SPT Challenge April 28

The final self-portrait challenge for the month of April, as per Lelly of Lelly's Musings was to "Gift a Stranger".

The first idea I considered was to anonymously pick up the tab for a stranger in a restaurant -- someone did that for us once and it totally rocked! But the one rule Lelly stipulated was that we weren't supposed to spend any money on our gifts. So, I went back to the only real gift I ever give strangers .... the one I *should* give more often .... the one we should ALL give more often.



Good ole' fashioned blood donation.

I've been a pretty vocal proponent of blood donations on this site in the past, especially when Kendrie was on leukemia treatment and we were on the RECEIVING end of the donations.

Less than an hour of your time, you can potentially help save up to three lives, and, best of all, cookies and juice afterwards. Seriously people, its a win-win!!

If you'd like to know more about it, you can read here and get my personal perspective on the good it does all of us.

If you'd like to know more about the time I totally and completely lost my shit over the future (or lack thereof) of humanity, you can read here and see why I should perhaps consider tranquilizers for myself.

WHERE THE HECK DID I GO?

AND DID I ACCOMPLISH ANYTHING WHILE I WAS THERE?

(The answers are “Nowhere” and “Probably Not”)

I want to say a sincere thanks to all of you for not only putting up with my vent in the last journal entry about bone marrow donations, but also for letting me know how many of you donate blood, plasma and platelets on a regular basis, are signed up for the bone marrow registry, or are in the process of signing up, and are organ donors as well. Considering you’re all big-hearted enough to follow along on these Caringbridge sites, I suppose my rant was a “preaching to the choir” type of episode, but it still did my heart good to hear from so many of you and hear firsthand about the compassion and kindness that’s still in the world.

To answer a few questions from the guestbook --- yes! Pregnant women can donate their baby’s cord blood, and you can go to The Site to find out how. Yes, there is a charge for non-minorities to sign up for the marrow registry, but that fee is sometimes waived at drives, if there is enough funding or corporate sponsorship. Not sure about the bulging disc issue; I do know back problems can rule out a potential donor. Someone at the registry should be able to tell you for sure. 1-800-MARROW2 (1-800-627-7692)

Most importantly, remember that something as “small” as donating blood is not small at all, when someone in your family is receiving blood or blood products on a regular basis. I loved the comment in the guestbook (sorry, I’m too lazy to go back and see exactly who wrote it) about “if I gave to every worthwhile charity out there I’d be broke -- but I can give blood.” I gave on Monday. Felt pretty self-satisfied afterwards, too. And the Oreos weren't too damn bad, either. :)

Anyway, I thought I would give you a couple of real quick updates on entries I’ve written recently; to catch you up on what is happening in the Land of Escoe. First, remember when I wrote about putting out the soccer signs one morning and Kellen was being wardrobe-challenged and refused to change out of his pajamas and I figured so what? Who would see us anyway? Well, that question was answered at our school’s Open House Night, when one of the kindergarten teachers pulled me aside and told me she had driven past that very intersection, at that very same moment, and how cute it was seeing my son, dancing so happily in his Christmas pajamas and his sister’s pink sandals on the side of the road, and how it just made her day to see it first thing in the morning. Yeah. Great.

Then, remember my long post about what a tomboy Kendrie is, and how she would wear fatigues and Batman shirts to school every day and be perfectly happy, but that we had compromised with some “tomboy” clothes? Well, school has been in session almost one entire week and guess what she HASN’T worn yet --- Not once --- and what she told me she doesn’t **want** to wear (although she did have the decency to ask if it would hurt my feelings if she didn’t wear them) …………………….

Yep, you guessed it. The clothes are going back to the store, or on ebay if I can’t find the stupid receipt. And this? This little girl in camo shorts and a hunting t-shirt? Well, like so many of you said, she might be a tomboy, but at least she’s a happy tomboy. Thanks for making me feel better about my decision to leave her be.



For those of you who watch Disney Channel, doesn't her hairdo make her look like Hal from That's So Sadie??? Ha!

And so, it’s late and I’ll end this quickly, but not before asking you all for one more favor. Please visit Cam’s site and leave him and his family some hopeful words in his guestbook. They received bad news today regarding his relapse treatment and I’m sure some encouraging notes would be appreciated.

“I PRAYED ON IT, AND THE LORD TOLD ME ‘NO’.”

{warning: Very long, very rant-ish, did I mention very long? And even some bad words. And very long.}

I’ve gone back and forth on possible ways to type this particular journal entry. Initially, I had this really great song called “Shut Up and Smile” I planned to play, and I wanted to do a humorous entry about how when people bug me with their idiocy, I have to remind myself to (can you guess?) shut up and just smile. I intended for it to be a light-hearted entry, and started typing, only to go off on this tangent, which was not about humor and lightheartedness, but more about how stupid, selfish, shallow people really make me livid. So I deleted the whole thing and started over, reminding myself, “Self, remember, you catch more flies with honey than with vinegar”. But I hadn’t gotten through the first paragraph before I was venting again, and ripping into people, so I started over again. And again. And finally came to the conclusion that me throwing the equivalent of an internet temper tantrum wasn’t so entertaining after all. But, this just isn’t a subject I can make light of, so here goes:

Last week I attended a training session to become a volunteer for the National Bone Marrow Registry. There is a local organization here in Macon called Jay’s Hope, set up in memory of Baby Jay. Jay’s Hope is organizing bone marrow drives in and around the town where I live. Specifically, to try and find bone marrow matches for two teenage boys in our community; cancer patients {just like Kendrie} who, quite bluntly, are going to die unless matches are found so they can have transplants. So, Jay’s Hope is organizing these drives with the hope that someone will match one or both of these boys, or in the broader picture, match any of the thousands of people who are on the waiting list for a transplant. Looking desperately for a match. In a life-or-death situation, if a match isn’t found. Just to be sure I’m making myself clear: People DIE waiting for a match.

• A few statistics: Every year, more than 30,000 people are diagnosed with leukemia or other life-threatening blood diseases.

• Only 30 percent of all patients in need of a transplant find a matched donor within their family.

• On any given day, more than 3,000 patients are searching the NMDP registry for a matched donor.

•The National Marrow Donor Program is the hub of a worldwide network of more than 500 leading medical facilities in marrow and blood cell transplantation. Through this network, the NMDP facilitates an average of 200 marrow or blood cell transplants each month and has helped give more than 20,000 patients a second chance at life.

• Each year more than 35,000 children and adults in the United States are diagnosed with diseases for which a marrow or blood cell transplant could be a cure.

• A transplant requires matching tissue types between patient and donor. These tissue types are inherited, but 70 percent of patients do not have a matched donor in their family.

• These patients and their physicians can turn to the NMDP for help with the search for a match and for support through every step of the transplant journey.

*************************

So, ok, that’s that. We’ve established **why** this is important. These are people whose lives are literally in the balance, and if no-one in their family is a match, they turn to the registry. What if no-one there is a match, either? They sit, and wait, and get sicker and sicker, and hope someone who *is* a match signs up. Before. It. Is. Too. Late. I signed up to be a marrow donor over ten years ago, and I’ve never been called, but that’s ok. At least I know I’m on the list and if I could ever help save a life, they’ll know how to find me.

I know it’s clichéd, but imagine how you would feel if it was someone in your family … YOUR CHILD … looking for a match and not finding it. It breaks my heart to think of these two local boys, and the fear that their families are facing. The technology is out there, ready and able to possibly save these kids, but without a matched donor, it doesn’t do anybody any good. The clock is ticking, for them, and for thousands of others.

I was pleased when Cindy, Jay’s mom, contacted me to tell me of the bone marrow drives they were spear-heading and ask me if I’d like to help out. I went to one meeting to learn more about their plans, then to the training session. Then, I was scheduled to help with my first drive last weekend at a local church.

But, first, back to my training session. Since the bone marrow drives where I’ll be volunteering are already set up at local churches, there’s not much to be done by way of recruitment. Bone Marrow Registry representatives speak to the congregations, and those who are interested and willing to sign up will come to our pre-arranged area. Me and the other volunteers will do various tasks like help fill out paperwork and forms, answer questions regarding medical eligibility, help with collection kits, man the Requisite-Informative-Video station …….. and the job *I* want: passing out snacks and drinks afterwards.

WHY? You might ask, WHY do I want that job? Despite what you might think, it’s not because I’m lazy or because I want to sneak cookies for myself (ok, well, I’ll possibly sneak a cookie or two) but really, it’s not that.

It’s because while we were watching the training video, there was a part about how to handle people if they decline to sign up for the registry, and WHY IT’S OK IF PEOPLE DON’T WANT TO SIGN UP. A whole big extensive session about how no-one should ever feel pressured to sign up, and it’s such a personal decision, but one of huge responsibility, because what if someone signed up, actually wound up being a match for someone, and then backed out? Believe it or not, that happens, and the patients and their families, are, obviously, devastated.

So, I’m watching this portion of the video about how it’s OK if someone says no, thanks, they don’t want to be a donor, it’s really, really ok, no pressure, and all I can think are two things:

1) Why the HELL would someone NOT BE WILLING to be a donor? And,

2) Why the HELL would someone agree to be a donor and then change their mind after they were found to be a match?

If you can’t be a donor because of age restrictions, or personal medical history, I can understand that. There are a LOT of medical conditions that make a person not eligible to donate, and that sort of stuff can’t be helped. Blaine and Kendrie? Can NEVER be donors. But some of the reasons people were giving in this video (actors, just pretending, to help us prepare in case we encounter the same reasons) were just obnoxious. The only thing MORE obnoxious was the eye-rolling and indignant snorting that I was doing at my end of the table, because of how annoyed I was with the people in the video and their lame-ass excuses. Here are a few examples:

Person says, “I’m really scared of needles, I don’t think I want to donate.”

I’m supposed to say, “Well, I understand. The actual procedure to sign up is a cheek swab, no needles at all. But of course if you were ever found to be a match, there would obviously be needles involved. So if you’re afraid of needles, and don’t want to, we completely understand.”

What I would be more likely to say, “You’re scared of needles, you big baby? Oh, cry me a river! Do you have any idea how many needles these cancer kids get stuck in their arms, legs, chest, back, etc? And they don’t have any choice! So suck it up and help your fellow man, you asshole.”

Person says, “I’ve heard the operation to get the bone marrow out is painful. I don’t like pain. I don’t think I want to donate. Plus, I don’t really have the time for it.”

I’m supposed to say, “Well, there is some discomfort involved in a bone marrow aspiration, but it’s done under local or general anesthetic and most people feel back to normal in a few days. You most likely wouldn’t miss more than a day or two of work. But if you don’t want to, we completely understand.”

What I would be more likely to say, “#($&(#&$(#*&!!!! You’re willing to let someone DIE because YOU don’t want to experience any discomfort??? Or take a day off work? Are you THAT freaking important??? Give me a break! You are the most shallow, self-centered person I have ever met in my life! Get over yourself!”

And various other fantasy-conversations, all of which encompass me harassing people about how I hope THEIR kid never gets sick and needs a transplant, and do they think people with leukemia or lymphoma have any choice about being scared of needles or not liking pain? Or how when cancer kids’ veins are hard to stick, the nurses just keep digging until they get one because it’s not like they can elect not to get chemo or medication or transfusions that day. And how MY kid has had NUMEROUS bone marrow aspirations and she had no choice about it …..

It’s the same thing as people who refuse to donate blood. One stinking hour of their time, and they can’t be bothered.

I’m telling you, Seriously. I need a valium. Or some blood pressure medication. Or anger management classes. Or some vailium. Did I mention valium?? Maybe liquor.

It made me feel a little better that I was sitting with another cancer mom that I knew from our local support group, and that she felt the same way I did. Or at least she pretended to. In hindsight, she might have just been scared of me and my violent reaction, and agreeing with me out of fear.

So do you see? Do you see why I need to do nothing more than pass out cookies and juice? I’m not so sure that I’m the person *anyone* wants representing their volunteer group.

I feel strongly about this. Perhaps a little too strongly.

The drive was last Sunday, and we signed up over 140 people as potential donors --- that is fabulous!! I had to (and by “I”, I mean the group) turn down a few people for medical reasons, but I thanked them sincerely for their interest and willingness. I had one lady tell me she would volunteer for these two local boys, but she didn't want to be tested for anyone else and where should she mark that on the form? And I had two young ladies who changed their minds about signing up after asking me to describe what a bone marrow aspiration was really like. I told them honestly that since I have never had one, I don’t know, but that when my FOUR YEAR OLD DAUGHTER used to get them during her CANCER TREATMENT, as long as they gave her general anesthesia, she was back to normal by later that day. Trying to imply, obviously, that if a (ahem) FOUR YEAR OLD can do it, surely you can, too.

But then a fellow volunteer, one who actually attends the church we were at, told me she turned to another woman in the congregation earlier that morning to ask if she was going to sign up, and the woman said (and I quote): “I prayed on it and the Lord told me ‘no’”.

Really.

Seriously?

The Lord told you no???

And that has stuck in my craw for a week, hence the reason I'm not able to journal with mirth about my own lack of empathy.

So then, I was driving around town after the drive, listening to my Trans-Siberian Orchestra CD, Beethoven’s Last Night, which I love, love, love enough to marry, when one of the songs really touched me, and summed up this situation perfectly. I won’t give you the entire rock opera storyline, because this journal entry is too long already, but the gist of it is this: Beethoven, on his final night of life, has to choose between letting the Devil have his soul and his music forever, or saving the life of a child. This song represents Beethoven’s struggle over what his moral responsibility is, to this child he’s never seen before.

And that’s what these bone marrow drives are about. Our responsibility, as decent human beings, to help people who need it, if we possibly, possibly can.

Here are the words to the song, though. I find it incredibly beautiful, both the music and the message:

(by Paul O'Neill
Music By Paul O'Neill, Robert Kinkel, & Jon Oliva

Trans-Siberian Orchestra Lyrics - Who Is This Child Lyrics)

[BEETHOVEN SINGING]

WHO IS THIS CHILD
THAT I'VE NEVER SEEN BEFORE
WHO IS THIS CHILD
THAT I'VE NOT SEEN TILL THIS DAY

WHO DARES TO FALL ASLEEP
OUTSIDE MY DOOR
IF WE SHOULD WAIT AWHILE
I'M SURE SHE'LL GO AWAY

TO BE INVOLVED WITH THIS
WOULD SURELY NOT BE WISE
FOR IN THE FINAL WORD
SHE MEANS NOTHING TO ME

I LEARNED THE TRICK IS
THAT WE JUST AVOID HER EYES
AND THE QUESTION
WHAT SHE MEANS TO ...

WHAT IS THIS LIFE
THERE WILL BE OTHER LIVES
SOON TO ARRIVE
SURELY SOME WILL SURVIVE
SHE IS BUT ONE
AND THERE ARE MANY MORE
EACH THE SAME AS ANY OTHER

WHO IS THIS CHILD
WHAT DOES SHE MEAN TO ME
I CLOSE MY EYES
AND STILL HER FACE I SEE

SHE IS BUT ONE
HER KIND IS EVERYWHERE
CAN'T YOU SEE THERE'S NO WAY I SHOULD CARE

I NEED A MOMENT NOW
I HAVE TO CLEAR MY MIND
THERE IS A LIMIT LORD
JUST TO BEING KIND

THERE IS NO WAY IN LIFE
THAT EACH CHILD CAN BE SAVED
SHOULD I BE LOOKING WITH REGRET
AT EVERY GRAVE

THERE ARE NO GUARANTEES
IN LIFE SHE SHOULD BE WARNED
I'M NOT RESPONSIBLE FOR
THIS CHILD BEING BORN

I'M NOT RESPONSIBLE
IN ANY KIND OF WAY
FOR EVERY CHILD THAT LIFE CAN GATHER

WHAT IS THIS LIFE
THERE WILL BE OTHER LIVES
SOON TO ARRIVE
SURELY SOME WILL SURVIVE
SHE IS BUT ONE
AND THERE ARE MANY MORE
COULD THIS ONE LIFE REALLY MATTER

WHO IS THIS CHILD
WHAT DOES SHE MEAN TO ME
I CLOSE MY EYES
AND STILL HER FACE I SEE
SHE IS BUT ONE
HER KIND IS EVERYWHERE
CAN'T YOU SEE THERE'S NO WAY I SHOULD CARE

CAN YOU SEE IT IN THE NIGHT
CAN YOU FEEL THAT IT'S OUT THERE
IT'S THE ARCING OF A LIFE
AND IT'S HANGING IN THE AIR
THOUGH I TRY TO CLOSE MY EYES
AND PRETEND THAT I DON'T KNOW
IN MY HEART I JUST CAN'T LET IT GO

THERE HAS TO BE ANOTHER WAY FOR ME
A WAY THAT LEADS FROM THIS INSANITY
A WAY THAT LEADS FROM MY DESTRUCTION IN THIS WAY

CAN YOU SEE IT IN THE NIGHT
CAN YOU FEEL THAT IT'S OUT THERE
IT'S THE ARCING OF A LIFE
AND IT'S HANGING IN THE AIR
THOUGH I TRY TO CLOSE MY EYES
AND PRETEND THAT I DON'T KNOW
IN MY HEART
I JUST CAN'T LET IT GO

So maybe that lady prayed on it and the Lord told her no, but thank goodness for people like Cindy, who can't let it go and are doing something to help.


In the meantime, please do four things:

1. Donate blood, as often as possible. I’m spending tomorrow, my kids’ second day of school, donating for the first time since Nicolas’ birth, now that the eight-week wait is over. Labor Day is coming up and blood banks always run low around holidays, so please consider donating, too. (Thank you from the bottom of my heart if you already do, and you know who you are.) Blood donors saved Kendrie's life during her treatment --- please know that every pint in every location in the country makes a difference.

2. Consider signing up with the National Bone Marrow Registry.

3. Say a prayer that I get assigned to the cookie table next time, so all I have to do is shut up and smile.

4. Say a prayer for that woman. I’ve not often shared my religious beliefs on this site because I’m very private in that regard, but if she really prayed on it, and the Lord really told her NO, then I’m pretty sure she’s got some serious shit coming down the turnpike that he must need her to be ready for ---- you know, if he doesn’t want her all distracted with helping her fellow man or being a decent human being or any kind of worthless crap like that.

GOAL-ORIENTED

104 Days to Go!

I just have to say how funny it is to hear that so many of you share your homes with hair twirlers like Kellen. His new nickname, based on your suggestions, is “Tornado Head” (which is much better than what I was calling him {predictably} “Alfalfa”.) Based on everyone’s personal experience, I have great faith he will either stop twirling it on his own, twirl it until he’s 80 years old and there’s not enough left to twirl, or fall somewhere in between. At least we have it narrowed down, right? :) But the fact that so many other kids out there twirl their hair is really comforting.

Now, the fact that there are so many other duct-taped whoopee cushions out there is really, truly frightening! I wonder if the manufacturers of whoopee cushions and 3M Tape are in cahoots? And why is it that husbands nation-wide think anything can be fixed with duct-tape, a Phillips head screwdriver and bungee cords? Anyway, Kendrie’s popped in another spot, and is duct-taped yet again, so I fear the life of the whoopee cushion might be coming to a slow end at our house. Oh well, there’s always Christmas, right? And we could always try to find one with a remote control…..

At any rate, I wanted to talk to you for a minute about having goals. (But let me interject here that I have no idea what is up with this song. I had this journal entry in mind and searched iTunes for “goal” and this is what I got. It’s a little bizarre, actually, but I paid 99 cents for it and I’m going to use it, by golly!)

Now, where were we? Oh yes, GOALS. I have many goals in my life, most of which are unattainable. Even if I actually lost 40 pounds (Goal #1) and somehow contrived to meet Brad Pitt (Goal #2) I doubt I could convince him to leave Angelina Jolie and come live in my house with me (Goal #3). I’m not looking for any kind of relationship with the man, I’d just like him to hang around so I can look at his chiseled features and amazing biceps all day. But I digress.

One goal that I’ve had for years, that I’ve had much more success in meeting, is that of sitting down to dinner as a family every night. Some nights it’s hard to squeeze it in between soccer and gymnastics and homework, but we mange most nights to eat together at the kitchen table. My children usually meet their dinnertime goals as well, which seem to be, in no certain order:

**Don’t eat anything Mom cooks.

**Make sure Mom knows you don’t like what she cooked.

**Poke things around with your fork, looking like you have a very bad smell on your upper lip.

**Ask Dad repeatedly if there isn’t something else you could have, avoiding the grumpy look on Mom’s face.

**Refuse to eat your dinner and then ask for a snack ten minutes later because you are “still hungry”.

All of this “not eating” gives my kids lots of time to regale us with tales of school happenings, jokes, deep, profound comments about the meaning of life, and for us to listen to them practice their farting armpit skills. Last night was no exception. We also play a game called “Two Good” where the kids take turns telling us the two best things that happened that day. This is the gist of how our conversation went last night:

Kristie: “OK, Kellen, your turn. What were your two-goods today?”

Kellen: “Um, playing soccer at recess, and staying on the green card at school”

Blaine: “The green card means you didn’t get in trouble all day, right?”

Kristie: “Kellen, you’ve gotten the green card every day since school started … good job!”

Blaine: “Is that your goal, to go the whole year on green card?”

Kellen: “No, my goal is to live to be 100”

Kristie: “I thought your goal was to eat pizza at school every day this year.”

Kellen: “That was my old goal. My new goal is to live to be 100.”

Kristie, seeing an opportunity to work some life-lessons into the conversation: “Kellen, that’s a good goal. I can think of at least three things you could do to help you live to be 100. Can you tell me what one of them might be?”

Kellen, poking discontentedly at his meal, and sounding unenthusiastic: “Um, eat your vegetables?”

Kristie: “That’s right! Very good! Take a bite of that casserole. Now, Brayden, what about you? What would help a person live to be 100?”

And the conversation went back and forth for a moment while suggestions like “Don’t smoke” “Exercise” and “Take vitamins” were issued by Brayden and Kellen. I noticed Kendrie hadn’t spoken, so I turned to her and asked, “Kendrie, can you think of anything that would help Kellen live to be 100?”

And with the wisdom and clarity of her almost-six-year-old mind, she suggested, “Um, just don’t die?”

It’s really sobering when you realize your kindergartener is smarter than you are.

So, I’m going to suggest a few goals for you Caringbridge readers as well, this holiday weekend. First of all, please take a moment to visit the site of an online friend of ours who is having a very hard time right now, Clare from Maryland. As you might remember, she relapsed with her leukemia and had a transplant almost two months ago. She is having an extremely difficult time of things right now and could use some support. Please visit her site and leave a message of encouragement for Clare and her parents.

Secondly, I mentioned the strong need for blood donations in my last journal entry. Well, it was true then, but even more true now in the wake of Hurricane Katrina. Please, if you are able, take an hour out of your day to donate a pint of blood. Your can visit the Red Cross website to find a blood drive near you and sign up online to donate.

I’m going to leave you with some statistics about blood donation that are very interesting. I blatantly stole them off of Cali Ali’s page, a remarkable young woman who finished her ALL treatment just in time for her high school graduation, and is now preparing for her freshman year in college. Her mom Marey is a strong advocate of blood donation, and if you search the journal history on Ali’s site you can see pictures of Marey and her other daughter Lexi donating. Like Ali, Kendrie will never, in her entire life, be allowed to donate blood. So those of us who ARE able to donate …. should.

Here you go. Please read through this, paying particularly close attention to numbers 48 and 55 (hey, I only need to donate 40 times to reach my #1 Goal!) and then go donate yourself. Make that YOUR goal for this week!

Thanks,
Kristie

56 Facts About Blood and Blood Donation
One for each day between your blood donation!

1. 4.5 million Americans would die each year without life saving blood transfusions.
2. Approximately 32,000 pints of blood are used each day in the United States.
3. Every two seconds someone needs blood.
4. One out of every 10 people entering a hospital needs blood.
5. Just one pint of donated blood can help save as many as three people’s lives.
6. The average adult has 10 pints of blood in his or her body.
7. One unit of blood is roughly the equivalent of one pint.
8. Blood makes up about 7 percent of your body's weight.
9. A newborn baby has about one cup of blood in his or her body.
10. The average red blood cell transfusion is 3.4 pints.
11. Blood fights against infection and helps heal wounds, keeping you healthy.
12. There are four main blood types: A, B, AB and O. AB is the universal recipient and O negative is the universal donor.
13. Blood centers often run short of type O and B blood.
14. Shortages of all types of blood occur during the summer and winter holidays.
15. If all blood donors gave 2 to 4 times a year, it would help prevent blood shortages.
16. If you began donating blood at age 17 and donated every 56 days until you reached 76, you would have donated 48 gallons of blood.
17. About three gallons of blood supports the entire nation's blood needs for one minute.
18. Blood donation takes four steps: medical history, quick physical, donation, and snacks.
19. The actual blood donation usually takes less than 10 minutes. The entire process, from when you sign in to the time you leave, takes about 45 minutes.
20. Giving blood will not decrease your strength.
21. You cannot get AIDS or any other infectious disease by donating blood.
22. Fourteen tests, 11 of which are for infectious diseases, are performed on each unit of donated blood.
23. Any company, community organization, place of worship or individual may contact their local community blood center to host a blood drive.
24. People donate blood out of a sense of duty and community spirit, not to make money. They are not paid for their donation.
25. Much of today's medical care depends on a steady supply of blood from healthy donors.
26. One unit of blood can be separated into several components (red blood cells, white blood cells, plasma, platelets and cryoprecipitate).
27. Red blood cells carry oxygen to the body’s organs and tissue.
28. There are about one billion red blood cells in two to three drops of blood.
29. Red blood cells live about 120 days in the circulatory system.
30. Platelets help blood to clot and give those with leukemia and other cancers a chance to live.
31. Apheresis (ay-fur-ee-sis) is a special kind of blood donation that allows a donor to give specific blood components, such as platelets.
32. Donated red blood cells must be used within 42 days of collection.
33. Donated platelets must be used within five days of collection.
34. Plasma can be frozen and used for up to a year.
35. Plasma is a pale yellow mixture of water, proteins and salts.
36. Plasma, which is 90 percent water, constitutes 55 percent of blood volume.
37. Healthy bone marrow makes a constant supply of red cells, plasma and platelets.
38. People who have been in car accidents and suffered massive blood loss can need transfusions of 50 pints or more of red blood cells.
39. The average bone marrow transplant requires 120 units of platelets and about 20 units of red blood cells. Patients undergoing bone marrow transplants need platelets donations from about 120 people and red blood cells from about 20 people.
40. Severe burn victims can need 20 units of platelets during their treatment.
41. Children being treated for cancer, premature infants, and children having heart surgery need blood and platelets from donors of all types.
42. Anemic patients need blood transfusions to increase their iron levels.
43. Cancer, transplant and trauma patients and patients undergoing open-heart surgery require platelet transfusions to survive.
44. Sickle cell disease is an inherited disease that affects more than 80,000 people in the United States, 98 percent of whom are of African descent. Some patients with complications from severe sickle cell disease receive blood transfusions every month – up to 4 pints at a time.
45. In the days following the September 11 attacks, a half a million people donated blood.
46. Females receive 53 percent of blood transfused; males receive 47 percent.
47. 94 percent of all blood donors are registered voters.
48. 60 percent of the US population is eligible to donate – only 5 percent do on a yearly basis.
49. 17 percent of non-donors cite “never thought about it” as the main reason for not giving, while 15 percent say they’re “too busy.” The #1 reason donors say they give is because they “want to help others.”
50. After donating blood, you replace these red blood cells within 3 to 4 weeks. It takes eight weeks to restore the iron lost after donating.
51. Granulocytes, a type of white blood cell, roll along blood vessel walls in search of bacteria to eat.
52. White cells are the body's primary defense against infection.
53. There is no substitute for human blood.
54. It’s about Life.
55. Since a pint is pound, you lose a pound every time you donate blood.
56. Anyone who is in good health, is at least 17 years old, and weighs at least 110 pounds may donate blood every 56 days.


PS. BIG NEWS ALERT!!! Although the celebration isn’t until next weekend, tomorrow is actually Kendrie’s 6th Birthday! Please leave her a note in the guestbook, wishing her a happy birthday. I’ll be sure to update with party details and pictures next weekend. Then, be sure to go to Clare’s site and leave a kind note for her as well. Thanks!

Better with friends

Thanks to all of you for checking in on us when we returned from vacation -- it was great to hear from so many of you in the guestbook who were keeping us safe in your thoughts. I think we’ve fully recovered from our trip, although Blaine is still pitching a big one (or, as Kellen said tonight about Kendrie “Help her before she has a condition fit”) about paying that ticket… but being the law-abiding citizen that he is (well, except for breaking the law in the first place, of course) he’s going to pay it and be done with it.

The kids have settled back into school and Kendrie had her monthly chemo appointment today. She woke up in a good mood and ate a good breakfast, but half way to Atlanta she told me she didn’t feel well and wound up getting sick before we made it to the clinic. Yes, I know she’s on chemo … but I was still a little bit surprised since it was the first time in a long time that has happened to her. She did have her weekly oral methotrexate last night, so I’m chalking it up to that and will remember to pre-medicate her with Zofran (the anti-nausea medication that cost more for one pill than John Kerry’s entire campaign budget) next time.

When we got to clinic, we discovered our friends Madie and her mom Regina were there, and we also go to hang out with Catie and her mom and dad, Jenny and Tre’. Needless to say, it took Kendrie all of about three seconds to perk right up once she saw her friends. And Madie was a great distraction in the exam room, since Kendrie was pretty determined not to cry in front of her when she got her port accessed. Thanks, Madie!

I do feel compelled, however, to point out the obvious difference between the two girls. Both female, both five years old, but take a look at this picture and tell me what you see.



Madie, with the adorable floral peasant blouse with the billowing sleeves, leopard-print pants and zip-up, knee high black boots. Hair in a ponytail, and fingernail polish applied to her hands. Now look at Kendrie (who, by the way, dressed herself this morning. I take NO BLAME for this outfit!) Hiking boots, sweat pants, old Lion King sweatshirt and a ball cap. She is SO not a Miss America waiting to happen.

And here’s a photo of all three girls having their picnic in the infusion room at the clinic. Catie is having her inpatient chemo this week and we were so happy that our schedules overlapped.



l-r, Madie, Kendrie and Catie

Even better, this coming Sunday is the Lighthouse Family Retreat Annual Christmas Party, so we’ll get to see them again in just a few days!

Kendrie’s counts AGAIN are on the high side….. ANC of 2780. And that is at 125 percent of the oral methotrexate for the past month. The nurse practitioner said we would not tweak the meds up (again) until her counts have been high for three consecutive months. If they are high the next two months, they will bump up her 6MP. I know I should be happy that her ANC is staying strong, as that means her immune system isn’t too suppressed. She feels good, looks good, and is more than holding her own at school. But the neurotic, paranoid part of me worries that if the chemo isn’t that hard on her good cells, is it being as hard as it should on her cancer cells? Are we giving her *enough* chemo to kill all the leukemia cells??? Oh well, I’ll just focus on the fact she isn’t having any complications. Blessings right?

Speaking of blessings, if you are looking around this holiday season, thinking, “Wow, I’d really like to know what I can do to help my fellow man” (and you know you were thinking that, weren’t you?) then let me make a suggestion. Or TWO or THREE. First, make time between now and the New Year to donate blood. Blood banks traditionally run short during the holiday season and it’s not just the accident victims who need it --- it’s the kids and adults with illness, cancer, and bone marrow problems who need platelets and red blood cells on a regular basis.

Suggestion Number TWO is to contact The National Bone Marrow Registery and find out how you can register as a bone marrow donor. Not only do people die while waiting on an organ donor list, but people --- CHILDREN -- are waiting on the bone marrow list, desperately needing a transplant for survival, with no matches to be found. One such child is Taylor Krueger. Please let Taylor be the inspiration you need to sign up to be a bone marrow donor. I have been signed up as a donor for almost ten years and am starting to wonder if they will ever call me! But at least I know that if there is even the remote possibility that I could help save someone’s life …. Someone like Kendrie …. I’ve ready and waiting.

And finally, suggestion number three, if you are pregnant or someone you know is pregnant, consider donating your baby’s cord blood. Cord blood transplants are becoming more and more successful as treatment options and it’s easier for a relapsed cancer patient to find a cord blood match than a bone marrow match, so the potential for medical miracles with cord blood is huge. Check out Spencer Rocket’s web site if you don’t believe me. Huge, baby, HUGE!!! He is a walkin’, talkin’ success story!


Take care,
Kristie
############################################
KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: The indignity of mom dumping out the cooler in the van this morning when I told her I was going to be sick …. And her actually expecting me to use it. I looked like a college frat boy after an all-night kegger with my head in the ice chest. (Mom speaking --- “Hey, in my defense, we were doing 70 mph on the interstate. What did she expect me to do? Swivel around in the drivers seat and cup my hands under her mouth? It was the ice chest or my purse, so the ice chest was the obvious choice!” And she started steroids today. Ugh.)

BEST PART ABOUT HAVING CANCER TODAY: OK, lets’ be honest, cancer really stinks. But I have made some pretty good friends out of this whole sick-blood thing, and I was so happy to get to have lunch with Madie and Catie today!!! Madie, hope you are home resting ok, and Catie, hope your hospital stay is going well! See you both on Sunday!

***RANDOM THOUGHTS***

(How Random? Well, at least as random as a leukemia diagnosis, right?)

Week #2 of LTM

***Aug 19 – One year ago today, Kendrie got sick. We had company visiting and during lunch at a local restaurant she lay down in our laps at the table and fell fast asleep. She wouldn’t interact with the company, either; not even her Grandma Betty who was also visiting from out of state, which seemed odd. I assumed she was a little tired, or being a little shy. Maybe just a virus or something?

***Thank you so very much to our family friend Bruce G. for donating blood – again! Every time Mr. G. donates he sends a note to Kendrie through the American Red Cross to tell her he is thinking about her. We appreciate the notes, and even more, appreciate the donation on behalf of cancer kids everywhere! Please consider donating if you able. With Labor Day and end-of-summer holidays/traveling coming up, the Red Cross will be short of donations (as usual.) (Mrs. G, thanks for the pictures of those handsome boys and the nice note!!!)

***Thank you to my friend Kelly E. for donating blood with me last week. It is much more fun to donate with a friend, and even better when we skip the Red Cross juice and cookie and go to dinner at a restaurant afterwards instead!

***Happy, happy (one-day early) birthday to Jonah and Benjamin!! We wish all the best to you, your parents and your grandparents, and can’t wait until we get a chance to see you both again. Where has this year gone??? I’m sorry your present is late but one of the things I ordered is on back-order, ugh! It will be there soon!

***Quote (paraphrased) of the week, from Wilson's Mom, Belinda: “Yeah, sure, leukemia is the ‘good’ kind of cancer with a cure rate of 85 percent. But if the survival rate for playing soccer was 85 percent, would you let your kid play?”

***Have I mentioned what a wonderful job Kendrie’s school, teachers, staff and administration is doing with her, and of humoring my paranoia’s? She did come home sick one day this week (naturally, the day I had a bazillion errands planned) but over all, I couldn’t be more pleased with how everything is being handled.

*** Wish us luck tonight as this will be the first night Kendrie has to take 7 pills in the evening. Most nights it is one or one and a half, which I can crush up and put in applesauce. But I’m not sure we can effectively hide the powder of 7 pills in one spoonful of applesauce. I’m annoyed with myself because I’ve had mini m&ms in the house for two months, intending to “practice” pill swallowing with Kendrie. Each time, though, the novelty wears off and the kids wind up just eating all the m&ms. (They got their lack of will power from me.) Thankfully, the mountain of medicine only takes place on Thursdays ….

***Please stop by Christopher's site and wish him well. Christopher had his bone marrow transplant this week with his very brave sister Sam as the donor. Christopher, we hope this is the beginning of a road to total recovery for you! And good job, Sam!

***Finally, months after “meeting” online, I finally met in person another Robins AFB cancer mom. (Good grief, I hope there are only two of us!) Jenny, mom to Jacob, it was nice to get to visit with you today! I look forward to spending more time with you, maybe even on that bowling league!

I think that’s it for now. I’m sure there are more random thoughts (most of my thoughts fall into that category, after all) but I’ll keep this journal entry short. A few of you have e-mailed me privately about the song on the site. I’d like to take credit for discovering it, but it’s actually off the Disney “Home on the Range” soundtrack, by Tim McGraw. I still think it fits our situation perfectly, although it’s not as peppy as usual, so I’ll be changing it out soon. I figure for a song to be a Caringbridge success, at least one person has to tell me they’ve turned off their speakers because of me!

Hope you are all having a great week,

Kristie
###################################################
KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: I thought my mom would let up on the obsessive-compulsive cleaning thing when I started school but I actually think she’s worse. Did you know that she attached about eleven-teen itty, bitty, teeny tiny bottles of Purell to my backpack and each night when I come home she actually looks at them to make sure the levels have gone down so she knows I am using it???? What a freak.

BEST PART ABOUT HAVING CANCER TODAY: My mom told me that tomorrow at school a nice lady from the hospital is coming in to talk to my class about me. Well, not about ME, so much, as about leukemia, and ports, and being bald-headed. Wow, I’m pretty much famous, huh?

SOMETIMES WHAT YOU EXPECT IS NOT WHAT YOU GET

(or) “Not all the wild animals at the zoo are in cages!”

Do you realize that summer is almost over? At least if you live in our neck of the woods, where school starts in exactly three weeks, it’s almost over. So, in an attempt to incorporate some **FUN** into our summer (since taking my ungrateful children swimming every day does not, according to them, constitute enough **FUN** in their lives) I decided to make Kendrie’s clinic visit this week into something a little more adventurous.

Her appointment was early this morning, which means we drove up last night and stayed in a hotel. I had all three kids with me and decided to go up early and locate **FUN**. First choice was the zoo, but the Atlanta zoo apparently closes at 4:30 each day. I discovered this at noon, online at home, which is a two hour drive away, so realistically didn’t have enough time. **FUN** choice #2 was a place called Dunwoody Nature Preserve (animals are animals, right?) Unfortunately, our only brush with animals there was the screaming case of chigger bites I got on my legs after traipsing through the nature trails with my hot, sweaty, tired children. Have I mentioned they are also ungrateful?

I worried Kendrie might get tired and thought the stroller would be a good thing to have; Lord knows I wouldn’t want to have to carry her through the preserve …………. I now have a serious philanthropic desire to purchase signs for the Nature Preserve that let all the other moms know the trails are NOT stroller-friendly. So there I am, carrying the stroller over tree roots and inclines and boulders, itching from the chigger bites, sweating like a coal worker in Hades (did I mention that the heat index in Georgia yesterday was 115?) and my kids are going on and on and on about how bored they are and didn’t I bring anything good to drink besides water????

So we went back to the hotel with promises of swimming, the boring activity which got me in this mess in the first place, but which my children suddenly couldn’t WAIT to do. You can pretty much guess that five minutes before reaching the hotel, storm clouds floated over and the temperature dropped by about twenty degrees. Or maybe it just felt that much cooler since I wasn’t dragging a stroller and three un-drunk water bottles with me. That’s ok, it killed a half an hour, leaving me only four hours left in the hotel room with them before bedtime, refereeing their arguments over who got to sleep in which bed and whose room service meal was whose.

(sigh)

Kendrie’s appointment this morning went very well, after she got done being sick in the bathroom. Nothing like starting the day with a little barfing in a public restroom to remind you that your kid is on chemotherapy (just in case the bald head wasn’t enough of a reminder.) More on the medical front later -----

So, determined not to repeat my mistake from yesterday, after the appointment I took the kids to the REAL zoo, where I spent $112.00 (no lie) on admission, lunch, snacks, and ride tickets; walked my tired, sweaty body around the exhibits for three hours looking at sleeping animals; only to have the day end with all three kids saying, “Is that all?” as I tried to herd them out the gates at the end.

Does anyone have that speech about walking ten miles uphill to school both ways in the snow on a VHS tape that I can borrow???

Actually, we had a pretty fun time at the zoo. The kids were just mad that I wouldn’t buy them yet another snow-cone on the way out. (Ungrateful hooligans.) The Atlanta Zoo isn’t huge, but they have a pretty respectable gorilla/monkey exhibit and most of all, a Rock Climb that Kendrie attempted.



Atlanta Zoo, July 2004

You can’t tell by looking at this photo, but Kendrie made it up about 20 feet (approx 18 feet farther than I thought she would.) There was a lady standing by us watching her son go up next to Kendrie, and she made a nice comment about “Look how high she’s going …. How old did you say she was?” and in my moment of maternal pride, I couldn’t help but burst out “I know, and can you believe she had chemo this morning?!?”

Anyway, walking around looking at all these animals in their cages (natural habitats, if you want to be p.c.) I was thinking, yep, this sure isn’t the life these poor guys had planned. Imagine, you’ve got visions of a comfortable, cozy watering hole in Africa where you and your monkey buddies can lay around playing poker or telling jokes all day long until you get the urge to wander off and sniff some backsides or eat bugs off one another. And then somehow you find yourself in the Atlanta Zoo instead, with a bunch of goofy kids tapping on the glass windows of your home (those weren’t my kids) and making faces at you (ok, THOSE were my kids.) Not quite what you had envisioned, but all in all, things could be worse.

And that’s when I realized (oh yeah, you saw the analogy coming a mile away, didn’t you?) that we all have times in our lives when what we expect is not what we get. I can think of several for me personally, but I won’t bore you with the details of all of them. Primarily, of course, is *expecting* my children to be happy and beautiful and perfectly healthy. I thought their biggest medical concern would be inheriting my bad vision or lack of athletic skills. Instead, leukemia dropped a bomb on our family. But I guess two out of three isn’t so bad. Happy and beautiful, right? (although don’t tell Kellen I said he was beautiful like his sisters!)

And like the monkeys, I just have to sit back for a brief second to realize that although it’s not what I expected, it could certainly be worse. Kendrie is (knocking frantically on my wooden computer desk) doing amazingly well (boring medical stuff in the next paragraph.)

Her protocol, CCG-1991, has four arms of treatment. Kendrie was randomized to arm D which means she gets two Interim Maintenance phases and two Delayed Intensification treatment phases. These DI phases (according to the oncologist today) can almost be considered a “re-induction” because they are so hard-hitting. Many kids have complications and set backs with only one DI, let alone two. By the time kids with two DI’s get to this point in their protocol, their little bodies have been hit with harsh chemo for almost eight months. Their bone marrow is tired and often has trouble recovering by now. It can take weeks of delays and setbacks to even reach this point in the chemotherapy regimen. I had to remind myself of that when I saw her climbing that rock wall so far over my head this afternoon.

The medicine she got through her port today, and which I will be giving her in shot form for the next three nights here at home, like I did last week, is called Ara-C (cytarabine). It commonly causes counts to crash, fevers and nausea. At her appointment today her blood work showed that her counts are indeed starting to drop, which is to be expected. She is following (so far) the same pattern of her first DI, and needed a transfusion last time by the end of DI.

In a stroke of incredibly bad timing (or incredibly lucky timing, depending on your viewpoint) we are scheduled to attend a cancer family retreat at the beach the last week of DI. Although our road has not been too rocky, this retreat is something I really think would benefit my family at this time. Our friends and family, both physical and online, are amazingly supportive. (Yes, this means YOU, if you’re reading the journal!)

But a week at the beach to relax and regroup and reconnect as a family, without CANCER being the focal-point of our life for a few days, would be the perfect way to end the harsh chemo before Kendrie begins the “easier” maintenance phase of treatment.

In a sick and twisted manner, I am almost hoping that Kendrie’s counts go ahead and drop rapidly, so that if she needs a transfusion, she can get it before the retreat. Yes, there are doctors and nurses at the retreat, but I want that week to be about fun and playing and FORGETTING about leukemia for a change. We can’t do that if she is feeling rundown and tired from the chemo. And of course if she’s too run down, we simply won’t go at all. Not the end of the world, but disappointing nonetheless.

It’s odd to me to sit here and think about the last two weeks of DI and how I hope Kendrie’s counts recover enough to enjoy the retreat ………… because that means we are only two weeks away (barring any delays in treatment) from reaching long-term maintenance. I feel like I should end that sentence with a big ole’ exclamation point, but I don’t want to jinx it by celebrating too early.

Well, I’m rambling now. If you have an extra penny in your pocket and happen to be wandering by a fountain, please throw it in and say a wish that Kendrie feels recovered and good enough to attend this retreat. She would enjoy it. Her brother and sister would enjoy it. Blaine and I would enjoy it. Well, except for the sand, but we’ll get over that. And if the fountain you are passing happens to be in the Atlanta Zoo, look overheard and you might just see a 4-yr old rock climber who looks a little bit like a monkey.

Thanks for checking in and especially for signing the guestbook. The notes of encouragement mean a lot to us and we love seeing who has stopped by.

Have a great weekend,
Kristie

ps. To all my local friends ---- the Macon Red Cross Blood Donation Center (located behind Galleria Mall by Olive Garden) is now taking platelet donations. Many, many leukemia kids need both whole blood and platelet transfusions and you can make a huge difference by helping out with a donation. Donations for platelets are by appointment only and you can call Maureen Johnson, Donor Recruitment Rep for Central Georgia at 478-405-0195 ex 27 for more information. Have an hour to kill but forgot to make an appointment? No problem! Whole blood donations are on a walk in basis .......... so walk in and save a life!!!!

#####################################################

KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Well, I'd say throwing up at my doctor's office, but really, that was over pretty quickly.

BEST PART ABOUT HAVING CANCER TODAY: Going to the zoo after my appointment --- and my mom splurged on a family pass and says we can go back again. I’m going to keep trying until I make it all the way to the top of that rock climb!

Quick Update: Friday morning, 9am

Well, I am man enough to admit when I am wrong. Here I thought we were going to coast through this second DI with no complication ..... not that this is major, but after receiving her ara-c (second week, first dose) yesterday, Kendrie woke up vomiting at 4:30 am with a fever of 101.3. (of course, this is after the one night in a blue moon I was up until almost 3am surfing CB sites and updating hers .... figures ..... Terry, what was that about time management skills??? Ha!)

Because her ANC yesterday was 1100, the on-call doc (really nice guy, gracious even at 4:30 in the morning) said just to watch it for a little while. By 7am it had broken, but I just took it again and it's up to 101.9.

I'm going to call again, but after driving HOME from the clinic yesterday I'm not looking forward to turning around and driving back up there. Naturally I'll do whatever the docs say, but I'm hoping with a decent ANC and the ara-c from yesterday they might let us stay home and give Tylenol. (that's the lazy-I-was-sort-of-hoping-for-a-nap-today part of me talking!)

Anyway, wish us luck. Aren't I a goof to be so insulted by cancer??? :)

Update: Friday evening, 8 pm

The doctor did want to see Kendrie and draw cultures, so back into the van we went. Her fever has been at 100-101 all day. They are 99.9 percent sure its just the ara-c, but to be on the safe side, and to buy us 24 hours in case the cultures turn up positive, they went ahead and gave her iv antibiotics. Now they said we can treat her with tylenol for 24 hours and unless her fever goes high and doesn't break, we should be ok until the cultures come back--- almost assuredly negative.

I know she doesn't feel good because we (naturally) got stuck in Atlanta 5 pm traffic and the ride home took almost three hours. Instead of complaining, she just stared out the window with no expression on her face. She has had nothing to eat or drink all day today, which makes giving the 6TG easier tonight, but the thought of going in there with the sub-q injection of ara-c makes me feel very, very guilty.

I suppose that's what I get for being all cocky about breezing through DI #2!!! Note to self: tape big fat mouth shut! :)


Update: Saturday night

Well, we wound up going back in today for another blood culture and more iv rocephin. Her temp all morning was high and when it got to 102.8 (axillary) I felt like that was a pretty high temp no matter who you are. So, I called and they told us to go back in even though they are still almost positive it's the ara-c. Small blessings, though, this on-call doc suggested we go to the Children's Hospital here in Macon, only twenty minutes away. So it was only a three-hour visit to the ER instead of a seven-hour trip. And, he had called ahead and they were waiting for us and took us right back to a room in the pediatric ER, which was really nice.

Her cbc shows everything is dropping and her white count is almost nil, so the oncologist said if she's still running a fever tomorrow she will be admitted. I'm not going to complain though. We haven't been admitted one time since dx, so if a fever/neutropenia admit at the end of DI #2 is necessary, then at least I have 24 notice to pack a bag. :)

Wish us luck; hope everyone is having a nice weekend,

Easter Trip to DC

Week #2 of IM #2

OK, see if you can guess the correct answer to my statement:

“The coldest I have ever been in my life was when I……….”

A) Climbed Mount Everest with Sir Edmond Hillary

B) Raced the Iditarod

C) Had my initiation swim with the Polar Bear Club

D) Attended the 2004 Easter Egg Roll at the White House.

OK, so maybe I’m exaggerating. A little. But not a lot! Granted, I’ve never actually done letters A, B and C, but I’m still trying to warm up from letter D! I mean, we lived in North Dakota for four years, so I know cold ---- and it was COLD and wet and rainy in D.C. this weekend!!

But lots of fun too, which made the blue lips and chattering teeth worthwhile. I have to commend the White House staff, or whoever it is that is responsible, for the amazing event they put on at Easter. The “Egg Roll” itself takes only about four seconds from start to finish but is just one of many activities that take place on the White House lawn. Roaming characters, photo ops, musicians, clowns, magicians, TV entertainers, face painting, read-alongs, activities, give-aways, etc. Had the weather cooperated it truly would have been an amazing event. As it was, Kendrie refused to get out of her stroller, and Kellen cried because his hands got so cold (No reflection on the Mom of the family who packed completely inappropriate clothing, right? After all, it’s SPRING in Georgia! Who knew we would need warm clothes???) Brayden at least had fun, although she’s got a good cough now after refusing to carry an umbrella or even put the hood of her jacket up.



We wandered around for about half an hour, grabbed our goody bags and left. But it was still worth it and we’d do it again next year, given the opportunity. There are photos from the weekend in the album. On a funny note, the kids glanced up at the White House at one point and saw someone looking out a window. They are positively certain it was George or Laura Bush, admiring the festivities below. I am certain it was a White House landscaper, crying at the damage done by 16,000 guests on a muddy lawn.




The parts of our trip that made the entire weekend worthwhile were twofold. First, getting to enjoy the hospitality of our friends the Hyzys' who not only let us crash (ie., demolish) their guest suite downstairs (I’m telling you, it was bigger than my first apartment!) also let our kids pester their kids all weekend, played host and tour guide through several DC museums, and shared visitation rights from the Easter Bunny (*and* the Tooth Fairy; go Brayden!) but were kind enough to look the other way when Kendrie barfed her way through Union Station. Those incredibly expensive zofran tablets don’t do you any good when your Mom leaves them sitting on the dresser at the house, and you’re riding the Metro. (Gosh, that’s TWO big strikes against me last weekend, isn’t it?) We had such a good time and hope John, Julie, Brenna and Zack, and their home, survived the invasion.

Part two was getting the opportunity to meet so many wonderful families from my online support group, ALL-kids. I joined this list last November, shortly after Kendrie’s diagnosis and quite frankly, don’t know what I would have done without the advice, guidance, wisdom and support of the other parents. To meet some of them, and their funny, happy kids, was a real treat for our family.


l-r, Leah from VA, Kendrie, Julia from MD, Brandon from MD, and Christopher from MD.

We had an informal gathering Sunday night at the hotel while the grownups gabbed and the kids played for several hours, then met up again Monday morning to go to the White House together, as part of the National Childhood Cancer Foundation group. Thank you to this organization for making the tickets available and sponsoring the hotel gathering.





On a more somber note, one of the great kids we met this weekend, Christopher, (see picture above) attended the Egg Roll with us Monday morning, then had a routine spinal tap done on Monday afternoon. Tuesday his parents received word that Christopher has relapsed in his spinal fluid. I think “relapse” might be the worst word on the planet, second only to “cancer” or “leukemia” itself. But to see this kid, looking healthy, happy, no signs or symptoms on Monday morning, and then hear the news that Monday afternoon they found more leukemia cells in his spinal fluid after he’s already undergone 18 months of chemotherapy, is truly depressing. I can only imagine how his family must be feeling as they await word on where to go from here. If you have a minute, please drop Chris a line at his Caringbridge site. Chris from MD I’m sure they would appreciate the support.

Back at the home front, when the mail lady dropped off our mail today after holding it for four days, it was like someone broke off the top of a Christmas tree and shook it upside down over our house! I have several formal thank you notes to send out; Ms. Kelly, for the awesome Spiderman lunchbox, which Kendrie is sleeping with even as I type this; Ms. Brianna, for the fabulous care package that came today and made everyone happy, even Mom (Thanks for the note inside so we easily knew whose was whose! And we’ll deliver Madie’s as well!); Julianna Banana’s Aunt Tammy, who smuggled us a few more Julianna Banana Wish Bracelets so now Brayden and Kendrie can have their own and not try to steal mine all the time.



And the most inspiring piece of all – a notice from the American Red Cross and our good friend, Bruce G. from Connecticut, that he donated blood in Kendrie’s honor. I can’t do justice in words to the feeling of care and compassion I get when I think about people taking time from their day to donate blood, or put together a care package, or any of the many things people have done to let us know they are thinking of us. I hope everyone knows how very sincerely we appreciate it all.



Speaking of donating blood, I went last evening with my friend Kelly E and donated here in Georgia. Here’s a photo, so you can see how very UN-traumatic it is. See the big smiles on our faces? Those aren’t fake, or just for the camera. While I can’t speak for Kelly, I was excited to see they had Nutter-Butter cookies waiting, and THAT made me smile!! Thank you, Kelly, for joining me at the blood drive, and for dinner afterwards. If any one else has a few spare minutes this week, please consider donating blood as well.


Well, this is quite a disjointed journal entry, with no real clear beginning or end, but I had so many things I wanted to mention! If you’ve stuck with me this far, thanks! We are headed up to Atlanta for a chemo appointment tomorrow, then big plans this weekend, which I’ll tell you about in next week’s journal entry!

Hope you all had a great Easter,

Love, Kristie
#####################################################
KENDRIE'S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Hands down, the fact that Mom made me skip Kellen's first t-ball practice since it was so cold here. For pete's sake, Mom, I have cancer, not Snowman-melting disease!!!

BEST PART ABOUT HAVING CANCER TODAY: Well geez, did you even *read* the journal entry and hear about all the nice things people did for me and my family today?? How great is all that?!?

DEFINITION OF A HERO

WEEK 7, DI #1

I am a mother. I am also a cook, chauffeur, laundress, maid, homework-checker, lunch-packer, playdate organizer, and appointment planner, just to name a few. And occasionally, rarely, sometimes, in the eyes of my children, I get to be a HERO. Take last Wednesday for example. On our way to a playdate with friends at the park, I drove through the drive-through at Sonic (great rabbit-pellet ice; cups that don’t sweat) for drinks. I was in Blaine’s truck and the kids were on the bench-seat behind me. When I rolled down my window to place my order, a bee flew in the truck. NOT a giant, poisonous, mutant African stinging bee, but a teeny, tiny, not-much-bigger-than-a-fly bee. In the bee-world, this guy was definitely sitting way low on the totem pole. He was practically a Pre-Bee (a joke for the other leukemia parents that read this).

My children, of course, freak out. Especially my manly, rough, tough, all-boy son …. Who is squealing like a girl sitting in the front row of a Shawn Cassidy concert and practically climbing over the seat in front of him to escape the wrath of the gnat/bee. I wasn’t quite sure how to get the bee out since the back seat window doesn’t roll down. Kellen, being the great help that he is, starts screaming, “Get the skyscraper! Get the skyscraper!” I actually had to stop and think, before I realized he meant “ice scraper”, which I did, but couldn’t smack the thing with just the little pointy corner.

Finally, after several minutes frantically and unsuccessfully whacking the bee with the skyscraper, it occurred to me to simply open the back door to the truck (I know, I’m not the sharpest crayon in the box sometime) and the bee flew away, quite happily. At which point I got to bask in the glow of the “hero-dom” I acquired in the eyes of my children (especially my frantic, no-plans-to-be-a-beekeeper,-obviously-son.)

So who are *my* heroes? Today, I can think of three, collectively. First, all the medical staff, nurses, doctors and researchers who are working so hard to find a cure for leukemia, who have made such progress in the treatments to date, and who take care of my child on a daily basis. Truly, it’s more than a job, it’s a calling, and there is no way to thank them enough.

Secondly, Kendrie herself is a hero to me. Is it because she handles this battle with courage and grace? Is it because she suffers stoically the side effects from treatment, and bravely marches forward towards her ultimate cure, despite the harshness of the treatment itself?? It is the dignity and calm with which she faces each obstacle? Hell, no! She has a squeal that rivals her brother! She hates the treatment, the procedures, the medication---- and there isn’t a stoic bone in her body! But you know what? She gets through it anyway, despite how much she hates it, and that makes her my hero.

Lastly (for today; I reserve the right to add more heroes later) my hero is the anonymous person who donated blood in the Atlanta area sometime in the past 45 days. Kendrie’s count results from yesterday showed all of her counts dropped (as expected) and her hemoglobin dropped below the cut-off number for transfusion. So today we went up to the clinic so she could have the blood transfusion she needed to get her numbers back up to a safe level. Hemoglobin carries oxygen, and it was obvious by looking at her she didn’t have enough ….. pale complexion, pale lips, lots of naps. Three hours later, viola! Pink cheeks and energy to spare.

So who was this person who gave my daughter the gift of life today? I’ll never know. Our family is not allowed to direct donate to Kendrie in the event she might (God forbid) need a bone marrow transplant at some point in the future. If she were to receive blood from one of us, that would make that person ineligible to donate bone marrow to her if she were to relapse and need it. Of course family would be her best hope for a bone marrow match, so we can’t take ourselves out of the running like that (at least that is how it has been explained to me.)

So we depend on the kindness of strangers who are willing to donate blood for someone they don’t know. Someone who took an hour or two out of their schedule to give the precious gift of a blood or plasma or platelet donation. Someone who perhaps gave up a long lunch with friends and instead ate a sandwich at the donor center while donating. Someone who gave up a few hours at the gym, or the mall, or in front of their tv relaxing, so they could make a difference in the life of someone who needed help. Today that someone was my daughter and I am eternally grateful.

Please, consider donating yourself. If you’ve donated in the past, please do it again. Yes, it takes a few moments out of your day, but the positive ramifications of your selflessness are never-ending. GIVE LIFE 1-800-GIVE-LIFE (1-800-448-3543)

Stay tuned (stay tuned???? Who am I?? Jeff Probst???) for the new-and-improved Canadian list …. I had no idea how many cool Canadian things were out there, and will be sending out an updated version in my next journal entry. Thanks to all of you for your suggestions.

Kristie
#####################################################
KENDRIE'S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: The panic I felt when the nurse dropped my vial of blood and it shattered on the floor. Then I remembered my port was already accessed and I didn't have to get poked again.

BEST PART ABOUT HAVING CANCER TODAY: When my mom found out we would be making the drive to and from Atlanta today, plus spending six hours in the clinic, she went out and bought me a copy of "Daddy Day Care", my current favorite movie, to watch on our portable dvd player and keep myself entertained. At this rate, I'll have quite the little dvd collection before all is said and done! Watch out, Roper and Ebert!

SUPERMAN; SUPERDORK!

First of all, I have a few thank-you’s to toss around. One, to all the parents (and a few spouses, too) who let me add their Caring Bridge sites to our List of 100. Also, to the many wonderful people who took time to visit and sign guestbooks. I quickly came to realize that visiting all 100 sites was a teensy bit time consuming, to say the least. Attesting to this are my messy house, a mountain of dirty laundry, and the fact I fed my family Froot Loops for dinner last night. BUT! I made it to all 100 sites and signed all the guestbooks! (with a few exceptions; those non-CB sites that didn’t have guestbooks)

A couple of people have asked that I leave the list up a bit longer to give them more time to visit. No problem! I’ll leave the quiz up as well. Regarding the quiz answers, I have gotten a few private e-mails with “Answer Key” in the subject line, which I at first thought were people sending me their quiz answers. I soon realized they were actually spam because a) they looked like spam when I opened them, and b) they were quickly followed, from the same e-mail addresses, with lovely advertisements regarding the always-exciting male genitalia. So! If you want to send me the answers to the quiz, please put “CB” in the subject line so I don’t accidentally hyperlink myself to a Paris Hilton video. No offense to Paris, but there's a time and a place for everything. This just isn't it.

Remember, you have 24 hours more to finish up your 100, or get the quiz right, and I’ll make a donation to Caring Bridge in your name --- just let me know!

I’ve changed the front photo to one taken this weekend of Kendrie, in her new t-shirt sent by our dear friends Gary and Lisa D. from Illinois. Although you can’t see it in the picture, the logo on the shirt says “Scott AFB Blood Services”. This was the shirt Gary received for donating blood last week; he then sent the shirt to Kendrie, which I thought was icing on the cake (the cake being that he went down and donated blood in the first place!) Thank you, Gary and Lisa!

In the Put Up or Shut Up category, I also donated blood on Friday, and would like to encourage the rest of you to donate as soon as you can. I’ve heard some amazingly LAME excuses for why people can’t/won’t/don’t donate in the past few weeks. Whatever. I had a six-year window where four pregnancies and three tattoos threw me out of the running as well, but I’m back in the game now, every 56 days. Thanks to the rest of you who have taken the time, and gone to the effort. It means more than you can know!

Kendrie’s appointment on Friday went great. Blaine took her for the first time by himself (although did I accomplish anything productive that day by myself besides donating blood? No!) He was impressed, and said she handled all the chemo like a pro. In fact, while Nurse Mary was injecting her iv meds, Kendrie overheard the dramatic mud-pit scene from Homeward Bound on the tv in the playroom (you know, where Shadow falls in the mud pit and Chance and Sassy are begging him to get up and he falls back down…”I’m just too old” and then Chance jumps down there and says, “You got me this far, now I’m taking you the rest of the way; I WON’T let you give up!” …. Ah, I’m getting all goose-bumpy just thinking about it) ps. Can you tell we’ve watched Homeward Bound about a BILLION times in the past three months??? Anyway, Kendrie heard the movie and took off down the hall to see her favorite scene, never mind that she was accessed and receiving an IV push at the same time. Blaine said Mary just ran after her (what choice did she really have?) and finished up the meds in the playroom. Her counts were great, and we now have a two-week wait before her next visit, which will be the start of her Delayed Intensification Phase (boring medical details to follow in my next journal entry.)

So, one last silly story before I sign off for the evening. Tonight, the kids decided they wanted to put on a “show” for Blaine and me. Around our house, a “show” usually consists of the kids spending half an hour getting their costumes on and practicing in their bedroom (ah. Peace!) and then they stand in the living room and whisper to one another “what am I supposed to say?” and “I can’t remember what to do” all the while Blaine and I sit back, looking entertained and fascinated by their inherent dramatic acting skills. Tonight’s show seemed to be (I’m still not sure, but this was the gist of it) a heroine (Brayden) dressed in a red silk ball gown (looking suspiciously like her Halloween costume) trapped in a burning building, and two heroes (Kendrie and Kellen, blatantly using their Superman Halloween costumes, as well) who were supposed to (I think, this is where it gets a little confusing) fly around the room screaming at the top of their lungs before rescuing afore-mentioned heroine. Rescuing seemed to consist of pulling her out of the “building” (made of air) and then running around screaming some more. But half-way through, apparently Hero #2 (Kellen) forgot his lines and was just sort of running around squealing. In an attempt to prompt this Broadway-wannabe, Blaine said, “Kellen, what would Superman say in this situation?” and Kellen starts yelling at the top of his lungs, “CALL 9-1-1 !! CALL 9-1-1 !!!”

Oh my gosh. Let’s hope I’m never trapped in a burning building in need of a superhero.

Thanks for stopping by our website, and especially thank you for stopping by the other CB sites as well! Take care, Kristie
#######################################################
KENDRIE'S PERSPECTIVE:

WORST THING ABOUT HAVING CANCER TODAY: Bactrim on the weeknds. Ick. Need I say more?

BEST THING ABOUT HAVING CANCER TODAY: With my dinosaur dress and matching hat, I was the cutest 4-yr old at church today!

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!

#########################################################
KENDRIE'S PERSPECTIVE:

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!