Jan. 9, 2006 (Bonus Day!)

OLDIE BUT GOODIE:
One of my favorite photos! This is when Christi "fixed" Shayla, our little chatterbox, (by putting a bandaid over Shayla's mouth). I was in the kitchen when they came out to show me and Christi proudly declared, "I fixed her!" I nearly fell over laughing, and could only get out, "Wait! I need to take a picture!" (Summer 2001: CT 4, Shayla 2) Surprisingly, Shayla loved the attention she received from her big sissy, Christi!

I've been getting much better about not calling Shayla "Christi". I often mixed up their names and still a few weeks after Christi died, I was accidently calling Shayla by her sister's name. I still struggle with "Sissy" which was a name I called both of the girls. Now sometimes "Sissy" slips out and that's a really odd name for a sister without a sister here on earth! Crazy!

Christi joking around while waiting for the CHOP employee's shuttle to take us to CHOP early on Jan. 9th - the day she was to begin the antibody trial. I had the shuttle time wrong and we waited on that inner city street corner for a very long time. I was nervous, but she never knew that and she just kept making jokes about where the shuttle bus may have gone instead of coming to get us! She was always such a great sport! Although I know it started much earlier, I consider this to be the beginning of her downward spiral with her failing health.

This was when someone accidently put the vials in the fridge instead of the freezer and more medicine had to be overnighted from another state. Dr. Maris was very upset, but so professional. Christi received a six hour "pass" and I treasured that entire day. It was like receiving a bonus day of life. I remember walking hand-in-hand with her that warm January day, feeding the birds, getting ice cream and taking in the Narnia movie, and visiting the used bookstore - all the while knowing that the trial she would start the next day could kill her and it was perhaps my very last day left with her. I know someone at CHOP was reprimanded for their mistake; however, they'll never know how very grateful I am for that extra day I got with my sweet Christi. What I wouldn't do to be able to relive that one blessed day with CT again.

The last day I ever braided Christi's hair, Jan. 9, 2006. I knew she was going to have to be in that hospital bed for about a week and with her hair, which tangled so easily, we decided that braiding it would be the best thing. Little did I know she'd progress right through the antibodies and would be bald by the end of the month due to the intense chemo. I'll never forget her being in such horrible pain, learning she'd have to have more intense chemo and saying to me, "I'm just so sad". I've been haunted by that February day so much in recent weeks. It was one of the few times I ever saw her really, really sad.

Things are really coming together with the Christi Thomas Memorial Fund. I'll soon be sharing the news! Thanks for checking in!

Unlike Christi who really wanted to sell Girl Scout cookies, but who was too timid to call or go ask anyone unless they asked her first, Shayla has been into selling the cookies for her Brownie troop. She’s quite a little salesman and has sold nearly 55 boxes!!

Tonight was Shayla’s first time since before Christi was diagnosed to return to swim lessons.

After school today I went for my first session of traction. I was pleasantly surprised that it did not hurt at all and they treated me so well. The gentleman who worked with me also worked with Christi's foot when she had her little ballerina problem back in 2004. When he told me he's been keeping up and that he has Christi's picture hanging up, I was very touched. (Thanks, Terry!)

If anyone has any poem or quote ideas for Christi’s cemetery plaque or whatever it is called to mark her grave, we’d love to hear them. It’s a metal plate, no stone but we will be able to have her picture and a few other (brief) items put on it as well. I want it to really be special and to symbolize her life, yet I do not know what should be on it. I am thinking perhaps a picture of her in a ballerina outfit and maybe a drawing of a butterfly, perhaps the one that was included in her funeral booklets.

I’ll include that link soon as well as the poems read by her friends at the funeral at a later time. I will also write about a few "funeral funnies" and I also hope to write some of her entries I've come across in her diary. I'm so grateful God blessed her with incredible talents at such young ages. Otherwise, she wouldn't have been able to write and to share with me like she did. Thank you, dear Lord!