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:
http://www.advertiser-tribune.com/News/articles.asp?articleID=5702

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

By Jill Gosche

PHOTO COURTESY CHOP

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:

www.childrenshospitalla.org

Children’s Hospital of Philadelphia:

www.chop.edu

Children’s Oncology Group:

www.curesearch.org

Christi Thomas:

www.christithomas.com

New Approaches to Neuroblastoma Therapy:

www.nant.org

Support for Christi Thomas:

www.christithomas.blogspot.com