Journal Entry

Saturday, March 22, 2003

For this child I prayed;
and the Lord hath given me my petition which I asked of him:
herefore also I have lent her to the Lord;
As long as she liveth she shall be lent to the Lord.
1 Samuel 1:27,28

Greetings from the country's largest city, being heavily protected by the NYPD and many other great forces!! This week was definitely a busy one for the Thomas Team. Tuesday morning at 7:30 AM Christi and I left for Sloan to start harvesting her precious stem cells. These may be needed for a rescue after possible MiBG therapy which she may have done at CHOP (Children's Hospital of Philadelphia) if her bone marrow still hasn't cleared. However, I'm praying and hoping that instead the stem cells collected will be used for her bone marrow transplant. IF her bone marrow clears of this nasty disease, I believe we'll be headed for transplant. It has been a very long, draining and stressful week. The tension is thick all over the city with the war and of course the tension remains thick within the Thomas Team as Christi continues to fight her own war!

On Wednesday, Christi and I again left at 7:30 for the hospital. At 9:00 Shayne arrived with Shayla. Then Shayla and I were off to go to Chi Chi's school. What a thrill for both of us!! What I saw this week was very different from last week when I "thought" security was very high. Coming up the subway steps, we were greeted by three NYPD police cruisers, a huge - camper style NYPD unit, many officers walking around with large guns and police dogs. This city with 3% of the population and 5 million subway riders each day is nervous about another terrorist attack. Hearing first hand about 9/11/01 from Chi Chi's family who still lives just 300 yards from Ground Zero and who was home at the time and had to flee, it's easy to understand why. My heart goes out to all involved in the war that broke out Wednesday evening. What a sad and scary situation. We pray for a quick and peaceful resolve and for strength and comfort for all of our great military families. Thank you for the tremendous sacrifices that are being made to protect us all.

Shayla and I proceeded to the New York Public School. I couldn't wait to get inside Chi Chi's classroom and be surrounded by the 4 and 5 year olds. The school was gorgeous, the classroom cheerful, the students the most beautiful rainbow of a fabulous mix of culturally diverse learners I've ever seen. It was awesome! I felt right at home being surrounded by awesome, excited, active, loving young learners. WOW!! Chi Chi met Shayla with a big hug and they sat together at the table and on the carpet. The students' saw Ohio on the map and their eyes became very wide when I told them that outside of my classroom windows, my students can see sheep, most of my students have never ridden in a taxi, and that sometimes tractors will drive down the road in front of our school. (I need to write a grant to get these fabulous "city kids" to the wide-open country!! I see a City Mouse / Country Mouse theme here!) We spent the rest of the day with Chi Chi and her beautiful Mother. It was the perfect day for Shayla and I!!!!! I felt great; practically floating the entire way back as Shayla chatted on and on about Chi Chi.

That feeling soon was crushed as Shayne and Christi then arrived "home". I stepped out to get a quick update from Shayne. He reported that her audiogram indicated that so far she's had moderate hearing loss in the high frequency range. This hearing loss is permanent. I tell myself that I want to save HER and not her hearing, but it's still hard to accept. It's such a shame that these kids have to go through so much with so many permanent side effects. I hate this ugly disease!

Thursday was intense. I woke her up at 6:45 to drink the contrast needed to be inside her an hour before her CT scan. She did a fabulous job and I was so proud of her. At 7:15, I was loading her into her stroller when she announced, "I'm going to get sick!" and she did. After that lovely little incident that I've grown so accustom to, we took off for the hospital where they gave her MORE yicky stuff to drink to compensate for what was "lost". Thank God, she was able to keep it down. With Sloan's new CT scan machine, she only had to be up on the table inside the machine for about four minutes after waiting for her turn. Yipeeeeee!!! More and more tests were conducted on Thursday. She did much better with her bone marrow test this time. They gave her a different sedative which helped her to wake up with a more pleasant disposition. (Thank you, Lord!!) She's still in a bit of pain from it, but it's getting better each day now. On Thursday afternoon, Shayne and Shayla came over for a bit. Shayla enjoyed the playroom and Shayne met with a neroblastoma doctor to ask some questions. (Imagine that! hee hee!) He's so awesome! Go, Shayne!!

Friday was a repeat of Thursday - plenty of boring tests and a lot of waiting around. I stayed back with Shayla while Shayne went with Christi. He reported that it was hard for her to remain still up on the table for the entire MiBG scan. I know I couldn't do it! Her harvest went well although boredom was a huge issue. He called from the hospital phone to say that he was taking Christi to the pet store. Shayla and I put our shoes on and headed out to the hospital to meet them. The pet store again provided a tremendous treat to Christi after such a long week. They have a store cat that she just adores and they're so nice in the store. Next we went to Central Park enjoying the spring-like weather and the girls played on a statue of Balto and on the Alice in Wonderland Statue. Definitely a tremendous end to a long week.

Christi needed 7 million stem cells collected. On Tuesday she netted 1.9 million, Wednesday 1.5 million, Thursday 1.2 million and we didn't get a call last night about Friday's harvest, but we're confident she has enough now in storage for later use. When she harvested in November in Columbus, the cells were purged to make sure that they were cancer free. This was done at CHLA (Children's Hospital of Los Angeles). Unfortunately 90% of her cells were lost during the purging process, so we will not purge this time. However, they will be tested for cancer and to make sure that they're clean. One good thing is that she may have clear stem cells even though her bone marrow is not.

The highlight of Christi's week was making a new friend. She met a darling seven year old, Emma, also fighting neuroblastoma Shayne and I really enjoyed getting together with her bright and beautiful Mother every night while the girls colored, played hide and seek, chess, etc. She'll be here next week too - although Christi will be recovering from surgery.

As I finish entering this, my Mom and my Aunt should be in the air flying to New York. I'm so excited. I think they'll be very, very surprised to see the heavy security in place here in the Big Apple. This morning, the four of us are heading out to see the Barnum and Bailey Circus at Madison Square Gardens thanks to Dave K. When we return, the Thomas Team reinforcements should be here and checked into their hotel. I'm excited! Have a GREAT weekend!!


PS: I'll email Eric to report with an update for him to post as soon as I possibly can after her surgery on Tuesday.

Christi's Joke: What do you call a car that ran into a pet? (A carpet!)

Another Joke: When is it a bad time to be walking in front of a cat? (When you're a mouse!)

What's Next?
Meet with surgical team at 10:00 AM on Monday

Tuesday - surgery (I don't know the time yet.)

Recovery the rest of the week

The results of the tests that were conducted this week will determine the next course of action. It's all up in the air pending the results of her bone marrow and MiBG scan. We pray that they are all clean scans - free of the nasty neuroblastoma cells and we hope that we find out the results very soon as we're extremely anxious.