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.

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