Saturday, April 7, 2007

April 7th - 11th: Mission Impossible

SATURDAY, APRIL 07, 2007 10:41 PM, PDT

Parent’s Note: Day +31

Mission Impossible:

'Good morning, Mr. Kelley. Your mission, should you choose to accept it, involves drinking 20 ounces of liquid. You have 14 hours to consume said quantity. As always, should any member of your team be caught or killed, the Secretary will disavow all knowledge of your actions. This message will self-destruct in five seconds.'

This was the charge given to Keith by the doctors this morning. It sounded pretty easy but it’s 10pm now and after 14 hours of gentle but firm reminders to drink he seems to be stuck somewhere around 18 ounces. Keith has never, ever been a big volume drinker so I’m leaning toward giving in and calling it close enough.

Mission impossible it is.

SUNDAY, APRIL 08, 2007 10:00 PM, PDT

Parent’s Note: Day +32

Scuttlebutt has it that Keith could be released as soon as Tuesday to move across the street to the Ronald McDonald House. That would be a great milestone and I think he is really ready for it. Josie and I are ready too – well almost. We still need a bit more instruction as to how to set up his IV rig for his overnight infusions but that’s about it.

Monday will be a busy day as it usually is, including a CT scan that will be used to establish a radiation plan for Keith. In a couple of weeks or so he’ll start to make daily visits to the hospital clinic over the course of a week to receive focused radiation treatment intended to “mop up” any suspect areas the scans might reveal.

Keith continues to feel great (I realize that this is repetitive information) and woke this morning to three big Easter baskets provided by some very thoughtful admirers. Later someone brought him a chocolate bunny and he promptly bit a leg off. It is surprising how many stories I have heard of former bone marrow patients returning to Packard where they received their treatment to give something back, either to show thanks to the staff or cheer up the current patients with fun surprises. Hopefully Keith will join these distinguished alumni and follow suit someday.

His mission once again today was to drink 20 ounces and he just called me from the hospital to proudly announce that unlike yesterday, today it was mission accomplished – he drank 22 ounces! It’s like beating your best swim time at OPP. Continuing along this vein, he’s becoming more interested in the thought of food again, commenting that he “would really like a fajita or taco right about now.” Despite having an undersized build he’s always possessed an oversized interest in interesting food. I’ll consider his recovery complete when he’s eating with gusto once again.

Hmmm. Maybe I’ll bring him a Gepetto’s apple fritter even though it is probably a dietary taboo. That did the trick a while back.

MONDAY, APRIL 09, 2007 10:11 PM, PDT

Parent’s Note: Day +33

Josie and I took a quick tour of the RMD house where Keith will be relocating Tuesday afternoon sometime. We will be one of several families living in the 6 unit “immune wing” as it is called. All of the families share the common experience of having kids who have just endured a bone marrow transplant so we should have a lot to talk about. The unit is set up with shared common areas (living, dining, kitchen, play) and each family has access to a private sleeping room with a bathroom. It looks like a nice set-up. Keith’s aunt Valerie arrived from Seattle Sunday and will help us lug much of what has accumulated in Keith’s LPCH room over the past month over to RMD house as well as keeping Scott company back in Orinda.

Today’s CT scan procedure was a bit different than what we were expecting from our past experiences at Children’s Hospital Oakland. It took about three hours to get through all of the steps, considerably longer than the 45 minutes or so we are accustom to. Unfortunately, Keith was required to wear his mask the whole time and that was very difficult and uncomfortable for him. After the scan was finished he was ‘tattooed’ using several needle pricks to permanently mark key spots on his tummy that will be used for calibration during the radiation therapy. This was a surprise to us all, but Keith did a great job handling all the pokes. Over time these marks supposedly turn into something resembling a freckle. I’m not sure how I feel knowing that my ten year old already has a tattoo. The good news is that it appears that radiation will only target the former site of his primary tumor and not his head (whew…) nor legs where bone metastases were located at diagnosis in August.

Enough medical drivel…..

Keith was in fine form again today, offering his unique wit and humor to anyone who dared to provoke him. In addition he got a pretty good workout walking under his own power to and from his room to the radiology department in the basement of Stanford Hospital. This required negotiating a series of very long maze-like corridors. Later, back in his room, he spent some time with his school teacher and brushed up on some long neglected subjects and assignments. Later still, a sinisterly smiling trio including Dr. W, the occupational therapist and the physical therapist swarmed into his room, each carrying a different ball – two soft inflated balls about the size of a soccer ball and one small hard bouncy ‘superball’. It didn’t take too long before the gentle game of catch escalated into a game of ‘bombardment’ with spheres flying all over the room, knocking over cups of water and anything else that wasn’t bolted down.

Keith is so ready to be discharged and honestly the hospital would be well advised to do it as quickly as possible before the room he is occupying is totally destroyed……

TUESDAY, APRIL 10, 2007 10:19 PM, PDT

“Wow, this place is great!” ......Keith’s first reaction after exploring his new surroundings at RMD house.

Parent’s Note: Day +34

Keith was given his walking papers today – he’s no longer a resident of Lucile Packard Children’s Hospital. He left his room this afternoon around 2pm wearing his respirator to the applause and cheers from the nursing station. It was a great moment.

It took several wagonload trips to the car to empty the all of the accumulated contents of Keith’s room but we finally did and hauled it all over to our new digs at RMD house. As evidenced by his exclamation above, Keith was quite happy with his new surroundings. He settled into a comfy chair in the family room and played his Nintendo handheld for quite a while. Meanwhile Josie and I met with our assigned home health nurse as she watched us prepare Keith’s night nutrition set-up. Then it was off to the supermarket to stock our assigned kitchen shelves – we’re on our own now after all.

Lots more to catch you up on, but it is late and we still have much to do before we can call it a day.

All’s good.

WEDNESDAY, APRIL 11, 2007 09:50 PM, PDT

Parent’s Note: Day +35

Keith has been in residence here at the RMD house now for a little more than a day and he’s doing great. He seems very relaxed here, with only one slightly startling moment when we both looked out the window of our bedroom into the courtyard of the adjacent wing and saw him. The man himself…….. the guy with the big red hair.

When I asked him this evening what the best part of his day was so far he responded after a long pause “Well, I think the best part is still to come.” After thinking about it a bit more he continued “I guess the best part so far would be going to school.” As you might imagine, this came as a shock to me, but he explained that after he went to the clinic this morning to get checked over by the oncology nurses he went upstairs to the LPCH school where the topic of the day was a science project. The idea was to explore different ways of getting marbles to move in interesting ways such as using tubes, rails and other devices. Apparently Keith suggested an idea that the teachers and the rest of the class really liked and he went about creating a course that involved launching a marble down a chute whereupon it flew off a ledge, hitting a plank of wood that fell over onto a spoon that launched a different marble into a cup…..

It sounded fabulously reminiscent of the classic game Mouse Trap.

Now that we’ve settled in here at RMD and stocked the shelves with food, our mission is to begin fattening Keith up. He is able to eat most foods but still must adhere to a strict low microbial diet consisting mostly of packaged and canned foods or food that we prepare that has been properly heated. Here is an abbreviated list of foods he cannot, must not eat:

Raw or undercooked meat (ie: no sushi)
Meats from the deli
Cold smoked salmon
Pre-cooked seafood
Raw or undercooked eggs
Miso soup (no tofu – ok by him)
Raw fruits (except thick skinned types)
Unroasted nuts or nuts still in the shell
Unpasturized juices
Frozen or dried fruits
Raw vegetables or herbs
Lettuce (ie: no salads)
Fresh salsa
Uncooked raw grains
Unrefrigerated, cream-filled pastry products (ie: no Twinkies or éclairs!)
Cheeses from the deli
Cheeses with molds – blue, stilton etc.

Soft cheeses – brie, camembert etc.

That’s pretty much it – and yes mercifully sealed chocolate is on the approved list. Until his body re-learns how to fight off bugs (and that could take months and probably much longer) he will need to be very careful about what he is exposed to. Similarly, he is especially susceptible to mold infections, hence the respirator mask. Apparently the air we breathe is full of mold spores that are fine for you and me but would be a disaster for Keith to inhale. We definitely got the “after all you have been through, you really don’t want to get a mold infection now do you?” lecture.

We couldn’t agree more. He wears the mask, and no sushi for now…..

Here is Keith’s new address for the next month or so.

Ronald McDonald House at Stanford
520 Sand Hill Road

Palo Alto, CA 94304-2001

Attn: Keith Kelley G106

Directions to the House
Phone (650) 470-6000
Fax (650) 470-6018


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