TGIF and many other thanks

Visiting Cousin Ashley at her yummy workplace.
Shelby liked the horse craft Christi made for her while she was busy at Bible School and Christi waited back with Aunt Tina each morning.

Thank God It's Friday! And thanks to all of the hard workers at Baumann Auto Group for searching high and low and for working so hard; my transportation problems are solved! (Mom, this vehicle will be much more reliable for me; I hope you'll worry a lot less now!) Did you know the insurance company will send someone to your workplace to install a new front windshield? (another "Thanks!")

As you can see from the pics, we had a great night at my sister's! Thanks to Gil for watching all the cousins. (My awesome sister and I headed out for a salad and live music and to talk about our children last night, very fun!)

The girls and I took off at 6:15 this morning so that I could make it to my class on time. After waiting for 35 minutes for a new babysitter who showed up an hour later I only had one choice so that I wouldn't be late for class. I had to take the girls with me (yikes). Thankfully, Christi read the entire time and thankfully Aunt Tina sent some toys home with the girls and I grabbed them as we hustled into class. They provided Shayla with entertainment (and thankfully silence) for the 1 1/2 hour class. I was sweating it BIG TIME, but my I'm thankful Professor didn't seem to mind. (This was his very first encounter with Christi and perhaps her bald little head caught him by surprise.)

Next, we drove the rest of the long drive home and went to Dr. Vela's office. Thankfully, the exam was fine and the blood draw uneventful. While not pleased with the results, I know they could be MUCH worse so I am thankful for that too!

BLOOD COUNTS:
8.3 hgb. (Yikes! That's getting very close to needing a blood transfusion.)
58 platelets (up ten from last week - hey, it's a baby step better and it's our biggest prayer request right now.)

They were unable to get an accurate white count, but I think we're fine in that department right now. While waiting for her appointment, I noted that she "only" needed four live saving transfusions this month and she was "only" hospitalized six nights the entire month of June! I'm incredibly thankful about that good news! Sadly, many of our warrior friends are not doing very well right now.

Next we went to the library as the girls are passionate about getting there every week and finally we went to Cindy's where Christi's "Locks for Love" wig was styled. Cindy had never seen a nicer wig and it looks great now. Christi wore it for about 2 hours today. While running errands she'd whispered to me a few times, "I don't think that lady even knows it's a wig!" It does look very realistic and we are very thankful she received it, even if I doubt she'll wear it very much. Girls should have options! (smile) And quite frankly who needs hair when you're as good looking as Christi??!! (hee hee)
PRAYER REQUEST: We pray that Christi continues to feel well and that her blood counts soon rise. THANK YOU Partners in Prayer! Hug your loved ones and tell them you love them often!! Here's wishing you and yours a great weekend!

Wanted!

HUMOR FROM HARRIET:
Officials in rural Seneca County have reported seeing a sneaky truck idling through the countryside. But this is no ordinary truck. The windshield of this vehicle of carnage sports a hole mysteriously bearing the resemblance of an unfortunate buzzard named Mabel Feather. The scavenger community is outraged.

"We were minding our own business," said an eyewitness, "in the middle of the second course of possum au gratin, when out of nowhere, from the top of the hill, comes this huge, evil, vehicle of death tearing down the middle of the road! We tried to get out of the way, but nobody can move that fast."

The group of young birds where about the marriage of the victim's son, when their wedding feast was tragically cut short by vehicular birdslaughter, the likes of which this quiet community has never witnessed.

"I knew Mabel like she was my own sister." Says Hal Buzz, Feather's neighbor. "In fact, there were so many of us in the nest that she may very well be my sister."

Prosecutors for the Humane Society are prepared to send this horrible villain to jail for as long as it takes. "Justice must be served." Said Assistant District Attorney Al B. Tross. "This is a fowl crime which must not go unpunished!"

The citizens of this sleepy little town are in shock today. I'm not sure if this warm, loving community will ever be the same. Many have gone bald from all the emotional and psychological stress. "This is no fiction," says Hank the Cow-Dog, who heard about this atrocious crime while sleeping on his gunny sack bed under the gas tank out at the ranch.

If you have any information about the wherabouts of the firey-haired villainous pilot of the truck of death, please come forward. Only you can stop Buzzard Slaughter.

Potential Villian?

Buzzards & Broken Things

CHRISTI & KAYLA
Photo by Aunt Marty, taken June 19, 2006







It was a lovely afternoon. I knew Shayla was happy at a friend's home, Christi's having the time of her life at my sister's and I was driving home from campus. What could possibly go wrong?

I drove down the hill- in Shayne's truck, and I saw them. Buzzards! Feasting upon, what else? Roadkill, gross! (See; we do live in the middle of no man's land!) I let off the gas assuming the big birdies would up and fly off and then it hit me- NO! They're going to hit me! Sure enough, one of them did. CRASH! Right into Shayne's windshield smashing it (not good- and I won't mention what happened to the poor buzzard).

Since I've been home, I've been trying to get it fixed. Shayne handled it all like a trooper; however, I didn't mention the fact I still don't have a vehicle of my own and I have to be back in Cinci. again tomorrow. Our sweet neighbor, who happens to sell cars for Buck Baumann Pontiac-Buick-GMC, is hard at work searching for a vehicle for me. (THANK YOU, DAVE!!!) He found my "old" van for me nine years ago and it was fabulous! Hopefully, he'll find something that will last me a very long time again. Last night I went up to the repair shop to get our belongings out of the van. I actually found it very sad; however, since it needs about $1,500 to try to fix it and we put that much into it not that long ago, it doesn't seem like the best decision right now so I sadly said, "goodbye and thank you".

Christi's situation puts everything in perspective so these "car problems" are only minor little situations that will soon work themselves out. Meanwhile, we pray for Christi's "situation" to improve somehow. I'm anxious to get back to my sister's to check on her for myself tomorrow and to learn what her blood counts will be come Friday afternoon.

P.S. Christi roared with laughter as she shouted back at me into the phone, "You hit a buzzard?! That's exactly what just happened in my Hank book:- "The Case of the Wounded Buzzard" (in book #14). At least she can see the humor in it all! What a blessing she is!

Angel Lexie

Over the past (almost) four years of writing, I've tried not to say that things are unfair as I know life is not fair and MANY have it much worse than we do; however, learning of Lexie's death at the tender age of six leaves me with no other words. This disease is so unfair! May God bless and comfort Lexie's family, especially her six year old twin sister. Condolences can be posted at: http://www.caringbridge.org/me/lexie/

Catching Up

After 9 years and nearly 165,000 miles, my van caught up with me and decided to stop working over the weekend (not good). With three trips to class and two trips to Cinci. this week alone, Shayne (the sweetheart) said, "Drop me off at work and take my truck," so at 6:30 AM Monday - we did! (And we had a lot of fun at Daddy's expense joking about how he was going to get home from work while we would be four hours away!!)

Christi had a great weekend: swimming at her Grandma's condo at the lake, going to Jennifer's graduation party and of course riding "The Raptor" at Cedar Point. (That was the best roller coaster I've ever been on," she happily declared. (The Raptor goes 57 miles per hour; it's not a kiddy ride. This gal continues to amaze me!)

Jennifer's graduation party.
Swimming at Grandma's- AGAIN!


Monday found the girls with Aunt Marty while I was in class and then being incredibly great sports as we ventured all the way down to Cinci where we overnighted last night. Christi is now having her "Cousin's Camp" and told me, "This is what I've waited my entire life for!!" I know she and Shelby (and Ashley and Will) will have a grand time until Shayla & I return to pick them up.

So that Shayla wouldn't feel bad about not getting to stay, I wanted to do something special with just Shayla; therefore, we stopped at COSI on our way home (and to break up the long drive home) and put our COSI Pass to work. HUGE PLUS: We were able to meet up with Traci (Harriet) and Jenn (Elizabeth) for additional fun!

Stars Wars Science Exhibit at COSI
Planting at COSI
Ahhh, Rats!











I returned home late this afternoon to learn of bad news: Benny earned his Angel wings and the official scan reports of Christi's MIBG do not say subtle decrease as Dr. Maris and I saw and discussed, but no change. "Active disease remains the same as May 3rd with neuroblastoma in her: skull, left upper chest, right upper quadrant, legs, and pelvis." We know we are living on borrowed time, and we don't like it one bit. Blood counts will be checked again on Friday afternoon.

Now let's see what Shayne has to say about my van. Hopefully, it can be fixed! I'll catch you up later. Have a great week!

A Tribute to Benny

Benny Petz started his eternal life early this morning. My heart is breaking to come home and learn of this horrible news. While I never met Benny because his family lives in Arizona, his sweet mom- Amy is an Internet friend. The beautiful photos show Benny, just ten days ago, holding his brand new sibling. My heart breaks for Amy, as she said, ushering one child into this world and another out. May God grant this very special family strength and comfort. Benny's website is: http://www.caringbridge.org/az/bennylove/

The Happy Camper

Shayla and a school friend at Girl Scout camp.
We made it all night!!









I half expected to get a phone call in the middle of night and to have Shayne drive off to pick up Christi, but nothing could have been more removed from the truth. She had a blast. A Girl Scout leader told me that many of the kids went home in the middle of the night, but Christi wasn't scared at all and really enjoyed everything. She had a very good time and learned about archery and had fun with the rubber duck race and eating S'mores and making pizza pies over the fire. Her only complaint was, "It's hard to fall asleep without reading a book." I know she was only gone one night, but we're glad to have her back!

We went directly from camp to the hospital where her blood counts were checked. Unfortunately, there's been no increase in the platelet count, but the hgb. is up.

PRAYING FOR PLATELETS:
47 platelets (very low, need to be 75 to qualify for Fenritnide)
10.2 hgb.
3.3 white

She thought it was great that FINALLY her Locks for Love wig arrived after six months of phone calls, paper work, etc. When she put it on her head, it fit and she loved it - it made the wait worth it. I really don't know how much she's going to wear it, but she really likes it and it feels fabulous and the color is perfect! On Friday, we'll take it to our beautician to cut the style. (Picture: Christi admires her wig in the mirror.)

Christi again reminded me that she has no height restrictions at Cedar Point when they measured her this week at CHOP; therefore, she wants me to take her on the Raptor because she was too short last year and it's one of my favorite rides. It only goes upside down six times so......I think we'll be putting our Cedar Point Season Passes to work again today and heading up to Lake Erie to visit Shayne's mom. Here's wishing you and yours a great weekend!! TAKE CARE!

Reflecting on Philly

“It’s not even 11 o’clock yet; you’ll make that flight.” Those were Liz Scott’s famous last words as she so kindly dropped us off at the airport yesterday. I knew we were early, but we either had to wait at the hospital or at the airport and the airport seemed one step closer to home in my mind so we went there. With three (THREE, yes 3) earlier flights scheduled to take off prior to ours, I assumed that we’d get on one of them. What I didn’t imagine was that all three (THREE, yes 3) would be cancelled due to poor weather. With over five hours to wait, I asked Christi what she wanted to do. Eating was her top priority so we did! Then we found the perfect little corner, complete with an electrical outlet so that we could plug in my battery less computer. Christi played hours worth of computer games, read and did American Girl puzzle books while I finished all of my reading for my classes and enjoyed her company immensely. She is so delightful!

Our plane was a bit late arriving in Detroit where we were scheduled to make a connection. While hustling to the gate Christi said, “Mom, your phone is ringing.” I said, “Christi, I don’t have time to get us some food, use the restroom and make our flight. I’ll get to it later.” Well, arriving at our gate and learning that the airport was not officially closed, but no flights were allowed to land or depart because of yet another horrible summer storm, I checked my phone and it was my mom saying, “We’re at the Detroit airport just about ready to get on our plane.” What???? Most likely Christi and I rushed right past her as they were at gate 7 getting ready to go visit Joe’s brother and we arrived just across the hall. Neither one of us knew the other was even to be at the Detroit airport last night!! Of course after our hustle we were now at gate 71 and trying to decide if we should go back and visit with them or if we’d miss our connection if we did. I got Christi her dinner and then when she finished I decided, “Why not?!! This opportunity will never present itself again and if I miss my flight I’ll take their car keys and drive home; it’s only two hours!” Christi was thrilled! Since it had just been the two of us for hours on end she was thrilled Grandma Nonee had a deck of cards on her and they sat on the floor and played cards. I’m glad we did because not too long after that we were all buckled up in our seats on the airplane where we just sat for two hours before we could actually take off. I kept thinking our plane had to be the very last one to take off last night; yet, when mom called today I learned that they sat there an hour longer than we did. Yikes! I’m grateful we’re all safely at our destinations now and so thankful Aunt Marty was able to keep Shayla an additional night. (Still Shayla didn’t want to leave today; the little Princess had so much fun in her five days with the Kings!)

Yesterday morning started off with quite a scare. The wonderful Tim was waiting outside the Ronald House gates for us and he delivered us to the hospital. Once inside I sat Christi down with her bag of Cheerios for breakfast and when I went to get her the bottle of water I just bought at the Ronald House I realized I didn’t have my bag. It "only" contained my driver’s license (important for trying to board an airplane in a matter of hours), all of my money, and my car keys to allow us to drive two hours home from Columbus, not to mention the Philly Tasty Cakes Tim had just given us and which came in quite handy while we were buckled on that plane last night!!. Christi said she was 80% certain she left it in Mr. Grant’s van since she was carrying it and of course his phone number was in my cell phone – in my purse! I registered Christi and told the lady asking for my insurance card, “Really, I do have insurance. I promise. I just lost my purse.” She asked if I wanted to call someone and I didn’t know Tim’s number. I left Christi and ran to a computer where I posted a desperate plea to Tim- thankfully a faithful blog follower who brought my purse right back to the hospital without even making me feel like a total idiot! He is amazing! What a sweetheart!

As soon as the scan was over we hopped into the elevator to head up to Dr. Maris and who was in the elevator but the great doctor, Dr. Maris! He chattened then told us he’d see us in a little bit. An hour and a half later, he came to get us smiling and saying, “What did you do to your eye, Christi?” (as it was still black and blue yesterday from Sunday’s crash into Aunt Marty’s wall.) I said, “She gave her parents quite a scare with it is what she did!” He said, “She did me too when I saw her in the elevator and I pulled up her scan right away and there’s nothing there, so…….what did you do to your eye, Christi?”

There were some older girls in the playroom drawing so she wanted to head back and not stay with Dr. Maris after her exam was over and that was just fine with me. Here’s how the 35 minute conversation went:

“What did you see on the scan?” he asked me. “I text messaged Shayne ‘overall subtle improvement’ but it’s still there.” He said, “Yes. It all looks better though, especially her liver, but we’ve now reached a fork in the road.”

He told me that he couldn’t say that one treatment was better than another and that we don’t exactly live around the block. I told him that I wanted him to determine what treatment was best for Christi- not based upon how difficult it would be for our family. He said something like when there are treatments with not enough know about them to say that one is better than another, he considers convenience. He went on to say that quality of life is very important right now for Christi and what she experienced all winter and spring was not a good quality of life for her, nor anything but horrendous sacrifice for the other three members of our family. He said he wanted to do the BSO-LPAN because he knew it’d get us home for a long period of time. Dr. Maris reminded me that the study doesn’t call for tests/scans to see the effectiveness of the drugs until day 60 and we tested Christi quite early at day 26. We still may see a small bit of improvement. He said he wanted to do test in case it didn’t work and there were new spots discovered they could jump right into something for her. He said that since nothing new was lighting up he was comfortable waiting about two or three weeks to get her blood counts up to qualify for another clinical trial.

He kept trying to get me to tell him what treatment we wanted next and I was determined not to tip my hand. If he makes a decision which is later determined not to work I’ll never see him again. I have to live the rest of my life with myself!! He said, “Come on. Now you thought about it. You talked with Shayne about this. What did you think was going to happen today? Did you think I was going to send you home on something? What did you think the scan was going to be like?” Finally, I answered, “I hoped the scan would have been a little bit better and yet I would not have been surprised to see a couple of new spots. Shayne and I haven’t spent many nights in the same state over the past six months and we really have not talked about this. We know Fenritnide is one of the few things she hasn’t yet tried and the west coast docs typically follow BSO with it, but that’s all I’ve thought.”

He told me that she doesn’t have the platelet count to qualify for Fenritnide and there aren’t even any open spots for her yet; however, she is reserved already in the next slot (dosing level four) but they don’t know how many weeks until that opens. (Gooooo, Dr. Maris! Always thinking ahead!) He’s hoping her disease just simmers and doesn’t take off until it does open. He thinks this is a drug that will help preserve her quality of life. (It’s all oral chemos which do not cause low blood counts and typically the kids feel ok on it and it does not cause hair loss- like the suntan lotion, hee hee.) He went over other options and re-stated that it’s good she still has options, even if he cannot say anything has shown much success because it has not. He told me that before she begins she’ll need to come back for a full work up of tests, but for right now to take her home and enjoy her and enjoy the time off from treatment for a couple of weeks. We’ll continue to go to the hospital for blood draws and wait on her counts and for a slot to open up in a clinical trial for her while our prayers will continue without ceasing.

SMALL WORLD: The girls were THRILLED about going to Girl Scout camp today. (This was going to be the night the fourth graders got to stay over night in their sleeping bags and tents!!) At 3:00 however my phone rang and I assumed the heat was too much for Christi and that she was ill. No, not at all! She was having a fabulous time, but a horrible storm was blowing in and could I come and pick up the girls? I was in class and Shayne was also more than an hour from home meeting with a client. Thankfully, the sweet Girl Scout leader came to our rescue by saying she’d take them home until I could get them. When she gave me directions, it was to my old neck of the woods!! I hadn’t been to St. Stephens for a very long time; it was great as I drove around pointing out the sights to the girls and they were in their own little world chatting in the backseat trying to ignore their old happy mother.

Philly Photos

Giving the Philadelphia Ronald McDonald House Executive Director the $2,000 check from the 4th Annual Christi Thomas Poker Run Fundraiser.





Dr. Maris cracked Christi up when he said, "I'll give you a free tip some don't learn until their 3rd year of medical school. Don't run into walls with your face; it hurts."

Giving Liz Scott $1,541.62 for Alex's Lemonade Stand for pediatric cancer research grants
Ironically, we found my mom and Paw Paw also stuck in the Detroit airport last night!!! God is good!

Udderly Funny

As you can see, the Christi Crew was out in full-force submitting captions for the cow pic we snapped last Saturday night. Thanks so much for giving us something to chuckle about in Philly with your caption contributions!

Udderly Funny Farsides:

"Kum bah yah, my Lord. Kum bah yah..."

"Ok, Bessie, your turn. Truth or dare?"

Beulah's last words were: "I wonder what would happen if we put this pop can on the fire?"

"And that's the story of the three-hooved wanderer. Rumor has it, he still roams these woods, looking for stray calves, with only a hook where his hoof used to be."

"No, I brought the buns, you were supposed to bring the hot dogs." "Are you kidding! Do you have any idea what's in those things?"

"Hey, Fred, check out the dorks in the van over there."

Moise on over to the O.K. Corral BBQ.

Okay, who wants a S'more?

At this month's club meeting, the Cows for Cultural Awareness decided they wanted to do something French. So they built a bon"fee-ray".

The Tiffin coven did their best to keep up appearances after "The Incident".

Ahhhh. It does smell better now.

Bar B Q anyone?

MOOOMMMMM!!! Bessie took the last marshmallow!!

Let's sit around the campfire, and sing our campfire song! (for Sponge Bob fans)

Cow 1: You want some roasted marshmallow?
Cow 2: Yeah, and some roasted beef would be nice.
Cow 1: Hey! Where's my cousin?
Cow 2: Errr....umm.....Gotta run!

Who brought the marshmallows?

Ethel! Get BACK! You're going to singe your eyebrows!

"Moo"mbyia, My Lord!

Throw another log on the fire, Fred!

"Roast Beef."

Who brought the hot dogs?

Anyone for S'mores?

Don't stand too close, you'll get WELL DONE!!
Moooove over!

All beef franks, I thought we decided on pork!

Did someone bring the marshmallows?

Not to be outdone by the competition, Burger King takes its flame-broiled burger concept to a whole new level.

"pigging" out on s'mores,

Gerty the cow looked up and moo'ed "Got milk?”
WHO forgot the marshmallows?

"We totally need smores dude"

Sooo.... who's going first?

Now that the herd could harness fire, they plot to take over the world.

Let's see those Guernseys on Brown's farm do THIS!

Beef ... it's what's on fire.

"Let's make S'Mooooo-res!"

Now that's what I call pre-cooked meals!

Who wants hot dogs??

What cows do when people are not looking.

Camping, cow style

Wonder what they are cooking over the campfire,chicken?

Moobyah, my Lord Moobyah

Okay, so who brought the steaks?

Bessie The Methane Bomb: Why Smoking & Cows Don't Mix"

Oh mmmmooooaaaannnn! My marshmallow is way on fire!

"Meanwhile, somewhere in a rural Ohio pasture, the elusive fire-breathing cow makes a brief yet memorable appearance."

"Finally out of breath, Bessie gives up on trying to blow out those darn joke birthday candles."

"Not only did the cows come home, they burned it down."

Smokey the Cow says, "Only you can prevent pasture fires."

The cows didn't quite understand the phrase "flame-broiled patty."

The annual company picnic takes a tragic turn when someone asks for a flame-broiled burger.

"This is NOT what I meant when I asked for a hot meal!"

Elsie, you gotta quit listening to The Doors.

Bovine Welding 101, final exam.

While on a field trip, Cowpoke Elementary School students uncover the briefcase from "Pulp Fiction."

"Anybody want another sa-moooooooooooooooooooo-re?"

Cows having some camping fun

I didn't know that cow dung burns!

Maybe we shouldn't smoke cigars so close to the cow dung pile.

I'd pee on the fire but my utter is stuck.

That Farmer Brown is a genius. He actually taught his cattle to cook themselves.

The Chick-Fil-A cows have taken their advertising campaign to a new level. On a recent Saturday evening, it is reported that cow correspondents in rural Ohio had a chicken roasting of their own. It is unknown at this time how the cows gained access to the chickens and fire, but authorities are investigating. In the meantime, the cows continue to moo, "Eat More Chicken!".

Home, finally

Nearly 24 hours after getting to the airport in Philly, Christi and I walked in the door to our home about an hour ago and of course Shayla just walked in too and discovered her hamster is dead. Weather in Michigan and Ohio cancelled many flights yesterday/last night and we spent many hours hanging out on airport floors and sitting all buckled up on runways which resembled parking lots.

I thank God that Christi is feeling well and was a tremendous sport about it all! She took everything in stride and made me so very, very proud to be her mother! Right now I'm exhausted, but I need to pack the girls up and run them to Girl Scout Camp then I'm off to class myself.

Thankfully, her disease showed a subtle overall reduction; however, her blood counts are too low to now qualify for any open clinical trials. We'll do what Dr. Maris suggested, "Take her home and enjoy her and her time off from treatment for a few weeks." And we'll also pray like crazy her blood counts rise and a slot opens up in a future study. More later....(and pictures of course)

scan results

The preliminary results indicate that Christi had a response to the BSO/L-Pam. Dr. Maris is recommending that we sit tight for a few weeks to allow her to continue to recover. We are on a waiting list for Fenretinide, however, there just aren't many other treatments left to try.

Angela and Christi are at the airport already.

Shayne

In Philly

Wow! I had no idea how many people must be reading Christi's blog and would bother to send funny photo captions my way. THANK YOU! Tonight, as I sit at the Ronald House watching Christi play with fellow warriors across the room, I am again humbled by the testament of His love you've shown me. THANK YOU! I'll post them as soon as I have time to upload them. They certainly made me laugh!

Despite being delayed in Columbus, we made our connection in Detroit and caught the train into the city right on time for Christi's first appointment. The MIBG isotope, which typically arrives right at noon, was delayed a couple of hours as it was accidently flown to JFK instead of PHL. Christi read a lot of good books and as always made the most of the delay. After the injection we went back to check on her blood counts.

They came back at:
9.2 hgb.
4.1 white
48 platelets (Showing us she's making her own; however, not high enough to qualify for any treatment that I'm aware of)
ANC 2,009
LDH 637 (Up, from 420 just two weeks ago, but still in the normal range.)

Tomorrow's MIBG scan will be the test of all test. I'll sit and text message a bit with Shayne for the hour long scan as the areas of disease will slowly light up in white on a monitor while my stomach will tell me I'm about to be sick.

Despite temps in the low 90s, and despite having luggage to carry, Christi did not want to hail a cab to get us to the Ronald House, so we walked. She did run through a sprinkler a few times when we came across one at UPenn. It helped cool her off on the long walk to the Ronald House. (The CHOP shuttle I used to catch no longer leaves every 15 minutes. Security told me it'd be a two hour wait until the next shuttle, just as waiting for the Ronald shuttle would have been.)

At the Ronald House, she presented them with the $2,000 check from the Friends of Christi for the 4th Annual Christi Thomas Poker Run. We are very grateful to have such loving and hard working supporters back home and we are incredibly proud to have presented such a large donation to our wonderful "home away from home" this afternoon. Upon checking in, Christi was happy to have a bit of mail waiting for her. She spent the rest of the night deciding which horse crafts she's going to make when we get home tomorrow.

The Far Side

OK, Christi Crew, here's the photo I promised! This is the "event" Shayne and I witnessed driving home from our "date" on Saturday night. When we started to drive past what appeared to be a family reunion of cows having a bon fire, we laughed out loud until we shook and tears poured out of our eyes. Now we need some captions! Thoughts? Please email us at Email@ChristiThomas.com and provide us with some much needed humor this week. I'll publish family-appropriate responses.

To Daddy with Love from Christi

Just About Time

Seems like it's always about time and making the most of it so I spent today's time like I do most others- enjoying these amazing little girls and trying to soak it all in! The wonderful Great Aunt Marty allowed us to overnight last night and she baby-sat while I spent all morning at OSU in class. We spent the rest of the day enjoying their wonderful pond and of course the minature ponies! Aunt Marty is so kind. She even borrowed four seven week old kittens for the children to enjoy.

Early tomorrow morning it'll be time to head to Philadelphia again. Christi and I'll head to the airport while Marty will care for Shayla until we return late Wednesday evening. I'm dreading the trip and the news it may bring. Thankfully, Christi continues to feel tremensous; however, the "sprouts of hair" she'd been growing over the past couple of weeks were all rubbed off today. It must have been a combination of the sunscreen and the sand she enjoyed rubbing on her head because now her head is completely smooth and shiny again! (Maybe she discovered a new secret technique to keep Daddy's bald head smooth! Hee hee!)

Thank you for loving Christi and our family! Thank you for lifting us up in prayer. Our meeting with Dr. Maris is scheduled for 9:00 AM on Wednesday. The best I can hope for is that she had a "response" of some sort to this treatment. I know the best of odds were that 29% of the 30 children achieved a response that held for 1-3 months, no more. No child became NED as a result. I feel like we've already received a fabulous blessing of one month; yet, I desire more, more time, more treatments, more of having Christi with us here on earth. Future treatment options are not promising- yet our only hope of gaining more time with our beloved daughter. Quite frankly, I'm scared. Your divine intervention is most welcome then, and always. It's all about time and I long for her to have 70 more years!

Reflecting on Father's Day

Six month old Christi & Shayne (Nov. 1997)

Six month old Shayla & Shayne (Aug. 1999)

Father's Day 2006

HAPPY FATHER'S DAY TO THE GREATEST DAD (and husband) ON PLANET EARTH!

Happy was I to chat with Alicia and Eric while riding to Aunt Marty & Uncle Jeff's and to learn that he was ok. Temps at the 100 mile bike race yesterday were nearly 90! Over half of the 175 competitors dropped out of the grueling race; yet, the amazing Eric continued on and on and on and on....for 11 1/2 hours of mountain bike racing! Praise God for not letting him get hurt as there were many accidents. Eric told me when he felt horrible or felt like quitting, he just thought of all those kids who can't do what he was doing and that there are others going through things much harder than a bike race with hills and valleys. I hope Eric updates the blog with his own version, but in case he doesn't I wanted to let you know how very proud we are of him and his 51st place finish!!

This afternoon we went with Aunt Marty & Uncle Jeff horseback riding at a stable/ranch not too far from their home. Later the girls also went swimming in their pond and they helped Jeff make the homemade ice cream. I think the pictures say it all. What they do not show very well is the fact that there is now a bruise appearing below Christi's left eye and we were sick about it until approximately one hour ago!

We know how this cancer loves to attack the orbits of the eyes and "raccoon eyes" are a common outward sign of the disease. All day I prayed that she really just hurt it somehow instead, but of course fear that was not the case. Shayne and I saw it as soon as we saw her this morning and felt like we were punched in the stomach. I felt like I couldn't get back to Philadelphia soon enough! Then tonight Shayla accidently bumped Christi's black and blue eye. Christi said it hurt because that was where she hit it earlier in Aunt Marty's bathroom. While I hugged and tried to comfort a "hurting" child, I gave a big thumbs up to Marty; Soon Shayne and I slapped a high five after Christi left the room! Now we believe it's nothing! Still.......Wednesday's MIBG scan can't come soon enough.


CT & Rooster
Shayla & Lucky
The week old calf loved CT.
Shayla and farm friends
Swimming - AGAIN!
Helping Uncle Jeff make ice cream.

Happy Father's Day!

We still have not yet received word on Eric. If the heat in Michigan yesterday was what it was here in Ohio, we do not believe he could have finished the 100 mile bike race. I shall call Alicia's cell phone and inquire later today because they were going to stay there overnight and come home today and I would assume Eric is still sleeping- at least I hope so!

Happy Father's Day to fathers everywhere and to those who desire to be fathers! As the 10th year anniversary of my dad's death approaches, I can say that I miss him terribly. I'm incredibly grateful that my own daughters have also been blessed with a tremendous father- providing them with guidance, wisdom and unconditional love. I'm also filled with gratitude to have a wonderful father-in-law and step-father who are just like my own! Happy Father's day! (I'll get some pics of the girls with their stellar father today when we go horseback riding.) For the other part of Shayne's father's day gift I had the girls make "Why I Love My Dad" videos yesterday when he went in to work. I've downloaded them onto the computer and I'll be sharing it with him soon. It was precious!

Last night was a riot! Having a former professional football player on our small team of five, I knew we were going to at least win the sports category at the Hayes Presidental Center's fundraiser ("a mystery history event") last night in Fremont. Well, let's just say that we did get all of the literature and art questions correct and our team is going to be studying up for next year! Regardless, we had a blast walking around an incredible museum, learning a lot and getting to know three lovely people better- rich blessings!

Driving home Shayne and I saw the most hilarious "event". Words cannot possibly describe it so Shayne will post a picture later this week (when we very well might need something to laugh about) and we'll see what kinds of captions you can come up with for the picture. Shayne and I spent at least five minutes sitting and watching with tears of laughter pouring down our faces. I haven't laughed that hard for years and when I tell people I live in the "middle of a cornfield" they're going to believe me now!

We'll be heading out shortly to the Kings to be reunited with the girls. While I knew they were in the best of hands, I was still worried that something may have happened. They were going with Marty & Jeff to a graduation party just down the road as Aunt Marty is also Katie's Godmother just like she's Godmother to Shayla and I. Christi & Shayla just wanted to get to Marty's to play so they weren't that thrilled about first having to go to a graduation party. Well, Aunt Marty's email put my mind at ease; it appears it was a hit! (Congrats to Katie H.) Aunt Marty wrote:

The girls have been perfect. They both fell asleep immediately and couldn't even stay awake to read a few pages in their books.

I must warn you that the Republic people may suspect you are shaving Christi's head and faking her illness as she was quite lively at the party. She and Shayla swam and played on the beach. They both got brave enough to swing out on a rope over the water and let themselves fall in. They loved it and kept going back for more. Don't worry, I was right there and the rope didn't let them fall very far into the water.

See you in the morning. Love, Aunt Marty

Final Day at the Ritz

"The Little Mermaid" (2006), age 9.






"Sleeping Beauty" (2005) Christi-2nd from left, with shades, age 8.


"The Jungle Book" (2004) Christi-far left, waving, age 7.





The Missola Children's Theatre is traveling all over the world this summer in 40 different units- teaching approximately 75,000 children! The girls had a fabulous week and Shayne and I continue to marvel at the little miracle girl who continues to feel tremendous. She was all smiles on stage again this afternoon! I'll email a video clip to Eric and let you know when he's able to put it on her main website so you can see the "Rising Star" in action.

Shayne and I haven't had a night alone since December. Tonight we're heading out to a murder mystery dinner in Fremont at the home our our country's 19th President- Rutherfurd B. Hayes. We'll let you know if we solve the crime!

While waiting for Aunt Marty & Uncle Jeff to come and pick up the girls for the night, I thought I'd post a few pics of Christi's previous years at Ritz Camp. The chances that she was home and feeling well, making her able to participate would never have happened without divine intervention. Thank you everyone!! What a blessing!

Best Wishes, Webby!!

This morning, Eric Cook, will be racing in the 100 mile bike race in Michigan. We'd like to thank all who were able to donate! We are thrilled, humbled and incredibly honored that Eric raised nearly $12,000 for the Children's Neuroblastoma Cancer Foundation. Our prayers are with Eric for a safe day of racing!

www.lumberjack100.com
www.active.com/donate/ecook

Eric says, "I picked the CNCF at the recommendation of the Thomas Team. This great organization is actually the one that brought Christi and the amazing Dr. Maris together. They met at a CNCF conference on Neuroblastoma in July of 2003 and it's a good thing they did. Those of you who spend a lot of time here at Christi's blog and on her website know all about this miracle worker. Unfortunately, due to lack of funding the CNCF is not scheduled to have a conference this year, which is quite a disappointment to anyone battling this deadly disease. Hopefully through my efforts and your generosity they will be able to hold their conference again next year."

We, and our fellow Neuroblastoma friends, hope so too! THANKS, ERIC!!

Another Weekend Back at the Ritz

Full Cast "The Little Mermaid"
Our ham celebrates a lovely week at theatre camp.
Cute little Seahorses (Shayla back row, far left)
The Seascouts were awesome (and funny)!
Fans from Fremont (Thanks, Jennifer!)
Christi wanted sweet Megan's autograph.
Using a permanent marker to "fix" the old kitchen color tiles. "Home improvements by Christi" (a budding Martha Stewart??)

Summer at Last!

Hearing the car door shut, I looked out and saw him- slowly approaching our door. With that unique walk I knew who it was. It had been a long time since we drove over to the new church. Had he been looking for us? Are collections down? Fifteen minutes after sitting and chatting with Father Joe (our priest) it dawned on me- he heard!! He knew! Not only did Shayne and I both read “The Divinci Code” last year, but we went and saw the movie last week while Aunt Vaunie was here to baby-sit. No, that wasn’t it at all. The wonderful Father Joe just dropped by to check on Christi and we see how we are all doing (and to donate to Christi & Alex’s Lemonade Stand fund). What a sweetheart!! We also talked about my being a full time doc student this summer so he knows I don’t have time right now to sit around and read any more fictional novels. Next to Christi’s promising platelet count, Father Joe’s visit was the highlight of my day!

Receiving Christi’s platelet count from the sweet hospital lady I only know by voice I happily shouted, “YES! I thought her treatment days were over! I didn’t think her platelets were going to recover!! We’re still in this fight!” (Poor phone lady- a victim of my joy.) Christi’s platelets are far from “pretty” but at 78 it indicates that she IS still able to make platelets. (And it’s obviously a BIG DEAL at our house….tonight as Shayne and I cleaned up the dinner meal, the girls were playing in the other room. We heard Shayla say, “Christi how are your platelets?” - indicating to us she wanted to do some rough playing, but needed to make certain it was safe first! So funny!!) So many clinical trials (including the one we’re eyeing- fenritnide) have requirements of platelets at a certain level. We know Dr. Maris can wave his magic wand for Christi on some things; however, requirements are there for a reason. The other blood counts were fine- at least “fine” in our world! Hgb. (down) 9.9, white- still going strong thanks to her stem cells working so well (4.7). LDH, 250- definitely NOT where we want it as it measures the tumor activity and it's obvious she's still brewing! (100-190 normal range).

There hasn’t been any news so I haven’t been updating. Christi’s been swimming a different homes nearly every night this week, has been to the library and going to Ritz camp each day. She also had a great visit to the orthodontist today who said there is still no need for braces and she’d see her in a year. (Oh, that made me suck in my breath! I hope so, Dr. Robyn!) Tomorrow night is the big show! The girls are very excited- and so are we to see “The Little Mermaid” performed live at the beautiful Ritz Theatre!

Thanks to the Ritz and to Aunt Marty & Uncle Jeff, we have a busy weekend planned. Then Aunt Marty will be caring for Shayla for a few days while I’m at class and while Christi & I are in Philadelphia. We are scheduled to fly in early Tuesday morning and to fly back to Ohio late Wednesday night (hopefully enrolled in a new clinical trial) - IF all goes as planned. (Ha ha ha! I’m laughing WITH you! I know. I know. Remember that scheduled one night over night which turned into over three straight weeks for Christi? Yikes!) In addition to seeing how well the treatment worked in Philadelphia, Christi will also be making the Christi Thomas Poker Run donation by presenting a check to the wonderful Philadelphia Ronald McDonald House- our lovely home away from home! We are so blessed!!

Tribute to Lovely Laura

I just got back in town and I see that Shayne has been busy blogging. Pictured below is Shayne's sister's Alex & Christ's lemonade stand in Phoenix (Thanks, Aunt Vaunie!).

Also, below is a tribute to a very special neuroblastoma warrior, Laura, who earned her Angel wings yesterday much to our (and most everyone's) surprise.

Soon I shall run and pick up the girls from theatre camp and get Christi to Dr. Vela's office for her required exam per the BSO trial. Then it's off to a pool party at one of her dance friend's homes tonight. (Can you say brrrrr? It's cold in Ohio today! We'll see if they really swim.)

In Loving Memory of Laura Spyek

This amazing young lady fought neuroblastoma for many years and traveled to many places for treatment including MSKCC in NYC and CHOP. We will forever be touched by her presence and we look forward to one day when we can be together in a much better place. God bless you, sweet Spyek family. Our hearts are breaking for you all!

Her mother's, Debbie, is a sweethaert and listed below is Laura's website. http://www.caringbridge.org/ma/lauraashley/index.htm

(PICTURE CAPTION: Taken just two weeks ago, Laura with her older brother-Mark and her father)