Journal Entry

Wednesday, April 30, 2003

"Take Chances. Make Mistakes. Get Messy!" Ms. Frizzle
(from Scholastic's Magic School Bus books)

Shayne and Shayla returned to Ronald from "Start with Art" at the Met and from playing in the Ancient Ruins playground in Central Park late Friday afternoon. (The art museum has really become a staple in Shayla's life. And Shayla being the "Ambassador for Christi's Crisis" that she is, the art museum is aware of Christi's cancer; therefore, they will be coming to do a volunteer activity with all of the children of Ronald tomorrow tonight! Yipeee! Thanks to our friend from the Met - Carolyn!!)

When Shayne arrived, the great folks at Ronald gave him two tickets to see the new Broadway Show - Frog and Toad. This is a musical is based on the great books by Arnold Lobel that Shayne enjoyed as a child and enjoys them even more now as he reads them to the girls. We were interested in seeing it, but when I checked out the ticket prices we changed our minds. Well, Ronald must realize we were born with plastic spoons in our mouths (instead of silver, hee hee!) as they gave Shayne two free tickets and $20.00 for the taxi. I'm so happy that Christi and Shayne were able to go out and have an enjoyable evening spent together at the theater. After the show, they enjoyed walking around Times Square all lit up at night and stopped to listen to the many street musicians. This city really is a happening place!!

Shayla and I stayed back at Ronald. She had a blast playing with one of the super Friday night volunteers while I caught up with Jonathan's Mom. Jonathan has been fighting nb for five, yes 5, years!! He's from Canada and had to exhaust all options in his country, before being permitted to come to the good old USA for treatment. Jon, like Christi, is enrolled in this new Phase One 3F8/Beta Glucan treatment study for kids with refractory and progressive disease. Unfortunately, at our meeting on Friday, the oncologist told Shayne and I that the first two children in the trial have had their cancer progress. Knowing both of those sweet kids, we were crushed. However, I was thrilled to learn from Jon's Mom Friday night that he has shown improvement (his bone marrow and biopsies came back "No NB present") and is what may be the first success story of this new trial!! Go, Jon! Keep kicking!!! Die, cancer, die!!! If you'd like to read about Jonathan's Journey and to sign his guest book, he is in Christi's Clubhouse at He is a delightful young many and I've grown quite fond of his Mother.

Speaking of exciting news and taking things to a new level, Christi's grown in height! Yes!! Despite all that nasty chemo and being told her growth would be stunted, she's already grown two centimeters since our arrival in December. She now stands at 120.2 cm. You go, girl!! While a shortened stature was the least of our concerns when the long term side effects of treatment were shared with us in Columbus, it's nice to know that she's still getting taller despite it all. (And since she's always been at the 100th percentile in height with every well check up, we thought if she survived - she would just be normal instead of tall anyway.) Her weight remains constant at 22 kilograms (about 48 1/2 pounds). I won't give you the report on mine. - oh my! (frown)

When Christi woke up on Saturday morning, she asked if it was a hospital day or a free day. I told her it was a free day, but that Daddy and I already planned it. Continuing on quickly, before she could object and make her own suggestion, I reminded her that she's been asking since her arrival in New York if there is a COSI here. I explained that we found a science center and that was where we would spend the day. Shayne took the city bus over to the other side of the city to get our van out of the parking garage (Rick G. you are a Saint!! An angel on earth!!! Words cannot express our thanks and appreciation for taking care of our van!!!!! Thank you soooooooooooo much!!!!) We were soon on our way to New Jersey's Liberty Science Center.

Yippee! What F-U-N!!!!!! The quote from this journal entry is one that Christi and Shayne used to say to each other last year when she was on her "Magic School Bus" books and science projects kick. Many science experiments were conducted last year in our kitchen. The inspiration was always to test out concepts for possible inclusion into my kindergarten science curriculum; however, Shayne and Christi had more fun experimenting with different concoctions than deciding which ones I should conduct with my students in the classroom. The messier the better!! With Shayne and Christi down on the kitchen floor, I knew she had the best Daddy in the world and when the playdough volcano exploded shooting "lava" (vinegar and baking soda) all the way up to the kitchen ceiling one night and Shayne said, "Look like I'm on clean up!" I knew I had the best husband in the world too. Christi was able to meet "The Friz" at the Science Center and for four hours enjoyed exploring this gorgeous center which opened in 1993. Shayla held a huge cockroach (really impressing the ten year old boys who said, "eewwwh! yuck!") and Christi enjoyed the space show experience and learning about exponents. They also planted bulbs which they are watering and watching in our Ronald room. Not exactly our big garden at home, will do! I'm glad to have a windowsill!! It could be worse.

Recently, at the art museum, Shayla was playing with her hair barrettes and turning them into crosses during the story session. A gentleman noticed this and asked Shayne if we were Christians. As it turned out, the gentleman is a minister and he told Shayne about the Cathedral of St. John the Divine saying that it was larger than St. Pat's. Since Shayne still had the van out of the garage, we drove all the way up to it on Sunday for church. (We also went through Harlem; the parts that I saw were not as bad as I had expected at all. I hope you're not reading this, Mom!) St. John's is two football fields long and seventeen stories high. It's made completely of stone. Christi enjoyed lighting a candle for her cancer friends at one of the side chapels. It was a perfect morning.

The church is near Columbia University. It was interesting to drive around a part of the city we hadn't been to before. Next we went down to another area of the city we hadn't yet explored. Union Square where the girls played on a playground and Washington Square at New York University. This is the park where chess is played. Christi challenged an older man to chess, but lost both games. She had a lot of fun playing a stranger on a gorgeous day in NYC and many gathered around to watch her as she was the youngest player by 15+ years. Since Christi recently received a Toys R Us gift card, our next stop was the world's largest toy store where the girls had a joyous time checking out all of the items and then each deciding on one to buy. Finally, it was time to go to the awesome Radio City Music Hall where "Dora the Explorer" was performing to a sold out crowd. We would like to thank Dave K. (hometown of Tiffin!!!!) for allowing us the opportunity to go to the show. We all four were singing along. It was GREAT! Waiting in our seats were gift bags (again!!) filled with popcorn, sodas and Dora key chains!! Thank you, Dave and Radio City!!!!!! It was the perfect thing to take our minds off of the fact that in a few hours we'd again be subjecting Christi to her painful treatment for the next two weeks.

Back at Ronald, Christi wanted to bake cookies to give to the "sick kids" at the home. She made delicious peanut butter cookies with some help from Mommy and then got a huge smile on her face any time a child or parent took one off the plate that she offered them. (And I'm thankful it was like "looting in Iraq" so that I wasn't tempted to finish them off myself!! smile)

Monday was right back to the yucky treatment sessions again at the hospital. Also on Monday, we were in the fabulous Dr. Kushner's office joking around. We were talking about what a terrific weekend we shared together when suddenly he changed the subject saying that Christi's bone marrow results were back and they were all four still positive. We did not anticipate having results until Wednesday or so, so what a shock. Shayne quickly joked, "Talk about taking the wind out of someone's sails!" Boy did that bit of info completely change the atmosphere in the doctor's office. Unbelievable! We were crushed. I just knew that this experimental trial would do the trick - if not clear her bone marrow on the first round, at least show some signs of reduction. The big guru here, Dr. Chung, told us if we were going to see a change with this new trial, we would see it right away after the first cycle or two. Hmmmmmmmmmmmmmm. I appreciated his honesty, but I wanted to scream, "Go back and work with your mice and figure it out!! This is my baby!" But of course, I didn't and I know to this brilliant doctor and scientist this new study is "his baby" too! There are so many kids on the waiting list we remain thankful that we were able to get on right away.

While this news is very hard to accept, I continue to put my trust in the Lord. He, of course, knows far more than I. I'm not sure what I'm to learn as a result of this, but I've learned a lot. And MANY people have told me that Christi has taught them a lot about what's important in life as a result of her struggle. Things are not looking good.

Then on Tuesday, we received written reports of the MiBG scan and the CT scan. Both of them give us a small glimmer of hope again. The MiBG test indicated that she has had "interval decrease intensity of some lesions since her prior scan of 3/03". And the CT clearly states, "stable mass, no evidence of progressive disease." I think we'll need to accept both of these test results as a very small step in the right direction and hope that things really take off and shrink with this second round of treatment she's currently undergoing. My heart breaks to see her in such tremendous pain and suffering. I only hope this will all be worth it. She's worthy of a miracle in my book.

Tuesday found Christi and Shayla attending Becca's 8th birthday party at the Little Shop of Plaster and Pottery just down from Ronald. (The shop renamed "Plaster Disaster!!" by Shayne hee hee). We met beautiful Becca in December. She was always in tremendous pain and suffering from progressive disease. Like Christi, she also has refractory disease. Becca recently completed her MiBG treatment at CHOP. We've never seen her look better. You really can't believe it's the same kid! Her father is a doctor of radiology and he was very surprised himself to learn how high of a dosage of internal radiation they give these kids in Philly with this experimental treatment. We wish happy 8th birthday greetings to Becca and pray that she celebrates many, many more back in Louisiana!! How great it would be for all of these kids to come back to MSKCC each fall to celebrate being NB Survivors!!

Some of you have asked Eric and I to set up a guest book on Christi's web site. Due to keeping costs to a minimum, and having my email address located in many places on the web site, that has not been done. I was surprised to see what some of you have done on your own though. You certainly caught me off guard!! A group of Shayne's Mother's friends are doing a fund raiser on May 10th - which just happens to be two days before Christi's 6th birthday. They've established a web site and on it they have a guest book where I've been reading some well wishes. Thank you!! For those of you that do desire to "sign a guest book" the address is:

Thank you for allowing me to share our family's struggle with you and for all you've done to help us along. Currently, there is no end in sight, but I believe as long as she's still fighting - the war's not over! Go, Christi and may God bless your sweet supports!! We've been very blessed. Thank you!!!

Lots of love,

PS: Recently, our dear Webby received so me new art work of Christi's. All of the art work was created originally by Christi. It should be up on the site in the near future. (This poor guy is trying to build a house in addition to his real full time job, his wife and Christi's web page! Go, Eric!!) Christi's drawing abilities continue to amaze me and I'm so glad she's finally feeling better and creating lots of art once again after being at a standstill for months. If you have time, check it out at: http://www.chris (Note from "webby" - this is still in process and should be done soon. Christi is almost too talented for me to keep up and I have not had time yet to scan in her wonderful artwork. Coming soon...)

PSS: And speaking of that awesome Web man, it was a surprise to me to see a "From the Webmaster" section on Christi's site. How nice!!

Christi's Jokes: What is Buttercup's favorite Pokemon? (Meowths)

What Pokemon is like a Pokemon at Aunt Marty and Uncle Jeff's (Ponyta)

How does a hen tell time? (one o'cluck, two o'cluck............)

Christi's Quote: "Something bad can turn into something good." (She made this comment after we got lost driving back from the science center. Christi was happy to learn about boroughs as we drove through Brooklyn and Queens trying to get back into Manhattan. The next day she asked if Tiffin was a political subdivision of Ohio and therefore a borough. We were floored with how well she was listening to Daddy explain it the day before. Amazing!)

What's Next? When this two week treatment ordeal is over, we plan to take Christi and Shayla to Disney World. Given the fact that all four bone marrow aspirations are still positive, we told the doctor that we want to take Christi to "see the Mouse" explaining further that it would be her 6th Birthday on May 12th. (What better place to celebrate your sixth birthday, than Disney World??!!!!!) He agreed with our "making memories" theory adding that it is probably best thing for this little girl since things are not looking so good. While she's feeling well and the disease is not yet taking off - go for it! So we will!!

Happy Birthday to our dear friend, Becky. And, Christi wanted to give her teacher yellow flowers for her birthday - so yellow flowers are now on their way to the wonderful Mrs. Rombach back home. Happy Birthday, ladies!!! We love you!!