Wednesday, October 25, 2006

October 25th - 31st: 25 Nestle Crunch Bars and 3 Toothbrushes


Dad: “So would it be ok if we came here for your bone marrow transplant?”

Keith: “Yea, I like it here. It’s warm”

Parent’s Note:

It may not be the best reason to select a bone marrow transplant center, but for Keith the visit to Stanford’s Lucile Packard Children’s Hospital seemed to be pleasant enough for him to feel comfortable with the idea of driving an hour plus each way….

Our consultation at LPCH went well. Keith met with the transplant physician for a few minutes and asked a couple of questions. The one I recall him asking was “So you’re just going to get my stem cells out this time, right?” The answer was ‘yes’ but the doctor, sensing Keith was sharper than your average bear, went on to describe the ‘collection’ process in greater detail. Keith seemed satisfied with the explanation and left the small conference room to join Uncle Jack in the waiting area to where he was looking forward to playing Age of Mythology on his laptop computer. Josie and I stayed on to discuss the finer details of the collection phase and also info on the transplant process.

We were relieved that we will be allowed to continue to infuse Keith’s G-CSF through his Broviac instead of through subcutaneous injections that Stanford prefers – unless his white blood cell recovery doesn’t bounce back as quickly as they would like. When his while blood cell count crosses above magic 1000 mark we will begin to administer higher doses to prompt more stem cell production. We are now on a daily home blood draw cycle to monitor his WBC counts until we’re told we can stop. The actual collection will involve 3 to 4 hour outpatient sessions for as many consecutive days (up to 5) as it takes to collect all of the stem cells that are required. These are then frozen in liquid nitrogen and stowed safely away until the transplant procedure occurs sometime later. The central line that Keith already has in place should be sufficient for the procedure and that is good news.

The doctor made Keith aware that the apheresis process can be, well, extremely boring so please make sure to bring plenty of entertainment. I could read on Keith’s face that this doctor was ok in `his book, basically saying bring your computer and video games and have at it.

The preliminary calendar provided to us indicates the stem cell collection would possibly start on November 1, allowing Keith to enjoy Halloween as a red ghoul the night before. Given the amount of G-CSF he will receive in the preceding days, his ANC level should be a gazillion or more, so even though he will be wearing a mask he won’t actually need one.

Personally, I think he should junk the red ghoul costume and just go as a humongous lymphocyte instead.

THURSDAY, OCTOBER 26, 2006 10:03 PM, PDT

Parent’s Note:

Keith felt pretty good and had a mostly uneventful day despite having an ANC of basically zero. The one exception occurred during the morning blood draw at home. Josie was unable to get the little lab vials to fill properly from his Broviac so she put in a call to the clinic to get on-the-fly instructions from the nurse on duty. It was a procedure that we had never practiced so Josie was a bit stressed but pulled it off just fine in the end. Somehow I always seem to miss the exciting stuff.

When the lab report came back later in the day it became apparent that Keith’s red blood cell count was low again so it was quickly arranged that he will report to Children’s Hospital Oakland day clinic in the morning for another blood transfusion. Thanks again to all who have given blood (or attempted), especially Uncle John.

After the whirlwind of the past week trying to sort out the transplant team and location, Josie and I are feeling more comfortable with the idea of having the procedure done at Lucile Packard despite all of the logistical dilemmas it places on us.

Besides, Keith is a smart kid and it will look good on his resume to have earned his way into Stanford at the ripe old age of ten………..


FRIDAY, OCTOBER 27, 2006 10:02 PM, PDT

Parent’s Note:

Keith is all juiced up again. Not only did he receive a bunch of red blood cells, he also received a new batch of platelets. This doesn’t mean he should go out and intentionally try to skin his elbows and knees to see if they scab over, but it is always handy to have a few platelets when something like a loose tooth pops out (which is about to happen).

Keith along with Josie and Jack all headed for the day clinic for a 9 am appointment. Keith was led to an isolation room because of his low ANC level and the nurse drew a blood sample for the lab. In addition to the platelets and red blood cells he received an injection of G-CSF and by mid-afternoon he was shown the door and everyone headed home again.

The results of the lab sample were sent to Lucile Packard as will the results of tomorrow’s home lab draw. They are monitoring him closely as we approach the collection date for his stem cells sometime early next week (probably).

Jack is heading back to Boston in the morning, so we will be on our own for a while. Sure was nice to have him around. Keith will certainly miss his uncle who was an ever-willing gaming partner during the past week. Scott’s attending a school dance tonight with all of his buddies and we can only assume he is having a good time. I suspect that we will get the usual one sentence synopsis of the event, a remarkable parallel to the way I evaded social conversation with my parents some 35 years ago…..

Next week promises to be intense so we’re saving up our energy. A relatively quiet weekend is on tap with tomorrow slated to be Get-Ready-for-Halloween-Before-It’s-Too-Late-Day, working on a few little art projects that Keith has expressed interest in over the last week or two. I seem to recall he wanted to make something unusual like an octopus ghost.

Very appropriate.

SATURDAY, OCTOBER 28, 2006 10:31 PM, PDT

Parent’s Note:

It might not have been a very impressive win, but Keith transmitted enough good plays to send Northwestern home with a loss and keep Michigan undefeated. He’s actually conserving his energy for the big Ohio State game – smart kid.

Keith’s cap is now 9 and 0 and safely stowed away in his medical cabinet next to the pre-filled saline syringes and G-CSF pump.

Oh, yeah, Healthnet has agreed to extend insurance coverage for his hat as well.............

SUNDAY, OCTOBER 29, 2006 10:08 PM, PST

Parent’s Note:

Keith had another good day. He was happy, expressive and seemingly pain-free, entertaining us all with his usual wit and charm throughout the day. Because his ANC is still hovering around zero, he and we hovered around the house all weekend, not venturing too far a field.

Unfortunately, the lab at Children’s Hospital called to tell us that the morning lab sample we dropped off earlier came back indicating that Keith needed yet another blood transfusion and more platelets. It was just this past Friday that he had his last transfusion of RBCs and platelets, so we’re a little surprised we are returning so soon to have it done again. So Monday morning bright and early we’ll show up again at the day clinic.

Keith is becoming such a regular customer I imagine he might just be able to walk in and say “Fill ‘er up. The usual.”

MONDAY, OCTOBER 30, 2006 10:19 PM, PST

Parent’s Note:

Keith got ‘juiced up’ today, receiving another transfusion of red blood cells and platelets. Most of the day was spent at the day hospital at Children’s, but Keith didn’t seem to mind too much. A laptop with a strategy game kept him very busy and entertained most of the time. His ANC is starting to bounce up and it looks like we will commence the daily high-dose infusion of G-CSF starting tomorrow morning. From what we have surmised from the transplant coordinator at Lucile Packard that would mean outpatient stem cell collection at Stanford beginning Wednesday or Thursday.

I have to say it’s amazing to me. Except for his thin and scraggly hair and a couple of tubes sticking out of his chest Keith seems like his regular ol’ self right now – happy and, well, a kid. Maybe it’s the transfusion, but he felt this way yesterday even before getting re-fueled. How he has been able to function at all, let alone approach normalcy is incredible to both of his parents and speaks not only to the resiliency of kids in general but to Keith’s inner strength and spirit.

There have been so many acts of kindness sent our way since this ordeal started 83 days ago and I’ve tried to share many of these instances with you through these journals. I thought I would mention one other. A couple of weeks ago Keith received a package in the mail containing a CD with a song written, performed and recorded especially for him. It was produced the Songs of Love foundation, a nonprofit organization that creates original personalized songs, free of charge, for children facing tough medical challenges. I have to admit it was an emotional moment listening to this song with Keith. He seemed at first a bit uncomfortable at the attention, but he smiled at the lyrics and in the end thought it was pretty cool. I wouldn’t expect to see it topping the pop charts any time soon, but I asked him if it would be all right to share it with his friends through this journal.

The link below should take you off-site and you will need some sort of player that can handle .mp3 files (windows media player or quick time should do the trick. It's 3.2 mb so be patient).

Keith's Song

If for some reason the link doesn’t work, maybe you can sweet talk Keith into humming it for you.

TUESDAY, OCTOBER 31, 2006 10:15 PM, PST

“I got 25 Nestle Crunch bars and 3 toothbrushes” Keith’s tally of his take for the night after trading with his friends

Parent’s Note:

Halloween Night and everything fell nicely into place: Keith’s blood counts were up and he felt great meaning he was cleared to head out into the moonlit darkness with his friends as a red ghoul. It was our treat to see him enjoying himself with his buddies and slogging up and down steep driveways with a heavy bag of goodies. He had been looking forward to this night for quite some time so we are glad that he wasn’t disappointed. We all knew that it might not happen if his recovery timing was off.

For those of you who were wondering exactly what a red ghoul looks like and for those of you who have been requesting updated photos, your requests have been answered – we aim to please around here.

Hope everyone had as enjoyable a Halloween as we did.

Friday, October 20, 2006

October 20th - 24th: "I Feel Good"... at Least for a While

FRIDAY, OCTOBER 20, 2006 10:24 PM, PDT

Parent’s Note:

Keith is home again. I could leave it at that and it would be a complete journal entry by my reckoning. But I’ll go on for a bit…

This might have been the ‘easiest’ of all of the cycles he has had so far. He has not felt sick so far (to the credit of the nursing staff) and we are keeping up his meds at home so it stays that way.

He’s of course happy to be home again and made the usual rounds to say hi to Kirby. He also brought home with him his killer gaming skills honed at the hospital and was looking wherever he could for someone he could victimize at Monopoly, GameCube or chicken-foot dominos.

We have filed an appeal with our insurer to have Keith’s bone marrow transplant at Children’s but as a backup, we have been also looking into having his transplant done at Lucile Packard Children’s Hospital at Stanford and have set up a consultation meeting on Wednesday of next week. If Keith is feeling up to it we would like to take him down to see the doctors and the facility.

We’re looking forward to a great weekend at home.

SATURDAY, OCTOBER 21, 2006 10:38 PM, PDT

Parent’s Note:

We pulled his cap out of the vault and plugged it in to his head once again. Sure ‘nuf he did his magic again and the #2 Wolverines are on track for the big showdown with the Buckeyes for bragging rights to the best team in college football. 8–0 and counting…

( If you are a Buckeye fan DO NOT click this link... )

Despite being exhausted by all of his efforts, he still was in the mood to seek out some Halloween décor and so we piled into the car and returned with two large pumpkins (one tall and skinny, the other wide and height challenged), an assortment of gourds and some Indian corn. He also had plans for several art craft projects that we just didn't have time for and will push off to tomorrow. You know, it’s just not too early to get into the holiday spirit when you moonlight as a red ghoul …

Keith demonstrated a surprisingly avid appetite today, starting with the standard morning fare of cereal but moving quickly along to an eclectic selection of homemade tacos (thanks Gabe!), a BLT – double bacon x 2, and salmon wrapped in prosciutto with a tomato / potato gallette and a bean medley (thanks Pam!). For an appetizer he had an infusion of G-CSF.

To continue his culinary extravaganza Keith is hoping to go to San Francisco’s Chinatown to have lunch at his favorite ‘floatie boatie’ sushi restaurant (I know, seems like the wrong neighborhood for a sushi restaurant). Both Keith and Scott love to go to there whenever we drag them into the City. Don has been working hard for the last several days in the garden outside our kitchen window and it really shows: where once dirt and a retaining wall were the focus now a great cascading rock garden takes the stage: it looks amazing. I like to think of it as a healing garden, offering great comfort to all of us. Rumor has it that the deer think it is pretty special too…

Keith has been feeling great all day long. We are so relieved that he has had a relatively comfortable week given what he has just been through. He really deserved a break like this one and we are all happy for him.

SUNDAY, OCTOBER 22, 2006 11:59 PM, PDT

Parent’s Note:

Just when we thought we were in the clear from the residual effects of chemo, we had a day like today. Keith woke up feeling fine, but soon afterward started to feel queasy and he became sick to his stomach. Unfortunately we were just not able to ever get ahead of the nausea and for the rest of the day he was sick, sick, sick. By the evening he was so exhausted we realized that there was no way we were going to beat this on our own and we could see Keith was becoming ever weaker and severely dehydrated. We made the call and soon afterwards were in the car heading for the ER at Children’s.

There was initially some hope that we would get some fluids in him and return home later in the evening, but the physicians felt the best option was to keep Keith overnight. He was moved upstairs to the 5th floor and is now comfortably resting and looking a whole lot better than he did earlier in the evening.

So that is where he is for now and he should be able to return home in the morning sometime. Seems like every day is an adventure.

MONDAY, OCTOBER 23, 2006 10:27 PM, PDT

Keith has just one thing to say.........

TUESDAY, OCTOBER 24, 2006 10:32 PM, PDT

Parent’s Note:

Because last night’s journal was a bit brief, I’ll try to catch everyone up on the highlights of the last two days. Keith’s grandparents Annie and Don are safely back in Michigan after spending almost two weeks with us. Sad to see them leave, but we already have travel reservations for them to return in December. Ah, but we have a new houseguest this week: Keith’s uncle Jack arrived on Sunday from North Andover and has been doing a great job of helping with anything that needs help while keeping lots of smiles on Keith’s face.

Scott has been going through his own little ordeal – with his orthodontist. He had upper braces placed a week ago and it took several days before he could really eat anything solid. Much to his dismay, however, a band slipped out of place and he went in again today to have it fixed. They must have tightened the wire pretty well this time and now his teeth are aching again. I don’t think he thinks it’s a whole lotta’ fun.

Keith returned from his little hospital stay Monday afternoon and looked and felt much better after spending Sunday night plugged in, getting re-hydrated and gaining the upper hand on his difficult nausea episode. Today the pink bucket only had to make an appearance one time.

We are scheduled for a consultation with the bone marrow transplant team at Lucile Packard Children’s Hospital (Stanford) Wednesday afternoon. Our expedited appeal to stay at Children’s Oakland was flatly denied by our insurance company. So in preparation for the hand-off, Keith needed to make another rendezvous to the day hospital at Children’s Oakland earlier today to have a battery of blood samples drawn so the folks at Stanford can accurately assess his condition. We have mixed feelings about splitting our care between two institutions but we’re open to giving it a try as long as everybody talks to each other. Keith will come with us to Stanford to meet the doctors and to see for himself the facilities.

Excellent news came back from the detailed assessment of the bone marrow samples taken a little over a week ago. Apparently the test can identify one cancer cell in a million and there was no detectable cancer in either of the two samples. While it doesn’t mean that his cancer is gone, it does mean his bone marrow appears ‘free’ of cancer and so it’s time to collect his peripheral blood stem cells as the next step in his protocol. This will happen before his next scheduled chemotherapy course and could happen as soon as the end of the month or sometime in early November depending on his recovery from the last chemo cycle.

Should be an eventful period coming up.

BTW, looks like over 15,000 visits to Keith's page. Thanks for checking in!

Monday, October 16, 2006

October 16th - 19th: Chemo Cycle #4

MONDAY, OCTOBER 16, 2006 10:41 PM, PDT

Parent’s Note:

Keith was his usual brave self and sailed through his bone marrow aspiration just as he did three weeks ago. The procedure was over shortly after noon and this time he was already awake by the time we met up with him in the recovery room. He was chomping at the bit to leave the day surgery center to get settled into his hospital room across the street. Perhaps part of his motivation was to get on with his chemo treatment, but I think he really was hoping to snag one of those rolling GameCube consoles that float around the 5th floor patient rooms. Of course he was pretty hungry as well, having not eaten since the previous night, so he sent me off to find sushi and he tore into it when I returned.

As it turns out this is a popular week to get treatment if you are a pediatric oncology patient at Children’s. All the rooms in the usual unit were full and so Keith was set up in a shared room down the hall in a general patient unit. It was panic at first as he was rolled into the room and realized he would be bunking next to a noisy toddler - and not only would he not be in charge of the TV controller, but most likely he would be watching Spanish language programming for the duration of his stay. Much to his relief his roommate moved out soon after he moved in and he was able to stake a claim to the window bed vacated by the previous tenant. He may still be assigned another roommate but at least he has seniority: the window seat and the TV controller are his for now.

Keith’s uncle Chris was in town briefly on his way from Seattle to LA, so he along with Annie and Don arrived with a chocolate cake in tow and we all celebrated Annie’s birthday at the foot of the bed. Keith seems to be in good spirits and feels ok for now. The chemo will most likely start during the night and will last for three days followed by at least a day of monitoring. It is the same combination of drugs that he received during his first two courses and he seemed to tolerate the second course quite well, not succumbing to any significant nausea. We’re hoping for a repeat performance.

As I left Josie and Keith tonight, the nurse came into the room with some news that caused Keith’s eyes to light up. After many requests to locate one, a GameCube console had been found and Keith was next on the wait list for it. I guess this means that Josie will be playing Sonic Hedgehog into the wee hours with one happy kid.

TUESDAY, OCTOBER 17, 2006 10:48 PM, PDT

Parent’s Note:

Day one of round 4 almost under our belt and Keith has been comfortable all day. Chuck, Keith’s current shift nurse, is quite a character and when he’s not taking care of sick kids he races motorcycles for ‘fun’– you know, the road-racing kind where the rider literally lays the bike over about 60 degrees in the turns and drags his (or her) knee on the pavement while careening around corners at 90 mph. 150 or so in the straightaway… Anyway he carries action photos of himself on his PDA (and some 8x10 glossies in his backpack) and proudly shows anyone who wants to take a look which is mostly everyone. It’s a great ice-breaker with the kids and Keith really likes him. I’ll admit I was suspicious at first, after all each of his photos show the rider in full racing gear wearing a helmet so it could be anyone, right? Plus Chuck still has all of his front teeth – what’s the chance of that in this sport? But ultimately I’ve come around to believe him just because I like him. And if it turns out that it’s all a ruse, hey, it makes for great conversation.

Keith had another roommate for much of the day, but again he has the room to himself for the time being. Still it will certainly be another very long sleepless night. Josie endured this same situation last night and now it’s my turn to wake Keith up every hour after midnight all the way through 8am to empty his bladder and protect it from the toxicity of the chemotherapy drugs.

Today’s impressive list of drugs that Keith has ingested include Doxorubicin, Vincristine, Cyclophosphamide, Mesna, Zofran, Ativan, Decadron, Kphos, Zantac, Reglan, and Benadryl. There’s probably more that I’m not aware of. I now consider Keith’s body officially VPD (veritable pharmacological cornucopia).

Now for the inevitable insurance headaches: it had to happen sooner or later and so we seem to be facing our first significant insurance roadblock. Apparently the bone marrow transplant procedure that is a critical part of Keith’s protocol has been denied by our carrier and cannot be performed at Children’s Hospital Oakland. It looks like Stanford or UCSF are the contracted providers in the ‘vicinity’. The stem cell harvest is fairly simple and should take less than a week of daily outpatient visits. The transplant or ‘rescue’ procedure that follows is much more involved and will likely require many weeks of inpatient care. So we’re just trying to get our heads around what this little decision will actually mean to us. For starters it means that instead of 7 miles each way to Children’s we will be facing some very long commutes (60 + miles to Stanford each way) or be facing very different family dynamics where we physically relocate somehow for a period of time. There’s also a new physician team inserted into the middle of his protocol that of course raises the continuity of care issue. I suppose that probably won’t be a huge issue (assuming both groups get along) given the reputation of both institutions programs but still….

Anyway, it’s a big unknown right now and another cause for anxiety on top of everything else.

No one said this cancer thing was going to be easy…


Parent’s Note

Between the long night last night and distractions related to insurance issues there’s not much energy left to write, so I’m afraid this will be brief. Keith has made it through the 2nd day of chemo and still has no major discomfort. He’s didn’t eat a whole lot today but that’s not surprising and the meds have kept him just a bit off kilter from his usual buoyant Keith self.

Josie’s spending the night with Keith and a 17 yr. old roomie so it should be interesting. Looks like the doctors are shooting for a Friday am discharge.

While we haven’t seen any official report, there was a rumor spreading that both of Keith’s bone marrow biopsies looked clean this time and additional samples have been sent to southern California for microscopic analysis. The previous bone marrow samples taken three weeks ago were quickly deemed contaminated and were not sent for further testing, so we are taking this as qualified good news.

Will try to compose a more coherent update tomorrow.

THURSDAY, OCTOBER 19, 2006 09:42 PM, PDT

“I’d rather have a bone marrow aspiration than drink that nystatin” Keith letting it be known how he feels about that yucky yellow liquid in the little plastic cup.

Parent’s Note:

As this is being written, the last few drops of Doxorubicin / Vincristine are coursing down the IV line and into a sound-sleeping Keith. So he is basically finished with cycle 4 and for the rest of the night he will continue to receive fluids and antiemetics until he gets the thumbs-up to head home sometime before noon on Friday (hopefully).

He’s been a real sport throughout this stay so far and has generally been in high spirits and well ‘entertained’. He loves the visits by Annie and Grandpa Don and Scott. He has a laptop with one of the Age of Mythology games that has kept him occupied for a good chunk of time. He also takes particular enjoyment in creaming anyone who is foolish enough to ‘battle’ him on the GameCube console that somehow has remained in his room for the duration of his stay so far. I think he particularly enjoys watching me struggle with my hapless character, pressing B to grind down a railing on a skateboard when I obviously should have pressed A-A-B-A (or was it B-A-B-A?). He has won so many duels with me that his memory card must be nearing its capacity to store a number with that many digits. Whenever I lose, I look out of the corner of my eye, trying not to reveal my true frustration, and I always see that satisfied looking grin on his face. So I’ll keep trying and failing and he’ll keep winning and smiling and I’ll call that a win-win any day.

The only time I’ve seen him upset during this stay was when I let the resident doctor talk him into taking the dreaded nystatin. Now, don't get me wrong, he really should take the nystatin – its prescribed to help prevent fungal infections in the mouth that can cause sores that are pretty common with chemo. But somehow the taste really bothers him and he get’s so completely worked up about it that he literally gets sick to his stomach. It's really hard to watch. Apparently Keith is not the only kid here that feels the same way about nystatin and it strikes me that there would be a whole lot more healthy mouths around here and a whole lot fewer doses of nystatin that mysteriously “go missing” if someone would just make the darn stuff taste better to kids. Maybe the nice folks at Ben & Jerry's could get involved....

At some point I will spend some time describing our little insurance issue, but there’s not enough time or space to do it justice now. Suffice to say dealing with insurance issues is frustrating, confusing, demoralizing, counterproductive, deceptive and a whole bunch of other descriptors that probably are best not to put into writing in this journal. We will eventually work out a solution with our insurer and make sure Keith continues to receive all of the treatment necessary for his survival. It’s just taking a lot of energy right now and we certainly don’t need any more unknowns when we are already dealing with so many.

(Deep breath)

Let's see...did I mention that Keith is coming home tomorrow? Yea!

Wednesday, October 11, 2006

October 11th - 15th: Things Don't Always Go as Planned


Parent’s Note:

Today everything went according to plan until it didn’t.

That probably doesn’t make any sense so let me start from the beginning. Here’s the quick sequence of the day’s activities more or less… Keith woke up feeling great except for a stuffy / runny nose and ate a good breakfast. Josie drew his lab samples and dropped them off at Quest Diagnostics mid-morning while Keith did his homework from the previous day. Later he asked if we could be so kind as to take him to Lafayette to have lunch at Quiznos. Seemed like a reasonable request and so everyone agreed and piled into the car. Keith ordered up a double BLT and gobbled up the entire thing. Back home around 2 pm his home school tutor worked with him to review math and science. Keith was pretty tired afterwards and coincidently it was about this time when Josie got the call from the clinic.

Keith’s blood counts came back very low in a couple of areas. His ANC had dropped to 200 from almost 3000 on Monday and his hemoglobin was very low. That transfusion we thought might be necessary earlier in the week was now necessary.

I think Keith thought he was out of the woods for the rest of the week so when he heard the news that he would need to be admitted for an overnight at the hospital he was pretty upset. “Why do I have to go to the hospital???…. Why couldn’t they have called earlier so that I didn’t have to stay overnight???” …lots of similar questions. We knew he wouldn’t like the news but we were surprised by how badly he felt about it.

But in typical Keith fashion, after the initial shock and after cooling down a bit, he said “I don’t think it will be that bad. I can read my book and watch Food Network”. We think it’s remarkable that he seems to have a way of coping with these kinds of situations in the end and that is a great relief to us and helps reduce the anxiety for him.

So off we went to check Keith in to Children’s. He will stay the night in an isolation room (because he has a drippy nose) and get his transfusion(s). Hopefully he will have a restful night and wake up all pink and rosy again. He’ll also cool his heels there until his scheduled CT scan later in the morning. After that he should get the thumbs up to go home. That’s the plan and we’re sticking with it.

Although sometimes plans go according to plan until they don’t....

THURSDAY, OCTOBER 12, 2006 09:25 PM, PDT

Parent’s Note:

Keith is now wearing his new batch of red blood cells and it looks pretty darn good on him.

I’m not sure he or Josie got the best night’s sleep last night, as it wasn’t until around 1am that he actually received his transfusion. The standard hourly vitals monitoring that accompanies this kind of thing continued through most of the night as well. He was awakened again at around 6:30 am to force down a bowl of cereal because food was deemed taboo after 7 due to the CT scan that was scheduled for later in the morning. But all in all it was pretty smooth sailing. Once he got past drinking the contrast fluid (again he sweet-talked the nurses into not having to drink most of it) his day brightened considerably. He jumped into the scanner and shortly after noon he was given his walking papers.

Josie brought him home and he ate a nice turkey and stuffing lunch, followed soon afterwards by his regular diet of fun and games. If his blood counts measure up after next Monday’s bone marrow samples are taken he will be readmitted for his fourth round of chemo. This is beginning to feel like déjà vu al over again but with each round his cancer takes a licking and that makes each round almost worth looking forward to.

So for now he is happy, rosy and at home again, beginning to think about what he wants to be for Halloween. And that’s a good thing...

FRIDAY, OCTOBER 13, 2006 09:49 PM, PDT

Parent’s Note:

I asked Keith how his day was on our usual 1 to 10 scale but he didn’t respond, he was having too much fun with his brother. His entire day was full of fun, friends and giggles. So I’ll go out on a limb and give it a 10 for him.

We’re looking forward to a couple more days like this before heading back on Monday to Children’s.

It was great to see Keith back to his usual happy carbon-based-lifeform self again.

SATURDAY, OCTOBER 14, 2006 11:19 PM, PDT

“It was fun to watch my friends make the underwater mural for me. There are some really good drawings of sea creatures.” Keith

Parent’s Note:

The mural that Keith referred to is a fantastic large canvas in hues of blues and greens with orange highlights and a huge octopus in the center. Keith stopped by Wagner Ranch on Tuesday after the blood drive to watch its progress and doodle a jellyfish himself. The final mural was delivered to Keith yesterday and it’s another amazing example of friends coming together to help make Keith feel better. Thanks Laura and all of the many Wagner Ranch artists for making this happen – it’s fantastic! I'll see if I can get some new photos posted soon.

Keith's classmate and friend Nolan stopped by to interview him for an article he plans to write for a school project. It was fun to listen in on the Q&A session - future probing reporter on one hand and seasoned evasive interviewee on the other.

Saturday was a another good day for Keith. With the exception of the schoolwork we forced him to complete, he pretty much was director of activities for the remainder of the day. Let’s start with food….for breakfast he wanted scones and jam – he got it. For lunch he asked for grilled panini – he got it. For dinner he suggested Bo’s barbeque in Lafayette – he got it. For desert it was a Klondike bar – you guessed it – he got it. When it comes to food, we just follow his lead and we are never disappointed. His entertainment choices included video games (surprise), a cat puzzle and Monopoly – all granted. We’re not saying no very much lately.

Of course he also was itching for another Michigan win. So with a house full of Wolverine rooters we ‘tuned into’ the Michigan / Penn State game and marveled once again as he beamed his chemo-telepathic play calls to the field, keeping the 7-0 Wolverines in hot pursuit of the National Championship.

We sure hope the NCAA doesn’t catch on to our little secret or Michigan might face probation…

SUNDAY, OCTOBER 15, 2006 11:31 PM, PDT

“I got the usual, the red ghoul” Keith describing the Halloween costume he picked out today.

Parent’s Note:

Yep, this is about the third year in a row he’s been a red ghoul and somehow we never seem to figure out we could have just used last year’s costume – we now have three red ghoul costumes somewhere in the house. About the only difference in this year’s fashion statement is his choice of accessories – a couple of massive double-edged (plastic) broadswords (I think this was all the craze on the Paris fashion runways this year). Just to be clear, this isn’t the ghoul costume with that passé white plastic drooping facial-feature mask. No, this costume has one of those black mesh net faces so it doesn’t look like he has a face at all – just a mysterious dark-infinity-void-where-a-face-should-be-kinda’-look…. très spooky…..

It’s interesting that Keith seems perfectly comfortable with all of the physical changes his recent chemotherapy has imparted. He acknowledges his thin hair looks brutal (to use his own term), but still cares enough about his looks to comb what’s still there so it looks as good as it possibly can. Only on a couple of occasions he has commented that he wished people wouldn’t stare at him so much when he’s out and about. So he’s taken to wearing his Michigan cap when he does go out in public – not because he thinks it looks better, but because he feels it might help prevent some of those understandable but uncomfortable stares.

An observation about Halloween is that it offers a chance to level the playing field again for him. He should be able to run about with kids he doesn’t even know and feel comfortable that he won’t stand out like some sort of real-life ghoul – even though he may actually be dressed up like one.


Again we face one of those bittersweet moments as we prepare to head back to the hospital for the next round of chemo. Keith has been enjoying life and feeling well lately – almost normal - and it is very hard for us to see it end by taking him back to the place he associates with discomfort and anxiety. And yet in this twisted therapy paradox it is the treatments with all of their associated discomfort and anxiety that will ultimately allow him to return to enjoying life and feeling well again.

So it starts again. Keith will be NPO starting at midnight in preparation for anesthesia and another bone marrow aspiration mid-day Monday. We check into the clinic at 10 am for the usual pre-chemo physical assessment and if his blood labs indicate he is ready, he will be admitted to the hospital after his surgery and start the preparation for course 4.

If we’re lucky, he’ll be feeling good again by the time Halloween arrives and he dons his red ghoul costume and heads out into the night with all of his ghoulish friends, an empty bag in one hand and at least one massive double-edged broadsword in the other…just trying his best to be a regular kid.

Thursday, October 5, 2006

October 5th - 10th: The Blood Drive

FRIDAY, OCTOBER 06, 2006 11:23 PM, PDT

Parent's Note:

No significant news to report so this entry will be brief.

Keith enjoyed another quiet day at home and caught up on some schoolwork as well as other scholarly pursuits... It was such a quiet day in fact that I considered not posting a journal entry tonight.

About the only excitement to report was that a physician came to our house early in the day to draw a blood sample, run an ekg and some other tests. Keith had absolutely no problem with these little procedures... what a kid.

Ok, well actually it wasn't him getting poked this time it was me (routine - not an ermergency!). It was one of those rare times in the last two months that someone else that was getting stuck in the arm and prodded, and not him. When I showed Keith the small band-aid on my arm and told him how it stung to get all of those adhesive dots off my chest and legs he smiled wryly and gave me one of those little “you-can't-even-begin-to-know-what-I've-been-through -and-by-the-way-you’re-too-old-to-qualify-for-courage- beads” kind of looks.

I was reminded again, as any parent that has had to deal similarly with a child's suffering knows, that there is nothing you wouldn’t do or give to ease your child’s pain and anxiety. And still you can’t avoid sometimes feeling completely and utterly helpless.

Of course he was right although I admit feeling some kind of odd solidarity now, as though we are officially consecrated as blood brothers in this long fight together.

SATURDAY, OCTOBER 07, 2006 10:43 PM, PDT

Parent’s Note:

Keith’s cap is 6-0

SUNDAY, OCTOBER 08, 2006 09:31 PM, PDT

Parent’s Note:

Sixty days since Keith was first admitted and our ordeal began (I counted). In one sense it seems like forever ago and in another it seems like only yesterday we were living a care-free existence. We seem to be caught up in a spinning time blur.

Keith continues to feel well with no nausea but his energy level and his appetite have begun to fade a bit recently (although he did just consume a thick Double Rainbow chocolate malt). We fully expect that when the next lab results come back Keith will be issued an invitation to show up at the day clinic to receive some more grade-A red blood cells. He looks a bit Casper-ish right now and if Halloween were rescheduled for tonight he wouldn’t need to add too much face make-up to complete his ghoul costume.

So basically Keith laid low this weekend, working a bit on some of his homework, catching up on Food Network programming and spending a great deal of time behind the controller of his Game Cube, all the time sidling around the house in his bathrobe.

In an odd twist of fate, it may be possible that if he does receive a transfusion on Tuesday, it would happen on the same day as the blood drive at Wagner Ranch School where 90 or so people have generously signed up, rolling up their collective sleeves in Keith’s honor.

MONDAY, OCTOBER 09, 2006 09:22 PM, PDT

Parent’s Note:

Whenever we get a chance to trumpet good news we do. So this was a day of good news on many counts:

1) Despite yesterday’s predictions to the contrary, Keith really felt good today and buddied around with his neighborhood pals. He really enjoyed having some face-to-face time with humans in his age range for a change after spending most of the last two weeks confined to the company of family, medical professionals and Kirby. Generally he was high-spirited and ate pretty well too. Good news!

2) Keith’s lab panel was returned today and as we expected he was low in several categories including red blood cells and platelets but not to the point where he needs to show up in the morning at the clinic to receive a boost. While he is definitely borderline and could still need to take care of this later this week, he is off the hook for now. We will keep giving him his daily dose of G-CSF and maybe he won’t need any intervention. Also, his ANC level is climbing again, now nearing the 3000 mark, so mask-free outings are approved. Good news!

3) Keith’s grandparents, Annie and Don, arrive mid-afternoon on Tuesday from Michigan. Keith is really looking forward to seeing them again (and visa versa). They will spend the next two weeks with us and that will be a great help, especially starting next week when Keith is scheduled for the next course of chemo at Children’s. Good news!

4) The Make-a-Wish Foundation called today to let us know that upon official review by the official decision-makers Keith’s wish to go to the Great Barrier Reef was officially granted! We had been preparing Keith to make a second choice knowing that this wish might not be possible because of his age, but they apparently made an exception for Keith to travel internationally – their stated policy is that the patient must be 12 years old. And of course Keith will need to be deemed medically able by his doctor(s), but they gave the nod to the idea. The smile on Keith’s face envisioning his possible first nose-to-nose underwater encounter with a giant grouper was priceless. Good news!

TUESDAY, OCTOBER 10, 2006 11:02 PM, PDT

“It was fun to see all of my friends at Wagner Ranch school today” Keith

Parent’s Note:

This was a big day. The blood drive at Wagner Ranch seemed to be a great success. So many people came together to both organize and donate that it took us by complete surprise. Of course it was a great honor to see such a large turnout in support of Keith and all of the donations will surely help stock the local blood bank for the many others in addition to Keith who need it. Thanks to Jeanie and all of the many volunteers who organized this event and to Wagner Ranch for generously offering their facilities, disrupting their normal activities for the day. Sorry I wasn’t around for the entire drive to thank everyone who participated. I’ll confess, it was my first time as a donor and now I realize how important it is to give if you can.

Later, Keith and Josie visited Wagner Ranch. It was Keith’s first time back to his school since summer break and he was able to say hi to all of his friends and help paint a sea-life mural that his class is working on. I understand that Trevor serenaded his classmates playing the “Charge!” tune with his trumpet followed by his classmates yelling “Go Keith!” Very cool.

Annie and Don arrived after a long and arduous trip from Grand Rapids, surviving a canceled flight and missed connection. To top it off we made them take an airport shuttle from SFO instead of picking them up. How’s that for hospitality?

Looking ahead, Keith has another CT scan set up for Thursday. This time it sounds like they are going to make him drink that nasty contrast fluid. That should be fun…

Ok, I’m tired and don’t feel like proofing what I’ve written – I’m using the missing pint of blood as my excuse.