Journal Entry

Monday night, December 8, 2003

"The sun will come out tomorrow.
Bet your bottom dollar that tomorrow, there'll be sun.
Just thinking about tomorrow
clears away the cobwebs and the sorrow till there's none....."
from Annie's Tomorrow

Being the grateful recipients of four complimentary tickets to Annie at the Walnut Theatre here in Philadelphia we were all humming "You're Never Fully Dressed without a Smile" and "Easy Street" and thinking "THANK YOU"! Thank you to one of my teacher friends and to one of Shayne's business friends - the Obringers, as they treated us to a most wonderful afternoon we never would have done on our own! We all four thoroughly enjoyed the musical production of Annie! They know our family's love of the theater and they like to do nice things for others especially at this time of year so they emailed to see if we would be interested. So sweet. We've been so blessed by God's great people here on earth! (And Joe & Nancy would have been laughing hysterically at me that night. When the girls protesting going to bed, I immediately hopped down on the hard kitchen floor, pretending to scrub as I sang, "It's a Hard Knock Life, for Us!" The girls roared with laugher and when their sweet friend finally quit laughing she said, "You have the greatest parents!" (Of course, my girls thought otherwise and I heard Christi mumble something about "embarrassing"!)

The teacher in me couldn't stand it any longer. The faded, falling apart bulletin board in the kitchen here at Ronald just had to go! Every time I looked at it, I cringed. I knew how I wanted to arrange it, yet I needed help. Once again my sweet teacher friends came to the rescue! After a few emails, Caroline had a box in the mail and once it was delivered to me here at Ronald I immediately crawled up on top of the counter (armed with a stapler, scissors and tacks) and got to work. (Smile.) I'm happy to report that there are now TWO gorgeous, fresh, bright and organized bulletin boards in the kitchen sporting the pictures of beautiful children who have called this place their home while undergoing life-threatening situations with the title, "PRMH: Home of the Bravest and Most Courageous Fighters in Philadelphia!". My friend was concerned - knowing me, that I'd take over once I got started, but I'm content now and I really just want to get back home to my own classroom and start working there with my precious little students I miss so dearly! (Tonight my students and Christi's classmates are singing away at the annual Christmas program. It's with great sadness that I wish Christi would be there with them, yet I'm hoping all is going well for the little ones back at our school.)

Knowing that Christi would again need blood and platelet transfusions on Friday the 6th, Shayne was able to donate blood for her last week. Surprisingly, she did not need any transfusions as her counts were low, but thankfully above transfusion levels. YIPEEEE!! (Friday's report: Hgb-9.8, white-1.7, platelets-42. Her ANC fell drastically to 1,105 (yikes - she's falling fast! Under 500 is not good.) Weight: 23.7 kg. (roughly 51 pounds) and height 123.8 cm. (about 48+ inches). Shayne started the doctor's visit off with, "I'm surprised you're still talking to us." Wonderful Dr. Suzi just laughed and said she was happy Christi's counts were being held steady from last Monday's transfusions and that Monday she'd need blood products again. After telephoning Dr. Maris she reported that whenever we think we are ready to give her the stem cells back to just let them know. She said it would be nothing short of a miracle for her not to need them given the incredibly high dose of intense radiation she was injected with. (Well, miracles happen and we're praying hard for her counts to recover on her own - making medical history! Smile. The power of God's healing is superior to all!)

Friday the snow started falling and just didn't seem to stop. We witnesses firsthand what a "Nor-easter" is! Early in the morning when the girls lifted up the window shade in our room I knew it was snowing before I even opened my eyes. Laughing I said, "This is the only day I do not like teaching kindergarten - the day of the first snowfall!!!" Somehow; despite my best of efforts, the snow falling outside my classroom windows is always more exciting than my planned lessons for the day and I reluctantly tell myself it's a "teachable moment" making alterations in my plans and pulling out my "snow" books and activities to satisfy my students' desires on the first snow fall of the year. Christi and Shayla were no different - begging to go out and play (not caring about our doctors' appointments and Christi's low blood levels). Saturday we woke up to even more snow and once we saw a television we learned that most everything was canceled.

On Sunday we drove about an hour north to visit with Dave and Sharon and their boys. I had never met this wonderful family before, but within minutes felt like I had been there a million times. Some people have the unique ability to make others feel so comfortable and welcome and the Kerschners definitely have that ability! This is the sweet family who so lovingly took Shayne and Shayla into their home when the girls had to be separated due to the chicken pox exposure in NYC last winter and Dave has repeatedly treated us to show after show in NYC due to his job at Radio City Music Hall. They had invited us to Thanksgiving dinner again and again, but we knew we couldn't impose on THANKSGIVING, but we did want to get away from the Ronald house and escape the city for a while so Sunday was an incredible day. Sharon cooked a fabulous meal, their boys are wonderful young gentlemen and when the girls wanted to play in the snow, but had no boots Dave was down on the floor duct taping plastic bags over the girls socks while Sharon rustled up hats, scarves, mittens and carrots, cookies, etc. with which to adorn a snowman! So so sweet! Sharon drove me to Target to pick up some things that I needed (hand soap, face soap, slippers, warm undergarments for cold little Christi with low blood counts, etc.) It was the perfect day! The girls were asleep before we were out on the highway and slept the entire way back to Philly. I plugged in the cutest, little Christmas tree the Kerschners sent back with us and it really makes our room homey and feel like Christmas now. The girls LOVE it as they did the books that Sharon and Dave gave them. So sweet!

Monday, was the big day - blood counts to be checked. Knowing this would be a HUGE indicator of what Christi's body was able to do on it's own, as far as blood counts recovering without the stem cell rescue, we were most anxious and we assumed she would need both blood and platelet transfusions. I again packed a large bag with items to keep us occupied for what would probably be about 6-8 hours at the hospital. It turned out to be a nine hour ordeal, but that's just part of playing this game. She required both blood and platelet transfusions. It was awesome to see in Shayne (poor - hee hee) handwriting the direct donor slip indicating that she indeed was receiving her Daddy's blood. (Hbg-8.1 (normal 11.5-15.5), white 1.3 (normal 5.0 - 14.5) , platelets 16 (normal 150-400) with an ANC down to 728 - ouch! (normal approximately 1,500 - 5,500). Weight: 24.2 kilos - Sharon's great food on Sunday must have helped!! (about 53 pounds). At one point during her blood transfusions, a nurse came to check on her. Christi said, "Which hand do you write with?" The nurse innocently responded with, "My right." Christi laughed and said, "I write with a pencil." Well, this awesome nurse didn't miss a beat. She asked the little jokester, "What do you put in a toaster?" Cautiously Christi didn't answer instead asking, "I don't know." (Bread! - most people say "toast") Good one, nurse Carolyn!

A couple of weeks ago we requested that the hospital run a EBV test while they were doing her routine blood work. We wanted to have this information in case we ever pursue the vaccine clinical trials for neuroblastoma in Texas. While still unknown if she will qualify or if we'd even pursue it if she did test positive, we were thrilled to have her EBV come back as positive - which indicated that sometime in her young life she was exposed, therefore making her a potential candidate for the experimental trials at Texas Children's. (50% of children her age have been exposed.) We've again contacted the individual in Texas so that she knows we're serious about their new trial when it opens (scheduled for winter).

Recently I learned that some sweet teachers meeting in Columbus shared some very special loving kindness with our family on Saturday (Thank you, friends!) and a sweet singer played the guitar for Christi to help pass the time today at the hospital and members of the hockey team came to spread some cheer as well. God's people are wonderful!!! With deepest thanks and appreciation for all of your support throughout this crisis, we say THANK YOU!!

Love, Angela - Thomas Team Mom

Christi's Joke: Why does Rudolph use an umbrella? (Because he is a reindeer.)

What's Next? EXCELLENT QUESTION!!!!!! There appears to be a bit of an "issue" of whether we are officially on or off of the Phase I clinical trial. We were told we had violated the study and we were "off" so we recently contacted MSKCC asking to head back to NYC hopefully on Monday - including the CHOP docs in the email. Now CHOP believes that we are officially ON this study we were kicked off of due to the refusal of the stem cells infusion. NYC could start immediate treatment for Christi which is what Shayne and I would possibly like to move ahead with (2 rounds high dose chemo followed by antibodies and Accutane); however, if CHOP won't release her we're sort of stuck in limbo land - exactly where we did not want to be, ever with this disease at bay and no treatment being endured. PRAYER REQUESTS: That Christi's blood counts miraculously recover (and fast!) on their own without the need of her stem cells and that CHOP realizes that they removed us from the study and they need to let us go elsewhere to seek consultation and possible treatment from other doctors to make the best of decisions for Christi. Lord, hear our prayers.

What's Next for Fun? Recently, because of Christi's outgoing nature and bubbly personality, I was asked if she likes to sing and would she sing in front of people. Of course I responded, "Yes!" Then the sweet social worker asked if she would sing the national anthem at the Royals Hockey Game that about 50 of the cancer kids from the hospital get to go to about an hour away on Sunday night. Oh, my thinking suddenly changed!! I gulped knowing that her awesome music teacher would be very disappointed with me and said, "How about if I print off lots of copies of the words, and we get a whole big group of cancer kids out there on the ice to sing before the hockey game?" The social worker agreed to that and once again to those great teacher colleagues of mine - a practice tape and music is in the mail!! On that same day, Christi will be going on a "Fantasy Flight" sponsored by US Airways. The cancer children will board a plane, taxi to the other side of the airport where they will park at "Rudolph's Gate" and get to meet Santa in a Winter Wonderland atmosphere where there will be crafts and face painting. What fun!! I think it'll be a hoot! A plane that doesn't take off!!!! (Of course filled with kids whose platelets would never support air travel anyway!) So sweet! And thanks to Congressman Paul Gillmor's office (from home!!) we will be on a tour of the mint here in Philly on Wednesday morning - yipeee!! Now rise, ANC, rise!!!!!