Sunday, September 17, 2006

September 17th - 23rd: Make-a-Wish Pays a Visit

SUNDAY, SEPTEMBER 17, 2006 09:56 PM, PDT

Parent’s Note:

No big news today but that’s ok with us – mostly just time at home highlighted by a couple of activities that Keith engaged in. He played a little ping-pong on the back patio (actually he whipped his mom, commenting that she had to amp up her serve a little if she really wanted to have a chance against him in the future). The other highlights consisted of him helping to bake (and eat) a chocolate Texas sheet cake and us dragging his drum set out of the garage and into our living room (of all places) where he promptly serenaded the neighborhood with an improvisational percussion jam session. While not specifically on his list of physical therapy exercises, we figured this had to be good for him.

Scott’s cold seems to have waned and he has been enjoying water polo at Park Pool. So far we seem to have escaped handing Keith an infection while he has been at home (knock on secondary xylem of trees and shrubs, lying beneath the bark and consisting largely of cellulose and lignin). We fully expect he will continue to feel well for the duration, and expect that his blood counts will rise back to acceptable levels sometime soon.

The real news will come later this week. We have several activities planned in addition to the usual lab drop-offs. This will be Keith’s last full week at home before being re-admitted to the hospital for his third round of chemo. We have an initial consultation meeting to go over Keith’s upcoming stem cell transplant procedure currently planned between his 3rd and 4th courses of chemo. Also, we are all scheduled to get flu shots and Keith is scheduled for another CT scan later in the week before we finally report for duty at Children's Hospital next Sunday.

On the more pleasant side, a representative from the Make-A-Wish Foundation will stop by to talk to Keith about what he might like to look forward to when his doctors say he is able. "If you could wish for anything . . .what would it be?" is the question that begins the conversation. I hope he wishes

for something that makes him very happy and that looking forward to it makes his journey more tolerable.

I have a wish as well, but I don’t think they have anything in their bag that will fix it…

MONDAY, SEPTEMBER 18, 2006 09:01 PM, PDT

Parent’s Note:

I’m struggling to come up with any real information to fill this journal entry tonight, but I also feel compelled to keep up with daily updates for now. I could weave a long yarn or two but I think I’ll keep it short.

Keith continues to feel well and is in no apparent discomfort now. The chemo is still having lingering effects on his digestive track but nothing a little laxative can’t handle. Because he is naturally skinny I find myself compelled to ‘fatten’ him up while he does feel good so a large chocolate malt is headed his way after I finish this entry.

More substantive news should be on tap for tomorrow after we speak with the transplant doctors. Apologies for the lame space filler tonight.

Due to severe space problems associated with the unexpectedly large quantities of mayonnaise bottles that have accumulated on our porch in recent days in response to the ANC quiz from a few days back, management will consider answers submitted in spice bottles as well.



“Oh great, let’s see….I want to go to Gepetto’s for breakfast.”

Keith's response, when asked what he would like to do now that he could leave the house without a mask

Parent’s Note:

Later, while enjoying that apple turnover at Gepetto’s, our favorite local cafe, Keith asked if he could come back later in the day for lunch…..Of course there was only one possible answer – yes!

The main theme of this journal entry is that we received a great lab report today. Keith passed with flying colors as his ANC skyrocketed from zip to ‘man of steel’ levels in only the past few days. The doctors gave him that coveted carte blanche wink to go out and enjoy life without covering up his nice little smile with a mask.

I’ll spare you having to calculate his ANC as you are all experts by now. So to cut right to the data his ANC was an enviable 7,810 (remember, he was 50 last Thursday)! His WBC improved just ever-so-slightly from 200 to 11,000! Hemoglobin up from 6.8 to 9.6 (ok, so he had a transfusion but who’s looking). Platelets more than doubled from 66,000 to 130,000. You get the picture. He’s standing on top of the Millau Viaduct again. He could enter the X-games now if he just could perfect that backside double kickflip. Short of that, he can at least get on BART.

Of course this news made him quite happy and of course as parents if he’s happy, it goes without saying we’re ecstatic. We really admire how maturely he has been able to understand the rhythms of his therapy and to do what he needs to do when he needs to do it without fighting the treatment every step of the way. He knows he is an important part of his own cure and has to work with the doctors – pretty impressive for a ten year old it seems to me. Ok, so maybe he doesn’t like bad tasting medicine…

Later in the day Josie and I met with Dr. Walters of Keith’s oncology team. He will lead the stem cell harvest and later on the actual transplant procedure. Many details will still reveal themselves only as we get closer to each procedure but we now have a clearer picture of the overall sequence of events and risk factors. Keith is scheduled to have another bone marrow aspiration next Monday just prior to his next course of chemo. If the results show the marrow is clean, ie: not contaminated with cancer cells, then the stem cell harvest procedure will likely follow this next round of chemo, after his counts have rebounded again with double doses of G-CSF. He will be given a new cocktail of chemotherapy drugs for this next course that the cancer hasn’t ‘seen’ yet. It’s one of those sneaky techniques employed to minimize the chance of the cancer becoming resistant to the drugs it has ‘seen’ before.

Later in the day, Keith stopped by Park Pool with Scott to watch swim practice and say hi to anyone who wanted to say hi. It was the first time back by the side of the pool since he swam in OMPA in early August and he felt good to be there again. Another first – Josie and I were able to go out for a nice dinner together for the first time (excluding the hospital cafeteria) since Keith’s diagnosis. Thanks Judy for spotting us!

Here’s to good lab reports!


“Well today for breakfast I had a cinnamon roll. For lunch we went out to Quiznos. For dinner we had pasta. Oh yeah, the Make-A-Wish people came to our house. For my wish I decided that I would like to go scuba diving at the Great Barrier Reef because I want to swim with moray eels and octopuses.” Keith

Parent’s Note:

Tonight Keith met with two very nice volunteers from the Make-A-Wish Foundation who interviewed him to find out what it was that he really, really wanted as a wish to look forward to. He’s been thinking about his wish for some time now and for those of you who might have ever had the privilege to see Keith’s collection of stuffed animals, you would have at first been impressed by the sheer quantity of them and then would have been struck by the unusually high percentage of them that are members of the cephalopod family. His most treasured ‘stuffies’ are five octopuses (very well-worn) and one cuttlefish, each of which can usually be found in, around or under his pillow. Swimming with octopi may seem like an odd thing to do for you or me but given his love for animals in general and especially his interest in creatures of the sea his wish request makes perfect sense and is so uniquely Keith-like.

It is worth pointing out that Make-A-Wish no longer just serves kids that can’t be cured but is there for all kids that face extremely difficult medical challenges. While the wish can’t be promised, there is a pretty good chance of it happening they say. Still, Keith is going to think of a back up wish in case he can’t do his first choice. The other unknown is that we have no idea when he might be physically or medically up to such an adventure. In any event it will be a great reward incentive to help him push through the tough times ahead and the many treatment procedures still to come. We are thankful such a noble organization exists. We also never, ever thought they would be ringing our doorbell.

It goes without saying that we would trade all the make-a-wishes in the world for a healthy Keith.

Another milestone: over 10,000 visits to Keith's site. That's almost one visit for every white blood cell!


Parent’s Note:

Today was one of those days where a lot needed to get done, and needed to get done early in the day.

Keith was scheduled for a CT scan that required fasting for several hours beforehand. So everyone got out of bed extra early today so that Keith could get some breakfast into him before the 7am “food curfew”. Later, after ingesting a cinnamon roll and some strawberries Keith yanked up his shirt for his standard blood draw that is routinely required on Mondays and Thursdays. He has become so nonchalant about this procedure that he now plays his Gameboy while we fiddle with all the tubes and syringes. He only breaks his game concentration to snap close the clamps on his Broviac lumens when we are finished flushing them with Heparin.

Soon afterwards we split up into several directions…Scott trudged off to the school bus stop with his 40 pound backpack (uphill and into the wind…), I left for the office stopping by the lab to drop off the little vials Keith so kindly produced while Josie, Judy and Keith piled in the car and headed for the hospital.

After reporting to Children’s Hospital Keith was more than relieved to find out that he didn’t have to drink the two glasses of contrast fluid after all that we were led to believe would be required before the scan. When he was given the nod by the nurse that he would get a ‘pass’ today he was so happy and almost jumped into the CT scanner saying “great, this is going to be so easy”. And it was. He seems to have a way of sweet-talking the nurses…

Later Keith and his entourage returned home stopping by Gepetto’s again for lunch, hanging around the house for the afternoon and then stopping by Park Pool again to watch swim practice – there seems to be a pattern developing here…While at the pool, Keith learned from one of his school friends that the science test was really hard and that he would probably need to make it up sometime so better start studying soon…

Lastly, many of you may have read Jeannie Fitch’s entry from yesterday regarding a blood drive at Wagner Ranch School that she has organized on Keith’s behalf, but for those of you who may have missed it I am copying it below just to make sure you see it. It is another amazing show of support for Keith and our family and we are so thankful to be a part of such a caring community.

Attention Friends of Keith & the Kelley’s:

Tuesday Oct. 10th, 7am-1pm
at Wagner Ranch Elementary in Orinda
in the Multi-Purpose Room
There will be a blood drive in Keith’s honor.
Please participate if you are able.

Save the date. Blood donors must be at least 17 years old, in general good health, weigh at least 110 pounds, and must not have donated blood in the last 56 days. Please sign up in advance by logging on to We need a minimum of 90 pre- registered donors. Click "find a drive" at the top of the page and type in wagnerranch as the sponsor code or contact me, Jeannie Fitch at 925-253-1097 with any questions. This is a great way to support the Kelley family and a wonderful gift to give Keith and countless others that are in desperate need of blood. Please participate if you are able.

Jeannie Fitch

Obviously, any blood donated will not be specifically dedicated to Keith, but we now realize how important it is that our local blood banks have reliable supplies available when needed. Keith was the beneficiary of more than several anonymous donors so far and literally owes his life to this precious resource being available when he needed it. Sadly, he will likely need many more blood transfusions to support his treatment and before he can eventually be cured. Even if you are not in the Orinda area, and I know many of you aren’t (Uncles Chris and John!), consider giving blood to your local chapter of the American Red Cross.

Thanks in advance to all who are considering and participate in this noble gesture.

FRIDAY, SEPTEMBER 22, 2006 09:48 PM, PDT

Due to the lack of significant news today, the editorial staff has decided to take the night off. We apologize for any inconvenience this may cause.

Oh, yeah, Keith still feels great today.


Parent’s Note:

It has been such a treat having Keith home since way back on September 7th. Life has seemed almost normal for the past two weeks and Kirby has enjoyed the company of his best buddy. Keith’s strength, weight and blood counts have all recovered nicely since his last round of chemo.

Saturday morning started out with Keith’s “I’ll-get-out-of-bed-if-you-make-waffles” breakfast request and, yep, pretty soon that waffle / coffee aroma was swirling around the whole house…mmmmm. We are such doting parents.

Later, with a full carbo-load in his tummy Keith led Michigan to another convincing win – this time over Wisconsin to remain undefeated. They did have a so-so first half and we had a stern talk about how he needed to be more attentive to wearing his ‘chemo-telepathic’ cap throughout the entire game so that the Badgers wouldn’t score any more points. He worked his magic in the second half. I suppose he still has time to refine his ‘powers’ so that the Wolverines shut out their remaining opponents on their way to the national championship. (Hum Michigan fight song here)

After the game he went to a neighbor’s house and spent most of the afternoon just having fun with a friend and for dinner we picked up that great barbeque brisket from Bo’s in Lafayette. Really good! So a great day and indeed a good week for all of us, especially Keith.

Alas, it is time for the man-o’-steel to report for duty again. Everybody at Children’s Hospital is eager to see him again and we are expected to check in sometime on Sunday. He will be re-admitted for his third course of chemotherapy. The standard pre-chemo tests will be performed as well as a second bone marrow aspiration preceding the start of chemo sometime in the day on Monday. We are told this course will take 4 days of continuous IV to administer instead of the previous 3 days and it consists of a new combination of drugs. Hopefully he will tolerate this version as well as the last. If all goes according to plan we should be back home by the end of the week – maybe even Friday the 29th where he can again recover for a couple of weeks and resume Kirbying.

Judy, Keith’s aunt who has been staying with us for the past week, headed back to Boston on the red eye tonight. She has been the easiest houseguest and our home hasn’t looked so spic-n’-span since, well…. ever. She found and eliminated cobwebs that we had no idea existed. I’ll bet that even the spiders that made them had no idea they were there… No speck remained unturned. Plus she was just plain fun to be with. Thanks Judy! Your family surely will be happy to see you again…. the spiders in our house will breathe a sigh of relief as well…..

And yes, since it is the Autumnal Equinox, it is time to announce the winners of the ANC quiz from a while back. Well, actually a forensic lab will be required to determine whether the answers were typed on an IBM Selectric, so the winner is still in doubt, but the correct answer was ANC = 50. I think most of you got it right… congratulations!

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