Some Tough Ones

(PIC: May 2004, joking sisters!) While I try not to follow too closely, because it is so sad, our earthly world lost a couple of very special ones. Emily (a twin, oh how this disease likes to strike twins) died on Chrsiti's birthday, May 12th at the tender age of seven - her twin sister now scared to sleep by herself. Spencer died today. Diagnosed around the same time as Christi, I exchanged many emails with Spencer's dad. And for the final kick in the pants, research has recently discovered that the shots (GCSF) Shayne used to give Christi in the hospital (with great anxiety for all, but Christi only wanted Daddy to do it) MAY actually increase tumor growth according to a recent study. Oh, I'm terribly, terribly sickened as I remember many tears and her great fear with each and every shot she had to get; poor little thing probably knew it was making the cancer grow even faster! Oh, why, oh, why, oh why????!!!!!!

Emily's Site: http://www.caringbridge.org/fl/emilyadamson/

Spencer's Site: http://www.caringbridge.org/canada/spencer/

What would we do without Shay?
She loves animals, just like CT

6th Annual Christi Thomas Poker Run

Much to our surprise and delight, the "Friends of Christi" are again holding a fundrasier for the Christi Thomas Memorial Fund by sponsoring a Poker Run.

The 6th annual event will take place on Saturday, May 31st. Registration is from 10AM until noon. The motorcycles will head out at noon. The registration location is at the Tiffin Moose #846 located at 1146 N. State Route 53, Tiffin.

Stops along the way include: Town Tavern (Clyde), Cove Inn (Whiteslanding - on Lake Erie), Legendz (Fremont), Blue Eagle (Bettsville) with the return back to the starting location at the Moose Lodge. The cost is $10.00 per person which includes dinner, door prizes and music. For those looking for a great inexpensive dinner (only) the carry out meals will be $5.00.

Top Hand for the Poker Run will be $250.00 with the 2nd hand prize of $150 and the third $100. Music will be provided by "Five Finger Dizcount". We hope you can attend!

It's Genetic!

(Christi, "Grandma" Donna holding Shayla, on Christi's 5th birthday - May 2002)

Our deepest thanks to many who helped us through Mother's Day and Christi's Birthday. Although it was anything but a "celebration" the Grants sent us TastyCakes from Philadelphia (Christi loved them) and I shared them with my teaching colleagues the next day in honor of the birthday. Shayla's teacher grew up in Philly so she was equally excited. We received some lovely cards, donations were made to her memorial fund and a friend of Christi's (who happened to be a boy) left the sweetest message on our answering machine, much to our shock and delight! Thanks to all who helped us by letting us know you care! Your love means so much! THANK YOU!

Right before Christi's birthday, a sweet blogger keyed me in to some breaking news about neuroblastoma. The next day we heard of this wonderful news from Dr. Maris. I can tell you that the news was VERY comforting to me! Doctor Maris and Dr. Kushner, Christi's NYC doctor (and others) discovered that neuroblastoma is caused by genetics! That news I can handle! If it would have been determined to be environmental factors, I don't know how I'd be doing today. I had hoped for so long, it was caused by a genetic fluke - and it is!!

For YEARS, I have wondered and worried that I did something to give Christi cancer. Everything I read, did not have an answer, but lead me to believe children's cancers are not usually environmental because the children are so young. Despite that information, I still wondered if I ate or breathed something wrong when I was pregnant, or if I pushed her stroller where they were spraying pesticides when she was a toddler or what. My mind went on and on and on. I vividly remember a conversation with "Angel" Emma's mom at the Ronald House in NYC about this. We thought one day we would know, but I really did not think "one day" would be SOOOOOOOO soon! I do feel like there is a weight off of my shoulders. (And it's such a fluke, there is no need to test Shayla.) Now, we just need to find that cure! Hopefully, once again, "one day" won't be so long!

Here are some articles and a great little video clip, showing Dr. Maris and Anna taking about this new information! (Alex Scott is also featured!) Christi treated with Anna in NYC and we met her and her family in Chicago. She was her high school Valedictorian and has been battling this disease since she was 18 years old! (Neuroblastoma goes very slowly in adults.) Best wishes to Anna! Thanks to Dr. Maris and all! It's Genetic! I rejoice!
http://cbs3.com/health/Health.Alert.Neuroblastmoa.2.718393.html (You can also click on the title of this blog post "It's Genetics" to bring up this article and video clip. It's really well done!)

http://content.nejm.org/cgi/content/full/NEJMoa0708698?query=TOC (article)

Thoughtful Discourse

I most likely shouldn't post this since I did not ask the 16 year old author for permission. Her beautiful mother, my friend, mailed a copy of what appears to be a journal entry and I thought it was incredibly sweet and thoughtful. Is the reason I'm not asking for permission because I do not want to stir up or bring up sad memories for others?

Sunday, May 14, 2006: After Christi’s party last night, my heart was nearly breaking in two. It hurts me inside to think of such a perfect, beautiful young girl. The cancer has spread throughout her entire body. Could you even imagine? Not having the chance to grow up, and drive a car, date boys, be silly with your girl friends, play in the park with your dad, get nervous about tests…anything? It’s unfathomable.

I watched last night as Christi sat down with her plate of snacks and closed her eyes to pray over the couple carrots sticks, cake and ice cream. From my seat, I felt like the world slowed. Everyone else was rushing around and laughing and I was sitting and watching her. She prayed quietly, her lips moving to herself, then put her head up and cracked a joke with one of her friends. I just stared for a moment. I don’t understand sometimes why life is so unfair to those who deserve most to live life to the fullest. Do they really deserve to be punished by God? Or does he have a bigger reason for their lives? I just can’t even begin to ponder about it. She’s so beautiful and my eyes burn at the thought. Why her? Christi blessed her mother’s life so. I know Angela counts every day with her daughter a blessing.

Mother's Day 2008

Shayla made Mother's Day special, as only a child could! In the morning she gave me the gift I knew was coming. (Having taught in the primary with her teacher for about 15 years, and having Christi with the same teacher, I was certain it was the lovely homemade construction paper flower bouquet those 3rd graders make every year and it was!)

What Shayla did not know was that Christi absolutely hated her gift to me that year so she hid it under her bed and made me something different when she was eight in 2005. I loved it and didn't understand why Christi didn't like it, but Christi said she messed up on it and it was terrible. Little did she know I got it out from under her bed and I myself hid it in a bathroom cupboard until about 4 months after her death. Ever since then, her bouquet of flowers has been sitting in my NYC cup in our bathroom. I knew it would eventually get faded and destroyed in our bathroom, but I was willing to have that happen to get to enjoy it for a bit. This morning I realized just how faded Christi's is and Shayla loved hearing the story about her sister.

(PICTURE: 2004 in my old kindergarten classroom after school) Christi got me good Sunday! There was no way I knew I could make it out to the cemetery on Mother's Day or her Birthday. Because of the incredible amount of work I have to do for my final classes right now, and the large amount of laundry I needed to catch up on (We recently had to put in a new well. Thankfully, our water problems are now over and I'm no longer showering at the YMCA in the mornings, but it was a long, crazy, expensive month!) we drove separate to Carey to take my mom (Nonee) and Joe out for lunch. (If you are close by, make a trip to "Moreno's" downtown. It was fabulous!!) I didn't know the way so I followed Shayne. He was then taking Shayla off to Crestline to visit with his mom (Nee Nee) and grandma while I headed back home to study. I said I would follow the TomTom (GPS) Shayne's mother bought us for Christmas and see how that sent me back home. About 15 minutes into my journey, I realized I was going to go right past the cemetery. How could I drive by and not stop? Never. I pulled in, chuckling to myself that Christi tricked me into coming to see her on Mother's Day, despite the cold rain and the fact I was muttering to myself, "I should be visiting my grandma's grave NOT my daughter's!! This is so wrong!"

Shayla & Nonee (Mother's Day 2008)There was another sweet, sweet surprise that really got to me too. In my van, I had flowers to put on my Grandmother's grave. Pushed into the ground on Christi's place were the same, exact flowers I bought for Grandma!! Wild, eh?! Christi & Grandma have matching flowers! I have no idea who was the sweet angel on earth who put them there, but thank you so much! (They were not there late Thursday afternoon.) Oh, I could hear Christi giggling and that is a wonderful thing because I sometimes worry that I will forget the sound of her giggle. And what a great giggle she had!!

Happy Eleventh Birthday, Angel Christi

Christi, on the morning of your birth, it was a glorious celebration! Today, you celebrate in a Heaven with God and all of the other souls you fly with. It often seems like I just miss you more and more every day, sweetpea! Love, Mom

(PICTURE: September 2005. Christi & Shayla playing at Kalahari Water Park, Sandusky, compliments of Tom & Lori)

Double Whammy

Work was a killer on Friday. The sixth graders returned from camp and I couldn’t shake the feeling that we should be whisking off all of the girls for a 11th birthday celebration – something grandiose that would last all weekend as we starting doing after Christi was diagnosed. Additionally, my sweet colleague was talking about her daughter’s birthday celebration, as her daughter’s birthday is two days before Christi’s. I do not think she knows about Christi’s bday on Monday and I just smiled and asked her questions about all of the festivities.

Friday night led us to the barn to work with Skeeter. (Thankfully, Shayne is home and is on “horse duty” because quite frankly, despite my good faith efforts, the 1,000 pound animal is just too much for me!) It was at the same barn, two years ago, where all of the girls from Christi’s class gathered to ride horses and celebrate her 9th birthday. It was wonderful! That, combined with the cold, damp weather, made me go sit in the van and put my head back for a while. I’ve not been sleeping well and I was able to doze for a bit. I know things will get better, but right now it’s like I’m haunted and consumed.

(PIC: Christi with some of her friends at her 7th birthday party. Did we really rent The Ritz and fund a puppet troupe from Cinci?! You bet! Would we do it again if we could - YOU BET!! She was worth every penny!!!)Saturday, we went to a Horse Show at the fairgrounds so Shayla would learn what she will have to do in July. It lasted for hours and she had a ball. (I enjoyed watching some of our school's students ride and give Shayla some pointers.) At the fairgrounds over the weekend, we were able to see a couple of Christi's sweet classmates. They are so sweet! They came right over to talk with us! Returning home Saturday evening after attending a fundraser for a sweet lady who helped out at many of Christi's fund raisers, I found the sweetest phone message. One of Christi's freinds call to say he was thinking about us. I absolutely coldn't believe it. I sat down and cried. God's people are amazing and are continuing to get us through!

Perhaps if Mother's Day and her Birthday weren't back to back, it'd be better. I feel like this is a double whammy, yet I do indeed count my blessings as I know I have more than most!! Additionally, I think what is so hard is that the days fell exactly as they did back in 1997. Mother's Day was on a Sunday and Monday morning at 8:13 AM, the 8 pound 4 oz. perfectly healthy baby Christi was born.

FUNNY: I'll never forget Mother's Day of 1997. We took our moms out for a buffet dinner. While waiting in line, the carver held his knives way up in the air and loudly sharpened them, right in front of me, the one 9 months pregnant going in to have a C-Section in the morning (because Christi's was breech, just like her sister and father). I couldn't eat much then as I worried that the doctors would be doing that in the morning before they sliced and diced me like the ham to get Christi out!