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 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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Sunday, December 31, 2006

FU-NB-2006 Christi's Contribution in the News

Today's Newspaper, so sweet!

Shayla and I weren’t in the door five minutes before we both ended up in tears this afternoon. It was a very long drive home from Florida. Thankfully, after driving all through the night Shayne pulled into my sister and brother-in-law’s home at 6am and we crashed there comfortably for a few hours. Shayla and I were able to sleep in the van late last night. Shayne is incredible with his ability to drive all through the night which he learned to do so that a very car sick, queasy Christi was able to get to her treatments in NYC and in Philly without too much discomfort. Christi never would have made it with all of the driving on this trip!

After getting a few hours of sleep this morning (and Shayla getting some more precious hours with her awesome cousins), Shayne drove off one way to go visit his grandma in the hospital where she was admitted on Christmas Eve while Shayla and I drove off the other direction for home. Arriving home Shayla discovered that the foam mask Christi made for her at Girl Scout camp last year was chewed up by one of Christi’s cats while we were on vacation. This immediately moved Shayla to tears as she sobbed into my arms, “Now Christi can’t just say, ‘It’s ok. I’ll make you another one, she can’t!” I found my own tears meshing with hers as would sometimes happen when Christi was hurting and there was nothing I could do but hold her and cry with her. Leaving this place full of constant Christi memories is a great relief; however, I should have learned by now coming back each time is like a smack in the face. “She’s really gone,” hits you as soon as you walk in the door and of course notice her little shoes.

Shayla got herself together and was then ready to pack up to go to her annual New Year’s Eve bash at “Grandma” Donna’s. Our girls had so much fun every year they were able to go there and of course only “Grandma” Donna would let them go out on her porch and bang together pots and pans to create a lot of noise at midnight!! I dropped Shayla off and caught up with “Grandma” for about an hour and a half. Shayne is now on his way home. Knowing how Shayne can turn a hospital room into a party room at the drop of a hat, I wasn’t surprised when he said he stopped and bought some decorations and decorated his Grandma’s room! Without a doubt, she’s now styling and ready to ring in 2007 tonight despite being treated for congestive heart failure! Our thoughts and prayers are with Grandma again tonight. Shayne and I will spend a quiet evening at home, doing laundry and getting settled back in.

This morning I was pleasantly surprised to pull up the wonderful Advertiser-Tribune newspaper on-line in Cincinnati and see the incredible article Jill Goshe wrote about Christi’s cell line being established!! It wasn't until I got to Grandma Donna's tonight and she gave me the paper that I saw all of the great color photos and other information also included in this full page, plus second page article. Additionally, she gave me yesterday's paper which showed our little science lover as a teaser on the front page with a picture of Christi wearing her science goggles and the caption "Christi's spirit living on...through her cells, Sunday." So sweet!! Thank you to the great, AT! It's a lovely tribute!

Here are my favorite quotes from the lengthy article: "Because of the unique name of the cell line, I'm sure it will become a very famous cell line very quickly," said Dr. Maris. "We've already received the cell line in my lab, where we'll be using it almost immediately," Dr. Maris said. And most importantly Maris said, "Resistance to chemo is relative to all types of cancer, and Christi's cell line could play a role in finding the elusive cure." Also, not shown in the on-line link is the picture of the technicians responsible in LA with Christi's cells in a flash. Live on, sweetpea!

Earlier this week Shayne and I were quite surprised to learn that Dr. Reynolds only has about a 3% chance of getting Neuroblastoma cells to grow!! We knew it was a low chance (about 20%), but we didn’t know it was THAT low. I can’t help but think a special little “science freak” mad scientist-type Angel was giving those scientists in LA some “heavenly” help to get those baby cells to grow! It is awesome knowing that a part of her still lives and may prove to help others one day! I’ll include the link here, but the on-line edition doesn’t include all of the photos so I snapped one here for anyone who may wish to see. As you can read in the article, Jill did a wonderful job with her reporting, especially with her "gentle" way of expressing the name (FU-NB-2006) and what the doctors' reactions were to it. Our deepest thanks to Jill and to the AT for sharing this exciting news with our great community and our Internet friends who don't get the Advertiser-Tribune in their towns!!

Here is the link:

Here is the text:Christi’s contribution to a cure

By Jill Gosche


Dr. John Maris (foreground) and Dr. Edward Attiyeh work to identify types of neuroblastoma, a common and aggressive childhood cancer. Maris treated Christi Thomas, who died from the disease in September.
Cancer can't kill a child's legacy of helping others.

Christi Thomas continues to contribute to a science world seeking to defeat the disease her body could not overcome. Her cancer cells grew in a California laboratory despite low odds of success.

“I think Christi would want to help,” said her mother, Angela Thomas.

Researchers first will focus on finding new treatments or a cure for neuroblastoma while using the child’s cancer cells, and then they will turn their efforts to other types of cancer, said Dr. John Maris, associate professor of pediatrics with a specialty in neuroblastoma at Children’s Hospital of Philadelphia.

He said he thinks resistance to chemotherapy is relative to all types of cancer, and Christi’s cell line could play a role in finding the elusive cure.

‘Gives me comfort’

Maris said scientists are more successful when they try to grow cell lines researchers harvest at the end of life; the cells are more likely to adapt to new environments when they’re more resistant.

The procedure involved drawing about 2 cups of blood from 9-year-old Christi’s body in her room at Children’s Hospital of Philadelphia within five minutes of her death at 9 a.m. Sept. 19.

He said doctors performing the procedure assume cancer cells are leaking into the blood stream and later attempt to isolate them from the blood for testing.

Maris said the procedure is not routine at the end of life, but he wasn’t too surprised Angela and Shayne, Christi’s father, chose to have their daughter’s blood drawn after death.

They know doctors need better mechanisms to find new drugs if researchers are to identify the cure to neuroblastoma, he said.

“They had a lot of insight,” he said. “They had a very unique way of tapping into a variety of different resources to learn more about the disease than the average family and really champion … the cause of getting Christi the most cutting-edge care as was possible.”

Dr. Patrick Reynolds of Childrens Hospital Los Angeles said his laboratory works in collaboration with the Children’s Oncology Group and receives samples from all over North America.

Doctors harvest some at diagnosis, while others take the cells at times of relapse.

He said he receives an average of one a month from neuroblastoma, and 3 percent of all neuroblastoma samples he receives experience successful growth.

“We’ve done thousands to get the hundreds that we have,” Reynolds said.

Reynolds and technicians put cells in cultures, look at how they behave, decide how to get them to grow and determine their next steps.

Reynolds said researchers generally need one to two months before they’re assured a line is growing enough to test and validate the results. They started noticing hints of success about three to four weeks after they received Christi’s sample, he said.

Angela said she thinks Christi had a hand in the success, and she pictures her daughter helping the scientists as they tried to get the cell line to grow.

“That gives me comfort,” she said.

Reynolds said researchers will be able to request Christi’s cell line sometime in January, and they will study its response to certain drugs.

He said the key is to test new drugs that could be used for patients participating in clinical trials.

“We’ve already received the cell line in my lab, where we’ll be using it almost immediately,” Maris said. “We will be using it to test new drugs to see if they kill neuroblastoma cells and whether or not we can move these drugs into patient clinical trials.”

Reynolds said he’s learned about a lot of cases where laboratory findings don’t correspond to what doctors see happening in patients.

Doctors diagnose about 600 neuroblastoma cases each year and work from 200 cell lines — a number that grows each year — and each has received different treatments, he said.

“Biology is heterogenous. Tumors are heterogenous, and we have to have lots of these to understand what works,” he said. “We hope that (using cell lines to test new drugs) will help us focus on getting the right kinds of drugs into the patients.”

‘Mad at cancer’

Shayne said the family members tried to keep their spirits elevated — an effort that usually failed — and the atmosphere light during the last weeks of Christi’s life.

He said he and his wife had signed the limited autopsy consent forms and were thinking about packing up their rooms at Children’s Hospital of Philadelphia and Ronald McDonald House and returning to their rural Tiffin home after their daughter’s death.

Also, Shayne and Angela slept in shifts next to Christi’s bed so they wouldn’t miss her passing.

Shayne maintained joking relationships with his daughters and compiled a list of the top 10 insensitive comments he had made. The list included the predicted name of Christi’s cell line: FU-NB-2006.

“It was in jest, but the feeling’s legitimate,” he said.

When Christi’s 7-year-old sister, Shayla, questioned the use of “FU,” Shayne explained, “I’m mad at cancer.”

Maris said he chuckled at the suggested name and thinks Shayne and Angela’s attitude is born out of terrible frustration, but shows they’re strong people who faced a horrible disease for a long time.

“Because of the unique name of the cell line, I’m sure it will become a very famous cell line very quickly,” he said.

Reynolds also said he chuckled when he heard the proposed name and questioned Maris whether what he thought it meant was correct.

“It didn’t surprise me,” he said. “They have a good attitude.”

Reynolds said he spent 17 years in the military, and the Thomas family responded the same way as soldiers when they lose a comrade.

“If you’re in a war … you take losses, (and) you want to hit back at the enemy,” he said. “The only way you hit back at this enemy is research.”

‘We wanted the best’

Shayne said neuroblastoma initially is susceptible to treatment, but it has acquired a multi-drug resistance to front-line agents.

When Christi’s disease did not respond to chemotherapy, her parents started reading about clinical trials. Shayne said often, first-phase trials only have been attempted in mice.

Shayne said Christi’s cancer had progressed through various treatment efforts, and nothing could stop neuroblastoma because of the resistance it had acquired.

“We knew that Christi had seen nearly every experimental agent that was available for neuroblastoma treatment. It’s a pretty impressive list of things she tried,” he said. “Her cancer had had a unique history.”

Shayne said he and Angela wanted to offer Maris the opportunity to harvest her blood because they had four years of treatment and contact with researchers trying to stop neuroblastoma.

He said the family was in the hospital by design at the time of Christi’s death, which meant doctors could draw her blood to attempt to regrow her cells.

“When we were at the end, we were indebted to all this research,” he said. “It’s just part of a common theme we had all along. We wanted the best medicine from the best researchers, and we wanted to do our best to support them.”

On the Web

Childrens Hospital Los Angeles:

Children’s Hospital of Philadelphia:

Children’s Oncology Group:

Christi Thomas:

New Approaches to Neuroblastoma Therapy:

Support for Christi Thomas:

Saturday, December 30, 2006

Holiday 2006

In a matter of hours we will arrive back home. It's been a wonderful whirlwind filled with fun, distractions, and sunny skies (and did I mention a lot of driving? hee hee). We are so grateful for the time spent with our dear family and friends. We'd like to thank our sweet hosts for housing us and for sharing their glorious sunshine state with our family. Being in another location for Christmas this year was incredibly helpful in easing our pain. I can't imagine how difficult it would have been at home with all of the memories and Christi's belongings literally surrounding us. On September 19th when we made that long journey home to break the news to Shayla one of the things we decided right away was that we could never spend Christmas at home this year. I'm extremely grateful that we were able to drive south. I was also able to read two helpful books friends sent to me. "Lement for a Son" and "After Goodbye" Thanks, Olivia and Caroline H. Thank you everyone for your kind help during this difficult time!! Tomorrow night we won't exactly ring in and welcome the new year, but we will make the best of it!

Enjoying Traci and Sanibel Island (Dec. 29th)
Shayla enjoys complimentary admission to the museum thanks to our COSI pass. In this tank she petted a: a sting ray, a horseshoe crab, a hermit crab, a kings crown and a sea star. It was great to have our very own science museum tour guide with us!!! Thanks, Hariett!
Hanging Out with sweet Traci
Dec. 28th: Fort Myers, FL with "Harriet"
Dec. 27th: Universal Island of Adventure
At Universal in Seussland with daddy, grandpa and grandma.The Thomas team meets Minnie at Disney World on Dec. 26th
With Grandma Nonee & Paw Paw at Disney's Animal Kingdom
Shayla & Angela having fun at Disney World, Dec. 26th
Swimming at the Nick Hotel in Orlando - Christmas Day
Christmas Morning at Nonee & Paw Paw's.
Singing "Happy Birthday" to Jesus
Taking a Christmas Eve dip with Daddy
Admiring the trail decorated for Christmas at the "Word of Life" outside of Tampa, FL.

Thursday, December 28, 2006

Brief Update

Thanks just doesn't say enough about how much gratitude we feel, but since I can' think of a better word, thanks for all of the kind words and thoughts that have been shared during our first Holiday Season without Christi. Shayla openly talks about Christi 3-10 times a day and Shayne and I end up having tears spill out at least once a day. We miss her more and more each day. We've been very busy in recent days trying to do unique things to help keep our minds off of the fact that one of our dear family members is "missing". I'll update soon. I believe it has helped. Additionally, I'm continuing with my "Christi is at a friend's house" style of denial which does indeed "help". It was denial which served me well during her four years of treatments so I'm trying to continue this way of coping. Last night I was pleasantly surprised to see this awesome picture / poem of the girls on another website and I was so deeply touched by the kindess of God's people. It's a lovely tribute. Thank you, everyone!

Monday, December 25, 2006

Christmas with the King

Baby's First Christmas (Dec. 1997) 7 months old (Christi - our Santa baby)

"Christmas With the King"

To my dearest family that I left behind,
I need to touch your heart tonight.
For it's Christmas and you're missing me,
And the season doesn't seem so bright.

While others are celebrating the holiday,
you find it hard to do the same.
You watch other families gather in splendor,
while you tearfully mention my name.

I know it was painful for you this year,
to decorate your Christmas tree.
For you cried as you hung each ornament.
Your thoughts were focused on me.

You shopped for presents for others.
Although you felt out of place.
When each day was over,
I could see loneliness written on your face.

You can't seem to get into the spirit.
To enjoy any festivities this year.
But think of the Christmases in the past,
and you'll feel my presence near.

Yes, and I come tonight to let you know
I'm happier than I could ever be.
I'm spending my Christmas in Heaven;
With the one who died for me.

So go out and feel that Christmas cheer.
Listen to the choirs as they sing.
And know that I'm happier than I've ever been...
Spending Christmas with the King.

Written by Kaye Des'Ormeaux

Christmas Eve and Christmas Morning - one short year ago

Christi's Nine Christmas Mornings

Merry Christmas, dear Christi! We miss you! We treasure the nine Christmas mornings we were blessed to share with you!

Baby's First Christmas (Dressed in her mini mouse PJs, 1997)
Not a Christmas Morning picture; however, I'm not finding one right now and this is CT at age one.
Christi age 2 (She loved that Barney banjo so much!)
Age 3 with little Shayla
CT age 4, Christmas morning
2002 (CT age 5, Shayla 3)
2003 (age 6)
2004 (CT age 7)
2005 (CT age 8) Christi's last Christmas here on earth.

Sunday, December 24, 2006

An Empty Chair This Year

Christmas Eve, Dec. 2001 (age 4) Shayne opens the window so that Christi can toss out carrots for Santa's reindeer.

December 2003 (Christi 6, Shayla 4)
Last year: Christi at her favorite spot "The Kids' Table" with her cousins(Dec. 2005, age 8)

An Empty Chair This Year:
December 24, 2006
December 19, 2006
December 22, 2006

Around the Christmas table
there's an empty chair this year -
the precious smile is missing
of someone we still hold dear.

And yet our hearts are hopeful,
though the season's bittersweet,
Because we know the one we love
has filled another sea.

For another banquet table abounds with joy and love
For those who've made the journey
to be with our Lord above.

Family Photo taken last December at Kayla's fundraiser.

The Thomas team would like to express their deepest gratitude and appreciation for all who so lovingly donated to the Christi Thomas Memorial Fund and / or to the Lunch for Life Giving Tree in Christi's memory this holiday season. Soon we will share how the Christi Thomas Memorial Funds will be utilized for many years to come and Shayla has been checking each day to see how many ornaments are hanging on Christi's Giving Tree. This morning it is an incredible 704! (That means over $3,500 was raised and will be used for neuroblastoma research. All together these precious kids, with thousands of loving supporters, have raised nearly $1 million to help fight for their little lives.)

Saturday, December 23, 2006

Dashing Off

I do believe this is my favorite Christmas picture of the girls. I bought their dresses on the 75% off racks the year before and just hoped all year they'd fit. They did and I will forever treasure this picture!

Today we will say goodbye to my dear sister and her beautiful family. One of the hardest things for me to "deal with" is the fact that Shayla no longer has anyone to play with. The past few days have been tremendous for her with three loving cousins to play with every minute of the day and night! Although incredibly emotional and difficult, we had a lovely time and soon - we'll be dashing off.

Friday, December 22, 2006

Mrs. Claus & Santa's Visit

Shayla's amazing Aunt Tina & Uncle Gil arranged to have Santa & Mrs. Claus make a visit to their home tonight. They were awesome and Shayla is convinced that it was finally the real Santa. Shayla was happy and excited, not scared at all. After sitting with Santa for at least fifteen straight minutes she asked Santa, "Was Christi on your bad list or your good list?" Of course Santa didn't even know who Christi was. He responded, "On my good list." Then Shayla continued with, "What was she going to get?" He responded, "You'll find out soon." Then Mrs. Claus must have figured it out and she came to the rescue saying, "She already has everything she needs and wants now." That seemed to answer Shayla's questions. Shayne and I could only chuckle and say how typical that was - Shayla wanted to check up on her sister to make certain she was good. So cute! I could see the tears upon Shayne's cheeks as he operated the video camera.

Much of the evening was pretty emotional for us. OK, the entire day was actually. After learning of Laura's death I called Shayne from my van so I could grieve with him in private. He kept commenting upon how very, very kind Laura was and that is so true. Our hearts are with the Stiles family. This afternoon I picked Ashley up from school and took her shopping. Traffic was horrendous which just made me realize how very much I enjoy living where we do! Tomorrow, we will dash off!

Great Memories: Cute & Funny
December 1999: Hayes Presidential Center (Fremont, Ohio) One Horse Open Sleigh Rides!
Baby's First Christmas (Dec. 1997) Pictured with Christi's Great Grandma & Grandpa Gear (Joe & Dixie)
Toledo Zoo Lights (Santa Visit with a Scared Christi in my arms, 2001 - age 4)

Love for Laura

Just seven days ago Shayne and I went to the store to find something from "Happy Feet" to send to a brave neuroblastoma friend, Laura. We couldn't find anything so Shayla and I looked again this Wednesday, but without any luck. Sadly, Laura's health took a rapid decline, this morning she earned her wings and we will instead be sending something for Laura's memorial. For the past few days I felt like the inevitable was coming and I've been "talking" with Christi and telling her that if Laura wasn't going to receive the miracle we had been praying for than to please make certain she is right there to welcome Laura home and to make certain she finds the pets area and all of the other kids. The girls were in treatment together at CHOP for neuroblasoma, and Laura also treated in NYC at MSK.

What is really strange is that late last night I read Laura's website and felt like she had slipped into a coma. Again I begged Christi to please be an Angel to help get Laura safely to her eternal home, to show her peace, love and a friendly little familar face. At 5:15 this morning I woke up and couldn't get back to sleep. Now I wonder if it was Christi waking me up to assure me that yes indeed she was there for her friend who died at 5:22 AM and she was on her way to take her to Heaven.

This picture was taken a few weeks ago. I know Buttercup continues to grieve for Christi and I am willing to bet Laura's cat will do the same. Please keep Laura's family in your prayers. They are a wonderful family and our hearts are broken over their horrendous loss of lovely Laura.

Christmas Time: The girls are sporting more lovely Christmas dresses - nearly all purchased at garage sales, but don't they look lovely!

PHOTO: 3 1/2 year old Christi, I mean "Rudy" - note the sticker on her nose. She LOVED pretending to be Rudolph! (December 2000)

Shayla and I stopped by the cemetary yesterday to wish Christi a Merry Christmas. We were plesantly surprised to see a new gift left for her by a sweet fellow S.E. 5th grader. On the back she wrote, "I miss U Christi." It was a lovely Angel statue and Shayla asked if we could take it because it might get damaged out in the cold weather. With our new guardian angel in our van, the two of us had an uneventful 3 1/2 hour voyage to my sister's. Shayla is now in all her glory being surrounded by three awesome cousins to play with!

I was able to chat with my beautiful niece, Shelby, as I took her shopping late last night. Our conversation started when I missed my turn and had to turn around in a cemetary. We said a prayer for all of the deceased souls before I headed back out. Then she freely told me how she talks to Christi and about how they shared a special bond and really had a connection. She went on to tell me about some of her dreams she's had since Christi died and some other things. It was incredibly comforting to me. They were incredibly good friends!

Today I will give Christi's cousins each a book from her bedroom. Shayla also has selected a small item from Christi's room to give to each of the kids. Last night I returned the blue ceramic unicorn statue Christi painted with Aunt Tina when she stayed here with her in July. First on our agenda for today however is going to watch Shelby's school show and then I'm picking Ashley up early to take her on a special shopping mission!

Shelby meets Christi for the very first time, days after Christi's birth. (May 1997)
These two girls hit it off early on. (Strangly enough this picture was taken 8 years to the day before Christi died.) Shayne is holding Christi (left) and Shelby at (my cousin) Lora & Chris's wedding. I feel bad about Christi dying on their wedding anniversary, but perhaps Christi picked this special day. (She had a good time at their wedding! I know I have memories of it - all thanks to the photographer....."Where is that child's mother??" was said in reference to Christi running around while Shayne was "caring" for her and I was(pregnant with Shayla) and visiting with my aunts.)
Shayla's birthday (Shelby, left. Christi, right) Photo 2001
Christi's fourth birthday (May 2001)
Last Christimas (Dec. 2005)