Wednesday, November 1, 2006

November 1st - 7th: The Leech-O-Matic


Parent’s Note:

So here is a quick summary of Keith’s clinical schedule – dry as it may be. For the past two days he has been receiving high dose G-CSF (neupogen) to boost his white blood cell production. We have been able to administer this at home with pre-filled syringes that we connect with special tubing to his Broviac. The syringe is placed into a special pump that slowly infuses the contents of the syringe over the course of about one hour. Pretty simple actually.

Also for the past few mornings we have been also taking blood samples (a bit more intense of a procedure) to Children’s Hospital lab to have them processed with the results then sent to Lucile Packard. A special test that measures CD34, an antigen that is expressed in progenitor cells, has also been performed to determine when Keith is ready to begin the collection cycle for his peripheral blood stem cells. Each time the test has been run so far he has not been at the necessary CD34 level, whatever that is. So we will not be going to Stanford in the morning as we had thought. We’ll just keep giving him his G-CSF and taking the lab samples in until we get the ok to head down for the collection cycle. It may be Friday, or it may be over the weekend, we’ll just go with the flow when Keith is ready.

For those of you that really want to dig into the science here’s a CD34 link. CD34

Keith is still feeling great with no negative side effects after transforming into a red ghoul and back.


Parent’s Note:

Keith’s ANC and white blood cells are starting to spike upwards after being beaten down by the latest cycle of chemo. His current white blood cell count is 9.0 and is at the upper end of normal range, and his ANC is at 7,920 and is actually well above normal range. This progress parallels his recovery timing in all of his previous chemo cycles. So everything should be a go for the stem cell harvest at Stanford right?


Nope, he has to do better. The CD34 level that I mentioned in yesterday’s journal needs to be at or above 20 and he’s only at 3.4 now. So a call from the transplant coordinator at Lucile Packard indicated that they wanted things to go a little faster than they were going and we have been instructed to stop infusing the G-CSF intravenously through his Broviac (painless) and must now inject him with a syringe subcutaneously in his tummy (ouch!). We were dreading this possibility and hoping that the infusion pump method would get his counts up where they needed to be. But alas it’s not to be.

Josie and I received an impromptu lesson on how to give a ‘real’ shot from the nice folks at Children’s Oakland, you know the kind with a sharp, glistening metal needle – not those toy-like plastic needles like we have been using – the kind of needle that stirs up classic Freudian nightmarish fear and anxiety – both in the receiver (Keith) and the giver (parents). I was able to try my skills on ‘Chester’ the dummy torso that hangs around the clinic for just such occasions. I wouldn’t say I perfected the technique but I must have done ok by the nurse’s standards (at least I didn’t break the needle off) and was cleared to give Keith his next injection at home tomorrow. It is a hard enough to watch your child get a shot let alone have to give it to him.

Through all of this Keith was very brave again as usual, quietly watching as his hapless parents struggled with Chester while he absorbed the actual implications of daily needle pokes for a while. Thankfully the injection today turned out to be much less painful than Keith thought it would be and that should make it easier for him tomorrow.

And for me.......

FRIDAY, NOVEMBER 03, 2006 10:13 PM, CST

Dad: "So how was your day today?"

Keith: "I’d say it was probably an 8"

Dad: "Why was it an 8?"

Keith: "Because you gave me a shot."

Dad: "If I didn’t have to give you the shot, how would your day have been?"

Keith: "I would give it a 10."

Parent’s Note:

It seems that the 3 minutes it took to administer the injection shaved two whole points off Keith’s happiness scale – and I totally understand. Who in their right mind wants to get a shot? I’d have to say that I wasn’t looking forward to it either but it turned out fine in the end. Keith said it didn’t really hurt and I got the medicine into him. Mission accomplished. We’ll be repeating these subcutaneous injections for the next several days before apheresis begins at Stanford and we will continue until apheresis ends. So we’re looking at a week or so of daily shots.

For the rest of the day Keith plane-shifted between schoolwork, Kirby calling and World of Warcraft computer gaming (yes Michael, he’s back online now). He got his WOW character from level 17 to level 20. I have no idea what that really means, just thought I’d pass that along because Keith was pretty pleased with his accomplishment.

Meanwhile Josie scrambled to coordinate the logistics of getting the necessary Neupogen vials sent to us so that we would have enough for the next several days. It seems that Healthnet wants to mail order it from their Pennsylvania distribution center but that doesn’t get us the necessary dose for tomorrow morning. After quite a bit of phone time Josie was able to negotiate a deal to get a few doses from a local source, narrowly averting disaster.

Sorry to report Keith didn’t have a ‘10’ day, still given the circumstances an ‘8’ is a pretty good score in my book….


Go Blue!

Yep, that's Mike Hart holding Keith's Banner. He had a so-so day today, rushing 154 yards on 25 carries.....

Parent’s Note:

We got the G-CSF shot out of the way early so Keith and the rest of us could enjoy the remainder of the day stress free. Because the Michigan game wasn’t televised today Keith grabbed his M cap and we headed out for a day at the Oakland Zoo with his friend Michael where he dutifully sent play calls between visits to the various animal habitats. According to Keith it was a toss up between the squirrel monkeys and the elephants for ‘most entertaining animals of the day’ honors (for very different reasons).

Back home for some computer game time and that pretty much sums up the day. A fun day by Keith’s reckoning.

It was decided that we don't need to submit the usual labs over the weekend, so we’ll find out where Keith’s CD34 count is on Monday and that will certainly set the course for the week ahead. I’d be surprised if he wasn’t ready to begin apheresis by Monday or Tuesday, but then again we’ve had lots of surprises in the past few of months.

SUNDAY, NOVEMBER 05, 2006 09:45 PM, PST

Parent’s Note:

Not much news to report so prepare to be bored. We’ve enjoyed a nice stretch where Keith has been feeling good. If another chemo cycle was next on the protocol schedule Keith would be starting it today or tomorrow. As it stands he gets a break of sorts as we wait for his CD34 level to reach the necessary level to start the peripheral blood stem cell collection. The lab draws on Monday will certainly result in communication with Lucile Packard Children’s Hospital and one of two scenarios will play out. He either will not be ready, in which case we continue to inject Neupogen and wait or he will be ready in which case and we head down to Stanford to begin the collection. Sounds pretty simple.

In other news, Scott did his good deed for the week playing his clarinet along with his music teacher at the local convalescent home here in Orinda. Josie said he sounded great and the audience was appreciative.

I realize I’ve been slacking in providing handouts for the Hem/Onc 101 course that Keith is teaching us all. The link to the chart below will give you a visual representation of his white blood cell count as it has endured four cycles of chemo to date.

The red dots represent lab results over time. The most recent lab indicated his WBC at 19.9 (x1000) on November 3rd. Anyone want to take a guess as to what it will be when his next lab results are back on Monday after having received two more injections of G-CSF?

Closest to the actual number (without going over…) wins a photo of Kirby signed by Keith. Good Luck.

Keith's White Blood Cell Chart

MONDAY, NOVEMBER 06, 2006 09:09 PM, PST

Parent’s Note:

The much anticipated labs came back and we now have a clear plan of action. We need to be at Lucile Packard Children’s Hospital at 8:15am tomorrow (Tuesday). Figuring an hour and forty five minutes to get the 55 miles from Orinda to Stanford in rush hour traffic and an hour to get ready and give Keith his Neupogen shot, we need to be up and running by 5:30. A tall task with our two kids.

Keith has an appointment with the apheresis machine with hopes of collecting a nice supply of stem cells that will be counted, evaluated and then stored in the deep-freezer (next to the breaded chicken cutlets) for a while until he needs them later for his replacement therapy.

We are told the on-line time with the machine to be in the range of 3 hours, so with the usual pre and post-treatment routines we will be at LPCH for most of the daylight hours. What happens on the following days depends on how tomorrow goes.

As for the answer to the WBC challenge from yesterday: Keith’s WBC count was 27.9. Amazingly, Linda Bemis predicted 28.2 which is within the allowed scientific margin of error – dead on I say. The coveted Kirby picture with Keith’s autograph is on the way to you!

Ok, because there were only two entries Annie gets one too…

Updated WBC Chart

TUESDAY, NOVEMBER 07, 2006 09:37 PM, CST

Parent’s Note:

Leech-O-Matic. That was the name boldly emblazoned on the machine that dominated the corner of the small room where we spent most of the day and to which Keith was about to get physically attached to for what would be almost 4 hours. So official looking this nameplate, it wasn’t immediately obvious that this was only a nickname. Apparently there are several other apheresis machines in the unit that have been bestowed similar titles such as “Bloodsucker” and “Dracula”. Later I learned that kids like Keith are called ‘Walkie Talkies” because, well, that’s what they can still do. It’s endearing to know that someone at Lucile Packard Children’s Hospital seems to have a sense of humor, warped though it may be.

Leech-O-Matic and others of its ilk are about the size of a small front loading washing machine, but it reminds me more of the old reel-to-reel tape decks I grew up with, except instead of audio tape it is fitted out with loops and coils of clear plastic tubing leading to and from spinning ‘reels’ and hanging bags of fluids. Of course one of these fluids is blood, and that is what was being pumped out of and back into Keith. The ‘reels’ somehow centrifuge the blood to separate out the stem cells and they are then collected in another hanging bag. Sounded like a washing machine numbingly stuck on the agitation cycle for 4 hours. At the end of the procedure Keith had produced a nice bag containing what we surmised are lots and lots of healthy stem cells.

The whole procedure was as advertised – painless and boring. About the only complaints Keith had were that he felt chills (cool blood returning) and he wasn’t able to log into his realm of World of Warcraft, where he had planned to game away the time. So he improvised and spent some time composing an email with this picture - I copied from this directly from his email:












For those of you that need help, it is a representation of a particular type of cephalopod common in the world’s oceans but has a habit of being caught and served in restaurants under the pseudonym of ‘calamari’. I thought it was a very clever graphic.

Toward the end of the procedure Keith was paid a visit by Rita, the amazing trick-performing mutt. Keith watched as Rita’s human ran her through her repertoire of sits, stands and spins. The best trick was when Rita sat perfectly still as a large treat was placed on her nose. Perfectly still….. Perfectly still….. “OK” barks the human, and she snaps the treat after flipping it off her nose in mid-air. Keith got to run Rita through her paces a couple of times and really enjoyed her visit. Rita must have consumed about 20 treats in our room and had been doing the same routine for most of the other kids in the unit for a couple of hours before showing off her stuff to us. And she was still going strong…. I think Kirby has a little catching up to do in the trick department.

Hmmm…. maybe afterwards they hooked Rita up to a machine named “Up Chuck-O-Matic”…..

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