Journal Entry

Tuesday, January 13, 2004

"I'll take all the lows - they allow me to enjoy the highs at a whole new level. That mountain feels so good at the top when you've been to the bottom, to the depths of despair." Halle Berry

While not a TV or movie fan at all, I am a Halle Berry fan. I met her when we were both high school cheerleaders in Ohio. I'm glad I have a picture of just the two of us together. I remember her being very genuine sweet and beautiful. When you're 17, you never imagine how your life will change from what you plan and that your life really hasn't even started yet. And I never would have imagined for either of us to live the life we now live. We've been to the bottom, now the Thomas Team is looking forward to getting to the top of the mountain - somehow.

Anyway, I knew I felt horrible, but I thought it was the devastation of the bad test results and the dread and anxiety of the long drive home, little did I know it was a bout of the flu that set me back (and unfortunately delayed our trip home) a whole day. We arrived home early Sunday morning and the girls were thrilled to be reunited with their beloved cats, toys and books. Shayne and I were physically and mentally exhausted, but very glad to be home.

Back in Philly, as soon as Christi learned that she was going home she inquired, "Can I go back to second grade?" I told her yes. She was THRILLED!!!!!!!!!!! Soon she asked, "Is it really okay? Do you think you should ask my nurse or something?" (She's usually so trusting. I was set back!) Therefore, approximately 24 hours after our arrival back home, Christi was set to go to school.

"My school! My school! I love this place!" I heard shouted up from the back of the van as I pulled into the school. Christi was THRILLED to be back!! It nearly killed me to walk past the kindergarten room and to catch a glimpse of a few of my precious students in the room knowing I was not mentally nor physically ready to return as their teacher - yet. I hugged a darling smiling one tight out in the hallway, told her I'd probably be back next week and quickly turned before I broke down. I waved and blew kisses to my wonderful teacher friend out the window as I drove away fighting back tears. Two days later, dropping Christi off, I spoke with three of my students out in the hallway and I knew I made the right decision to get back to work as soon as possible. So now, after missing 18 days of school this year, I am back! Ahhhhhhh!! And my students are just as fabulous as I remembered!!! As usual, it took me days to get my classroom ready, but I left school at 6:30 PM on Friday - all set for Monday morning.

Last Monday was also Shayla's first day back to preschool. As I drove Shayla to preschool I heard her say, "Ya know what's annoying about preschool?" (Oh, Shayla I can only imagine what you might say next.) "What, honey?" I asked. "You have to sit criss-cross applesauce and one time my legs hurt. What I like about this Ohio preschool is you can sit with your legs straight and they don't get all tingly and this Ohio preschool looks little on the outside, but it's huge once you go in." Thank you for sharing, Shayla. You continue to bring us laughter every day with your wise words of wisdom and many, shared insights. You LOVE listening to the Junie B. Jones books so much that Daddy and I have decided that YOU ARE Junie B. Jones. Really, you are just like her! We love you very much, Shayla!!! I received a sweet email back from one of her wonderful teachers who wrote, "Shayla is a wonderful child, she is always the first to comfort someone or make them feel welcome." That was very nice to hear since I always really wonder what she's like at school even though I've never received a bad report - this sweetheart just makes me nervous! She's never once wanted to take anything for "show and tell" because she's afraid that some other child will touch her item and put germs on it. Come Monday morning, I asked her if she wanted to take something for sharing knowing fully the answer would be, "No, someone may put germs on it!" but she shocked me by saying, "Yes. I'll take my cat." "Shayla you can't take a cat. I have to approve that with your teacher first how about your stuffed cat?" Shayla said "No, someone may touch it." Thanks to her teachers, I took "Kitty Thomas" to preschool on Wednesday morning and took lots of pictures of what I am sure will be a first and last sharing experience. I came home raving about her wonderful teachers. God bless preschool teachers, everywhere - especially Shayla's!

Wednesday, Christi came home from school with much excitement telling us she kicked her first home run in kick ball and the ball just missed her by "this much". Shayne and I smiled, gritted our teeth and said wonderful!! (Thinking, oh - low platelets! Internal bleeding! Yikes!!! I never thought to tell the gym teacher to keep her away from balls. Whew! Thank you to Christi's guardian angels always working overtime to protect her!!!!!)

Thursday's blood counts: Hbg. 9.6 (low, but not needing transfusions. "8" is the number.) white 6.3 (Go Neupogeon shots! YES!!) Platelets 20 (ouch, but no transfusion needed. "10" is that number) with an ANC of 4,700. Engraft baby stem cells engraft! Let's get some blood counts so her cancer treatment can soon continue!!

After consulting with the THREE wonderful children's cancer centers (Philly, NYC and Los Angles) there are THREE different recommendations. (Imagine that!) So we feel very blessed that we still have options and while they're not good options, we do have things to keep trying. Sadly, many of our neuroblastoma fighting friends are not doing very well and that is heartbreaking. We are far from being out of the woods - still deep in the forest and quite possibly stuck or heading backwards soon, but we're still looking and committed to trying to find a way out - even if there are very few bread crumbs providing clues.

We fully understand that she still has disease and therefore is a "ticking time bomb" but it's just making us treasure every single day with her even more! We delight in the little things - like her going to a little friend's after school, baking her first cherry pie, playing with her sister and watching her sell Girl Scout Cookies last week. (All things we thought a year ago we'd never get to watch her do. Thank you, Lord!)

Shayne started back to work part time (yipee!! And I forgot how smashing he looks in a suit and tie! Wow!! The man is gorgeous!) and the girls and I are all back in school now (yipee!!). School: a normal, structured, routine, dependable, wonderful place - everything our current life is not and everything I long for! It seems like even if the world is falling apart around you, there's one thing you can count on to keep going - school! What a blessing! We don't really know how long this "normal" life will continue, but for at least a month or two we're assuming - pending her disease doesn't take off. We're still debating and consulting regarding her next treatment attempt.

Today's blood counts were checked prior to school so that there would be time to get a blood transfusion if necessary. (It's is so smooth to just go to our local hospital here at home.) Hgb. 9.0 (transfuse at "8") platelets 15 (transfuse at "10") white count 11.4 (After 12 days of "g" shots this time. We shall now stop them since her ANC is 11,000 and expect that ANC to drop in half once the "g" shots are discontinued.) She's looking terribly white, she's cold and has the bluish/ purple look under her eyes so we know she's not feeling the greatest. We shall assume that she will need blood products on Friday because of her very low counts today. Shayne will take her before school and bring her tardy. I'll be anxious to get that little wave outside my classroom door knowing they've safely arrived at school.

So the "only" problem which remains is that Christi has a little bit of cancer that just won't go away. Of course it's CANCER that hasn't responded to any type of treatment and that makes it a REALLY BIG problem. Like Dr. Maris told us last Friday, "Having a little bit of cancer is like being a little bit pregnant." We pray that her disease remain steady while we're in between treatments and that the reinfusion of her stem cells (Jan 2, 2004) did not put the cancer right back into her and encourage the disease to take off and that we quickly get started on a new course of treatment.

In reflecting back on my records of Christi's medical care, I see that January 2, 2004 started exactly the same way as January, 2, 2003- getting a blood transfusion at a hospital far away from home. I'm hopeful that January 2, 2005 starts off with Shayne and I donating blood to the Red Cross and Christi and Shayla donating toys to a good organization to help others. We have been so blessed by the love and generosity of friends, organizations and strangers alike over the past sixteen months. People are great! We've learned so much throughout this hell we've lived and for those great lessons we are extremely thankful!

Warmly, (Ah, those options in Los Angeles are looking pretty tempting right now as it's still below freezing here in Ohio! hee hee!)


Christi's Joke: She drew a tree with hands on it and then showed it to us saying, "See the palm tree?" Palm Tree! Good one, Christi!

Christi's Writing completed at school a few months ago:

There are many different things about me because I try lots of new stuff. My cat Buttercup just had one kitty. We named her Sarah. She is a nice kitten. I like to pet her. See there are many different things about me.

If you're interested, Eric recently scanned some art work that Christi created during her recent treatments in Philadelphia (Art 3 page). He also scanned the article from the wonderful Northwest Ohio's Make a Wish newsletter.

What's Next? We're trying to be "normal". School, work, activities and sleeping in our own beds every night! AHHHHHHHHHHH! We are so fortunate to be back home!!

Prayer Request: We pray that her disease remain stable while we're in between treatments and that the reinfusion of her stem cells (Jan 2, 2004) did not put the cancer right back into her and encourage the disease to take off and progress. We ask for guidance from above in making the right treatment decision to get Christi into remission forever and we pray that this next attempt at treatment begins very soon. We pray for all of our cancer fighting friends we've made all over the world. And we're most thankful and give praise as Christi currently remains pain free. (Now come on blood counts, rise! Smile.)