Sunday, July 29, 2007

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.

Saturday, July 21, 2007

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!

Sunday, July 15, 2007

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.

Friday, July 13, 2007

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 13th 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.

Tuesday, July 10, 2007

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

Monday, July 9, 2007

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.

Friday, July 6, 2007

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….