Evan The Warrior

Evan's Escapades

We Will Recover!

 

Have you heard any number of the speeches that have been given in our country lately? It seems there is a lot to say. I found the hero Capt's speech before the Gov't panel riveting and the short speech Lance Armstrong gave here this weekend, right or wrong, a testament to the sometimes miracles cancer can create. I applaud both. On television yesterday, we heard yet another enthusiastic speech, this time, from our President. I agree with the notion of recovery, as a country, and more,as individuals. Did I really hear him speak of cancer, and in particular, a cure? Lo and behold, the connection to a cure and our future.

I hope that you had occasion to enjoy the show-biz glamour the Academy put on in our City of Angels. I particularly enjoyed the personal vignettes given by former iconic stars and the teary eyed nominees who received these words, each in their own way honored, as winners, regardless of whether they got to hold the coveted Oscar. I enjoyed the Oscars not only for the momentary diversion they provided for me, but also for the dreams and hopes they represent for little girls in bathrooms holding shampoo bottles and for the precious children in Mumbai, who smiled with every ounce of their being here in the US, despite soon flying back to the slums they call home. How I love the independent film!

Most importantly, I watch the Oscars every year because my favorite award, which is probably not what you would expect, gets a moment front and center stage, regardless of the fact that the winners of this award and their speeches do not ever get our famous Miracle Mile town abuzz. Notable to me is the Award presentation for Documentary 2008, which speaks to the tremendous responsibility that befalls a documentarian.

I am so grateful that I live in a country that allows me to put Evan’s story out, but the living with his cancer and then the taking it upon myself to write about the experience is an incredible responsibility. Documenting cancer is so much like the process of writing a speech and, more, like the making of a reality piece. The truth of the words and worlds of cancer bespeaks to me of a trust and incredible responsibility given to me by my son. I liken the responsibility I have to Evan and to you, the reader, each time I post a Carepage, to the words spoken by some of our most respected makers of the documentary. Recall these words:

It really has been a revelation, what has happened. You can go out and tell a high quality story…that doesn’t mean you have a story to tell. You have to be lucky enough in life that you are at the right place, at the right time, with the right subject. The thing that’s unique about documentary is that we deal with real life. We are dealing with people in real situations and there’s something to be learned from their experience. So much of what goes into the making or the telling off a documentary is the trust that’s entrusted to you to get it right. I’m completely obsessive when I’m working because you feel like that’s your responsibility, that’s what you have to do, that’s the trust that has been given to you. And, with absolutely every fiber of your being you have to be completely true to that story. You hope that what you experience in the moment…when you're there, you know, the joy, the sorrow, whatever, the surprise… something that you can communicate to an audience, so that if you don’t, you leave a story in the editing room, a story that could have persevered…,you lose something that could have illuminated.

For me, most of the time the subject of Evan's cancer, i.e. the living through it, can be likened to the many wads of crumpled paper thrown upon the floor when one prepares a speech. Living with cancer, whether as the patient or the caregiver, causes many thoughts, hopes and dreams to lie, unfinished and altogether changed, crumpled and left by the wastepaper basket. Ream after ream of edited and unedited film and photo lie idle, broken and cut on our computer. Cancer causes scores of proposed ideas for Carepages to go unfinished, and scene after scene to be changed unwittingly. Cancer causes whole dialogues I have with my son and myself and the physicians to become remarkably foreign in substance, changed due to unforeseen circumstances or left by the wayside, in some ill fated and old forgotten way. Needless to say, I am a huge fan of the documentary and the living and the knowing that films such as these portray.

It goes something like this,as I think about the posting: I must prepare a Carepage. Hasn’t it been almost a week or more since we last posted? What would Evan have me write? .

This past week was about steroids and the rain and the cancelled trip to the hospital. No one wants to read about the seven hours by the phone frantic to get a new appointment,or the pitfalls of not getting rescheduled, as it relates to subsequent doses of chemicals. . The focus is wrong.

For Evan, this week was not about carepages, medicine, doctors or clouds. The week just passed, for Evan, was about the hike up the hill and his speech and everything he was doing in the moments when he wasn’t feeling sick or rehearsing.

What can I possibly write about that will document my son’s nearing the 100th week of chemotherapy? I wonder if I posted the scores of medications this child has ingested, if anyone would believe the colossal amounts? I can barely fathom, much less report, the medication records of my son….Something like one thousand doses, of medicine, of chemicals and poisons and he is only one halfway ”there”. How can I ask the gentle reader praying for Evan’s health to absorb this number?
Back to this Carepage post. Crumple up another page. And another. And another. And so it goes. Speeches and past living, left unwritten, unspoken… in favor of the moment.

Cancer does that. It crumples up page after page of plans, hopes and dreams and everyday thoughts. Cancer changes not just the thoughts that make our days, or the words on the page. Cancer changes the very lines on the paper. The lines on the page aren’t so defined. Goals blur. Tears stain. Tiredness beyond lab values sets in. Thoughts merge into one long treatment cycle, day after day after day. The good in the change is that the days and the thoughts become very simple, much like the paper we used in Preschool as we learned to write our name. Big paper, big names.

Sometimes the Carepage doesn’t get written. But, I know one simple thing. Today IS the gift and for just this one day, I hope Evan has a good day. I pray each and every moment that he feels alive when he wakes. I hope to God he learns today and more than that, much more than that, I pray that he laughs and loves, even if it is just his puppy or a chuckle at a show on TV. Was it Paul Newman who said there are two kinds of people…those who love and laugh and those who do not? I think he got it, you know…in fact, I know he did.

Evan wrote a speech this week too. No, my little man didn’t stand before a great and grandiose audience to give his speech, but to this thespian mom, it was just as notable. He prepared a speech for his Toastmaster assignment on, the making of a sword…something he deems essential to a warrior. The most recent Flip Videos on evanthewarrior's youTube channel are more for the Scouts, and the children and Evan’s educators than for the general reader, but available.

Clinic went well last week, albeit late, due to Storm Watch in our neck of the woods. Somehow the living in Los Angeles… with all its news, weather, money and whatever else seems to be falling from the sky, prevented us from making our appointment, a first cancellation in 18 months. Somehow, it never really sinks in that I cannot realistically plan anything, with cancer as my guide. However, with that said, I profess NEVER to reschedule a hospital visit again. Sometimes I forget, just for a second, that this is -- this is-- a hospital setting and this is a very serious disease and these are extremely busy clinic with beds booked months in advance, not to mention given up to the newly diagnosed. Changing horses in the middle of a rainstorm is not always easy, like the rescheduling of the eldest’s cleaning at the dentist. Many thanks to Dr. M’s esteemed Fellow for seeing us one day late and helping me to land Evan back on course for the next and subsequent doses. What a difference a day makes! Evan’s numbers look good. No medicine changes were made, although they could have been. The thought is that with Evan now ingesting 125% of chemotherapeutic doses, to up them even further, rapidly, could wreck havoc with his counts. We don’t want that. I make a mental note to post soon to explain to the children, especially, about “how good Evan looks”, and how that relates to blood counts and blood cancer and chemotherapy and the famed immune system…but there I go again with a plan for a Post.

Last, but certainly not least, this week Evan and I celebrate one of the most astoundingly talented and silent rising stars among us. Ryan celebrates his 14th birthday. Happy Birthday Ryan! Ryan is the heart of me, just as Evan is the soul, at least in my role as their mom. Ryan, I honor and applaud your request to remain relatively anonymous here on the stage they call cancer, but today it simply must be said that not a second of my day goes by that I do not feel immense pride and total joy at the simple and astounding gift that comes with knowing you and watching you grow. I am exceedingly pleased at your path and the progress you make in life, seemingly despite the circumstances. You are a solidly respectful, intelligent and stoically sensitive and compassionate young man and I am so proud to be your Mom. I honor you, on your special day, and always. May all good wishes, hopes, health & dreams be yours, forever & ever. I love you, Ryan.

In parting, words from Slumdog Millionaire: ‘Jai Ho'. May the victory be yours! We will recover! These are the sentiments I treasure, along with you, the reader.
xoxo,
mom

The Kanzius Machine: A Follow Up

Hope Survives

 

"There was one scene I could not forget and that was the young children came in with smiles and a week later see those smiles disappear and so forth and literally would watch them waste away."

John Kanzius (March 1, 1944 – February 18, 2009) 

 By: Lori Hope
As a journalist and communications consultant, I equate getting a story on the CBS News show, 60 Minutes, to hitting the jackpot (except that luck rarely plays more than a very small role). So when I saw a story last spring about a side effect-free cancer treatment and possible cure in development, I became breathless and tearful with hope.

The 60 Minutes piece was about a retired TV and radio station owner and engineer who dedicated his life to curing cancer after being haunted by the hollow faces of children suffering from leukemia, the cancer he’d been diagnosed with six years earlier.

“The Kanzius Machine: A Cancer Cure?” tells the story of John Kanzius (pronounced “Kansas”), who in a lightbulb moment that flashed in the middle of the night when side effects from chemotherapy kept him from sleeping, realized that he could use radio waves to fight cancer. He began rummaging through his kitchen cabinets for some pans to begin construction of a machine that would ultimately lead to the destruction of tumors in rabbits and rats.

John Kanzius died on February 18. And although it’s horribly unfair that he did not get to realize his dream of seeing his machine destroy a tumor in a human, the hope he inspired in millions lives on.

The John Kanzius Research Foundation states on its website:

“John’s passing, at a hospital near his winter home in Sanibel, Florida, has come at a time when his cancer invention was entering the final stages of animal testing and nearing the time when it would become available for human clinical trials.

The Foundation was formed shortly after John announced his invention, the Kanzius External Radio Frequency (RF) System, as a way to update the progress of his efforts, which have soared at a rapid pace.

‘We will not stop until John’s vision becomes reality,” said Maryann Yochim, president of the Kanzius Cancer Research Foundation. “Our only regret at this point is that John will not be here to see the first cancer patient cured with his technology. But, we believe strongly that this will happen. It’s only a matter of time.’”

Time is of the absolute essence for those of us who have been punched by cancer. And on the Kanzius Foundation site, one hears an eerie reminder of that. With every passing second, a counter ticks to mark how many cancer deaths have occurred this year. Right now it’s 80,787; in a minute and a half, the counter will change to 80,788, when one more person has died of this horrid disease.

Please watch "The Kanzius Machine: A Cancer Cure?". to keep your hope alive. Interestingly, it hails from a show that’s signature sound is the ticking of a stopwatch.

Stand Up To Cancer!

Amgen Tour Of California 2009 Pictures

The Amgen Tour Of California started Stage 7 of their race in Santa Clarita on February 21st, 2009. This year, the Amgen Tour of California has enjoyed extra fanfare thanks to seven-time Tour de France winner Lance Armstrong's participation. He vowed to ride in a select number of races this year to raise awareness for cancer.   And while it was clear that Lance Armstrong brought the most publicity to this year's race, he was quick to support Lipheimer, his Astana teammate, who looks to be well on his way to a third consecutive Amgen Tour of California win. Armstrong related Leipheimer's task to his own previous situations, just one day after Leipheimer won the Solvang time trial  by a mere 8 seconds, beating out four-time U.S. National Individual Time Trial Champion David Zabriskie of Garmin-Slipstream.   Lance Armstrong "Its one thing to have the pressure in year one, year two, but as you start to build a string of victories it's not easy," he said. "But at the end of the day he stepped up, and not only did he win, but he beat guys that are damn good." Hear Armstrong's comments by clicking the player below. Listen Now! (Click Green Arrow Below) See all the pictures from the race below! To read the full article regarding this exciting day, click here.

Sometimes It Takes More

This reminds me of the simple act of Love and how it can bring Hope to a child, when it seems all Hope is gone..

Happy Valentine's Day

It's About Life...

                      

National Donor Day – February 14

              

February 14 is National Donor Day.  The need for organs, marrow, and blood is critical.  Approximately 130,000 are in need of organ, marrow, blood stem cell, or cord blood transplants; and, every two seconds, someone in the United States needs blood.

Here are a few ways to help:

• Fill out an organ and tissue donation card and register with your State Donor Registry (make sure your family knows you want to be a donor).

• Join the National Registry as a potential donor of marrow and blood stem cells.

• Learn how you can donate your baby's umbilical cord blood stem cells at birth.

• Donate Blood

                                                         

Numbers, Lemonade and Haircuts

by A J's Dad

 

Tonight, a young lady 6 days from her bone marrow transplant posted in the PAC2 Story Room. In the Story Room, people have shared their, well...stories, every Monday night since August 2008. Tonight, she sent a solid reminder that she is not a number. Not a statistic. And, in honor of President Obama's first press conference, I thought I would also interject some thoughts on how this country deals with childhood cancers and compare that to how we deal with other national tragedies. So, to brush the dust off this post from last August....

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Numbers
That's 46 kids in the picture. All happy, healthy, athletic, having fun, goofing around, innocent. That's the number of kids who will be diagnosed with cancer today.

And tomorrow. And the day after. All through next week. All month. All year. Ad infinitum. Until we stop it.

Look again, totally randomly, 7, black, white, orange, yellow, brown, green, 2 days old, 20 years old, it don’t matter. That’s the number of kids who will die from cancer today.

And tomorrow. And the day after. All through next week. All month. All year. Ad infinitum. Until we stop it.

When you read the stats, when you see the numbers, NEVER EVER forget that those numbers have NAMES...faces full of love, Moms & Dads, brothers & sisters, friends & families, hopes & and dreams.......futures.

Lemonade & Haircuts
Isn't it a shame that the richest nation, with the highest standard of living, the greatest world power, the country that went to the moon, has to rely on kids selling lemonade while their parents get their heads shaved bald to try to stop the #1 killer of our children?

While it sounds like a bad comedy, I put forth that it is a tragedy.

It’s up to our kids to sell enough lemonade? Up to us to get our heads shaved bald? To get petitions signed?

They even agree! And write about it! Picking Up the Pace - Igniting progress in the cure of children with cancer

To paraphrase - “we must enlist friends and families of children with cancer to secure funding for research” ! What?

What are the last 2 national tragedies you remember? The Challenger and 9-11? Did they call the astronaut's families and ask them to assist on determining the failure temperature of the O-rings? Did they tell the victim’s friends, we need you to come in and help us figure this war thing out?

I know how they felt. I will never forget the days/months in the hospital. The feelings of powerlessness, out-of-controlness. Not that I didn’t advocate, research, learn, fight for, scream. But inside, sometimes it seemed my primary function every day was to not only do the stuff to support Age, but, at the time, to me, importantly, NOT step on the medium green colored tiles on my trips back and forth to the break room for ice, snacks, coffee, whatever. THAT to me was the only thing that I could truly control about all the things going on. And it was my goal to NEVER EVER step on one, and then everything would be OK. Sounds ridiculous now doesn’t it? But I bet the 9th floor nurses knew what I was doing after awhile, had seen someone like me before, weaving back and forth as I walked down the hall, looking down balancing plates and spilling 2 cups of coffee. When you are fighting the war as a parent, it is hard to do much more that truly affects the reality, your journey, or the outcome. So you do what you do.

So let’s keep doing what we’re doing, apparently they need us to. It makes more sense than not stepping on medium green colored tiles. I guess.

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“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.” - Margaret Mead

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Love You Age
U2 Pret!!
AJs Dad

Alex's Story

AJ truly is a remarkable young man. He was born during a blizzard in March 1993, and to this day I remember him not crying and breathing right after being born, and the doctor and nurses rushing around in the delivery room. But after he took that first breath, boy did he breath deep the rest of his life. He lived life, loved sports and played football, hockey, track and soccer hard and at a championship level. He was always smiling. He loved people, music, playing the guitar, animals, movies, good books. He thought. He had fun; always made people laugh, did the right things, did everything at 110%, and was simply just a joy to be around. He was the love of our lives, truly the most evolved person I have ever known.

His sister Katelyn said, “AJ, you would say something to make me laugh or cry or think and I would just stare at you thinking how did you even think of that?” His best buddy Pablo said, “AJ’s character was like the sun: brilliant, golden, and able to light up the whole world”. Jimmy V would be proud of the way AJ lived.

Sadly and horribly, AJ was diagnosed with Burkitt's lymphoma and admitted to TX Children's Hospital on Fathers Day 2007. He fought bravely, elegantly and continually until January 5, 2008, when God decided that AJ was the only person on Earth who could do what needed to be done for Him. We miss him more than words can ever describe and will forever hold him in our hearts. He will always be Dad's "favorite son", Mom's "pistol" and Katelyn's "guitar hero".

We have decided to try to do something so that no other boys or girls or parents have to endure this pain and suffering. Please visit the following website to help with our fight.

http://www.thepetitionsite.com/1/CureChildhoodCancer

Hi Guys! Evan Here.

 

Mom says it's time for me to do a Carepage, which is fine with me. She’s gonna type and I’m gonna talk, cause there is no way I can type all this. Then, when I'm done, I'm gonna go outside and stand in the R-A-I-N! Or something FUN!

So, well, how is everyone? I am ‘good’. I would be better if I didn’t have this STU*** cancer, but, like I said, I feel pretty good. Hey, and I can take all of my pills now without applesauce. Mom throws them in my mouth 5 at a time and I can do it with just water. I still can’t have anything to eat for two hours before I take them, but I usually get dessert, unless I forget. Then I have to STARVE till morning. Mom always tells me to wake her up if I am starving in the middle of the night. But I always sleep and never do that.

Oh, our laptop smashed on the floor. That was a “big trouble, big mess” around here. Oh, and I got the stomach flu, but that’s all gone now. I felt sorry for my Mom, cause she kept getting it back, over and over. We were having races to the bathroom. She won most of the time. She said the flu was acting like one of those super balls that go CRAZY if you throw them in a room and they hit the walls. You know those black super balls? The real ones? If ya want to know where they sell them, go to Saugus Drugs…

I got to see my grandparents. They came for ten days from Virginia and took me to their hotel three times. I ate cheeseburgers as big as my head and like, 500 French fries.

We played games and watched new movies and when they were over here we took long walks. It was cool. We found the coolest beehives. Check these out.

I didn’t spend the night at their hotel, but I stayed for long visits. I asked them why they came and they said it was because they wanted to see me. Last year when they came, I was in the hospital almost the whole time.

I am done with my steroids for this month. YAHOO! I have figured out what to eat and not eat each time I have to take those pills. The thing I really don’t like is that I get high sugars when I take the pills and THEN, low sugars after the steroids are done and that makes me dizzy and nauseous and shaking a lot. It happens for a long time after I finish my steroids. It was even happening today and Mom was outta OJ, so I got to have a juice box, which I never get-only in emergencies. I wish she would run outta them too, and then I could have soda. Now THAT would be like 47 carbs! Actually, I don’t know how many carbs. I just love carbs and I hate diabetes.

And cancer. I hate cancer. DUH.

Well, I have had school pretty much a lot and Mr. B makes it fun. Sometimes I don’t want to do school and then after he leaves I always say: “That was soooooo much fun!”, so I guess I really like it. I’m pretty much a normal kid who doesn’t want to have to go to school and then I like it when I do. We are going to study rocks next, which is very cool.

I have to go back to the hospital after Valentine’s Day, but it is close enough to Valentine’s Day that I am going to bring my nurses the biggest candy heart box full of candy that Mom can find. Maybe even two boxes. I hope Mom will get three boxes because then there will be an extra one for me. I will try not to poke my finger in the pieces looking for the Carmel ones, but who knows. The nurses will probably just laugh and eat them anyway.

OK, this is getting really looooooooong. I just want to say two more things. I hope Buddy and Baby Jack in Philadelphia feel better and, oh yeah, Jacob too. If Jacob starts feeling better, then I can see Micah over here again. It’s so dumb that if the brother’s are sick, we can’t play. Mom says it’s the flu. So feel better, so then we can play.
I am online with the Wii a lot now, so if any of ya wanna play, well then call me. I’m pretty much available any time. I like Mario Kart Wii the best. (Phone number beeped out-Mom says email me)

One last thing, thanks to Highlands for the Recycle today. We were worried about all the pouring rain, and everybody carrying umbrellas and cans too. Big Evan’s Mom and Betsy, you guys ROCK! So does AQMS Movers for the truck and the guys who always help Betsy sort through all that.

OK, OK, OK…Can I play Wii now Mom?

Cul8r,
Evan, Evan the Warrior, ETW, Evie Spaghetti, E-man

If you want to read my Carepage, just sign up at http://www.carepages.com/carepages/evanthewarrior

If you want to email me, you can write to me at evanthewarrior@sbcglobal.net

Bye, bye!

Every Two Seconds Someone Needs Blood

It's in their blood...

Steelers' Aaron Smith can't say enough good things about the many Pittsburghers who donated because his 5-year-old son has cancer

Sunday, January 25, 2009

By Ron Cook, Pittsburgh Post-Gazette

 

Steve Mellon/Post-Gazette

Steelers defensive end Aaron Smith thanks blood donors Jesse Profota, left, of McKees Rocks, and Rich Maenza, of Wexford, during the Steelers Locker Room Blood Drive Dec. 26. Smith's 5-year-old son, Elijah, was diagnosed in Oct. 2008 with leukemia and requires blood transfusions as part of his treatment.

Come Together