Monday, January 12, 2004

Warning - boring medical stuff straight ahead, Captain!

Howdy and good evening to all of you! Kendrie and I returned this afternoon from what might have been the smoothest clinic visit yet. It was a pretty darn good day, if I say so myself. We stayed at the hotel overnight in order to arrive bright eyed and bushy tailed (well, if we actually HAD tails, that is) at her 8am appt. Today’s clinic visit included her IV drugs Vincristine and Methotrexate, Zofran orally, plus another dose of Methotrexate in her spine.

***WARNING – Boring medical stuff straight ahead, Captain!*** Several of you (mainly friends of mine of childbearing age) have asked what is the difference between a spinal tap (aka LP; lumbar puncture) like Kendrie receives and the epidural we all beg for during labor. (ok, I admit it, *I* was the one doing the begging!) To explain it, Kendrie lays on her side in a “nose to knees” position. I put a numbing cream on her back an hour beforehand, and she is given “sleepy” meds through her port to help her relax. Not all clinics routinely give this medication, especially to older kids, but I’m so thankful ours does. Next, the doctor sterilizes the area, and then inserts a needle between two vertebrae where CSF (cerebrospinal fluid) is found. The CSF drips out of the hollow needle into a container, and after a small amount is collected, a syringe is attached to the needle and the chemo medication is slowly injected. Then the needle is removed, and the CSF is sent to the lab to see if any cancer cells are present. Kendrie has to lie flat for half an hour afterwards, but they dim the lights and play soothing music and all told, it’s a nice little nap. Some days I wish they had another table for me, too, ha!

So, like I said, it went very well today and since the clinic didn’t call (in a demented “No news is good news” game that we play every time she has a spinal) that means the fluid was clear; no cancer cells present. Her CBC showed her counts are extremely good. In fact, protocol calls for a two week break from chemo after her next visit in ten days, but the nurse practitioner said if Kendrie’s counts remain as high as they are, they might not have her wait the two weeks but move right on to the next phase. Her oncologist sat down with me for a few minutes before the LP and explained (more boring medical stuff ahead!) that some kids like Kendrie seem to tolerate high doses of chemo extremely well (as evidenced by the fact her counts haven’t fallen.) So in her case, it appears fortunate that she was randomly assigned to the harshest arm of treatment for her clinical trial, as a less aggressive arm might not have been enough for her. Of course, it’s also possible we could go back for her next appointment and her counts could be in the toilet and that’s all a moot point, but it’s certainly a good feeling to know that her bone marrow appears to be working just fine, producing the right (good) kinds of cells, and that her immune system isn’t highly compromised right now. I don’t know what the heck we’re doing that’s making all this work so well (besides praying constantly) but we’re sure going to keep doing it! (read between the lines – blatant solicitation for continued prayers from all of you as well!)

So, in a lame attempt to keep you feeling “close” to my goofy kids, I thought I would share with you the funniest thing each of them said to me this week:

Brayden: “Mom! You know the movie ‘Cat in the Hat’?? Did you know they made a BOOK out of it, and we have it in our school library!?!”

Kellen: (we were discussing whether he got to go outside for recess, as the weather has been a little cold and wet here) “yeah, but only the kids with flak jackets got to go”. I had been a little distracted, but suddenly perked up, “Flak jackets? FLAK jackets? What the hell kind of zero tolerance policy is that???” and he gave me this bemused, 5-yr old look and said, “F.A.T. jackets, mom, only the kids with warm, fat jackets got to go.”

Kendrie (having somehow combined all our favorite terms of endearment for one another – doofus, dork, and goofball): Now walks around saying “You’re a DORF!” Unfortunately, I immediately thought of Tim Conway, ie, Dorf on Golf, and made the mistake of bursting out laughing the first time she said it, which of course encouraged her, so now it’s like a Celine Dion song that’s been played into the ground and to be truthful, isn’t so cute and funny anymore but a little annoying and wearisome. (sigh) Do you think she could be dyslexic???

Not so funny thing Kendrie said to me this week: “Do we have to go to the mall and walk again? You’re too slow!” I didn't have the heart to tell her I LET the elderly mall walkers pass me to make them feel better! (ok, not really, but cut me some slack; I'm pushing her in the stroller, as well! OK, ok, I'm just fat and slow, but I'm trying!)

On a more serious note, any of you who have a minute to spare, please stop by the following CB site and offer some words of encouragement to this family. Their daughter Ashley has the same kind of leukemia as Kendrie, but relapsed this past October. Although I cannot even bear to imagine what they are going through, their 21-month old son was also diagnosed with leukemia this past week. I found myself thinking, “There is no way that I could handle that” and then remembered how much I hate people saying that to me, so I shut up. Instead, I’ll concentrate my energy on saying prayers for their whole family. Ashley’s Page

“Ouch! Crap! What are you doing?? Stop it, that HURTS!!” Do you guys know what that sound is? It’s the noise coming from the DEAD HORSE I am beating!!! Several of you have wonderfully let us know (most recently, big thanks to Nadine M!) that you have donated blood, but CNN released a report today that the US Blood Banks are in a critical condition. I am putting a small excerpt of the article below, just to give you an idea and encourage you to donate. Blaine, who has donated regularly for years, received craptastic news when he was told last week that his bout with cancer earlier this year renders him ineligible as a blood donor for FIVE YEARS. Although he was told there has never been a documented case of a person “catching” cancer from a blood donation (and especially in his case where the entire tumor was removed with no chemotherapy or radiation) they said public fear regarding the blood supply means they won’t even take his. It’s a crying shame, to be that desperate for blood and not be able to take from someone willing to give.

So PLEASE, if you are eligible, go donate. Give up an hour of your time and possibly help save someone’s life. I really like the idea another parent on my list serve had --- instead of giving something UP for a New Year's Resolution, resolve instead to simply "give". I was planning on going again to donate (remember last time I tried Kendrie threw up on the floor, ick!) but given the crises regarding the blood supply, I am going to talk to Kendrie’s oncologist first. She and I are the same blood type and I want to make sure I could be available to direct donate to her, first. If he says it’s ok, though, I will be going down later this week to donate. It’s scary to think there simply isn’t enough blood out there. And remember, it's not just kids like Kendrie who need blood. The next car accident victim needing blood could be your son or daughter. Don’t make me beat this poor dead horse anymore.

@@@WASHINGTON (Reuters) -- U.S. blood banks appealed Monday for immediate donations as supplies dwindled throughout the country and some hospitals canceled non-emergency surgeries.

Blood inventories nationwide "have dropped well below a safe and adequate supply," according to a statement from the American Association of Blood Banks, the American Red Cross and America's Blood Centers.

Donations were falling in part due to holiday travel, bad weather in the West and a decline in blood drives, the organizations said. Certain blood types were nearly depleted, forcing some hospitals to postpone or cancel non-emergency surgeries, they said.

"If blood supplies do not immediately increase, patients, accident victims and those whose lives depend on regular transfusions, are at risk for not getting the blood they need," Health and Human Services Secretary Tommy Thompson said in a statement.

A national tracking system showed less than a two-day supply of blood, said Michelle Hudgins, a spokeswoman for the American Red Cross, which collects about half of the nation's blood. Blood banks prefer to have at least a five- to seven-day supply on hand, she said.

Millions of pints of donated blood are used each year to treat surgical patients, organ transplant recipients, accident victims and others. Blood has a shelf life of 42 days, so supplies need to be replenished continually.

Only about 5 percent of eligible Americans actually donate blood.@@@

So please, GO DONATE!!! Really, it's an hour of your time and could make a huge difference!

Thanks so much for stopping by, sign the guestbook, take a quick peek at the photo album (new photos added today!) and have a great week! Much love to all, Kristie ps. Thanks, Michelle T, for dinner tonight, it was so nice to come home to!


WORST THING ABOUT HAVING CANCER TODAY: Yeah, that spinal tap went pretty well, but when I came to, there was a sore spot on my leg and an empty flu shot on the counter --- AGAIN!! IT'S A CONSPIRACY!!!

BEST THING ABOUT HAVING CANCER TODAY: Well, duh, that's a no-brainer. The treasure chest and the Winnie the Pooh puzzle I got afterwards!

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