Support For Christi Thomas

This blog is to help offer support to the Thomas Family and their daughter, Christi, in her battle against cancer. Please visit Christi's website at to learn more. There, you'll find journals, photos and a lots of other information about this amazing child and her family.

A Note About Comments: When you post a Comment, please note that it will appear online after it is approved.

Saturday, September 30, 2006

Met Friends Walk in Christi's Memory

We could never possibly give enough thanks to all who've so lovingly helped us along the way. Strangers turned friends has happened many times. In NYC we were blessed to have my friend Becky fly in to give us some help once when Christi was hospitalized. Shayne and Shayla had been going to a free art program "Start with Art" a couple times a week and with Becky's help with Christi I was able to finally join Shayne and Shayla. They were right; the art program for preschoolers was absolutely incredible. With two beautiful and brilliant educators in charge, I was stunned at their expertise and ability to positively interact with very young children. As we sat on the floor of the Met and drew, Shayla mentioned that her sister was in the hospital. I ended up sharing Christi's story and these fine ladies just opened their hearts to our family - even driving down to Philadelphia to visit with us this spring. Today they had a long NYC walk in Christi's memory, walking to many of our family's favorite NYC places! Along the way they placed nine little pink teddy bears and a white flower to mark Christi's presence. What a blessing!

NITZA & CAROLINE: At 10PM last night Shayne looked at the clock and said, "If we drive straight through we can be in New York by 10AM!" Please know we were with you in spirit, 500 miles away.

Thank you, dear Nitza and Caroline!!! We love you!!!
The Met! (Enough said.)

Today Caroline leaves a bear on the statue where the girls played countless times on the grounds of the Met.

Another one of the girls' favorite spots in Central Park - the Balto Statue. Today Balto received a little pink teddy bear and a white flower in Christi's honor.

The Thomas team took a carriage ride once through Central Park and we loved it (March 2003). Today's sweet friends got a driver to put a teddy bear and a flower on his carriage in Christi's honor. Too kind!

Caroline and Nitza ending the walk this afternoon by lighting a candle for Christi at St. Patrick's Cathedral. Countless Blessings!

The Secret Photos from CHOP (Shhhh!)

Well, I knew I could never post these pictures while Christi was alive and we may be trying to get back into the hospital, but now that won't be happening I can share these treasured photos of the time a sweet Philly friend, who will forever remain nameless, snuck her aunt's kitty into CHOP in her purse. Great joy! Great memories!

Angels Erin & Christi

Shayne is spending the day back up thousands of pictures we've taken of the girls over the years. Here is one of Christi and Erin taken in June.

Just five days after Christi earned her glittery Angel wings a fellow NB Warrior Princess (Erin) also floated away from her little earthly body. Just as our girls enjoyed playing together at CHOP and at Ronald, I'm convinced they are now playing together in a much better place- and trying to find their way around together. Have fun, sweet Angels and don't forget to drop by and leave us "signs" that you are close by.

Erin's site is in Christi's Clubhouse at:'s_place.html

Friday, September 29, 2006

A Memory Walk in NYC Tomorrow

Enjoying the incredible Metropolitan Museum of Art in NYC

Central Park - June 2005, NYC

The Bears Outside of the Met

I can't possibly express enough thank yous and gratitude for everyone's kindness. When Shayne and I met with the wonderful Rich and Andrea Traunero at their funeral home this morning to make our final payment they asked if they gave me enough thank you cards. I told them that I wasn't planning on sending any.....Where would I even possibly begin? I hope no one is disappointed. (All Christi Thomas Memorial Fund donations given on line will receive an email receipt. If given directly, a recent will be sent.) So please accept this as our Thomas team THANKS and know that we will never be able to pay anyone back for all of their love and thoughtfulness, but we are dedicated to PAYING IT FORWARD!

We know that the months and years down the road will be the hardest. We're doing ok. Seeing Christi's room, where she LOVED being, and many of her belongings is very difficult and frequently moves us to tears. Picking Shayla up at religion the other night required me to bump into Christi's wonderful friends. Kids are great! They of course came running up to me to give me HUGE hugs, which I really loved even though I felt it was killing me inside. My heart hurts so much knowing Christi took great joy in being with them and it's hard. At the funeral home we asked many of them to please be like a big sister to Shayla now and they said they would. Shayne has been taking Shayla to and from school each day as that's way too much for me right now. He's been watching the sweet 5th grade girls play with Shayla on the playground. What sweethearts!

I knew I was going to break down the first time I heard Shayla call out, "Christi!" as she so often did when encountering something too difficult for her to do. Well, it happened this afternoon. After school she was working on this AWESOME Pokemon poster / sticker thingy (THANK YOU!) as she has been doing for days. I was in the kitchen when I heard, "Christi!" I went in and said, "Were you talking to Christi? I've been doing it every day even though she hasn't talked back to me yet." She giggled and said, "No, I just forgot." Losing your only sibling and biggest playmate - that's tough! Forgetting for a bit - that's good! May God be with Shayla.

We've been so touched to learn of moments of silence that have taken place before ball games and for a standing ovation at the Ritz which was so lovingly given in Christi's memory. Tomorrow will be a "Memory Walk" in NYC and trust me - Shayne and I checked into flights, but that just didn't seem like the best thing to do right now until my paycheck returns to what it was. I will get myself back to my love of teaching; it just going to be a matter of time.

Nitza and Caroline, the girls' teachers at the Metropolitan Museum of Art, will be taking a memorial walk in Christi's honor on Saturday morning. They will meet in the Astor Court of the Asian Art Galleries in the museum spend a short time in the Japanese galleries and then take a walk down 5th Ave., past the Bear sculpture in the playground to the Central Park Zoo, down to the horse drawn carriages at 59th Streetand finally to St. Patrick's Cathedral where they will light a candle in Christi's memory. Some of the Thomas team favorite NYC places and people! THANK YOU! We are so touched by this loving gesture!

Wednesday, September 27, 2006

In Our Hearts


"Her Smile"
Though her smile is gone forever,
And her hand I cannot touch,
I still have so many memories
Of the one I loved so much.

Her memory is my keepsake,
With which I'll never part
God has her in His keeping,
I have her in my heart.

Tuesday, September 26, 2006

I made it through yesterday!! Shayne and I went out to the cemetery yesterday afternoon and we did “ok”. While I don’t believe I will be a “cemetery goer” (smile) I can see myself returning this afternoon to read a book to Christi. Last night I taught my Heidelberg class and that was great as it forced me to get a shower, put make up on, hop back in a suit and heels and talk about another passion in my life- education for a few hours. I will also start back to my OSU studies today.

I don’t know how I’m going to face my real job as I classify school and Christi as going hand-in-hand. Did she not just write, "I love Mom" on my chalkboard after school? I was looking forward to a little sun and relaxation with my sister first. (Not that going on a short trip would change anything, but I thought it’d be nice regardless.) However, this morning I received my paycheck and again like last spring I see my pay started being docked the day Christi died, ugh. Even though I don’t think I can possibly do it, I may be returning before I’m ready.

Today I may join Shayne for a workout at the gym. I have lost a lot of weight in recent weeks, but Shayne - the witty one, reminded me: "Muscle weighs more than fat and sitting for days in Christi's hospital bed wasn't exactly a workout of any sort." I was able to eat yesterday. (Who can turn down Wilma's lasagna?!)

Prior to the first day of visitation at the funeral home Shayne and I pulled Shayla on our laps and talked with her about what she may experience. Shayne told her, "People are bad at funerals." She stared at him and then inquired, "Do you mean bad like they run around and break stuff, or do they hurt your feelings?" (What a hoot!) Shayne went on to explain that no one really knows what to say at a funeral home and things can be said that do hurt your feelings even though people don't intend to do that.

Monday, September 25, 2006

Reality Arrives

Thanks to the Advertisr-Tribune for sending me this picture this morning. It was on the front page of the newspaper yesterday. What a send off; so sweet!

So today the reality of the fact that beatuful Christi is really gone is beginning to hit. Last night Shayla and I were trying to get to sleep in our bed. For a very long time, she was really wiggly, but she didn't want to talk and then she disappeared. I gave her a few minutes before setting out to look for her. I found her tucked in and weeping in Christi's bed with the covers pulled up over her head. She's missing her big sister terribly, as we all are. Yesterday in church Father asked the children what nice things they could do for their brothers or sisters. I felt like I had been punched in the stomach as my tears fell down on top of Shayla's head knowing her sister is in Heaven and she's going to be stuck with these brother/sister questions for the rest of her life.

Much to my shock, Shayne returned to work this morning and Shayla returned to school. I don't know how they did it. Everyone has told us this is when it just begins to get hard. I just look at Christi's brand new bookbag sitting here and I can't stop crying. School was a place where we were all safe; something we all did together, a place we all loved. How can I even walk into that building without Christi beside me? The week they were in Philadelphia and I was back at work there was a fire drill. As I reached out to close my classroom windows prior to vacating I saw Christi's class marching down the sidewalk and it literally took my breath away. I can't imagine seeing her class and knowing she's not just in Philadelphia; she's really not here at all. Her classroom was directly below mine this year and we would tease each other that we were going to pass notes up and down in a bucket. How we both adored her teachers and knew she was going to have a great year. That week Christi & Shayne were in Philly Shayla came up to my classroom after school as that's what the girls do (typically playing "school", until I finish up) and Shayla asked, "Where's Christi?......Oh, I forgot." I'm so fearful that will happen again. I'm so fearful that no one will mention Christi's name as they'll be afraid to upset me, when there's nothing worse than thinking people have forgotten her already. A couple of weeks ago the Labor Management Committee decided they would be putting me on an unpaid leave (FMLA) so I know I must return to work as the bills which haven't stopped for the past four years won't for many, many months so I've been told. Additionally, my insurance and retirement are being affected adversely as a result of not being able to work yet, but I'm just not certain when I will be emotionally able to do that. I know I must be able to have control of the situations in my classroom and right now I don't even have any ability to control my own body. I just look at a box of Christi's breakfast cereal or her handwriting on a paper she left around the house and fall apart.

Sunday, September 24, 2006

The Riderless Horse

Thanks to the Trauneros I was able to get a picture of Kelsey leading the way from the funeral home to St. Mary's as she walked "The Riderless Horse".

This morning after church I thanked one of the beautiful cheerleaders and told her how lovely it was they were there, but they should have done a cheer. She told me, "We did, but you probably didn't hear it." I knew they had a large huddle around Christi's casket and I heard some awesome giggling, but that was it. I inquired, "Which cheer?" She said, "1, 2, 3, we love our Chrsiti. 3, 2, 1, she's our little one." (Oh, now talk about making me cry - sooo sweet!)

One in a Million

I'm certain Christi would have wanted to say THANK YOU to everyone for sending her off with style yesterday. Please accept this instead!

I didn't realize it until Eric's Eulogy yesterday morning, but yesterday was the 4th anniversary of the creation of her website and yesterday her website received it's one millionth hit. Late last night when I couldn't sleep, I checked my email and saw a sweet Christi fan emailed and said, "How appropriate Christi should receive her one millionth hit on the day she is buried. She was definitely ONE IN A MILLION." I couldn't agree more! We'll probably never know how many hits her blog had, but about a week before she died, Shayne put a counter on her blog. Within 48 hours the blog had received over 58,000 hits. (That's a lot of love and concerned people checking in to see how she was coping.)

Last night, WTOL aired a 2 and a half minute video about the funeral. It was very sweet and touching. If you'd like to see it go to then click on the video section "Saying Goodbye to Christi Thomas" and it'll come right up. I'll admit I was hesitant when the funeral director told us WTOL had contacted them and would be coming down, but it was very well done. (THANKS, WTOL for helping us to celebrate the Angel who graced us with her life and who will continue to bless us from Heaven.)

Funeral Funny: After Rich and Andrea Traunero left last night our home was filled with lovely flowers. Shayne said to me, "Don't think of it as sleeping in a funeral home, think of it as living at the Plaza!!" (An outrageously expensive hotel in NYC where we once splurged and treated the girls to High Tea following their "prom" at the hospital. Great Memories!)

Funeral Funny:
Because of the radiation, Christi would have again been bald if she had lived just one more day. Her hair was really starting to fall out. As we said our final family goodbye to sweet Christi Shayne said, "OK, Shayla, you can pet her hair all you want to now," so she did! I really thought I heard Christi yell, "SHAYLA!!!!" (And in a very special keepsake box, I put a lock of hair Shayla collected yesterday and wanted to keep.)

This morning we'll head out to Mass and then spend time with my family before they head out tonight. God bless you all!

Saturday, September 23, 2006

Princess Christi's Royal Sendoff

Princess Christi receives the royal treatment.

It was like the town stood still. Never could I have imagined the kindness and love displayed by hundreds today! I really should be without words as I won't do human kindness justice with this blog entry...

Greeting me this morning was the wonderful Advertiser - Tribune. For a third day, they had a huge color photo and another lengthy front page article about Christi's life here on earth printed. Here's the link if you're interested:
Saying the final goodbye to Miss Christi before her casket lid was sealed this morning at the funeral home was of course very challenging. Thankfully, we were surrounded by dear friends and family all day even if at times I couldn't even stand to look at - much less talk to, anyone. I apologize; it's just so hard.

Christi loved her pallbearers so much and they took the greatest care in tenderly carrying her little white coffin adorned with her picture.

Kelsey Grine did an amazing job of providing Christi's escort by leading the way with the "Riderless Horse" from the funeral home all the way through downtown to St. Mary's. Shayne, Shayla and I were incredibly humbled riding in the limousine to see people along the sidewalks touching their hearts, or in prayer as we slowly trotted along. All the police officers in the finest of uniforms proudly stood in the most beautiful strong "salute" positions; what gentlemen. Kelsey put her hat over the saddle and it was precious. I hope someone got a picture; I didn't. (Kelsey brought that same beautiful white horse which was used at Christi's 9th birthday celebration they provided for her in May. How appropriate!) Kelsey said the horse was very cooperative and only whinnied upon our arrival at St. Mary's. (I guess those waiting in church, watching the photo display and listening to the harp, knew we arrived then.) Kelsey said the only time the horse was uncomfortable was when Christi's coffin was carried up from the motorcoach hearse and into the church. Regardless, Christi would have loved it all!

As the pallbears brought Christi in, "Here I Am Lord" was the first hymm. I selected this one as it was one of Christi's favorites and I kept reflecting upon the many times she was beside me singing it with her beautiful little voice. Father Joe did an amazing job and really personalized the Mass and all who participated were just incredible. The eulogies were perfect and Christi's three friends and her cousins mustered up the courage to read the greatest of poems. The music was absolutely breathtaking. Church was full and we felt surrounded by love. We again, we are humbled. (Shayla was as good as gold all day. Despite the fact that Mass alone was an hour and a half long, she only asked me one time, "How much longer?")

After church, her coffin was placed inside the horse drawn hearse. One hundred fifty pink and white balloons were then released in rememberance of her precious life; it was lovely. She would have really liked it!
150 balloons danced their way toward Heaven.

Proceeding through the rest of town, it was like the town stood still. Shayne and I were simply stunned by the number of people out on their front porches and along the side walks in total silence paying so much respect to this fallen hero.

Many have told me in recent days that it wasn't "our Christi" it was "everyone's Christi". Andrea informed me that the procession was two miles long! Special touches, which really caught us off guard, were the many signs held up about this beautiful new Angel and of flowers placed down on the ground as the horse, carrying her coffin, slowly rolled by. Shayne and I cried rivers of tears at how kind, thoughtful and generous people were for miles.

Although I worried that the motorcycles were going to scare the horse, I shouldn't have been. All worked out fine. They waited to "fire up their engines" until Christi's casket was transfered back into the motorcoach hearse. Oh how Christi loved that sound! At the many Poker Run Fundraisers the "Friends of Christi" did in her honor and even for the last one in June when I had to hold my phone next to her in her hospital bed in Philly, she just giggled and said, "Wow! That is really loud!" Nearly 70 motorcycles next lead the way for the miles out to the Seneca Memory Gardens Cemetary where she now rests beside my father, her Grandpa Vince.

Father Joe provided final blessings and prayers and then we released the doves. (Actually, white honing pigeons hopefully now safe and sound back in Lima, was lovely and precious - just lke Christi's little life.) Shayla loved her "dove" so much she actually kissed it! We each released one and then we all three together released the fourth one - to represent letting Christi's spirit soar in Heaven. At first three joined each other in the sky and then the fourth one (Christi) caught up with the other three. They then circled around together before heading off on their journey which most likely only took about two hours to fly that far. (Ya know how Shayla has a hard time parting with things....I kept thinking she'd try to keep her dove, but she was fine with it and let it go. Whew! Thanks to Andrea for letting her feed and water the doves last night at the funeral home!!) The Thomas team (trio???) expresses their deepest thanks and appreciation to Kelly & Tom for providing the "Wings of Love" for us after I inquired about it a year ago. We were neighbors with them in NYC at the Ronald House and without a doubt their son Carl- another victim of neuroblastoma, was waiting at Heaven's gates to welcome Christi Home. Shayla loves her dove!

Tom and Lori and their families did another incredible "Uncle Dudley's" catering event for our family and they served the two of Christi's favorite foods I asked them to prepare in her honor - hot dogs and mac & cheese! The desserts were incredible. As always, it was all exceptional and we are full of gratitude to everyone. Friends came from far and near again today and we are so humbled by the great distance many of them traveled. Please accept our gratitude and please know how humbled we are!

So now we're back home and all is quite. Shayne and I continue to shake our heads that so many people chose to spend the whole day with us. True blessings so lovingly displayed; thank you! God is good!!

Tonight we will watch Channel 11 Toledo News at 7 PM and at 11 PM as they were there taking footage today. I'll send you the link when it's available. We have a lot of unpacking to do as we never unpacked from what turned out to be our final stay in Philadelphia. That, along with our healing, will come in do time. I will update again soon. Thank you, dear supporters! You've richly blessed our lives!

"Lifting us Up!" Thank you to Rich and Andera Traunero for literally lifting us up - and working tirelessly for us over the past week.

Friday, September 22, 2006


Shayne and I witnessed unbelievable kindness today/tonight hearing so many lovely things about this special little girl. Hearing she was a "Saint" was most moving to us. Touched doesn’t even begin to describe our feelings by the outpouring of love and support. Additionally, we are just speechless by the “Christi Fans” who drove 7, 8, even 10 hours to come and express their sympathy and to tell us the role she took in their lives. We continue to be “numb” like we are going through the motions and that is all. Also, we remain absolutely exhausted and drained.

This morning was difficult as it seemed to be a typical Saturday when Shayne and I would cuddle on the couch and wait for the girls to come down and climb on our laps. Shayla did…….I kept thinking Christi would come bopping down the stairs, joining us on the couch and asking us if she could have cereal for breakfast, but she never did. I think next week it will really hit me as our new life without Christi begins.

VIEWERS DESCRETION NOTICE: I will warn you that at the bottom of this entry are pictures of her in her casket. I think she’s beautiful, but I have always been a bias mother! I’ll add a story here which contains a funny “inside secret” to take up some space but please know what’s listed below. In case you do not want to view it, do not read on.

Tonight the Trauneros informed us that Toledo News 11 will be coming tomorrow, but will be descrete. Additionally, 750 “Memory Booklets” have been distributed. So, since many of you may now have the memory booklets, please take a look at the very last picture – the picture beside the poem Christi wrote about herself. She is cuddling a little kitten in the picture. While the background was cropped out, I hope you smile when you see that picture after hearing this story behind the adventure that night…….

This April Christi was hospitalized with low blood counts and the days seemed to go by slowly. I knew at that point the only thing that could possibly make Christi happy would be to have a kitten to play with. Well, kittens are prohibited on the cancer patients’ floors but Christi’s counts were “decent” and I was willing to risk it to make her smile. Now my sweet partner in crime from Philly will always remain nameless and while we never told the story in case CHOP would learn about it and watch us like a hawk in the future, all bets are off now.

The stage was set for our friend to sneak her aunt’s kitten into the hospital. It was so tiny it actually fit inside her purse. Christi, who believed that rules were meant to be followed and who did not like making exceptions, decided it would be okay this time. (smile) The kitten was coming about 7 PM so at 4PM we did something very unusual for our typical hospital stays. We drew the curtain around her bed, shut our door and posted a big sign on the outside, “PLEASE KNOCK BEFORE ENTERING”. (We thought if the nurses would get in the hang of it hours early they wouldn’t think a thing of it. We thought a knock on the door would give our friend time to scoop up the kitty and hide it somewhere in the room.)

At 7PM our friend arrived with the kitty in her purse. It was probably the cutest thing I ever saw. Christi had so much joy, even though the kitty had loud “meows” which made me jump each time. Since the nurses “left us alone” most of the day we figured we were all set, but what do you know? We had TWO nurse check ups while the kitty was in our room during that hour and a half. Our friend wrapped her up and quickly dashed to the other side of the room pretending to read some of Christi’s books both times the nurse came in and they never knew Christi was having a delightful time with a prohibited kitten. So…….I’ll leave the Columbus Children’s “bubble story” for another time I need to stall!

While it doesn't show up too well in the pictures, Christi is with her: sketch book from the Met Museum of Art in NYC, ballet pointe shoes, Hank the Cowdog Book, COSI and Cedar Point Passes, a baby grand piano music box, a "Buttercup", "Buckeye" and a horse, a cross (which Shayla will keep the matching one of) and she is also wearing her flip flop ring and her baby ring - the ring Grandma Nee Nee gave her at birth, the one she is wearing in so many of her baby pictures and the one she was to wear on a necklace for her wedding. A baby ring should not still fit on your finger when you are put to rest. UGH! I will have the beautiful Jesus necklace she received from her Aunts on her First Holy Communion removed before the casket is closed and put on a longer chain so that I can wear it in her memory. Her friends from school tonight gave her the "Chatty Cathy Club" necklace which she'll take with her and they each have one now too. (Precious) God, please bless and comfort these lovely children!

With Us in Spirit

Shayne and I continue to survive by feeling numb, being busy and actually still feeling exhausted from the hell endured over the past three weeks. Perhaps that’s no different than the way we lived our lives over the past for years. While I truly soaked in every moment and have memories of this sweet little child to treasure forever, I thought if I lived in denial and kept busy enough, it’d never really hit me that my baby had a cancer for which there was no cure. It truly hasn’t yet hit us that she’s gone. I guess she’ll always be “with us” in spirit. (And I just keep thinking she’s up in her bedroom working on a craft project and reading or something.) Yesterday, at the funeral home I kept glancing over at her little casket expecting the funny little jokester to pop out and say, “How did I do, mom? Did I fake you out?! Can you believe people said I looked beautiful? My best feature is my blue eyes and they closed them! How about Shayla patting my head so much that she left a bald spot?!” Oh how she would have loved to run around the funeral home playing with the many friends who came to tell her goodbye.

Over and over Shayne and I have said that was the most difficult thing- watching Christi’s little friends come up in tears and not knowing what to say to them regarding the senselessness of this tragedy. It was absolutely heartbreaking. Christi had many, many friends and they brought her incredibly joy. I only hope that they realize she’s always with them in heart and spirit and that they gave her so much by not knowing how terribly sick she really was and by treating her as a “normal” kid – exactly the kid Shayne and I wanted her to be! Shayne and I feel horrible that we’ve done this to her friends’ parents. We know some of these kids are just devastated and it is so very painful.

Also, challenging for me was trying to talk with many of my sweet students and former students who came last night. They shouldn't see their teacher crying and lacking composure. As one not often without a loss for words, they just weren't coming to me as I could see their pain to and thought that this is probably one of the first times they're experiencing death - and the death of a child. I didn't know what to say and my heart hurt for them.

It was a week ago today that Christi had her last “good day” (if you can call what she went through at the end a good day). She spent some time on the computer and pretended to be daddy lifting weights with two bread sticks making us crack up. She always loved those American Girl quiz books and a sweet “Christi Crew” member from afar sent her a family one which we did together until she drifted off to sleep.

It was at that point when I realized I’d better leave denial mode and switch into serious funeral planning mode so that I could continue to live my life with “no regrets”. Over a year ago, Shayne and I had selected the Trauneros to take care of Christi’s arrangements and we really appreciate their total confidentiality in the matter. I knew times would be cruel and it’d be easier to do much ahead of time if possible. From the computer Shayne rigged up at the hospital which allowed me to type right from Christi’s bed, I had countless emails with Andrea and with MLAD. Shayne said many times, “Having the Trauneros just makes sense doesn’t it?!”

Although at different schools, Traunero’s daughter and Christi are in the same grade and share common interests. Although Christi hated flying in small planes because they always made her carsick, on two occasions Rich flew us back home from Philadelphia through his incredibly kind services as an Angel Flight pilot which Christi was most grateful about. Many Angel parents told me that one of the hardest things is after telling your kids never to go with a stranger, turning your kid over to a complete stranger so I knew that I wouldn’t do that, instead I’d turn her over to another mother knowing Andrea would fuss over her when I couldn’t anymore. (Well, that didn’t exactly happen as I never ever expected her body to sit in an inner city Philadelphia funeral home for over 24 hours until they allowed Rich to fly out and bring her back, but I was moved to tears by the compassion I learned of when the social worker called and told me that Christi was with her (or her nurse Amy) until they came to remove her from the hospital.) The Trauneros have worked tirelessly and I can’t possibly say enough about this wonderful couple and what they do at their funeral home.

Also working tirelessly has been Deirdre and Mark. Knowing I wanted everyone to have a little memory / keepsake book of Christi’s amazing little life here on earth, I only wanted THE BEST! Therefore, over a year ago I asked Andrea Traunero if I could have Mark Levens at his advertising / design business- MLAD, create booklets with pictures and noteworthy events in her young life. I’ve always been overly impressed with Mark’s quality of work and I can’t even express how nice these keepsakes are! Days ago I emailed roughly 90 photos to MLAD fully expecting to receive an email back saying, “Nice pics, mom, but now cut it down to 10 for the books,” but they didn’t! They used every one I sent!

Additionally, I felt that handing out bookmarks would be symbolic of Christi’s life and love of reading so MLAD also put a poem I gave them along with her picture on these lovely bookmarks and printed those too. I hope they help her memory to live on and to continue to inspire others to put their problems into perspective and, if I may borrow a quote from Christi- to “enjoy what you have while you have it,” (age 5).

Yesterday’s calling hours were very, very sad – especially initially. Shayne and I asked to have some private time with Christi as we’re just feeling like we can’t get enough of her; therefore, we arrived before noon and we had an hour alone with CT. Saying it was “difficult” to see her in that little white coffin would be an understatement, but we did both think she looked just like a princess. Friends and family were so sweet in coming to pay their respects and by telling us how she’s given them a new perspective on their own lives and that they’ll never forget her. Many told me that they’ve read every journal and blog entry I posted over the past four years and that I should write a book. Well, I have killer candidacy exams to pass and a lengthy dissertation to write first…..maybe someday when the pain isn’t so raw and fresh. (I was incredibly touched to see a beautiful peace lily wrapped in scarlet and gray from my OSU friends.) Christi taught me how to live, so I guess I’ll put “Capture Christi’s Story” on my “to do list” just like Christi always had a list of things going that she wanted to do. She taught me well!

I would like to somehow get all of my journal and blog entries printed out. If you have any ideas about a good way to do this, please let me know. Some, but not all entries are saved, yet they're in a variety of places as we've had computers and disks come and go over the years. I don't know if they can just disappear from the Internet or not, but I would think that is a possibility and it frightens me. So many times I thought we'd sit on the front porch and read them as Christi neared her graduation. Now I only hope that they'll help Shayla heal and grow when she's older. She was only three when Christi was diagnosed. From the time she could remember, her sister had cancer and she'd been put on the backburner. I think reading all we endured over the years will allow her to understand that it wasn't that we didn't love her equally, but that we were trying with all our might to save her best friend's life when the odds were totally stacked against us. We weren't successful and our heart breaks for Shayla. No one should grow up without a brother or a sister available to them in life.

Buttercup, the cat typically found lounging in Christi’s bedroom hasn’t left the foot of our bed instead. It’s almost like “she knows”. Shayla is being very loving to Christi’s cats, now calling them her own. (Something Christi wrote in a diary that she doesn’t like.) Shayla has sobbed many, many times since we broke the news to her Tuesday night. At the funeral home she cried a river of tears which left huge tear drops all over the top of her black velvet dress. Later when her cousins arrived and when her friends came to pay their respects, she was back to her old self running around, talking and playing. I believe this has been and will continue to be devastating to her. We are very worried about Shayla as she lost her best playmate. The girls were so in sync with each other; they shared more than we’ll ever know. (In selecting Christi’s jewelry I picked out a flip flop ring in her birthstone color to symbolize Christi’s love of flip flops. Shayla said, “Josh gave her that and it’s really a toe ring, mom.” Two things I had forgotten or I never knew.) Shayla did manage to leave Christi with a small bald spot, but I hated to hurt her even more by removing her hand off of Christi’s head. (The radiation would have caused baldness which started happening about a day before she died. Shayla always loved touching Christi’s very soft hair and I let it go on a bit before I apologized for having to remove her hand from sissy’s head. The look on Shayla’s face after she saw that wisps of hair were flying all over the casket as a result of touching her hair, will not be forgotten. (And I could just hear Christi bending down from Heaven shouting, “SHAYLA!!”)

Having lost 17 pounds in about 9 weeks, I’ve been eating the food that has been so kindly shared with our family – thank you! Additionally, I’d like to say thank you to my great friends Shari & Anne for putting together a picture / keepsakes display! I know they were at the funeral home working hard for hours and I’m very grateful. It’s nice to share happy memories of Christi with others and Andrea had done so much I just couldn’t dump all of that on her “to do list” also.

If you’d like to scroll down, pictures were added last night – thanks to Eric, in Wednesday’s blog entry so it now includes the dress she will be buried in. (How about my $39.99 Ebay bargain for a new dress with tags from Los Angeles?!) The big relief was when Andrea let me know it actually arrived and was gorgeous. Also, you’ll find a picture I snapped of the gorgeous Tuesday night sky, even though my picture doesn’t do it justice.

WARNING: Yesterday, Shayne and I snapped pictures of Christi’s body in her coffin. Before Christi died I would have thought that was terribly morbid, but you see I’d never lived in these new shoes before and we found looking at her yesterday that it was still our daughter and that we thought she was just perfect. Additionally, other Angel mothers have told me to take pictures as they wish they had final pictures of their child, finally resting and looking so peaceful. We did and I will post them soon. Please do not check the blog if that will offend you. That’s truly not my desire, but to share our story in hopes of helping others and allowing us to put closure on this chapter of our lives. Many have followed Christi’s journey from afar and will not be able to travel to Tiffin, Ohio. I hope the pictures help bring them healing, comfort and closure too.

Still……I just can’t believe after being what seemed “down and out” so many times and somehow always bouncing back that she just didn’t have just one more little comeback in her.

Missing my sweet pea,

Thursday, September 21, 2006

Newspaper Stories

Photo taken about 8:20 AM Tuesday.

The Advertiser-Tribune has written two sweet articles about Christi . Here are the links in case you're interested. (Thanks, Jill!)

Wednesday's Story:

Thursday's Story:

Christi's Obituary:

Wednesday, September 20, 2006

Farewell, Courageous Christi

(PIC: Christi's "Going to Heaven Dress")

Quite frankly, it wasn’t an uphill battle, but a downright bloody war. When it ended yesterday morning, our brave and beloved little soldier won and received the ultimate prize of eternal life! Congratulations, Christi……but we love and miss you so!

After what turned out to be her final foot massage about 8:25 on Tuesday, I took off to update the blog. An unbelievable twelve minutes after I updated the blog yesterday, Christi took her final breath. After spending days ‘locked’ inside her hospital room – afraid to leave for fear I wouldn’t be there or I’d be asleep when she passed, I just stepped outside to let Christi’s faithful supporters know what was going on. I returned and chit chatted with one of CHOP’s most awesome nurses (Amy) about her college – Pitt. Shayne noticed that Christi’s breathing had changed and he said, “Angela”. I quickly went over and sat down on her bed as we both realized she just took her final breath. Sweet Amy quickly said, “I’ll give you guys some privacy.” About a minute and a half later, the little jokester got us good – she did a big exhale again which actually made us laugh. We again said goodbye. Then….about a minute and a half later – she did her final exhale which again made us laugh in between our sobs. We knew she’d go out with style! And right on the dot, for someone so consumed with time – 9:00 AM!

I feel like Christi waited until we were both at her side. What a sweetheart! That had become a huge stressor for us, both scared that if we left her or took our eyes off of her for a second that she’d pass on to a better place without holding her hands. I would have felt horrible if I had not been there.

Dr. Maris arrived about 25 minutes later, along with the great Pat and Dana to give us their condolences. Dr. Maris got all of the blood draws that he needed and not only is he sending it to LA, but he will also be trying to establish Christi’s cell line at CHOP too. It will be 2-3 months until we know and our prayer request is that they are actually able to establish her cell line so that they can research ways of how to cure this difficult beast which kills most of the kids diagnosed with it.

We had a very hard time leaving Christi. Although the room had been packed up and the van loaded well ahead of time, we just couldn’t part with this beautiful child who just looked like she was sleeping. Her little beautiful body stayed warm for the longest time and after an hour and 45 minutes we knew we had the drive of all drives to make back home to Ohio – a drive without our daughter so we forced our selves to leave. With tears, and knowing we’d never return, we checked out of the Ronald McDonald House and donated Christi’s big blue jogging stroller, hoping other kids will benefit from it. When the social worker called me hours later and told me Christi was with her or her nurse Amy until they came for her. The thought of her spending the night alone in an inner city funeral home, waiting to be shipped out to the airport, was not a pleasant one for me, but with the out of state law requirements which had to be met, there wasn’t a better way.

The drive home was long and difficult, but interestingly enough once we crossed into the Ohio border the sky changed and we could see those beautiful beams of light shining down, just like Heaven had received a beautiful Angel. Before we left Christi’s body at CHOP Shayne told her, “If you have any magical powers up there now, then part the Schuylkill Expressway and clear the turnpike too!” Sure enough – we scooted out of Philly and cruised along the various turnpikes without any traffic problems (Thanks, Christi).

We didn’t want to share the news with anyone until we told Christi’s little sister in person that she just lost her biggest playmate and older sister she adored. We walked in, grabbed her and sobbed our eyes out. I didn’t expect Shayla to be emotional, but she sat on my lap and sobbed with me. She took a bath later and asked for privacy. When I peeped in on her, I again found her sitting in the bathtub crying. We knew going into Christi’s favorite place in our home – her bedroom, would be the hardest and it was. So many of her favorite things surround us, so many things she had been in the midst of. Little sister, Shayla, soon discovered that all of Christi’s toys were now her – so that was a big plus for Shayla. She also discovered that her diary key fit into Christi’s diary so we’ve now read many entries and cried out eyes out with the memories. (Did you know she hated taking her medicine? I was quite surprised as she rarely complained. What a trooper!)

Today, Shayne and Shayla have painted a lot of pottery. Shayne and I also spent a few hours with Andrea Traunero working on the arrangements for the royal sending off for Princess Christi. Everything really is coming into place. Her casket is lovely – if such a thing can be lovely. I was just really caught off guard by how little in size it is. Kids aren’t supposed to die I guess as I’ve never seen a smaller coffin. Regardless, it is very pretty with our family photo on the lid so she can look up and see that we’re always with her. The handles are surrounded by her beautiful picture. I also asked to see her white gown which will be beautiful for her ballet dancing on the stage of Heaven. Andrea put it in the coffin and I think she’ll be beautiful. Rich had a long day flying out to Philadelphia to give Christi her final flight and I could only comfort myself by telling myself this will be the only tiny plane flight that she never got “car sick” on. As of this point, Christi is at the funeral home and we will see her at noon tomorrow.

Visitation will be from 1 – 7 PM on Thursday and Friday at the Traunero Funeral home in Tiffin and her funeral mass will be at 10 AM at St. Mary’s. Our good friends, Tom and Lori Leis, will be catering the funeral luncheon back at St. Mary’s following the dove release at the Seneca Memory Gardens. All are invited. I’ll post her obituary as well – truly harder than any paper I ever wrote for any Professor, truly the most difficult thing I’ve ever had to write. I only hope it does her justice!

The Thomas team requests that memorials be made to the "Christi Thomas Memorial Fund” so that her spirit can live on.

The Obituary of a Brave Prioneer

Christine S. Thomas, Seneca East 5th Grader

Christine Shayna Thomas “Christi”, the beloved and cherished daughter of Shayne and Angela (Falter) Thomas of Tiffin, Ohio was called home at 9:00 AM on Tuesday, September 19, 2006 at the tender age of 9 with her parents at her side. For four straight years Christi battled Neuroblastoma – a childhood cancer. She bravely fought with the strength of a soldier while maintaining the grace and beauty of a ballerina – teaching life’s lessons along the way. She will forever live on in the hearts and minds of thousands around the world who knew her both in person and through her website which recorded her incredible journey.

On a glorious Monday afternoon, Christi was born in Mercy Hospital of Tiffin, on May 12, 1997. In addition to her parents, she is survived by her best playmate and little sister, Shayla, who adored her and her two cats Buttercup and Buckeye. Other special loved ones include her grandparents: Joan Gear of Port Clinton, OH, Lowell Thomas of Kentucky, Joe and Carolyn (Falter) Jolliff of Upper Sandusky, OH. Great Grandmothers include Dixie Gear of Crestline, OH and Mary Falter of New Washington, OH. Godmothers: Aunt Vaunie Thomas of Arizona and Aunt Tina (Gil) Laterza of Mason, OH. Cousins include: Josh Thomas of Arizona, Ashley, Shelby and William Laterza of Mason, OH. Special friends: Mrs. Donna Pryor, Traci Weaver (Harriet), and many school friends. Greeting her at Heaven’s gates was her Grandpa, Vince Falter and her Great Grandparents: Bernard Falter, Joe Gear, Harold & Germaine Smith and Emerson & Bertha Thomas.

Throughout her young life, Christi was able to touch the lives of many with her compassionate personality, incredibly bright mind, captivating smile, and her continuous bursts of giggles. A “pint sized hero” with a huge heart, Christi sponsored many blood drives which earned her the Clara Barton Award – the Red Cross’s highest honor. Additionally she held Alex & Christi’s Lemonade Stands raising over $12,000 for pediatric cancer research. Her artwork was featured by CureSearch, printed on greeting cards, and earned her a special invitation to the White House.

Christi absolutely delighted in learning. She was a member of the 5th grade class at Seneca East, received gifted education services from Bridges Academy, and scored a perfect score on the state’s reading achievement test. Christi was identified as a profoundly gifted child and was a member of Mensa – the High IQ society. In addition to school, Christi took pleasure in taking piano, ballet, jazz and horseback riding lessons. She was a Girl Scout and a member of the Catholic faith where she was in CCD, baptized in June of 1997 and received the Sacrament of Holy Communion in April of 2004.

With an outgoing and bubbly little personality, her interests included: swimming, playing with friends and cousins, going to COSI and amusement parks, drawing/painting, reading, playing on the computer, wearing flip flops, watching PBS cartoons and telling jokes. She adored her teachers, friends, cousins, and the wonderful volunteers and staff members at her hospitals in Columbus, New York City, Philadelphia, and at the Ronald McDonald Houses where she also spent hundreds of nights.

Christi’s participation in numerous clinical trials at Memorial Sloan Kettering Cancer Center in NYC and the Children's Hospital of Philadelphia will help researchers develop more effective treatments for cancer. That contribution to science, along with her steadfast courage and dignity are a legacy of which her family is proud.

Friends and those touched by Christi’s life may call at the Traunero funeral home, 214 Monroe Street, Tiffin, Ohio from 1-7 PM tomorrow (Thursday) and Friday. At 10:00 AM on Saturday, at St. Mary’s Catholic Church, Reverend Joe Szybka will conduct the funeral mass. Following mass, pink and white balloons will be released to celebrate the life of this special little pioneer. A horse drawn carriage will carry Princess Christi’s coffin through the city of Tiffin where, at the end of town, the “Friends of Christi” will provide a final motorcycle escort to the Seneca Memory Gardens where her she will be buried next to her Grandpa Falter. White doves, as symbols of peace, faithfulness, and purity, will be set free at the conclusion of the cemetery service.

Pallbearers will be: Eric Cook ( webmaster), Tim Bowerman (Family Friend) Bob Murray (Dance Unlimited), Dave Conn (Neighbor) Traci Weaver (COSI), Brad Powers (School Principal), Josh Thomas (Cousin) and Gil Laterza (Uncle). Good friends, Tom and Lori Leis of Uncle Dudley’s Catering will provide a luncheon after the cemetery services in the rec room at St. Mary’s.

In leiu of flowers, family and friends have established the Christi Thomas Memorial Fund. The fund is part of the Gillmor Trust, a donor-advised fund and 501(c)(3) Charity. In keeping with Christi's strong personal commitment of living life to the fullest and reaching out to help others along the way, the Christi Thomas Memorial Fund will sponsor activities to celebrate the spirit of Christi. Memorials may be made to the “Christi Thomas Memorial Fund” in care of the Old Fort Banking Company, which will allow the Thomas team to provide activities and services in honor of their precious daughter in the years to come."Christi Thomas Memorial Fund

Tuesday, September 19, 2006

Heaven's Newest Angel - Christi Thomas

Christine Shayna Thomas (“Christi”) May 12, 1997 – September 19, 2006

At 9:00 am, with Shayne and I at her side, Christi took her final breath and gently floated away forever leaving a hole in our hearts. Without a doubt, she’s already been awarded the glitteriest of God’s Angel wings, received a warm welcome from many loved ones, received her library card, and has been assigned to tend to Heaven’s pets. Additionally, I’m certain she’ll also forever watch over and protect her sister and each and every kind soul who has so lovingly touched her life, especially over the past four years. In her 9 short years here on earth, Christi did more than most will ever do in a lengthy lifetime. We were truly touched by an angel. Christi is now finally pain and cancer free - dancing on the stage in Heaven. Mommy, Daddy and little sissy Shayla will anxiously wait to be reunited with her again – in a much better place. Until those glorious days, fly, Christi, fly!!

Our friends, and Christi’s Angel Flight Pilot – Rich will be flying her body back tomorrow. Rich & Andrea Traunero are handling Christi’s Celebration of Life arrangements at their funeral home in Tiffin. The Thomas team requests that memorials be made to the "Christi Thomas Memorial Fund” so that her spirit can live on.

For out-of-town guests who may be interested in lodging:

Hampton Inn Tiffin
2492 S State Route 231, Tiffin, OH
(419) 443-5300

Holiday Inn Express
78 Shaffer Park Drive, Tiffin, Ohio
(419) 443-5100

Quality Inn
1927 S State Route 53, Tiffin, OH
(419) 447-6313

Google Search Results Summary

More of the Same

Dr. Maris was in about 7:30 this morning surprised to see us both "sleeping" on the parent couch asking, "How can you two even fit there much less sleep?" I don't know if real sleep will ever come again. Dr. Maris said, "Christi's spirit is gone, but why her body is still working is puzzling." He did point out that her heart rate had dropped and her urine output had decreased indicating it shouldn't be much longer until her body stops. Shayne pointed out that throughout four straight years of treatment she never had real damage to her liver, kidneys, heart nor hearing so perhaps it was because her body was in such fine shape, relatively speaking. Maris agreed that the more gentle treatments were good for Christi and will probably be the wave of the future to extend kids' lives.

Last night Shayne signed the limited autopsy consent form while I looked away and tried not to throw up. This morning he said it's best that if her body is still working, early this afternoon to go ahead and do that because the freshest sample the better in trying to grow her tumor cells. It will involve A LOT of blood being drawn out of her pelvis and then being shipped out to Dr. Reynolds's lab in Los Angeles. I'm certain I'll need to step out of the room as I've been incredibly queasy the past 24 hours.

Thanks, Eric for updating this blog for me many times in recent days. Our lap top isn't allowing us to post so I've been emailing things to the wonderful "Webby" for help. This morning, Shayne threw me out of the room as I haven't really left for over a week now. Additionally, I knew it was important to have some alone time with Christi too.

Time is Near

Christi had been having shallow breathing about every four seconds yesterday. Dr. Maris was in about 10:30 AM and again about 6:00 PM yesterday taking such time and sharing compassion for us. (I didn’t realize he only treats about 30 patients.) Both times telling us it shouldn’t be much longer. About 2:00 AM her breathing increased to about every 2 seconds and since 4:00 AM it’s been every second. I can’t imagine her body can hold up much longer. I keep waiting for that final breath and for her heart beat to stop. We hope it’s peaceful, but Dr. Maris has warned us that it may not be and we may witness some more horrific episodes before she dies.

Through oceans of tears, we’ve told her how loved and cherished she is and that she’ll always be in our hearts and that the world is a better place because of her. (Dr. Maris told us yesterday that saying these kids touch a lot of lives is a bit cliché, but with Christi’s it so much more than that. How she lived her life really changed so many and brought about such good. He also joked that she was the one always looking like a cancer patient’s sibling out in the playroom, surprising so many that she was terminally ill on the inside.) We’ve lied and told Christi’s it was okay to go and that we’ll be okay and she can show us around Heaven when we get there. We’ve told her we’ll leave this earthly world and be together again sooner than she can imagine.

Dr.Maris said it must be hell waiting for her to die, and he’s right. He also reminded us that he’s probably not going to be successful in establishing a cell line from Christi’s tumor as he only has it work 1/20 of the time. He did say having a “fresh” sample is good. (He also said that if it grows he would be happy to name it the FU NB 2006 cell line for us.)

The past four years have taken a toll on us emotionally, financially and physically, yet I know I could have lived that constant treatment life 40 more years without complaint because I knew how lucky we were to still be in this fight. It breaks my heart to think of a world without her little body in it. She taught us how to live (busy) and how to laugh (often). I feel like a huge part of me is also dying.

Monday, September 18, 2006

Christi is writing her own book

Christi continues to sleep comfortably. Her breathing is slow but rhythmic. She is pale yet not lifeless in her color. We have been in and out of bed with her, talking to her as if she were listening, but, not responding. (this typically happened when her nose was in a book-then she would say "what did you say-I was reading".

She will die with a lengthy "to do" list. I found the list she made for us in Philly when we arrived. It saddened me until I realized that she just set her goals high. We did a lot, just not everything-that is OK. So when I get home and I have to look at 23 unread Hank the Cow Dog books, I need to remind myself that she read 20 of the 43. It still hurts though to think of her being cheated out of the opportunity to finish a book series and so so much more. Everyday she lived to the fullest. This kid always had two or three projects going at once. Secretly, she would stay up until past midnight to read he books. (how am I ever going to handle peering into her room and not have her propped up on her pillows with books surrounding her). Right now she is in the middle of three books here in the hospital room. One that dad is reading to her, one that mom is reading, and one that she bought at the Barnes and Noble. SAD sad sad sad-do I finish that book without her?

Christi loves science (as does Shayla). It would please her greatly if she can live on in an experimental cell line (FU NB 2006). Maris and his team are set to give it a go, although, the success rate is only 1/20. Additional good news came from LA today, our friend Dr. Pat Reynolds had agreed to also attempt to start a NB cell line from Christi's cancer. He admitted that he would do it "with a heavy heart".
It may be an important data point for the scientific community because Christi has seen almost all of the known active agents. Her disease has developed resistance to all of the big guns as well as many experimental. It is not likely that any current NB cell line has seen as many different approaches as has Christi's cancer. She deserves to leave this legacy.

Which reminds me to thank the many of you who have emailed suggestions regarding memorializing Miss Christi. Our ideas are coming together nicely. This is a refuge for me from the brutal reality of our situation. We are trying to preserve the spirit in which she lived so that her beauty, wit, and intellect may never be forgotten.


Dr. Maris just left...

This man is a Saint. A long time ago one of our NB friends asked Shayne if he thought Maris would “stick around” when things weren’t working out and we didn’t know. Well, he has more than “stuck around” he’s been here for us every day – coming in on the weekends even and taking such great care of us. It’s almost as he’s in mourning too.

This morning he said that Christi’s life touched many. He said that he was even receiving emails about Christi. (I couldn’t get over my tears enough to tell him that we’d never give out his email address.)

He stayed with us a long time and told us twice that Christi is already “someplace else”. He said if they’d check he was certain she’d have no brain waves and that she is in a coma. When I asked him if she could hear us he told me, “no.” Although he said that Christi has surprised him many times over the years, he believes she has minutes, hours, possibly days left – but days is most unlikely.

Shayne and I have felt that she has been “gone” for at least a day ourselves. Her last food was two days ago when she woke up and wanted cookies and milk for breakfast. She was stirred from her sleep enough yesterday morning to say, “bathroom” but then she was like a little rag doll with her head literally flapping around and legs no longer strong enough to stand. “Bathroom” her final word, so sad. When did she really depart? We don’t know. Why is her body still hanging on despite the fact we’ve told her it’s time to go? I don’t know. A few days ago I caught a few things she was saying in her dreams: “It was just so hard giving up that heart one. I really liked that one.” (In reference to the bead / keychain things she made for all of the five new girls in her 5th grade class to welcome them to her school.) and “I can spell this one. It’s okay you guys. We’re good.” (She must have been dreaming about a game/competition with her class at school.)

When Shayne asked Dr. Maris how high her LDH (now over 26,000) could go he responded, "no much higher." Then he added, "I don't recall ever seeing an LDH that high." Strangly enough, her hemigloban is still over 10 which puzzles us all. Her platelets down to 27 today so they were transfused and her white count is now down to 2.0 with an anc of a mere 260 - no ability to fight infection. Dr. Maris believes her fever indicates an infection and that it should be a peaceful way to die. I hope so as I've witnessed enough horror in recent weeks. He also thought she looked good on the outside, but this mom has seen too much damage to agree with that. I've learned, "Death is not pretty". Enough said.

So, God, it doesn’t appear you’re listening……you haven’t taken any of my plea bargains of taking my life instead of my daughter’s for years, but I’m going to keep on trying. Dear God, if Christi’s not already with you, she’s on her way. Our amazing little girl loves science centers and amusement parks. She’ll be buried with her COSI and her Cedar Point passes. Would you please make certain you have those things up there? She’ll be shy at fist, but as soon as she gets her courage up she’ll be asking you to expand your library and asking if she can help take care of all the pets.

Still Somehow Fighting

Oh, some of you know this spunky little one quite well and you won’t be surprised…..she’s still hanging on. I don’t know how. Shayne and I have crumbled countless time; yet, Christi – the brave and courageous Warrior Princess continues to make our hearts melt with her presence.

After days of very low heartbeats, yesterday early afternoon, her rate increased to an above normal rate. Her little heart is beating so fast I do not know how she has not yet had a heart attack! Even though they quit taking vital signs days ago, I asked last night to have her temperature taken as she seemed very warm to us. Sure enough, she had (and still has) a 105 degree fever. Because of the “situation” they won’t start antibiotics and she’s not alert enough to take Tylenol. Truly, it doesn’t seem to be bothering her so I refused cold wash cloths as I hate to make her uncomfortable after all the torture she’s been through.

Shayne and I caught winks of sleep here and there throughout the night. We had our ears solely focused on Christi’s shallow breathing promising to wake the other up if something changed. Her lips are so white, her skin is turning “dusky” and her finger nails are becoming darker. We’ve learned these are all “natural” (HA! NOTHING NATURAL ABOUT A LITTLE GIRL DYING!) signs of progression. Sometime during the night she closed her mouth and that raspy “death rattle” sound is now gone as she’s breathing through her nose.

We appreciate having our privacy at this time and hope we haven’t offended anyone by no longer permitting any visitors or taking any phone calls. Yesterday, CHOP Security stopped permitting visitors at our request. We’re just trying to soak in and savor every last second we have left here on earth with our Christi.

To our Rally Across America friends, Tom & Austin, thank you for the smile this morning. Tom’s mom, who works here in Philly, must have somehow passed through security’s block because we found a big pink whale hanging outside our door this morning and we loved it. Thank you.

Sunday, September 17, 2006

Try to Sleep...

Pictures: Baptism, June 1997

First Holy Communion, April 2004

Shayne holds cell phone as Shayla wants to talk with CT.
Angela holds Christi s hand at bedside

"In the absence of miracles an dcures, there is human kindness". (Great quote on that card, Caroline! That really sums it up!)

We've had three times tonight when we thought "this is it". All three have brought us to rivers of tears, all three have found us calmly talking with Christi telling her how much we love her, telling her how wonderful the place she is going will be, telling her she'll always be in our hearts and that we'll be okay with our her and telling her that she's the first in our family to get to meet Jesus. (Christi always likes being "first".) As of this moment, she's still here and I'm typing from her bed where I've been perched most of the day trying to soak in every last sight, smell, and sound of this little girl who, as a result of spending so much intense time together over the past four years, is like a part of Shayne and I. When she soon dies, a huge part of us will also die.

Shayla broke our hearts tonight when she wanted Christi to tell her her username and password to get on to her computer site back home. Christi's so heavily sedated that she has been unresponsive since early this morning when she said, "bathroom" yet couldn't even hold her head up and could only cry in pain and tell us, "I hurt everywhere." Watching her suffer like this is horribly cruel. While a very selfish part of me wants her to stay like this for days, I continue to pray to God to please not let her experience any more pain and please call her Home soon.

The funeral plans are begining to mesh. I just feel that this little Princess is quite deserving of a royal send off! And quite frankly, since there will be no graduation party, wedding or baby shower to help plan - this is it! (Thanks, Kelly, for taking care of the dove release which will be held at the cemetary. Only YOU can know and understand the pain of watching your precious baby's body being destroyed with this evil cancer monster.)

I do not know if she will make it through the night, but I'm going to put my head back and try to catch a few zzzzzzs - if I can.