Fortunes

Christi is checking her email if anyone would like to send her one animalloverchristi@yahoo.com

She is up now working on a creative project; she asked me for a fortune that she could include with it. How did I do?

your life will be judged
not by its length
but by your strength



Well after a day of suffering, a call from her mother turned everything around. She perked up started eating and doing crafts. She will probably be up all night now since she slept most of the day.

Before bed she did her Thalidamide. It is supposed to make her very lathargic. I am anxious to get more anti-cancer meds into her. Our “throw in the kitchen sink” game plan follows.

Here goes:
For pain; 1) extended release morhine 2x daily
2) dilaudid for breakthrough pain
3) stool softner to combat the ill effects of morphin

Anti Tumor Treatment
4) Doxirubicn 1x per week IV
5) Thalidimide-2 pills at bed time
6) low dose Cyclophoshimide starting Friday
7) low dose Etopiside alternating with Cyclo
8) Zometa to ease bone pain investigational for anti tumer effect
9) Oral calcium to balance the calciaum imbalance of Zometa
10) Celebrex 100 mg X 2 day (investigational for ant-angiogenisis)
11) Tricor 48 mg x 2 day (investigational for anti-angioenisis)
Other
12) sski protect the thyroid from the MIBG-one more day
13) Bactrim-who cares not doing it until her counts drop
14) Zophran-for nausea 2x daily


Our current situation reminds me of hiking Camel Back Mountain in Arizona. You drive and drive to get to it, you can see it coming the entire way, there is plenty of time to prepare, however, when you get out and start climbing you realize that it was much harder than you anticipated....

shayne

Bad Stuff

These are the current drugs that Christi is taking




This was her position for most of the day. Sad....

Good stuff

UPenn ER




Goodlooking! Sister?





Favorite dog...what a story





Cuties





a true gift-CHOP nuc medicine

Thursday

Back at Dave & Laura's again.......

I spoke with Shayne a bit ago. Christi's day was about the same as yesterday's and Shayne's was again stressful like yesterday. (He had to run- literally, back to CHOP as another chemo arrived for CT.) Like yesterday she was again only awake about 5 hours. The pain is still there and the drugs must be helping, but simply not enough. Regardless, she is waking up and taking her meds like the true "Warrior Princess" she is! She did want to go to the Barnes & Noble; however, today she was too uncomfortable in her jogging stroller or in a borrowed wheelchair to allow them to make the jaunt, just a few blocks away. Nevertheless, she did read some books and watched some TV snuggled up with Shayne while she was able to stay awake. Her eating as really decreased.

I received an amazing phone call just a bit ago from a "Christi Fan in Ireland" - no kidding! Absolutely amazing! So prayers are being send across the ocean today. Shayne wrote the following last night, then his phone wouldn't allow him to type any more or to post it to the blog so here it is, a day late.

FROM Shayne

"Lighter Reflections"

Although we have been burdened with a lot of pain and medical stuff, Christi and I have managed a few smiles. Since I can't sleep again, I thought I would share a few smiles.

Last night it became clear that the oxicodine was not going to control Christi's pain. I decided that the next time she cried out that I would give her dilaudid- starting with a half. Through the loving foresight of my sister I am able to make all of Christi's medicine into uniform capsules. My sister has provided me with a pill crusher and a pill cutter as well as the necesary empty caps. Since I was going to give christi a half, I cut the dilaudid and placed into two capsules. When she awoke she was in terrible pain so I decided to give her the whole dose. She looked at me and said, "Dad why in the world would you cut the pill in half and make me take two capsules?" Then we laughed about how silly I was and she said I was just tired and did not think it through very well.

After our delightful tour of the Vet hospital by the gorgeous Jody (Thanks Angela - I owe ya one!) CT and I were headed to "Pod" a fancy Martini bar Asian restaurant on Sansom street. In preparation Christi and I had dressed nicer than our usual "hospital atire". As soon as we stepped out on our way a monsoon struck and we got soaked to our underwear. Although she was agravated that I wouldn't go any faster, Christi's bubbling laughter didn't stop when we got back to the room.

Our departure to Philadelphia on Sunday night was delayed an hour because Christi insisted on making a model magic scupture of Sponge Bob for one of the great nuc med techs. Today she was able to give it to her and she just beamed with pride as she delivered it. The tech said she still has the picture of Sponge Bob on her refridge that Christi gave her in 2003. I was sorry the tech had to witness Christi's poor scan today - and my general lack of composure.

We were tipped off that Christi's cat ceiling tile she drew and painted in the hospital back in May was placed in the bone marrow transplant family room so we went on a quest to find the location. As we were opening the door, an orwellian voice came from above "step away from the door" Christi and I stopped shrugged and continued as if we were entering the room. Again big brother anounced "the playroom is closed". Christi broke out her squirt gun and sprayed the door and we walked away contented that we had gotten the better of the system.

Almost Friday!

I've again hardly had any contact with Shayne and Christi today so I hope he is able to call soon or to post an update. During my lunch break phone call Christi seemed to be "the same".

Once again, I'm at our sweet neighbor's home using their computer- thanks Dave & Laura! (I must be like having another teenager in their home!) Thanks to the wonderful Pricilla at Bright Net for calling and checking on me; NO it is not any problem with Bright Net! I'm willing to bet I accidently pulled out a wire or something simply like that; hopefully, Shayne will be home soon so I can take care of things. That amazing man always fixes my computer problems.

Not being able to fly out until school was over on Friday (a holiday weekend) and not wanting to return home until Labor Day, the prices of flights suddenly went sky high. The flights that would work were $958.00 per ticket so I called a sweet Angel on earth who had previously offered frequent flyer miles to us just on the slight chance she may actually be able to book flights for us. (We've tried to use frequent flyer miles many times before, but it has NEVER worked out.) By the grace of God I learned this morning that Jean booked our flights so Miss Shayla and I will be arriving in Philly Friday night! THANKS, Jean & Kent!! I don't even want to know how many miles THAT must have used, but I'll forever be grateful of their love. Mom and Joe will drive us to Detroit. That way our vehicle won't be at the airport in case something goes wrong and we're not able to make it back Monday afternoon.

Just wanted to let our family and friends know what was up and hopefully Shayne will be able to post a "Christi update" soon. Saying I miss them is an understatement!

Photos

The Scan a Parents view...





Fonder views!!




With the awesome Dana








Pet Vets Wed night

update

I am updating from my phone so sorry if it is written like a text message.

we finally achieved some pain control tonight. Christi is taking morphin extended release with dilaudid for break through pain. one of the anti cancer drugs is also a pain killer celebrex. she rested well this afternoon and got up and ate like a champ-thanks to the Grant family.

it was a stressful day which included a scan, a depressinf meeting with maris and six trips to two pharmacies. She got zometa IV to help the bone pain and will start thalidimine tomorrow. she is up to 13 separate medicines.

my heart aches for penelope's family. they had a difficult day as well. it is amazing how close you can feel to someone when you are going through the same shit at the same time. please visit her in christi's clubhouse and send them positive thoughts. they love their child so much...as we all do.

hopefully tomorrow will be a turning point and we will wake to a new day. I am beat.

special thanks to those back at the bank cleaning up my messes.
I hope to be in a better position tomorrow to interact in business.

Christi still has a twinkle in her eye. she is frustated yet determined to continue to live her life her way. each new person we meet tells us that we look exactly alike. I wish I could take her place like an identical twin prank...

thanks for checking
shayne

The news out of Philly is anything, but good. I spoke with Shayne this morning during my planning period. Her disease is much worse with increased cancer all over: liver, skull, shoulders, ribs, pelvis, spin, legs- shall I list anymore? Additionally, to the news of the new, multiple areas of disease and increased disease, the dox chemo which was given two days ago has not given her any pain relief as Dr. Maris felt it would.

She is now on a 24 hour morphine drip to try to help with the pain. The other (5+) chemos will begin today. All agree that it’s best she remain in Philadelphia even though she wants to come home and go to school.

Shayla and I will join them after school on Friday. I appreciate offers of help with her; however, we've decided from this point on it's probably best to keep her as close to the situation as we are so that she'll maybe be able to understand this later on. (I don't think I'll ever understand.) Thankfully, it’s Labor Day weekend and we can have some of Monday together too before we have to return home to get to school on Tuesday morning. I saw my paycheck today and learned that I am negative two and a half sick days. Ugh! This just doesn’t get any easier!

grim

officially Christi has extensive progressive disease. Although I have continued to amp up her pain meds she is still suffering. our meeting with Maris was grim. We are running short on options. Today we decided to throw in zometa to help relieve the bone pain. she will go on morpine. Angela and shayla are planning on a trip her. I will be here until at least tuesday because the situation is so fluid and I am concerned about losing control of her pain
shayne

Internet Down

For whatever reason I lost our internet connection early this morning, so I just wanted to update here and let people know why I wasn't emailing them back. (I'm at our very kind neighbor's house to get on-line now.)

I've had limited contact with Shayne today. I do know her pain is being managed- of course this means Shayne is setting his alarm every three hours around the clock to give her pain meds. (He must be beyond exhausted on day #3 of this! Yesterday he said taking care of everything they had to get around and dealing with the emotions of it all was the most challenging and hardest day in his four years of this.)

My new concern, which Shayne mentioned in our two very brief chats today, is that Christi is so very tired. (That can't be anything positive.) With Shayne whispering, while Christi slept in their room at the wonderful Ronald House, we couldn't really talk. I do know they made it to the UPenn Animal Hospital, to her hospital tests and yes, to the Barnes and Noble again today. I don't know if they were able to get any more of the chemos today or not, or when they may be back or anything. I do know I miss them terribly and dearly wish I were with them. (Thanks to the Bowerman's for letting Shayla and I spend time with them tonight to help pass the time!!)

Tomorrow's MIBG scan is scheduled for 8:30 AM then they'll be off to yet another meeting with Dr. Maris. We pray for the blow to be as gentle as possible.

****UPDATED: I just read the blog comments and learned from a vet nurse that Christi was a bubble little girl tending to a puppy with a broken leg at the awesome UPenn Animal Hopsital today!!! (THANKS FOR SHARING!! I hate to call Shayne as I want him to get his rest.) THANK YOU for telling me how happy she was today! It is so hard to be away right now!!!! Thanks!

No NYC = No Pokemon Stickers

When I called Shayne during my planning period today, I didn't realize he and Dr. Maris were already one and a half hours into their meeting. By that time Shayne had been trembling and had pushed himself up against the wall and cried his eyes out. So now it makes perfect sense that when I jumped into their conversation it went like this: "Angela, I've just gone over the menu of choices with Shayne and quite frankly the menu is extremely limited. I have evaluated her and despite all that's going on, she looks remarkably well." I responded with, "Tell me how my husband looks." Dr. Maris replied, "Well...honestly.....not as good as Christi does." HA HA HAHA!! Isn't that funny? I'm finding humor in little things tonight and now that I just hung up with Shayne I think he's finally going to try to catch up on his long overdue sleep. That incredible man amazes me EVERY day with his love for the girls and I! Before he left he hugged me and told me "I" was his inspiration (Oh, we are in serious trouble now, aren't we?! I think he'd best pick a new inspiration because I'm not holding up too well!) Christi joked that she likes her little bed in the back of the van so much that she's going to start riding to school that way. What a hoot!! Ya know what? I just may let her!

Today was the first time in months that Pat and Dr. Maris witnessed Christi crying in pain as she was curled up on Shayne's lap trying to get comfortable. Now that we got the pain meds figured out better, we can hopefully control it for her. (We had "mild" and "max" going on at home because that was in our possession, but now we have an "in between" which will hopefully help.)

With the goal of getting Christi back to where she wants to be- school, her treatment plan was decided upon: It's a chemo combo (6 or 7 different low dose chemos) which started today to try to halt the progression. Then: thalidomide, celecoxib, fenofibrate, etopiside, cyclo then add zometa maybe on Friday before driving home. It is an antiangiogenisis strategy. For pain control regular tylenol with oxycodine every four hours. Her current pain rating is 4 on a 10 point scale.

In addition to other tests tomorrow she "should" receive more chemo drugs which are more challenging to get and for which Shayne was told once again that insurance companies typically refuse to pay. She will still scan on Wednesday and our prayer request is that she doesn't have any brain involvement. (This combo isn't going to be able to cross the blood / brain barrier.) Our sweet, sweet, sweet friends at the UPenn Animal Hospital will let Christi visit tomorrow afternoon and since Shayne's never been there I think Christi will love sharing that amazing animal place with him. I hope she's feeling up to it.

During the 2nd hour long meeting with Dr. Maris today Christi was in so much pain that she couldn't leave Shayne's lap and she had to hear the adult conversations. She learned that she will not be going to NYC to consult with Dr. Kushner, which was planned for Thursday. She was REALLY looking forward to going to MSKCC and especially to the Nintendo / Pokemon Center because she had her money to buy some Pokemon stickers for this "Collect all 150 stickers from the Pokemon Sticker Series 1,2,3, and 4" Pokemon Poster the girls have had since they bought it there in 2003! (This poster is so old they actually had to put masking tape around the edges and across the back, but they still love to add little Pokemon stickers to it and Christi was certain she could get more for their poster there. They have about 25% of the poster filled.) Isn't it amazing what's important to cancer kids? I guess I'm glad she just doesn't "get it", because I do and it actually stinks!

Thanks so much for the kindhearted people who have showered us with love! My sweet neighbor has offered to overnight with me, a sweet Heidelberg Professor offered to teach my middle school kids for free so I could be with Christi, and the kind emails and prayers will forever be treasured. Your reward in Heaven will be great; thank you!! Goodnight!

Gruesome

I don't know how else to sum up today's events in Philly. Today was (so far) the worst day of my life. I spoke with Shayne and Dr. Maris via conference call from my cell phone during my planning period and then called and spoke with Shayne again hours later during my lunch break to learn of the decision. Thankfully, my students take my mind away from what is really happening. My heart is breaking.

Platelets now down to 44. (Motrin decreases platelet production so she has been switched to Tylenol- with something in it, to help with her pain.) LDH up to an unbelievable 2300. She started a last ditch low dose chemo effort today. She'll still scan on Wednesday and I think they'll be home Thursday night. MSKCC in NYC's recommendation was very different ("ICE" for my chemo friends here), but Shayne and I decided to go with Dr. Maris's ligher recomendation instead to give her a better quality of life and I hope we don't live to regret it.

Escorted by Angels

With God as their co-pilot and most likely many Guardian Angels at their side, the "Thomas two" just arrived at CHOP; praise Him! Shayne said he's going to take a little nap until Miss Christi awakes. (I'm so tired for him I think he could sleep the entire day in the CHOP parking garage!!) Unlike many of their trips which have been endured through heavy rain fall and large amounts of traffic, Shayne said that this time road conditions were great and traffic was light. He made record time. (I kept waking up and thinking that my father and one of Heaven's new Angels, a 34 year old accident victim who's visitation Shayne and I attended last week, were leading the way in their dune buggies!! Dad & Stevie would have loved that! The mountains of Penn. would have been just like Mt. Baldy at the Silver Lake Sand Dunes!)

Christi woke up at 3AM and complained that her head hurt, but Shayne said she was still in a great mood! He gave her Motrin and that was enough to get her back to sleep- wow!! Hopefully, Shayne will wake up and they'll meet with Dr. Maris who is waiting for them, despite the fact he only sees patients on Wednesdays at nine, get a room at Ronald and then be off to the Philadelphia Zoo where Christi has been wanting to go to sketch since May. Wednesday's scan and its aftermath will be brutal so I think they should get out and have a fun day, if they're feeling well! Have a great day!

You Are About to Witness a Miracle

OK, so I really doubt that, but it's fun to think about! Can you tell by my lighthearted mood how drastically things have changed over recent hours? It was like Shelby's call this afternoon brought her back to life!! Truth be told, I half expected her not to be alive at the day's end they way things were looking. At one point when Shayne and I were upstairs whispering and trying to make big decisions I said to him, "It wouldn't surprise me to walk downstairs and find that she died on the couch without saying a word." Dear Prayer Warriors you've had a busy day; thank you! This has been miraculous in our minds!

The Thomas Team's Model Magic Creations

Christi has not taken any dilaudid since morning and the Motrin once again seems to be holding her pain. It's like Christi's back! Of course the worst of times have been during the night so we'll see what tonight brings, especially during the nine hour drive across Ohio and Pennsylvania. We actually discussed if they should head out tonight or if she could enjoy a day of school tomorrow because of how well she felt. Reality says these past glorious hours where we played a family game of "Risk", video games and enjoyed making model magic concoctions, are not going to last so it's most likely wise to go ahead and make the jaunt tonight while she's sleeping in the back. I guess if things go well they can enjoy the zoo after getting blood counts and consulting with Dr. Maris at the hospital tomorrow and if she's having tremendous pain again, she's already there for help and Shayne can try to catch up on the night of sleep he'll miss in their waiting rooms. (She's even feeling so well I actually packed their swimsuits and their Cedar Point passes which provide free admission to Dorney Park in Allentown. Ya never know! God is good and I'm full of hope!)

Regardless, I will sleep better tonight than I have all week because she's currently without pain and I wanted to share this glorious and blessed news with you as you've been so kind to pray for her- and all of us. THANK YOU!

And really, speaking of miracles, I think she's already been granted one. How else could she still be here after four straight years of: chemo therapy (41 rounds: high and low doses) radiation (weeks of internal and external high dosages) surgeries (big and small) Accutane, antibodies (humanized and mouse) and other experimental trials. We are so blessed. This week will be a challenging one, and most likely Christi's pain will return very soon. Thank you for lifting her up in prayer and we also ask for Dr. Maris's wisdom and guidance as we try to do what's best for Christi.

Christi & Vanilla: I snapped this moments before they left about 10PM. If all goes well, they should be pulling into CHOP about 7AM. (CHOP friends: Shayne will be the one sleeping in the waiting room, hee hee. Take care of Christi for me, please and buy Shayne a cup of coffee.)

A Day's Difference

A precious child in pain

Shayla and I baked a cake today while Christi slept.


What a difference a day makes! I am so thankful that we made Christi’s “movie” yesterday.......today was a different story! She was incredibly miserable not leaving the couch until 3:00 PM. The night was another horrible one as she came and crawled in and said it hurt behind her right eye, but that her chest felt better. (Did I know her chest hurt previously??? I think she failed to mention that.) After Shayne administered more narcotics, I rubbed her back trying to get her comfortable and back to sleep. She told me that the worst pain now is her head and a new area- along the bottom part of her right lower rib cage and the muscles inside around it. (Sounds like the liver, eh? Oh, no, dear Lord!) She hardly ate spending the day curled up on the couch with Grandpa sitting kindly beside her and Buttercup also sleeping at her feet.

At one point today I was packing her suitcase when she called for me. She told me that she was scared and not to leave her again. This broke my heart as I know she's soon heading out. She also had some vomitting today, but I think that's from the dilaudid (a pain med she's taking).

Shayne and I made some difficult decisions regarding treatment or not, resuscitate or not, etc. While we’ve made these decisions all along it’s amazing how your mind wants to do one thing and your heart the other when the time actually comes. How can you go down without an all out fight? How can you say goodbye by choice? This is beyond brutal. It goes without saying; we’ve shed rivers of tears and feel absolutely horrible about how quickly she’s declined in the past six days. Dr. Maris said that he will be waiting for Christi at the hospital tomorrow morning and he will help manage her pain. (He didn’t mention the words “get started on a new treatment” which is what I wanted to hear!!) Perhaps she can one last time be a “come back kid” yet that is not likely at all even though I’m not willing to accept that.

Because her pain is rapidly increasing and watching her suffer like we never have been has been gut wrenching, we decided that they will head for Philadelphia tonight. This will also provide the many conveniences of having their own transportation, which is huge and keeps them from needed others to help them so much. Finally, they can take more "stuff" this way and we know how Christi likes her "stuff". (jogging stroller, pillows, certain stuff animals, and foods etc.) We know treatment can’t possibly start before Wednesday; however, pain management can start tomorrow.

So, out of nowhere, about 2:30 she started eating and working on her power point slide shows she’s creating, even joking that she could add some more exciting animation to my teaching slides and my students would really like it if I ever want help. We finished a family book we had been reading and a family video we were in the midst of and then she wanted to call her Cousin Shelby. She sat on the computer and played computer games, ate and chatted happily away with Shelby for nearly two straight hours! You can’t imagine my joy to see her doing something so normal after such a harsh night and morning. Praise the Lord!

Do you think Buttercup likes her new Halloween outfit?



Thanks to many “Christi Fans” sending soft blankets over the years, I made her a little “bed” in the back of the van with eight (yes 8) blankets that were sent to her with love. I can’t think of better comfort to get her to Philadelphia than being surrounded by lovingly made blankets sent from well wishers! (I did not say the “safest” way to travel, but given the circumstances I’m willing to risk it.) Shayne plans to head out about midnight so he can pull right into the hospital about 9:00 AM. This will save them from having to get a hotel room and will allow Christi to hopefully be as comfortable as she possibly can be “at this time” to get her there.

I pray for safe travels and for Shayne’s strength and energy for what will be trying days ahead. I pray for peace and comfort for Christi and for Shayla’s mental health as this must all be so confusing for her. I’m going to miss them like never before.

A final cuddle as they'll soon be apart.

Yes, as noted in the pics she's still wearing yesterday's clothes. I'll soon get her in the shower before they head out, but she's been hurting so much in recent days I've hated to make her even more uncomfortable. May God bless, Christi.

PS: Thanks to all for offering to help me with Shayla, to go to the east coast with Shayne, or (here's the funniest one yet: Dress up like me and go teach for me! What a hoot!) We appreciate your showering of love, compassion and support. It does "take a village" and we thank you from the bottom of our hearts!! You are right; Christi is a child of many!

What a Pain!

Everyone loves when Grandpa visits!











Thanks to many who have emailed with their own experiences and also to Dr. Maris, we are now "trying" to keep ahead of the pain, however not always with success! It seems every 12 hours there is an additional area of pain (nonstop headache, neck, throat, back, arms and today upper legs and pelvis- indicating widespread disease in her bone marrow to us). She tells us it feels like the bone pain she gets from the Neulasta shots which indicates to us that the disease- located in the bone marrow in every bone in her body is pushing out her bones expanding them and causing this pain. The pain is definitely increasing as she's now breaking through the dilaudid (a narcotic). She's also becoming more and more tired. I cannot believe how rapidly this "freight train" is now moving!! A week ago she was pain free! Without a doubt, this has been the most difficult week of my life and next week will be even worse having to be away from her.

Despite it all, she's happy and has a great attitude! Shayne bought Power Point for my computer this week to help me improve my teaching. She sat on my lap letting me "teach" her what I'm planning to utilize for my first Heidelberg class this semester as we pretended she was one of my students. Afterwards she asked many questions about how to set it up; we did a few slides together and then she mastered it! Currently, she's working on "Christi Thomas by Christi Thomas". I'll see if Eric's able to add it to her website or something, somehow for anyone who'd like to check it out when she's finished. Her animals ones, which include great facts, have also been fabulous!!

Today a dream that she and her Great Aunt Marty have been talking about for three years came true. She wrote, produced, directed and had the star role in a homemade video movie "11 German Shepherds". The 50 minute drive to Jeff and Marty's was very hard on her- both ways (car sickness and the headache issue) but I'm glad we did it. The video came out great: six scenes with all of us in goofy roles; it was a lot of fun! We all have great memories!

Director Christi goes over scene 4: The Dognapping

Thanks to Aunt Marty and her 11 German Shepherds!

Paw Paw applies make up to Shayne- a villian








Our plans continue to be up in the air and with the pain increasing nearly hourly in the back of my mind I keep wondering if "this is it". I know of many parents who didn't think their child was "that bad" and then suddenly they were gone. Losing her while I must be at work next week is one of my greatest fears. (I am three sick days in the hole, ugh!!) Weeks ago airline tickets were booked to get Shayne and Christi to Philly on the 29th (Tuesday) and home on the 30th (Wednesday). Now I'm wondering if she can make it until Tuesday. Additionally, we're talking about possibly having Shayne drive her there earlier instead of waiting until Tuesday to fly. Traveling nine hours will be no picnic as it was hard just making the 15 minute drive to school with her each day this week (car sickness and the horrible headache). We know they will not return home on Wednesday as they're planning to take the train up to NYC on Thursday to make the consult scheduled with Dr. Kushner at MSKCC. I have scheduled them a flight home from NYC on Thursday, but I doubt that will happen either as I'm hopeful treatment will begin back at CHOP on Friday- if not Wednesday! Should they drive or fly? Can she make it until then? How bad will the blood counts be? How bad will the MIBG scan be? Is treatment even an option? Can Dr. Maris call a "Hail Mary" to give us more time with her? Can I fly or drive to the east coast on Friday after school to spend the weekend with them? Should Shayla go too? Time is ticking and Shayne and I need to figure out the best things to do, while also taking care of Shayla's physical and emotional needs. (I took her to the doctor's this morning as she once again has another nasty ear infection.)

As always, your prayers and compassion are seeing us through! Thank you!!

PS: A HUGE CONGRATULATIONS to my friend Madeline who will graduate with her Ph.D. in Teaching and Learning from Ohio State University tomorrow!! We both took our first class together years ago and I am so happy and so proud of this amazing educator for working so hard and completing this incredibly difficult endeavor!! You rock, Madeline!!!

Barnyard

Christi's suffering has accelerated over the past 24 hours. Tonight she broke through what could be held back by motrin. I had to turn to dilaudid. This coming week is shaping up to be a challenging one. Will her pain allow her to travel comfortably? Does Doctor Maris have another rabbit in his hat? Angela and I fretted over whether we should wake her and give her pain medicine (we should have and didn't) which was just a proxy for all the decison we will need to make. Having watched so many cancer parents go through this before us has not cleared the path for us it has only served to enhance our dread of what probably lies ahead. There is no way around, we must just go over the rocky trail ahead.

As Christi writhed in pain tonight lying between us, my thoughts were on my failure to properly anticipate her pain and subsequent medication needs. A wave of guilt washed over me as I realized that I was wallowing in self pity while she suffered. Wednesday night we went to see the animated movie Barnyard with my dad. The patriach in the show proclaims that "As long as I am still kicking NO ONE will get harmed inside this fence". Powerful in the movies, yet far from what we can achive outside hollywood. Many of you Christi fans have been with us through the ups and downs of the past four years. Thank you for your support, we wish we could deliver a happy hollywood ending, however, we did not write this script. The Thomas Team members are but supporting actors. We will continue to stand our ground and not back down-we have a lot fight left -I am just not sure of how much time.

Shayne

Trying to Nail Jello to a Tree

I've been avoiding writing about Christi's medical situation as the news hasn't been hopeful over the past week. When I told Dr. Maris I was worried he responded, "We're worried too," which only increased my fears. Her pain (neck, throat, head, upper left back) continues and has increased to the point where she's now actually asking for pain meds (which she hates taking so I know it's bothering her). Despite it all, she has a smile on her face and is thrilled about being back in school- nothing makes her happier. She continues to amaze us every day; we truly do not deserve this incredible young woman. I just wish I could give her that normal childhood she deserves. Each day we've been cuddling on the couch and I've found her just curled up in her bed resting sometimes too - not the Christi I know. It appears that taming this beast is a bit like trying to nail jello to a tree, it's just not going to happen.

The trial which Dr. Maris was trying to get her a slot for isn't available. He does have her in a slot for another trial (CEP) yet that, like Fenretnide, is not at all promising and we're not certain if we'd like to go that route or not. Dr. Maris has blessed us with 8 more months which gave Christi a great summer. We'll forever be grateful for all of that! He has been consulting with Dr. Kushner back at MSKCC. They have some treatment options back in NYC for Christi; however, nothing promising and variations of previously attempted (extremely painful) treatments. Regardless, with the increased pain we know she needs to get started on something as soon as possible. Next week can't get her soon enough!

When Shayne and Christi head out next week (I am "in the hole" in terms of sick days so I cannot go.) I'll have her suitcase packed in case it turns out to be a lengthy stay. I'm just sick about what the news will be when her scan results come in early Wednesday morning. My hope and prayer is that treatment options exist and that they are not "sent home". Until then, we'll continue to ask for God's love and strength and we'll continue to live in denial and pretend this isn't really happening. (Easier said than done, and sleeping has been nearly impossible the past week.) Grandpa's arrived in the Buckeye state and he'll be spending the night with us tomorrow; that's great news! Tomorrow we're going to "New Riegel for ribs" (Just had to put that in there for all who know about New Riegel!) We love Grandpa and we'll focus on that!

Survey Responses

Christi completed this survey for her class on the first day of school.

Favorite color: blue
Favorite subject: math and science
Favorite music group: Don't listen to musical groups
Favorite TV show: Pokemon
Best Quality: drawing
Favorite book: Hank the Cowdog
Least favorite subject: Spelling
What sports do you watch / play? We don't watch or play sports.
What do you do in your free time? Play computer games & read
Place: COSI and Cedar Point
What is your favorite food? spaghetti & meatballs
Least favorite food? macaroni salad
Favorite holiday? Christmas
What place would you like to visit? Africa
Favorite season? fall
Future job? a vet
Goal for this year? Get better at spelling

by Christi, first day of fifth grade, Aug. 22, 06

Reflecting on Past First Days (2002-06)

1st grade (2002) 5 years old
2nd grade (2003) 6 years old
3rd grade (2004) 7 years old (I can't find the pic of her with her wonderful 3rd grade teacher, but I know I have one somewhere!)
4th grade (2005) 8 years old


5th grade (2006) age 9

Christi's First Day of School (2002-06)

Days before diagnosis (2002) 1st grade, 5 years old
2nd grade (2003) 6 years old









3rd grade (2004) 7 years old
4th grade (2005) 8 years old
5th grade (2006) 9 years old

First Day Back to School

Shayla greets her 2nd grade teacher.
Christi may not be feeling the best, but she was so excited about school starting this morning. She had a tiring, long, hot day (along with some neck pain and a headache) but a good one. We're grateful!


Christi greets her teacher before school.
Three blessed Thomas girls ready for school!

Picture Parade

With Aunt Marty's German Shepherd puppies
Thanks, Shayla (Mom & Dad love your masterpiece too!)
Thanks, Christi! (Mom loves her new living room!)
Ready for the Wall
Enjoying Eliana's visit
Final Morning of Summer Vacation (Snuggling with Buttercup)
Shayla with Ryder (Eric & Alicia's dog)
With Allie (Eric & Alicia's dog)

I walked into my classroom and found a sweet message Christi left me!

Oh, wow! The "Blogger" is finally allowing us to upload pictures. Sorry! The "Kodak Mom" in me cannot help it. Here goes!

Twas the Night Before School Starts

After story time tonight, the girls were tucked in bed. Prior to this, Christi shared with us a little poem she wrote last night when she stayed at Grandma Nonee and Paw Paw’s house. It’s so “Christi”. (This gal can’t wait for school to start and with the headaches and neck pain that have started and are requiring some pain meds, I’m so glad she’ll be able to attend her first day of fifth grade in the morning! It is a true blessing!)

“Twas the Night Before School Starts”
by Christi Thomas

Twas the night before school starts
And all through out back
Nothing was stirring except for the cat.

A rabbit was sleeping his eyes shut tight
Waiting, just waiting, in the darkness of night.

Buttercup was sleeping at the top of my bed

While visions of friends danced in my head.

I lie in my bed, awake wondering
How long time could take.

I thought about everything from apples to zebras
So I decided to see what time it was.

“Gee 10:00!” I said with a shout.
I again closed my eyes, my mind raced about.

Then I thought of my teacher her smile would shine
I thought of her quick, in fact, just in time.

Then I thought of my desk, all nice and neat
Soon I finally fell asleep.

Rally On!

Thanks to all of you who have gotten in touch with us after hearing about Rally Across America from the Thomas team! We have loved having so many people involved, and it has been awesome to meet you and hear your stories.

With 3 weeks left to go, we have 5 more big stops to make, and we would love to have you involved if you live in any of the areas where we will be:

*Iowa City, IA (Monday, August 21st): Visiting the Children's Hospital of Iowa, fundraiser lunch at the Coralville Outback Steakhouse from 12-2pm

*Columbia, MO (Friday, August 25th): Visiting the Children's Hospital, fundraiser TBAKansas City, MO (Saturday, August 26th): Event with Vineyard Vines (one of our awesome sponsors!)

*St. Louis, MO (Wednesday, August 30th): Visiting St. Louis Children's Hospital, fundraiser TBA

*Nashville, TN (Friday and Saturday, September 8th and 9th): Visiting Vanderbilt Children's Hospital (Sept. 8th), fundraiser lunch at Outback Steakhouse from 11-1 (Sept. 9th)

*Atlanta, GA (Sunday, September 10th): Party to celebrate and see everyone who saw us off on June 1st

We would love for you to join us at the local hospitals or at one of our fundraiser events. We will also be in these areas for a day or so before and after the events, and we would love to meet up with you while we are in town even if you can't make it to one of our events. Also, if you live in or between any of these cities and are interested in hosting 4 of us, we would be honored to meet and stay with your family.

Thanks for all of your help and support of Rally Across America - it has enabled us to share your inspiring stories along the way, have places to sleep at night, and raise $112,000 for Children's Oncology Group research since June 1st!!! Be sure to check out our website (http://www.rallyacrossamerica.org/), and please contact Claire (claire@rallyfoundation.org, 770-316-9124) if you live along our route and would like to be involved!

Thank you!! Claire Olson
Rally Across America Campaign DirectorRally Foundation

It’s Official

It’s Official: This morning I snuggled with Christi on the couch and told her it was the last day we had together of summer vacation. She hopped off my lap, in her silky lavender PJs, raised one finger up in the air and said, “I declare it Official Snuggle Your Kids Day”. She explained that parents should scoop their kids up and snuggle them every time they think about it today. I told her I would! (And I have!) She’s such a little snuggle bug and Shayne and I absolutely love it! I made one of her favorite breakfasts: heart shaped waffles with strawberry and bananas on top, yummy!

It’s Official: As of 5:00 today I have completed 94 credit hours at Ohio State and my first quarter of residency for my Ph.D. program. Ahhh! It feels like a huge weight has been lifted from my shoulders, even if only for three weeks until my second required quarter of residency (taking full time classes) begins. It was very intense and I’m happy Christi’s health allowed me to complete it. Christi’s battle with cancer has taught me many things- one of them being “Don’t put off chasing your dreams.” Another one is “Count your blessings.” I am incredibly grateful and will never be able to give enough thanks to all of our family and friends who so lovingly provided child care for Christi & Shayla this summer so that I could get to class and to study and to chase my dream. For fear of overlooking someone I won’t mention names, but I am deeply humbled by everyone’s assistance, love for and help with the girls throughout my endeavor. And a HUGE thank you to Shayne for his constant support (and funding) of my “hobby” as he calls it. I’m a lucky lady!

It’s Official: Eric & Alicia are on their way to our home (along with Allie & Ryder, their beautiful Golden Retrievers). Eric is going to take a look at my computer and see why I’ve not been able to upload pics to the blog. (My thanks to Eric for putting up all the pics for us for the past week.) Since I find great joy in little humor, I’ve prepared the exact same recipes that Alicia did for us two weeks ago up at their home since she so kindly gave me all her recipes. (I wonder if they’ll even notice! Christi and I think it’s going to be really funny! Well, there is that additional ingredient of oatmeal I accidentally I spilled into the Sloppy Joes instead of the blueberry cobbler, but that’s just a little bonus I guess!)

It’s Official: We heard back from Dr. Maris this afternoon, but since I do best living in denial I don’t think I’ll reflect upon the fact that he said we should be prepared to change course and that there’s only one clinical trial she’s currently eligible for but it requires the usual travel. He’s contacting MSKCC in NYC for us, but doesn’t believe they have anything for her either. He’s going to try to get her into that clinical trial slot IF one is available. Meanwhile, we’ll pray like crazy that this Fenretnide IS working and holding the cancer back until we really know come August 30th. We invite you to join us. It is a crucial time.

So instead of all that “doom and gloom” I’ll try to just reflect upon all the fun Christi had with her friend Eliana here at our home yesterday while her mom was busy getting her classroom ready. (Oh, it’s a nice feeling to have finished that up on Tuesday!) I can still hear their many giggles as they played games, role played, enjoyed crafts and ate my home made peanut butter cookies. Having Fun! Now that’s what a nine year old girl should be concerned about!

SATURDAY UPDATE: The wonderful "Webby" wasn't able to get my computer working either. No pics for a while while, sorry! Here's wishing you and yours a fabulous weekend! ENJOY!

In Memory of Jaret

With great sadness, I learned today that an amazing little man from the great state of Ohio was granted eternal life early this morning as his soul left Columbus Children's bound for Heaven. We had the pleasure of meeting and treating with Jaret (forever 7) in Columbus back in 2002, as he was diagnosed about 8 months before Christi and sadly lost all of his hearing early on as a result of the harsh early chemos. Jaret was able to enjoy two and a half years of remission before this evil, wicked and vicious beast came back in January of this year. I'm so saddened to have to share this news, but I know we can always count on Christi's Prayer Warriors to lift his wondeful family up during unbelievably difficult times, like this. When we were at CHOP with Jaret in April and again in May when he was back for treatment, he was the picture of good health walking around the hospital, sweetly ignoring the attention I was trying to give him. May God provide comfort to help through through the numbness and hole in their hearts which will always remain while here on earth. Jaret's website is: www.caringbridge.org/oh/jaret as I'm certain his family would appreciate a message of sympathy left in his guestbook. His parents are so sweet!

Deceiving

Last night's "Open House" was tremendous! I was so happy getting to meet a new class of excited students and Christi & Shayla were thrilled about getting settled in their classrooms too! Shayla was happy to be reunited with freinds she didn't get to see all summer and Christi was very serious, carefully putting everything in it's exact and proper spot in her desk. (This will be her first year without Theresa in her class and she has a very heavy heart about that.) Here is a picture with her very beautiful and very nice teacher (and a GREAT one too!). School can't start soon enough- for Christi! (Christi told me last night, "I thought she going to be an old teacher because you said she taught for many years, but then I saw her and she is a really young teacher." Precious!)

While the girls were occupied in the library today, I stepped outside to call the hospital to get the blood results. You know what they say about looks? Hmmm! Irionically, Christi looks and feels great; sadly, her blood counts disagree with that. Blood counts were drawn from her arm at the hopstial this morning. I wish I had better news. Platelets down again (a bit) to 58 and her LDH up (a lot in my opinion) to 401 (300 last week, ugh). Hgb. 10.4 and white 3.7 (both low, but okay). I spoke with NP Pat who said that she or Dr. Maris would get ahold of us yet today, but so far that hasn't happened. Shayne and I will do nothing to interfere with Christi's first week of school next week so we are planning on sticking to this schedule and not flying back to CHOP until Shayne takes her on the 29th for her tests and scans. We do not expect her to be able to continue on this Fenretenid any longer, and we are concerned that pain will soon set in; however, as Christi often says, "It may be impossible, but we can still hope, right?" So we'll hope and pray with all our might that she can stay on this chemo and that it is doing some good, despite the signs of her blood work.

To get my mind off of the news, I loaded the girls up and we took off to the city pool where they were having their "Free Swim Day" - yahoo! The girls swam with some friends from religion classes for five straight hours, only stopping to see what I had packed in the cooler. I read a ton for my class as well as did some pleasure reading. (Christi gave me an assignment: to finish the book we were reading together on my own while she did the same and then to discuss it with her later.)