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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Saturday, February 04, 2006

Morning Update

"I eat an apple a day and he still doesn't go away," was Christi's comment filled with giggles to her friend via telephone as Dr. Maris entered her room yesterday. (What a hoot she is!) Christi's pain meds were completely stopped and so kind was it of friends to call and chat with her yesterday. (I figured my cell phone bill was a small price to pay to watch her HAPPILY chatting away on the phone.)

This morning her spine is hurting. We know she has disease in her spine so we're confident that is what it is; yet, we pray that the disease is not progressing. "That would be grim," said Dr. Maris when we asked if there is any treatment to try if she progresses through this chemo. He said, "I'm confident this is going to work." (Yet, we know that Dr. Maris is typically over optimistic.) And Dr. Maris considers just halting this rapid progression as "working". CHOP hasn't been able to give us the study information yet, but thanks to our internet friend and fellow NB Mom, we had it emailed to Shayne before she even started this chemo!! (Keep in mind our friend who's daughter did these same chemo is from France!! Amazing technology, unbelievable friends!!!)

Christi is treating per a European protocol, Topotecan, Vincristine, and Doxirubican (TVD). According to their Phase I trial, where the dose was determined, 25 children were enrolled. Five children's neuroblastoma progressed. All others were stable or had decreased disease for 2-14 months. Definitely not realistic with this aggressive of a cancer, yet hope gets me through so it is my hope that she'll respond and be able to do this treatment for 14 months. Dr. Maris's goal is more realistic in that if she does respond he'd repeat it for a few cycles and then switch to other chemo agents.

Yesterday Maris stated he had hoped since she hadn't seen these same agents in a few years that she would still be responsive to them and he was happy that her pain had diminished. Shayne and I question the efficacy knowing how prior to initial diagnosis she'd be in pain for a while and then feel great for a while. We're fearful that that is what is happening and it's not that her cancer is shrinking. Her "bumps" are all still there, but thankful are we that most all of her pain is gone. This morning she still has "puffy" disformed eyes, but she says that her face isn't numb any more.

Since my arrival at the hospital this morning, we've read her new American girl book - takes place in Belize where Shayne and I vacationed just prior to Christi's diagnosis. (Keep in mind Shayne's cognate area for his undergraduate degree was in Central America so it was PERFECT that this story takes place on a dig of Mayan ruins!), played "Sorry", talked with Nee Nee and Shayla and now (as you can see) she's busy checking her little email account and playing "Neopets.com" -raising those baby pets, while I sit beside her and update this blog. I'm so glad her eye situation has improved and she's again able to do these things she enjoys so much!! God is good!

Her blood counts have fallen, but that was to be expected. Platelets now down to 93, white (I'm guessing here 3.1, with hemoglobin of 10.7.) She's still okay to be out and about, but that's probably not going to last much longer. Her nadir should hit about February 11th.

Her chemo shall soon begin for today and after it runs we're hopeful to get a pass to go out and walk around for a while. I'd like to get her to the UPenn bookstore (a Barnes and Noble) so she can pick out a few more books that she likes, but we'll see how it all goes. We only packed for a 24 hour visit and we finished the four books I had packed early on so I'd like to get her to the bookstore if possible.

Some have emailed me with questions regarding the hu14.18 - IL 2 study Christi was on a couple of weeks ago. We have heard that it closed due to toxicity; however, it has nothing to do with Christi's situation of rapidly progressing disease. Other children who started it are (thankfully) allowed to continue if they did not suffer from toxicity, but no new children are being enrolled. We do believe it'll prove to be an effective treatment for NB, just not for Christi (with rapidly progressing disease) right now.

24 Comments:

At 4/2/06 10:54 AM, Blogger The Farrell Family said...

Good Morning, Thomas Family!!! We love that Christi is feeling better. We pray that you will get a pass to go out today. We always love to go to Barnes and Noble.

We loved the picture yesterday with Christi and Jess. Our daughter, Emily, is quite the American Girl fan, too! She has three and would love to add Jess to her collection.

We continue to "pray without ceasing" for sweet Christi's complete healing on earth.

God bless you all and have a wonderful day.

Love -
Rob, Amy, Emily, and Ryan Farrell

 
At 4/2/06 10:56 AM, Anonymous Anonymous said...

Hi Christi, You are such a sweet brave girl. Hang in there, I think the whole world is cheering for you. Love Carol

 
At 4/2/06 10:57 AM, Blogger HeatherB said...

Hi Christi!

I'm here at work and getting my day started seeing you on the computer made me smile! :)

I hope you are able to get out the Bookstore today, and pick out some new books to read with Mommy.

Lots of Love, tons of prayers,
Heather

 
At 4/2/06 11:07 AM, Anonymous Anonymous said...

I'd like to send Christi an online gift certificate to Barnes and Noble, but I need a recipient email address.

 
At 4/2/06 11:46 AM, Anonymous Julianne said...

Christi and Family
So happy to hear that she is feeling a bit better. That doll is awesome isnt she. My daughter has one just like her. Hope you get your pass and we are praying this chemo knocks the cancer off its feet.
Take Care and God Bless
Julianne

 
At 4/2/06 11:46 AM, Anonymous Anonymous said...

Hi, Im from the uppersandusky area . I have been praying for Christi for the past year . I have been on the site . Rebuke in the name of Jesus this child will be healed from cancer .

God bless the Thomas family :)

 
At 4/2/06 11:51 AM, Anonymous Lisa burt said...

Have a great day Christie! Still zooming up prayers for you.Lisa

 
At 4/2/06 12:05 PM, Anonymous Anonymous said...

Dear Thomas Team,

You don't know me, but I have been anxiously following Christi's blog and have been rooting for her!
So great to hear that Christi is feeling better! What a glorious sense of humor she has, and we are all praying for her to be happy and healthy for as many years as possible.
Since she has been in need of books lately, I was wondering if she has read any one of the five Heartsongs series by Mattie Stepanek? In case you haven't heard about him, he was a poet with books on the New York Times bestseller list and was on Oprah and Larry King several times. He died of a rare form of muscular distrophy at the age of 13 in the summer of 2004. His poetry is very inspirational and is simply written, but expressive of deep and sincere emotional and spiritual truths. He was also Catholic (so many great Catholics around these days!)

Anyway, I have several of his books and would be overjoyed to send some to Christi.
My email is adam88uc@aol.com

Much Love and Prayers,

Adam Bowles

 
At 4/2/06 12:10 PM, Blogger Lori Grine said...

Oh, my heart is so with you! I may have to call again, Angela, as we're likely to lose the Internet due to the approaching 100%-chance snowstorm! Many of us will feel cut off from information without this link. I could at least use telephone to update as many people as I know who are trying to keep in touch. I'll send these notes as long as I can...but when they stop...know that we're out of power! My words for you and Shayne today:
The challenge set before you (to which you both so humbly respond) is to move with confidence into the reality of uncertainty...but know that as you do you maximize your sphere of influence and love to SO many people! Again, well done, good and faithful servants. May God bless the doctors, you, and your decisions made together. Tell Christi that Ernie is going to send her a message on your e-mail if you can access it. Love you so much!
Lori

 
At 4/2/06 12:32 PM, Anonymous A friend in Philadelphia said...

We are still praying for you and your family. Since you only packed for a 24 hour stay, there must be some things that you need ... You don't know us, but we are coming in to the city this evening and would happily drop off anything that you need. Please email raesinquin@yahoo.com with anything that you need, clothes, toiletries, whatever, we will get it to you.

The Rae Family

 
At 4/2/06 12:51 PM, Anonymous Heather said...

I just came upon your site a few days ago. My heart goes out to you and your family. I am also a cancer mom. My son Ryan is also treated at CHOP. They are so wonderful there. Although I have never met Dr. Maris I have heard amazing things about him. We will be up on Mon for a clinic visit. I would love to stop by and meet you guys if we have time. (depends on how cooperative Ryan is!!)Please know that my family is praying nonstop for you.

 
At 4/2/06 12:56 PM, Anonymous Jen said...

Hi Thomas family!

My name is Jen and I'm a music student (opera) in Miami. I've been following Christi's story for quite some time. I just wanted to reach out and tell you that you are in my thoughts. Reading about Christi puts my own life into perspective and I am thankful to you for sharing your lives with me. I wish you all the best and I will continue to pray every day until you receive the miracle that all of you so deserve.

With much love,

Jen

 
At 4/2/06 1:34 PM, Blogger Jennifer said...

Leave it to Christi to lighten any situation! So cute.

I'm so happy to hear that she is up and playing again today. God's work is incredible!! I hope you get the chance to leave the hospital for a while and get to that bookstore and that she continues to feel so great.

Lots of Love & Prayers,
Jennifer

 
At 4/2/06 2:37 PM, Anonymous Linda & Pat said...

We were happy to read that sweet Christi's feeling better (off pain meds) and even smiling!!!

So many doctors aren't optimistic with NB so I'm glad Dr. Maris is.

Keeping Christi and your family in our prayers.

 
At 4/2/06 2:43 PM, Anonymous Rachel (from Ky) said...

Hey Thomas Team!

So happy to hear that Christi is having a decent day and that she's feeling a little better!

Still praying and hoping for a miracle here in Kentucky!

We love you!

 
At 4/2/06 3:04 PM, Anonymous Lydia Leslie said...

So glad to hear that she is up and about doing some fun things. Still praying for healing. We sent a package to you today that should arrive on Monday at the Ronald. It inlcudes about 5 books that I hope she hasn't read yet. You are in our prayers every minute.

 
At 4/2/06 3:14 PM, Anonymous Caitlin said...

How great that it is to see Christi up and about! As I said earlier, myyounger sister, Julie, is also fighting cancer. I have many times shown Julie Christi's site and she gets so much strength from Christi. She cannot believe that Christi is sick and just adores her little cat (Buttercup, I believe?) When Julie's horribly sick from chemo and other treatments, Neopets is like her other home! She can do something fun that doesn't require much energy. If you have the time, could you tell me Christi's username? I'm sure that Julie would love to message her and give her some gifts over it while Christi's stuck up in the 'Hilton' (that's what cancer families here call the hospital!) I'm so glad that Christi is feeling better and will pray non-stop for the chemo do do the trick. We are ALL behind you Christi! You can do it!

 
At 4/2/06 3:34 PM, Blogger California Friend said...

Hi Guys,
I so hope you were able to get your Get Out Of Jail Free card today...I know what a difference a change of scenery can make; besides, anyone well enough to give her Dr. a hard time is well enough to (and sure deserves to) go out!! (I just LOVED the apple a day comment!!) Hang in there ... the light at the end of the tunnel seems to be getting brighter!!

Love & hugs from CA,
Pat

 
At 4/2/06 3:36 PM, Blogger Kait said...

Christi, glad you're still feeling so well. Email me at gabbyamanda13@yahoo.com
and tell me some of your favorite things to play with and books to read so I can send you some fun stuff to do while you're in the hospital!

 
At 4/2/06 4:06 PM, Blogger Angela said...

Dear Thomas team,

I hope you got to the book shop today Has Christi read Charlotte's Web and the Trumpeter Swan? Both written by the author of Stuart Little, is that E G White? I can't remember his name. My children loved those books at Christi's age, I enjoyed reading them with them, he was such a brilliant author.
I loved Christi's joke about the apple a day, she is really a scream!
I keep praying that this treatment will make Christi a lot better and lead to a complete cure for her. God Bless her, and you, her family, take care.
Lots of love
Angela

 
At 4/2/06 6:29 PM, Anonymous thalia said...

I'm very glad that christi is feeling a little better, and that you got to go to the bookstore. I know how painful it is to be without books to read!

 
At 4/2/06 8:13 PM, Blogger Spring said...

Rooting hard for you, Christi! We are praying here and so glad to see you feeling well enough to get up and use the computer. There's a package on its way to you Monday with some fun stuff to help you pass the time.

Angela and Shayne, love you and praying for continued strength in this fight. I hope you have a peaceful, restful night.

Spring

 
At 4/2/06 10:42 PM, Anonymous Ellen Hanson said...

So glad Christi is feeling a little better. I hope you are taking advantage and getting a little rest. Continued prayers, Love, Ellen

 
At 11/2/06 12:36 AM, Blogger Debby Martindale said...

We are praying for a total and expeditious healing of Christi

She is an angel- a true gift to all

 

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