfortunately this next week also marks the end of our remarkable normalcy as of late. Keith will need to return to Stanford for the usual battery of tests and scans Wednesday through Friday which will give us an indication of how effective his current therapy is. We’re not looking forward to it plain and simple….
Particularly after having such a remarkably unremarkable week.
Parent’s Note: Day +136
I suppose it’s time to update everyone after almost a week’s hiatus from the editorial desk (actually the kitchen counter). First, Keith’s plentiful pill plight seems to have abated as the week has progressed. After a visit to the Stanford Clinic on Tuesday Keith, along with a good lab report, managed to convince the medical team to whittle 4 pills from his daily diet, making the remaining 10 or so a much more manageable daily task. The really big news is that Keith has been given the green light to go inside buildings other than our house and the hospital as long as they are not too crowded (read: mostly empty). His first request was a visit to Best Buy to spend some birthday money on a new Wii game.
His appetite is starting to return a bit led by a strong interest in food – no big meals but lots of small ‘samples’ instead. Physically, he remains much less active than most 11 year olds, still we manage to get him to walk up and down the street most days and when inside the Wii has been great to keep him active and entertained. He developed a bruised eye for no apparent reason early in the week and even he admits it looks kind of ‘brutal’, but it seems to be clearing. So the few times he has gone with Josie out of the house he wears his ‘shades’ to keep his shiner concealed and the paparazzi at bay. Keith is having a friend sleep over tonight and it’s just nice to see him enjoying himself again. We played the new 'Charlotte's Web' movie on DVD which caused Josie to get teary-eyed at the end. Keith had no sympathy, however. "Mom, you just don't cry at computer generated spiders". There you have it.
As for other news, Scott is having a great swim summer. He has worked so hard all summer at practices and today it paid off with a gold time in the 50 Fly at this morning’s swim meet which qualifies him for the County meet in a few weeks. This is his first gold time ever. He is very proud as are we of his accomplishment.
Great swim Scott!
Keith has been emoting at length about all sorts of food related topics lately. Tonight the subject was pizza and he rambled on for about 30 minutes on his philosophy of pizza and various ideas he had for the perfect pizza as well as restaurant ideas: Pizza Boat was one idea, where customers get to select various gourmet pizza slices from floating pizza pans a la sushi houses – there could even be a sushi pizza.
“Think outside the crust” was his leave behind for us.
Keith finished his antibody infusion on Thursday as planned and tolerated the actual infusions well with the expected fevers associated with the antibody reactions but no substantial pain as is fairly common. But by Friday morning he clearly wasn’t recovering as fast as he did the previous round a month ago and complained of a shortness of breath and developed a cough. By mid day he was clearly weak, struggling and a bit scared. A chest x-ray showed early signs of pneumonia so he was placed on an antibiotic regimen and the discharge papers were set aside for the time being. As of the last check before writing this entry it sounded like he was improving a bit so with any luck he is over the hump for now.
Of course he was extremely disappointed to learn that he would not be able to return home today. As difficult as the high-dose chemotherapy rounds were for him, this treatment ranks right up there.
Not much fun.
Today was the Orinda Park Pool Swim-A-Thon to benefit Children’s Hospital Oakland in honor of Keith. It was a cold and foggy morning for a swim but it didn’t seem to dampen the spirits a bit. I have no idea how many kids swam laps but it was probably well over a hundred, each with goals ranging from tens to hundreds of laps. Altogether that’s a lot of laps and I am sure Children’s Hospital will be very grateful to receive a sizeable donation. Thanks to the Park Pool families, coaches and swimmers that organized and participated in this event, and especially to those of you who sponsored a swimmer.
Scott set a goal of 200 laps in 90 minutes and swam 212 – over 3 miles! In fact he swam the first 100 laps without taking a rest. Now that’s the stuff of ironmen! In typical fashion Scott brushed off the effort as ‘not too bad’ after toweling off. Later in the day he admitted that his arms were sore in places that they haven’t been sore before.
Scott after 212 laps
The next age group readies for their swims
Balloons: Nothing out of the ordinary – but a very festive Safeway helium assortment nonetheless.
Cake: Josie baked a ‘trial’ cake a couple of days before Keith’s birthday using the octopus mold acquired for the occasion just to make sure the cake would turn out of the pan and would not be a disaster on Keith’s actual birthday. It did turn out great but proved somewhat challenging to decorate. Asked how he liked it after a taste sample, Keith was somewhat reserved in his excitement. We found out later he didn’t really like the idea of cutting off the poor cephalopod’s tentacles and serving them up to his guests. Remember, Keith is a friend to all animals. So it was agreed to revert to Plan B – a simple yellow cake with chocolate frosting. Everyone was happy and no animals were hurt in the process.
Presents: Keith had a very short wish list and had been hoping for a Nintendo Wii console for some time. He wasn’t disappointed and he now has one of his own to add to our growing collection of electricity-consuming gaming devices. He was quite happy and relieved to see a wrapped box matching the size of a fresh from eBay Wii. Within minutes of opening the box it was already plugged in, in turn incrementally expanding the carbon footprint of our home. In all seriousness, this is a great invention. Unlike all of the other gaming consoles that seem to encourage the player(s) to sit on the sofa, this one requires the player(s) to stand up and physically simulate the action of the characters on the screen – a golf swing, a bat swing, a tennis swing and yes, I suppose even a sword swing. It is especially great for him because it seems like a fun way for him to get his body active and moving again. The added greenhouse gases seem to us like a worthwhile trade-off.
Rat Hunt: This was actually an idea that we hatched on a variation of a typical Easter egg hunt with a couple of twists to appeal to a group of 11 year old boys. Hidden around the yard were a bunch of extremely well camouflaged plastic “rats”. For every rat they found, Keith and his friends earned “points” used toward “purchasing” goodies from the “store” which essentially was a dining table full of fun junk. They found almost all of the hidden rats and subsequently cleaned out the store.
What made the day even better was that Keith’s uncle John arrived just before the party after traveling some 25 hours from India where he, Nancy and their boys have been living for the past 5 months or so. There was a moment while we were eating dinner the following day that a surprised Keith asked John “What? You mean you work for Google?” John nodded yes. There was a long pause while Keith pondered this. “Sweeeeeet!” he finally said.
Sweet indeed. It was a great Wii-kend for him.
Now fast forward to Monday where Keith headed down to Stanford mid-afternoon and is currently holed-up in a patient room in 2 North at Lucile Packard Children’s Hospital awaiting the beginning of the second course of immunotherapy that begins in the morning. He’ll receive three days of a special antibody infusion and if the previous course is any indication he will not be feeling too well toward the end of the week but should recover by this time next week. It’s no fun but it’s important and even Keith understands this. He says he is going to use this week to study up on the strategy of some of the Wii games he received so that when he gets back home he will be one step ahead so to speak.
Keith has been enjoying this last week at home highlighted by several encounters with friends, lots of Scott time and well exercised ‘game thumbs’. An uneventful trip to Stanford for a routine clinic visit on Tuesday confirmed that he looks as good as he feels was the only real medical event of the week.
In anticipation Keith’s birthday celebration this weekend Josie came upon one of those brilliant ‘gotta have’ items in a Williams Sonoma catalog – an octopus cake pan. Keith’s eyes bulged out in amazement and he was clearly very happy with the idea of a cephalopod cake.
Weird kid, weird parents….
Keith continues to feel well and even looks great as well. In fact, apart from the swimmer’s muscles and longer hair he had a year ago you would never know on quick glance what he’s been through over the past year. And apart from the annoying plantar wart on the bottom of one foot which causes him to hobble around like
Because Keith is technically in isolation and not permitted to go inside any buildings other than our home and the hospital, our summer excursions have been, shall we say, somewhat limited. Outdoor venues that are generally close to home are on our "do" list, relegating almost everything else to our "don't" list. Undeterred, we’ve enjoyed both the UC Berkeley and Tilden botanical gardens, Park Pool, the local farmer’s market as well as short walks in the neighborhood.
Looking ahead, Keith is scheduled to be re-admitted for his second course of antibody treatment the second week of July. If this course is anything like the last course we aren’t expecting him to feel especially great during that week. Because this treatment round coincides with his eleventh birthday we’ve decided to celebrate his birthday a week early while he’s still feeling good.
Ok, the Gunsmoke tie-in might be kinda' lame.
Swim-A-Thon to Fight Cancer
In a great gesture of support our friends at Park Pool have arranged to have a swim-a-thon in Keith’s honor on July 10th to raise funds for a charity of our choice. We spent a long time thinking over what might be a good organization to direct the fund towards and decided on Children’s Hospital Oakland for all they have done for us and other families with kids undergoing difficult illnesses. For those of you out-of-towners who feel like supporting this cause (and it's quite ok to decline), you can sponsor Keith’s brother Scott (or another swimmer) with either a flat amount or a per lap pledge. Just a word of caution though…. Scott says he is planning on swimming 200 laps (nearly 3 miles!). Checks should be made out to: Children’s Hospital & Research Center Foundation and rather than posting our home address they can be sent to my office address:
All donations are fully tax deductible as allowed by law. Tax ID# 94-1657474
We had arranged for Keith to have a friend over to the house at 10am today, and at 10am he was still sound asleep even though we had wrestled him awake a couple of hours earlier to perform our vampire duties: drawing labs. Why was he so tired?
After a little bedside sleuthing, Josie spotted the book Keith had started reading the night before: The Cat Who Went to Paris and noticed that the bookmark was near the page 100 mark. Now this is a young reader book, but the type face is still quite small - really no different than any paperback novel. It turned out Keith stayed up to midnight reading this book in bed and obviously enjoyed reading it.
Josie and Keith's friend finally coaxed him out of bed, the play date went off without a hitch and he had a great day of fun. He got a good night's sleep after all.... sort of.
Keith has been feeling really good lately which makes us all feel a lot better.
“Mom, I’m a meat eater. So where’s the meat?”
You sorta’ had to be there, but Keith blurted this out as he was perusing the toppings for our home made pizzas tonight. Now, in our defense pepperoni was a choice but Keith had a hankering for more, like some emaciated T-Rex who wasn’t satisfied with a simple Apatosaurus dinner. In addition he requested chicken, ham and bacon to augment the vast spread of toppings that Josie had already arrayed neatly in small white bowls on the counter including black olives, capers, corn, scallions, fresh parsley, home made tomato sauce, two types of cheese, and spinach. After some negotiation, Josie relented (caved) and agreed to add bacon and Keith seemed to be happy with that.
The main reason for sharing this is that finally Keith seems to be interested in food again after what seems like a couple of weeks of picking at his plate. He’s been gobbling up lots of caloric food (aka, chocolate shakes & s'mores) as well as showing a renewed interest in the usual eclectic and ethnic foods that he enjoys when he is feeling good. He even had sushi for the first time a few days back after some pleading with the doctors. All in all, a fine development indeed… He’s also been enjoying having several of his friends come over to the house and test their video gaming skills against his well-honed hand-eye reflexes.
Annie and Don are now safely back in Charlevoix where they belong after taking the red-eye Wednesday night. We really enjoyed their visit and only wish we could reciprocate with a visit to northern
“Kirby and I have a lot in common. We both like to itch” Keith
Now I’m pretty sure neither of them have fleas, so I presume what Keith really meant by the term ‘itched’ was shorthand for ‘feels good to get itched’ which I know to be true for both of them.
The last couple of days have been like some wild theme park ride – high highs & low lows with lots of adrenalin thrown into the mix. The highs included being discharged from Stanford and returning home to Kirby, soon followed by the arrival of Annie and Don on Friday afternoon. The lows occurred later in the evening and night as Keith began to complain of increasing pain in his arm and shoulder. At first it was just a dull ache, but by 2am we were not able to control the pain with the medication we had at home and finally called the hospital to speak with the on-call oncologist. After a long discussion with the doctor, with no way to get more potent pain meds without being admitted, and with Keith still not able to cope at all we were left with no choice but to take him to the ER. The thought of retuning Keith to hospital again so soon after celebrating his return home (figure a 2 to 3 day admission minimum) was crushing to say the least and for Keith it was simply an unbearable thought. Just as we were getting dressed to leave the pain eased a bit and by 4am with another call to the hospital we mutually agreed that staying put at home would be best.
One theory offered by the on-call physician was that this might be a continued effect of the antibody treatment actively working. So despite the unfortunate pain, this would actually be a good event not a bad one. Keith quickly embraced this idea and calmed down enough to sleep through the rest of the night peacefully.
Saturday was mostly a quiet day at home with Keith feeling a whole lot better. He was essentially pain free throughout the day. He spent quite a bit of time challenging anyone in the house who dared to battle him in one of his favorite video games. To no surprise, he emerged victorious at the expense of each challenger, but we all shared lots of laughs and he seemed to be really enjoying himself as his character smashed, bashed and crushed all of our pathetic characters.
Had we actually made the trip to the ER the night before this day would have followed a completely different course and a much less pleasant one to be sure.
We’re still home and glad to be here.
Hmmm. I’ll take boring.
Of course this was the last day of school for Keith’s 5th grade friends all of whom are ‘graduating’ as well from elementary to intermediate school next fall. Their celebration involved a pool party at Park Pool. Now here’s the twist. With a considerable amount of parent lobbying on Josie’s part to the medical team, Keith was granted permission to attend the pool party. While he didn’t actually ‘suit-up’ or get wet he was able to run around with all of his school friends for the first time in, well, a really long time – and without his mask. It was fun for us to watch him bounding about with all of the energy he could muster, which was considerable given he has been pretty sedentary for a quite a while. His friends seemed to accept him back into the fold as though the nightmare of the last 10 months had never happened. Rumor has it that a couple of curious friends asked if they could see his large tummy scar. So Keith, who is not often one to miss an entertainment opportunity happily regaled them, resulting in the expected chorus of ooohhhs and aaaahhhhs.
For nearly 4 hours Keith raced around with his friends outlasting most of the party-goers. Finally, as much as he probably didn’t want to, he admitted he was pretty tired. He said his so-longs to his friends that still remained, negotiated a couple of deals for future play dates and hobbled off reluctantly to the car…..
exhausted but happy.
Keith has always had a proclivity for obsessive streaks (particularly when it comes to entertainment choices) despite our best efforts to mitigate them. For anyone who really knows Keith this comes as no big surprise. This would include everything from Lego’s (way back when) through nearly every imaginable gaming platform and kids TV. His current obsession centers on TV's Cartoon Network, displacing his former compulsive fascination with the Food Network. Despite Josie’s efforts to re-direct Keith’s attention toward other perhaps more enlightening forms of entertainment, this seems to be what captures Keith’s interest right now. I suppose it is a useful form of escape for him, but there sure is a lot of ‘tude in current cartoon programming (with the exception of Spongebob, which is without question the greatest cartoon ever conceived) and it doesn't make for very relaxing background for the grown-ups in the house.
Hmmm. Maybe if the Food Network produced a program featuring an animated Alton Brown we could get Keith to switch his allegiance back to programming the rest of us could actually tolerate…
Keith continues to feel fine and his lab reports have all been solid lately with his ANC and platelet counts all steadily climbing. In preparation for the upcoming study it was determined that his red blood cell count was borderline, so today Josie took him to Children’s Hospital to have a unit of blood transfused. Everything went according to plan and they were in and out quite efficiently as these things go, leaving the remainder of the day free for other activities……
…..like, ah yes, Cartoon Network…..
There’s only one more week left of school for all of Keith’s Wagner Ranch friends. We’re sorry he won’t be able to experience ‘graduation’ from elementary school but with summer vacation just around the corner perhaps Keith can offset any disappointment with more play dates.
While Keith won’t be able to swim for Park Pool this summer, Scott is wearing the Kelley ‘speedo’ torch so to speak. He has been getting himself in shape over the last several weeks by attending evening pre-season practices and today was the time trials meet at the pool, where each swimmer swims every event to establish a baseline time for the upcoming season. His times were quite good and he seems to be enjoying himself to boot. Only one more week of intermediate school for him then it’s off to high school in the fall….o…m…g…
Good news – Keith won’t need to undergo the bone biopsy that was scheduled for Monday, sparing himself yet another uncomfortable procedure and a sore spot as a reminder. Instead we just need to have blood labs drawn in preparation for what we believe will be the commencement of the first course of the clinical trial in a week or so. Keith is in a wonderful frame of mind and does a great job pushing all of the medical stuff aside so that he can enjoy the moment. That’s been his modus operandi from the get go and I see no reason for him to alter this approach.
We received a fat envelope in the mail on Saturday addressed to Keith from the Ronald McDonald House. We though "how nice, they've sent him a t-shirt." Instead, it was full of cards and letters that were never delivered to Keith while he was there. What's with that? So apologies to all who sent him notes of encouragement - he has them now at last...
Finally, late last week Keith's neighbor & friend
If you are a glutton for medical terminology punishment this link to the study brief should do the trick: COG-ANBL0322. As I understand it the basic approach here is to introduce a special monoclonal antibody that is designed to seek out and bond to neural cells and specifically neuroblastoma tumor cells, tagging them in a way that allows the body’s own immune system, enhanced by Interleukin-2 to destroy these cells. Despite the sometimes difficult and frankly unknown side effects of this regimen, it seems to us like the best possible course for Keith right now. This effectively means months of additional treatment with regular inpatient stays at the hospital and many more tests – assuming he responds favorably to the treatment. We are not facing the moral dilemma we would have faced if Keith’s tests all came back clean – that is whether to have put Keith through the misery of a similar clinical trial or essentially to have done nothing and hoped we had done enough. No, the only choice here is to move on to the next treatment option.
Of course it was a difficult conversation to have with Keith and didn’t take long for him to process the implications of this news. It would mean that the carefree days of summer that he had been anticipating and deserving of would probably not happen – at least not this year. His mind raced: What about school in the fall? What about my friends? What about just being normal again? He was angry at us, he was angry at the doctors, and at one point he simply stated that he’d had enough. No more. Enough.
It was a difficult moment for all of us and he of course was right to be upset. Still, after struggling with the severe disappointment of this news he soon composed himself, calmed himself down, processed the options, projected the outcomes and ultimately resigned himself to the necessity of more treatment.
With more guts and courage than I could ever muster Keith said “OK, Whatever. There doesn’t really seem to be a choice.”
OK, the long, relaxing weekend that we had envisioned unfortunately didn’t happen for us. On Saturday Keith complained of a headache and when we checked his temperature it was elevated a bit. Over the course of the next hour it climbed to 100.7º which for you or me isn’t really a big deal but for a high risk patient just coming off a bone marrow transplant it was cause for real concern. So we phoned the on-call physician at Stanford who directed us to head over to the emergency department at Children’s Oakland where Keith was checked over and subsequently checked in for a two night stay (with a view of the bay). He was pretty disappointed as were we all. It's a 48 hour stay minimum while antibiotics are administered and cultures from his central line are evaluated.
In the end, the cultures came back negative and it seemed to resolved by itself. Keith was released mid-day on Monday much to his relief and delight (he even was discharged several hours early). Not interested in hanging around too long lest they change their minds, we raced home to enjoy the remaining half day of the holiday weekend. I suppose the good news in all of this is that whatever bug he had he was able to fight it off pretty much on his own, suggesting that his nascent immune system is at least semi-functional now.
An interesting side-note: Keith has developed into such a ‘foodie’ of late which is both good and bad. The good side is that he really appreciates good food, analyzing it and savoring it. The bad side is he will not consume anything unless one of four simple benchmarks is met: 1: great taste, 2: good texture, 3: interesting, even strong seasonings or, 4: anything Pam makes. Unfortunately that means that a lot of food doesn't measure up and the food at Children’s misses on all four counts so he didn’t really eat much at all for 48 hours. Fortunately dinner at home was more appealing and he wolfed it down, commenting how good it was several times. Josie and I were happy that he was happy but also relieved to see him send some real calories down the hatch.
Keith has taken so many tests lately it’s hard to keep track of them all. Today, however, was finally a test free day - a nice break from the recent streak. Still, there was test ‘news’ today. The result came back for one of the difficult tests Keith was subjected to a while back.
Click here for the Drum Roll
Click here for the
Click here for theTest Result
The tests today went smoothly and without a hitch. In fact Keith caught a break with a sympathetic bone scan technician who was able to convince the CT scan technician to sneak him into a much earlier time slot than we were scheduled for. The end result was that Keith was able to eat as soon as the CT scan was finished which turned out to be mid morning instead of mid afternoon. Food crisis averted....
Beyond that not much to report. Keith agreed to pose for some pictures tonight after telling me a while back that he didn’t like so many pictures of him on the internet. One simply has to respect a request like that, particularly when so much of his difficult year has been laid bare for all to see. So of the twenty or so pictures I took tonight he edited the ones he wanted posted. “You can post one good shot, one ‘evil’ shot, and one of Kirby.” The ‘evil’ shot refers to the 15 or so pictures that he was making grimacing faces. I talked him into posting one of the less gruesome ones....
...despite his objections.
...and the evil ice cream eater watcher.
For Keith it was more or less a routine day with the exception of some more tests around mid-day. All in all he is feeling pretty good right now and has very high spirits despite all the poking and prodding. He isn’t complaining of being sore at the biopsy sites from yesterday which is great – the last time he had pelvic aspirations he hobbled around the house for a couple of days.
After lounging around the house for most of the morning Keith and Josie headed off to CHO for next series of staging tests. The first was a simple Echo, an ultrasound scan to measure his heart function. Easy and quick. The second was a much more difficult pulmonary function test requiring a couple of hours to complete. Lots of hard breathing exercises into tubes and inhaling odd-tasting mists, leaving Keith winded and exhausted when it was finally over.
How Keith felt during his Pulmonary Function Test
Wednesday is the last day of the marathon week of tests for this work-up series. On tap are a bone scan and a full body CT scan. Keith has a lot of practice playing possum so these shouldn’t be too difficult for him except that he can’t eat anything beginning tonight through the end of the final scan sometime in the afternoon.
Food will definitely be on his mind.
With that out of the way, let’s get back to the focus of this blog - Keith. I don’t suppose too many people look forward to surgery – certainly none in our household do. Keith cleverly did everything he could to delay the inevitable like trying to stay up extra late the night before and resisting getting out of bed this morning. Aside from these gestures he offered up little vocal or physical resistance to the inevitable rendezvous with the day hospital at Children’s
In preparation for the possibility of enrolling in an open clinical trial for ongoing therapy, several special lab tests needed to be completed and because this is a rare or possibly unique circumstance for Children’s Oakland they have been working closely with Stanford to coordinate this staging and ‘work up’. This may have been a factor in why it took much longer to get through the procedures today than we had foreseen.
Around mid-day Keith walked down the long hall and into the operating suite under his own power and climbed up onto the procedure table. In an effort to relax everyone including himself he made a point to mention to the doctors not to ‘steal’ his shoes while he was sleeping (we actually did lose his shoes back in August in the ER when he was first admitted). Everyone laughed as he lay down on his side acknowledging permission for the anesthesiologist to do her magic. I watched in fascination as a milky white anesthetic liquid called Propofol coursed its way from the injection site on his IV line and down through the long clear tubing leading to Keith’s chest, finally disappearing beneath the white blanket covering him. It took only a few more seconds for his eyes to tell us that he was in dreamland.
We met up with him as we always do in the recovery room. He took a relatively long time to shake off the effects of the anesthesia but eventually he did and we were back in the car heading home again. Apart from taking his time to wake up this morning, he handled himself with great composure. As usual we were struck by his bravery and mental fortitude.
Not bad for a caveman….
Oh, and thanks for all the comments - it's what makes writing this feel like it's worth the effort.
Josie mentioned to me that some of you may be having trouble trying to leave a comment on this blog. And we would really like to hear from you. What follows is a simple explanation (hopefully)…. Click on the screen-capture image on the left to enlarge it.
At the bottom of each entry following the “Posted by KeithsDad” and time stamp is a link to view and leave comments. It looks something like this: “0 comments” or “1 comments” depending on the number of comments left. Simply click on that link and a new window should open allowing you to read comments by others or to leave your own.
To leave a message, simply type in the “Leave your comment” window. Below the message box in the “Choose an identity” area, click on the appropriate button. If you already have signed up for a Google ID, you should be able to see your screen name - just click that button. If you haven’t signed up, no problem. Simply click the Anonymous button and press “Publish your comment” or the “Preview” button if you want to see what your comment looks like before publishing it. If you are the type that doesn’t want to share your email with Google, go the Anonymous rout. Just try to leave some hint of your name so that we and others can figure out who the comment is from.
Don't be discouraged - once you get used to it you'll find it much easier than CaringBridge to use.
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