More FU-NB-06 News & Music Program

From Dr. Reynolds in Los Angeles:

Thanks very much for sending the Internet link to "Science Magazine's" article. It's a beautiful story. The print version came out today, and it's nice to see the Thomas clan photo in the journal.

I took that issue of the magazine into the lab to show the techs, one of them pointed into the hood at the 2 large flasks labeled FU-NB-2006 she was working on. She was preparing to test some new drug combinations on Christi's line, work that will provide us valuable information.

Thank you Angela, Shayne, and Christi for yet another contribution to research on neuroblastoma.

Dr. Reynolds


Our prayers are with our very special neuroblastoma sweeties as many of our closest friends are currently facing their most difficult times ever. May God grant them peace and comfort.We have met some of the most wonderful and fallen in love with their precious little children. It's so hard to learn of their suffering and to now be so far away from them.

Yesterday, Shayla and I went out to the cemetary after my traction (which I think is helping) we were surprised and delighted to see a few items left for Christi - a cat statue, Christmas ornaments and a beautiful boquet of fresh yellow baby carnations. We decided to bring home one of the Christmas trees as well as the ornaments and the cat statue. After we finished our prayers, Shayla said, "I love you, Christi." It was just precious. I wonder what all she thinks. My heart continues to hurt for Shayla as she leads this new life. As we drove to Toledo for her vision therapy (which I also believe is working - her grades and her reading is greatly improved) I told her I never asked Christi what she wanted for her funeral because I was afraid to talk about it for fear of scaring her although we did talk about what "signs" we would send each other from Heaven. I told her that I thought she'd probably send me cats so if a stray cat ever appeared, I'd probably wonder if it was a "hello" from Christi. She told me that she thought I would send her flowers if I died first. She said, "If I walk into a room and it smelled like flowers, I'd think it was probably you saying hello." Shayla said that Christi asked Shayla what she would send her if Shayla died first. Shayla said I told Christi, "I don't know. I never thought about it." Oh, the things cancer makes one ponder!

Jan. 11, 2007
Shayla at her school music programTonight was Shayla's school music program. Since Christi's class wasn't involved, I was fine. It was wonderful to see all of the darling kids in grades k-3 perform their little songs and dances! Shayla LOVED it too!
April 2006: Christi & Shayla carry "Daisy" across the street after Christi's Spring Music Program. Shayne's very old stuffed lion was used as a prop making Christi so happy!

A year ago today Christi was in the midst of the hu14.18 antibody trial at CHOP. Some of our closest moments were made. I treasure those memories of when she was feeling well and we were able to do "fun stuff" or just talk. Because of the years of trial and knowing all that was at stake, Shayne and I formed a very, very close bond with Christi. While I was with her, Shayne's mom had moved into our home to help the two of them get along without us. We are so blessed to have the help of many friends and family members.
Jan. 11, 2006: hu14.18 antibody trial at CHOP - not a breeze for Christi
One year ago today, waiting for the 2nd day of treatment to begin.


FUNERAL FUNNIES:

I learned from other parents that you want your child’s funeral to be absolutely perfect. You know there will be no graduation party or wedding to plan, so this is it. Well, it came true for me as well.

When Christi’s disease had progressed in July of 2005 we knew that in most cases, her days were numbered. I figured we had 8-12 months and thankfully we were blessed with 14 months! In the fall of 2005, I forced myself to started working on funeral arrangements and I contacted the Trauneros to assist me. (I had always hoped we never would need them and years later they would just send me a bill for wasting their time and I gladly would have paid it, but……)

I knew I wanted to have a horse drawn hearse since she took horse back riding lessons and loved horses so much. I also thought she was like our adored little Princess and that it would be fitting. I put Andrea on it and she located a black one about 30 miles away. I said that was fine, but I was envisioning a white one for my Princess. Therefore, Andrea was set back to work and she located a gorgeous white one in Kentucky and told me that they were willing to let us borrow it, and would only charge us the mileage. (God's people are good!) I figured I wouldn’t be paying for college or a wedding and I wanted “the best” for Christi, any price would probably have been fine with me. I thought she was deserving of the very best even after she was gone!

On the morning of the funeral I was running late as I had one of my former students pin up my hair and it took longer than I planned. While I was saying goodbye to sweet Christi, Andrea came up and whispered to me, “As soon as you’re ready we need to have a meeting.” Hmmm. That didn’t sound like good news. With "time a ticking", Andrea sat everyone down and told us that there was a problem getting the horse drawn hearse. My heart dropped.

She told us that at 1:00 AM, they received a phone call from the people in Kentucky saying that the roads were closed and they couldn’t make it up with the hearse. Well, Andrea didn’t believe them and she called the State Highway Patrol where she learned that yes, Kentucky had had terrible storms and rain and road were indeed closed. Therefore, at 2:00 AM, Andrea called the sweet people who had the black one, since they were going to be providing the horse to pull the white one anyway, explained the situation and asked not only if they still had it but could we use it and could they also transport it to Tiffin. They told her it was out in the shed, it wasn't cleaned up at all and it had never been used for a funeral before, but they’d try and at 2:00 in the morning, they started washing it up.

Shayne told me, “I can’t believe how calm you were,” when Andrea dropped the bomb. I knew, like many things with cancer, it was simply out of my hands - why get upset? Shortly before we left the funeral home, Rich told us that they also learned that it was not a full sized hearse so even if it made it we wouldn’t know until the pallbearers actually tried to put her in the hearse if her casket would fit or not. (Oh, dear.)

Just before going to church, Rich informed us that the hearse was indeed arriving in Tiffin and I knew we would just have to hope and pray that the casket actually fit in it because how embarrassing if it stuck out the back and the doors wouldn’t close! (If that were the case, Rich was going to dismiss people to their vehicles behind the church and the pallbearers would have switched Christi back to the motorhearse.) After the funeral mass, Shayne and I came down the steps in front of Christi’s casket, Rich told me he measured and it’s going to fit. He only said, "Now we just need to see if we can actually get the doors closed too.” Before we left for the cemetery, the amazing Rich stuck his head in our car and said, “She’s in!” I said, “Yes, but will the doors close?” He said, “Oh, yes. I’m just going to give her one tiny push yet and they’ll close just fine.” Whew!! I'm so thankful it all worked out. I think the horse drawn carriage provided the finest touch and allowed the hearse, which had only been used for parades in the past, it's first royal funeral! (Smile).