Wednesday, February 21, 2007

February 21st - 26th: "I Really Don't Like Wednesdays."


Parent’s Note:

When Keith got out of bed this morning the first thing he did (after donning his red bathrobe) was to sidle out to the family room where Josie was enjoying her morning coffee along with the rest of us. He declared his wish that she have a happy birthday in a clear, loud voice, and gave her a protracted hug. Of all the birthday wishes she received, this one had to be the most special. Not a bad way to start the day when you're the birthday mom.

Josie had planned to enjoy a birthday lunch with a friend, but instead the day spiraled out of control becoming one of those reminders that there are few certainties in life, especially when it comes to medical treatment. She picked up the call from Children’s Hospital just as she was heading out the door. It seems that one of the pulmonary function tests Keith had performed last week would need to be repeated.

“Could Keith come in on Thursday?”

Realizing that Keith would be disappointed, Josie replied that it would be ok if it was absolutely necessary.

“And even though his hemoglobin is at 10 now, we want it to be higher for the test. So we need you to come in for a transfusion today. Can you come in right now?”

Sigh…. Josie tried to explain that this was kind of short notice and she had plans today but it didn’t take much more discussion before she resigned to the reality that her birthday lunch plans would just have to wait for another day.


Keith and Josie got themselves to the hospital, but there was no room at the inn, so to speak. The day clinic was completely full and they were directed to the inpatient center across the street. After many visits, we have observed that everything takes much longer in an inpatient setting, so what would have been a 3-hour visit to the clinic became a 6-hour visit to the inpatient center.

Apparently word that it was Josie’s birthday spread through the hospital and many familiar faces from the nursing staff stopped by the room to wish Josie well. Later in the afternoon I stopped by the room where Keith was keeping himself occupied with his laptop computer. At one point Keith said “I really don’t like Wednesdays. I’ve always had a grudge for Wednesdays.” I wasn’t sure that I really wanted to pursue this topic much further but I asked him why he felt that way. “Because bad things always seem to happen on Wednesdays.”

Sure enough, in looking back at the journal he was right. August 9, 2006 was a Wednesday. It was the worst possible day, the day he was first admitted to Children’s and began a series of scary tests that confirmed something was very wrong with Keith. A week later, August 16th was also a Wednesday – the day he developed acute respiratory distress syndrome following his first course of chemotherapy and was transferred to the pediatric ICU – we came very close to losing him that night. The first Wednesday in January he underwent bone marrow harvest surgery and now the surprise and disappointment of today’s news. Sure, he’s had plenty of good Wednesdays as well, but interesting he would make the observation.

He finally got his transfusion and by 6:30pm they were home again where we celebrated Josie’s birthday with Bo’s barbeque and home made pie.

So a good start and a good finish to a day that otherwise followed course of its own.


Parent’s Note:

Keith made another appearance today at Children’s Hospital to re-take one of the pulmonary function tests. Apparently the doctors down at Lucile Packard didn’t like the results from the first effort. So armed with a full complement of red blood cells and his hemoglobin up to 11.9 he tried again. This time he literally ‘blew away’ his previous results, making the respiratory therapist quite happy. Our assumption is that the doctors at Lucile Packard will be quite happy too.

Speaking of happy doctors at Lucile Packard, Dr. Twist reviewed Keith’s latest MIBG scans and word is that she was exactly that – quite happy with what the images show.

Has anyone noticed the visitor count on this website has crossed 30,000 visits.

Wow. (not to be confused with WoW) -_-

FRIDAY, FEBRUARY 23, 2007 10:12 PM, PST

Parent’s Note:

A fine day by Keith’s standards. No medical anything. Just some quiet time mixed in with a little schoolwork and a trip to the ice cream parlor for a custom sundae (we’ll call it “The Keithanator”): vanilla and chocolate marble swirl with hot fudge, malt and a cherry.

Keith has gained some much-needed weight lately, thanks to a good appetite (including sundaes) and a reprieve from chemo. Amazingly, he has recovered to the weight he was about a year ago, and while that might not sound impressive, when you consider all he and his body have been through it actually is.

On the downside, he now has lost some high frequency hearing most likely due to the chemotherapy. He cannot hear the sound of the electronic “beep-beep-beep” of the digital thermometer when it alarms a few inches from his ears. Thankfully his normal hearing range seems to be unaffected and hopefully it won’t worsen with time.

In the big picture of things it seems pretty minor.


Parent’s Note:

Keith enjoyed a mostly quiet day today. The one exception being that we ventured to Oakland to enjoy dinner with our friends Pam and Bob. To say Pam is a great cook is a classic understatement and tonight we were treated to crab cakes and an amazing bouillabaisse. Keith really enjoyed the crab cakes and made a valiant attempt to consume the bouillabaisse even though he had a hard time eating some of sea life he has come to recognize as his friends. To the rest of us it was absolutely amazing.

Rain is forecast for the next several days so I suspect we will remain close to home between now and Tuesday when Keith is admitted to Lucile Packard Children’s Hospital. He is feeling great now and we are enjoying it while it lasts.

SUNDAY, FEBRUARY 25, 2007 10:37 PM, PST

Parent’s Note:

Keith gets to enjoy one more day at home before he must say goodbye to Kirby and relocate to Palo Alto for his autologous bone marrow transplant. After he is admitted on Tuesday it will probably be at least two months before he can return to Orinda and once again stroke Kirby’s fur and crawl into his own bed. So for us it is a bittersweet moment knowing that this will be a very long and difficult period for Keith (and all of us). At the same time we are looking forward to it because it is this procedure, despite its risks and unpleasantness offers the best chance to eliminate his cancer once and for all.

Later in the week I’ll try to share with everyone more of the details of the procedure as we know them. In preparation for the transplant we have been collecting all the things we will need to make Keith’s life as enjoyable as it can be – photos of Kirby, games, books and favorite things of all sorts. Everything that enters Keith’s room will need to be ‘clean’ (germ free) because his immune system will be completely out of commission for a very long period of time. Because keeping him in a germ-free environment is important to his recovery there will be restrictions on what actually enters his room – from food to people. He will essentially be isolated in his positive pressured, HEPA filtered room for 30 days minimum without being able to step a foot outside the room.

We think we have sorted out the major logistical issues of the next month. Josie and I will trade off staying with Keith days and nights. We are fortunate to have found a small garden apartment in Portola Valley where the other parent can spend the night when needed. As for Scott, he will be able to visit Keith on the weekends while he stays in Orinda with his grandparents while they are with us for a couple more weeks.


In other news, Scott just turned 14!. Ok, well his actual birthday isn’t for a few more days, but given our situation we thought it best to celebrate it today while we were all under one roof.



MONDAY, FEBRUARY 26, 2007 08:37 PM, PST

Parent’s Note:

Keith is in a very good mindset right now (as has been the case all along) and realizes this is the last night at home for a while. He has a great way of partitioning himself from things that are unpleasant and he tends to live in the present, very much enjoying himself when he feels ok like he did tonight and over the past few weeks. Tonight we brought home Indian food, one of Keith’s favorites, and he enjoyed mopping up the Tika Masala sauce with his nan bread while uttering the 'mmmmmm' sound.

We very much appreciate all of your thoughts and prayers as Keith heads to Stanford to start his BMT. We’ve done everything we can think of to prepare for this venture and we are as ready as we can and ever will be.

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