FEELING BETTER TODAY, THANKS! (I'm talking about Kristie, not Kendrie)

199 Days to Go!

Hey do you see that? We have officially got LESS than 200 days of chemotherapy left, yippee! Have I mentioned to you lately that we are having Kendrie's Official Off-Treatment Party on December 18th, 2005 --- mark your calendars now!

First of all, three cheers (or prayers, or meditations, or chants and incense, or whatever floats your boat) for Jake, whose bone marrow aspiration on Friday showed NO bone marrow involvement in his relapse! This is really, truly, wonderful news. He’s still got a long road ahead of him and his parents and doctors have some tough decisions to make, but this is definitely a blessing and I’m so happy and grateful for their family.

Secondly, thanks to all of you who offered me kind words in the guestbook after my last *melancholy* journal entry. It’s extremely comforting to know that I can come here and throw a virtual temper tantrum, or virtual pity party for myself, stamp my foot on the “send” key, and actually have people tell me they feel the same way, or offer a note of support. Anyone who needs proof about the goodness of mankind just needs to spend a little time on Caringbridge.

Speaking of Caringbridge, we’ve received official notice that the “new and improved” Caringbridge will be unveiled on June 1 (and unavailable from 8pm until midnight CST on May 31.) Apparently, as per the e-mail I received, all CB sites established after that date will have a “new” look with “new” cool features. All of us with sites begun before that day will now be referred to as “Classic” sites. I don’t know who came up with that title, but it’s downright insulting to a 38 year old woman who spent an hour last night plucking the gray hairs out of her head. First my high-school glory days songs are “Golden Oldies” on the radio, I *NEVER* get carded for beer anymore, and now I’m a CaringBridge “Classic”????? I’d like nothing more than to pull up my knee-high support hose and give that person a good swift kick in the --- oh, never mind.

I’m going to talk a little more in my next journal entry about *why* I think I was melancholy earlier this week (I know, like my personal inner feelings aren’t boring enough now I feel the need to analyze them?!?!?) but for now, I’m going to end this journal entry with some photos. This is Memorial Day weekend here in the US of A, which means that Monday officially marks the beginning of summer. (Technically, I think summer doesn’t begin until June 20, and here in Georgia, it’s been summer-weather for over a month already, but I’m sticking to the holiday time-frame for ease of record-keeping purposes!) Many, many thanks to those serving (and those who have served) in the military.



Summer is a’coming, and this is how we spend it in middle Georgia!


Brayden and Kellen enjoy what is officially known at our house as our "poor man's pool".



"Holy Crap, it's cold in here!"



"Yeah, well, it's not as cold if you only stick your face in."



"For only fifty cents a day you could provide three nutritious meals to this starving child -- look at his bones sticking out!"



"Well, who cares if I'm skinny? When the sun is shining warm on my face and the water is cool on my body, that's all I need to be happy."



Ah, the fun of being a kid!


I hope you all have a great holiday weekend (at least what is left of it.) We are hoping to take the kids' fishing tomorrow, if the weather holds up, so the next pictures I put up will most likely be of Brayden catching a fish, Kellen squealing like a girl and refusing to touch it, and Kendrie rolling her eyes and baiting the next hook.

Thanks for checking in, Kristie

PS. Happy one-day early anniversary, Blaine. I'll be honest --- the first sixteen years were a lot more fun than the last two. Irregardless, I love you, picc line and staph infection and all. But let's work on the "getting better" and healthy-living thing, ok? :)

KENDRIE'S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Um, really nothing. I'm feeling pretty good today!

BEST PART ABOUT HAVING CANCER TODAY: I get to go to a birthday party for my cancer-buddy Jacob! Who knew that getting leukemia would mean I would actually make MORE friends???! Please go to Jacob's site and wish him a happy birthday!

Melancholy

202 Days to Go

melancholy: 1. a gloomy state of mind; dejection 2. thoughtfulness; pensiveness 3. a condition of depression and irritability formerly attributed to an excess of black bile 4. affected with melancholy; depressed; a melancholy mood.

“Crazy’ by Seal is the song I always put on this site when cancer is messing with my mind. Before you jump to any horrible assumptions, let me be quick to reassure you that Kendrie is fine …. Obnoxious and ornery and fabulous as always. *I*, however, am feeling a bit of melancholy. I’m pretty sure it’s not due to an excess of black bile, so I am much more quick to point the finger of blame at cancer. Specifically, leukemia. Even more specifically, Relapsed Leukemia.

I received the sad news yesterday that another little boy I know with leukemia has suffered a relapse. I say “another” because he’s not the first patient who has relapsed in the past few weeks. Sadly, he’s not the second, either. Or the even the third … he’s the fourth child I know of in the past five or six weeks. And those are only the kids I know from my online list and/or my clinic. Excuse my French, but WTF???

I understand that there isn’t anyone to BLAME …. But I need somebody with whom I can be upset!

(Step 1. Melancholy
Step 2. Anger)

And I wish I could find a way to express my deep-seated well of fear that we might be next. Shoot, that *anyone* would be next is depressing. Even more depressing is that it WILL happen, to someone. Until there is a cure, no child is “safe” or “well” or “guaranteed” a happily ever after. Sailing through treatment doesn’t count for anything, hell, **FINISHING** treatment doesn’t count for anything, just ask Clare from Maryland. Like I’ve said over and over and over …. cancer can come back anytime, in anyone. Leukemia, neuroblastoma, sarcoma, medulloblastoma, rhabdomyosarcoma.... I sometimes feel like I will never take a relaxed, deep breath again. Unless you hook me up to a nitrous oxide canister, then maybe I could just breathe deep until Kendrie is 60 years old and I no longer have to worry about a relapse for her. That might be preferable to the worry that constricts my throat and my heart sometimes until I can hardly breathe at all.

Thankfully, that fear isn't something I always carry around like the bags under my eyes. Most days we are a normal family (much like the Adams family is normal) doing normal things (which pretty much means arguing and bickering) thinking normal thoughts (like how many more days until the kids are back in school?) Most days, anyway. But it's always there in the back of my mind, a teeny-tiny niggle that I just can't get rid of, like the insufferable relative who shows up uninvited at a family reunion and as much as you try to ignore them .... there they are .... sitting in the corner ....smirking at you ... and they're just not going away.

You know the other thing that annoys me? I don’t mean to sound ungrateful and I certainly don’t want to look a gift horse in the mouth, but Caringbridge’s new policy about “No linking CB sites” anymore frustrates me to no end. These relapse families NEED support, and encouragement, and well-wishes. Sure, I can list them in this journal and leave the sites up for a few days, but once I update the journal, the links are gone. Since we can’t leave anyone’s CB address up on our site permanently, or with an easy link, it’s extremely difficult to offer the kind of virtual support that I KNOW is out there …..

I sure hope SOMEBODY at Caringbridge is listening to the frustration….. parents are saying the visits to their child’s sites are less and less; fewer guestbook entries … I’ve certainly noticed a drastic decline in the guestbook entries on Kendrie’s site that start out “I know you don’t know me, but I found your site on so-and-so’s site …..” Personally, I loved those and am sorry that doesn’t happen much anymore. Caringbridge has announced it will be unveiling some "new and improved" technology changes on June 1st .... I sure hope they address this problem and realize the vast majority of Caringbridge families do NOT like the new policy! (grumble grumble)

I DO, however, appreciate those of you who have us book-marked and continue to check in and leave us messages of support. If you’re going to leave a message today, though, please visit one of these other sites and let them know you heard about them through Kendrie’s site. I’m sure they would all be happy to hear from you. As awful as it is to be told your child has cancer, every parent I know who has gone through a relapse says it is a hundred times worse when you hear *those* words. The first time is terrifying, even with your blissful ignorance. This time, they KNOW what these precious kids are in for.

Victor from Pennsylvania, who relapsed last February, but just had his transplant two weeks ago and is thankfully doing well so far! I'm sure they are tired of being in the hospital and could use some words of encouragement. Even with Victor doing great, it's been a long road to get here and they still have a long ways to go.

Cameron from Connecticut, relapsed last year and had a bone marrow transplant with his brother Chad as donor. One year past transplant, this April, Cameron's family found out he relapsed again. Please drop Cameron some well-wishes!

Caleb from Washington, just started his re-induction this past week for his relapse that happened earlier this month, only four months away from finishing his final chemo. So, three years of chemo down the toilet .... Caleb starts over on a tougher protocol. I'm sorry, but that just sucks.

Clare from Maryland, who also relapsed earlier this month after sixteen months off-treatment. Clare had been done with her treatment for almost a year and half, and BAM, out of nowhere, the leukemia comes back. I can only imagine her family had just started relaxing ....

Jake from Georgia This is the one I'm having the most trouble swallowing today, simply because I just found out about Jake's relapse yesterday, and also because Jake is the one kid on this list that we have met personally. We've visited with his mom and dad in the clinic on occasion, and oohed and aahed over his adorable baby sister. They are reeling, and Jake is scheduled for his BMA on Friday to find out the severity of the relapse (like *any* relapse isn't severe?) But I know they are praying for no bone marrow involvement .... as we all are. If you can go to Jake's site, there is a guestbook link just like the Caringbridge sites and you can leave his family a note of support, as well.

There are so many other kids on my online list who are following relapse protocols. Fortunately, most are doing well. I have to remind myself that even with a relapse, leukemia still has a good chance of being beaten. For certain other types of pediatric cancers, a relapse is a death sentence. Leukemia is not like that .... but the path that lies ahead for these kids is not an easy one and I doubt any of the parents are sleeping too restfully these days. Please help lighten their loads by letting them know you are thinking of them.

Thanks,

Kristie
*******************************************************
KENDRIE'S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Hello?! Did you read that note??? I am not even sure what all that means, but I know it's pretty crappy.

BEST PART ABOUT HAVING CANCER TODAY: My mom felt so sorry for the school nurse and the fifty bazillion times I went to her office this school year that we took in a bouquet of flowers for her .... I think she really liked them. That made me feel happy.

"I WANT TO RIDE MY BICYCLE……"

207 Days to Go

Kendrie and I got to take part in a fun event not too long ago …. The Tour De Georgia Bike Race, which rolled through Macon recently. Dodge Tour de Georgia® is an annual, world-class, professional cycling stage race and series of city festivals across Georgia. Proceeds from the event benefit the Georgia Cancer Coalition, a statewide network of people and organizations working together to fight cancer. Dodge Tour de Georgia is sanctioned by the Union Cycliste Internationale and USA Cycling.



Now, by saying we “took part” I certainly hope you don’t think I meant we rode bikes --- first of all, I don’t even OWN a bike and I doubt Kendrie’s would be allowed since it still has training wheels on it. These were REAL cyclists ….. Lance Armstrong, and, ....um, ....well, other guys who are in the same league as Lance Armstrong. (PS It’s *really* tempting here to make a snide comment about Sheryl Crow being draped over him like a cheap suit, but out of respect for all he’s done with his Live Strong campaign, I’ll hold back.)



As mentioned above, the beneficiary of the race was the Georgia Cancer Coalition, which leads Georgia's comprehensive cancer initiative, uniting people and organizations to work together to save lives and reduce suffering from cancer. The Coalition held a Health Expo at each of the city sites, and when they came to Macon, we helped out in the CureSearch tent.


Kristin Connor, CureSearch representative; Jenny, Ryan, and Jacob, who wouldn't peek out from around his balloon; Kristie and Kendrie, and Jill George, Executive Director of CURE.

CureSearch represents the combined efforts of the Children’s Oncology Group (COG) and the National Childhood Cancer Foundation (NCCF), two organizations united by a common goal: finding a cure for childhood cancer. As partners in this search, each arm of CureSearch has vital responsibilities covering research, care, advocacy, and fund-raising. The shared vision of the CureSearch National Childhood Cancer Foundation and the Children’s Oncology Group is to reach the day when every child with cancer can be guaranteed a cure. Did you read that? “Reach the day when every child with cancer can be GUARANTEED a cure” ---- that is pretty much music to my ears.

CureSearch has year after year received the HIGHEST rating from the charity watchdogs. 94 percent of all monies raised go straight to research and education efforts related to childhood cancer (and nothing else). Only 6 percent goes to administrative costs.

If you know anything about charities, that is an amazing percentage. 94 percent goes to help find a cure for PEDIATRIC cancer. That, in my opinion, is heartening, and I’d like to ask all of you to visit the CureSearch website, to see if there is any way they can help you, or any way you can help them.

There are links for donations, ways to advocate, volunteer opportunities, sponsorship opportunities, information for families and patients, their annual Gold Ribbon Days, a community events calendar so you can look for happenings in your area, a Kids for CureSearch program so kids can help, they sponsor a Young Artists Program for kids with cancer and the siblings of kids with cancer ……. Lots and lots of neat things happening with CureSearch. You might have heard about the Major Baseball League Commissioners Initiative Fundraiser they organized last year, or this years Million Message goal, or the Hyundai Hope on Wheels fundraising/awareness project that is currently taking place across the country.

Also, CureSearch has a gift shop on their site under the “How You Can Help” link. They offer green wrist bands with a “Reach the Day” message, apparel, gifts and stationery. What I want to share with all of you today are these great t-shirts they have available. We got ours, like I mentioned, when we worked in the Cure Search booth at the Bike Race. I’ve purchased a few to give as gifts …. And I have to tell you, I don’t think I’ve seen anything that sums up my feelings any better.


Front of shirt


Back of shirt


I strongly encourage you to visit their website. Whether you are a patient or family member, or someone who simply would like an opportunity to help fight and defeat childhood cancer, CureSearch has something for you. (No, I’m not a paid spokesperson; I just believe in what they are trying to accomplish!)

Hope you all have a great weekend,

Kristie
************************************************
KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Can you believe, can you even believe, that I have a stinkin’ ear infection? I’ve been fussing for a day or two so the old people in my house broke down and took me to the doctor this morning …. And now I have to take yet another yucky medicine for the next five days …. Wow, does that blow or what?

BEST PART ABOUT HAVING CANCER TODAY: Well, at least I should be all better by my next t-ball game …. Good thing, because no one can hold down that shortstop position better than me! I also do a good job of rearranging the dirt by my feet when I’m a little bored, but overall, I’m paying pretty close attention.

OH, AND YOUR AGE IS SHOWING: (This is Kristie “talking”) I took the kids to their elementary school Variety Show last night, where the teachers, staff, and a few of the students do talent-type routines and put on a performance … it’s a fundraiser for the Student Council. Last night’s theme was “Let’s Go To The Movies” and they had each grade level do a song/dance performance for movies from different decades. Ie, for the 50’s it was a song from Grease, for the 70’s it was a song and dance from Saturday Night Fever, etc. Well, up popped “The 80’s” on the screen, and the next thing you heard was ……………”Just put those old records on the shelf” ….. and the vice-principal slid across the stage in his big white shirt, sunglasses, white socks, and boxer shorts, a la Tom Cruise in Risky Business. The majority of the audience were parents, so we of course were cracking up (it would be even funnier if you actually KNEW this man!) and Kendrie turned to me, horrified and laughing at the same time, and squealed, “What is he thinking??? He doesn’t have any pants on!”

What a sad, sad world we live in when my own kids are so young they have no appreciation for that classic scene from Risky Business…… truly, cinema at its finest. Personally, *I* thought it was a hoot.

THERE *ARE* ADVANTAGES, AFTER ALL ………………..

211 Days to Go


The Top Six Advantages to Having Your Cancer-Kid Come Home From School, Fatigued and Nauseous:

1) She can keep your fatigued and nauseous husband company.

2) Perfect excuse NOT to clean the house; I can’t run the vacuum when she’s napping.

3) Perfect excuse NOT to run those pesky errands; a nauseous child doesn’t want to be driving around in the car.

4) Perfect excuse NOT to exercise; I can’t be stuck on the treadmill in case my poor baby needs me.

5) Perfect excuse to order take-out dinner; the smell of cooking might upset her stomach.

And lastly,

6) Did I mention it was a perfect excuse not to exercise?

So, because I love my daughter more than anything, after the school called at 11am today to tell me Kendrie didn’t feel well, I drove there to pick her up and decided, although it would be a sacrifice, it was my duty as a caring, loving parent to sit next to her all afternoon on the sofa, reading my Harry Potter book while she rested, and I’d probably need to eat an Otis Spunkmeyer Chocolate-Chocolate Chip muffin while we quietly passed the time together. And I thought about the advantages that would provide, as listed above.

Imagine my surprise when I got to the school and discovered Kendrie in the cafeteria, three quarters of the way through her hot dog, laughing with her classmates. I pulled her out in the hallway and we had the following conversation:

Mom: “Kendrie, I thought you called Mommy because you didn’t feel good.”

Kendrie: “No, I feel ok”

Mom: “So why did you call Mommy?”

Kendrie: “I just missed you and wanted a hug and a kiss.”

Now really, how can you be mad at that? Especially when you realize that by the time she reaches Brayden’s age, there will be eye-rolling and shrugging of the shoulders and absolutely NO p.d.a. from a parent of any kind. But best of all, the half hour I spent at the school, finishing Kendrie’s lunch period with her today, meant that I *STILL* didn’t have time to exercise!

Hope you are all having a great week!

Kristie
********************************************************
KENDRIE’S PERSPECTIVE:

WORST THING ABOUT HAVING CANCER TODAY: My worst thing today is actually what is happening tomorrow --- driving to Atlanta for a needle-poke in my chest, chemo, and the beginning of Steroid Week …. Aaagh! That BETTER not mess up my t-ball game tomorrow night!

BEST THING ABOUT HAVING CANCER TODAY: Who knew my mom would drive up to the school just to give me a hug??? (Although something tells me she would do it for Brayden and Kellen, too, and cancer doesn’t really have anything to do with it.)

Holding Out For a Hero

214 Days to Go

HEROES come in many shapes and sizes. For most of us, when we are very young, our first hero is a mom or dad (depending on which one actually kills the spiders in the bathroom, kisses away the owies, and can get the lid off the jelly jar). Then, most children move into the more civic-minded phase of holding up police officers and fire fighters as heroes. My dad was a fire fighter, so I was lucky enough to be able to combine the two. (But mom was the one who could get the lid off the jelly jar!) Then, I sort of skipped the pre-teen/teen phase of looking to sports figures and celebrities as heroes. Sure, I’ll admit I had a small poster of Scott Baio on the wall of my bedroom (Hey, in those days, he was a grade-A, certified FOX!) but I was never over-the-top for anyone like that.

One of the questions on my 10-year high school reunion survey was to list my hero. That, and the question, “Who is the one person, living or dead, that you would most like to meet?” …. Well, those questions have always been difficult for me to answer. There might be a celebrity or two I enjoy, or a historical figure I think it would be interesting to meet, but no clear-cut HERO figure has ever stood out for me. And especially to be asked to narrow it down to ONE. If I hail Jonas Salk for his polio vaccine, does that diminish Benjamin Franklin’s electricity? To say Ghandi was the greatest peacemaker of all times seems somewhat insulting to Mother Theresa, know what I mean? And while I might not be Catholic, I’m still not taking any chances by being disrespectful about the most important nun I’ve ever heard of.

Fortunately, the world of pediatric cancer is one place where it is not only OK, but wonderful to have more than one Hero. Having a few hundred or thousand to rally around you can certainly be uplifting at times!

First, of course, are the kids themselves. I know all of you are already inspired by these kids and all they go through, or you wouldn’t spend your spare time browsing Caringbridge sites and offering notes of encouragement. So, I won’t dwell on that except to say Kendrie is indeed my hands-down hero in this whole mess. Even when she’s whining about taking her meds, because I know she’ll eventually suck it up and take them each night. And she knows she will, too, but sometimes in life a little pre-medication whining is simply in order.

Secondly, where would any of our kids be without the medical staff that takes care of them, plowing along with our families through this un-chartered territory? Sometimes it’s even un-chartered for them ….. but if you are lucky and have doctors, nurses, nurse-practitioners, anesthesiologists, therapists, child-life specialists, technicians, radiologists, pharmacists, etc etc etc that you like as much as we like ours, its makes the entire journey a lot more bearable. We still have seven months of treatment to go and I’m *already* stressing over what I can possibly do or make or buy or beg or borrow or steal at the end to show all these people how much I appreciate what they have done for Kendrie. If any of you have any suggestions, please leave them in the guestbook --- I am all ears.

Thirdly, and what I want to talk about today, are the people who aren’t in the medical field, but who still feel called to HELP in some way. I had no idea when we began this adventure of ours, how many kind, caring, compassionate people there are in the world. It’s always been hard for me to ask for help. I was the kind of kid who would walk home from school before I would ask for a ride. As an adult, I’ve gotten better (ie, lazier) and asking for help isn’t quite as awkward, but I still hate to do it. I’ve learned, however, through our experience with leukemia, that there are people out there who really want to help and just need to be pointed in a direction. Others have a direction already and have done things for our family that I didn’t even realize we needed!

We have been helped by so many charitable organizations that I am almost embarrassed, except that each one has been fabulous and none of them have made me feel like they were offering charity. Perhaps that’s the mark of a truly great hero --- someone who does something for you without making you feel awkward or indebted. The least I can do is mention some of them by name and make public my thanks to all of them.

Supersibs!, whose mission is to honor, support and recognize brothers and sisters of children with cancer. Brayden and Kellen have gotten lots of neat care packages from Supersibs, and have been made to feel special during a time when they might otherwise have gotten overlooked. If you have a child with cancer who has siblings, consider signing them up for Supersibs. If this sounds like an organization you would like to support, please visit their website for opportunities. Brayden and Kellen are definitely heroes in their own right, considering how their lives have been spun and changed and oftentimes put on hold, through no fault of their own, and I think Supersibs! is a great organization to recognize that.


The Lighthouse Family Retreat If you’ve been following our website since last summer, you already know about our wonderful week at the beach courtesy of the Lighthouse. Their mission is to serve children with cancer and their families at a seaside retreat and help them to laugh, restore family relationships, and find hope in God. Words can’t describe how great that week was. I strongly encourage you to visit their website and learn more about the amazing people who have dedicated themselves to this ministry. Also, poke around the site a bit for some great photos of a *certain* family enjoying themselves last summer …. especially one extremely flattering photo of a certain someone, who shall not be named (Blaine) in a grass skirt and adorable coconut bra. Blaine and I hope to someday return to the Lighthouse as Family Volunteers, but I’m afraid the coconut bra picture might deem us (well, HIM, anyway!) as mentally unstable.

Camp Sunshine provides recreational, educational, and support programs for children with cancer and their families, and provides them an opportunity to develop friendships with others experiencing similar challenges, to participate in activities that promote normal childhood development, and to assist in their fight against cancer. Camp Sunshine has been a big help to us, not only allowing us to enjoy thier twice-yearly Family Camp Weekends and various family activities, but also providing us with a local area support group these past six months, which has been great for us, and also serving as a way for us to connect and keep in touch with quasi-local families who are experiencing the same things we are experiencing as a cancer-family. If you live anywhere near the Atlanta area, you should really check them out.

The Make A Wish organization, who facilitated Kendrie’s wish trip to Disney in February. Despite how it might have appeared in my journal entries telling about the trip, I do not hold Make A Wish directly responsible for the complete and total decline in manners and behavior my children experienced during their stay in Florida. I haven’t quite decided WHO exactly I *do* hold responsible, but I’ll let you know when I find someone or something to blame.

Give Kids The World, the amazing resort where we stayed for Kendrie’s wish trip ….. Give Kids the World (GKTW) is a 51-acre, non-profit resort that invites children with life-threatening illnesses and their families to spend a cost-free, week-long vacation in the central Florida area. Those are the “official” stats for the resort --- but what it really is, the spirit and kindness and generosity that was shown to our family there, can’t easily be put into words. After we volunteer back at the Lighthouse, volunteering at Give Kids the World is next on our list. Magical. Truly.

Here is a perfect example of a Hero born out of an otherwise intolerable situation. Grianne Owen’s son Killian passed away from leukemia --- determined to help battle on, in his honor, she came up with Coaching for The Cure. The idea is simple. At the end of every sports season, the team parent generally takes up a collection of donations from the parents to buy a gift for their coach. What "Coaching for the Cure" offers is a way to donate those funds in honor of the team coach. By going to the website and printing out the donation form, Team Moms everywhere can help "Kids Kick Cancer"! Coaching for the Cure accepts the financial donation in honor of the Coach and sends a T-Shirt and certificate to be presented to the coach by the team. Coaches help and inspire their youth and what better way to teach the invaluable lesson of helping others than by the example of giving! Coaching for the Cure has signed an agreement with Curesearch (formerly the National Childhood Cancer Foundation) to launch the idea nationally in January 2005.

"While survival rates have increased in the last forty years, 1 in 4 children (some studies show 1 in 3) diagnosed with cancer still do not survive. This is particularly intolerable when doctors are now saying it is possible to find a cure for childhood cancer in our lifetime if we have the funding needed to support the research being done. With your support, we can turn childhood cancer from a killer disease to a curable one! Please join our team and help us Kick Childhood Cancer! If you have kids who play on organized sports teams, this is a great way to help --- become a HERO yourself!"


CURE Childhood Cancer was founded in 1975 as a non-profit organization dedicated to conquering childhood cancer through research, education and support of patients and their families. "Until there is a cure for every child diagnosed with cancer - CURE will be there." This is a great resource for families with diagnosed children and I highly recommend you check out their website.

Candlelighters Childhood Cancer Foundation is committed to the mission of providing support, education and advocacy for children and adolescents with cancer, survivors of childhood/adolescent cancer, their families and the professionals who care for them. This is another great resource for parents of kids with cancer, or anyone looking for information. We received several free publications at the time of Kendrie’s diagnosis which helped us a lot, and you should visit the site to see what they have to offer.

As you might remember, we took part in the Leukemia & Lymphoma’s Society Light the Night fundraising walk in Atlanta last October, with our team raising close to $4,000. The Light The Night® Walk is The Leukemia & Lymphoma Society's nationwide evening walk to raise awareness of blood cancers and funds for cures. Participants carry illuminated balloons to celebrate and commemorate lives touched by cancer. Funds raised support the Society's mission: cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.

There’s a little bit of controversy within the world of pediatric cancer and the fact that the vast majority of funds raised by LLS go towards research to cure adult cancers. The same controversy surrounds the LLS’s other major fundraiser, Team in Training activities. I’m not going to quote the actual percentages, because it’s depressingly low and that’s not the goal of this journal entry. I understand the stink …. and naturally I wish more of their funds went towards pediatric cancer research. But I consider LLS to be a “roundabout” hero and believe that any money raised will help in some manner….. also, I think that knowledge gained through adult cancer research can hopefully be applied towards our kids, to help them fight their battles as well.

Another "round-about" hero, in my opinion, is the American Cancer Society, whose Relay for Life walks are currently taking place all over the country. Relay For Life is a fun-filled overnight event designed to celebrate survivorship and raise money for research and programs of the American Cancer Society. During the event, teams of people gather at schools, fairgrounds, or parks and take turns walking or running laps. Each team tries to keep at least one team member on the track at all times.

Again, the stink is that the ACS only donates a minuscule percentage of its funds to pediatric cancer research. Just like the LLS, the reasoning is that cancer strikes more adults than it does children, so the vast majority of the money should fund adult cancer research. I understand that, but as the parent of a child with cancer, it’s very discouraging. Again, that’s not what I want to dwell on.

I thought I would share with you some photos of our local Relay for Life event that took place Friday night. The elementary school that my children attend put together a team of teachers and administrators, and was kind enough to include Kendrie, another student at the school who had AML, a parent volunteer, and Blaine, as their “honorary” team cancer-survivor members. We had never taken part in Relay for Life before (shoot, I’ll admit it, before Kendrie got cancer I had never even heard of it!) but it was a very neat event last night and I’m glad we did it.



Now, I am not a particularly emotional person, but have to tell you how poignant I found the survivor’s lap to be. That’s the first lap of the walk, where survivors walk one lap around the track, to a continuous standing ovation from all the teams at the campsites. Naturally, I was running from one spot on the track to the next, trying to stay ahead of the walkers and hoping to get some good photos of our team. Our team was bringing up the rear (and I mean the VERY rear!) and when I saw them walking past, waving to the crowd, and saw how cute Kendrie looked, something just came over me and I welled up while I watched them walk past. In fact, for a brief moment, it occurred to me that half of the most important people in my life were walking a “Cancer Survivors Walk” --- how surreal is that? My husband AND my daughter. I’m sure I’m not the only one in that unique position, but it was emotional for me, nonetheless. For about half a minute … then I had to run ahead to get another photo.



But my opinion is that even though the ACS and the LLS often receive a bad rap in the pediatric cancer world for not doing enough to help our kids ……… the thousands and thousands of “normal” people who walk the laps, and run the marathons, and ride the bikes and swim the lakes and hike the canyons and raise the money ---- THOSE people are Heroes, too!

Along those lines, I have a few individual people I’d like to spotlight, and one more organization, but that’s going to have to wait for the next journal entry. I’m worried this one is so long I’m going to blow out the Caringbridge servers as it is.

Mainly, I wanted to let everyone know that we appreciate all that our heroes, known and unknown to us, have done to make our lives easier these past two years.

Hope you are all having a great weekend,

Take care,

Kristie
******************************************************8
KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY:

Today was a pretty good day, although I was tired and grumpy from being out so late last night at the walk. Plus, mom bought me a blinky-light-necklace at the race last night and the cheap piece of crap didn’t work today. Ugh. And I was tired from doing that walk -- I don’t think I want to go back there ever, ever again.

BEST PART ABOUT HAVING CANCER TODAY:

Hey! Brayden found the battery that fell out of my blinky-necklace right before bedtime! How cool is that?? Now it works again! I LOVED that walk and can’t wait to go again and buy another necklace next year!

WOW, WHAT A DIFFERENCE A YEAR MAKES!

220 Days to Go

I know, I know, I’ve used “Wow, what a difference a Year Makes!” as a journal title already …. probably more than once, if anyone's keeping track. But when the treatment for childhood leukemia lasts 26 months (and that’s your BEST case scenario!) well, you’ve got *several* chances to compare snapshots in time, a year apart.

So speaking of snapshots, today’s journal entry will be primarily photographic. Not because I don’t have a lot to say (when do I NEVER not have a lot to say?) but because I want to get these recent pictures put up on the site. Then I’ll update again in a day or two in my usual lengthy, wordy, ongoing, Good-Heavens-does-she-ever-stop-talking-manner.

So, as a preview, check out this picture of Kendrie taken one year ago, when she attended Field Day at her brother and sister’s school in May of 2004:



How pathetic is that? She was seven months into her treatment, which means she was right about at the end of her Interim Maintenance #2 phase. Bald, fatigued, nauseous and miserable. Not since the time I took Blaine to a scrapbook store have I seen a person LESS interested in their surroundings.

Now, check her out as a participant in THIS year’s Field Day extravaganza:





Jesse Owens, eat your heart out! Have you ever seen such baton-passing skill???




I don't know whether to be impressed or amused by the look of concentration on this face!




And of course, because no Pre-K activity or event would be complete with Kendrie's boyfriend Nicholas by her side .... the requisite picture of the happy couple.


In case her athletic prowess isn’t evident enough, what with the Field Day photos of all the baton passing and ball bouncing and what-not, check out her t-ball skills from the first scrimmage of the season:



Running to first base after her turn at bat. I love the image of the kid in the background, falling down trying to field her ground ball. That's a pose that happens a LOT in t-ball!




Crossing home plate, to the roar of the crowd ...... (or at least the enthusiastic clapping of one middle-aged mom with a camera around her neck)




"Hey, as much as I like the hitting and the running part, I have to admit that tagging these guys out at first base is kind of fun .... maybe *defense* is my thing!"


So, if you are really, really, really, really, really lucky (and we are) this is what nineteen months of chemotherapy treatment for leukemia looks like. Happy, healthy, pink cheeked and glowing. In case you hadn't realized, kids fall on both ends of the spectrum with regards to side effects from these treatment protocols. Obviously, even with her occasional nausea and fatigue and bone and joint pain, Kendrie is WAY at the good end of the spectrum. Way. As in freakishly-way. We understand that the effects from the various chemos are often cumulative and we still have seven months to go. Don’t think for one second we don’t count our blessings every day. We do. And one of our biggest blessings just learned to tag first.

Hope you all had a great Mothers Day!

Love, Kristie

PS. If you have a spare second, please visit our friend Caleb’s site. Caleb was diagnosed with leukemia in July of 2002 and has been on chemotherapy for almost three years. Remember when Kendrie said boys get an extra year of chemo because they’re stinky? Well, the real reason is because the testicles are a sanctuary site for leukemia cells and the extra year of chemo is to make sure none of the cancer cells are hiding there. Unfortunately in Caleb’s case, they were, and he has “officially” relapsed, only four months away from being done with treatment.

That’s the thing about this disease that is so frustrating and frightening to me. You can take your medicine just like you’re supposed to, never miss a dose or a day, do everything your doctor tells you to do, avoid all the germs and never skip a doctor’s appointment and wash your hands and everything else …. And BAM, sometimes the cancer comes back anyway. It doesn’t matter if you’ve completed a month of chemo, or six months, or a year, or two years, or even if you’ve been off-treatment for a few years. There is no 100 percent guarantee that what we are doing is going to be enough to keep the leukemia away forever, and that just sucks. It’s random, and it’s terrifying.

Sucking even more for Caleb and his family is that his dad is currently serving in Iraq, so please say a prayer, not only for Caleb’s health, and Caleb's doctors and family as they make some difficult decisions regarding his care, but also that his Dad is able to travel safely back and be with his family. I’m sure they would appreciate some notes of encouragement if you have time to sign their guestbook. I know we love it; I’m sure they would, too.

Hey, it's not my fault!

224 Days to Go!

I made an amazing discovery this past weekend. Despite what I might have previously thought about genetics, laziness, personal responsibility, and an inability to push away from the dinner table, it’s not my fault I am fat. The Air Force is totally to blame. Or, to be more specific, the commissary. And not for the reason you might think …. the fact that whenever I shop the cookies and candy and junk food has a tendency to fly right off the shelf and into my cart …. No, the reason is much more sinister and under-handed. It’s those damn “Work for Tips Only” baggers.

As anyone who has ever shopped in a military grocery store knows, baggers work for tips only. A fact they bring to your attention over and over with at least a dozen signs on every check-stand and notices plastered all over the doors. Since I shop with a credit card and rarely carry cash, I often find myself at the commissary, frantically digging in the seat cushions in the van for spare change. That’s embarrassing, so I try to remember to carry a few dollars whenever I go.

Last Sunday I got to the commissary and realized all I had in my wallet was a twenty dollar bill. I don’t care *HOW* friendly and helpful the bagger might be …. short of doing the shopping FOR me, there’s no way I’m tipping someone twenty bucks. So I drove over to the BX to find something, anything to buy, to break my twenty. But since it was a Sunday morning, nothing was open. Nothing except the kiosk selling heaven on a plate: Cinnabon. Sure, I know what you’re thinking ….. I could have just bought a small coffee and gotten change --- but I don’t *drink* coffee and that seemed wasteful. And I certainly could have bought a diet soda and simply been on my way. But there stood the cashier at Cinnabon, who had been “Baking Fresh Daily” (I know that because I can read other signs, too, in addition to the “Baggers Work For Tips Only” signs) and there was no way I could NOT get a cinnamon roll …. She was so friendly, so customer-service oriented …. Plus, I'm pretty sure they lace the air surrounding the kiosk with some sort of opium additive or something. To NOT buy a cinnamon roll seemed rude, almost insulting. And to buy the roll and then throw it out, well, anyone who knows me knows THAT ain’t happening. So I bought the roll. To break the twenty. To get some change. To tip the bagger. Who works for tips only. Because that’s the way they do it at the commissary. So it’s the Air Force’s fault that I’m fat. If I didn’t have to tip the bagger I wouldn’t have to eat the roll. And for the record, I did not enjoy any part of the cinnamon roll. Even the yummy, gooey icing that I practically licked off the plate.

And as more evidence, check out the comment Kendrie made to me the other night: I was sitting in the living room with all the kids while Kellen showed us his muscles. (A favorite pastime of his; I have no idea why.) So then Brayden had to show her muscles, and then Kendrie. They asked to see my muscles, and as I raised my arm in my sleeveless shirt, Kendrie pointed to the flab hanging off my arm and said, “Oh, look, Mommy’s got muscles in the BOTTOM of her arm!” (To add insult to injury, Blaine has LOST fifteen pounds in the past month due to his surgeries ……………….. bastard. I won't have to look hard to find them.)

Other comments made by Escoe kids this week:

I made a new brunch casserole this past weekend which Kendrie obviously didn’t like, based on the terrible, scrunched up face she was making as she choked down the bites she was required to eat before being allowed to leave the table. I looked at her, and the awful face she was making, and said, “Do you really hate it that much?” to which she replied, “No, my face always looks like this when I’m eating eggs.”

Brayden, talking about a boy she has in her class: “You know how Kendrie is a girl but she wants to be a boy and dresses like a boy and we call her a TOM-boy? Well, J. in my class is a boy, but he acts like a girl and talks like a girl and says he wants to be a girl … so that makes him a Tom-Girl, right?” And all I could think was, “Honey, that is **SO** not what it makes him.”

And finally, my favorite, proof that our children are indeed watching us and listening to us when we’re not aware …… and you just never know what habits or comments they might begin to mimic and use for themselves. Kellen and Kendrie were in their bedroom last night, settling in to bed for the evening, when the dog must have passed gas …. You know, the heavenly aromatic fragrance of rose petals wafting in the breeze …. And Kellen said, “Eww, something stinks!” to which Kendrie replied with a giggle: “Maybe it’s your UPPER LIP!”

These kids crack me up.

Take care,

Kristie
******************************************************
KENDRIE’S PERSPECTIVE:

WORST PART ABOUT HAVING CANCER TODAY: Oh, this is SO easy. Last night was my first night of oral methotrexate since they increased my meds due to the roly-poly waistline I OBVIOUSLY inherited from my mother. So after taking my TWELVE pills last night, not only did I wake up this morning feeling crappy, and not only had my mom not refilled my Zofran prescription …. She wasn’t even home! Some crap about setting up for a Teacher Appreciation Breakfast. So Daddy had to take me to school, walk me to the nurses’ station, and get one of my zofran out of my school stash just so I could feel better before school started. Applications for my new mother figure will be accepted on Tuesdays after 4pm.

BEST PART ABOUT HAVING CANCER TODAY: Luckily she got the Zofran prescription refilled and I felt much better this evening … just in time for t-ball practice. My first scrimmage is Saturday; wish me luck! Can you believe there is a “no jewelry” policy and my mom had to get special permission for me to wear my medic alert bracelet? I guess on second thought …. She *does* have my best interest at heart, even if letting me run out of Zofran was a pretty big lapse on her part. She must have been daydreaming about a cinnamon roll.