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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Thursday, February 02, 2006

Daddy's here!


"I'm glad you're here." (One of the very few sentences out of Christi's mouth today.) Pause. Disturbed look. "Who's watching Shayla????" (Cracked us up!)

Never will I forget Shari's kindess of just being with me during my darkest days. It's hard to believe that someone I became friends with back in kindergarten has remained my friend ever since. God is good! Shari arrived safely back in Ohio tonight and only called to ask, "What row did you park in?" trying to find my van at the airport. It's fabulous to have Shayne here and I called home to chat with Shayla tonight - she was SOOOOO happy that I arranged for her to have an overnight at a friend's house this weekend and that Grandma bought her new tennis shoes. She sweetly asked how Christi was.

I wish I could say that Christi is doing better, but sadly that is not the case at all. Other than a few minutes here and there, she has been flat on her back the entire day. Shayne was disheartened to see a dramatic drop in her appearance over the 48 hours we were apart. Again she wanted stories read to her, but her eyes are closed and she's been in a lot of pain. With three adults all reading to her today, we started and finished three chapter books. I cannot believe how rapidly she has declined - all before my very eyes. Sickening! When I left her tonight she had on a "gel mask" that Shayne bought for her on the way to the airport today to give her eyes some possible comfort. Her last words to me before I left to come back to sleep at the Ronald McDonald House tonight were, "I can't see and my nose is bleeding." (Ah, now I'll sleep so very well back here, won't I?!) I am reminding myself that she is in the very best of hands!!

The morphine really wasn't cutting her pain so we've added dilaudid which is possibly working better. I hate to have her on some many meds, yet she really is miserable. The "vomiting festival" is most likely yet to begin. Today she only threw up one time during her chemo infusion - day #2 of five days. (Of course she's not eating either. Yesterday it was an apple and crackers, today two strawberries and popcorn.) I'm making up for her though - the Girl Scouts in Philadelphia are delivering their cookies much earlier than the Ohio scouts and thanks to the Grants' care package, I'm supporting scouting! (Smile). (Tim's drive to the hospital was amazing!! Unlike every Philly cab Christi's ever ridden in, she didn't get car sick. He took her "slow and steady wins the race" suggestion to heart and so carefully and smoothly delivered us from the other side of the city right to CHOP's door yesterday!! Amazing, careful and very contentious driving - what a blessing!)

Today I asked Dr. Maris to see the CT scan of her head. He told me it was very disturbing and quite frankly I think that was sugar coating it. What I thought were large bumps pushing outside of her head are nothing compared to the larger ones pushing in. I was dumbfounded how she cannot be having more pain after witnessing the CT on the computer late this afternoon. The report says many things, but basically: multiple skull metastases including bilateral orbits. One lesion is 3.1 cm by 2.2 cm - pretty big for a little girl's head. HOW I HATE THIS DISEASE! The entire skull is PACKED SOLID with disease according to my eyes on her CT images. (Dr. Maris explained it to me that the skull is like a helmet so all of the bones make up the skull and that is why she is having jaw, tooth, and cheek pain in addition to eye and head pains.)

The MIBG scan was just as ugly in print as it is here on the blog: multiple foci of increased update with multiple new lisions in the following reigions: throughout the skull, posterior left upper chest, right proximal and distal humerus, right elbow, left proximal humerous, mediastinum, thoracic and lumbar spine, bilateral pelvis, bilateral proximal and distal femora and both proximal tibia. Previous focus appear more intense on today's study. So after reading all of that I ask myself, "Where doesn't she have cancer???" Impression: widepsread metastic disease withsome new lisions indicating progression of the disease.

Thankful I am that Shayne is here. Thankful I am that our computer is here. And thankful will I be when Shayne (hopefully) gets it up and running tomorrow so that I can check my email and update her blog with great ease. I'm praying that tomorrow her meds will kick in for pain relief, relief from the sinus infection and that the chemo will work and will reduce this disease and the pain it is calling this little sweetie pie. What a gift she has been! I rejoice for 8 1/2 wonderful, years even though I want 8 1/2 more!!

34 Comments:

At 2/2/06 10:22 PM, Blogger HeatherB said...

My tears are endless for all of you tonight. Oh I'm soo sorry to hear that precious Christi is having so much pain.

I pray that it gets under control soon.

My heart is with you all!

I love you guys.

Love and Prayers,
Heather

 
At 2/2/06 10:28 PM, Anonymous Anonymous said...

Angela and Shayne
I've been checking the blog every few minutes in hope of receiving news of Christi today. Of course I was hoping for something better than what I am reading.
It's just so unbelievable that Christi's disease has taken off so suddenly when she's always managed to keep it under some sort of control.
I hate to imagine her sweet face with obvious tumours. So unfair!!
Please know you are in our constant thoughts.
Our love to you
Colleen and Kaitlyn

 
At 2/2/06 10:30 PM, Anonymous Anonymous said...

How heartbreaking, I PRAY that this chemo works !!! Please GOD this baby needs to be pain free and able to live like a child PLEASE HEAR OUR PRAYERS. Does the family need ANYTHING I realize we dont know you but like so MANY others everyone wants to help. If there is anything PLEASE POST it on the blog,

PRAYING in OHIO !!!

 
At 2/2/06 10:32 PM, Anonymous Anonymous said...

Prayers continue for all of you on a constant basis. I'm thrilled Shayne got there safely. I know Christi was so glad to see him. I have followed Christi's journal from day one , and am pleased that so many loyal prayer warriors can now leave messages. God bless all of you. Ellen

 
At 2/2/06 10:35 PM, Anonymous Anonymous said...

I am so sorry to hear the news. I am praying steadily for her. My church is praying for her. I am asking God to wrap his loving arms around each and everyone of you during this awful,trying time. Praying for the pain medicine and the chemo to start working so that you can be blessed with many more yrs with your precious little girl.

 
At 2/2/06 10:38 PM, Anonymous Anonymous said...

I just don't know what to say. My heart is heavy.

You are in my prayers continuously throughout the day and night.

Elizabeth

 
At 2/2/06 10:38 PM, Anonymous Anonymous said...

Was wondering if there's anyway I can send Shayla something for her birthday from Australia?
Of course I'd need an address to send to.
Could you please advise if you get a free second or two.
Colleen - Kaitlyn's mum
dunnomuch@westnet.com.au

 
At 2/2/06 10:42 PM, Anonymous Anonymous said...

and I hope you get many many more than 8 1/2 years!

Still not giving up.
Visualizing the bumps melting and leaving sweet Christi's body. Visualizing her body free from pain and her spirit glowing brightly here on earth to spread her love and wisdom and unique being here in the human realm.

Sending love upon more love and cyber (((((((((((hugs))))))))))) to hold you up
Eliza

 
At 2/2/06 10:48 PM, Anonymous Anonymous said...

I know how tired you are and appreciate so much that you make this effort to inform us (people you don't even know, yet are praying for you)and keep us updated on Christi. We will keep praying! As you continue to read from the other comments, anything absolutely anything that you need do NOT hesitate to ask. Someone out here will be able to help.
Much love to you all
Jodie and Karlie

 
At 2/2/06 10:51 PM, Anonymous Anonymous said...

...praying in iowa. i echo the prayer above. i will continue to be thinking of you all, no matter what. god is good.

-kate

 
At 2/2/06 10:55 PM, Blogger nikki the red said...

i have everyone i know praying for healing and comfort. christi is a precious gift that the world has been given. she's done more in her 8 1/2 years than i probably will ever do. she's an inspiration to me.

 
At 2/2/06 10:57 PM, Anonymous Anonymous said...

I've just recently learned about Christi and her struggles. I stumbled accross the website while researching the hu14.18 study. My daughter is getting ready to start her 4th round.
I'm praying that God will sustain EACH of you through these difficult, dark days. May God continue to be glorified in your lives.

 
At 2/2/06 10:59 PM, Anonymous Anonymous said...

I'm sick. I hate to hear that Christi is in pain and the disease is so widespread. How I pray for relief for Christi. I pray for your strength. I still pray for healing.

Love, Lydia

 
At 2/2/06 11:00 PM, Blogger Kait said...

I'm "praying without ceasing"and hope that soon we will begin to see the results of this chemo working. Hope they keep Christi on plenty of Zofran so her tummy doesn't feel quite so yucky!My heart is breaking, I can't even begin to imagine what you and Shayne must be feeling right now.

 
At 2/2/06 11:02 PM, Anonymous Anonymous said...

Shayne/Angela...
Thinking and praying all day long. God bless you Neil.

 
At 2/2/06 11:03 PM, Anonymous Anonymous said...

What a wonderful blessing Christi has been in so many peoples' lives! More than any of you will ever know. Praying for a miracle as well as pain relief and comfort. You are in my thoughts and prayers. May you all find comfort and grace in His hands.

Love
Chemo Angel Holly

 
At 2/2/06 11:03 PM, Anonymous Anonymous said...

This just makes me so sad. I pray that Dr. Maris and staff can keep her comfortable. I'm praying for each one of you.
With love,
Patty Good
Lake Wylie, SC

 
At 2/2/06 11:05 PM, Anonymous Anonymous said...

I have been checking your site all day for news on Christi (however don't feel pressured to update!) SO many of us "prayer warriors" are out there for you! I cannot believe what she is having to go through right now and no person should ever have to endure this. Your family will never be far from my thoughts over the next while. We are all praying for a huge miracle and that this nasty, disgusting disease will just get beaten silly by the chemo. God willing, tomorrow will be a brighter day and Christi will remain 'puke' free.

 
At 2/2/06 11:08 PM, Blogger HeatherB said...

Tons of prayers for you all. This is so horribly unfair.

I'll be praying for pain relief for sweet and precious Christi. I know she couldn't be any more loved than she is. She's got the best parents any kid could ever hope to have.

I love you!!

Lots of love, prayers and tears that are endlesly falling.

Heather

 
At 2/2/06 11:13 PM, Anonymous Anonymous said...

Dear Angela and Shayne...and of course Christi,

Glad to see you are all together....wishing you had better news. Hope you can get some rest tonight and Christi will have more energy tomorrow. Praying the Chemo will give relief...praying for strength for all of you!

Love, Hope and Hugs....

The Hollway's
Marym, Bill, Billy, Mike and Molly

 
At 2/2/06 11:16 PM, Blogger Jennifer Lehmann said...

I've been checking this about every .5 seconds since I got home from school today. Thank you for keeping this blog up! You are amazing! She looks SOO happy with daddy!

Oh how I hope those extra pain meds and this chemo do the trick. She's such a fighter.

If you need ANYTHING at all, my mom and I will do it in a heartbeat. We aren't far from home and are willing to do anything for your loving family!! We LOVE Shayla and would have no problem entertaining her for a day to give your mom a break!

Many prayers and lots of love,
Jennifer

 
At 2/2/06 11:16 PM, Anonymous Anonymous said...

it almosts seems like that new treatment has encouraged the disease to spread, not respond to it favourably! how shocking and awful to read what you're all going through, especially brave, sweet Christi. please keep fighting, darling girl. i pray for an end to your pain, and for this chemo to give you relief. i pray for your parents, for their strength and courage (which they have in abundance). i pray for your healing here on earth. what a horrible, horrible disease to turn a beautiful child in a matter of mere days to a child in pain, and so ill. please get better, sweetheart.

 
At 2/2/06 11:36 PM, Anonymous Anonymous said...

I've been checking all day on you guys waiting for any news! I am so glad Shayne made it safely! I am so glad you updated before you try to get some rest!! What a beautiful smile!! Remember xoxoxoxo and some more xoxoxoxo's!! There are just no words to say anything that needs to be said!! I am in my knees!!

Tammy Mom to Angel Cody Brown

 
At 2/2/06 11:42 PM, Anonymous Anonymous said...

I am glad Shayne made it. There is nothing like a daddy to cheer up a little girl. Are there any specific books/authors that Christi enjoys? I would be happy to ship some your way. Renae

 
At 2/2/06 11:49 PM, Anonymous Anonymous said...

Our many prayers go out to the Thomas team. What a brave child to have to endure such pain. My wish is for Christi to find comfort and peace at this time knowing that so many people are pulling for her. What a brave child she is!
With many prayers in Illinois,
Jennifer (Buckley) Brown

 
At 3/2/06 12:05 AM, Anonymous Anonymous said...

Angela,
My heart is aching for you and Shayne. I can't imagine how you must be feeling. Thank you for keeping us updated, I know the computer screen is always blurry through the tears. I love you so very much, and I wish there was something I could do or say to ease your heart. Please let us know if you need some explorers to bring you anything, even if it's just a hug, we deliver.
Praying without ceasing,
Traci

 
At 3/2/06 12:14 AM, Anonymous Anonymous said...

Praying for you in Iowa. I just can't believe she was just in school a few days ago.
With Prayers and Much Love,
Sue

 
At 3/2/06 12:25 AM, Anonymous Anonymous said...

Keeping your precious little girl, and your whole family, in my thoughts and prayers. I can't believe how quickly this has progressed. I will continue to pray for a miracle for Christi and for her comfort and pain control. I have been following Christi's story for a long time and am just shocked at how fast things have changed. Stay strong and give that beautiful little girl a hug for me today!

 
At 3/2/06 12:48 AM, Anonymous Anonymous said...

Dear Angela and Shayne,
Your family is in our prayers. Christie is such a beautiful little girl.

Lots of love and hugs.

Candace, Benjamin's mom

 
At 3/2/06 1:03 AM, Anonymous Anonymous said...

Praying for you in Oklahoma.

 
At 3/2/06 1:21 AM, Anonymous Anonymous said...

Shayne and Angela,
We have been so saddened by this turn. So much heartache. So much pain. I'm so sorry. We have been praying for each one of you -- constantly. May you have a palpable sense of his presence, his comfort, strength...and wisdom. Rest assured in the beautiful, loving care you have been providing sweet Christi.
All our love,
-bob, laura oconnor and family

 
At 3/2/06 6:37 AM, Blogger HeatherB said...

Loving you guys and praying.

 
At 3/2/06 8:00 AM, Anonymous Anonymous said...

What an amazing child to inspire so many from so far who do not know her personally. It truly is awe inspiring to realize how she (and you both and Shayla too) have touched so many lives. She is TRULY a special, special girl. Many prayers and thoughts for some "control"...control over the pain and control over the progression. Keep fighting brave girl and as always keep reading! You are so bright!!!
Much Love Always!
Beth

 
At 3/2/06 12:43 PM, Anonymous Anonymous said...

Dear Christi
I have been praying in earnest for you. You are a very precious, beautiful young lady! I admire your determination. Keep believing that a miracle can happen because they do all the time! I have a young cousin who has been cancer free for several years after a battle with neuroblastoma. YOU GO GIRL!! I hope you are feeling better each and every day. May God be close to you and your family as you fight this battle.

 

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