Evan The Warrior

The Rest of the Story

And now, as Paul Harvey used to say…the rest of the story. Evan’s counts doubled yesterday to 443 and thus he gained discharge from CHLA after 17 days for neutropenic fever and three pneumonias. He needs to be in the 700s to afford him minimal infection fighting power, but the trend, from 20 on admission, is now upward. He was able to tolerate his oral meds and drink enough fluids not to require infusions. His anemia is under control and he has enough platelets to fight any bleeds. He remains on an antifungal antibiotic until such time as he is re CT scanned, in two to three weeks, to check his lung nodules for growth. So far he is tolerating this antifungal dose, although it was doubled upon discharge and causes dizziness.  For those wishing to read about his hospital course, the Carepages contain a daily accounting.

Evan is scheduled for an LP and the start of Phase Five chemo next week, but this process is count dependent. His numbers, both platelets and ANC must be in the 750 range. If they are low, he will be given another week to recuperate. In any event, he will return to Clinic/Day Hospital. Obviously, if he fevers in the meantime, we must go to the ER straightaway. Because Evan has a central IV line, any fever must be treated as soon as possible and as strongly as possible, because the source of the infection can and most probably is in his bloodstream.

He is at home visiting with his grandparents and Ryan and resting. He is very much in tune with his body and he quiets himself and rests when he feels the need. It’s going to take him some time to recover. I would imagine this admission has taken its toll on him and the aftereffects will be felt for quite some time. His request on the drive home yesterday was for Weinerschnitzel and a root beer and for dinner, spaghetti and apple pie. R U Kidding me??? Needless to say, he received and lo and behold, he ate! A few more meals like this and he will feel stronger, no doubt.

It is going to take me some time to personally shed the weight of this admission. While I am exceedingly, down on my knees, grateful for Evan’s course, and for your support, I am heavier now with the tonnage of great sadness that comes from day after day life in the bedside trenches and the snapshots that are plastered inside my mind of these valiant and heroic and heroically struggling champion children. The deeply frightening course Evan took and the families and their stories that we lived and left behind will need to be sorted out and sifted through in the days to come. Reentry into a world bigger than my child’s bedside and the cubicles of new friends will take some time. The world outside the hospital was just too big and too bright and spinning too fast for me to comprehend yesterday. Layer after layer of the brutal reality of childhood cancer blankets me now. I think I might just need some rest, a shower, a long walk in prayer and maybe even a root beer and a hot dog, too.

Look for pictures and posts in the days to come. There were so many moving and touching moments and stories that I would like to share. While some stories will lighten your heart, other stories will not be meant to entertain. But, I would invite you to entertain the idea of reading them, however sad, so as to honor the struggles and the champions that are these children. I had an amazing opportunity to truly step inside the world of hospitalized children fighting pediatric cancer…for too long, really, for me, and yet there… they are there, today- they remain, fighting. My gift basket of words and stories about these precious children is my way of staying close to them and honoring their fight, in whatever way is possible. If we turn our heads the other way, it could happen to us. Knowledge is power and we need great strides in powerful knowledge to defeat cancer.

Once again, thank you immensely for your posts and prayers and continuing support. I hope to see many of you soon…maybe in line at Weinershntzel!

To Our Kind Readers

Evan was admitted to CHLA twelve days ago for low counts, fever and three pneumonia. Please visit his carepage for nightly updates. Simply go to www.carepages.com and register once. His carepage name is:
evanthewarrior

Mom updates nightly. Thank you for checking in. Please let Evan hear from you.

Aunt Jemina

Jemina died. She was just 21 years old. The wonderful thing about her passing is that the disease that plagued her days was not the cause of her demise. She outlived the disease and all predictions of her anticipated life span by 6 years. She passed, peacefully, at her home, in Santa Barbara, California.

  Jemina was a crooked necked giraffe that lived high atop the hill, at the Santa Barbara Zoo. I used to visit Jemina with the boys once or twice each summer and I have always said that if I was an animal in a zoo, well, then, I would wish to be Jemina’s friend giraffe at the Santa Barbara Zoo. Jemina’s crooked neck and her graceful tall tall body could see high above the flowered trees, out over miles and miles of the glistening Pacific Ocean. The trees and the ocean were hers to peruse, day after splendid day. Oh, to be a giraffe at the Santa Barbara Zoo. I shall truly miss the sweet and loveable Jemina.

Evan does not remember Jemina. In fact, he does not remember much about our crazy summer sojourns down California Highway 101, camping whenever and wherever a Mom and her boys could squeeze into a space and staying as long as the Park Rangers would allow and then some. I remember so much about the smores and the summers and Jemina, by the ocean with my boys.

Evan sits and he listens intently to tale after funny tale, spun over longing and laughter by the eldest and me about our many, many days and just as many nights spent camping near Jemina and her friends. The more Evan doesn’t remember, the more we tell him. Evan’s longing to remember and his longing to go are some of the things that sit beside him, as he listens us remember. He sits some more and he says to us, after listening for a longer while,

“Wow. I guess we are just going to have to make some new memories for me to remember”.

Evan sits a lot these days. He wakes up and he sits. He plays sitting and he laughs sitting and he cries sitting. He goes to bed after sitting all day. He gets bruised just sitting. He looks pale even when he sits. He listens to music, sitting. He builds towns and theme parks, sitting. He tries to remember, sitting.

Evan needs new memories, after all this sitting is done. He needs to go and to see and do. Now that he is almost nine, he can remember. He needs to make many, many more memories, so that he can just forget all about all the sitting.

Jemina and her crooked neck never sat. They say she never lived in pain, living everyday with her crooked neck, high upon the hilltop. They say she brought delight to so many. She was a spokes’ woman for scoliosis and she made sick children very happy. She lived a full life it is said, high atop the caged and craggily shoreline.

But, Jemina was a Mom and her baby died, when he was just born. Her baby passed before she had a chance to make any memories with him. I am not so sure just how happy Jemina really was, living with her crooked neck, in a cage with the memories of her baby sick and then gone. She died peacefully I am told, with her caretakers around her, and for that I am glad.

I shall miss Jemina. She was a good giraffe. She made memories for me and so many. When Evan is better, we will make new memories. We shall take him to visit the place that Jemina called home. We will tell him all about her. We will surround the trip to Jemina’s home with lots and lots of new memories, so that if Evan is called upon to sit again, he can remember.

To Infinity and Beyond

Raindrops on roses and whiskers on kittens...and Evan the Warrior Bands and t-shirts...these are a few more of our favorite things and places and people..sporting  Evan the Warrior wrist bands.

Remember the bands? The Evan the Warrior bands? Bands supporting Evan have been spotted in some amazing places and on some terrifically awesome people. Last year's contest winners Marshall, Parker and Kayla won our contest for having EvanThe Warrior bands in dumpsters and on all the rides at Disneyland... and absolute hands down Grand Prize Winners, First Place, went to "the boys" at the one and only... Marshall Space Center ....

To infinity and beyond. That's how far we can go...wearing Evan The Warrior bands to support Evan.

  Submissions are coming in for 2008--crazy and wonderful places and people-all wearing Evan The Warrior bands. Look at all the places Evan has been taken, while he cannot go. Look at the clever ways people have found to use and display and wear their ETW bands:

 

We want to share a picture we received from the darling SPROUTS.

They are in...drumroll please...

J-A-P-A-N !

See if you can spot the Evan the Warrior band.

Evan the Warrior   PO Box 800883  Santa Clarita, CA 90083

To get your band, simply  email Evan at : evanthewarrior@sbcglobal.net or write to the address above. The bands are sold at a cost of $3.00, or 2 for $5.  We even know of one boy, fighting cancer, that can wear 80 bands on his arms and still have blood drawn! No kidding!

Raindrops On Roses

Make photo slide shows at www.OneTrueMedia.com

It's time. Christmas has come and gone. It’s time to begin again, and in earnest. There was not a moment between the opening of the gifts, before the leaving. Evan restarted Phase 4, way before he got to play and way before we had a chance to say thank you. I whisked him off to CHLA, dark and early on the day after Christmas. We've only just now had a moment to count our blessings and extend our thanks. He returns this first week of January to the Hospital… for more.

This past treatment began with infusions, two bags of blood, an LP and all the side effects in a 15 1/2 hour marathon CHLA visit. Then, home for more…a midnight delivery of the chemo he will now receive through his IV, by me, for the next few weeks.

His counts are set to fall, with a nadir at day 12. Then, a rapid rise, only to drop dangerously low again. Multiply this by 4. To top it off, for this Phase, Ryan and his “I’m fine Mom cold” has chased Evan and his lowered counts and me around the house all season. To date, we have thankfully avoided a meeting.

When it's time to give Evan his chemo, I would rather be scaling the walls of Alacratraz after a 7.5 earthquake in the cold darkness of the night, without a lifejacket, food or paddle. I gown and glove, with special thick rubber gloves and I flush and open his line and inject the drugs and then flush it all through his veins again. I am to avoid a spill at all costs.

When I finish the infusion into my son, I am to dispose of the syringe in a special toxic bin. It is interesting to me to note the procedures for the safe handling and disposal of this “poison“, especially as they are procedures designed to protect me from the very agent that is infused, by me, into my son’s veins. But, it’s time and we march on, resolute in our quest for the cure.

I got just what I asked for-for Christmas that is. What I asked for was a prayer of a cure for Leukemia and, if that wasn’t possible, then, a season to remember for all time. What I got was a son in full remission and the time to enjoy him. For that I am “what’s it all about Alfie”, like melting chocolate yummy, come read the webpage for the next month kind of thankful. With my son, and time, and his 2008 resolve to "get rid of this Leukemia", along with your continued support, the cure will come; I can just feel it.

I wish you and yours very large, heaping and heartfelt doses of health in the year 2008. It all stands and falls, on health. Take dear care of yourself and your loved ones… for, without you… without them- those whom you love well- well, you might just as well have nothing at all. It all comes down to health, doesn’t it, though?

My prayer, each and every single day, is for the parents who have lost, for the health of the many precious children who fight and for the community who surrounds and supports us.

Happy New Year!

It's Not Whether You Win...

Today is the Rose Bowl in sunny California. USC meets Illinois. I don't much care about who wins or looses today, at the Rose Bowl, because I already know.

"As soon as you walk in the doors at USC, Coach Carroll teaches you how to be a competitor. If you're a true competitor, you respect every opportunity you have to play football. If you love the game, then you should respect it enough to give it your full attention no matter where you're playing." (Rivers)

And while we're speaking of respect, isn't it the ultimate sign of respect that the USC program has accomplished, under Carroll,  a 10-2 record and a third straight trip to the Rose Bowl? That cannot somehow be considered a disappointment.  USC had already won in the eyes of many who play football.

"I like, frankly, that it's Pac-10-Big Ten. I think that's cool that that's the way it came off," USC coach Pete Carroll said. "We're fired up about it and we're going to have fun with it and have a great time in preparation. Nothing but good stuff. It's a good day." The USC Trojans are winners in the eyes of their Coach, every day, no matter who they play or where they play.

"(But) there are so many expectations for the game today because we've done so well that you lose track of what we've done," Ellis  has once said. "But looking back at it as a senior, I think that we have done some great things." They are winners, the Trojans, and yes, they have done some great things, especially for our family .

Defensive end Lawrence Jackson has another word for what this senior class has accomplished at USC:

"It's a blessing," Jackson said. Yes, a blessing... the USC Trojans... led by their Coach.

I couldn't agree more. The USC Trojans are already winners, in our house anyway.

I like the way they fight. I like the way they train. I like their Coach. I Iike the way he lives. I like it very much that he cares about the underdog and he reminds him to:

                          FIGHT ON, EVAN

I like it so much that I have already declared USC winners in the Rose Bowl today.

Thank you to Sergeant Slater and to the many other individuals who made this happen, over the Holiday season as USC was preparing... to win. We are grateful, indeed. KH