Journal Entry

Saturday, October 19, 2002

Hello Family and Friends! Thank you for your continued kindness and blessings. We would not be doing so well without you pulling for us! Thanks, thanks, thanks!!!!

We're back here at Children's Hospital in Columbus, Ohio and doing extremely well we believe. We came here expecting to get more bad news or to have something happen that we were not prepared to encounter and that has not (yet) happened. Christi slept the entire two hour drive down on Tuesday which was a total blessing. (no car sickness!) When we were in admitting, Christi told the clerk that she was going to work here when she was older. She explained that she is going to have rooms here at the hospital where she will take care of the kids' pets while they are hospitalized. Missing her kitten, Buttercup, has been a big deal this trip. "I miss Buttercup." is said many times each day. Christi was happy to get the "Tiger Room like my school!" she said as she walked in. (There is a picture of four tiger cubs above her bed - very cute!)

We dropped Shayla off at my friend, Shari's house early Tuesday morning. She was taking care of her until Thursday when my mother was able to take over. Shayla was very exciting about going to Mrs. Depinet's so that helped to make an incredibly smooth transition. Shayne told me that he wanted to strap a video camera to Shayla's head to find out exactly what is so exciting at Shari's house! She always loves it there and we know she's in great care and that is a tremendous comfort.

Christi is handling this second round of chemo. mix very well. She's had some pain and discomfort; however, nothing like last time when she was also dealing with surgical pain and overwhelming anxiety. She has not had one bad dream. (Thanks for the dream catcher from Phoenix Aunt Vaunie! It's doing the trick so far!) Her eye lashes are starting to fall out in clumps. I never before realized how long and thick and beautiful they were. Now they're about 50% gone. yikes! I wasn't ready for that one, but it's going to be ok! She continues to eat well. She put back on every pound she lost last month so we were thrilled about that. Shayne and I have added some pounds too. (We'd hate for Christi to think we were not in this fight with her! hee heee!) Shayne did joke with the nutritionist, "If there's one thing this family is good at - it's eating!!" He found "Shane's Deli" down the road so that has been nice. I've tried to quit eating Christi's left over food. We had sushi one night from that deli in honor of our Japanese friends across the world who are pulling for Christi. It was a delicious treat!

Shayne attended the visitation for his cousin, Joey on Monday. He felt absolutely horrible that he could not be a pall bearer for him as Joey's wife asked him and he desperately wanted to. Shayne just knew he had to drive us down and to be here at the hospital during this treatment. Ten days before Joey's death, Joey sent us the sweetest email full of concern and prayer for Christi. We try to find comfort in knowing that he protected our country for years and now he's in heaven protecting Christi as she fights this beast inside her. I had planned to go down to the gift shop to purchase sympathy cards for the family, but I haven't been able to bring myself to leave this floor - J5 yet. I think I'm afraid something bad will happen or she'll need me and think I'm not there for her. We've had many, many talks lately and I've convinced her that I'll always be here for her and that she'll always be in my heart and nothing can ever take that away. I am thankful to have this time together knowing that more than likely it is our last time to spend with this precious child. My heart aches for Joey's family knowing that they didn't get the same opportunity as he died so suddenly.

Randy Walker (co-founder of Hope Street Kids) came to meet with us. His beautiful young daughter, Caroline Pryce Walker, passed away from Neuroblastoma in September 1999. He along with Caroline's mother - Congresswoman Pryce created this organization in Caroline's memory. They've raised two million dollars and have put $1.5 million into the hands of researchers to help with childhood cancer. He was absolutely incredible with Christi and then met with Shayne to answer some of our many, many questions. Praise the Lord for Mr. Walker spending time with us (and for those awesome chocolate covered pretzels! Wow!!) I know the visit had to be extremely difficult for him knowing he was in our shoes a short time ago. I so wish they would have had a different outcome. It is not fair that this cancer takes so many children who have so much living to do.

It's odd that we're here in Columbus this weekend with chemo treatment. We had planned to be here with the girls this weekend. (COSI Saturday morning and "Boo at the Ballet" on Saturday afternoon.) We're making the best of it here - always trying to stay upbeat and positive. One of the Doctors stopped by to tell me how nice it is to see such a colorful and brightly decorated room. (I sort of got crazy decorating the place again. It's the elementary teacher in me - Give me a roll of tape and I go nuts!) I told him it was good therapy for me and he said, "It's good for everyone. Everyone around here, not just your daughter." He also told me I've rubbed off on other parents because he's never seen so many doors decorated now and I've started a great trend. (This was a doctor speaking - not house keeping. Hmmmmm. Bet I'm not making housekeeping's Top Ten Favorite Parents list! Oh well! hee hee)

Shayne has located an extensive medical library here in this complex in the education building. He's been able do further reading. At first the librarian asked him, "Do you have a medical background?" when he was asking for reading material. He said, "Yes. I've just completed a 30 day residency in J5 as a father." and she showed him to the appropriate area. :-) I'm thankful we've been together hanging out together as a couple for so long. (since 1983) I think it's really helping us. After being a couple for the past nineteen years, we can definitely read each other's body language and that has been extremely helpful dealing with the different situations that present themselves here. We're team players and that has been put into play time and time again here.

I still wish this were happening to me, instead of our sweet little girl. I'm 34. I've lived a great, full life. This certainly does not seem fair or allow me to make any sense out of it. Yet, I remain hopeful. The odds are definitely against us, but we continue to believe that she can beat the odds. We have great faith and tremendous hope. Without that I don't think I could lift my head off of the pillow each morning. Because of it, I can! And because of it we're trying to make every day a party (at least while we're here in the hospital. We keep joking we're having so much fun that they'll probably be transferring us out to another hospital. It does sometimes seem like we're living in a college dorm room - or possibly a space pod together. It seems that every family up here has the same story to tell. Child appeared to be perfectly healthy. Misdiagnosis, after misdiagnosis and then finally a discovery of cancer. ugh. I remember the days when I thought that if one of the girls had an ear infection it was stressful and worrisome. Little did I know or ever expect this.

Disease: Neuroblastoma - stage 4
35% chance of living 2-5 years
5-15% chance of long term survival

Currently: We hope and pray that the tumor is responding and shrinking; therefore, this treatment protocol can continue and that the side effects (deafness, heart problems, kidney failure, etc. are kept to a minimum.) Those tests will be conducted before the next round. Next steps: Harvesting her stem sells (November) to be frozen at OSU and then rein fused in her later (probably Feb. - March). Another round of chemo in three weeks - tentatively Nov. 11. Surgery to remove this ugly beast that has completely encircled her aorta - perhaps January. Radiation will begin after this first three chemo rounds stop. A bone marrow / stem cell transplant. More chemo. following that. Of course this is all speaking in general terms and it's killing two parents who are used to living by calendars, Franklin Planners, schedules and agendas and who are used to being fully in control of the situation. We know so much depends on how her body handles this all and how much infection sets in to set us off schedule. We are not in control, God is. And it's His will be done, not ours. (We just hope that we're on the same page!)

Eric, the Christi Thomas Spirit Club Volunteer Webmaster, has added some more of Christi's art under ART LINKS if you'd like to view a few of her recent creations. thanks, Eric!!!!

You've all been such a comfort to us and have brought us many smiles and TONS of hope. Thank you!! May God bless you and keep you safe. Take care! Happy Sweetest Day!!


Christi's Joke: Why didn't the skeleton go to the party? He didn't have any BODY to go with him. (hee hee!) She actually said that to a 4 year old boy who walked past us in the hallway and who was wearing black sweats (pajamas I think) with a skeleton printed on them. He just kept walking and Shayne and I tried very hard not to laugh out loud at her joke. She's a riot!