Evan The Warrior

Labors of Love

Mom's Musings For September

September welcomes CHILDHOOD CANCER AWARENESS MONTH. Please tune in next week September 5 at 8pm to ABC, CBS, or NBC for unprecedented coverage of an event, STAND UP TO CANCER. Many of our fellow Carepage Moms and Dads have spent countless hours with the networks, pushing for childhood cancer coverage and, while it is unfortunate that we know so many to be featured, it is nevertheless, important to raise awareness.

In honor of Childhood Cancer Awareness month, CureSearch is challenging each of us to “walk virtually” and show our support for children with cancer. A staggering fact - each year 12,500 children and their families hear the frightening words “your child has cancer”.  Join us throughout the month of September for a virtual walk in support of children with cancer and their families.

Information about Childhood Cancer:
Did you know....
12,500 children are diagnosed with cancer each year…34 a day.
Of those diagnosed, 1 in 5 will not survive
Together we can reach the day when every child with cancer is guaranteed a cure.

Learn more about childhood cancer and the CureSearch mission at http://www.curesearch.org/ . CureSearch is at the forefront of our quest for cancer awareness as September beckons. Please consider a Virtual Walk for 12,500. This is an increduble opportunity to raise awareness.

NASCAR is next. For the month of September, they are holding a BLOOD AND MARROW DRIVE at race tracks across the country. The drive is FREE. Please strongly consider registering and, hopefully, one day, saving a life. Normally, the cheek swab to register and the testing is $52. This month, it is free and offers up the incredible opportunity to give new life to the countless children and adults needing new marrow to fight blood cancer. Painless and free…what could be better?

Thanks this month to RAMPAGE Futbol Club RAMPAGE AGAINST LEUKEMIA. The girls are waging an amazing campaign, on and off the field. A hearty Shout Out as well to the East Side Team in Training, who has already raised $25K for research in their early season efforts. Evan is excited to be their Honored Teammate. Also, applause to AQMS Moving and Storage Company for their generous offer to assist in recycling efforts for Evan again this school year.  Anyone considering movers or with a need for storage, should give them a call.

Links to all of these amazing "teams" are on…yep…this webpage! How convenient is that? Scroll down and enjoy the pictures and details, updated weekly.

Medically, Evan faces a big Clinic next week. He is scheduled for a Lumbar Puncture and will attempt, once again, to do it without sedation. Kudos to him for being so brave. Knock on wood for clear spinal fluid and no, no, not ever, please, please, please… no relapse. He will also receive his first IV (no PICC) chemo and lots of pokes. Fingers crossed for steady, talented nursing access. A pulse of steroids begins at that time too, which is always ‘trying’ on his emotions and appetite. Prayers that his limping will subside and his glucose levels will remain stable this month. Thanks, as always for keeping the little big man in your thoughts and for checking in and for your support. I will update after the results are in. 

Last, but not least: If you heard the 15 minute primal scream last week, it was ME, happy not to have to baggie my son’s arm, after 15 long, awkward months of half baths! Evan “left it in the water” Phelps style, and had the long awaited soak and swim in a warm, steamy shower, and actually, the primal scream of sheer joy was HIS!

Until next time, knock on wood, and thanks for your amazing and constant support. xoxo mom

 

THIS IS NO RERUN!

TUNE IN SEPTEMBER 5, 2008 8PM et/pt Jennifer Aniston, Scarlett Johansson and Charlize Theron are among the A-listers who signed on for the Stand Up To Cancer Telethon  NEXT WEEK SEPTEMBER 5, 2008. American Idol David Cook, Christina Applegate, Meryl Streep and Sally Field also will appear on the Sept. 5 broadcast, which will be simultaneously aired on ABC, CBS and NBC to raise money for cancer research and treatment. Dozens of other celebrities and sports figures will also be appearing on the program, according to Stand Up To Cancer. More info on the broadcast: On Friday evening, September 5, 2008, the networks will donate one hour of primetime for a history-making interactive television special, uniting the nation. SEPTEMBER 5, 2008 Stand Up To Cancer Over 50 of the biggest names in TV, film, sports and music will participate in the live phone bank, answering calls from viewers who want to donate. Segments on cutting-edge research -- likely to be reported by network news anchors Katie Couric, Charles Gibson, and Brian Williams -- will include intimate dialogue with the renowned scientists who are making the big, potentially life-saving discoveries. Celebrity performances and participation in special live and filmed pieces designed to educate, inspire and entertain. + Tune in September 5th, 2008 at 8:00 pm, ABC, CBS, NBC

Hi Team!

Bet ya can't guess who these great people are and...wanna know what they do... for fun? These are the selfless, svelte, swimmingly strong members of the EAST SIDE TEAM IN TRAINING. These stunning, stupendous, smiling TEAM members raise buckets of money for the Leukemia and Lymphoma Society. They run, walk, swim and bike for the cure and they do it all with incredible spirit and love and no small measure of endurance...for Evan and all those like him. Thanks, TEAM! We couldn't do it without YOU! Luv, Evan

www.eastsidetnt/team.com

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH

SUTC

Stand Up To Cancer

Stand up to cancer is an unprecedented collaboration for CBS, NBC, and ABC to simultaneously broadcast a cancer fundraiser September 5.

Stephanie Stahl

PHILADELPHIA (CBS 3) ― Stand Up To Cancer is a unique joint mission involving the three television networks. They'll come together for a big fundraiser to raise awareness and money for cancer research.

CBS Evening News Anchor Katie Couric and actress Abigail Breslin met with cancer patients at The Children's Hospital of Philadelphia Tuesday for a story that will air during the Stand Up To Cancer special.

"Together we can move research forward and start coming up with better treatments and possibly one day even a cure," said Couric.

Breslin, the 12 year old star of "Little Miss Sunshine," lost her grandfather to lung cancer, and will be in a movie called "My Sisters Keeper" with Cameron Diaz about a family struggling with cancer.

"We're trying to get people to come together to support cancer research and help scientist get new treatments," said Breslin.

Stand up to cancer is an unprecedented collaboration for CBS, NBC, and ABC to simultaneously broadcast a cancer fundraiser September 5.

Pearce Quesenberry, 10, has been invited to appear on the special show with Breslin. She has a deadly kind of brain cancer.

"People think oh you have cancer it's really bad, but it's really bad. Like all the stuff you have to go through yeah. It's a lot," said Pearce.

She is getting experimental treatment. It's the kind of cutting edge research that Stand Up to Cancer may help pay for.

"Without funding you can't do experiments. Without funding you can't make discoveries. Without discoveries you can't deliver new cures to patients," said Dr. Tom Curran, Cancer Researcher at The Children's Hospital of Philadelphia.

The Stand Up To Cancer special will feature all sorts of celebrities, but you don't have to wait until September to get involved or help support the effort.


RELATED LINK:

Stand Up To Cancer

RAMPAGE AGAINST LEUKEMIA:Preseason Classic

                                                                                                                                           Congratulations to RAMPAGE for a Preseason Classic performance on and off the field this weekend! Thanks for your amazing support! We luv you! To support our incredible RAMPAGE team and their winning  spirit and scores, check them out, follow their progress, or better yet, come to their games...tell 'em Evan sent you! Season information can be found at www.rampagefc.com. Our incredible team can be found under Rampage FC GU13 Blue. RAMPAGE !

 

Life: It's in YOU!

Join the Bone Marrow Donor Registry and give hope to patients everywhere.

When you become a bone marrow donor, you join the global movement of more than 11 million donors who stand ready to give someone a future.

You could be the one person a patient, like Evan, needs. Every day, 6000 patients search the registry for a donor.

This fall, you have a chance to make a difference. Free!

GOT MARROW?

2008 NASCAR Foundation Blood and Marrow Drive

At race tracks- nationwide!

This fall join with thousands of other race fans to help save lives. Be part of the annual NASCAR Foundation^® Blood and Marrow Drive — give blood and join the NMDP Registry as a bone marrow donor.

Race tracks nationwide have teamed up with the Hendrick Marrow Program and National Marrow Donor Program (NMDP), The NASCAR Foundation and the Jimmie Johnson Foundation

(www.jimmiejohnsonfoundation.org) to save lives.

Life. It's in you.

Join the donor Registry and give hope to patients everywhere. To help you save a life, the Nationwide Foundation and the Hendrick Marrow Program are covering costs for volunteers who join at a participating track or online during a special campaign September 7 - 22, 2008.

Join at a race track near you. Click link below for race tracks near you.

Visit The NASCAR Foundation to find participating tracks: http://foundation.nascar.com/NetCommunity/Page.aspx?&pid=201&srcid=183

Can't make it to a track? Join the NMDP Registry for free!

September 7 - 22

• Join online now.

• Registering as a bone marrow donor

  Understand your commitment before becoming a bone marrow donor. Learn more about joining the NMDP Registry:
  
  
  • FAQs about Joining the Registry
  • Medical Guidelines for Joining

Join the Donor Registry.

Life.

It's in you.

CAN I HAVE KETCHUP WITH THAT?

Surgery is complete. Evan is recovering. I got to watch Evan get put to sleep, which was a first for me. I also got to feel the fear that comes from being told the surgery will be over in 20 minutes and, an hour later, still not hear anything. (Details available upon request.)

Yes, Parker, we now have his line, and a few other, uh, shall we say, ‘attachments’. Right now Evan doesn’t feel so hot and he doesn’t even want to think about today. I don’t blame him.

The surgeon told him, in a morphine stupor- so he may not even remember- that while he didn’t get the “gold”, he set a “house record” for level of difficulty.

When Evan starts feeling better, I have some good news for him. He gets to put ketchup… on his ketchup. Sugars are normal today. Thanks for all the prayers. xoxo mom

GO TEAM USA

I Can't Sugarcoat This

Evan put on his Nike "Fearless Warrior" sneakers yesterday and allowed the expert PICC/IV surgical team to attempt one more removal of his line, without anesthesia.

It didn't work.

All week long, there were road blocks to the resolution of his line problems...insurance, OR schedules, radiology conflicts, procedure re-codes, case managers with the day off, shift changes, preop exams, new labs, those who wished to give it the ole college try, etc....There was the slightest chance that his line could have migrated down, by itself, during this interminable wait, so Evan agreed, under stringent conditions, to a retry, before a dressing change and a weekend wait.

The good news is that Evan is not going to be subjected to a retry. The better news is that he is the first surgical case, Monday morning.

Maybe.

Labs revealed a new problem. His glucose levels (blood sugar) have risen from a normal of 76 on Monday to a level of 376 on Friday. That's an impressive jump. Steroids have been discontinued. He is being watched.

His clotting factors, not insignificant, given the nature of the impending procedure, are not in line with normal parameters either. I am going to attempt to mentally prepare my son for the procedure, but I think it prudent to cloak my words with prepositional phrases. I am running out of platitudes and I can't sugar coat my words right now. Evan has been instructed to avoid any and all sugar- for the weekend.

Conjecture is that "stress" might be a factor for these blood levels. I'll go with that. More next week. Enjoy these last few days of summer. Please keep Evan in your thoughts. xoxo mom

MIRACLE TREAT DAY

On August 7th, 2008, Dairy Queen^® and Blizzard^® treat lovers across North America will make miracles happen for sick and injured kids in their communities. Proceeds from Blizzard treats purchased at participating DQ stores are donated to local Children's Miracle Network hospitals. Thank you for helping to make miracles happen, one Blizzard treat at a time.

The DQ & Children's Miracle Network Story

No question about it, kids love Dairy Queen and DQ loves kids. That's why, since 1984, Children's Miracle Network has been our charity of choice. In that time we've raised over $70 million for Children's Miracle Network hospitals, touching the lives of millions of sick and injured kids across North America. All funds raised by DQ store locations stay in the local community and benefit children treated at your Children's Miracle Network hospital.

About Children's Miracle Network

Children's Miracle Network is a non-profit organization dedicated to saving and improving the lives of children by raising funds for children's hospitals across North America. Each year the 170 Children's Miracle Network hospitals provide the finest medical care, life-saving research, and preventative education to help millions of kids overcome diseases and injuries of every kind.

For more information, visit www.childrensmiraclenetwork.org.

In Canada, visit www.childrensmiraclenetwork.ca.