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.