Journal Entry


Monday, July 12, 2004

They walk through life

Always a smile on their face

You stand back and watch

Wishing to take their place.

Each day is a struggle

A war within themselves

You try to do your part

And take it on yourself.

They demand so little

they need so much

The best you have to offer

Is a safe loving touch.

So you put out your hand

And gently brought it down

And smiles they come

From all over town.

So for the touch of your hands

Upon these kids

We'd all like to thank you.

signed: Just for Kids
Seneca County Ohio

HELLO CHRISTI FANS!!!!!

Things have been extremely busy and hectic and I can't think of a better thing! (That means we're not sitting around the hospital bed of a sick little girl, but are instead living life to the fullest each and every day and thanking the Lord above for our tremendous blessings!)

Shayla had an incredible day last Tuesday with our friends- Doug & Caroline, as they took her to the Toledo Zoo. The girls have also spent time recently with Grandma Nonee and Paw Paw Joe as well as Grandma Nee Nee while I've been faithfully attending class on Tuesdays and Thursdays down in Columbus. Aunt Marty also entertained them one morning and they LOVED being with the miniature horses. Aunt Marty felt bad that Christi fell off of one and was scraped and bruised pretty good on her arm and head but I could only think, "I've been waiting for a normal childhood accident. This is it!!" Seriously, we appreciate everyone's help with the girls. THANK YOU!

Last Thursday morning, I was a bit late to meet my carpool for my class at Ohio State. While a day earlier I had learned of horribly sad news, on Thursday morning, Paige's sweet Mommy asked me to share their horrendous news with our neuroblastoma support group. I was thankful to get to do "something" for such a sweet, sweet couple during this most difficult time. So with tears that wouldn't stop flowing, I wrote:

Dear NB Family,

It is with deepest sadness and tremendous ill feelings that I share with you our listserve friends from Michigan, lost their precious, cherished and only child to this evil beast, which has connected us all, yesterday morning. "Princess" Paige's Mother, Sandi, asked that I share this most devastating and absolutely horrible news with the list and to thank you for your support and help throughout Paige's very short battle with NB. (She was diagnosed with NB IV less than one year ago.

This disease has robbed us of another lovely child years and years too soon.) My heart bleeds for this most wonderful family left here on earth. Paige's (awesome) website is www.paigerutter.com I'm certain that her sweet parents (Andy & Sandi) would appreciate a post in her guest book or an email of condolence. Visitation will be in Flint Thursday and Friday with her service on Saturday.

May God be with you all!
With tears and love,
Angela Thomas
Mom to Christi, NB IV

We were never even able to meet "Princess Paige" (as I called her) in person but without a doubt there couldn't have been a more wanted and cherished little girl than Paige, forever three. Diagnosed less than one year ago, she captured my heart the moment I saw her picture on her site and I soon started communicating with her family - some from the Buckeye State!! Her website is in Christi's Clubhouse. Please keep, Paige and her family in your thoughts and prayers. I have more questions then answers! Why? why? WHY????!!!!! May God somehow comfort them with strength and peace.

When I returned home from Columbus Thursday afternoon, I zipped Christi to our wonderful hospital to get her mediport accessed from inside her chest. With Monday's counts being so close to being able to start her third round of ABT-751, CHOP overnighted her chemo to us since we were driving to Washington DC on Thursday after Shayne returned home from work. All we needed to see was an ANC of 1500 and platelets of 100. I was confident her counts on Thursday would be above those levels because Monday's were so very close with her platelets qualifying and her ANC just 400 points shy. Well, with cancer, I should know better! Her platelets were 100 (Yes, I think I'm hearing cheering here! Yeah! Thanks, Prayer Warriors!!) but her ANC was 1400 - not quite close enough. Therefore, we were advised to pack the oral chemo pills and to have her counts checked while we were in DC. They said they would fax the script (which never arrived).

We took off for Washington, which should have been about an 8 hour drive, but due to construction ended up being 10 hours with an arrival time of 3:00 AM. The girls slowly woke up and walked in the hotel room where they asked, "Is this a Ronald McDonald House?" And I could understand why they'd say that as so many of our NYC trips had us arriving in the middle of the night and it did feel like that as we walked into a dark room in a tired state of mind! Shayne and I quickly responded with laughter and said to each other - how nice NOT to be in a Ronald McDonald House!!! Thank you, Lord!!!

My teachers meetings were incredible! Never did I think things would get "back to normal" (well, sort of) and never did I think Christi would be back at the annual RA as well! God is good! As the first day's program was starting and I stood clapping for our leaders, surrounded by 9,000 others also committed to education, tears fell down my cheeks as I thought back to one year ago when we were in NYC and I wasn't with my teacher friends at the national convention after nearly 16 years of straight attendance. I wasn't really able to do any sightseeing due to meetings which started daily at 7:00 AM and ended at 6:00 PM for five days straight, but the girls had a lot of fun with their great Daddy! (Smithsonians, Capital tour, National Zoo and of course "Panda mania" - walking all over looking for the wild painted statues of pandas throughout the city!) A sweet "Christi Fan" from the DC area came all the way to our hotel one night to meet Christi in person. (Thanks, Karel!!!!) I was able to go with my family to the fire works on the fourth of July. While I tried my best to talk Shayne out of this as we've been in DC twice before on the 4th and the crowds have been HUGE, I also realized that this may very well be our last time to watch fireworks with Christi and of course no place could be better than our nation's capital on the 4th of July so I agreed and I'm thrilled I did. Our hotel was just a few blocks away from the Mall and the crowd wasn't what we had remembered from the past. During the fireworks a group of teenagers broke out into "God Bless America" and it renewed my spirit and hope and gave me chills.

The President of the 2.7 million NEA, along with the awesome NEA Secretary / Treasurer Lily Eskelsen, asked Christi and I to address the members of the NEA Board of Directors if we wanted to do so. Of course I did! (Lily came to Northwestern Ohio last September and shared our family's story with the board when she returned to DC. They in turn pass an envelope and took up a collection for the Christi Can to help with medical bills so I wanted to say thanks to my association family and to let them see for themselves how very very well Christi is doing right now!) The night before our family ran (literally - you know our active girls!) into the NEA President so Christi was joking around with Reg outside of our Ohio meeting room. (I actually think she took his cane and started dancing with it, but.........I just kept thinking, "She has no clue as to who she's joking around with now! Only Christi!") So we were introduced at the meeting and as we walked up to the stairs for the stage, there was Reg waiting to greet Christi. This VERY large, very sweet and very compassionate and moving black man picked Christi up, lifted her up, sat her in his chair in front of the podium, adjusted the microphone in front of her lips and put a big kiss on the top of her head while the sweet Board clapped and clapped for her. It was the sweetest thing! Then, he took my camera went out front and started taking pictures while I delivered our thank you speech. I couldn't believe I wasn't even nervous that there were about 200+ highly educated folks sitting in front of us, but I just felt like I was giving a family update to dear friends- even though you could have heard a pin drop (and THAT'S not my family! hee hee). And I knew not to even look down at our seven teacher representatives from Ohio sitting in the very front as they know too much about Christi's prognosis and I didn't want to get emotional by glancing at them. It went great and I'm thankful to have had the opportunity to let them know how much we appreciate their love and support. It's been this love from friends, family and strangers alike that has gotten us this far and that gives us continued hope. We've been so very blessed! Thank you!

Shayne set out to get Christi's counts checked in DC which ended up being quite an ordeal. (Next time, I'll be certain to take my insurance card as well as the doctors orders and a better city map. smile.) We'd like to thank our incredible NB Listserv family for so rapidly responding to our desperate plea of: "If we can't go here then, where can we go for good care?" Soon we were led to what turned out to be a great experience: Georgetown's Children's Hospital. (Yes, listserv friends - the van was waiting for Shayne at THAT hospital just like you said it would be at Georgetown!! No theft! No problems!) Shayne said that Christi felt completely at home - walking into a new hospital playroom, introducing herself and inquiring if they had anything fun to do. Shayne said the Child Life Specialist was fantastic and they actually had a kiln and pottery for the children to partake in too. Shayne said Christi didn't want to leave that incredible Children's Hospital in Georgetown. Well, she did. And late that night we learned her blood counts. (I was actually pulling her medication out of the bag and humming, knowing she'd soon be swallowing pills when I heard Shayne ask in a very surprised voice, "1260???" so without saying a word, I stopped humming and I put the medicine bottles right back into the bag. Her ANC had fallen - not what we were expecting at all. Darn.) I will have her counts checked this afternoon here in Tiffin!

What a surprise to arrive home from Washington DC (again in the wee hours of the morning) and to learn that additional monies were waiting for Christi & Alex's Lemonade stand for pediatric cancer research!!!! God's people are tremendous!! That new money, along with what we already mailed to Alex's Lemonade Fund, now totaled over $3,000. When the new checks were added in it was $3,522.77 to be exact! Wow! You should have seen Christi's face when we sat counting and adding and she realized the amount hit an amazing $3,000. So cute!! (Thank you!) God's angels on earth have richly blessed so many cancer fighters and future cancer fighters with hope of a cure one day. And in case you're curious, Alex's Fund, just since June 2004 - not counting the $200,000 prior to this year, has collected just over $600,000!! That gives us hope! Goooooo, Alex Scott! We're shaking our pom poms, saying lots of prayers and toasting you with our Country Time Lemonade glasses in hopes that your $1 million dollar goal will soon be met! Thank you, Alex. Thank you Angels on earth!!! Have a GREAT week!!

Love,
Angela

Shayla's "funny": Christi still wants to grow up and be a teacher. Shayla said recently, "I want to be one of those church people when I get big." (pause) "They only work one day a week, right?" (God, please bless Shayla! And thanks for this little girl who keeps us laughing DAILY!) Shayne and I make it a point to never have the TV news on when the girls are around. (I remember as a very young child during the Vietnam War seeing some disturbing images on the news which really frightened me.) Well, Shayne sat down and turned on the news and then Shayla walked into the room. Shayla asked Shayne, "Is there a war going on?" He reassured her that the war was very far away and that she was safe. Then she proceeded to ask, "Why are they fighting? Why don't they settle it another way - like "Rock, Paper, Scissors"? (Very profound, Shayla!! I think we'll run this gal for President!!)

Angela's "funny": I've been taking my summer classes with two awesome Professors from Heidelberg College. I really appreciate carpooling since I invest four hours in each round-trip. The conversation helps pass the time, not to mention the savings of gas and parking charges. We've also been working on our group projects together. Anyway, last Thursday morning as we walked from the parking garage to our class, a TV news camera outfit was set up interviewing other students. As we approached, the news anchor said, "What are your thoughts about OSU's new basketball coach?" We of course didn't even know there was a new basketball coach!!

What's Next? Blood counts to be checked (again) today. If her platelets are at least 70 and her ANC is 1500 or higher, she'll start her oral chemo pills which will be taken for 21 days straight. (This will be her third cycle of ABT - 751.) After finishing this round, she and I will fly to CHOP - most likely the first part of August, to test/scan and evaluate her disease status. We continue to hope and pray that this new "miracle drug" will be the answer to our prayers of getting her NED (no evidence of disease) for the first time in nearly two years of fighting this evil beast. So we're hopeful that she'll have the counts today to start and I hope that our next "problem" will just be scheduling her many tests and trying to obtain flights not the panic of being off of treatment any longer! Today makes 19 days since her last treatment ended. (Between cycle #1 and #2 she was off of treatment for 22 days. We're anxious to get back to trying to forever extinguish this simmering fire before she's fully engulfed.

There will be a Blood Drive held in Christi's Honor on Saturday, August 7th at Community Hospice Care (181 East Perry Street) in Tiffin. The Thomas Team will be on hand to lend support to loving donors. Call Community Hospice Care at 419-447-4040 or 1-800-834-8100 for an appointment. Give the precious gift of life.

The 2nd annual "Friends of Christi Thomas Poker Run" will be held on Saturday, July 31st beginning at Smitty's Avenue Tavern. Christi is the brave 7 year old from Tiffin who has captured the hearts of many with her boundless energy and beautiful smile - despite continually fighting a rare form of cancer for nearly two years. At the Thomas Team's request, all proceeds from the Poker Run will be donated to Just for Kids - a great organization who helps families from Tiffin and Seneca County.

Just for Kids is a nonprofit organization started in memory of Keith Clouse & Joshua Brickner - brave cancer fighting children from this area who earned their angel wings years and years too soon. This organization is a United Way associate agency and is available to help and support families going through a time of crisis. They understand the burdens of a catastrophic illness and know that families of children with life-threatening diseases have extra expenses involved in order to get medical treatment for their children.

Motorcycles will leave Smitty's Tavern at noon. In addition to the Poker Run, there will be a hog roast dinner, door prizes and a band - Back Roads. Cost to participate in the Poker Run is $10.00 per person - which includes your meal. For those just coming to eat, dinners will be $6.50 and will be served from 4:30 to 7:30 at Smitty's. Carry out dinners will also be available. The Thomas Team will be on hand and Christi's scheduled to go for her very first little motorcycle ride. We urge all to come out for a good time and a good cause - Just for Kids! For more information email: lmartin@heidelberg.edu, call Smitty's Tavern at 295 Vine Street or call Keith at 419-447-9911.

In Memory of the Princess: Paige Rutter, Forever Three (June 21, 2001 - June 30, 2004):

"Girl never let illness get her down "

Paige Rutter, 3

THE FLINT JOURNAL FIRST EDITION

Friday, July 02, 2004

By Chelsea Samuel

FLUSHING - When Paige Rutter wasn't feeling well, there always was one thing that made her feel better. "Sing 'Sunshine,' Mommy," she'd say to her mother, and the two of them would sing "You are my sunshine."

Paige, 3, died Wednesday at home after a year-long battle with neuroblastoma, a type of childhood cancer.

Paige's mother, Sandi Rutter, said Paige didn't ever realize she was different from other kids. She would lift up her shirt to show off her broviac catheter, used to administer medication, and was confused when other kids didn't have one.

"She didn't know anything different," Rutter said.

Rutter said Paige always was a normal 2-year old, despite the cancer and treatments she endured. She loved playing with her yellow lab, Levi, and watching Disney movies. The family even went to Walt Disney World in January, courtesy of Grant-A-Wish of Genesee County. "It was a trip of a lifetime," said Rutter. "It gave us a chance to be a family: no chemo, no hospital, no owies."

When Paige had to stay at the hospital, her mother said she lived in the playroom in Hurley Medical Center's pediatric ward. She even knew where the key was at the nurse's station.

"(Treatments) really didn't knock her down," Rutter said. The nurses at Hurley nicknamed her "Princess Paige" because of her spunky determination.

Paige was diagnosed with neuroblastoma on July 12, 2003, after her parents grew concerned about a bump on her forehead. She went through chemotherapy and radiation treatments at Hurley Medical Center, where her parents worked.

"We were put in different shoes that we weren't used to," said Rutter, who works as a nurse in the trauma intensive care unit. Andy Rutter, Paige's father, works as a physician assistant for trauma services.

Since Paige loved the playroom so much, her parents set up the Paige Rutter Memorial Pediatric Playroom Renovation Project to help raise money for the playroom, which Rutter hopes will be known as "Paige's Playroom" some day in the future. "The playroom is in real need," Rutter said.

Contributions can be made online at www.paigerutter.com through Children's Miracle Network. Paige's parents created the Web site to communicate with Paige's family and act as a resource for parents of other children with neuroblastoma.

Services will be 1 p.m. Saturday at Swartz Funeral Home, 1225 West Hill Road in Grand Blanc Township. Visitation will be today from 11 a.m. to 8 p.m. at the funeral home.

Paige leaves father and mother Andy and Sandi Rutter of Flushing; grandparents Geneva Swink of Linden and Jack and Mina Rutter of Greensburg, Penn.

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