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 www.ChristiThomas.com to learn more. There, you'll find journals, photos and a lots of other information about this amazing child and her family.

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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: http://www.jlbfigs.com/erin'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


IN LOVING MEMORY OF CHRISTI THOMAS, FOREVER 9

"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?!)

FUNERAL FUNNY:
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 http://www.wtol.com 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: http://www.advertiser-tribune.com/index.asp
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, but....it 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

Kindness

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,
Angela

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: http://www.advertiser-tribune.com/News/articles.asp?articleID=3853

Thursday's Story: http://www.advertiser-tribune.com/News/articles.asp?articleID=3874

Christi's Obituary: http://www.advertiser-tribune.com/obituaries/articles.asp?articleID=3883

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 (www.ChristiThomas.com 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

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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". http://www.christithomas.com/images/1692.jpg
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.

nite
shayne

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.

Nightly update

Tonight when I placed a keepsake heart in Christi's hand she immediately started coughing and gagging. It was a horrible few moments we felt helpless and it felt so wrong to do nothing. We didn't call for help we just comforted her and told her we loved her. She regained control of her breathing and is resting comfortably now. Angela has with the help of some very resourceful CHOP nurses made some plaster casts of Christi's hands tonight. We played the High Schoold musical DVD just in case she was listening.

We ate like kings today. We had Kerschner meatballs for supper Shayla is doing fine. She had a good weekend, according to her, with her friend. When I called tonight the first thing she said was “Can I talk to Christi”. She really wanted to have a rather mundane conversation about some passwords on a Neopets account, yet, it still turned me into a sobbing sack of … Here is the deal, Shayla never has to remember anything because Christi is always there to remember for her. They refer to it as Shayla’s “savings bank”.

Any image that Shayla wants to remember forever she tells Christi to put in her “savings bank”. Since Christi has an extrodianary memory this seemed like a good plan to the girls. Now as I have feared we are starting to see that their lives were so interwined that little Shayla is going to have a piece of her die with Christi. This makes me so incredibly sad.

Dr. Maris said that what keeps him up at night is the concern that "Christi develops an infection and lands in the ICU or a scary event occurs like internal bleeding" His goal has been to lead us to a "soft landing". What keeps me up at night is that I may only remember how Christi died and not how she lived. I want to banish the memory of these past few weeks and only feel and relive the precious nine years that proceeded them.

Lord I pray: that if you are indeed a merciful god then take her tonight.

Shayne

Memory Lane


WONDERFUL!


Trick or Treat



Sisters






Hanging with the Cousins



Paw Paw

15 month Old Christi

My sweet mom at home keeps emailing me pictures of happier days so I'm again sharing another one of my favorite Christi pictures. I think she's about 15 months old here (July 1998).

The foley will make her feel so much better. Those amazing nurses got her all cleaned up and situated and she continues to be painfree. She's remained sedated all day. I just crawled out of bed after spending the past three hours: holding her hand, stroking her face, talking to her, singing to her, napping with her and quite frankly crying my eyes out mourning this huge loss. In so many ways, she is already gone.

Sunday Morning


Christi slept well through the night. She did not actually move from this position. In part it is from the increase in Ativan. Her pulse has dropped to the low 50’s, however, it is strong. Each breath seems to be forced, but, I would not describe it as labored breathing.

The days and nights actually go by very fast. It is more like one long day with a bunch of naps. We choose to keep it very isolated in our room. Christi is leaving us and we want to absorb these final days. In some very sad ways she has already left us. No longer does she walk, or read, or draw. When awake she is a distant shell of her former self. Her eyes lack focus. Conversations, are peppered with narcotic induced hallucinations. So I have resigned myself to the fact that the real Christi has already departed. It is time for her soul and body to catch up. Perhaps today will be a better day...there is always hope right Shayla? One of the lucid things that Christi was able to manage yesterday was this comment about her pain. "If I weren't so civil I would be cursing right now" REALLY I am not making that up!!!She said that…. Honestly, I have no idea were she gets that "civility". Most be from Angela.

Angela is an amazing women with powerful capacity to function under stress. She has marshaled the forces who will lay our sweetie to rest while not missing a moment with her while living. Angela leads a busy and complicated life and when something of this magnitude occurs there are bound to be many professional disruptions. From the very bottom of my heart I want to thank all of you who have helped her along. She does not deserve to have her child stolen and face such deep disruption in her profession life. That is just more than one person should be forced to endure-so again thank you.

Aunts and grandmas please skip this paragraph-too much info:
Medically speaking, the pain is originating from the expansion of the disease in the marrow space. We have been told that bone pain is the worst pain to manage. If the pressure continues there is the possibility of fractures. There is no way to tell what is really going on with her body though. Surprisingly her hemoglobin continues to be in double digits. Many kids expire from inadequate blood supply. With her robust counts it appears that she will go a different route. Maris says that there is an outpost somewhere churning out red blood cells (maybe in her big toe=his words not mine). It is very confounding but the disease is somewhat sinister in preserving its host.

The thought of her vanishing forever is far too depressing. I have taken emotional refuge in trying to establish a proper way to memorialize her. Our ideas are starting to gel and we hope to enlist her supporters help us.

Today we are looking forward to real Italian meatballs and a visit from the Kerschners. There will be more quiet time with Christi and probably another host of frightful decisions such as placement of a foley catheter.

Fresh from the Cabbage Patch

This was the very first photo I ever took of Christi in the hospital. She was just one day old and I wanted to creat "cabbage patch baby" announcements to let our family and friends know this precious little one safely arrived.

Saturday, September 16, 2006

Soup for the Soul


An Innocent Time



As we tumble backwards into this strange abyss, we continue to be amazed at how incredibly selfless people are to an undeserving couple. At noon we had Matzah Ball Soup delivered to our door. The soup is supposed to heal everything even a broken heart-Thank you. For supper we had soup again. Delivered in person by my cousin from Virginia! Lucky for us they showed up because we put them to work on a few errands. Thank you Cheryl! (email us the recipe for the soup or better yet where we can buy it)

Pretty much that is where the good news stops. Christi is increasing pain chased by increasing Morphine and Ativan loads. She is written for a 100mg per hour limit of morphine. The docs assure us there is plenty of room to move up on the drugs. Eventually, if the morphine stops being effective they will “put her under” as in surgical anesthesia. No one can tell us if she will stabilize for a few days at this level or a few hours. Right now we are evaluating her hourly. Dr. Maris was in today. Although he did not have a whole lot to offer medically, he did give us comfort with his presence. He has not tried to distance himself from us or her pain. In fact he seems to intentionally soak in her pain as if storing it to be called upon for later motivation. Although there have been great advances in the care of the NB patients-the medical community will readily admit that they have failed to develop a successful strategy. I hate the thought that there are more kids being diagnosed every week and we aren’t much closer than four years ago to having a cure.

Special thanks to Olivia for the calendar, Angela loved it. Thank you to everyone for your heartfelt posts and emails. We are constantly touched by your ability to reach out to us and even as the good times come to an end. I won’t blame anyone for looking away right before impact. Isabelle in NYC thanks for posting to the site. You are a great big sis!!


Shayla had a sleepover with a friend this weekend. We hear that she was at the SE football game this weekend cheering on the Tigers. Thank you to all who have kept Shayla in your thoughts-she suffers the loss of her sister and the neglect of her parents-Lucky she is blessed with friends and family

Good night.
Shayne

Setback

Pictures: Baby Christi (six weeks / Aug. 1997)

Photos taking yesterday during Christi's "good day"

After 2 ½ - 3 days of not needing to increase her morphine, peace came to a sudden halt at 3:30 AM. Christi woke up many times from then on screaming in horrendous arm pain. She told me that it felt like someone was giving her a shot on a bruise. “I’m sorry, but that’s the only way I know to describe what it feels like.” After 29 mg. of morphine (yikes!) we didn’t stop the pain, but according to Christi, “It’s moving in the right direction now. Thank you.” She had a few cookies and milk for breakfast and I’ve now crawled out of her bed so she can get some rest without me hogging the bed. Shayne should be arriving back from the Ronald House pretty soon.

I’m not certain what this means and if Dr. Maris still feels she’s “stable” enough to give her the low dose MIBG treatment next week. I’m assuming so, but the weekend is far from over. (The low dose MIBG treatment will just be an IV injection that shouldn’t do any harm to her and it can be done outpatient. It’s very different than the high dose double MIBG treatments she received here in the fall of 2003 which made her radioactive and required her to be isolated behind the lead shields, and all of her belongings disposed of as radioactive waste, many platelet transfusions, etc.) Dr. Maris said he will not give her any treatment which will cause her harm or further deteriorate what’s left of her quality of life.

The vaccine, developed and grown from Christi’s own T-cells sent to Houston from CHOP years ago, is “in the freezer”. Logistically, moving Christi to Houston to get her vaccine is not an option due to how fragile her condition is. Although the only children who have received this vaccine that we know about have also received their Angel wings, we were still hoping Texas Children’s would send it to CHOP to have her receive the shot anyway. Since there was great expensive and effort involved in actually getting Christi’s T-cells to grow and to be viable for the vaccine, it seems natural to want to be permitted to get it back. So far, no one has moved on this so getting her vaccine is highly doubtful.


When Shayla made the decision to return home last week she knew that Christi could die while she was at home and that she may never see her alive again. Shayla took a day to make her decision, but then she explained it to me like this: “When we treated at MSKCC for a whole year, it was different. I was in school there and I had friends there. Also, I didn’t have a bunny at home. Now I have responsibility.” I’m glad she was here for ten days to help her understand how very ill her sister is, but I think she made the right decision to return home and to try to get on with her own life. Thanks to all who are taking care of her back home! I miss her very much!

Friday, September 15, 2006

Truly Loved

Baby Christi, Dec. 1997 - 7 months

I continue to plan Christi’s “Celebration of Life” and Shayne continues to rack his brain with treatment options that might possibly be viable. (He continues to beat himself up with, “Why am I letting her down? Why can’t I figure this out?”) Even as much as I tell him he’s in “desperate parent mode” as we’ve witnessed this with our cancer friends time and time again, I do admit I’d glad he’s doing it. When she’s feeling well for a time, it’s hard not to believe that she still can’t yet put up a good fight. Dr. Maris did tell us days ago, “Her body says it’s time to stop.” I agree she looks horrible at times- so pale and weak, but other times she doesn’t look so bad. Again today’s blood counts were great: hgb. 11.4, platelets 70 (to be transfused again tomorrow) white count 6.4 with an ANC of 5,550. Amazing for a terminal kid, eh?! I guess that’s what’s hard. If she had a hemoglobin of 7.8 we could rationally say, “Ok, we’ll stop the blood transfusions and just let her pass,” but it has been 11.4-13.2 for weeks! It’s hard and we want to life with “no regrets” even though we’ve said many times that will never be possible. So while I received word from the funeral home back home that her gown arrived from Los Angeles and it is gorgeous, I also slipped into “desperate parent mode” asked Dr. Maris, “What about low dose MIBG therapy?"

Dr. Maris sort of laughed (Well as much as “Mr. Serious” can laugh) and said, “That was scheduled for next week and recently cancelled.” He paused, then responded, “There’s no reason that she couldn’t get it next week though.” He said that just because she’s had two “good” days doesn’t mean that will continue. He does believe she’s stable enough now that we could try to transfer her home to hospice next week, but he’s also considering some mild anti-cancer treatments (low dose VP-16, perhaps) depending on how she does over the weekend. It wouldn’t be to cure her, but to try to continue this “decent’ quality of life she’s had the past two days and to give us more precious time with our beloved daughter that we just don’t want to part with.

Late last night Eric uploaded some pics which you can see by scrolling down the blog. I particularly love the two of her hugging Shayne, despite how pale and weak she looks. This morning she made me laugh and giggle many times while she sat on my lap while the wonderful nurse changed her bed. Earlier, while sitting on the potty, I laughed so hard I thought I was going to let go of supporting her. After I told her, “I love you, honey, “ she said, “Ah, mommy loves me. Even here in my natural habitat.” What a card! She’s lost some spark and dazzle, but definitely not her humor!

Shayla continues with this “anger” mood it seems. This morning when I called her before school to check on her she seemed to be upset with the Principal. “It’s really foggy and school isn’t even delayed!” She’ll spend the weekend with her good friend Amber and I know she’ll be well taken care of and happy, especially since I won’t keep calling and checking in on her.

M
any have emailed me that the prayer website that has been set up for Christi is quite lovely. Because “myspace” websites are all blocked from the hospital, we’ve yet to see it but I will when we return home. Thanks, Jennifer www.myspace.com/sayaprayerforchristi Here’s thanking you all for lifting us up in prayer and here’s wishing you all a grand weekend! Enjoy!

Morning Update

Christi woke up in a great mood and generally pain free. At this time she has not shown any interest in arts or crafts nor having us read to her much. This is so unlike her. Laughs and giggles accompany the PBS shows that she has watched since birth. Two bowls of Coco Puffs and three cartons of milk satisfied her for breakfast. There has been no curveballs for 24 hours now. If we knew that she wouldn't take an immediate turn for the worse we would head for home to do hospice care. Christi is being taken great care of by the wonderful CHOP nurses and we want nothing but the best continuity of care. The challenge of course is that no one has a crystal ball which leaves us guessing what to do next. Do we take her home for extended hospice care? It would be wrong to spend several months here if all days were like yesterday.

So we will plod along day by day for now and try not to get too high or too low. I have not given up on Christi yet, she is a fighter and may just write her own book until the end. Constantly, I have been reconsidering our decision to discontinue anti-cancer therapy. We had started thinking about taking her to Texas to get her cancer vaccine. It would have involved a ten day stay in Houston so ultimately we decided the risk outweighed the potential upside. Another option was irinotecan and although she has seen it before, I think she has always responded to that drug. We have even done that with home health care. Other options are pretty limited, although some other ideas still exist. Right now I am letting her little body give me clues as to what the ultimate course of action should be..,..

Shayne

Thursday, September 14, 2006

Evening Update

Well, we were ready to “write her off” last night, but today was a much different day. Praise God! I know it doesn’t change a thing, but I’m happy I could converse with her a bit, even if she is “loopy”. She was awake for about an hour this morning and again was awake for about two hours this afternoon. She ate very well today: bread stick, peanut butter and jelly sandwich, strawberries and bread knots. Currently, Shayne is reading “Danny Champion of the World” to her.

She was very lovely today with lots of hugs and kisses for everyone. Dr. Maris said he’d stop back tomorrow. He was pleased she was feeling well and was alert today. I think adding in the Atavin was a good call. It’s at a low dose and is to help calm her, reduce fear and make her less anxious. I think it’s working! Her heartbeat and her breathing continue to both be slower, but that is to be expected right now. For the most part, she is pain free.

I'm verry surprised that none of her hair has fallen out from the eight days of radiation. The staff at radiation told me it would fall out by Friday and so far nothing. I’m quite thankful about that. No need to further humiliate her in my mind. She’s been through enough. Let’s give her peace and dignity now.

I still break down realizing she will not be able to return to school, one of her favorite places in the world! She was so excited about starting the flute in band this year. Last week her dance classes were to start back up as were her religion classes, piano and Girl Scouts. She talked about wanting to be on the basketball and soccer teams. This disease is relentless, taking so much away from innocent children. Next week will be her class’s field trip to Put in Bay Island, but she will not be there. Just two short weeks ago I somehow thought that she’d be able to go back to school – maybe in a wheel chair and maybe not for a full day, but still I thought she’d somehow be there. This is heartbreaking.

Shayla spoke with me last night, but did tell me that I didn’t need to call and check on her two times per day. Tonight she called me to make certain that I didn’t give her old Pokemon shirt she grew out of to “the poor people” (which I didn’t – yet) and that I didn’t throw away her old pink flip flops (which I did). That earned me a screaming, “Mom!! I wanted to keep those!!” and a click of the phone. Well, at least it made Christi giggle about Shayla, our little packrat always wanting to keep everything.

Baby Christi

Baby Christi (Fall 1997)

Still With Us

Baby Christi, Fall 1997

When her breathing slowed last night, we didn’t think she’d make it through the night - but she’s still here sleeping beside me as I type this update! Shayne spent a lot of the night on his knees beside her bed crying his eyes out. We watch each rise and fall of her chest and wondered if that breath will be her last, anxiously awaiting her chest to go up again. I again slept in Christi’s bed (have only been crawling out to use the bathroom and then to hop right back in) trying my best not to bump her and trying my best to actually get in some sleep. Again, I wasn’t so successful. Last night Shayne packed up much of this hospital room, where we’ve spent the past 12 days and I made ink prints of her thumb with hopes that Jeffrey’s Jewelry will be able to make her thumbprint into a necklace for me. About 10 PM we heard, “Bathroom!” so we quickly got her to the little make-shift potty beside her bed. While sitting there Shayne asked, “Can daddy have a hug?” You can see the answer. This amazing little pioneer is still so tender, gentle and loving. One of her many nurses said last night, “I’ve never seen a more polite child. She keeps saying sorry.”

About a week ago during one of our “serious talks” with Dr. Maris out in the hallway, Shayne asked him how successful he is in getting new cell lines to grow and would he like to try to create a cell line from Christi. Dr. Maris looked down and paused for the longest time. Finally he answered, “I can’t believe you just asked me that. No parent has ever asked me that. You have just been dealt the lowest blow a parent could ever be hit with and you want to try to help science.” It just seemed natural to us that if Christi died here, Dr. Maris should be able to autopsy her to hopefully get her particular tumor cell line to grow and to try to figure out how to kill this damn beast since all efforts have been unsuccessful thus far. Dr. Maris said that he’s only successful in establishing a cell line 1/20 of the time, but he would be honored to try and since he said he failed Christi in curing her he’d like to work with her particular tumor cells to see what could possibly be done to kill them and help other children. Last night we asked him how long he could wait before he’d need to do his work and responded, “a couple of hours.”

Most of our bags are all packed up and are sitting by the door as we know we’ll soon say goodbye to Christi’s lifeless body, carry them down to the van in the parking garage and begin our ten hour drive home, alone. It’s going to be hard, but we know we’ve got a grand Celebration of Life to take part in. Yesterday I: selected her coffin, was happy to learn that horses had been found which can pull the horse drawn carriage in which her coffin will slide, prayed many times to my father to be waiting at Heaven’s gates to give her a horsy ride and to let his body buried back at the cemetery know it was soon to have company. Additionally, I ordered a stunning boutique / pageant style white gown trimmed in pink which was shipped from California yesterday. Won’t Christi make a grand entrance as she returns to God’s kingdom?! I’m trying to be brave and strong, yet I’m really crumbling and absolutely devastated by our loss and cannot even fathom how we will go on with out this most amazing princess who so lovingly graced our lives the past nine years.

Top 10

Christi just sat up and snuggled into the chair with me to watch cartoons for about an hour. She ate Coco Pebbles and two yogurts. For the most part she was her charming and witty self-just weak. Her pain is under control and when she rests she is comfortable. This can all change very quickly or can linger like this for days or weeks-we just don't know.

For those of you who mistake me for a good and compassionate father I have included the following top ten list to change your perception. For those who know better you won't be surprised (right Aunt V?)


Shayne


Top ten insensitive things Christi's Dad said this week.

When asked how many cats she had Christi replied "Two" and I added
10) "many"

9) I'm going to give these stuffed animals to gypsies

When Christi was sitting on the toilet and decided to blow her nose.
8) You're confused and wiping the wrong end.

Waiting for Angela to come read to her at radiation
7) Your mamma is sooo big....she's on both sides of the family (see May's Blog)

When Christi was on the stretcher going to radiation
6) She'll be fine going down the ramp by herself .......it will be the sharp turn at the bottom the gets her.

When the elevator stopped on the wrong floor and we started pushing Christi out the door....
5) Floor two! this is where you get spade and nutered (Christi actually laughed at that one)

4) I am going to invent shock collars for the nurses that are triggered when the IV pump alarms. ( I said these were insensitive)

When the Chief Operating Officer of CHOP asked if their was anything they could do..
3) Can you get Maris a better parking spot?

When planning for the perpetuation of Christi's cancer for a new cell line used in research, I came up with this name..
2) FU NB 2006

1) Are you gonna eat that?

Wednesday, September 13, 2006

Heaven Bound

It does not appear that we have much time left with Christi. I’ve spent the last several hours snuggled beside her in her hospital bed here at CHOP (Children’s Hospital of Philadelphia) trying to soak in every last memory and trying comprehend this senseless nightmare which is robbing us of our beautiful daughter. About 7:00 PM her breathing changed. She’s now breathing very, very slowly, but she appears to be comfortable. It looks like her little body is slowly shutting down. Without a doubt, she knows she’s loved! Without a doubt, she gave one hell of a fight!

Dying with Dignity

Pictures: Angela & Christi (April 2006)

Baby Christi (1997)


What a difference a day makes. The (second) IV continued to cause Christi pain and it wasn’t working the best in her left hand either; therefore, I asked to have it removed. Well, with very low platelets this caused “a fountain” to put it mildly and a lot of rushing with these amazing nurses. Finally, after that scare, the bleeding stopped.

Christi continued to be very uncomfortable throughout the night. She received a platelet transfusion about 6 AM and that’s when we learned her LDH was even higher (17,288). After assisting with Christi’s clumsy body and getting her back to bed after using the restroom I pointed out to Shayne and the nurses that her eyes looked exactly as they did before she had her seizures Friday night and her motions and behavior were the same too. Sure enough, she seized. I’m so sorry Shayne had to witness that as it is a horrid and helpless feeling to watch your child shake uncontrollably right before your very eyes.


The LDH and the seizure led Shayne and I to the conclusion to ditch the radiation (torture) scheduled for today and to let her die with dignity. Dr. Maris was in this morning to again patiently talk with us about end of life issues and to remind us that no parent could live through a greater hell. He believes it will be sooner rather than later.


Shayne and I continue to cry oceans of tears. I never expected it to hurt this bad – and yet I have learned that the real pain hits 4-6 months after the child’s death when others expect you to go on with your life even though life will never be the same. I just love and adore this sweetheart who because of the circumstances became my best friend since we spent so much time together. As I sit here beside her bed, I look at her painted fingernails and remember just weeks ago when we sat on the floor painting each other's nails.


We will forever be grateful to all who have helped us over the past four years. We are truly unworthy. We consider ourselves richly blessed. Our prayer request is for Christi’s precious little soul and that this little child of God has a peaceful transition to Heaven.

Late Night Thoughts

As I sit here in this dark hospital room, contemplating Christi's fate, I am awed by own fear of mortality. Selfishly, I want to keep Christi with us for longer actually forever. When is it time to let her go? Why can't I convince myself that she is going to a better place? Perhaps my ego is too fragile to accept the fact that someone else may have made a better home for her on the "other side" Many of us pass through these shadowy periods with loved ones and it is never easy. I do not feel special in this regard. Although I know other parents have passed through here it still challenges my very being as if I am the first to experience this agony.

Each new pain, every increase in morphine sits heavy on my chest. Her cries of pain activate muscles in the center of my back which sends signals to my brain to "fight". Bar fight instincts say "If you're going down then.go down swinging". It's not until the quieter moments that the fight instinct gives way to rational thought. A braver response is to tip your executioner and meet your fate with dignity. Here, my friends, is the paradox. If we nobly accept this circumstance we have forsaken the weakest among us-a defenseless child. Each hug reminds me that she believes with her whole heart that I will do whatever it takes to make her well, period. As of yet I have not been able to reconcile the two.

Shayne

Tuesday, September 12, 2006

Today's Radiation

I'm struggling with Blogger tonight and Eric's without Internet. Here's a pic which should go with my entry regarding today's Christi update.

Giggles



Once again Christi’s morphine has been increased. This has helped with her pain; however, now she’s downright “goofy”. “I’m just having a giggly kind of day,” she said early this morning. Her emotions have been high today, going from extreme highs to extreme lows. Overall, she had her best day in the past 14 days!! She actually sat up in a chair and played a computer game for a while today. Although not without pain, she was awake for about 6 hours today. Additionally, she ate more today than in the past 14 days combined (popcorn, Chinese food, cereal, strawberries, rice krispie square and orange juice).

During radiation she’s decided I should read a book over the intercom to her instead of sing. (Hmmm? Should my feelings be hurt? Hee hee.) The three of us are really enjoying the book we started today- “Flush” by Carl H. (the author of “Hoot”). Tomorrow will be her last day of radiation.



This morning I called to check in on Shayla before she left for school. She’s doing fine, but refused to talk with me. When Shayne called tonight, he experienced the same treatment. This all must be terribly difficult on her; I know it is for us. Regardless, Shayla is back at school, gymnastics and dance class. Tomorrow starts back to religion classes.

Today I finally pushed Shayne out of this hospital room to go for a run. He ran down to the art museum to see where “Rocky” has been returned. We told our little advocate, Christi, that she helped get him back. Now – we just need to get Pluto back!

Her blood counts were not drawn by mistake this morning. Tomorrow’s LDH will be instrumental in decision making. Our prayer request is for a lowered LDH. I will assume that she will need yet another platelet transfusion too.

Monday, September 11, 2006

4th Anniversary

It’s hard to believe that today marks the 4th anniversary of Christi’s diagnosis of stage 4 neuroblastoma. 1,460 days and nights filled with constant fear, worry, and hope. Additionally, 1,460 days spent trying to “seize the day”, “live life to the fullest”, and “make a difference” all the while coming to a new understanding that “God’s people are good.” Thank you for holding our hands during the past 1,460 days and for loving Christi like one of your own! Your reward in Heaven will be great!

Days ago Shayne asked for a priest and he was told that we couldn’t get a priest to come to the hospital but they could send a lay minister to give us Holy Communion. That was fine, but not what we felt was needed for Christi according to our Catholic faith and customs. Yesterday, when Sylvia drove Holy Communion 1 ½ hours down to us – not realizing we received it earlier, Shayne told her what had happened. Without hours Sylvia had a priest come and give that special blessing over Christi. (And even though we were very nervous how it may be presented and what may be heard by her, Father Steve was FABULOUS! So gentle, loving and kind talking about taking Jesus’ hand and following Jesus, etc. Nothing scary or inappropriate at all.)

Yesterday she needed her morphine increased due to breakthrough pain. That happened again this morning. After that she had a wonderful day – her best in over a week!! She was awake (and sometimes witty and happy) for five straight hours!! She ate cereal, watched PBS cartoons, talked with us, got up and used the real bathroom, and let us read to her. Her radiation treatment (the high dose “boost” directly to the tumor in her skull protruding down to her brain) was scheduled for 11 AM so those amazing nurses and nurses’ aids wheeled her down in her stretcher to the basement of the Hospital of the University of Pennsylvania, next door from CHOP. We were told there would be a 30 minute delay. Normally not a problem, however Christi was now feeling pretty well and we had no entertainment! Thankfully, Shayne had our Barnes & Noble membership card and a B & N gift card Christi received so he took off running (literally, you know Shayne and what he does for his daughters) to the bookstore where he bought the next Judy Moody book Christi was anxious to read. I’m so glad he did because the 30 minute delay turned out to be a 2 ½ hour delay and that new book is now history. (We’ll read it to Shayla upon our return home. That series is so funny the girls have been loving the books!) Other than having her face bolted down to a board for over 20 minutes today, radiation wasn’t so bad. Today they finished her final leg treatment and she has two days left of the “boost” to her skull tumor.

Upon our return we were greeted by Dr. Maris. He felt that her increased LDH (now an unbelievable 13,641) has maybe stabilized and because it wasn’t any worse he felt we should continue with the radiation and possibly give her more dox (low dose IV chemo) on Wednesday. The LDH will be repeated on Wednesday to make that decision. He didn’t feel a CT scan so early after radiation would tell us anything so it wasn’t conducted. Of course he again stated that short of a real miracle, there is no medical miracle out there and the inevitable will come. He was very pleased to see that she’s made improvements over the past two days and that she’s pain free now most of the time. He said that how she does over the next couple of days is going to be instrumental in what comes next.

About thirty minutes after he left, Christi broke into hysterical screams of pain. It had NEVER been THAT bad thus far. “My head, my head, my head!!!” Her morphine was quickly increased, as was her push level. Additionally, a rescue dose was given and after an hour of horrendous pain she calmed down and is now still sleeping from it. We’re hoping and praying it was just from the intense blast of radiation that was given directly to that one spot today, but who knows.

Despite it all, she remains so pleasant. Even when something is done to bother her (her port cords get stepped on while we’re moving her, someone bumps her sore leg, etc.) she’s oh so pleasant. “I know you didn’t mean to hurt me, but please try to be more careful next time.” “I know you are trying to understand me, but please…..” At one point tonight, during the huge headache, she said, “I’m sorry but I’m getting a little bit ticked off here!” Then she apologized profusely as Shayne and I looked at each other and tried so hard not to laugh. (“Ticked off” is considered a bad word in our home so she really went out on a limb there and it proved to us how bad she was hurting!)

Shayla Update: We understand Shayla is back with Nee Nee and had her first night back to gymnastics. Tomorrow she will be back in school. My mother said:

Shayla loved her flight! She got off chatting happily with several young ladies. One said, "She is really precious." She said she got to pick her seat and she was in first class. I asked, “Was the seat really big?” She said "OH-YES" Sounds like she had 3 snacks and something to drink. She said the lady sitting beside her was real nice, but she didn't talk much. (Suppose she even had a chance?) She chatted very happily all the way home, but could hardly wait to get home and get out to that bunny cage. Good thing Joan wasn't standing in her way. Thanks for asking us to pick her up; I know that had to be really hard. Love, Mom

Well, I’m not about to burst Shayla’s bubble, but she flew Southwest and there is NO FIRST CLASS with Southwest Airlines and to her little bum bum any airplane seat would be big, but that was nice they let her sit in the first row – exactly where she told me she wanted to be. And she’ll never know, but Christi was saying the funniest things today when I asked her how she thought Shayla was doing on that airplane all alone. Christi said, “You know Shayla, she’ll tell the flight attendant, ‘Mom said I should order water, but I’d really like a Pepsi. This snack is really good. May I have seconds?’ ‘Do you think she took toilet paper from the bathroom and vandalized the airplane running up and down the aisles tossing it?’ What a hoot Christi was today dreaming up schemes Shayla may have tried to employ.

FUNNY CHRISTI MOMENT: A few days ago I was sitting beside a sound asleep Christi when the team of doctors came in for rounds. (Now because of the VRE virus up here, which has us all in isolation, playroom closed entire month of Sept., etc. all six of them were wearing yellow disposable gowns- pretty intimidating.) They woke her up and said, “How do you feel?” Without missing a beat she said, “Well, it looks like I have a captive audience so I’ll take a minute to think about your question.”

She's Off!!!!!

Photo Captions: Shayla says goodbye to Christi.
The "unaccompanied minor " at the airport

Wow, that was much harder than I ever anticipated. The Angel Shayne and I are convinced sent directly from Heaven above (Tim Grant) picked Shayla and I up outside the Ronald House gates before 7 AM and zipped us off to Philadelphia International - the world's 9th busiest airport.(Yes, flying on 9/11 - don't exactly see the Mother of the Year certificate being delivered to me any day soon.) I singed many papers including one which informed me that if no one was there to pick her up in Columbus this morning, they'd call Children's Protective Services. I insisted that the only problem would be that there would be too many people waiting in Ohio to greet Shayla. While waiting, she became very clingy so we snuggled and talked until it was time for her to board.

As she was escorted out of my sight, I crumbled into a chair and sobbed until they informed me that her plane was in the air and that I could leave. This is just so hard. (Thanks to Tim for then safely delivering me right back to CHOP where Christi is peacefully sleeping as I type from her bedside.) My mom and Joe are already waiting at the gate in Columbus to welcomee Shayla home.

Prayer Vigil:
We also received the follwoing from a faithful Christi supporter. See her kind message below, and thank you Jennifer & Felicia!

pic caption: Father Steve blesses Christi and gives her a special prayer.

Hello...

I, along with another girl named Felicia, have created a MySpace page for Christi. In just one day this page has 252 people praying for Christi...and it is still growing. Your little girl is amazing!! So, I decided to do something special.

At 12:00 noon and 8:00pm there will be a prayer vigil for your sweetie. Everyone who does this, will stop for a moment at 12:00 & 8:00 to say a special prayer for Christi, on her 4 year diagnosis anniversary. We, for sure, are praying without ceasing!

Just thought I'd let you know. The myspace is www.myspace.com/sayaprayerforchristi

Love you!
Jennifer

Sunday, September 10, 2006

Evening Update (and pics)


Angela takes Holy Communion.



Dad gives VIATICUM





Thanks, Kerschners! Shayla said she had "more than fun!"









Yesterday Shayne asked to speak with a priest so today they sent someone to bring us Holy Communion. (Little did we know sweet Sylvia would drive down from Allentown to bring it to us later, oops. She's soooooooo sweet!!) While I was off reading with Shayla for about an hour, Sylvia helped Shayne get Christi into the shower. That was a big accomplishment. She must feel better now. Today she improved compared to yesterday and that makes us all feel calmer. We're praying like crazy for a lower LDH and confirmation on a CT scan tomorrow.

Shayla











Our deepest thanks to Sharyn and Dave Kerschner for taking care of Shayla the past two days. As you can tell from the pics, she had a great time (Aquarium, the Shore, Dog and more). It's going to be hard to send her home tomorrow. (Did I mention tomorrow is 9/11?)

Yesterday Dr. Maris said it's too early to begin talk about trying to transition Christi home. Her case is so complex and what had been changing by the day suddenly turned to changing by the hour and now by the minute.

Tomorrow we'll see what her CT scan looks like. If the radiation hasn't done anything to hault the rapid disease progression we will not continue with the skull treatments. We'll also take a look at her LDH and her pain (which sadly continues). Did I mention how much hate this disease and how much she is suffering?!

"Funny" moments...

There aren’t many pleasant memories being made right now. It is mostly just tough stuff. Christi continues to be sweet and witty when she is awake. Earlier today we got her up to go the bathroom and through the hustle and commotion she/we ripped out the IV in her hand. We had blood dripping on the floor and a heavily sedated Christi slumped on the toilet. That was quite a lot of drama. Once we got the bleeding stopped we stood Christi up so Angela could wipe her real quick. When this happened Christi’s eyes opened wide and she said “Hey you sneak wiped me”. Cracked us up.

Another humorous moment occurred at radiation the other day. Since she can no longer really support her own weight we have begun physically moving her around. We were maneuvering her from the stretcher to the table. I was attempting to cradle her in my arms to slide her across the table so I said “Sweetie, put your hands around my neck so I can lift you.” So she put her hands on my neck and acted like she was choking me. Cracked up everyone in the room.


Shortly after midnight tonight we were giving her a bolus of morphine in order to control some breakthrough pain. As the pain subsided she drifted into a semi conscious almost sleep. She started talking to me about some strange things that I couldn’t really understand. When I answered, she sort of snapped out of it and said she was dreaming. Concerned about her mental well being I inquired about what she was dreaming. “Oh you know.. books, lots of books” she murmured. “You’re a lot like Belle with your books aren’t you?” was my comeback. She smiled and nodded. It was then that it dawned on me that this was a warped version of Beauty and the Beast. Where we instead watch the petals fall from the rose for Belle. Beast does not succumb to compassion, love or prayer, but, continues with its sinister behavior. The Disney version is better I think.


-Shayne

Saturday, September 09, 2006

Flat Tire







When Shayne called me this morning from the Ronald House he said that the girls had received some packages and should he bring them over? I responded, “Yes” and he responded he’d use Christi big blue jogging stroller to get them to us since he walked back to Ronald last night and our van’s still here in the CHOP parking garage. Shortly before arriving at CHOP, the stroller- which has been with us throughout the past four years got a flat tire. How about that for symbolism?

Dr. Maris called early to check on Christi. He had not been notified about her seizures. He told me he’d be in during the afternoon sometime- and he was. (So sweet as we were certain it was more just to bring comfort to Shayne and I so that we'd know we are not alone in terms of medical professionals that know this situation too well.) I did find comfort in knowing that a level was low which is what caused the seizure. (We did not give her the oral anti-seizure meds for two days.) He explained that there is so much going on with her brain right now: tumor, radiation, etc. When the brain gets out of function like that, that's how it reacts. He also told me she never knew it happened which gave me comfort. We have some real tough talks coming up Monday morning, but we'll continue to pray for guidance, strength and wisdom until that time.

With the biggest of decisions most likely to come on Monday morning, Shayne told me I could do whatever I was comfortable with, but to consider the fact that Christi may die during the 24 hours while I was away and was I ok with that. Additionally, if I was unavailable by cell phone would I really want him to make the big decision without my input. I decided not so I called the airlines and cancelled my flight and listed Shayla as an unaccompanied minor. (Yes, 24 hours ago I specifically told her, “Honey, I would never put you on an airplane to fly home by yourself.” Yes, all that just went out with the bathwater.) Seriously, we know she will be fine or we wouldn’t do it. We don’t feel sorry for Shayla – just the person sitting next to her (smile). I will be permitted to take her through security and to wait with her during boarding until a flight attendant comes and walks her to the plane. I must remain in the boarding area until the flight is in the air. On the other end, a pass will be given to get that special pick up person through security and down to wait for Shayla’s flight at the gate. Shayla is so independent and brave she’ll be fine. (Shayne and I have joked that Christi could never do this, but Shayla – no problem!) I actually got a little smile out of Christi today when I said, “I better have a little talk with Shayla about appropriate airplane behavior. Otherwise she may try to get into the cockpit and ask if she can try to fly the plane.”

Christi spent the entire day sleeping. She woke up about five different occasions to use the potty. Sometimes we were able to get her there in time…..sometimes not. She is really “out of it” so we must unplug her IV pole, take care of all of her tubes, hit her pain med button, unfasten all of the cushions around her bed, etc. She’s very unsteady and in pain so Shayne lifts her, even though it hurts. She did have a “witty moment” once after she was finished and Shayne picked her up. After I cleaned her with a washcloth instead of tissue we heard, “Oh, my butt doesn’t very much care for that, Mom.” (What a hoot!) Last night as I sat beside her bed reading she sweetly said, “You’re a good mom sitting beside your kid’s hospital bed. I mean, I had my doubts, but really you are a good mom,” then she giggled before drifting off. So funny!

The IV which was placed during the night fell out during one of our potty breaks. She had to get another one, but for the most part handled it pretty well. Now that she’s out of pain, she’s really “out of it”. Dr. Maris said that could be attributed to the disease, the large doses of Atavan (sp.?) she received to stop the seizures or the large loading dose of the anti-seizure medication that is now going IV. He said that the IV was fine for now, but it won’t be able to stay for many days before an alternative will have to be found.

Terrifying














The blood ended up taking four hours to drip into Chrsiti’s veins late last night; therefore, she was in unbelievable pain. About half way through her transfusion Shayne and I asked that it be stopped so that she could get a rescue dose of her morphine which they did and then continued with her transfusion. She was hurting so bad so when Shayne asked if they could just put in an IV so that next time she needed blood she could also have the narcotics she said yes. Knowing how feisty little Christi used to fight every IV like a champion prize fighter it broke my heart.

Getting her to take oral pills has become increasingly difficult. Yesterday we couldn’t get her 2PM anti-seizure pill in her. After she threw up about 10:30 last night we decided not to even try the 11 PM dosage, never really realizing the consequences perhaps. Shayne decided to walk back to the Ronald House before midnight and we thought we were in for a quiet night.

I woke up to Christi screaming about 1:30 AM and I helped her get to the bathroom. Her eyes looked so odd with one going one direction and the other looking at me. Her pupils were very small, but I attributed it to her lack of sleep (or mine) or possibly because she’s so “high” as the nurses have said so I didn’t tell the nurses. At one point she was so dazed I clapped my hands together to try to get her attention to get her to move back to her bed, no luck.

At 3:15 AM I woke up to Christi again screaming in pain, but then as I looked at her little body, I could see her shaking and trembling so my mind raced, ‘That must be a seizure.” Not able to find the nurses’ call button in her bed I ran out in the hall and down to the nurses’ station to get help. Christi just shook and shook with her beautiful little blue eyes rolled off to one side. After it ended she drifted off in a hard sleep and the nurses’ told me her oxygen level was fine and that she can hear during a seizure but there’s nothing to do but be with her and make certain she doesn’t choke. (These nurses are Angels helping us through our darkest of days.) I text messaged Shayne and tried to get back to sleep.

An hour went by before she had a second seizure. It was absolutely terrifying to watch her experience that even though other Angel parents have warned me that this can happen when your child’s brain is swollen and pushed about inside the skull.

She just had an IV placed and she really could have cared less. She just let them do it. It was the same way when she said she had to go to the bathroom, but didn’t make it. The IV will keep her pain meds and she can also now get her seizure meds and other meds by IV. (They interfered with the morphine so that’s why she had been getting it by pill form. Pills that she can no longer get up and swallow.) Hopefully, Shayne will be walking over here very soon. I do hope he got a bit of sleep last night since he hasn’t sleep well in weeks.

Friday, September 08, 2006

Pain Continues

At 4 AM I couldn’t sleep any more so I took a quick shower, woke Shayla up and soon we were out of the Ronald House and driving over here to the hospital. I crawled in bed with Christi and dozed off and on until her left leg pain started keeping her awake and causing her to cry out with horrible pain. She continues to amaze many of us as she’s just so sweet and polite. She’s continually saying, “Sorry. I didn’t mean to cry that loud,” “I’m sorry Mom, you know I love you, but I thought you were going to bump my leg or something,” "Dad, there are tims in the past and there will be times ahead when I'll blame you, but I don't really. It's just because I'm uncomfortable." etc. etc. A true sweetheart has graced my life!

Speaking of graces, Mrs. Grant stopped by and brought us dinner today as did Mrs. Kershner!! (So much for my 15 pound weight loss over the past nine weeks!) Those ladies are too thoughtful! Shayla left with Mrs. Kershner and is now spending the night at Shayne’s boss’s brother’s home in New Jersey. (She stayed with them before and was looking forward to leaving the hospital scene. She has been the most remarkable child throughout all of this! My heart is breaking for her. I love her so much and cannot even imagine what she's going through!)

Today I purchased flights to get Shayla back home. (We wanted her to be back in school on Monday, but the Sunday night flights were very expensive.) She thought she was flying by herself-and was perfectly fine with that; however, I told her I would never put her on a plane by herself and that I would be flying home with her early Monday morning, getting some things we need from home (like bills) and then flying back here early Tuesday morning. Then she’ll be back in Grandma Nee Nee’s care. (Denise and Tim Bowerman - thanks for the pic and video of Shayla’s bunny to help her know “Swiffer” is ok! She’s so worried about her bunny. That was so thoughtful! Technology, wow!)

Christi’s blood pressure continues to be high while her heart rate continues to be low. Additionally, today her hgb. was just 8.2 so a blood transfusion will begin at any time now. Most likely that's due to all of the radiation treatments she's endured this week. (Unfortunately, they’ll have to stop her continuous morphine drip – which was upped again today. She’s so “anti IV” that we agreed to stop the pain meds for three + hours during the transfusion so that she wouldn’t have to get the IV in her arm. I wish she had a double port in her chest, but she doesn’t.)

With her left leg continuing to cause her a lot of pain, I was glad radiation took place. Her final session of whole brain radiation was also today. (Monday will be the additional “boost” just to the tumor and that will continue through Wednesday.) With Christi’s amazing little mind, that has been like a huge punch in the stomach with each “treatment”. I’ll never forget the school psychologist trying to communicate to me the unbelievably high IQ Christi has and her telling me, “Never in my 25 years have I ever tested anyone with a higher IQ”. It took having her explain to Shayne that a 161 IQ is four standard deviations above the norm to help him learn how remarkable Christi’s little mind was. It was explained to me that having her IQ would be only one or two people in our entire county's population. Have we already seen loss of cognitive function? It’s hard to say. She’s been saying goofy stuff as she drifts out and in of sleep, which is most likely due to all of the heavy narcotics and other meds she’s on, but every time she said, “I don’t know. I forget,” I get a lump in my throat. I just can’t help but feel like here was an incredibly gifted individual who could possibly find the cure for cancer, but she’s not going to get the chance. What a devil of a disease!

Despite the fact she's in a lot of pain and feeling miserable she still has her wit. Today Shayne started and I finished the 2nd Judy Moody book and I read her a stack of picture books which she enjoyed. It's so sad that our avid reader isn't able to read her books to herself any more.

She had a very funny moment while trying to carefully switch from her stretcher over to the radation table this afternoon. She's in a lot of pain and has to crawl over. It was taking her a great deal of effort and time and she was trying to mask her pain while many adults hovered over her. At one point she just froze......then looked up at everyone and said......What?! That was just my dramatic pause! and gave a sweet little giggle.

This afternoon she drifted in and out of sleep while talking with her good friend, Josh, from back home. Shayne and I were so pleased to hear her say with a pleasant little smile, "I'm just thinking about my Disney cruise." Definitely great memories for all of us!

A quote my Principal uses goes something like this: You'll never stand so tall as when you bend down to help a child. Please accept our thanks to all of you for bending down and helping this child- and as a result our whole family as we try to get through this ordeal one day at a time. She's currently munching on a cookie that was delivered to her with love today. Thank you!

Thursday, September 07, 2006

Harder & Harder

May God bless and comfort Christi
Helpful Sissy tucks Christi in (again).
Mommy & Christi
Today's Radiation
Sleeping Warrior













As this is becoming more and more difficult to write about, I’ll be quite
brief:

*Christi’s pain is under better control since the narcotics were
increased today.
*Christi’s LDH (which measures the aggressiveness of the tumor cells)
went from 2,500 last week to 12,899 today. (Normal 420-700)
*Christi’s chemotherapy was discontinued today due to the
aggressiveness of this damn, evil disease which I will curse to my grave.
*Shayne and I met with the palliative care team to start to work out
our transition back home, most likely next week.
*Christi received radiation to her brain and her left leg today.
*Christi’s blood pressure continues to be high while her heart beat is
low (not a good combination).
*Christi was awake about 30 minutes today and ate a few bites of
cereal.
*We thank the sweet ladies at the Penn Vet Hospital for taking Shayla
for many hours today as we were on continuous adult conversations.
*During a long reality chat with Shayla she finally told me her
feelings. “I don’t want to be an only child,” was the first of many sentences
out of her mouth.

Wednesday, September 06, 2006

Finally the Photos Loaded!

Blogger is now allowing me to post the photos I'd had intended to post with my last set of text. Additionally, I had assumed that I'd be back at Ronald with Shayla by now; however, as I was ready to pack up Christi had another tremendous break through with her pain. As she screamed in horrific pain I, for the very first time, asked God to "please take her now". As Shayne texted me days ago, "I am no longer afraid of hell after watching her suffer, nothing could be worse."

I am still clinging on to the slight chance of hope that this radiation may be working to give her pain relief and to give us more time with our courageous and beautiful hero. The CT results I now have printed copies of say that overall the brain tumor is slightly decreased in size.

Today's pain was mainly in her back. Dr. Maris is right, it appears we're now trying to chase the pain. It seems to be moving each day telling me the combination of about seven different chemo's she's now on isn't working as it's taking over the bone marrow. Christi asked many times today, "Why does it hurt so bad," responding, "it's the cancer," wasn't a good enough answer. At this point I cannot even look any one in the eyes as I'm afraid to see their painful looks of fear and sadness staring right back at me.

Prayer Request: for pain relief for Christi, for peace for her precious soul and for strength for the weary Thomas team

This is the hard mesh mask which is pushed against Christi's face for her brain radiation. Her head "rests" upon that hard red block- true torture.
A very tired daddy reads "Stink" to Shayla.
Shayne took Shayla out to feed the squirrels today which brought them both joy.
Sitting and watching sissy play video games.
Shayla's been enjoying the wheelchair in our room.
Today she actually sat up for a bit! Go Superhero, Christi!
Christi getting set up for the leg radiation treatment.

Too Emotional

Those are the words coming to mind in reflection of our day; therefore, I’ll try to forget about all of the cries of pain and terror which came from Christi today and just post a bunch of pics before Shayla and I head back to the Ronald House. This way I won’t have to go into detail. It’s the details which cause my great heartbreak. It was a really rough day to put it gently.

Despite many of my tears today which were shed along with the continued pain Christi is experiencing and with the “torture” of the radiation treatments (“I’m so scared mom; I can’t help it. I know I have to do it, but I’m so scared.” and in a sick way humor: "Mom, this metal face mask is so tight it's smashing my nose down like a horse's nose. I'm goin to look like a horse." ) She ended up having her head in that mask being bolted back to that table in a room alone for thirty straight minutes. We sat outside the room listening to many cries of sheer terror. Ugh!


I also shed some tears of happiness and gratitude....

*Imagine my surprise to see two of the awesome staff members from the UPenn Animal Hopsital maneuvering the tunnels from CHOP to HUP with Christi’s nurse to bring some cheer to Christi, even though she wasn’t up to any cheer. (The last pain free afternoon was the one she spent with them prior to this rapid decline. How grateful we are of their kind hospitability showered upon our little “animal lover”.)

*Imagine my surprise to have one of the incredible day hospital nurses that has taken such good care of Christi for over three years come over to hug me and tell me how sorry she was and to whisk me away (to the closed playroom) for massage on her chair since she’s also a massotherapist.

*Imagine my surprise to see Liz Scott walk in carrying the most beautiful vase of flowers which really brightening our room.

God has certainly sent us Angels on earth to help us through a difficult storm which showered down upon us today. Thank you!

Misc. Rambling Thoughts and Messages

So sorry for not responding to any emails, snail mails or voice messages which you’ve sent. I’ve been receiving them, including one from a certain colleague which actually made me laugh out loud yesterday! I’m just not up to doing much more than sitting and mindlessly staring at Christi trying to soak this all in. She’s not really had any food since Friday and I continue to be filled with worry about how sunken her eyes look and how skinny she’s getting. Many times it seems like I just can’t take my eyes off this precious child who has taught me more about life than I could have ever learned any other way.

I’ve learned a lot since Christi’s diagnosis nearly 4 years ago (Monday). One of them being nurses are truly Angels on earth! Sweet Amy took my call each time I called her from the Ronald McDonald House last night, where I snuggled with Shayla but was unable to sleep. Amy told me Christi had been up to use the bathroom two times, but has yet to do “the deed” we’ve all been waiting for, for seven days now. She told me the number of times Christi hit her additional pain “boost” button and when inquiring about Shayne told me what a great dad he is. (I already knew that!)

Did I mention that from the time we left our room yesterday it was THREE HOURS until we were done with radiation and back in Christi’s room?! Even Dr. Maris said he couldn’t believe how long we were gone. He kept calling over here to see if we were back and we weren’t. (Now Dr. Maris knows us and knows Christi so if Christi would have been feeling well we would have “squeezed in” a trip to Barnes and Noble and maybe the zoo, but Christi’s far from those days! Yesterday she let me read a few books to her, but she’s far from being able to read for herself now.)

Liz Scott: I did think of something you could bring us. As you know from the radiation Alex had, hair loss occurs. This has been disturbing to me all week. Not only does Christi love finally having her hair back but she’s now a mature young lady of 9 years. I’ve yet to break this news to her and worse yet I’ve yet to tell her that she’s going to have a “reverse Mohawk” according to the radiation staff. YUCK! How humiliating! Can’t our kids get some dignity at least?? Christi has a nice hat collection at home, but of course I never knew things were going to be “this bad” when I boarded the plane. Could you please bring her a cheap, light-weight hat? The radiation staff told me she will look funny and she will cause stares with a “style” like that. The hair loss should occur by the end of the week so while there are no signs now of “getting out of here” it’s fun to imagine it. Thanks!

Shayla’s doing ok. The weather should be better today and radiation shouldn’t take so long so Shayne is planning to take Shayla out around the city to help her cool her heels. Unfortunately, the playroom here has been closed and will be closed the entire month of September because there was a virus and they don’t want it to be spread. Because Christi was miserable when they left and because we flew in for what was to be three short days I packed very few toys. Regardless, Shayla’s been such a good girl. Each day she draws cross pictures and each day she tells us she wants to go home and live with Amber and be like a sister of Amber’s until we come home. Each day she tells us she’s worried about her bunny dying from lack of food and water even though she knows Grandma and Laura and great bunny care takers.

Thanks to one of my sweet OSU Professors for the sweet email she sent me. My literacy group met without me lat night and she told me our family’s situation was central to their talks and that she’d inform me of the happenings as soon as I’m able.

Before I headed back to Ronald last night I clutched to Shayne’s neck, buried my head in his chest and asked if he thought she was the same or better or worse from the previous day because I really didn’t know. He told me that he didn’t know either and added, “I really don’t know which way we’re headed here.”

Then it was on to my “hassle” with the parking garage attendant. “Are you going to hassle us again?” was what I heard come out of Shayla’s mouth as I went to pay my parking bill. (Oh, talk about those embarrassing parent moments as I used my body to sort of push her aside hoping the gentleman didn’t hear my 7 year old daughter’s words.) You see the night before, I went to pay and it was $32.00. I told him that wasn’t right. He gave me the parent discount and then (I thought) tried to charge me double. I stood there insisting that I just pulled in at 6:30 AM and that he shouldn’t charge me two days. This went on for some time. Finally, he showed me the date on the ticket and showed me the date on the calendar which all cleared showed that he was right and my van had been parked there for two days. Oh, yes, how embarrassing! Perhaps I really have lost it. I had totally forgotten that we didn’t take the van back the other night. Oops!

So, I’ll update later today. Currently Christi’s still snoozing here beside me in her room as I type and she looks peaceful. Shayne and Shayla are looking out the window chatting away eating the food delivered for Christi since she won’ be touching it anyway. (Last night she asked for a sugar cookie much to our shock! This is the kid who doesn’t typically eat desserts and I’m certain she had no idea it was 8:30PM the cafeteria was closed and the rain was coming down in sheets. Ugh! I want her to eat (and to use the restroom) in the worst way!

Tuesday, September 05, 2006

Torture


I thought things started off well this morning with Christi actually being awake and able to watch Arthur DVD’s for 2 ½ straight hours. She even ate a few bites of cereal. With a continuous drip of Morphine (which was again increased today) her “only” complaint of pain was her right leg, but it was bad.

All too soon she started telling us she was seeing double. After many doc inspections a CT of her head was ordered so they could make certain she wasn’t bleeding. A platelet transfusion was also ordered “just in case”. (Hours later we learned that the tumor is about the same as it was 48 hours ago, but it looks like the swelling is a bit decreased.) That is most likely due to the steroid which Dr. Maris wondered if we’d noted her change of personality yet. “It’s hard to say,” is all we could come up with. (She’s been in so much pain, who wouldn’t be grumpy?)

From the CT of her head early this afternoon, we went directly with a doctor and a nurse through the complicated underground (cold) hallway system traveling with a very uncomfortable Christi in a wheelchair, along with her IV pole, all pushed by daddy. That’s where the real torture would soon begin.

All day and all night she’s continued to rate her right leg pain as a “20” on her 1-10 scale with all other areas being a “0”. (Now some of you wise folks may note that it’s her LEFT leg which has been the source of pain and it is the LEFT leg in which she had tattooing done and radiation simulation set up for. Go figure.) Every little jostle caused her excruciating pain breaking my heart and making me sob myself.

To get her leg ready for tomorrow’s radiation, they did the simulation and had to make a cast of her leg. It was so hot and she had to let the mold set up around her leg for 30 minutes. “Mom, this is 13X hotter than when Buttercup is on my legs,” she cried. (Buttercup loves to rest on her legs.)

And for more torture…..

Like the whole brain radiation, where they strap her on a hard skinny board lifted 4 feet in the air, and tape her head down wasn’t enough, today she had to be fitted for the “boost” which will be given to her tumor next week. I know other parents warned me about “the mask” but until Shayne told me what had happened and until I saw it with my own eyes I never would have believed that had been done to my Christi. (I took a very antsy Shayla for an exploration walk around the Hospital at the University of Pennsylvania – HUP) Shayne sent me in as soon as a parent could go in. Not only is the hard mask tight on her face, leaving indentation marks, but then after she’s in place they bolt it to the hard table she’s on so she cannot possibly move. Horrific. Then they informed us that the machine broke and she’d have to do it again. Saying a bad word out loud, I rushed over to her and could only wrap my arms around her strapped down on that table and put my face beside hers, our tears mixing together running down our cheeks. I’ve never felt so helpless.

Next it was to another room for the actual brain radiation of today. She was so scared and asked that I not leave her. Because I'm not allowed to stay in the room during the radiation treatment I watched her on the monitor and sang to her through an intercom to try to calm and sooth her.

Torture. It’s the word which keeps coming to mind. Why are we permitting this t happen to her? Should we just wave the white flag now? On Monday it will be four straight years of this fight. Is that enough? I just keep reflecting upon Dr. Maris’s response when we told him days ago that he needs to tell us when to head home and that we will. We don’t need to try to treat for our sake; we need to do what’s best for Christi. Dr. Maris has continued to reassure us that he’s “cautiously optimistic” that the radiation will give her pain relief and more time. Shayne has asked days, weeks, months and Dr. Maris said he cannot answer that. Each day she continues to take countless meds and chemos as well. Dr. Shayne is doing a fabulous job organizing and administering all of her medications.

So even though the pain is now in her right leg, Dr. Maris said that once you start chasing the pain this is actually pretty common. Regardless, he said we’ll stick with the plan for tomorrow and radiate her left leg and not her right. Hmmmmmmm…….

Gloomy


Film Noir-A movie characterized by low-key lighting, a bleak urban setting, and corrupt, cynical characters. The primary moods of classic film noir were melancholy, alienation, bleakness, disillusionment, disenchantment, pessimism, ambiguity, moral corruption, evil, guilt, desperation and paranoia. Film noir films (mostly shot in gloomy grays, blacks and whites) thematically showed the dark and inhumane side of human nature with cynicism and doomed love, and they emphasized the brutal, unhealthy, seamy, shadowy, dark and sadistic sides of the human experience. An oppressive atmosphere of menace, pessimism, anxiety, suspicion that anything can go wrong, dingy realism, futility, fatalism, defeat and entrapment were stylized characteristics of film noir.

When we were not in the environs of CHOP or HUP today we were trapped in this gloomy hospital room. It was a gray misty day and our room overlooks a construction site. I snapped a picture because I thought it would be the perfect setting for a film noir. For a bit of distraction I surfed the web and came up with the above definition. It really mirrors the mood of today.

Christi was not out of pain long and she had the most terrifying trip to radiation therapy. She was forced to be fitted for a radiation “mask”. Picture Hans Solo when he was frozen, only the mask was made of hard mesh. They called me into the room because she was so terrified. The icing on he cake was that the scanner broke down in the middle of the simulation so it was all for naught.

When we finally got back she climbed into bed and was trying to get comfortable, however, her pain today had shifted to her right leg and it was excruciating pain. Fortunately, Drs. Maris and Mosse were there to witness her outburst, however, this led Maris to say that we should get the palliative pain people involved. This is just one more small step away from treating her disease and toward just making her comfortable. Unbelievably sad…

Shayne

Morning Update

Thank you to the beautiful nurses who kept taking my phone calls and giving me “Christi Updates” every time I called them with worry from the Ronald House last night where I was trying to sleep with Shayla. I was back over here by 7AM and Shayla immediately walked across the room and piled on daddy to catch some more zzz’s. As of this morning, this is what Christi looks like snuggled up in daddy’s GSB shirt with some stuffed animals.

She told me all she needed was a hug so I hugged her gently. Although I couldn’t bring myself to ask, I know she’s hurting. Using some of her American Girl shower gel she loves from home, I gently washed her feet with warm water. Today we’ll meet with the radiation oncologist as she will have to do the simulation set up to add her entire left leg into the radiation plan, in addition to her brain radiation. I wish there were a better way to get her over to HUP for her radiation. She’s in a lot of pain riding all the way over there in the wheelchair despite my best efforts of easing her discomfort with a pillow and a blanket.

This is all like a slow motion nightmare, truly surreal.

Monday, September 04, 2006

In "Our" opinion


Christi and i have been kicking a few things around this week and now feel compelled to share our opinions on a few important universal matters. Number ONE is that Pluto should be brought back to the status of planet. Full credetials! none of this dwarf planet business. We are considering having T-shirts made up that say "Pluto for Planet-06".

Since we are already shuffling our knowledge base, lets get the colors of the rainbow straightened out. Christi feels that Indigo is really a shade of a color not really a color of its own right and thus should be demoted accordingly.

Third and most pressing is the location of the "Rocky" statue in Philadelphia. The art elite have conspired to move the statue from the steps of the Art Museum to the sports complex and now to some uncertain fate. When Christi dashed up the famous steps (with a hemaglobin of 8) a few years ago, imagine her disappointment. No Rocky statue with arms raised victorious was there to great her. What a great tool to bring amatuer atheletes and art novices to one of the great museums of the world.

Other than that we are cool with the world...well other than cancer sucks and should be banished from heaven and earth.

Shayne

Habitat for Hope

This is "the position" in which Christi spent 95% of her day. She rated her pain on the 1-10 scale today at a "6" - much better than a "15" but far from where it needs to be. She was awake for about two hours today. While Shayne went out for a desparately needed long run, she wanted me to crawl in bed with her and watch the Arthur DVDs we borrowed so I was thrilled to do so. (She's been in so much pain she has not even been able to watch TV for the past few days.) While I was out on the walk Shayne insisted I take to get out of this hospital, the gorgeous Liz Scott dropped by and helped them pass the time. (Thanks, Liz!)

After lunch today, a nurse told us that "Habitat for Hope" (see link on title) was bringing us dinner tonight. Christi was surprised to learn that there is an organization housed in Tennessee created for and devoted to praying for Christi and kids like her. Tonight I received the call that a food delivery was in the lobby. Shayne went down to get it and walked in with a HUGE smile. He was carrying POD restaurant bags!!! (That is the restaurant which we've noticed for a very long time and have wanted to eat there, but never have! That is the restaurant they were headed to until the downpour prevented their departure from the Ronald House. Imagine our pleasant shock and surprise!) And like that wasn't enough, Christi has not had a bite of food in days. She ate three bites of one of the most delicious steaks we've ever enjoyed.

Shayla should be arriving back here in a matter of minutes. I thank the Grants for taking such great care of her since she picked staying at their home over staying at the hospital. (Imagine that!)

Yet another visit and talk wtih Dr. Maris

Pictures

All of the pain meds are now allowing her to rest.
A fabulous oncology radiation team at the Hospital of Pennsylvania (HUP)

Pain Continues

Finally resting peacefully
A concerned Dr. Maris talks with Christi
After a decent night in terms of pain (no crying out for the most part) Christi woke up feeling a bit better. This morning it seems to be her leg hurting more than her leg. We've just returned from radiation where they again did a whole brain zap leaving me in tears outside the big radiation door. This girl is such a trooper; she felt horrible and had me rushing back into the room at one point because she felt like she was falling off of the table. Upon leaving today she tried her best to joke with the sweet folks in radiation at HUP by saying, "Don't drop anyone else off of your table today." (Well, Christi doesn't realize it's Labor Day and they are only doing emergency cases today.) I wish she felt better. It is so hard watching Shayne push her in a wheel chair with tears from hurting rolling down her little cheeks.

Some have asked if surgery were an option for this new large mass inside her skull. Dr. Maris told us immediately yesterday that surgery would be too dangerous and she probably wouldn't make it through. He also said if she did, the recovery would be long and hard and the disease could take off even more at that time. He told us that he felt it best to do whole brain radiation instead of just the one large mass because there are other areas in her skull ready to take off so this will hopefully slow it all down versus trying to catch the spots taking off later. Regardless, it's heartbreaking and I just keep relating it to torture of our precious sweetheart.

Today we're anxious to get Shayla back and to hopefully have Christi's pain decrease. Her cheeks are so red and flushed today, but we were told that was from the steroids. Tomorrow, when the regular radiation team is back at HUP, they'll begin radiation to her entire right femur as well as her brain. Does this ever get any easier?

I've attached some more pics taken yesterday.

Shayla saying bye before heading to the Phillies game.

Can’t sleep so I’ll reflect and upload some pictures. (Earlier tonight Shayne posted a few down in the previously posted entries. Mom, there’s a really cute one of Shayla hugging Christi upon our arrival late Friday night at Ronald.)

Surprise: Shayne hung up his phone and told me, “Aunt V trimmed our bushes.” (Shayne’s sister and I have this running joke about Shayne’s lack of bush trimming. He either butchers them or lets them get out on control. So it didn’t surprise me that she trimmed them, but it did surprise me because she lives in ARIZONA !! Apparently she flew in to surprise us for Labor Day weekend and instead we surprised her by not being home. (Sorry, V! Love you!)

Last night Christi rated that her pain was down to a 7.5 on the 10 scale. (For the previous 48 hours it had been a 15 so we were very happy about that.) She was able to sip some water so we thought Christi was feeling well enough last night to try to get her chemo pills in. That lasted about two minutes before she lost them. At 4AM she told the delightful nurse that her pain was down to a 4. How about that for the power of prayer! The radiation takes a while to work, if it is even going to, so we attribute the fact that she’s feeling better to the steroids she’s on which should help to reduce the swelling of her brain and to relieve that horrible pressure and pain she’s experiencing.

Thank you Sylvia for providing Shayne and I with Holy Communion at Christi’s bedside yesterday and for giving Christi a special blessing since she’s unable to eat.

We had a bit of a scare last night. Christ’s wearing heart monitors and she kept setting the machine off for having irregular heartbeats. Knowing earlier Dr. Maris told us that no one would try to do anything heroic I was very anxious. An EKG was done which turned out fine. It must be her many meds that she’s on.

Sweet Shayla made us cry last night. Even though she’s staying overnight with the Grants and did not want us to drive out to get her when I called and asked her, we found a note she left behind. It said, “Help is my job.” She’s a sweetie!

Sunday, September 03, 2006

No Relief

CT & Angela in the ER Saturday afternoon.

So far nothing has helped to reduce her pain. The decadron is to help reduce the swelling she has in the brain and it should have relieved her pressure by now, but so far nothing. Again her morphine dosage was increased to try to help. The list of meds seems to grow and grow. She received a platelet transfusion today as Dr. Maris said he is very concerned now about bleeding. Additionally, he said her heart could stop at any time. Her vomitting continues and she hasn't a bit to eat again today. Ugh!

We've just returned after spending a few hours at the adult hospital next door (HUP) doing all of the necessary work ups for her radiation and she had her first treatment. She is such a trooper! I love this gal!! (The individuals who were called in tonight for this emergency radiation were incredibly sweet. The basement of HUP incredibly creepy.) I could barely make myself sign the consent forms for the "full brain radiation" seeing the big list of side effects, but somehow I quit reading and just signed them. (Truly nothing you'd ever pick for your child if you had a real choice.) We pray that she starts to feel better soon. Tomorrow at 9AM she'll again have the full brain radiation to try to stop the spread of what everyone keeps referring to as "the large mass". (Like I wasn't queasy enough before!)

Shayla happily left all buckled in the Grant's backseat with Celie and Brigid at noon. I know she is in great hands and probably hasn't been told, "Quiet!" once since she left the hospital. This morning was incredibly tough with so much being thrown at us and with Christi in horrendous pain. The doctors would pull us out in the hall so we'd leave Shayla in the room alone. Once, after a long consult, we can back and found the room all straightened up. Another time we walked in and couldn't find her - she was on her knees in the bathroom with a wet paper towel cleaning the floor. (She didn't learn that from me!) Seriously, it must be a coping mechanism of some sort and I had two talks with her today about the fact it's okay to let us know how she's feeling and what she's thinking and she doesn't need to take on the role of trying to be good and happy to cheer mommy and daddy up. Guidance counselors, your help is most welcome!

Tina, Christi was awake just long enough to say the balloons you sent were pretty and she wanted to tell Shelby a "Happy 12th Birthday" but couldn't sit up long. (Shayla thought you were here because we said, "Aunt Tina sent the balloons." She was disappointed, but she learned an important lesson - Today Shayla learned the power of a credit card!) Christi was able to joke with the sweet nurse a couple of times today by making her stuffed cat say "meow". (Very cute!) We'll settle in with some chicken noodle soup now and try to get some sleep tonight, somehow.

Prayer Request: We pray for Christi's pain to cease and for her little soul.

Dangerous

Dangerous and life threatening is how Dr. Maris just summed up the new tumor which is growing down out of Christi's skull and is now pushing her brain to the side and causing this horrendous pain. It is quite large. Looking at it myself on the CT, I just couldn't believe how big it is. It's on the top right side of her skull pushing down. There is quite a bit of swelling which is also contributing to this unbelievable pain. I thought I could somehow manage my composure, but it was just too much. I nearly passed out and I had to crouch down in the hallway to try to get the pins and needles feeling, lighteheadedness and nauseous feeling out of my body. I'm still shaking in disbelief. This is heartbreaking.

In addition to the calcium and phosporus bolus she is getting she'll also begin on a steroid (decadron) immediately to try to reduce the swelling and pressure in her brain. Since seizures are likely, she'll begin an anti-seizure medicine too. Although perhaps I shouldn't share, Shayne and I took Dr. Maris's recommendation and agreed not to bring her back if it's her time to go Home. We should be meeting with the radiation oncologist shortly and she should be on the table getting her first of (probably) five days of radiation with the goal being pain relief.

I ask that you pray for pain relief for Christi, for peace for her soul and for strength for Shayne and I who are not holding up very well at all. Thank you.

Hurting


Upon our arrival, Shayla and I stopped at the nurses' station to inquire about the night. Shayne and I had text messaged until midnight, but I didn't know anything beyond that. Unfortunately, I was told her night was very rough with a great deal of pain and vomitting. When she was here in pain in January, she received 1 mg. of morphine. Last night in the ER she received 2.5 which never helped ease her pain. It was upped to 3 and then 4 last night; yet still not enough for the horrendous pain. They decided to up it to 5 and then to put her on a PCA pump for a continuous infusion. Hopefully, that will help get her out of the pain. Dr. Maris said in hindsight he should have done that last night in the ER, but he was hopeful what he did would have worked, but it didn't.

Dr. Maris was in this morning. He's concerned about what may be going on in her head so she just left in a wheelchair with Shayne to get a CT done. The results will let us know if she'll begin radiation immediately or not. Dr. Maris said that they'd also do her entire left femur to try to help with her leg pain as well while they're giving her radiation. We are in a palliation mode now and will soon be meeting with the radiation oncologist to get things rolling in case we end up going that way. (We'll see what the CT scan results say.)

Dr. Maris said he'd see us later with the news and I'll update then. Shayla will be meeting Mr. Grant and his beautiful girls at noon to give her a break from this hospital. My heart is breaking for her. Days ago, the wonderful Ronald McDonald House gave Shayne four box suite tickets to the Phillies / Braves baseball game for today. We kept thinking we'd somehow make it; yet, yesterday made us realize we couldn't possibly make it to the baseball game. Shayne and I can't stand the thought of leaving Christi, yet I'm certain it'll do Shayla some good to get out with her Phildelphia friends for the afternoon at the ballpark.

Dave & Laura:

Hi, Laura! We' all ready and heading over to the hospital now. Shayla's so worried about her bunny. Will you please make certain it has food and water? THANK YOU!

Saturday, September 02, 2006

Sickening

With today's pain continuing non-stop and new pains now in her head, forehead, and eyes in addition to the "tossing of the cookies" episodes, I emailed Dr. Maris this afternoon. He said to meet him in the Emergency Room. (What a guy! 4:30 on a Saturday night and he meets us at the hospital.) Unfortunately, he didn't share news we wanted him to tell us after he examined her in the ER. He said that the disease taking off is his number one suspect. Oh, kick me when I'm down. Shayne and I both shed plenty of tears in the ER tonight and I did again while snuggled with Christi in her hospital bed where she has been admitted on 3 south. In the ER they gave her much higher doses of morphine that she had been taking and ran some other meds. Sadly, Christi continues to rate her pain as "15" on a scale of 1-10. Shayne said a few times this week it got down to as low as .5, but definitely not today. I wish I could do something to take this pain away from her. Shayla and I are now back in our room at Ronald. We'll be back at the hospital tomorrow about 7:30 as Dr. Maris will examine Christi around 8AM. We look for her to need blood products tomorrow, which was another shock. Her hgb. is now down to 8.6 and her platelets have fallen down to 28. The chemo wasn't to do this; I'm assuming it's the disease. I'm so thankful Shayne didn't feel comfortable driving her home on Friday after he was offered that option. What would we be doing now if he had? Oh, I don't even want to know. Thank you Lord for providing that man with such wisdom and guidance. We'll "try" to get some sleep tonight. This is tough.

Brutal

Woah! I really thought I was "ready" for this; however, today I've come to realize that I didn't know what horrible shape Miss Christi would be in upon our arrival. This is awful. She's absolutely miserable. I keep wondering, "Who was the girl that welcomed me to the Ronald House last night?" That same child isn't here today. She has only been awake for about twenty minutes today. During that time the girls picked up like nothing was wrong. Now she's once again back in "the position" (Curled up in a ball clutching a stuffed animal dozing off and on, and having a lot of pain). How did Shayne do this by himself all week?

While Shayne and Shayla are off somewhere in this "house that love built" watching TV and doing some crafts together, I'm now sitting here in our room at Ronald reflecting upon this wonderful house and what it has so lovingly provided our family. In addition to all of the basics, wireless Internet was installed weeks ago which now gives us email and Internet without leaving Christi's bedside. Praise God! Additionally, when we first started staying here back in 2003 the rooms didn't have any TVs. Now all of the rooms have TVs, along with video and DVD players. We are oh so spoiled. I won't even mention the kind volunteers or I'll start crying again. God's people are good!

Thomas Team Together

A text message from Shayne earlier informed me that Christi’s biggest complaints were: pain, fatigue and boredom. I knew I could do something to help with the boredom so I packed the two bday gifts Vicki sent Christi to take along to Philly. (Who said they were late, Dr. V.? Christi joked, “Maybe they’re early!)

My deepest thanks to Mom and Paw Paw for driving us to the airport and for answering my countless phone calls of stress, worry and fear throughout the week!

Having some extra time to kill at the Detroit airport, due to Ernesto delaying our departure, Shayla and I wandered down to a store Christi absolutely loves there, “The Stylish Pet”- an overpriced pet store. (Any wonder why DTW is her favorite airport to fly out of?!) We found “Dogopoly”!! Now we have and all four love playing “Catopoly” which Christi received as a gift this year so we didn’t “need” Dogopoly at all; however, I knew we’d enjoy playing it. Thanks to a very kind envelope I received from a friend in the school office Friday I decided to go ahead and buy it. (Thank you!) I’m glad I did! As soon as I unzipped my suitcase and showed it to Christi they squealed with delight and immediately started setting it up- oohing and ahhing over all of the “cute” doggy things involved.

Having the fear all day that our flight was going to be cancelled and that we’d have to overnight somewhere in Detroit, I sat in my airplane seat last night and literally shook with the emotions of it all. Then I found myself talking in my head to the sweet Jean & Kent who so lovingly got our airline tickets to get us out here and to Tim Grant who called my cell claiming he was working late so he’d pick us up at the airport and drive us to Ronald. God has richly blessed us with good people walking along with us.

When we pulled up at Ronald about 10:30 PM, I heard Christi giggling. You can’t imagine my shock and surprise to see her walking out of the front gates onto the city sidewalks in the pouring rain in her pajamas to greet us! Earlier Shayne told me she just couldn’t get around well because her left leg is causing her horrendous pain. It was a pleasant, nearly unbelievable surprise. I picked her up and didn’t put her down for a long time.

The girls were so glad to see each other and played and told each other about their week until midnight. I couldn’t believe how good Christi looked and how she was out of bed. Well, I see what Shayne means about the pain coming and going- three times while I was sleeping with her in her bed lsat night she cried out in pain that her leg hurts so bad. It’s so hard to watch her suffer and cry in pain. She’s not yet awake this morning, but I’m still praying she’ll be up and about a little bit today and that she’s able to do some things she enjoys!

Friday, September 01, 2006

Friday


Christi was extremely tired this AM. It is assumed that this is caused by the meds not the disease. At clinic today her counts were: Hgb 10, platelets 36, & ANC of 3000. This tells me that we have done and adequate job of protecting her marrow while throwing some anticancer drugs at the disease.

She wants to send thanks to Code Blue for the glowing bear thingy. She loved it! Special thanks to our friends at Liquid Salvation. A case of their fine Ultra Hydrating water arrived today. Just in time too because she prefers taking all these meds with water from a flask.

There is excruciating pain in her left leg if she tries to sit upright. She agonized the entire way back from the hospital. The pain resolved as soon as she got horizontal.

Angela and Shayla will be flying into the Ernesto the tropical storm sometime tonight. I expect them to be delayed, I just hope not too much.

Shayne