Dear Keith

Dear Keith,

You would have squirmed uncomfortably at all of the fuss and you certainly would have rolled your eyes at the use of this descriptor but your memorial service was beautiful. Hundreds of people who were your life-friends and supporters were at the Orinda Community Church to remember all of the things that made you uniquely you. The Rohrer family even flew in from Dubai for the service, winning the farthest-traveled award hands down. Jill, Liz, John and Jack each shared funny and touching remembrances of you, and each from very different perspectives – as a teacher, as a friend, as a coach and as an uncle. Displayed on the altar behind them was a floral arrangement including as a centerpiece the aquarium you always wanted but regrettably never got in real life – sorry about that one.

During the service I couldn’t help imagining you popping out from behind the altar at some opportune moment, flashing all in attendance one of your trademark upside down smiles, then tossing us a quick wave and running off with all of your friends, laughing at the elaborate rouse you had pulled on us over the past year. I would have happily laughed too if only that were the case but the sad reality of why we were all gathered together ruined that fantasy. As I looked down at the program in my hands with your beautiful face on the cover I was struck by how desperately you are missed, and I longed to rewind our lives to the time before cancer when you were healthy - a full life spread out before you just waiting to be explored and played out to its deserved fullness. 

When the service concluded we left the church to the music of Ringo Starr's ‘Octopus’ Garden’ played through the pipe organ. It’s a pretty safe bet that that this was the first time this particular musical selection had ever resonated through the sanctuary, but somehow it seemed fitting for one such as yourself who was always such a lover of sea creatures, particularly ones with tentacles.

In the reception hall following the service the walls were covered with “Dear Keith” notes, touching recollections written by your friends and family along with artwork and posters from your numerous fan clubs over the past year. I say all of this as if you weren’t there, but of course you clearly were there – your presence was tangible – and I can’t imagine anyone in attendance not sensing it.

I hope you liked the sushi...

* * *

So dear Keith, enjoy your new-found freedom and don’t let our sad expressions ever deflate your spirit. Fly to the fabulous places your vivid imagination created and swim alongside the undersea creatures who seem to share a special kinship with your soul. We are forever and indelibly marked by your special time with us. We are eternally linked - you will always be with us…and we will always be with you.

Love always,

Dad

Time

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 9^th 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)

July 15 1996 - August 17 2007

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 Orinda Community Church on Sunday September 9, 2007 at 2pm.

In lieu of flowers the family suggests a contribution to George Mark Children’s House in San Leandro, Comfort for Kids hospice program or a children’s charity of your choice.

We Love You Keith

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.

Breeze

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
Cool appreciation
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

Circle

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.

Day +144: Remarkable...

The work ‘remarkable’ is rolling around in my head as I begin this entry. When looking back at the past week’s events in our house there is nothing that really stands out as ‘remarkable’ in the context that most would use the term. Maybe it is a sad commentary on our lives, but having nothing remarkable happen for over a week is, from the perspective of our context, quite remarkable. To make my point, here are just a few of the remarkable things that Keith did this past week.

• Downed all his pills without complaining (too much).
• Had dinner ‘al-fresco’ at Bo’s Barbeque in Lafayette – (too bad there were so many yellow jackets buzzing our brisket)
• Went to the outdoor farmers’ market and sampled a cappuccino truffle
• ‘Slept over’ with Scott on the family room floor (Fri & Sat)
• Went to the Oakland Zoo with a friend and walked a mile or two on his own – favorites: fruit bat exhibit, the elephants, and the sky tram ride.
• Went into Best Buy to spend some birthday gift money and walked out with 2 new games for the Wii.

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.

Day +136: Getting Back on Track

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!

Day +130: Think Outside the Crust

After planting the seed that we might need to stay through Sunday because of Keith's respiratory problems, the nice folks at Stanford decided to give Keith an early birthday present and let him escape late in the day on Saturday. Keith really rallied on Saturday and his lungs seemed to have cleared nicely with all of the antibiotics he was given. So even though it was about 10 pm when we finally pulled into the driveway in Orinda, our dark house never looked so welcoming and after a good night’s sleep we enjoyed a quiet and pleasant Sunday with Kirby and yes, the Wii.

The downside of being home from Keith's perspective is the massive quantities of pills he needs to swallow each day for the next week or so. Today the tally was 13 large capsules and each one seems to exact an extraordinary mental toll on him. It's always been difficult, but with only a few pills each day it's been manageable. With 13 it's a constant effort. Advice gladly received on this particular subject as we don't seem to get much help from the medical teams.

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.

Day +128: Home Awaits....

We had been hoping that Keith would be home from Stanford by today (Friday) but events conspired against us and he will need to stay at least one more day and possibly longer. It being Friday the 13^th probably didn’t help.

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.

Day +125: Swimming for a Cause

The first day antibody therapy at Stanford seems to have gone well medically speaking. Keith is running a slightly elevated temperature which is an expected reaction but so far no major aches or pains. The construction pace, however, seems to have picked up around here dramatically and the noise in Keith’s room was so loud and persistent it caused more stress and anxiety than the treatment itself.

* * *

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.

Swim-A-Thon Banner

Scott after 212 laps

The next age group readies for their swims

Day +124: Birthday Wii-kend

We celebrated Keith’s birthday over the weekend with the usual trimmings – balloons, cake, presents and even a ‘rat’ hunt. I’ll get to that one in a minute. First let’s start at the beginning…

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.

Day +121: Cephalopoda Birthdaycakeia....

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….

Day +115: Keith and "Gunsmoke". What? you say...

Sorry for posting drought over the past few days. The reality is that there just hasn’t been much newsworthy news lately to report from here, and with the Tahoe fire and Paris H. getting out of jail dominating the headlines, our world is inconsequential by comparison. Actually, we’ve slipped into a rather nice and extended period of ‘normalcy’ (by our standards at least) with only minimal medical meddling consisting essentially of overnight hydration and pill-taking. Keith hasn’t had to step foot into a clinic or a hospital for over two weeks now. In an odd way it almost seems like they’ve forgotten about him but we’re quite ok with that for now.

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 Chester, Matt Dillon’s faithful sidekick of a deputy of Gunsmoke lore, he would even move around like the Keith of old.

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 10^th 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:

Steve Kelley
MKThink
1500 Sansome Street, Roundhouse One
San Francisco, CA 94111

I'll forward any mail contributions to the Swim-A-Thon coordinators at Park Pool

All donations are fully tax deductible as allowed by law. Tax ID# 94-1657474

Day +110: Night Owl

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.

Day +107: Where's the Meat?

“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 Michigan.

Day +103: Picture This

We've had a lot of fun with Annie and Don here the past few days. I snapped a few pictures to share and because Keith has been feeling quite good lately there have been lots of smiles.





















Out for a stroll in the neighborhood




















Keith & Scott preparing to battle.



















Annie showing Scott how to do it.





















Scott laughing at Annie showing Scott how to do it.



















Annie laughing at Scott laughing at Annie showing Scott how to do it.





















Annie laughing...... I think.

Day +101: Scary

“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.

Day +99: One Cone of Silence Please.

For some odd reason Day +99 reminded me of Agent 99 and the whole Get Smart series which was a rich source of entertainment in my earlier days. I got a kick out of all the gadgets which makes me wonder why with all of the high tech gadgets in this hospital we couldn’t get a ‘cone of silence’ here in the room to deal with the ever-present construction noise.

The past two days of treatment have clearly been harder on Keith than the first. Oh, there has been the occasional moment or two when he feels good but for the most part he hasn’t been particularly comfortable. Fever, chills and an overall ‘icky’ feeling quickly follow each 4 hour infusion and the symptoms seem to have become slightly more pronounced with each successive treatment. So we are all pretty relieved that Keith has now completed all three of the antibody infusions for this cycle and should be heading back home again by early afternoon on Friday barring any unforeseen developments.

Annie and Don will be winging there way from Michigan in the morning to spend several days with us. Keith has been looking forward to their arrival for some time and I don’t doubt that it has helped him get through this difficult week. I suppose there is a chance that as we head home from Stanford we might find ourselves driving along side of them as they ride in a shuttle from the airport - now that would be fun…..

Day +97: Anybody for Antibodies?

There are other places we would rather be than back in the hospital, but it’s where we need to be right now and we’re pretty well adjusted to the routine. After so many similar visits there is a rather sad sense of normalcy about the place. We checked in on Monday afternoon and Keith spent a pretty relaxed evening in his room after the usual lab-work and discussion with Dr. Clare Twist about what to expect in the following days. Behind the scenes though I had the distinct sensation that the medical staff were running around furiously in an effort to prepare all of the necessary things that need preparing before the first infusion – double checking everything and making sure all of the nursing staff who would be treating Keith were up to speed on the protocol. There’s an element of “uncharted waters” to this trial as there is with most trials I suppose, but it sort of felt to me like being at the Johnson Space Center on the eve of the first moon shot – a lot of really smart and confident people working on a very delicate problem with no room for error.

To make a long story short, Keith finished his first day of three scheduled days of monoclonal antibody therapy and there is a lot less anxiety in the air now that he successfully tolerated his first infusion and didn’t suffer any major side effects other than a mild fever and a period of very low blood pressure – all of which were controllable. While he was (and is) hooked up to an IV pain med pump that he can activate with the push of a button, he didn’t have to use it at all suggesting that the anticipated pain side effect didn’t really materialize as it apparently does for a lot of the patients. That’s a huge relief – he was pretty comfortable throughout the day even though he was knocked into ‘nap mode’ a couple of times from the meds. While awake, he managed to completely immerse himself into one of his GameBoy games, resulting in a strenuous thumb work-out that probably would have even impressed Chuck Norris.

The doctors were very pleased with the outcome of the day’s events, even commenting that we were in for a boring night.

Hmmm. I’ll take boring.

Day +95: Back for More.

Keith is closing in on Day +100 (100 days from transplant) and that is a milestone of sorts. While there are no guarantees, some of the restrictions he currently must observe should be lifted after the +100 day mark. This might mean less face mask time and more food choices in the future as his body has had time to begin to rebuild a semblance of an immune system again.

After Keith's strenuous activities at the pool on Friday followed by a sleep-over that night at our house with Scott and Scott’s friend Trevor, he slept in until noon on Saturday. But with his batteries recharged he had another friend over to play in the afternoon. Sunday turned out to be a quiet day at home despite Keith's multiple requests for more friends to come over and play.

Alas, we are off to Stanford on Monday to begin Keith’s first round of monoclonal antibody therapy. He will be admitted sometime in the afternoon for the usual pre-treatment regimen with the actual treatment beginning on Tuesday. The treatment consists of a four hour infusion repeated each day for 3 days. If all goes well Keith should be discharged Friday or Saturday. The next cycle would commence one month hence if he tolerates the treatment and the treatment has a positive effect on his residual disease. As far as we can tell only 30 other patients nationwide have participated in this particular study to date and so the the medical team is carefully preparing for Keith’s arrival and care.

It has been very rewarding to see Keith begin to re-engage with his friends and become more physically active. So it is emotionally hard for us to send him back for more difficult treatment when he appears to be feeling so well at the moment. We are keeping our fingers crossed that this next round of therapy will be very effective medically. But we are also hoping that he can continue to feel well enough between treatments to enjoy the summer ahead and spend time with his friends just being a regular kid.

We'll see.

Day +93: School's Out

Today was the last school day for kids in the Orinda Union School District, and probably for a good part of the rest of the nation as well. For Scott, this was also his last official day of Orinda Intermediate School culminating in a ‘promotion’ ceremony yesterday evening and a fun class trip to a bay area theme park today to cap off the school’s BMOC festivities before heading off to be lowly freshmen in high school next fall.

Of course this was the last day of school for Keith’s 5^th 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.

Day +90: Mr. Obsessive Compulsive

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…..

Day +88: A Good Weekend

Keith enjoyed a nice weekend. He’s been feeling really good lately and better still, he was able to have several of his friends over to the house to play. We even acquiesced to his request for a sleepover with a friend Saturday night. It was a lot of fun for him, made even better by having Scott hang with them.

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 Chad knocked on our door and presented Keith with yet another art project that the 5^th graders created for him. It was a fired clay fish decorated with the patterns borrowed from of one of Keith’s abstract art projects he did at the hospital a while back that I posted on the April 17^th entry. We are so grateful to Mrs. Kam, Wagner Ranch’s art teacher, for the many times she has cheered Keith up with art projects that she and her class have done for him.

Day +85: "OK, Whatever..."

The lack of recent posts is not for lack of news, although I wish that were the case. The last few days have been a whirlwind of activity and they've also been some of the most difficult we have had to face in this journey so far. I usually don’t spend a lot of time trying to compose these posts, but this was a difficult one and after several re-reads I still don't feel I got it quite right. It seems the winds have changed once again.

To set the stage a bit we have been discussing with Keith’s doctors the options for follow-up treatment now that he has completed the usual protocol for his type of cancer and staging. With a clean series of current tests showing no evidence of disease (NED) or minimal residual disease (MRD) the standard of care is to administer a drug called 13-cis-RA or high dose vitamin A that is primarily used in cancer treatment to mop up the few lingering tumor cells that could still be lurking about. This treatment would last for approximately 6 months but is easily administered at home with a pill and under such a plan Keith could pretty much go about gradually resuming normal activities.

So to complete the overall picture and bring you up to date, Keith finished the usual series of standard ‘work-up’ tests beginning on the 17^th through the 23^rd of May and these diagnostics included a bone scan, a CT scan, a heart echo, a pulmonary function test, a MIBG scan, and a pelvic bone marrow aspirate & biopsy. The results of all these tests looked encouraging – that is all except one. The MIBG suggested that there were a couple of ‘hot spots’ that were cause for concern and required additional testing. So last Friday Keith returned to Stanford to have an MRI scan. We learned yesterday that the results of MRI seem to confirm the MIBG finding which is to say that his cancer apparently either has not cleared completely or has relapsed.

Obviously, this changes things.

We met yesterday with an orthopedic surgeon to discuss a bone biopsy at one of the spots indicated in the scan. It’s not completely clear right now whether the biopsy is absolutely necessary but if it is the procedure will happen next Monday sometime. In the meantime Keith’s physician team at Stanford is working quickly to confirm his eligibility to enroll in a phase II clinical trial. Further chemotherapy is not considered an effective treatment option anymore.

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.”

Day +82: The Half Day Holiday

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.

If we could just keep him home for a while I know we could expand his waistline a bit.

Day +79: Holiday Weekend

Conflicted as I am about this, Josie encouraged me to take the weekend off. This means that with no entry this weekend, this will mark the first time in the 292 days since Keith was diagnosed without a nightly post. I suppose all streaks must come to an end sometime.

I'll catch everyone up on Keith's doings on Tuesday. Have a great holiday weekend.

Day +78: Test Result

I think Keith really enjoyed his day today. He more or less got to move at his own leisurely pace (which is to say is more tortoise-like than hare-like) and he really seemed to be feeling quite good judging by his good appetite and unique sense of humor.

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 Test Result

Day +77: Picture Day

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.

The evil ice cream eater...

...and the evil ice cream eater watcher.

Day +76: Inhale

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.