"I'm Just So Sad"

Shayla was up at 4:15 AM to wish us off. (Boy how I love that sweet, adorable thing!) Christi woke up after a rough night with a numb face - mouth, nose, cheeks, etc. I picked up that dear, dear friend I'm not worthy of and off we went for the airport. As I drove into the village in complete darkness I wished it would have just been another sleeplessnight for me - a night when I drive in to that village to work in my classroom to help me cope. Unfortunately, we were not able to go to school today.

Sweet Shari was amazing help right from the very beginning - with Christi's first of many vomitting episodes for the day. (Car sickness just north of Republic.) Wheel chairs were needed at the airports as she not only looks horrible, but is oh, so tired. Shari couldn't believe the rapid decline from Friday either. It'shard to believe it's the same child - Christi Thomas!

Her counts were fine at 5.3 white, 150 platelets, 9.2 hgb. (low) with an anc of 2820. Nurse Practitioner Pat looked at her and said that she "Looks different than she did on Jan. 17th." When I asked her if her face situation could be anything other than cancer, she couldn't imagine that it was anything, but neuroblastoma. She did remind me that the one predictible thing about neuroblastoma is that it is unpredictible. She also told me that she "was worried." Christi's been so sleepy. Pat noticed she was whincing while eating because it was hurting so much. She complains of headaches, seeing double and keeps feeling "her bumps" which hurt to the touch.

Thankful was I to finally meet two of our wonderful support group families!! I've followed their little one's journeys with replased neuroblastoma for a long time as they captured my heart and touched my life!! Please lift them up in prayer! They are in great need too!! This disease is so horrible. I looked in their little precious eyes today and couldn't possibly imagine why they had to suffer with this beast - and their wonderful families; heartbreaking!

http://www.caringbridge.org/pa/carterfinger/

http://www3.caringbridge.org/ny/penelope/

No room at the Ronald McDonald House and no room at the Penn Tower Hotel I was getting nervous about where we were going to spend the night. An amazing rescue from parents who would walk to the end of the world to save their little princess from neuroblastoma, but unfortunately don't have that option, put us up in the lap of luxuary! (Never before have we stayed in a 5 diamond hotel; it's lovely!) I guess only the very best for our Neuroblastoma Princesses!! (Thanks, friends!! Your little one is soooooooooooooooooo blessed to have YOU!)

Then it was back to Wood Center to learn of the LDH level and to have her port deaccessed - no such luck, it's still accessed! I asked the nurse to stop and not remove her port until I heard the LDH number. When I heard it from Pat I truly was shocked - from a very high 1,150 on Jan. 11th to 3,508 today. I'm sick, absolutely sick. I have never heard of any child having an LDH that high. (NB friends, please email if you can give me some hope. 3,508!!!! NO!!!!!!!!!!!!!!!!!!)

This is the indicator of the strength of Christi's disease - truly spinning out of control at a very rapid rate. Pat told me that my plans should include NOT leaving Philadelphia as planned for tomorrow. They anticipate admitting Christi tomorrow to begin some high dose chemo in an effort to help get Christi "comfortable". (When I started my morning off yesterday asking Christi's teacher to take lots of pictures because I feared it was going to be her very last day of school, I told myself - oh, come on, she'll be back. Now I think I may have been right.) After sharing the LDH level Pat told me that she is now more worried than she was just by looking at her earlier and she told me she'd pray for us tonight.

The treatment will be decided (or told to me) at 10:30 AM with our meeting with Dr. Maris. He doesn't want to make a final decision until the 9:30 AM MIBG scan, but at this time he anticipates using a chemo cocktail of carboplatin and etoposide. He doesn't believe she has the 4-5 weeks needed to get into a trial - she needs something hard and something NOW. When I questioned Pat on this combo she told me that there "may still be a benefit". (Christi has never had a response to high dose chemo and she's had VP-16 before. The carbo would be new - it's also a drug known for creating hearing loss.)

Shari has been a GODSEND!!!! THANK YOU, dear Lord! I've been able to run and get food, call Shayne, cry my eyes out and - hey, update this blog tonight! All things I could not have done by myself. Oh, how I love her so!!

With Christi resting in the waiting room with her eyes closed (One is nearly completely sealed shut at times - the right one. The other is buldging forward as well, so ugly.) I knew I had to tell her what was up. After complaining about her eyes and walking with them closed and me leading her today I told her, "Christi it looks like the cancer is spreading all over your head and that is why you are swollen and hurting so much." The precious 8 year old panicked and said, "WHAT? WHAT?? What do you mean?" I explained the best I could. Later tears were pouring down her cheeks. I wiped them away and told her that it looked like we'd be starting high dose chemo again tomorrow and our lives were going to be changed again. I told her that all decisions would be made out of love for her and that we would all get through this together. With tears falling (hers and mine) I asked if she hurt and was in pain, or if she was sad. She responded, "I'm just so sad."

From the Second String Blogger

Hello from the second string blogger (Shayne). Angela and Christi are in Philly with our good friend Shari. At this time Angela has limited access to the internet so I will have to try to give a synopsis of todays events. They left the house at 4:30AM after a long restless night for Christi.

Monday evening was somewhat uneventful. We had an extended pre-bed ritual, Angela read and finished her bedtime story (Millions) then I read and finished my book (Captain Underpants). We hate to finish books separtately because we feel left out. After stories Christi and I layed in her bed and joked and giggled for about an hour, I fantasized about these symptoms being phantom disease or just an allergic reaction. Our little inside jokes are what I am going to miss most. One is that she kicks off all her covers and says "Daddy tuckey me" which I reply " I can tuck, daddy KenTucky". Then I ask all her stuffed animals if they are Dutch and Pekachu replys "No I'm Japanese" We don't really remember how they got started, however, it is part of the light hearted humor that gives our home its rythem.

Shortly after we settled in and fell asleep Christi began to complain of pain. I sat and watched as she rolled and tossed, holding her head, rubbing her eyes, sitting up and then flopping over. She was exhausted yet in pain. By 3 AM I knew we were in for a dissappointing trip to Philly, this could be nothing except full disease progression.

Angela, Shari, and Christi flew to Philly from Cleveland (thanks Lisa). My contact with Angela throughout the day was sporadic, however, I could tell that Christi was slipping. Before they left Christi reported pain in her jaw, eye, top of her head, and part of her face which was sort of numb.

After visually observing Christi's bumps and lumps then seeing that the LDH markers had nearly triple to over 3500 (420-750 normal) the nurse practitioner affirmed our fear. The disease is spreading like wild fire. Our decision was to consider whether we should treat or just take her home. No clinical trial could be arranged fast enough to have a chance of stopping her disease progression. Something needs to be pulled off the shelf ASAP.

So through the generous help of a fellow NB fighting family the girls landed in the Four Seasons hotel downtown Philly (not bad ehhh?) for the night while we await the MIBG scan tomorrow. After the scan results are known we will have the most significant discussion of our lives with Dr. Maris.

Another Day - Another "Lump"

The punch to the stomach "hit" early this morning - as soon as I woke Christi up. I asked her how she felt and she said her jaw hurt. I felt it; sure enough - another blasted lump! Sickening! It appears this is a now a freight train and I can't think of any treatment strong ehough to stop the beast now. I cried until my first class of students walked in. I'm so tired, yet I can't really sleep. Maybe tonight (Oh, I'm getting up at 4:00 AM to get to the airport, maybe tomorrow - oh, that will be the Ronald House - hopefully, and I never really sleep well there either. Hopefully, soon. I feel beyond exhausted - yet can't truly sleep. I'm so scared.) The only comfort I have right now is that she really feels super! Praise Him!!

The pic was taken of Christi with her sweet class at school today.

CHOP called today to inform me that again - for the third time, our insurance company is denying this latest clinical trial (Just like they did the last three types of treatment.) because it is experimental and unproven. (So, how is the cure going to ever be found?!) I hung up and immediately called my "Personal Banker". "SHAYNE!!!!! I have to go to a financial meeting tomorrow at CHOP to set up payment plans!" Thankfully, I came home from work tonight and learned he called them and is preparing the needed papers so I don't have to go to any meeting on finances. (Whew! Another great reason why I sleep with my banker!)

Christi's teacher told me today that during "Morning Meeting" she spoke about her cancer - something she rarely, rarely does. She said, "Tomorrow, I have to go to Philadelphia for Dr. Maris to tell us if this chemo is working or if we have to try something different. I don't want to miss Valentine's Day." (She did freak out for a moment while making the valentines this weekend and state that she did not want to miss her class valentine's party because it's her favorite party and she really wants to be there. Oh, why can't she just be a normal kid and not have these worries?!) When the classes suggested mailing their valentines to her, it didn't seem to satisfy her, Caroline said. (We should know soon; I pray she's back home and in school - time will tell.)

I am sooooooooooooooo incredibly grateful that my friend, Shari, is going with us tomorrow. While I wish we'd just be dashing off for a "girls day in Philly" or something fun, I do know that I am truly blessed to have such a great friend to be there with me as I fully expect to learn of the worst news we've experienced thus far throughout Christi's journey.

The photo was taken at school today.

Feeling Great - Let's Skate!!

Without a doubt "something bad" is brewing, but what is the extent of it and how does it impact the rest of this journey? I don't know - only He does. So we'll put our trust in Him and enjoy every minute of every day we have together! She is one awesome little gal!!!! We are so blessed with these precious gifts - Christi & Shayla!

The bumps (four total) are back in full force today. She woke up with a headache and with her left eye hurting in the middle of the night; therefore, Shayne and I were unable to go back to sleep, worried sick. I've cried more in the past week than I think I have in the entire three and a half years of this battle. I've tried to be strong for so long - years actually, but now I find myself crumbling to tears many times each day. Shayne and I cuddled on the couch in the middle of the night whispering to each other and trying to get back to sleep, but really couldn't. We love her to the moon and back and just wish we could trade places with her. This is so unfair! God has yet to buy into our plea bargaining.

I'm haunted by the "bumps" - about the size of half dollars, a bit smaller and most sore to the touch. (The newsest one at the top of her forehead - disgusting!) And her eyes just don't look "right". I can't really put my finger on it, but I know how this disease loves to attack the orbits of the eyes so that is my fear, and I think come Wednesday's MIBG scan we'll learn that I am not wrong. Around her eyes, they're "puffy" and a bit discolored and enlarged, yet the color of the eyes themselves still a beautiful white. What a doll! This disease is so ugly harming our darling girl like this; how I despise it. I've seen so many children lose their sight because of this horrible cancer and I hate to have her suffer through that too.

With temps in the 60s again - a pleasant Ohio January surprise, Shayne went out for a long afternoon run while Christi and I made peanut butter cookies. (Why does she love creating sweets, but not eating them? There goes that heathy eating plan of mine - again! Smile.) She also created some "Click-It's" sweet Peggy sent and played "Jump Start Advanced Fourth Grade" on the computer. She really feels great and for that we rejoice!!

Realizing that we might as well make the best of times while she continues to feel well she wanted to go ice skating with her friends so we called Theresa and Kaylyn to take them skating. Kaylyn was around and able to go so the girls had a great time together while Shayla took three of her first grade buddies! As you can see from the photo, the girls were darling trying their best to stay upon their feet (or I mean "blades"). Fremont's sweet Jennifer, Michele and Mrs. Lehmen also joines us there - so kind! Great memories, forever to be treasured!

I just sent "Webby" my journal entry and I'm certain Eric will have www.ChristiThomas.com updated with it soon. I'll try to update this blog from Philadelphia. As always, your prayers for strength and wisdom for Dr. Maris, Shayne and I, and for Christi to remain painfree and content are greatly appreciated. Lord, hear our prayers!

Power of Prayer

The little "bumps" are gone for today. How about that for the power of prayer?! Will they be back tomorrow? Who knows, but for today - we celebrate! (Unfortunately, the larger one right on top of her skull is still there, but it's not huge and she hasn't had a headache since Friday morning.)

Christi continues to feel very well and that makes the rest of the Thomas team feel great too!! Being blessed with such fabulous weather, the girls jump roped and rode their bikes outside. (Yes, that is Buttercup riding in the Burly trailer!) As Christi raced down the driveway without a jacket, in just a yellow sweatshirt (in January!!) it reminded me of another cancer fighter - only that one wore a yellow jersey. And you haven't witnessed anything until you've seen Shayne hopscotch!! What a great dad, what a great day! Speaking about her awesome Daddy, today Christi also created pottery with Shayne and the girls put on a darling puppet show for us.

I booked our flights to Philadephia this morning. My friend since kindergarten, Shari, will be going with me which will be great emotional support. When Christi was about 3 or 4 she used to have us call her "Christi Depinet" because she loved their family so much she wanted to be a Depinet too! (Always cracked us up!)

I'll pick up Shari about 4:30 AM on Tuesday and I should bring her back home no later than 11:00 PM on Wednesday night - that will allow Christi & I to return to school on Thursday morning. (Wouldn't want her to miss any more school than necessary! Christi loves being there and goes every day she possibly can - not too shabby for being terminal!) Christi will be examined by Dr. Maris, have blood work, her isotope injection and the dreaded MIBG scan on Wednesday. Her face is still puffy - while silly for sure, I'm still hopeful it's from her treatment over two weeks ago and her one eye still isn't "right".

New "lumps"

Well, burying our heads in the sand was fabulous, but we can't do that any longer - the reality is now facing us "head on". Yesterday after school I noticied Christi kept rubbing her head while she sat reading yet another chapter book at the kitchen table. When I asked her she told me, "Theresa found a bump on my head at school today." (Oh, talk about your heart dropping - hearing of a new tumor is never a good thing.) I asked her if it hurt and she said, "No, not the big one, but the little ones do." (OK - double whammy! What a shock!) With heart racing, I called Shayne and said, "I'm sick and you're about to be." We decided to keep an eye on it because she still feels incredibly well - laughing, playing, joking, staying up late and eating very well. (I wasn't able to sleep at all last night. As soon as I'd start to fall asleep, my body would jolt me back awake.) So, I just emailed Dr. Maris and we'll see if they want us to come to CHOP earlier to scan, change plans, etc. She continues to have off and on headaches, blurred vision and today lost her balance at my friend Shari's home as she brought her home from school after lunch with a headache.

Well - just in: Dr. Maris's email:

"I am very sorry to hear this. I am still hoping that this is nothing, but I think we should see her next week and set up a MIBG scan also. If things getbetter over the weekend, we can hold off, but regardless it sounds like we should do an interim disease eval.whether we go with cycle #2 or not. If we decide that the disease is worse, we will come up with an interim plan. I am available this weekend if something changes. Hoping for the best, but preparing for not the best, jmm"

Interview with the American Red Cross

Despite some off and on headaches and problems with blurred vision and sore eyes that come and go, Christi really does feel very well and is happy and full of energy. (Shayne and I are quite concerned and worried, but that goes without question, I guess.)

Today, during her recess break, she was interviewed at our school in my classroom by a women from the American Red Cross. Christi is going to be featured in an upcoming issue of "The Gift" which is mailed to 50,000 blood donors. Recipient of the Red Cross's highest honor - the Clara Barton Award, for volunteerism Christi happily chatted with the reporter.

"I wish my cancer would go away and I wish I had a Siamese cat." She also chatted about her best friends Kaylyn and Theresa and listed many favorite subjects when asked: math, science and social studies. This weekend she will write out her valentines since we don't know if she'll be back home for Valentine's day or not.

Response from Dr. Maris

It was a sleepless night! Now that I look back at her eyes & face during her treatment, I see that things are better now.

I called CHOP during my lunch break today and spoke with Nurse Practitioner, Pat Brophy who calmed me down about the LDH and the "eye thingy" after telling me that they studied the photos I sent of Christi's eye.

Sweet, sweet parents on our NBlistserv support group sent me pics of their children with their oribtal involvement and many "pointers". (THANK YOU!)

The following is the email from Dr. Maris which also makes me breathe again!
"Hi! While I will never pretend that these sort of things do not concern me, I think it is very, very likely that the LDH is directly related to theIL2. LDH is definitely known to go up after IL2. I also think her eyepuffiness is IL2 related. Obviously, if these things do not get better,we can consider doing tests before her next infusion, but I am veryhopeful that this will all go away in the next week or so. Give Christi our best wishes."

So we shall have her counts checked again next week and we shall pray that the LDH is normal and that her eyes "calm down". She had another great day at school and will soon be heading out to CCD (relgion class) which she just loves too!

Tuesday's Blood Counts - Soaring LDH!!!

Although her eyes are still "puffy" she had no complaints of pain before school today so thankful was I that Little Miss Christi returned for a second full day (Praise God!). After school she told me that her legs were hurting a little bit. (Yes, setting "fear" into this cancer parent's mind!)

Today's blood counts were drawn out of her mediport after school at the hospital. I thought all was well and she went off to her two hours of dance lessons - until I got the hospital's call while she was at dance lessons. My heart dropped when discovering the LDH number. I said, "Oh no!" They responded, "Yes, we've already notified Philadelphia."

hgb. 11.0
platelets 150 (Praise God - she's still in this fight!!)
ANC 2,100
white 5.1
LDH (The "activity of cancer cells" one) 908 (highest ever!) Normal 100-190. It's DOUBLED since her original diagnosis - 9/2002. My heart is heavy and my stomach queasy. I will hopefully hear Dr. Maris's thoughts by morning. I remember him specificially telling me not to be concerned if the LDH was elevated soon after treatment, but now it's Day #14. Ugh! I'm scared!
AST 61 (15-37 normal liver functions) I think we're okay here now.
ALT 58 (30-65 normal liver functions)

PHOTOS TAKEN: After school today (1/24/06) at the hospital and tonight at jazz and ballet class. Doesn't she look smashing?!! She FINALLY feels GREAT too. (1/16/06) at Grandma and Grandpa's in Florida where Christi was so happy that Nonee was able to sew the ribbons and elastic on her first pair of pointe shoes. Tonight at class, they learned how to tape their toes, to wrap them with lamb's wool and to tie the ribbons. Christi was THRILLED!

PRAYER REQUEST: That tonight's LDH number not be an accurate indicator of the aggressiveness of Christi's cancer. Lord, hear our prayers.

Praise God: A Great Day!!

Prayers were answered on Sunday! As the day progressed, Christi continued to feel better and better - only needing one nap. She wanted to go ice skating in Fremont Sunday night so we called her teacher (and our good friend) to see if she could join us. (Her teacher has many talents - and they include ice skating!) Unfortunately, Mrs. Smith couldn't make it, but that was probably best as once we arrived we learned that the rink was closed because their zambone was broken. (And the girls had so much fun with that name we were still rhyming words with it on the way to school this morning!) "The zambone started throwing out balongna."

Today was a FABULOUS day! Her eyes only hurt a little bit and no headaches she said. She attended a FULL day of school (without sleeping in Mr. Smith's chair!) went to Girl Scouts after school, sat through an hour of my cheerleaders' ball game waiting for Shayne to pick her up and then went to an hour long gymnastics class. Whew! Thanks for lifting her up in prayer!

Another brave little NBIV relapsed girl who just finished her second round of this same hu14.18 - IL 2 trial could really use your prayers. She's currently in ICU for problems which developed during her third day of the treatment. Her website is: www.caringbridge.org/tn/madelyn

I'll post tomorrow after her blood counts are checked. (I'm quite nervous about the LDH level.) With Christi now feeling better, so are we!! Praise be to God!!