Put a Little Island in your Life!

We've been gone since I posted last night, but wanted to come home tonight so we could post a comment on Nikki's blog on July 29th - her day of 24 hour blogging for the Children's Neuroblastoma Cancer Foundation (CNCF). She's done an amazing job and has raised nearly $1,000 thus far! We followed along via Shayne's cell phone, but weren't able to post until we returned home. THANKS, Nikki!

http://bloggingforchristi.blogspot.com/

As you can see from the photos, we had a lovely day! And my mom is doing ok. I knew today would be a hard one for her as well. It's hard to believe dad has been gone for ten years.


After catching an early morning "Jet Express" we arrived at one of Lake Erie's twelve islands (South Bass), rented a golf cart and had a lovely time at Put-in-Bay! (Chris, we looked for your sailboat!)

Playing in a shady park on the island.
The girls LOVED daddy driving them around in a golf cart all day, what a hoot!
"It may be impossible, but I can always hope!" (Christi patiently waits for a butterfly to land on her finger. Finally, it happened!)
While Christi sketches in the "Butterfly House" a large, blue butterfly flies by and is captured via my camera, amazing!
Cooling off in an incredible pool before getting pizza, hearing more from our latest family book- "Room One" by Andrew Clements and catching "the jet" back to Port Clinton.

July 29th: An Emotional Day of Rememberance

(Picture: Shayne and I joking around with my mom and dad on our wedding day, Nov. 1991.) Ten years ago today (1996) I received word from my mother that my dad had a heart attack while camping at our annual vacation destination - Silver Lake Sand Dunes in Michigan. Shayne and I quickly packed our bags and took off on the eight hour drive north thinking we'd spend some time with dad while he recovered at the hospital. Never did I imagine an hour later my mom would get a hold of us on our way to tell us dad didn't make it. Never have I forgotten the blood curling scream my sister yelled into the phone when I called her with the news. Never have I forgotten that days before his death: he turned 55 and he also ran a 7 minute mile. He seemed so healthy. Things can change so rapidly. Much has happened in ten years; yet I know through it all my dad has been right beside me every step of the way. Rest in peace, dad. I love you!

(Photo: In a hot air balloon after Shayne proposed to me.) On a happier note, sixteen years ago today- July 29, 1990, Shayne picked me up and I thought we were going to early Mass so I wore a dress. We were heading pass the Tiffin airport when suddenly he said, "Looks like they're blowing up a hot air balloon. Let's check it out." I knew we didn't have time, but didn't think anything of it. As Shayne stepped out of his truck, I saw him reach behind his seat and pull out a camera. (After dating for SEVEN years, I always said, "If you ever propose to me, please take a camera so I can show my mom.") What I also didn't know was that a week earlier he had asked my dad for permission to marry me. He came over to our house to visit and right away said to my dad. "Something might not be right in my truck. Could you go for a ride with me and listen?" It wasn't until July 29th (engagement day) when I put it all together. Then I remembered my dad returning and when I asked him if it was a big problem with the truck he responded, "I don't think it's going to be a problem at all." (Little did I know my engagement ring was in the glove box.) The balloon ride was incredible and oh so romantic. It was definitely worth the wait! Because my parents left for Silver Lake Michigan for vacation that very same day, we had a balloon / floral arrangement sent to their campsite which said, "Had an engaging encounter, call home!" Of course my dad knew exactly what had happened, but he kept his word to Shayne and never told. A week later when Shayne and I went to visit with them there was a beautiful cake with hot air balloons of frosting on it waiting for us all to enjoy together.

Three years ago (July 29, 2003) Christi had a complete resection of her tumor- in a tricky spots, by the wonderful Dr. LaQualia in NYC. I've always felt that dad had a role in Christi's birth since she was conceived about a month after his death. I believe he is one of Christi's MANY Guardian Angels. Earlier that summer Shayne and I had gone to Rome and prayed at the Vatican to become parents. (Now I joke that we never prayed to have a healthy child, hindsight!) Regardless, I like to think that my dad had some role to play. July 29, 2003 was a very scary time. She had some complications from surgery and she was absolutely miserable. We were so glad all of the tumor was removed and yet fearful and so far from home.

Today we are reminded of the many "Strangers Turned Friends" who have helped us along this journey. Our internet friend (Nikki) is "Blogging for a Cure" to raise money for CNCF in Christi's honor. http://bloggingforchristi.blogspot.com/

We have been so blessed.

Blood Counts

(Just tilt your head to the left, smile. SORRY! I can't recall how to try to rotate this, but I think the picture is so cute I still have to share it.)
(Photo: 7 days ago, spending the day with her sweet friend, Josh)







I see I was so excited to share the fact that the "bump" was nothing more than a very large and swollen (but not red at all) mosquito bite that I didn't post her blood counts on Wednesday. They were:

10.8 hgb. (low, but ok)
81 platelets (unfortunately, they've dropped again, hmmmmm)
4.7 white (fine)

The good news was that her LDH was 241 (Yes, elevated; however, a bit better than it was two weeks ago when it was 262). The LDH and the MIBG scan have been the most reliable markers of Christi's cancer. (Normal LDH is 100-190) We knew with progressing disease in her liver, skull, pelvis and femurs that it wasn't going to be normal by any means; however, we are thrilled it's not any higher. We know it could have been much worse!

What I thought would be an easy week for the children in YMCA day camp turned out to be anything but that. I'm incredibly grateful that my mom and our friend Sherri were able to be with Shayla during the past few miserable days of ear pain. I'm pleased to report that tonight she is happily playing and I'm certain the worst is over! Praise be to God!

Celebration in Order!

Truth be told, I haven’t been able to update the blog because I’ve been worried sick since we discovered a lump on Christi’s head this weekend. It just hadn’t budged all week. When I asked Shayne if he was scared and really worried too, he silently nodded yes. That horribly sick feeling from late Jan. was back and never left…..until I checked my phone messages on my lunch break today.

Shayne took Christi to her required check up at Dr. Vela’s today and Dr. Vela is certain that it is a mosquito bite on top of Christi’s head. Thank you for helping us pray that away. I’m so thankful to have a mosquito bite instead of a tumor! Praise the Lord! Dr. Maris told me very early Monday morning to get her to CHOP by the end of the week to get started on spot radiation. Thankfully, my schedule didn’t permit me to get her there this week or I would have, and Shayne responded to Dr. Maris, “I’m not 100% certain on this yet. Let’s monitor it for a day or two.” God is great and we celebrate His goodness!

Yesterday was Christi’s final day of the Fenretnide cycle and it was a wicked one for her. While she had been experiencing off and on tummy pains and "related issues", I was very surprised yesterday to check my messages at lunch and learn she was curled up in the fetal position on the floor of the YMCA. She had vomited, and when I got a hold of my wonderful mom she was with Christi at home. Thankfully, that was her worst day and it’s now over. She’s such a great sport! (That goes for my mom too! THANKS, Mom for all of your extra help this week!)

Rumor had it that Christi’s Cat Project won “first place overall small animals” at the fair; therefore, a trip to the fair was warranted. Not only did she receive a large blue rosette ribbon, but also a lovely trophy. Congrats to our friends, Kaleb and Sara for winning first place in Cat 2 and Cat 3!! They were both so helpful as Christi prepared her first 4-H project.

Additionally, both girls had their art displayed with the school art, thanks to Mrs. Nugget so we also admired it tonight too! Milling around the fair visiting was a lot of fun!

Shayla's art displayed at the fair.
Christi's art displayed at the fair.






Shayla has been complaining of an ear ache since Sunday so she also was seen by Dr. Vela today. It appears that her third set of ear tubes are still in place (YES!) however she has a horrible ear infection and is not feeling very well as a result. I'm certain the medicine will kick in soon.

Tonight we will sleep so much better- praising God for swollen mosquito bites!!

With gratitude,
Angela

Are there Bumps in the Road?

After a nice long hike through Collier Park along the Sandusky River we noticed Christi had several bumps on her head. Some are definately mesquito bites. Some are of very questionable origin and are most likely manifestation of her skull disease. We are (less than) patiently observing the spots for signs of progression.


So we don't know if this is a "bump" in the road or not. We will finish the first round of Fenretinide on Tuesday and will axiously await our scan date at the end of August. If pain erupts we may seek radiation therapy but that is all speculative at this time.



Did I mention she feels great!

Shayla at Grandma & Paw Paw's.

Shayla continues to amaze us with her general flexibility and empathy toward Christi.

Thanks for checking,
Shayne

Christi's Cat Project: Grade "A"

Happy with a blue ribbon!
July 22, 06 4H judging
Arriving at the Seneca County fairgrounds.
Holding Buckeye for the judging.

Thank you everyone for your help with Chrsiti's 4H Project "Cat One". It was a very enjoyable morning. (Well, after she choked down the Fenretnide at home that is.) Everything was so well organized at the fair that she finished her 4H judging 30 minutes before she was even scheduled to begin- wow! Impressive!

She really enjoyed talking with the judge and answering her questions. All of her marks were between "good" and "very good" with her highest marks in ability to express herself. Her written comment was "very informative". Christi was happy to earn a blue ribbon and a $3.00 premimum and I must admit I choked up with tears when I saw how happy she was to receive it from the judge. (Then she really enjoyed walking with Theresa and pushing Buckeye all over the fairgrounds visiting and looking for her friend Kaylyn.) Likewise I was pleased to be able to visit with many students, parents and friends this morning.

Thank you to 4-H parents and advisors everywhere! After witnessing you in action today, I saw how hard you work! Your reward in Heaven will be great!

Weekly Wrap Up

Many thanks to all of the Angels on earth who have so lovingly provided child care for Shayla and Christi this week: Aunt Marty, my mom, Cousin Aaron & Tricia and the Brigg's family. The Thomas team remains full of gratitude to you all!

Last week, I completed one of my three OSU classes I'm taking this summer, and today I finished the one which was requiring me to be on campus MW&F from 8-11 AM. Ahh! I drove home from campus feeling like a big weight had been removed from my shoulders. On Monday at 8AM I'll get to start teaching my own grad class at the wonderful Heidelberg College, so very close to home! I'm incredibly honored and humbled to have this teaching opportunity at the Berg.Ending my summer work today with one great kid!!

Now to the reason you're checking in: Shayne received the fax of the printed MIBG scan results and it was just another kick in the pants yesterday. Dr. Maris was so right! While my eye couldn't see it in the scanning room, she has had progression in her liver, skull, pelvis and legs. Oh, this just made me sick to hear this news. (I kept telling myself Dr. Maris was wrong; once again - he wasn't!)

And the oral chemo (Fenretnide) which Christi said smelled like cat food, but she was able to get it in her has not only become a challenge to ingest,but it's also causing her to have tummy pains, cramping and bathroom issues- none of which were to happen. Dr. Maris said, "The biggest side effect from Fenretnide is nothing." Well, I'm not about to tell that to Christi. She was curled up in horrible pain last night, running to the bathroom and having a hard time getting comfortable. At one point I just sat on her bedroom floor and cried as she was calling out in her sleep, "I just can't take this any more," and Shayne was out of town.

The "yucky medicine" is not the pretty white powder like I imagined, but a neon yellow mixture. (What does that tell you? YIKES!) Nearly gagging and tossing her cookies, last night I asked her if she could take the morning dosage if I could put it in capsules- even though there'd be a lot. She replied in between cries of pain, "That would make my day." So last night I spent about 45 minutes getting what turned out to be 27 capsules stuffed with her chemo. This morning she was able to swallow 14 of them in thirty minutes, but then I had to get to class. Thank God for Rachel who managed to get the rest in her, even if her kids had to be used as bribes! (Thanks, Josh!)This is just half of the day's medicine she has to take.

Today her stomach felt much better and she had a wonderful time playing with her friend. I don't know how challenging tonight's chemo will be to get in her, but she's already requested that I put it in 27 pills instead of trying to drink it so I'd better get busy preparing that. After tomorrow's Fenretnide challenge in the morning, we'll be off to the fair for her 4-H Purr-fect Pal's Cat Project Judging. She's already put her poster and her cat books in the van and she's brushed and brushed Buckeye. I hope she has fun.

On another note, a sweet Christi supporter is doing a 24 hour blogging event in honor of Christi to raise money for CNCF (Children's Neuroblastoma Cancer Foundation). I thought the date she's selected to do this is very unique since July 29th is the 3rd anniversary of Christi's sucessful complete resection at MSKCC in NYC by the wonderful Dr. Michael LaQualia. (July 29, 2003) Sadly, it's also the tenth anniversary of my father's sudden death at age 55 (July 29, 1996) and also the date (July 29, 1990) when Shayne, after seven years of dating took me up in a hot-air balloon and proposed to me, much to my surprise. Nikki's website is: http://bloggingforchristi.blogspot.com/

LAURA & DAVE: Just in case you happen to read this, I'm so sorry! You'll never ask me to pet sit again. Your dog is fine; however, tonight I discovered the orange fish was floating. Someone else is answering your cell phone so I can't even tell you. I didn't know what to do and if you'd have to have a funeral for the fish or what not, so..........it's in a plastic bag in your freezer. Swim in your pool? You don't have to ask us twice, THANK YOU!

Photos from Philly

It's nice to all be together back in our own home! Here are the pics I promised:

A tough time waking up from anestesia yesterday.
An incredible treat after a very rough morning (Thank you UPenn Animal Hospital friends)!








CHOP on top! (Christi in the atrium at Children's)
A happy UPenn squirrel eating a cheese puff. "Christi, you made it happy," I said. "Mom, wouldn't you be happy eating a cheese puff the size of your leg?" she responded back with her giggle.
Dr. Maris literally pulled Christi to his office today as she was teasing him and didn't want to stop playing "Guess Who" (a board game). I heard giggling all the way down the hall, but never dreamed Dr. Maris would be pulling her (still in her chair)into his office laughing himself. What a hoot! What a team!

Homeward Bound

The work is now complete and we are enjoying Christi's favorite place at CHOP, the gorgeous library. We have a few hours to kill before our flight home so I thought I'd update with the news.

unfortunately, the scans were not as we had hoped and prayed. Since the four weeks have passed, she now has increased cancer in her skull and liver. (I personally felt the MIBG scan remained unchanged, but Dr. Maris didn't call it that way.) The areas of disease in her: legs, ribs and pelvis remain the same. The CT scan shows new nodules in her lungs; however, that is most likely due to infection of some sort and should work itself out. (It didn't show up on the regular Xrays.) It appears that her disease is now back to where it was before she went into the BSO/LPAM trial in mid-May; not the place we prayed she'd be. "It definitely wasn't a homerun for Christi," Dr. Maris said regarding BSO/LPAM. Surprisingly enough, her bone marrows were the best they'd been in a long time: "negative biopsies and positive aspirates (less than 5% each side)". Like Dr. Maris said however, those results most likely aren't accurate and won't be conducted when she's schedule to return in August. The MIBG scan shows she has a lot of disease and bone marrows just grab a small sample in a large ocean.

Dr. Maris sadly informed me that the options for Christi are very limited. Chemotherapy hasn't worked, radiation hasn't worked, antibodies haven't worked, etc. He feels that because she is still feeling so well we should ride this train as long as we can until the fork in the road comes and there will be a fork in the road. Putting her through more high dose chemo isn't going to give her a good quality of life and is very hard on our family so he believes continuing with the plan to start Fenritnide is the best option, even if the responses aren't promising. He also informed me that even though the word on the street is that this new powder formulation of Fenritnide isn't working, they are seeing some responses.

The Fenritnide was supposed to arrive yesterday; however, at 4:30 PM Tuesday it still wasn't here. (I learned the plane broke down and it was delayed; ugh.) miraculously, it arrived this morning so she had her first dosage and we can fly home tonight. Christi said it smelled like cat food, but it tasted okay. (Mr. London, Christi said to tell you to make that a "negative one" on your "yucky medicine scale". I have the large canister of the drug packed on ice from the pharmacy (airport security ought to love me today, smile) and I'll give her another dosage when we get home tonight. Thanks for your continued love and prayers. I'll post some pictures from this trip tomorrow.

Shayla - Mommy and Christi will be picking you up at Grandma and Paw Paw's before bedtime. WE LOVE YOU, sweetie!

Day Two Down

It was a long seven hours spent at CHOP, but finally Christi completed all of her testing procedures scheduled for Tuesday. She continues to amaze me with her incredible ability to read for hours in waiting rooms, never losing her patience. (I managed to get a lot of reading done today too, but I don't exactly have her patience as I found myself doing a lot of foot tapping today!)

Walking back to Ronald in the intense heat (99 degrees today) we made a plan to stop some place fun every two blocks to cool off, so we did! (Newstand for her Cheetos, shade tree to feed some Cheetos to the squirrel, Starbucks for organic, fat-free vanilla milk, Barnes & Noble for a new chapter book- which she's nearly finished & 7-11 for a Slurpie.) She wasn't hungry for dinner tonight (Imagine that!) so we talked about walking down the street to Chili's later and most likely will do that for her supper.

She continues to feel very well. Tomorrow the sweet Mr. Grant will pick us up at 8:30 AM and she will have her 9:00 MIBG scan back at CHOP. Then it will be directly to Dr. Maris to learn of the results and to begin the Fenretnide. Sadly, I do not hold any hope in this drug; however, I'm continuing to pray with all my heart that it helps keep this beast stable against all odds. We have a 4:30 flight back home which should have us picking Shayla up from mom and Joe's about 8:30 PM, if all goes as planned.

So Far So Good

My alarm went off at 4:30AM. After opening my eyes, I took one last long look at beautiful Shayla who was still soundly sleeping beside me. Even though I know she is in the best of care while I am away, it just stinks leaving her time and time again. She is a wonderful kid! I love and miss her so much!

Our flight was great. (We even flew right over COSI just after take off and we looked for our crazy friends on the roof, but didn't see them!) The train ride into the city early this morning was great too. As always, the amazing nurses at CHOP quickly took Christi's vitals, accessed her port and collected her urine. She had a physician's exam and was put to sleep all by 10:00 AM. (Go, CHOP!) I took off to the Au Bon Pain to get her favorite "after bone marrow lunch" and returned before she was finished with the procedures. She had a hard time waking up today. The anestesia doesn't always set well with Christi and today was one of those days. (Can you say, "Dr. Jeckle & Mr. Hyde"?) While she was sleeping off all of the narcotics and I was a wee bit stressed, I ran off to catch up with the London's and to see how Princess Peneleope was doing inpatient. Christi was much better after a little more sleep.

Thankfully, our sweet friend from the UPenn Animal Hospital called and said she had time to squeeze Christi in; theefore, when Christi recovered, we went out. With the temperature pushing 100 degrees, I pulled both of the suitcases during our walk. (I could see the blood soaked gauze pads sticking out of her jean shorts visually reminding me of the torture she just endured. At that point I never would have even considered asking her to pull just one suitcase for any of those uphill blocks. She just had six inch cannisters inserted into her pelvic bones and bone marrow extracted; what a trooper! This kid is amazing! )

Her time at the Animal Hospital was incredible- and gave her some good information for her 4-H Cat Project judging on Saturday. (I mean where else can you see a chemotherapy cat, a cat in ICU and a cat in the emergency room. WOW!) Thanks, sweet Animal Friends at UPenn!!

We were blessed again today by receiving a room at this incredible Ronald McDonald House where I'm updating her blog. Today's blood counts were a bit disappointing, but I supose not unexpected:

Platelets: 88 (dropped, UGH!)
Hgb. 10.8 (low, but fine)
white: 5 (low, but fine)
ANC: 2,578 (fine)
LDH: 749 (normal, but the normal range is 420-750- and it was down 100 points four short weeks ago)

Tomorrow is a full day of tests and procedures which again will not permit her to eat anything all morning: CT scan (head, chest, abdomen, and pelvis), X-ray, MIBG isotope injection and this 12 hour urine collection will end then, yipee.

Thanks for checking in! We're doing GREAT! God bless you!

Good Times

Ready to Go

Due to high temps (yesterday high 80s and today in the 90s) we went to the lake to cool off. (That would be a GREAT lake, Erie, it is!) The girls had a wonderful time enjoying each other’s company in the complex pool at Grandma Nee Nee’s and they also rode with Daddy on our jet ski, very fun!

Unfortunately, the temperature in Philadelphia is to be 100 degrees tomorrow and 97 on Tuesday. I had to break the news to Christi that we cannot possibly go to the zoo as she’s been planning to sketch there. She suggested sketching at the art museum instead which would have been great, but when we checked their website we learned they are closed on Mondays. Don’t worry, we’ll find something fun and cool to do tomorrow afternoon.

In just a bit we are heading down to Aunt Marty and Uncle Jeff’s as Shayla will be in their care. It will get Christi and I closer to the airport since we have a very early flight tomorrow. Unfortunately, Aunt Marty and Uncle Jeff were involved in a canoeing accident today and Marty had to get stitches in her head at the hospital. That amazing and incredible aunt of mine still wants us to come tonight- and Shayne will help Jeff try to find their canoe. Don’t worry Aunt Marty: I’m bringing watermelon and strawberry pie; that will be the perfect medicine! (smile) I LOVE YOU!!!

Today I received our pics back from Cedar Point so I wanted to share them. (UGH! I cannot get them uploaded, sorry! Maybe Shayne will read this and load them for me.) Additionally, I have been thinking in recent days how Christi has received so much prayer for healing over the past four years and that many pray for Christi like she is their own child. That simply moves me to tears. Because of the powerful prayer warriors, Christi has been touched powerfully. We continue to put our faith and hope in Him. We know he is with Christi and he is our salvation.

PRAYER REQUESTS:
*That we do not experience travel delays which would prevent Christi from making her tight treatment schedule.
*That Christi wakes up from tomorrow morning’s anesthesia.
*That we are able to get a room at the Ronald House and avoid hotel expenses.
*That her disease is not worse than four weeks ago which would prevent her from getting this new chemo (Fenritnide).
*That even though we do not know of any other child who has experienced a response with this new oral chemo, Fenritnide, we pray that it will keep Christi’s cancer stable allowing her to live a good quality of life and to extend her time here on earth.
*That all of those suffering and experiencing crises and turmoil receive the blessings of strength and comfort. Lord, hear our prayers.

We Didn't Run Away with the Circus

Sorry for the delay in updates! We're still home!! All is well and Christi even finished her 4H project early, praise God!! She is still feeling great; I’ve just been beyond busy in recent days. My deepest thanks to the wonderful Arnold & Grine families for taking care of the children while I was in classes this week. The girls had fabulous days in their care!









Thursday found Shayla spending a special day with her great friend, Amber (Happy Birthday, Amber!) while Christi had the opportunity to take two friends to Cedar Point (Thanks for your generosity, dear Missy!!) While at “the Point” we met up with a beautiful woman from Michigan named Chris. She has been a faithful supporter of Christi’s for many years so finally they had the chance to meet in person. Chris sent her teenage boys off on their own and she hung out with us. Not only was I thrilled to get to meet this sweetheart in person, but I think the three girls liked the fact that I wasn’t eavesdropping into their conversations too. Kaylyn, Theresa and Christi were all giggles and smiles the entire day. It was truly magical! (Pictures coming soon.)

Last night the circus was in town so we ventured to it. Once in the grandstands I said to Christi, “The last time I went to a circus, I was locked inside an elevator for an hour and a half with a very special person before I could get out and go to the circus.” She didn’t miss a beat. She responded, “Me too.” (How could one forget the time we got stuck in the elevator at the Ronald McDonald House when we lived in NYC back in March of 2003.) Regardless, the circus was cute and the girls absolutely loved it.

Tomorrow we will overnight with Aunt Marty so that we’re closer to the Columbus airport. (Our flight to Philadelphia is very early on Monday morning.) My next update will be from Philly. God bless you and thanks for checking in!

I will gladly pay you tomorrow........

For four years I have ambled through the labyrinth of medical billing. Occasionally, I would hit a dead end and have to retrace my steps. Mostly though, I just plodded ahead paying when I needed to pay-satisfying the various invoices that I met along the way. Several significant accounts became delinquent recently when we discovered that our secondary insurance had been improperly billed and they had begun taking money back from providers. While we knew that this was going to get resolved in due time it was going to take a great deal of patience and persistence. It seems I am somewhat better endowed in that latter than the former.

Tonight, after supper, Christi asked me to sit with her at the kitchen table while she made twirly cats for my friends at work. As it turned out I had a mindless task to complete for work, so, we were peacefully sitting at the table when the phone rang. I answered only to discover that the caller who dared to disturb my quiet time with my daughter was a collection agency! The same agency that I called two months ago to say "There has been a billing error, sorry we didn't catch it, here is the correct information". The same collection agency that called last week to which I responded "The insurance company has paid that claim please check your system for payment". The same agency who was now telling me that it was not their job to prove that I owed something but that it was my job to prove that I didn't owe! ahhhhhhhhh!!!!!! Well Christi has no idea that there is any financial ramification to her treatment. It has never dawned on her and hopefully never will that medicine costs money. Consequently, I did not want her to hear this increasing heated conversation. So I stepped outside to explain my logic to the fella. "I can't pay something that I no longer owe" To which he just kept saying "prove to me that you have satisfied this obligation". Desperately and more loudly I asked him "to please check his file". "That is not my job and we will keep calling until you prove that you don't owe this anymore" was his only reply.

Does anyone remember the lyrics to the song Coward of the County? "Twenty years of crawling was bottled up inside him..." Well four years of patiently dealing with the frustrations associated with medical billing had finally overwhelmed me and I let this guy have it in loud vulgar terms. I told him to go violate himself several times then hung up. My first thought was-I wish I knew more languages so I could have told him that several times in different languages...my second thought was that the whole neighborhood heard me. (sorry)

As I slumped back into the house a very nervous Christi asked me who had called. I said that it was kind of a funny story and she wouldn't really understand. She responded that she heard it all and didn't think that it sounded funny at all....

Shayne

Fuzz, Fur and Fingernails

Yes, as some of you emailed and blogged to us, Christi has indeed sprouted some fuzz. “I like my fuzzies,” she has giggled to us. (The fenritnide chemo is low dosage so she will not lose her hair while she’s on it.) As for being bald, she boils it down to this: “Little kids think I’m a boy and big kids ask me if I shaved it off.” I’ve decided not to dress her in skorts or anything pink for her special outing on Thursday with her friends because with this very, very short "hair cut" she really does look like a boy now! (You’ll never believe what she’s come up with for her Halloween costume, but I’ll share that later! What a hoot she is!)

Today was another wonderful day spent at home with the furry things. Christi worked on the painting she is creating which will be put above our couch.The social Miss Shayla played with a little girl friend she just met yesterday for many hours this morning at our home and then she spent the entire afternoon playing with the sweet neighbor boy.

While Shayla was busy playing with younger friends, Christi worked some more on her 4-H project. We took Buckeye to the vet for her nasty eye infection which has gone on for months and months. It appears it's here to stay, ugh!

After I complained to Christi that my hands and fingernails were a mess after picking off all the wallpaper in the bathroom a few days ago, she offered to paint my nails; therefore, I agreed! (This was the first time I let her use nail polish and she did a great job for a nine year old; plus the hand massage was delightful!) After a long couple of days, our bedroom paint is nearly dry; it’s amazing what a fresh coat of paint can do to lift your spirits! (I’m embarrassed to admit it hadn’t been painted for 18 years. Christi and I love it. Shayla, who doesn’t like change in her life has declared, “I’m never going in there again!” (We’ll see what happens the next time she’s scared. Hee hee)

Thank you for your prayers, love and support! It’s hard to believe we are approaching our fourth straight year of trying to kick this awful disease. Good friends, family and strangers continue to see us through and we are filled with gratitude! May God richly bless you all!!

Loving a "Plan"

Holding Buckeye, wearing her "cat" shirt and working on her 4-H project today.



PRAISE HIM! We have a plan! (Don’t know if it’ll work or not, but there’s just a good feeling about knowing what we’re going to at least try next!) As soon as I got home from OSU this afternoon I zipped Christi off to the hospital for her blood counts. An hour later we had the results and when her platelets were “96” I knew we were back in this fight! THANK YOU, PARTNERS IN PRAYER!
I emailed CHOP and could only wait for 45 minutes before I had to call and make certain they received my email with the numbers (smile). They did, and were in the midst of plan development. They told me the next step would be fenritnide; however, she didn’t qualify for it because she just had a stem cell rescue and you have to be 12 weeks out of that in order to get this drug and she’s only 6 weeks out. (ugh!) Because Dr. Maris feels this may benefit Christi he went to bat for her and she is now getting it on a “compassionate release” basis (just like her last treatment- BSO/LPAM). Of course this concerned me and led me to ask, “What is the dosing level going to be?” Well, they were hesitant and finally I learned only dose level “2” of the oral chemo, or we could wait a few more weeks and then have it be dose level “3” after it’s determined to be safe. (There is a 30% difference between dosing levels.)

Pat called back an hour later. Dr. Maris doesn’t believe she can go two more weeks without any treatment so he wants her to start this new chemo on Wednesday, July 19th. (If it comes in on time. It’s being ordered “rush” as I type.) It will be dosing level “2”, but after one cycle they will bump it up to level “3” pending there are no toxicities and that is not at all expected. Therefore, Christi and I shall fly to Philly early Monday morning as she has to be in anesthesia around 9:00 AM for her first of many tests. (The tests are to wrap up her BSO trial and in order to get clearance for her new chemo attempt.) Tuesday and Wednesday will be more tests and if all goes as planned, we will fly back to Columbus Wednesday night. Fenritnide is an oral chemo drink that is supposed to taste better than the irino she drank (and “tossed” on the floor) much of last fall. I do not know of anyone who’s experienced success with this oral attempt, but she’s too strong not to try to keep fighting. She will drink it for seven days and get fourteen days off before repeating the cycle again, pending no pain or signs of rapid disease progression. We should be able to experience a normal life while she is doing this treatment which of course means normalcy for all of us especially Shayla. Christi and I’ve gone over all of this and when she got up to leave she gave me a high five (God, how I love this amazing, spunky kid!! Thanks you for blessing me with her!).

Prayer Request: That the new upcoming treatment works to reduce Christi’s cancer while giving her a good quality of life. Thanks, friends!

BLOOD COUNTS:
LDH: 262 (100-190 normal, measures tumor activity) *This rising number had the nurse practitioner respond, “Time to get something started! Glad we have a plan now!”
10.8 hgb. (low)
6.4 white
96 platelets (low)

Meanwhile..........back to the 4H (cat) project with Christi working away at the kitchen table!

An Update for the Christi Crew

Sorry for the delay. All is fine right now!! Christi continues to feel very well; praise God! I was planning to update tomorrow when I have Christi's blood count results; however, pulling up my email after being away for five days and reading many messages of concern, I see I must update the blog now for the worried Christi Crew Members. Here goes:

All is well! We've been "out and about". The girls and I stayed overnight with my sister in Cincinnati for a couple of nights. We were treated to Kings Island (located minutes from their home) and then we drove back north where the girls spent two nights with their Grandma Nonee and Paw Paw. Meanwhile, Shayne and I enjoyed some much needed couple time at the lake with Grandma Nee Nee.

Unless Christi's blood counts are high enough and a clinical trial is open, we shall be home all week. If magically her platelets are "75" and a trial is open, I hope to be on a plane to Philadelphia tomorrow night. (It's highly unlikely that all of that will come together, but I'd love nothing more!!) She continues to feel very well, but I know the disease is brewing and I want to get some treatment in before it takes off again. Time is not on our side. Prayers for platelets are very much appreciated.

Thanks for your love, concern and support! Below are pictures of the four cousins at Kings Island last Thursday:

Perfect Ending to a Perfect Day at Kings Island!
Yet another roller coaster ride with Shelby
Ashley and Christi look "scared", hee hee! (Christi rode "The Vortex" TWICE!)
Brave cousins take on the Rapids

Happy 4th of July!

GOD BLESS AMERICA!! Ready or not, here I
come!
Lovely Lake Erie - July 2006
"You name it, we'll build it!" declared Christi to others who would walk by and admire their work.
Grandma Nee Nee and the girls build sand castles until the sun goes down
Christi, the Sand Flea
Nee Nee helps Shayla try to catch a fish (no luck).
Captain Christi can't steer now, she has to finish her chapter first.
Grandma and her girls
Christi feeds a camel.
Shayla giggles while feeding the animals.


Loving the free rides

On our 3rd straight day of going to "African Wildlife Safari Park" Shayla rides the camel. (We love that zoo pass good at 200 zoos in America, thank you!)






Four years ago today we were in Dallas, Texas along with Shayne's Dad. I was there for a teacher's meeting. That night we went back to our good friends' home for the evening. The kids played in their backyard and watched the fireworks; it was precious. Today I'm missing old times and sending tons of LOVE and PRAYERS to the wonderful Baker family.

We just returned home after spending five wonderful days at Shayne's mother's apartment. (Shayne drove back to work, but the girls and I stayed the whole time. We are so blessed!) I'll update with some pics now.

CAT SURVEY OVER. Christi and I were literally stunned at the overwhelming response to her cat survey question. There must be hundreds of cat lovers in cyberland! In less than 24 hours she received over 85 emails. I think she has enough data to continue on with her project. Thanks for sharing your stories with us and for richly blessing us with your love and concern! You are amazing!

HAPPY FOURTH OF JULY TO ALL OF OUR AMERICAN FRIENDS!