Journal Entry

Friday, January 31, 2003

Today I'll hold my child's hand
And take time to explore,
The secrets of a child's world
This moment has in store.

For that same hand will wave good-bye
When my child's days have passed....
Today I'll hold my child's hand
For children grow so fast.

Greetings from the largest (definitely not the warmest) city in the United States................New York! I hope this entry finds you and yours well!! The Thomas team remains committed and continues on the playing field. We're doing fine! The above poem I found in a magazine while on maternity leave after Christi's birth. I copied it, put her hand prints on each side of it and enclosed it in her scrapbook. Since then, I've often used this poem for my kindergarten students' gifts to their parents. Children do grow up fast! This was evident with Christi reaching the milestone last week of losing her first tooth. What excitement!! And it confirmed what a "normal" little five year old girl she really is. Christi researched her options and decide on attempting the Mexican children's tradition. In Mexico, the children put their tooth in a box beside their bed. They believe that El Raton comes during the night and takes their teeth and leaves them money inside the boxes. Christi read that El Raton leaves more money for a front tooth so this finalized her decision. Well, it worked! I was planning on leaving a quarter, but after hearing her explain to Shayne that El Raton leaves more for a front tooth and that's what she had, I got up early and put three quarters, three dimes, three nickels and three pennies in a box knowing how much she enjoys counting change. She woke up very happy and excited to count $1.23 in change. Christi learned from her library book that there are many other tooth traditions that children believe around the world so she's currently deciding which one to try next. If she pushes hard enough on another tooth, she claims that she can get it to wiggle a little bit, so perhaps it won't be long before she attempts to throw her tooth on the roof, to bury it or to plant it under a tree. (Those traditions will be difficult if we're still in NYC.)

The Norwalk Virus struck the Ronald McDonald house as well as the hospital, but so far the Thomas Team remains unscathed!(so far) Our hearts go out to those who caught it. Those who had it told us was the good news is that it doesn't last long. It comes on hard and leaves in about 24 hours. That's all these poor kids need here - they've got enough to deal with.

On Saturday, we were blessed with a wonderful and fabulous day of sightseeing! Shayne drew her blood at 7:00 AM and ran it down to the hospital while I got Christi's breakfast. (I think he could give any nurse a run for her money. He's GREAT!) Then we headed out after breakfast. We had a wild cab driver first thing in the morning. Christi said up to the driver, "Is this a taxi cab or a race car?!!!!" I thought the same thing, but I never would have said it as he quickly cut across two lanes at a fast pace. She loved it! I took a deep breath as the driver shouted back, "I've got a wise guy in my cab!" First, we went to the beautiful Radio City Music Hall. Christi fell asleep while we were waiting in line, but woke up so happy to get out of her stroller and meet Barney when it was her turn. Meeting Barney was the coming of full circle for Christi since she fell in love with him about four years ago. Barney has been a staple in our home ever since. Research tells us you can't learn to read until you can keep a steady beat. Barney was definitely instrumental in Christi's learning to keep a steady beat. It was wonderful that she was able to meet him even if it only last two minutes!

Next, we walked many blocks to the Empire State Building. Again she slept the entire way. This stroller has been a Godsend! What a beautiful view of the city we enjoyed from the 86th floor and it's indoor observation area. Next we walked, while Christi took her third nap of the day, to the Times Square area. We went to Planet Hollywood thinking she'd enjoy all of the interesting things to look at and to occupy her. She certainly did! Next door was the wonderful Toys R Us. The store is amazing and the prices are the same as you'd find back home. With her tooth money in her pocket, she picked out a Barbie Styling Salon. (Hmmmmmmmmmmmmmmmmm. This was more than El Raton left. I think Daddy must have kicked in to help with the purchase.) From the toy store we walked, while Christi again napped, back to Radio City. We thoroughly enjoyed Barney's Colorful World show from our great 6th row seats. (Thank you, Dave K.!!!) What fun!! I looked at her sitting on Shayne's lap many times throughout the show and thought, "You'd never know how sick she is, what she's been through and what she must yet endure."

After the awesome show, Shayne asked Christi if she wanted to take a taxi or a subway back to the hospital and she selected a subway ride. On the way to the subway, we walked past Rockefeller Center. We knew she'd enjoy seeing all of the beautiful flags. She did. We also pushed her past St. Patrick's Cathedral where Aunt Tina and Uncle Gil got engaged. What a lovely church. Finally, we arrived at the busy subway station. I thought we had to be crazy and that we were sure to lose her, but it was amazing how considerate people were to moving over to let a child in a stroller in and out of the train. Thank you, New Yorkers!! We arrived back at the urgent care center on a Saturday night to get Christi's platelet transfusion. Her platelets were down to eight (yes, 8 - very, very low) But again she slept through the majority of that process too.

Her bone marrow test was conducted under sedation on Monday. She was in some pain, but it wasn't unbearable. We learned that the bone marrow biopsies were about the same as before, but the aspirates were somewhat better. Three of the four aspirates had no or few suspicous clumps of cells while one aspirate was about the same. We know it's only one small tiny step forward, but nonetheless it's a step! (Praise the Lord!) This probably ensures she will have to endure at least a third round of high does chemo here at MSKCC following this second one she's in the process of even though I pray that after this second round here in N.Y. all of her marrow tests will prove her to be free of cancerous cells. Thank you for your continued prayers!

Monday night she had her piano lesson at Ronald. Her teacher, Bill, walked over to us at the end of the lesson and said, "She's a genius." She's far from a genius, but God has certainly blessed her with a remarkable ability to catch on quickly. Her previous assignment was to learn one new piano song. Christi mastered the next TEN for him. She also called Mrs. Smith and asked her to buy her another lesson book and to mail it from Tiffin which she rushed right out and did. Thanks, Mrs. Smith!

On Tuesday, her counts were still not high enough to start her 6th round of chemo. Dr. Kushner told us he wanted her platelets to be at least 75 so we had the day off. Christi asked if she could go back to the American Museum of Natural History. It is included as a free museum with my COSI membership, so off we went. We had a FABULOUS time. She loves learning and exploring and I wasn't exactly looking forward to starting chemo and enduring two weeks of near hell again so soon anyway. The museum trip was wonderful! What a blessing!

While Christi was in the hospital last week, a college girl with a very similar last name was one of Christi's roommates. What a thrill to learn that the young woman's tumor was removed and was found to be benign (non-cancerous). Praise the Lord! She's still going to have years of check ups to go through to be certain, but nonetheless it was great news and we were very happy for them. One night when I was back at Ronald with a sore throat this woman's sister, Kristi (note the spelling, so similar to our Christi's) was at the hospital visiting her sister. She said she listened to the joy and excitement that Christi displayed while she opened up her mail that night. She read the newspaper article about Christi that I posted outside her hospital door and she also went to her web site. She said that she knew she was called to help our little girl in her fight for her life. She made an appointment to become a platelet donor for Christi. I had no idea all of this went on until the next day, during Christi's platelet transfusion, the woman's mother told me that her other daughter was downstairs donating platelets at that same moment for Christi. I had to pretend that it was no big deal because I could feel tears start to build up in my eyes and I didn't want to cry in front of this woman. I just could not (and still can't) believe that a total stranger would actually go to the extent of saving my daughter's life. Platelets allow the blood to clot. The chemo destroys Christi's and stops Christi's body from producing her own so she must depend on transfusions. When you don't produce enough yourself, you may have internal bleeding which can result in death. Our princess will become more and more dependent on transfusion as time goes along. Other Neuroblastoma mothers here have told me to expect her to need them daily during transplant. The process of donating platelets involves two needles - one in each arm and you must be hooked up to the machine for 90 minutes. Of course much more than two hours is involved with paperwork, preparation, etc. This woman works full time and has over an hour commute home too. Unlike blood, platelets can be donated every 72 hours and they only can be used for about six days after donation. One donation yields two transfusions for Christi. What Kristi didn't even realize was at the same time that she was donating her platelets for Christi, Christi was having a reaction (fever, chills, irritability) to her platelet transfusion because she had "pooled" platelets. Pooled plates came from many different donors. In her case that day, eight different donors. You're less likely to have a bad reaction with platelets given from a single donor. Shayne and I will also be her donors; however, we had colds at the time and thank God for dropping Kristi in our laps to help our Christi. So on Tuesday night of this week, I walked down to the hospital to meet this beautiful angel here on earth in person, to take her picture to show Christi, to take her a small gift and to help her pass the time. I still can't believe the goodness of people. And not only is this lovely woman's name Kristi, with a maiden name so similar to ours, but her husband's name is Thomas. God certainly works in mysterious ways. Thank you, Kristi!!

This week we were saddened that Christi's sweet friend, Olivia, and her wonderful family headed back to Cleveland to finish their treatment at home. We were thrilled that they selected Sloan for their daughter's surgery and radiation as we got to know them and grew so fond of them. Olivia and her darling little sister, introduced Christi to Barbies and Christi loved nothing more than being with Olivia and talking to her on the phone. What polite, kind, sweet children those sisters are! We know that we will get together this summer when our daughters are both cancer survivors. Please remember sweet 8 year old Olivia in your prayers as she fights Ewings Sarcoma. Go, Olivia! We love you!

I also ask you to join us in prayer for the other two neuroblastoma victims treating back in Ohio. Andy is currently going through his transplant and Mason will have surgery to remove what's left of his tumor in early February. May God grant them a full and complete healing and give them the strength to continue on with their treatments.

We're finding each day a little bit more difficult to cope with as we miss little Shayla left back home with Grandma. We long to be reunited with her. I know she's receiving tremendous care, but Shayne and I are really struggling with not being with her ourselves. Plans are being concocted to get her out here for a period of time. We're just not exactly sure how this will all transpire because so much depends on how Christi tolerates treatment, when surgery will be, etc., but one thing is for sure - we'll be wrapping our arms around her in person real soon! Hopefully, for her fourth birthday on February 12th! We miss her so much! Everytime we talk to her on the phone we answer the same questions. "When will you come home?" (We don't know.) "Is Christi still sick?" (yes) Perhaps she thinks the same answers she receives will change if she keeps asking them.

For the month of February, Christi will be the Featured Child on the "Fight for a Cure" web site. This site hopes to raise awareness about childhood cancers. The link is up and running and wonderful "Webby Eric" also has it on the home page. Here's the link if you'd like to go there to read Christi's "story" as well as learn more about all Childhood Cancers.

She's also been receiving many valentine cards each day which has truly been the highlight of her day. I think that little heart icon Eric surprised us with by putting on her web site is responsible for that. She still claims that the best thing about having cancer is getting mail! Thank you, everyone!!! Thank you for everything! Keep shaking those pom poms we can feel your energy here in New York!!!! Here's wishing you warm thoughts!!

In His love, Angela (Christi's Mom) dx.Neuroblastoma IV 9/11/02 non amp mnyc,unfavorable shimada, para spinal mass, heavy bone marrow involvement. Treatment: 4 rounds chemo per protocol 3891 @ Children's Columbus, Ohio, (Cisplatin, VP - 16, Cytoxin and Adrimicine) and 2 rounds chemo per N8 protocol at MSKCC (Cytoxin, Doxorubicine and Vincristine)

Joke from Christi: What do you call a meteor that missed the asteroid belt? (A meteor wrong.)

Quote from Christi: "Enjoy what you've got while you've got it because you don't know how long it's going to last." (This is not in reference to health, but to the new hole in her mouth as she was sticking her tongue through it and made the above statement. It cracked me up!)