FU_NB06

This post is in honor of a brave little girl named Christi Thomas. I became very familiar with her while I was not working during the summer and had more time to check in our fellow Neuroblastoma warriors. Well, to put it lightly, she was not doing well. I would check her families blog daily and would cry my eyes out every single time. David would always wonder why I like to read it if it makes me cry and I would always say that I need to go show my support to this special little girl. Even though I may have never met them, we are connected forever because of Neuroblastoma.

And now to get back to what the title of this post is about. Here is the story directly from Christi's web site. When you are done reading the below entry from Christi's site, if you have the time and the kleenx around, please go to her site and read all about this amazing little girl who has inspired MANY!! =)

Here is the post from yesterday :

She gave so much, and now will continue to give!

While Christi was on her death bed at CHOP in September, Shayne asked Dr. Maris if they would try to establish her cell line after she died. Dr. Maris looked down and paused. It took a bit for him to regain his composure, then he responded, "I've never had a parent ask me that. You don't need to do that. Of course we would be honored to try to establish a new cell line from Christi's disease." I'm so grateful Shayne had the wisdom and foresight to inquire about this. The best time to get a new cell line to grow is when the body is heavily burdened with disease and very soon after death.

We signed the paperwork and days later, about thirty minutes after her death we sat, cried, laughed and chatted through many tears as they drew large amounts of blood from her tiny, fragile, pale body. We knew Christi's NB had seen all of the front line agents and since she lived solely on experimental treatments from March of 2003 on, her cancer was exposed to nearly all of the current clinical treatments available too - yet nothing worked. Certainly there has to be something that will hault this wicked demon!

We knew trying to establish a cell line would be the very last thing Christi could possibly do to help others and if it worked it would be something that would continue on and on.....until the cure was found. We've prayed that her cell line would grow so that the could try to cure others, even though she succumbed. We knew Christi would want to help in any way she possibly could! This ties in directly to the $12,000 she raised with her "Alex & Christi's Lemonade Stands." Knowing Christi she would have joked with her beautiful little giggle, "If I'm dead, then it won't hurt and I can still help others with NB! Let's go for it!" This was the very last thing she could possible do to help contribute to the search for a cure for NB.

Today we are thrilled beyond belief to learn that, even though there was only a 20% chance of it working, Dr. Maris informed us that they did establish a new cell line and they will be able to try many different agents on it over and over again in the future to try to kill the cancer cells. We hope this helps reach a cure for all individuals currently fighting and yet to be diagnosed with neuroblastoma and other forms of cancer! With Angel Christi now assisting in the labs, the cure can't be that far down the road (smile).

Dr. Maris liked the name (presented in proper research study form, of course) Shayne gave it back in September (FU_NB06) and Maris told us, "If it grows, that's what it will be called." Nurse Pat Brophy commented, "I'll have a hard time reading all of the research reports without laughing." We think there couldn't be a better name for this evil disease that took away our precious Christi and now causes little Shayla to ask, "Am I still a sister?" F@#K You Neuroblastoma!

Although the news mad me cry today, we now take a bit of comfort in knowing that Christ's legacy of helping others will live on through the work of researchers doing science (one of her favorite subject) trying to cure hundreds of NB patients diagnosed every year around the globe. If we could do anything to prevent another family from experiencing the anguish we've had, we would!

While the news is tremendous for the NB community, I actually found myself very sad many times today. I think it is because I've lived on "hope" for so long. This was the very last earthly thing I was still holding out hope for. Thankfully, our wish came true; yet, now there is nothing I can still hold out and hope for.....and when (hopefully not "if") it is determined which agents will actually stop this beast that took her life, I think it'll be bittersweet too. (And if they discover that curing her would have involved something harmless and simple like vitamin C, seaweed and a dap of vanilla........ then I'll really be brokenhearted.)

Her legacy lives on!

Dr. Maris said:We were successful in creating the FU_NB06 line. We decided to pool our resources and go for the line in one place, and the cell line was generated in Dr. Reynolds lab in Los Angeles. The line will be available for research studies in the next week or so.

We will use some of Christi’s preserved stem cells (a test vial) to have a matched set of DNA—this is important for our research.

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Angela, Shayne and Shayla are amazing to me and I'd love to meet them at our annual Neuroblastoma conference in Chicago during the month of July. I only wish I could have made it to the previous conferences so I could have met the beautiful Christi. She reminds me sooooo much of Isabella.