Thursday, May 31, 2007

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 17th through the 23rd 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.”

Monday, May 28, 2007

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.

Friday, May 25, 2007

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.

Thursday, May 24, 2007

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

Wednesday, May 23, 2007

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.

Tuesday, May 22, 2007

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.

Monday, May 21, 2007

Day +75: An Apology to Cavemen

In reading the abundant comments from last night's post I feel I must right a wrong. I surely didn’t mean my entry to be interpreted as it was, demeaning and condescending to a segment of society that already suffers the pains and indignities of relentless prejudice and stigmatization. So an apology is in order. I sincerely regret any slights that may have inadvertently been cast through this forum. From this point forward I shall do my best to foster an unbiased understanding of this all-too-often misunderstood and undervalued segment of our population – Cavemen.

C’mon, let’s give ‘em a break.

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 Oakland. We arrived at the appointed hour for his physical exam and blood draw but found ourselves sitting in the waiting area longer than Keith was able to endure with his respirator mask on. Finally we asked if we could wait in an exam room instead and, sure enough, we were led into one pronto. Doh! - Why didn’t we ask sooner? Once Keith was able to remove his mask and breathe again he felt much better.

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.

Sunday, May 20, 2007

Day +74: No Comment

Keith enjoyed a stress free weekend made fun by having a friend from school visit each day. He’s in good spirits even though he knows that come Monday he's in for a surgical procedure to perform yet another bilateral pelvic puncture to sample his bone marrow. I still find remarkable his ability to block out unpleasant things allowing him to better enjoy the present moment. It is certainly a trait he did not inherit from me but one that has made all of the difficult treatments more tolerable for him.

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 “

Saturday, May 19, 2007

Day +73: Garlic Bread

Around mid day Keith pronounced that he would really like some garlic bread. “Do you have any?” he asked. Josie told him we didn’t have any just laying around but we could make some if he wanted. Since she looked busy, I asked Keith if he would like me to make some and he responded diplomatically “No, that’s ok. You probably don’t know how to do it.”

Well, not one to walk away from a challenge I said “Sure I do – and you’ll like it.” So I got to work and Keith soon walked over to the kitchen to inspect what I was doing. My plan was to press fresh garlic and add it to some melted butter then spread it on a hoagie roll and place it under the broiler. He opened up the spice drawer and pulled out some garlic powder and ground chipotle pepper. “Just plain garlic and butter won’t do it.” he said.

So the butter & garlic slurry was augmented with the spices Keith selected. After it was broiled and the house smelled like an Italian bistro, Keith sat down at the counter and bit into the first slice. “Mmmm. This is really good.” He continued, “To cook requires mixing a variety of seasonings to balance the flavors and really make it exquisite.”

Oh really? I felt like I had just been reprimanded by Mario Batalli but it didn’t matter. He was happy and the garlic bread was good. Besides, I think I learned a thing or two about cooking garlic bread.

Friday, May 18, 2007

Day +72: Eddie?

More MIBG scans today, closely paralleling yesterday’s sequence of events including a long 40 minute scan plus a couple of shorter ones. I think Keith and Josie are happy to be done with this series and are looking forward to a stress-free weekend.

We were warned that when Keith’s hair starts to come back it may look a little different than it did before he lost it. Well, of late it has really been filling in and he has developed eyebrows, eyelashes, a thick head of short dark hair and a distinctive widow's peak.

He is really beginning to look like his old self again, but he reminds me of someone else….I just can't quite put my finger on it.....

Thursday, May 17, 2007

Day +71: Early Bird Special

It was down to Stanford for the MIBG appointment today. Keith did his job and held still for three separate scans – two forty minute scans and a twenty minute scan. Josie did her job getting him there and providing moral support during the long imaging session. Then it was to the clinic for lab draws and eventually back to the car for the northbound return trip around mid-day. He was a trooper as usual and because he did such a good job today he gets to do it all over again on Friday.

Well sort of - this time only one short scan is needed and a mid-day appointment means he gets to sleep in a little.

Wednesday, May 16, 2007

Day +70: Hey, I'm Radioactive!

Keith continues to feel well and has resumed his pre-BMT computer interest- or perhaps put more accurately - obsession. It's just another indicator that he is feeling like his old self again. On other fronts, he seems to be eating ok but he wouldn’t be much of a contender in a pie eating contest right now. What I mean to say is that he doesn’t have a ravenous appetite. Still, today he ate a good breakfast and dinner - lunch didn’t really happen today, however. So his caloric intake seems to be just enough to 'maintain' right now and we are curious what his weight will be when he stands on the scale at his next clinic visit. As far as drinking goes, he isn’t consuming very much, but he has never been a huge drinker. He basically drinks slightly more than what he needs to get the pills down and if it weren’t for our continuous prodding he wouldn’t drink even that much. So the overnight hydration he is receiving is helping immensely to keep him going right now.

As planned Keith received his radio-isotope injection at Stanford and will return again Thursday for the first of two MIBG scans. The second scan will happen on Friday. So for the next couple fo days he's ever-so-slightly radioactive. Josie is planning to be on the road at 6:15 am to make the early appointment; just another seemingly insignificant addition to the rolling, 5-lane wide metallic river of southbound traffic.

Ahhhh…… what a relaxing way to start the day….

Tuesday, May 15, 2007

Day +69: Metaiodobenzylguanidine Anyone?

It’s back to Stanford tomorrow for some scheduled outpatient procedures. Keith will report to the nuclear medicine department and receive a radio-isotope injection for MIBG scans planned for Thursday and Friday. So this begins the first day of a solid week of tests for Keith extending all the way through next Wednesday intended to complete a full ‘work-up’ of his current condition. The results of these imaging tests will guide what next steps we will take and will determine in particular whether Keith is eligible to enroll in a promising but challenging phase III immunotherapy trial.

It will be a long week ahead but at least we get to sleep at home.

Monday, May 14, 2007

Day +68: Germ Warfare

The last time we had to draw Keith’s labs ourselves was back in February, so it took a little dusting off of the mental manual for us to recall all the proper steps and sequences required. But we managed to disconnect his overnight fluid line, collect the two vials of blood, change his catheter caps and flush his lines without incident. All before 8am. We have been extra careful to make sure we don’t introduce Keith to any unwanted germs and so we seem to be tearing through alcohol wipes almost as fast as Keith can tear through a deck of Pokemon cards.

We have been encouraging Keith to get outside each day and stretch his legs. Short walks up and down our street seem to be just about right for him and he can even do it without wearing his mask as long as there are no signs of landscaping activities going on in the area as that apparently stirs up the ever present mold spores. Airborne mold spores are not welcome critters right now.

Keith was relieved to have only six pills to take today instead of the eleven required over the weekend days. He responded by eating much better today and even helped with dinner preparation by selecting a handful of spices (cayenne, garlic powder, pepper and worcestershire) to kick up the pasta sauce a bit. After tasting the results he nodded his head vigorously to indicate his approval. It was indeed very good…..

Sunday, May 13, 2007

Day +67: Pill, pill, pill, pill, pill, pill, pill, pill, pill, pill, pill

Weekends are always great and something we look forward to. Weekend days mean time home as a family together and lots of brother-on-brother time. Keith and Scott had a sleep-over of sorts in the family room. While it’s not quite like having a school friend over it is fun just the same for Keith. Scott continued his brotherly good deed-doing, playing Pokemon cards at Keith's request for a good part of the day.

Weekends do have downsides though – I can think of eleven of them. Keith is required to take five additional pills each weekend day for a total of eleven on Saturday and eleven on Sunday. While it seems like a lot for anybody, it still should be manageable. What makes it difficult for Keith is that he seems to need at least a half an hour between each pill to settle his stomach and that makes it a day-long, constant effort. For some reason it hasn’t gotten any easier for him as time has passed even with all the pill swallowing practice. Worse, pill swallowing seems to drain his appetite and so the past two days have not been great eating days for Keith despite all the good food lying around the house.

As Monday’s go, this Monday should be an easy one for Keith and with 5 fewer pills to take it should be a ‘Good Eats’ day as well….

Saturday, May 12, 2007

Day +66: Brainmon

Keith rediscovered his Pokemon cards today.

After 2 years sitting in boxes on shelves in his bedroom, Keith honed in on them and spent the entire day sorting, classifying, grouping, studying, and playing with them. All billion of them.

I challenged him to a pop quiz from a Pokemon handbook that he had been reading. “What Pokemon is totally covered with non-flammable fur so it can withstand ANY flame attack?” I asked. “That’s a Quilava” he responded.

Impressed, I scoured the book for what seemed like a tricky question. “What Pokemon has rings on its body that begin to glow when darkness falls?" I challenged. “That’s an Umbreon” he shot back. And so on…..

I keep forgetting. I merely read books. He memorizes them.

Friday, May 11, 2007

Day +65: Go Ahead, Make My Day....

It was a routine day with few medical overtones except for the usual pills and overnight infusion. Without question, the highlight of the day for Keith occurred after he finished his schoolwork here at the house with his teacher Mrs. Morris. They both rolled up their sleeves and worked together in the kitchen making a fantastic spicy chicken curry for our dinner. Keith was very excited and could hardly wait for all of us to try it. He was rightfully proud of his effort as he should have been - It made our day.

Better still, he ate a big helping of it….

If you click on the photo, you should be able to see a few of his survivor hairs - stalwart legacies of his shaggy mane prior to all of his chemo...

Thursday, May 10, 2007

Day +64: That Sunny Feelin'

While we were packing up on Tuesday, Keith surprised us with yet another metallic sunburst – this one twice as large as the one he proudly presented to us a few days back and more carefully crafted. I guess like all good artists he prepared a mockup prior to creating his Pièce de résistance. I can't help but think that he must be feeling pretty good right now to create something so happy and cheerful looking.

Josie and I met with one of Keith’s oncologists today to discuss the potential of participating in a phase III clinical trial aimed at improving outcomes beyond the standard protocol that Keith has just finished. At this point we don’t know whether he will be eligible or not and there are a few questions we have that still need to be answered before we will know for sure. More updates on this topic later.

Keith (and we) did a better job of staggering his medicine today instead of lumping it all toward the end of day when he is tired and less receptive. He also continues to feel very well and his appetite is improving slowly but surely as evidenced by his consumption of a big ice cream sundae smothered with Sharffen Berger chocolate sauce that he acquired at the factory tour a while back…. Yum.

Wednesday, May 9, 2007

Day +63: The Pill Predicament

Keith enjoyed his first full day home the way a plant enjoys water – he sucked it up. It wasn’t all fun and games however as the text books did come out in an effort to make a dent in all of the schoolwork he has missed over the past couple of months. He admitted that even though it wasn’t as fun as watching cartoons he really enjoyed seeing his teacher Mrs. Morris again after such a long stay in Palo Alto.

Looking ahead Keith will need to complete a series of standard diagnostic tests that comprise what is called a ‘work-up’ to determine his new baseline as treatment has progressed to this point. These are all tests he has undergone several times before but that doesn’t mean they’re fun. Next week he will need to be at Stanford’s nuclear medicine department on three consecutive days for MIBG scans followed shortly after by a bone scan, CT scan and bi-lateral bone marrow aspirates and biopsies all performed at Children’s Hospital Oakland. Many of these procedures require him to be NPO (fasting) for a period of time before the procedure making it a bit more challenging for him to maintain his caloric intake. These ‘work-ups’ apparently will need to occur every three months or so for quite some time.

We are administering overnight hydration for him and that seems to be working very well – he just isn’t a big drinker so getting 750ccs of hydration while he is sleeping goes a long way. Keith now needs to take several medications orally on a daily basis with a couple of extra pills twice weekly. I wish I could say that it is a non-issue, but he is still very particular about what goes into his mouth and until they make pills taste like John Cross Fisheries Whitefish Spread he will continue to put up considerable resistance, making it difficult for everyone involved. He is quite able to swallow pills but he needs to psych himself up to do so and then needs 30 minutes to ‘recover’ before he is ready for the next one. With so many pills to give him now, we realized tonight that waiting until just before bedtime was probably not such a great idea.

We are in a monitoring & maintenance phase right now but will soon discuss with our doctors follow-up regimens that they will recommend depending on the results of Keith’s latest work-up.

Stay tuned…

Tuesday, May 8, 2007

Day +62: Home Again

No surprises, no suspense. Everything went off without a hitch today despite our latent fears that someone would tell us that we would need to stay for one reason or another. To our relief, we completed our appointments at the hospital and cleared out before they changed their minds. Then we cleared out our room at Ronald McDonald House, said goodbye to the guy with the big shoes and red hair who has been sitting motionless on a bench in the courtyard behind our room for the entire duration of our stay, and headed north. I split off toward the office while Josie & Keith headed for Orinda where a very fine welcome home banner crafted by our neighbors awaited.

I did not witness the actual much-anticipated reunion of cat and human but I can imagine that both were quite pleased to see each other. In fact Josie mentioned that Keith, after petting Kirby for a while, looked up and proclaimed "This is even better than I thought it would be."

It goes without saying, but I’ll say it anyway….. It’s great to have Keith home again.

Monday, May 7, 2007

Day +61: Packing Day

Well, the final session of radiation treatment for Keith is now in the books. Add to that his successful completion of the Bone Marrow Transplant procedure and I’d say Keith has earned a little well-deserved time off along with a merit badge and a courage bead or two.

Today is packing day, tomorrow is moving day and move is exactly what we plan to do after he attends school for one final session. Meanwhile Josie and I will go over discharge instructions then pack up the car(s) and head back home. Hopefully we can negotiate this in only one trip - we have accumulated a lot of stuff over the past couple of months in our home(s) away from home.

Despite all of the recent radiation Keith has been able to maintain pretty solid blood counts and still has a decent ANC. It’s been quite a while since he has had a transfusion or a GCSF boost which tells us that his bone marrow is doing a great job on its own. Once home, Keith will technically still be in isolation and it probably will be that way for quite some time. Inside our house he will not need to wear his mask, but if he ventures anywhere else then it’s mask time. Of course he can’t just go anywhere he pleases either. We’ve recently learned that even while wearing his mask he will be prohibited from going to places like the grocery store, movie theater, school or even a friend’s house. And forget public transportation. It’s just not safe out there with rogue gangs of mold spores lurking around. Having a friend over to our house is possible (as long as they aren’t moldy….) so it’s not as cruel as it could be.

Sunday, May 6, 2007

Day +60: The Anticipated Nod

I've noticed for some time now that Mondays have this habit of following pleasant weekends. And so once again, and quite possibly for the last time, Keith will visit the clinic for his usual physical and labs followed later by his final radiation treatment. Unless something wildly unexpected happens we expect to get discharge instructions and after that, the most anticipated nod ever; the nod to return to Orinda sometime on Tuesday. There will certainly be more tests needed to establish Keith’s current state of disease, or hopefully lack thereof, including a series of outpatient visits back at Stanford a week following discharge for a couple of MIBG scans. The remaining tests should be able to be handed off to Children’s Hospital Oakland again, making life a bit more convenient for us.

It was a very quiet weekend at the RM House. In fact we were the only family in the 6 unit immune wing so we had the whole place to ourselves. We managed to coax Keith into gearing up with his mask and headed outside on this beautiful day to kick a ball around the yard. I expected him to hobble around and be quickly winded, but he would have none of that – racing around, kicking the ball and rolling in the grass instead. Except for the very short haircut and the pink mask he seemed in every respect just a regular kid. On several occasions I even heard the sound of muffled laughter trying to escape from behind that oversized respirator clamped to his head.

To our friends Kristi and Chuck we owe special thanks. Without even knowing us beforehand, they offered the cottage of their beautiful home in Portola Valley to us ‘sight unseen’ to use during the past two months so that we could maintain a semblance of family unity during Keith’s difficult treatment. During Keith’s hospital stay only one parent was allowed to sleep in Keith’s room so the cottage became a key part of the infrastructure that enabled us to both stay nearby and support Keith. Also, having Scott able to spend weekends with Keith was only made possible by having access to the cottage. Keith adores his big brother and having him able to stay nearby so that he could spend more time with Keith was a huge uplift to his spirits. A very generous and much appreciated gesture by a truly wonderful family.

Scott and I are now back in Orinda where in less than 48 hours we should be joined by Josie and the man himself. That would make four Kelley’s and a one pudgy cat all under a single roof again….

Saturday, May 5, 2007

Day +59: Scott Returns

“When I grow up, and if I decide to open a pizza store, I will make my pizzas with a thick crust and the dough will have corn meal and honey in it and it will be sooooo good.” Keith reacting to the thin cracker crust of the pizza we had for dinner tonight.

Josie and Scott arrived here at RM House mid-day after a morning of building anticipation by Keith. After all, he hadn’t seen his big brother for two weeks because Scott came down with a cold last week. Needless to say, Keith really enjoyed having a little big brother attention today.

Note: Click the image to see Keith's Chia Pet head...It's starting to sprout big time....

Friday, May 4, 2007

Day +58: Puzzling....

“Gwkki, rgua ua Jwurg. Vkywvweet ouw ua fiis.”

Keith keyed in the coded phrase above. For you puzzlers out there, he thought you might enjoy trying to de-code it. Josie has the night off and headed back to Orinda so it’s just the two of us spending the night at RM House tonight.

Following yesterday’s math-focused curriculum, it was art day at school today and Keith forged this cool starburst out of a solid sheet of metal (ok, foil). I like art days almost as much as Keith does because there is usually a fun picture to post. Not that math isn’t fun as well, it’s just that posting an image of some long, complex algebraic equation just isn’t quite as visually interesting as a photo of his artwork.

Fiis bufgr.

Thursday, May 3, 2007

Day +57: T-Minus 4 Days & Counting.....

I hadn’t seen Keith (or Josie) since last Sunday but was able to swing by RM House this morning on the way to an early meeting nearby. Keith looked great and had a sparkle in his eye the size of Texa…eh, make that California. Yep, he knows that he gets to go home soon.

Only two more days of radiation left – Friday followed by next Monday and that’s it! It's official now - no more quiet whispers behind the nurse's station - there are definitely plans in the works to clear us out of Palo Alto and send us back home on Tuesday of next week.

Oh, yeah... How 'bout those Warriors? Yes, the stars are lining up....

Wednesday, May 2, 2007

Day +56: Negotiation 101

Keith really wanted to go to school this morning because it was ‘science day’ and he really enjoys the science day projects that they come up with (after all, they have a lot of pretty cool equipment and technology nearby….). Anyway, his body just couldn’t manage it this morning. He finally felt up to going to school later in the afternoon but knowing that science was no longer being offered, he pleaded not to have to get stuck doing just math. Well, that’s exactly what he wound up doing, but he managed to strike a deal that would allow him to join the ‘acting class’ once he finished cranking out some math problems. And so that’s what he did. Maybe he could teach a class in negotiation...

We are told that the fatigue associated with his radiation treatment will last for at least a couple of weeks after the final treatment is complete on Monday. That makes a lot of sense when you think about what his body is being subjected to, but we simply hadn’t realized the procedure was so potent and that it would take quite so long for him to recover.

Apart from his stunted energy level, he is feeling quite good and still eating well. It appears that the doctors may even discontinue his overnight nutrition (TPN) and lipids starting this weekend – all in preparation for Keith to make his great escape for Orinda.

Don't ask.... I just thought it was funny

Tuesday, May 1, 2007

Day +55: More of the Same

The routine has been the same for quite some time now and you probably know the daily drill so I’ll keep it very short today. Keith did indeed receive another batch of platelets as was predicted, but this was his first visit to Packard’s brand new temporary day hospital. It is good to know that all of that construction noise he endured resulted in something (although there is a lot more work still going on).

Keith managed to muster a bit more pep today than yesterday, evidenced by his attending school for a while. He has knocked off eight radiation sessions now and has only four more to go. Beyond that not much to report.

He’s heading down the home stretch.