Day +46: Silliness and Lepidoptera

Keith continues to feel well and is in good spirits, thanks in part to Scott spending the weekend with him at RM House. When he acts silly, we know he is feeling ok and it didn't take too much encouragement for him to act the part for the quick series of photos above.


The overnight rains cleared out leaving us with a beautiful Sunday morning in Palo Alto. We managed to get Keith motivated to take a walk along a nice multi-use trail along Sand Hill Road. Along the path we spotted a caterpillar in the leaves of a nearby branch and then noticed that the tree was covered with them. When we got back to the RM House our curiosity led us to look up what kind of caterpillars they were and our best guess is that they are Tussock moth larvae (Orgyia pseudotsugata). Any lepidopterists out there?

Later Scott and I grabbed a trash bag and retraced our walk again, this time picking up trash along the trail as our Earth Day duty. Sadly, we filled a large trash bag in a matter of minutes.

Monday is back-to-business day for Keith and he resumes school at the hospital followed by his radiation treatment. He will also stop by the clinic and have his labs drawn. As the radiation therapy will most likely lower his blood counts, transfusions are expected in to keep his counts up and he may indeed need a unit of platelets fairly soon.

Day +45: Keith's Request

Not a real newsy day here. Josie and Scott drove down from Orinda after dropping Christine off at the airport. That meant that our entire family of four was together for the afternoon and evening which of course was great.

Lemon chicken was on the dinner menu again tonight (Keith’s request) along with pot stickers for lunch (Keith’s request). He is regaining his appetite again after yesterday’s little hiccup and even his overnight nutrition is tapering gradually. Scott and I will head over to the cottage tonight (thanks Kristi & Chuck!) when Keith is ready to settle in for the night.

I have started a new forum page (Keith’s request) where Keith himself could actually participate more in the dialog than he has been able to with this page, so if you are willing to navigate through the registration process I’ve included a link to the“Keith’s Forum” on the right hand sidebar of this page below the blog archive links. I simply have set it up and will manage it; the content hopefully will be driven by Keith and his friends & family.

As for tomorrow’s plans, more of the same with all of us hanging together in the living room of RM House (Keith’s request).

Day +44: Radiation Begins

Once the usual get-ready-for-the-day routines were completed, Josie and Christine delivered Keith to the BMT clinic for a quick physical exam and another lab draw prior to the radiation session scheduled for early afternoon. That left time for Keith to attend school for a while during which time he worked on another art project. He will be able to bring it back to RM House on Monday so we’re looking forward to seeing what he has created this time around.

Then it was on to the radiation appointment and Keith knocked off his first session successfully – it was quick and painless as advertised. Apparently at his previous appointment, a radiology technician used unfortunate word selection and mentioned that the radiation would ‘burn his skin’. Hearing this was news to all of us and launched Keith into panic mode. The tech quickly realized her mistake, forgetting that Keith was only ten years old (the Stanford Comprehensive Cancer Center serves adult as well as pediatric patients) and clarified that the ‘burn’ wouldn’t actually hurt, it would be similar to getting sunburn on a small area of his skin. Crisis averted and he returned to his cool, calm self again.

Back ‘home’ and RM House Keith suddenly began to feel green around the gills and for several hours was sick to his stomach. A bit confused and concerned we called the clinic and they seemed sure that it was probably not related to the radiation. Keith was just having one of those occasional episodes that can happen when kids go through what he has gone through. We were finally able to control it with Zofran around 4pm and he has been fine ever since.

Christine heads back home to Virginia on Saturday where she and her family are preparing for a two-year relocation to Dubai in the United Arab Emirates. We certainly admire them for their spirit of adventure and look forward to hearing frequent updates of their exotic exploits sand surfing and camel riding in one of the most over-the-top cosmopolitan centers of the world.

Day +43: Nachos Anyone?

Keith paid another visit to the radiology department today for the final dry-run of the actual radiation therapy. It was a fairly quick affair and the first day of actual treatment begins tomorrow (Friday). He’s then free to go to school afterwards. Josie and her sister Christine have been staying at RM House with Keith for the past two nights and I’ll bet they are having a pretty good time together.

When he isn’t out and about, Keith spends most of his time in the ‘living room’ of the RM House. This is the only public room apart from the kitchen that he has access to, as the rest of the house is off limits to him because of his compromised immune status. Unfortunately that means that the aquarium and the great room that you might see if you take the tour of the house are amenities that he can’t enjoy. RM House Tour Actually, none of the rooms in the photos are available to him. No complaints though, he seems very happy to have the TV set in the immune wing pretty much to himself for now.

Keith’s appetite continues to improve and both last night and today for lunch he requested (and got) nachos with all the fix’ns. The other piece of good news is that his white blood cell count has started to stabilize and even tick slightly upwards on his own. No help from GCSF!

Good news indeed….

Day +42: Getting Ready for Radiation

I shuttled Keith from RM House to Lucile Packard for a quick 9:15am appointment at the LPCH clinic to draw labs. This was followed by an appointment at the Stanford Comprehensive Cancer Center where the radiologists performed some fine-tuned measurements to confirm Keith’s radiation treatment plan.

Upon entering the building the sound of a live pianist playing in the lobby above us resonated down the open staircase causing me for a brief moment to think I had mistakenly ambled into a Nordstrom’s department store. I quickly regrouped and we checked in at the reception area, but something about that piano music awakened the inner shopper in me and I felt compelled to head upstairs and head for the café in hopes of finding a strong cup of coffee. Cup in hand, I headed back downstairs to rejoin Keith and soon we were escorted back to the exam room.

Keith removed his mask and climbed up onto the table of the impressive imaging machine and settled into a custom-formed cast of his upper back that was prepared at an earlier appointment to maintain a stable and exact lying position for this and future treatments. The machine awoke and moved Keith into position where a series of lasers, emitting from 3 of the 4 walls were turned on creating a series of bright green lines crisscrossing his abdomen. These along with other measurements were used to calibrate the exact locations marked with “tattoos” last week. It required that Keith lie on his back in one position for quite some time and he was clearly getting antsy toward the end. Several digital x-ray images were taken and viewed by the radiologists in the control room just outside of the lead-lined room that Keith and the machine were in. Eventually they were satisfied that the calibration was exact and Keith was set free again.

As exact and precise as all of this technology is, artistry is an important element of the successful application of radiation as well, and the radiologist that Keith is seeing is reputed to be quite the artist. Keith will return again on Thursday for a dry run of the actual treatment which consists of 12 consecutive days (excluding weekends) of radiation. The actual duration of the radiation beam during each of the treatments is quite short; only 30 seconds – so Keith should actually be more comfortable during treatment than he was today.

Later in the morning the lab results from the clinic were returned and Keith was scheduled for a bed in the day hospital to receive a transfusion of red blood cells. This was not unexpected and his recovery is marching ahead nicely. It seems that while the radiation treatment is painless, it has the negative side effect of suppressing the bone marrow production of blood products, so it is important that prior to his radiation treatment all of his blood counts are strong and that is what this transfusion is about.

* * *

A note from the editorial staff:

I have heard that some of you may be apprehensive about posting a comment on this page because of the registration requirements and others have found the registration process simply confusing. So today I made a change to the page settings to allow comments without requiring a password or registration. So if you were deterred before, please feel free to try to try again – just avoid using the ‘anonymous’ option if you can. As long as this ‘open’ system is not abused I’ll keep it that way so that all of you can continue to root Keith on to a full recovery.

Also - I have lost the ability to post photos - don't know if this is a temporary problem with the host or whether the setting change to allow all to post made a difference. Hopefully I'll get this fixed sometime soon, but if anyone has any ideas or suggestions....

Day +41: Fruit or Vegetable?

“…..and that brings up the question of vegetables.” Keith

Parent’s Note: Day +41

The image above is a piece of artwork that Keith produced last week and he was rightfully happy with his effort. So was I. We have it hanging on the door of his room. He’s always liked to draw and seems to possess a particular ability to process patterns and complex graphic shapes.

* * *

In regards to the vegetable quote above, the context of this remark is not what you might expect although we were at the dinner table when he uttered this line. Keith was referring to the game “Scattegories” that he along with three other classmates at school played today.

“Can you name a vegetable that begins with an ‘L’?” Keith asked.

I struggled for a moment and offered ‘lima beans’ to which he rolled his eyes and said “Dad, those are legumes.”

How about a lemon? I asked, knowing that he would bust me on that one too.

“Dad, that is a fruit.”

“So what is a fruit anyway?” I challenged, thinking that he would have no idea how to respond.

“Dad, a fruit is the ovary surrounding the seeds of a flowering plant.” he shot back with one of those didn’t-you-ever-learn-that-in-school sort of looks.

This is just a snippet of our dinner conversation over left-over lemon chicken tonight and I fared no better in the remaining discussion. Sheeeesh…..

I wonder if some of his blood stem cells have evolved into brain cells instead….

Day +40: Just a Regular Day

Josie has been with Keith at RM House for the past day while I have been in Orinda with Scott for the past two nights. So while I cannot relay a first hand account of the day’s events I did interview a reliable source: namely Keith himself.

His calendar is filled with a variety of activities. The list includes tearing through as many Tintin cartoon books as he can get his hands on (6 so far in the last day), attending school (today was Math-focused), getting outside for a walk with Josie around the RM House vicinity, and consuming one of his favorite meals that his mom prepares: Lemon chicken. In the interest of full disclosure, he also spent quite a bit of time on the sofa in front of the TV playing video games just to balance out some of the more scholarly pursuits of the day.

Looking ahead, Keith’s aunt Christine arrives on Tuesday to pick up where Keith’s aunt Valerie left off helping manage our dual location lifestyle. We have really been fortunate to have such family support through all of this. On Wednesday, we will join Keith at the Stanford Comprehensive Cancer Center to discuss with the medical team his upcoming radiation treatment plan.

Keith’s latest lab report looks pretty solid and the clinic has held off the GCSF for the past week or so in hopes that he will rebound on his own without any further assistance. Judging by the animation in his voice on the phone tonight I would have to say he continues to be on the upswing.

Day +39: Shifting Gears

Keith has been feeling great for quite a while now and continues to get stronger and eat more each day. Pizza, soup, cereal, chili, ice cream, and toast have all made the trip from Keith’s mouth to his stomach lately (although not at the same time thankfully).

Josie and I have seemingly found a rhythm and sequence that is finally comfortable for us to prepare his nightly nutrition and hydration – it’s a fairly complicated routine. As Keith eats and drinks more and more on his own, these infusions of TPN and lipids will eventually be reduced and eliminated altogether. He has also been taking his oral medication like a champ.

Scott spent most of the weekend in Palo Alto with his brother and that is about the best medicine there is ..... except for perhaps Dr. W and his dogs….

Day +38: Dr. W's Dogs Take Keith for a Walk

April 14, 2007: Day +38

Walking the dogs was definitely the day’s highlight. Keith got himself all suited up and we headed out to meet up with Dr. W who was at that very moment walking down the sidewalk with both of his dogs in tow to meet us. His canine friends included a large German Shepherd named Princess and a Vizsla named Coho. Neither are small dogs, but Keith donned his rubber gloves and took Coho’s leash. Dr. W. indicated that since Coho was 107 years old (dog years) she shouldn’t tug too much on the lead.

So off we went – three humans, two dogs, and one small pink bag filled with you-know-what in search for a bit of grass to run Princess (Coho wasn’t too interested in running). Soon we found ourselves at a nice park and almost immediately the skies let loose and the rain that we haven’t seen much of in California lately came pouring down. None of us seemed to care about the rain (with the possible exception Coho who was now wet and shivering). Keith loved the whole experience although launching slimy tennis balls to Princess with one of those long plastic ball launchers (you dog owners probably know exactly what this device is called) that allows you to throw the ball twice as far as normal had to be the highlight for him.

Princess tore across the park retrieving launch after launch and I think Keith could have been quite happy continuing this for hours. Princess, however, started to take her time bringing the balls back – a pretty clear indication that she had her fill. So Keith resumed his grip on Coho’s leash and we headed back to the RM House.

A little wetter than we started out, but a great experience for Keith. Even Coho seemed to enjoy it...

(if you click on the image above, you should be able to view a slideshow)

Day +37 Command Center

April 13, 2007: Day +37

Even though we are sharing this wing at the RM House with two other families right now, we rarely see any of them as they seem to spend almost the entire day inside their own rooms. Because nature abhors a vacuum, we’ve taken it upon ourselves to populate all of the remaining public rooms – the kitchen, dining room and especially the family room where Keith has set up his command center (ok, entertainment center to be precise). He has plugged his game cube into the big TV and the couch across from it has become his day-throne.

It was an art day at the hospital today and Keith was quite happy with some of the drawings he did. He really seems to like the school program here at Stanford, but not to worry, he still wants to come back to Orinda and rejoin his friends for school next fall. That’s our goal at least and the doctors are hinting that it is possible if his immune system can recover enough by then.

Tomorrow morning Keith has an appointment with his lead BMT physician, Dr. W. Come on, it’s Saturday – give the kid a break! Actually, the appointment is to join Dr. W. to walk his dogs around the vicinity of RM House. He’ll have to suit up in his mask with pirate do-rag, wear latex gloves (can’t actually touch the dogs) and whatever skin is still visible needs to be soaked in sunscreen. Still, Keith is really looking forward to it – and animal lover that he is, I don’t think he has actually ever taken a dog for a walk before so he's pretty excited.

I know, shame on us...

Day +36 Out for the Count

April 12, 2007: Day +36

There’s really not much to report today. Keith donned his pink mask over his pirate do-rag (quite the statement) and made it back to the hospital to attend school in the morning. Josie mentioned that he took a math test covering material he last studied over month ago – not sure how he did, but he mentioned that he felt a little rusty, like the first day of school after summer vacation.

He returned again to the hospital in the late afternoon for a scheduled appointment to have a platelet infusion which is usually a very simple procedure. This time he developed a couple of hives as a reaction to the infusion and that got the nurses hustling to counteract the reaction with a heavy dose Benadryl. Of course that sent him into a heavy sleep as it always does. Josie managed to wake him enough to wrestle him into the car and get him back here to the RM House but he quickly fell asleep again. So we set him up with his nightly nutrition infusion and he has been snoozing ever since.

Looks like he's out for the count tonight...

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

Website: http://www.ronaldhouse-stanford.org/

Be sure to click on the Journal tab above to view last night's entry

April 1st - 6th: April Fools

SUNDAY, APRIL 01, 2007 08:47 PM, PDT

Parent’s Note: Day +25

Keith leapt out of bed this morning, kissed his mom, did a dozen push-ups, read several chapters of his US history school textbook, wrote several thank you notes, and solved Rubic’s Cube eight times all before breakfast. Later he worked on his dissertation about the evolutionary patterns of cephalopods but ran into a research snag because the doctors will not let him do any underwater fieldwork until he has his Broviac removed.

April Fools…..

Ok, well he might have kissed his mom.

Seriously, he felt great today. By far, this is the best day of his recovery so far and except for still not eating much he really looks and acts like the Keith of old. It was such a treat to see him feeling so good – expressive and smiling. Jack, Scott and Josie were with him most of the day, leaving for Orinda late in the afternoon after taking Keith on another rooftop stroll decked out in his red robe, ski hat, sunglasses and pink mask. Apparently after the last chemo he needs to be very careful with sun exposure.

It was quite a sight to behold on a warm spring-like day…..flowers, birds, blue sky and an alien in a red robe.

MONDAY, APRIL 02, 2007 09:08 PM, PDT

Parent’s Note: Day +26

DUCK!!!!!!!!!

Keith enjoyed another day, feeling ever better all the time. He even was able to sip down a half of a bottle of lemon soda and later enjoyed some soup. It’s also spring break for Scott (I guess for Keith too….) so Keith had the undivided attention of his brother all day long.

Hard to beat that.

TUESDAY, APRIL 03, 2007 09:20 PM, PDT

Parent’s Note: Day +27

Today was more of the same, except more. That’s a good thing – a really good thing.

Keith’s ANC is in the 4000 range – great. He was drinking and eating even more today – super. Beginning yesterday he hasn’t been sick to his stomach at all after over three weeks of constant nausea – outstanding. He was disconnected from his IV pole for six hours today and in recognition of that he got himself up to the roof garden and looped around it (at a quick pace apparently) six full times – about a quarter of a mile under his own power – stupendous.

Today’s photo is taken from the roof garden and for anyone who might be curious, I’ve added another photo to the ‘gallery’ taken from Google Earth showing the roof garden from above so you can get a sense of Keith’s wanderings today. The sinuous path winds fully around the central courtyard below. Ok, it's a bit hard to see at first, but if you study it closely I think you will figure it out.

Yes indeed, things are looking up.

WEDNESDAY, APRIL 04, 2007 09:40 PM, PDT

Parent’s Note: Day +28

Four weeks post transplant and everything continues to be progressing well. In the same way a robin’s appearance signals springtime, computer and video gaming signals Keith is on the mend and feeling well. Sure ‘nuf, electronics were central to Keith’s (and Scott’s) entertainment strategy for the day.

The construction crew must have received a talking to from the administration to hurry up and finish the renovation immediately below the BMT unit where Keith resides. Whatever it is that they are building apparently needs to be firmly secured directly to the underside of the floor of Keith’s room. The sound of roto-hammer drills and banging was relentless today and while I am making light of it here, it did actually contribute to Keith feeling sick to his stomach at one point. Hopefully they will let up a little tomorrow.

Not much else to report other than the doctors have huddled together and hatched a plan for Keith’s escape. The carefully vague yet pleasingly specific phrase of ‘sometime early next week’ was uttered, signaling that freedom is imminent and soon Keith’s universe will expand exponentially beyond the walls of room 2314.

THURSDAY, APRIL 05, 2007 10:13 PM, PDT

Parent’s Note: Day +29

Marching along toward discharge and Keith continues to feel well. Now that the anxiety phase of the BMT procedure has passed we seem to be in this funny transition period, just itching to move on and move out, but required to stay in the confines of the room at least for a few more days. Frankly, as parents it’s pretty boring but Keith seems perfectly happy hanging with Scott all day. So we remind ourselves that if he’s happy then we’re happy too.

FRIDAY, APRIL 06, 2007 10:57 PM, PDT

Parent’s Note: Day +30

Keith is the BMT unit’s “star” patient. At least that’s what Keith’s head transplant nurse declared today. Now, of course I’ve always thought of Keith as a star kid in general and I suppose that if one has to be a patient of any kind it’s nice to be considered a star patient as well. What I think she meant was that Keith was doing so well that there just wasn’t much for them to do anymore except to stop in once in a while and perform the routine maintenance checks and maybe take a crack at the Nerf slingshot.

Keith continues to feel well and is drinking much more now that his IV fluids have been reduced considerably. He is due for some more platelets over night and received another dose of GCSF earlier today. It sounds like this is a normal pattern, especially with their neuroblastoma patients.

Should be a very quiet weekend here – not much excitement in store as measured by the traditional definitions of excitement. What does excite us though is the thought of Keith returning to familiar surroundings, re-uniting with his friends and trying to restore some semblance of normalcy in his life again…..

and we seem to be getting closer and closer to that treasured scenario every day.

March 26th - 31st: The Slingshot

MONDAY, MARCH 26, 2007 10:41 PM, PDT

Parent’s Note: Day +19

Keith’s uncle, Jack Ferres, flew out from Boston yesterday and is staying with us for the next week or so. The boys always look forward to seeing him and today Jack and Scott drove down from Orinda after school let out to pay a visit to Keith. From what I heard Keith had a great time and was even coaxed out of his room for the first time in three weeks.

Let me elaborate on this.

The doctors couldn’t be happier with Keith’s recovery so far. What is of most interest to them now is getting him ready for discharge. It could take a couple more weeks but to that end, Keith needs to eat solid foods and drink on his own (hasn’t done that yet), take oral meds (hasn’t done that yet), have a stable ANC (working on that) and be physically able to move about on his own.

It was this latter topic that Keith decided he would tackle today. At first he didn’t want to do it, but after some negotiating he agreed that he would leave the room under his own power only if he could bring his ‘nerf’ slingshot with him. We’ve learned that compromise is useful in situations like this and Josie agreed to the deal. So with slingshot in hand, IV pole at the side and ‘light red’ facemask clamped to his head he left his HEPA filtered sanctuary and began to slowly circle the hallways around the nurses station. The slingshot soon came to action with Scott feeding Keith the soft, round ammo balls. Uncle Jack was the target and the more Jack was hit the faster he tried to escape being pummeled. Not to miss out on this fun, Keith raced to keep up the attacks. In the end Keith made a double loop around the unit, foam balls were flying everywhere and the nurses were cheering him on.

It was a good day. Fortunately LPCH’s accreditation assessment team wasn’t anywhere to be seen…..

TUESDAY, MARCH 27, 2007 11:03 PM, PDT

Parent’s Note: Day +20

Steady progress and happy doctors. The theme of the physician’s morning visit was to encourage Keith to work on swallowing, starting with small sips, working up to being able to take oral medication along with food & drink. The sooner he can do these things, the sooner the IV pole can be returned to the medical supply closet, allowing Keith to be shown the door to the outside world.

Keith’s mouth is feeling a lot better and even though his stomach is still twitchy these activities should be something he can work on over the next several days. He now knows that he can begin to take control of his life again and now has the incentive and motivation to shorten his stay.

WEDNESDAY, MARCH 28, 2007 09:16 PM, PDT

Parent’s Note:
Day +21

Continued progress today. Medically Keith is doing great – no issues with his counts or blood chemistry, he has lost the puffiness in his face, his liver seems to have returned to normal size and the doctors are still very happy with his solid rebound. Weaning Keith from the IV pole is the main priority now. Some things are slowly being discontinued, like his pain meds and others are being reduced, like his nutrition which will continue as nightly IV infusions after we are discharged. Still others will need to be continued in some other form, like oral medications that he is currently receiving via IV.

Josie and I received a primer course in how to administer his TPN, a custom made soup of proteins, carbohydrates, vitamins & amino acids. This along with another solution of lipids will need to be given to him by us nightly for quite some time after discharge. There are many steps to the process and a lot of plumbing involved but we’ll figure it out.

The oral medications shouldn’t be a big issue in the long term, but it presents Keith with his biggest current challenge. He still hasn’t started eating or drinking yet and he is quite apprehensive about swallowing the pills that are sitting in front of him right now. I’ll let you know if our attempt is successful or not in tomorrow’s entry. There are rumors flying about that Keith could be discharged as early as the middle of next week if he continues on this track and he is able to swallow his pills and eat.

Finally, the humorous picture is from a greeting card Keith received today that made us all laugh. I suppose Keith might begin feeling like the unfortunate cat as he itches for an escape from Room 2341.

THURSDAY, MARCH 29, 2007 09:52 PM, PDT

Parent’s Note: Day +22

Success! The pill was swallowed. Make that the pills.

Keith did a great job controlling his anxiety and made a huge step forward toward losing the IV pole. Keith had another good day and is still tracking the way the doctors expected, if not better. Since he has been off GCSF for quite a while his ANC has dropped as his own body takes up the responsibility of producing a new immune system. He is currently just below 500 but the sense is that he may be at his nadir and his counts should rise on their own soon. The hope is to avoid having to re-introduce GCSF again as it signals the body to produce only white blood cells at the expense of many other types of blood cells that are necessary for a functioning immune system.

Projecting forward to the date when Keith is finally discharged from the inpatient setting – possibly next week some time – we will unfortunately not be able to return to Orinda. The protocol for his BMT procedure requires that he remain within 15 minutes of Stanford (no bridges) so that in the event of a post-discharge complication he has quick access to medical support. So we have decided to relocate Keith to into a special room at the Ronald McDonald House a short distance from Lucile Packard. From what we have been able to discern the Ronald McDonald House seems quite attractive and the room that Keith would be assigned is one of six in a special immunocompromised wing fitted out with special air filtration and separated from the general rooms. House rules state that only one parent may spend the night with Keith and so we will continue a similar pattern to the one we have adopted for the past month or so with Josie and me rotating nights with Keith.

We are told that for quite some time after transplant, BMT patients are at increased risk for infection from the usual pathogens – viruses, bacteria & molds. So this seems like the sensible approach. The stay should last for about one month during which time Keith will frequent the clinic at LPCH for lab samples, check-ups and radiation treatment. The radiation plan is not yet clear and additional scans will be done to establish one in the next week or two. Radiation is standard for the protocol that Keith is following but will be targeted to a only few selected sites, and probably including the site of his originating solid tumor.

The pink mask and slingshot made an appearance again today and it seems to have almost become a highlight for the staff. Some have even made appointments with Keith to try their own hand at the slingshot in his room. The clock on the wall seems to be a favorite target. We seem to be really hard on clocks…..

FRIDAY, MARCH 30, 2007 10:58 PM, PDT

Parent’s Note: Day +23

Keith’s ANC slipped a bit further below 500 today so he did receive a dose of GCSF just to give his system a little boost. No big deal - it’s pretty normal for this to happen we’re told.

For entertainment and distraction, Keith has been enjoying a game called ‘Blokus’, a strategy game where each player begins with an identical number of irregularly shaped pieces. The object is to place as many of your pieces on the playing grid while blocking your opponent from doing the same. I’ve played at least 5 games with Keith and have gone winless so far. Josie has fared no better. Uncle Jack is the only challenger that has won a game (he won one, lost two) and I’m guessing that was probably because Keith was just trying to be nice to his uncle. No such leniency with his parents though. Keith has always been pretty good at math and my sense is he's as sharp as ever in that category.

The big news today is that Keith was unplugged from his IV pole for 3 hours during the afternoon – meaning no pain meds – and he was fine. He took the opportunity of this brief period of freedom to get out of his room and harass the nurses with his slingshot. Apparently legend of the slingshot has spread – and now even the lead physicians all want a crack at trying to hit the clock on the wall in his room.

What have we started here?

SATURDAY, MARCH 31, 2007 09:52 PM, PDT

Parent’s Note: Day +24

Keith’s day didn’t start out on a very positive note. He seemed tired, withdrawn and wasn’t interested in activities of any kind except watching TV. He complained that his stomach felt weird and sure enough we had several run-ins with the pink emesis basin before he started pulling out of it and feeling better toward mid-day. He made a strong recovery in the early afternoon, which was coincidently the time that Scott and Uncle Jack arrived. Keith was really looking forward to their visit today and with a dose of Zofran he was able to muster up enough energy to put on a good show for them and enjoy their visit. The first thing he wanted to do was to ‘battle’ Scott in a game of Blokus. Yep, he won. A bit later on he was disconnected from his IV pole, similar to yesterday, and we took advantage of the great weather to get out of the room and head up to the roof garden where Keith could walk around outside his room unfettered by his facemask. He looped around the full circuit, blowing some bubbles and watching them float off into the distance. It was good to see him make such a dramatic rebound after feeling crummy in the morning.

Medical update: The single GCSF infusion he received yesterday had a profound effect, boosting his ANC from a lowly 340 to over 5000. Amazing. He was also discontinued from his continuous pain relief. He seems to have no pain issues at the moment – it is the nausea that we need to overcome. Until we can figure this out he will continue refuse food and fluids. Obviously, he needs to be able to eat and drink before we will get the nod from the doctors to leave the confines of the hospital for good.

Around mid-afternoon, a building maintenance person stopped by the room and posted letter sized note above every plumbing fixture in the room. It said “Do not turn on water or flush toilets between 11pm and 5am. Workers will be connecting new drain lines in the construction area (below)”.

A hospital patient room without water? This should make for an interesting night…..