Journal Entry


Friday, April 25, 2003

"The doctors told me I would never walk again, but my mother told me I would, so I believed my mother."

Wilma Rudolph "The fastest woman on Earth" (three time gold medallist, 1960 Olympics)

Before returning to New York, I emailed the above quote to another NB Mom. Her daughter's NB is the most similar case to Christi's that I've noticed so far. This little princess also has her main tumor along her spine. (Unfortunately, months ago she was paralyzed as a result. Please join us in prayer that this is not permanent and that she will walk again.) She also had heavy bone marrow involvement and hasn't been clean enough to make it to transplant. Recently, Akaida received MiBG therapy in Philly. Be sure to check out Akaida's web site in Christi's Clubhouse at http://www.akaida.org and please remember her in your prayers. (She was one of the "Prom Queens" here at MSKCC last year. What a doll!)

When we were home, Christi had a "Top Five" list of everything she wanted to see and do. (Of course this list kept growing. smile). On her "Top Five" list from the beginning of its creation in New York was visiting her "Explorer Friends" at COSI and visiting her nurses at Children's Hospital in Columbus. Driving all the way down to Columbus before going to New York certainly was not on our way, but after the van was loaded - off to Columbus we went. Christi had a ball at COSI and once again did not have time to explore everything she wanted to do there. We thank Explorer's Traci and Jenn (Oh! I mean Harriet and Elizabeth) for their awesome hospitality. What tremendous young people you are and how fortunate COSI is to have you working for them!! Thank you! Thank you!! Here's wishing you yummy goat cheese!!

Even though Christi was really exhausted after the morning spent at Aunt Marty and Uncle Jeff's home and then the afternoon spent at COSI, she still wanted to go to Children's Hospital to visit. (It really cracked us up the night before she started making "art" to give to the "sick kids at the hospital". Even though her disease is far more serious than the majority of the kids there, she still doesn't put herself on the "sick kid" list. This kid's compassion for others continues to amaze and impress me.) How awesome it was to walk into that beautiful facility and see so many friendly faces. Oh, how I wish Christi's cancer would have responded to treatment there and that we never would have had to leave!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Children's Hospital is a beautiful place with beautiful people!

Christi passed out some bubbles to the nurses. It was great to see such fine folks after being gone for months. And while disappointed that Christi's friend, Delaney, was hospitalized again, we were THRILLED to get to catch up with her. What an awesome kid! Christi sat on delightful Delaney's bed and played games. Delaney recently finished her last chemo (#14) and we hope and pray that this is her last hospitalization - EVER!! Delaney's web site is in Christi's Clubhouse at http://www.caringbridge.org/oh/teamdelaney. We love you, Team Delaney!!!!!

We also wanted to take a little something to our NB fighting friend, Mason too. He is in transplant now. We were disappointed that his parents weren't there at the time so we weren't able to see anyone, but we were happy to learn that they stepped out to get a bite to eat and to take care of themselves during this trying time. Transplant is a very scary, period with many ups and downs and long, stressful days of seeing your precious child suffer. Mason is in our daily prayers and he is doing great (all things considered). We are so proud of him!!! Gooooooooooooo, Mason! We love you, Ream Team!!! Keep kicking!!

We left Columbus at 7:00 PM with the intent of driving through the night so that the girls would sleep and not mind the ten hour drive. Well, I think our COSI Explorer friends have worn off on us. When they drove out to New York to help us during our "chicken pox ordeal" they made a wrong turn in Pennsylvania. Shayne and I couldn't believe it when WE did the same, exact thing!! Oops!! (Does COSI need any more explorers? Shayne will need a job when this crisis is over and I think he'd fit right in!!! hee hee! Do you need a banker on the island?) It all turned out fine, but we wondered if going through Philadelphia first was God's way of telling us that we'd have to go there for Christi's MiBG treatment and maybe He was showing us that road ahead of time to prepare us. I don't know, but it did give me something to think about. We pray that is not the case!! Coming into the city this way, we drove past the Liberty Science Center in Jersey City - just before the Holland Tunnel.

Christi, our little science lover, would be THRILLED to play there we thought. And Shayla's always up for an adventure! I was sure it was included with our COSI membership so we made a mental note to take the girls there as soon as we could. I also noticed a huge Magic School Bus exhibit banner hanging on the building. That was Christi's favorite TV show last year. We have not been able to find it on any channel out here, but I really believe she learned so much science from that great show last year and she loves to borrow Ronald's Magic School Bus videos. I remember driving her to swimming lessons one day last summer and she was in her car seat explaining plankton to me. (Yes, I learned some things I had forgotten!!) Yesterday, I checked the Liberty Science Center's web site and discovered that it will be a free museum thanks to COSI's partnership and that Ms. Frizzle will be there for a special appearance tomorrow from noon to two. We've made plans to be there!! Christi will be so happy to go riding on the Magic School Bus with the Friz!!! It will be a surprise for her. Yipeeee!!

With just one stop on our journey, we arrived back in New York City about 4:30 AM. After Shayne unloaded the van and returned from the parking garage it was 6:00 AM. Praise to the Lord for safe, smooth travels!!! Thank you, Shayne. You amaze me every day with your many talents! I hope I didn't snore too loud on the drive out. (smile)

Shayla started back to her awesome preschool which will again be just three mornings per week. (It's letter "P" week. Perfect for our little Pokemon lover!! You know what she's taking for sharing time!!!!) She also went back to her "Start with Art" classes at the Met while Christi endured her battery of tests this week. She's such a trooper! I'm so proud of her! I know I could not do it myself. (At least not with a smile on my face like our little dancer.)

This afternoon we met with the doctors to find out the results of one of the tests - the MiBG test. This is the test that indicates how much cancer is in her bone marrow. They injected her with the radioactive isotope yesterday. I was praying so hard that when the nurse went to give me the card indicating that Christi would set off metal detectors at airports, etc. she almost had to shake me because I was so intense in my prayer that Christi would, for the first time, have a MiBG scan that didn't "light up like a Christmas tree". Needless to say, I didn't sleep much last night knowing that we'd at least know something, from one of her tests within hours.

The girls have been getting along like best friends lately. Shayla has managed to get her big sister interested in Pokemon and they play Pokemon a lot together. Shayne made a comment that if they're going to be into Pokemon, we're at least going to make it educational. We've discovered that there are 254 Pokemon, so the girls are trying to memorize them all. (oh my!)

The girls went to the hospital's awesome playroom with their staffed child life specialists and volunteers, while Shayne and I went to our meeting this afternoon. Christi's MiBG scan had yet to be read officially; however, Dr. Kramer pulled it up and gave her take on it. It appears to her that Christi's condition remains unchanged. She said she'd label it as "stable" according to this one test and her untrained eye. Shayne and I studied the screen and both agree with her read. It looked the same as before. She asked us if we wanted to go ahead and go to CHOP for MiBG treatment, or to try another round of 3F8/beta glucan treatment on this Phase One clinical study. Since there appears to be no long term side effects (only short term horrendous pain at the infusion time) from this and there is a lot of danger after the MiBG treatment, Shayne and I agreed to go ahead and continue this treatment for the next two weeks. We were disappointed that we didn't see an improvement, but I guess we need to be thankful that at least her disease didn't progress. I'm anxious to see the results from her CT scan and especially her bone marrow aspirations and biopsies which will be reported late next week. (Thanks for your prayers!)

We are very humbled by your love, comfort and support. God didn't mean for us to go through tough times alone and you are living proof of that! Thank you for being Christi's cheerleaders and for getting us through each day of her journey. Words cannot express our heartfelt thanks and appreciation!

Much love and thanks,
Angela

Christi's Jokes: What does the headless horseman say when he plays a game? (You get a head start!) How do you spell mousetrap? (C-A-T)

Christi's Quote: "You can do anything if you put your heart into it."

What's Next?
For the next two weeks, beginning Monday morning, Christi will go through the 3F8 (monoclonal antibody) daily treatment with beta glucan per this Phase One Experimental trial. While truly a miracle, we pray that this rid her body of NB.

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