Support For Christi Thomas

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

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Tuesday, January 31, 2006

"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."

52 Comments:

At 31/1/06 9:26 PM, Anonymous Anonymous said...

Just as over the past 3 years and 4 months, many, many prayers through my tears...

 
At 31/1/06 9:33 PM, Blogger HeatherB said...

My tears are flowing and my heart is hurting with you tonight. I just don't know what else to say but that.

Please know that I love you dearly and will be praying oh so hard for comfort for Christi. I pray the new chemo will get her comfortable.

With love, prayers and tears,

Heather

 
At 31/1/06 9:37 PM, Blogger Kait said...

There are no words Thomas Team, only tears and prayers.

Angela, if you end up staying in Philly admitted, PLEASE email me if you need ANYTHING. We have some Delta Vouchers from a trip to Disney Last Summer (400 Dollars) if you need them to bring your family to you, email me at gabbyamanda13@yahoo.com, because I would love to share them with you at this time of need. It's the least I can do for your family. If you need more support, I'll come to Philly myself. And if Christi is admitted, please post an adress to send her cards and packages, as I have something special for her and Shayla I would like to get to you as soon as possible. I will email this information too.
Love and Prayers through the tears,
Kaitlin

 
At 31/1/06 9:42 PM, Anonymous Anonymous said...

My heart breaks for you! Lord send Christi more time! Years! She has so much to do for this world!

Megan
Who is sad too! :(

 
At 31/1/06 9:44 PM, Anonymous Elizabeth in Washington said...

Praying for a miracle. Praying for comfort. Asking the Holy Spirit to intercede because I am so heartbroken for you that I don't even know what words to use. Lord have mercy.

 
At 31/1/06 9:46 PM, Blogger Erica Kim said...

Dearest Thomas Team, I have been a silent prayer partner for 4 years when I learned of Christi during my teacher prep at BGSU. Please know that God is being overwhelmed with prayers for you and yours from Pickerington and Lancaster, Ohio. I ask for Him to wrap his loving arms around you and give you the support and comfort you most need at this time. And for strength to make the decisions that face you in the upcoming days. Our God is Good, and He will be faithfull to those who love Him! Praying for a miracle for your beautiful and brave princess!!!

 
At 31/1/06 9:54 PM, Anonymous Rachel (from Ky) said...

I struggle through tears to find the right words to say and of course... there just aren't any.

Christi, you are an AMAZING girl, with a heart of gold and you are so very loved.

Angela please let everyone know if there's anything at all you or Christi need, Shayla and Shayne too! We all want to be "here" for you especially since we can't be there for you.

Many, many Prayers
We Love you Christi!
~Rachel

 
At 31/1/06 10:02 PM, Anonymous Anonymous said...

You are in my prayers heavily tonight. Go Christi, go!!

Kristi Johnson
(Brock's Mom)

 
At 31/1/06 10:08 PM, Blogger Anna said...

My heart is breaking and asking God "why????"

So sickening that her life has to change AGAIN, all due to the filthest word in my vocabulary: neuroblastoma.

Many prayers,

Anna

 
At 31/1/06 10:09 PM, Anonymous Anonymous said...

I'm just so sad, too, Baby!

 
At 31/1/06 10:11 PM, Anonymous Anonymous said...

I am heart broken. Is there any fund or account set up where we could send money to help send Shayne and Shayla to you? So much for a little girl to take in, even one as strong and beautiful as Christi. I don't know what to say except I am praying for you all.

Chemo Angel Holly

 
At 31/1/06 10:14 PM, Anonymous Candy Belanger said...

This is all just so unfair. I am praying for Christi's discomfort to subside tonight. You will be in my thoughts throughout the day tomorrow as I know it will not be an easy one. Please give your little fighter a hug for me and tell her that she's my hero:)

Dear Father, send your angels to surround the Thomas family and give them the strength they need to face this latest trial in their lives. Help them feel the love that is going out to them tonight. Please lay your hands on Christi and ease her pain and fear. Bring her complete healing here on earth, Lord. Through Jesus Christ, I pray.

 
At 31/1/06 10:21 PM, Blogger momangel92 said...

Thomas Team...tonight my heart breaks & my tears fall for all of you. My family is praying for you. JESUS took stripes so that we would be healed...I am claiming that healing for Christi in HIS name.
Gods many blessings & Lots of Love,
Traci (prayers from Norwalk)

 
At 31/1/06 10:24 PM, Anonymous Linda & Pat Connolly said...

Dear Thomas Family,

We were so very sad to read the latest update.. no words are adequate. We also experienced the same sudden LDH jump with Ryan.

Just wanted you to let you know that we care. Keeping Christi and your family in our thoughts and prayers.

Sending many hugs and much love,

 
At 31/1/06 10:30 PM, Blogger Jennifer said...

I was JUST with this beautiful little girl...getting tight hugs and sweet smiles. I'm speechless.

Lord, Christi has touched so many people in the past 3 years, I can only imagine the ways she could continue to do so! The possibilities are endless! She has people pulling for her all over the US and even a few other countries. What a girl! Her strength and determination can get her anywhere.

I admire you Thomas Team. This battle you have been fighting for so long has given me such strength and faith. I love you and hold you so so close to my heart.

Lord, hear our prayers....

Love, Jennifer

 
At 31/1/06 10:31 PM, Anonymous Eliza said...

I will not give up hope until all hope is lost.
I can't find the words. There are no words to say.
Just love and caring and prayers and hugs from my heart. Wrapping you all up in a protective blanket of love. Praying for no pain. Praying for answers. Praying that there is another explanation.

Sending you a rock large enough to lift you up so that you can see the horizon where the sun and moon live and where hope lies in wait for the next day.

Sweet dreams.
With much much love,

 
At 31/1/06 10:37 PM, Anonymous susie said...

Tears can't help but shed down my face, i have never met your family, but i am praying even more tonight and God give you strength.
susie

 
At 31/1/06 10:37 PM, Anonymous Anonymous said...

God Bless You Guys.
God Bless You Christi!!

 
At 31/1/06 10:37 PM, Anonymous Mary Hollway said...

Angela and Christi....Hoping that the chemo will do wonders!!

I just vcan't believe this is happening so fast!

Our Love, Our prayers are constant!

Mary and Molly Hollway

 
At 31/1/06 10:38 PM, Blogger Sarah said...

Dear Thomases,
Words cannot express how very sorry I am. I have been following Christi's story for a long time. Like many others, I am inspired by the amazing love your family shares and by how much of a fighter beautiful Christi is. This just breaks my heart. You're all in my prayers as well as the prayers of people all over the world. We're all pulling for you.

May God wrap his arms around your family during this extremely difficult time.

-sarah from british columbia, canada.

 
At 31/1/06 10:45 PM, Anonymous Amber said...

Words cannot express what I feel right now. I have been following Christi's story off and on throughout the years and I never, ever thought she get this bad so fast. I will keep you all in my thoughts, especially your lil' angel Christi.

 
At 31/1/06 10:49 PM, Blogger ChristineH. said...

Ive been worrying over you all day. Thank you, Lord, for giving Angela, Christi and Shari a safe trip, a comfortable place to stay, loving and caring friends and family. Thank you, Lord, for giving us Webby and this wonderful technology that allows us to comfort "The Thomas Team" in this desperate time. Lord, please take care of Christi and grant a miracle for her healing. Lord, hear my prayer.

 
At 31/1/06 10:52 PM, Blogger California Friend said...

.....just know that even though we can't do anything to make this better, there are SO many Thomas Fans out here; each loving a family they've come to know only on a computer screen and praying in their own way for this precious little girl and her unbelievable family. Having had a son travel this same road makes my heart even heavier....I wish I could make it all go away.

Love from CA,
Pat

 
At 31/1/06 10:58 PM, Anonymous Jan said...

Gosh,
No words seem adequate enough - except to know that you have prayers coming for your beautiful daughter from California.
My heart is heavy and I am just so sad too.
With Love,
Jan R. & Family

 
At 31/1/06 11:04 PM, Blogger Marcus said...

You have been in my prayers for a while now, but especially now. i cant seem to find words to say...

(Jennifer's Brother)

 
At 31/1/06 11:24 PM, Anonymous Anonymous said...

Through tears I send you all my love and prayers. No child should have to go through this - the cruelty of it steals away all words and leaves comfort cold. I think the fact that she is sad is the worst thing of all. With all my heart I hope the chemo has an effect, and that, at the very least, it takes away her pain. I don't know what else to say, other than to wish you all love, strength and the joy of each other.

 
At 31/1/06 11:38 PM, Anonymous Anonymous said...

Dear Thomas Team:

I am sure you don't remember me but two years ago, I was blessed with meeting you all at a Caps for Kids event....and not a day has gone by that I haven't kept up with you and your precious angel. You have no idea how much you have touched my heart. My heart is breaking for you now and I can't even imagine the tough decisions you have ahead of you. You re all in my thoughts and prayers. I don't live that far from Philly - if you need anything, please please e-mail me at JenMc1076@aol.com My prayers, tears and love go out to you tonight.

Jen

 
At 31/1/06 11:46 PM, Blogger Nicole said...

Storming the heaven For Christi and the Thomas family. Please Lord bless this family with the miracle of complete healing

 
At 31/1/06 11:50 PM, Blogger Spring said...

I wish there was something I could say to offer you comfort right now, and I know there isn't. I'm just so sorry. I'm praying here and will ask my friends to do the same.

Please tell Christi we love her tremendously, and she is such an amazing little girl. I don't want her to hurt. I wish one of us grown-ups could take her place.

God bless you and keep you, I'll be watching for updates. I will pray for God to give you some peace about the right course of action tomorrow.

Crying with you,
Spring

 
At 1/2/06 12:14 AM, Anonymous Anonymous said...

Shayne & Angela, with a heavy heart and many tears I lift you up to the Lord tonight. I pray that you will feel His arms of love wrapped around you and that He will fill you with wisdom for the difficult decisions that lay ahead of you.

Much Love, Jessica (from CA)

 
At 1/2/06 12:14 AM, Blogger Kait said...

Guess what Christi! The whole WORLD is pulling for you baby girl! I told some friends at a message board I post at about you and they're all praying for you. They think you're such a sweet, beautiful little girl and want you to get better soon. They even made some signatures with your picture on them for people to use to ask for prayers! I hope this is okay, I just know the more people praying for you the better!
Love,
Kaitlin

 
At 1/2/06 12:44 AM, Blogger courto said...

i wish Christi along with you and the rest of your family all of the luck in the world - you all need it. i'll be praying for you all tonight.

 
At 1/2/06 12:48 AM, Anonymous Julianne said...

You are all in our prayers and thoughts.

Take Care and God Bless

 
At 1/2/06 2:10 AM, Anonymous Anonymous said...

Former "Tiffin-ite" sending many warm thoughts and prayers from Tennessee. Will anxiously be awaiting another update on Wednesday. May God provide you with everything you need during this sad time.

 
At 1/2/06 3:12 AM, Blogger Whitney in California said...

I have been following your family's and Christi's battle since 2003 when I was in college. I somehow stumbled across Christi's website one day when I was supposed to be writing my thesis. I quickly became a regular reader of Angela's heartfelt and thought provoking journal updates. Christi helped spur me on when I thought I was getting tired of writing. She helped me realize how trivial my concerns were.

Although I've never met any of you I feel like I have. I want you to know that Christi and your entire family is in my thoughts and prayers daily. I'm so terribly, terribly sorry to hear about this latest turn your journey has taken, but I want you to know that - no matter what - Christi has already made an amazing and lasting impact on the world. She has taught us all lessons in love, sharing, kindness, beauty, wisdom, and curiosity to last a lifetime. Most importantly she has taught us how to experience joy in even the worst of situations.

From California I send my most positive energy and love to Christi and the Thomas Team during these difficult days.

 
At 1/2/06 3:24 AM, Anonymous Leece said...

Oh gosh - speechless, utterly speecheless. Prayers for this wonderful little girl, it must be so hard to tell her what is happening but I guess she's at the ages where she'll start working out her situation anyway. Just prayers for peace, and time, good time. Love to you all,xx

 
At 1/2/06 4:07 AM, Blogger Jennifer Saks said...

Angela, I have followed Christi's story ever since you started telling it. In fact, I wrote to you when she and I were both doing chemo at the same time. I am so sad to hear how things are going right now, and want you to know there are fervent prayers for Christi and your family from Portland, Oregon. God loves her very, very much, and He will do His best for her. MY prayer is that He will allow Christi a healthy future, but if that is not to be my next prayer is that she will not suffer and that your family will have more quality time together. We had to say goodbye to a beloved child 10 years ago. Nathan was born with a rare disease and we knew from the start that he would have to leave us--God allowed us 14 years together. There is nothing harder, but God gives His grace for endurance. Please know we are praying here, and will not stop. He is a God of miracles!
Sending hugs,
Jennifer Saks

 
At 1/2/06 4:23 AM, Blogger danielle2cook4u said...

Thomas team it's been a long time since I've seen or talked to any of you, but not a day has gone by that you have not been in my thoughts and prayers. If there is anything at all I can do please don't hesitate to contact me.
((((((BEAR HUGS))))))))

 
At 1/2/06 5:20 AM, Anonymous Colleen - Kaitlyn's mum said...

Just so unfair!

I'm crying with you.
Colleen - Kaitlyn's mum

 
At 1/2/06 6:50 AM, Blogger The Farrell Family said...

This news is so hearbreaking -- especially with the great weekend you all had!!! It's just so upsetting how things can change so quickly!! This last entry broke our hearts.

Please know that we are storming heaven, with prayers of healing and comfort, for Christi!!

As Christi has her MIBG scan this morning at 9:30, I will be down on my knees, in prayer!!! I ask everyone else, who reads this website, to do the same!! Maybe, if we are all praying, at the exact same time, it will be more powerful!!!

God bless the dear, sweet Thomas Family!

Love -
Rob, Amy, Emily, and Ryan Farrell

 
At 1/2/06 7:21 AM, Blogger The Tucker Family said...

My heart is breaking and it is has now become impossible to hold back the tears. We have prayed for Christi ever since we were directed to her site from Liam Kane's, and we will continue to pray for her and your family.

CHOP is a symbol of hope for so many families whose children are suffering from evil diseases, and we will be praying that they can once again offer HOPE for your family and Christi!

As you await the latest news from the MIBG scan, please know there are many many prayers being sent your way from your internet friends outside of Philly!

 
At 1/2/06 7:38 AM, Blogger RobinS said...

Angela and Shayne – What terrible news. I can't begin to imagine how the two of you are moving through these last few days. The tears won't stop. Please, please know how much your family is loved. And please don't hesitate to ask for any help I can possibly send.
This latest salvo has certainly come fast and hard, but then Christi has always been at the forefront, hasn't she! She's such a bright and shining child and we are all blessed to know her.
with love and prayers,

 
At 1/2/06 7:39 AM, Anonymous Anonymous said...

Dear Thomas team,never in my life have I seen such such a strong individual as Christi, she's so young but so much wiser than her years.Prayer and hope are very powerful weapons and amazing things can happen when there are so many people all over the world praying for your little girl. So we must all become prisoners of hope and pray that the Lord will pull Christi through this.I believe that we're all put on this earth for a purpose, maybe Christi's purpose will be the first to survive this beast and go on to help others as well. Anyway she has touched my life more than you will know, and I thank you for that. Much love and prayers to you all.

 
At 1/2/06 7:41 AM, Anonymous Anonymous said...

You are all constantly on my mind. How incredible that one beautiful child can affect the lives of so many who never even met her. Angela, as the mother of three young children, I can't imagine the heartache you're feeling right now. Christi is soooo blessed to have you as her mother. As you continue your fight, I'll pray for that miracle!! Fight Christi...we all love you!

 
At 1/2/06 7:52 AM, Anonymous Traci said...

I'm sad, too, Christi. I'm praying your beautiful eyes feel better very soon. If anybody has the strength and the spunk to fight this, you do. You're my hero, little one.
All my love,
Harriet

 
At 1/2/06 8:32 AM, Anonymous Anonymous said...

Please know that there are so many people lifting you all up in Prayer! Prayers for peace, prayers for comfort. Christi is an amazing child - truly amazing!

 
At 1/2/06 8:43 AM, Anonymous Anonymous said...

Lord, PLEASE hear our prayers!

Tearfully and with much love and many prayers,

Chris Walden
Brighton, MI

 
At 1/2/06 8:45 AM, Blogger HeatherB said...

Dearest Thomas Family,

You are all in my thoughts and prayers constantly. Please know that I love you all dearly. You are precious and dear to me.

I'm sad too. My heart, my prayers and my love are with you all.

Christi is my hero and my inspiration. Give that amazing little fighter a great big hug from me and tell her that I love her!!

With love and tears shed for and with you,
Heather

 
At 1/2/06 8:45 AM, Anonymous Anonymous said...

Please leave an address if Christi is admitted today. I have something I want to send to both girls, and I'd really like to get them in the mail as soon as I can!

Thanks,

Chris Walden
Brighton, MI

 
At 1/2/06 9:13 AM, Anonymous Anonymous said...

Oh, I'm praying there is still time for a miracle for Christi! It's nearly 9:30, so I will be praying hard for you in these next hours. Please, God, find a way to heal Christi so that she can continue to be a light to others here on earth. Please calm Christi's fears and worries, and let her know she is loved so much by so many!!

Thomas Team, you are not alone -- there are so many of us out here in "internet land" that send you our love and support!

With love,
ChemoAngel Nancy in NH

 
At 1/2/06 9:26 AM, Blogger Olivia said...

I can think of nothing to say. This must be such a difficult time for all of you and I wish there was a way to make this nightmare go away. I am thinking of you all. Christi, you are such an inspiration.

 
At 1/2/06 9:43 AM, Anonymous Anonymous said...

Angela and Shayne,
There are no words, but please know that I will be praying for you all. I'm so sorry.

Christi,
You don't know me, but I feel like I know you. I'm so sorry that you are in pain, and I'm praying that you will feel better soon. Always remember that that it is okay to be sad or angry, and NEVER FORGET that people all over the world are in this fight with you! You make this world a better place to live in, and you show us that miracles DO happen every day!

Shayla,
You go girl! I wish I had a little sister like you! You make Christi, Mommy and Daddy feel sooooo much better with that beautiful smile!

Nathalie, Finland

 

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