Monday, March 17, 2003
RED is for love of those we hold dear.
Happy St. Patrick's Day! They certainly celebrate in a BIG way in New York!! Today we attended the parade. There were an estimated 300,000 marchers and 2 million viewers - absolutely HUGE!
Unfortunately, the NB team didn't believe that Christi's platelet counts would be high enough to go through with her stem cell harvest scheduled for today; therefore, we decided to make the best of it and celebrate St. Patrick's Day here in the city. We are hopeful that tomorrow she will be able to start harvesting those precious stem cells to be frozen and used at a later date.
Shayla and I went to the hospital with the hopes of returning with Christi on Saturday morning. Shayla clung tight to her beloved dog biscuits. While waiting for the elevator, an elderly woman looked down at Shayla and said, "Are those good?" I know she didn't realize Shayla was holding dog food. I laughed and jokingly said "I may be down and out, but I've yet to resort to feeding my kids dog biscuits." I then proceeded to tell her how Shayla loves to feed the dogs we pass out on the street and that we're from Ohio. We both rolled with laughter as the lady then realized Shayla was holding a box of dog treats.
Christi was finally discharged on Saturday afternoon. As we were pushing the girls in their strollers and loaded down with many bags, I had tears of joy streaming down my face. What a tremendous homecoming - if only back to the Ronald McDonald House. Thankfully, no child at Ronald nor the hospital came down with the chicken pox. And we are thrilled to be rejoined as a family of four together again!!!
Sunday morning Christi woke up at 6:30AM. In an effort to allow Shayne and Shayla to get some more sleep, we quickly dressed and headed out for a two hour walk. It was a most beautiful, peaceful morning as we happily rolled along. I took her to Rockefeller Center where we watched the people gather in an effort to be seen outside the NBC Today morning show. We also went to church at St. Pat's Cathedral. It was the first time Christi had been inside that most beautiful church. She particularly enjoyed lighting a little candle for herself at one of the side chapels.
It was 60 degrees in NYC on Sunday afternoon. Shayne discussed going to Central Park and flying a kite with the girls. Of course Christi - the art kid, wanted to make her own kite. Knowing that would take hours, Shayne was able to convince her to go to a store and take a look at the kites displayed there. Upon arriving, the three of them agreed on the perfect kite and like many others here in the Big Apple, we loaded up and tromped off to Central Park. It was delightful! As I watched Christi running around pulling the kite with high hopes of lifting it up in the air, I couldn't believe that less than 24 hours ago she was discharged from the hospital. (Go, Christi!) After our time at the park, we went over to the Upper West Side and found an inexpensive, outdoor cafe. (We were pretty muddy from playing in the park.) Shayne commented, as the four of us sat at the table, that it was the first time that all four of us sat down at a table to eat together in months. He was right - three months I believe. Christi slept and Shayla watched for doggies all the way back "home". It was the perfect day - far from the hospital!
Due to recent events and today's ultimatum with the United Nations, we walked down there to sight see today. (Rolled I should say! Christi's having so much bone pain from her daily injections that she's no longer able to walk.) Christi LOVED trying to identify the beautiful flags flying outside. Once through security and inside the building, she even managed to talk the police officer into feeding the canine dog. (Unbelievable!!! Leave it to Christi! So she was happy that the "working dog" got a treat today. No doggy should be denied!) We picked up a schedule sheet in the UN and there was only thing listed for today: 3:00 PM IRAQ. The amount of media outside was massive! The girls don't understand that we're on the edge of war and the tremendous impact of the UN discussions just down the street from us.
Some have asked me about Christi's hearing loss. The type of hearing loss she will have is most likely in the high-frequency range. (ie. not being able to hear sirens, high pitches) Therefore, we will not know until the results of her audiogram are back how much loss she's had thus far. Also, if she makes it into transplant she will have another drug again from the platin family therefore adding even more to the dosage of platin drugs. (This is the family that has the hearing loss as a long term side effect. Many if not most NB kids need hearing aids.) Finally, the hearing loss is usually seen soon after the Cisplatin drugs are administered; however, I've heard of parents reporting their children's loss on our Neuroblastoma listserv several years down the road. So I hope that explains why "I don't know" about her hearing loss at this point in time.
I'm thrilled to report that my Mom and my Aunt Marty informed me that they've booked a flight and made their hotel reservations. They will be flying out to help on Saturday. Having "reinforcements" will be great - particularly having help with Shayla during Christi's surgery and recovery with be a tremendous relief. I must admit it's pretty tough handling both girls and their different needs at times. Thanks for all of your love, support and prayers! We certainly appreciate all of your efforts!!!
Happy St. Patrick's Day to all being Irish today!
Christi's Recent Joke: Knock, Knock (Who's there?) Jamaica (Jamaica who?) Jamaica some lunch?
Thursday & Friday (bone marrow tests, CT scan, MiBG Scan, bone scan, audiogram)
Saturday (My Mom and Aunt Marty will arrive. Yipeeee!)
Monday (meeting with surgical team)
Tuesday, the 25th (surgery)
After that: Depends on her bone marrow. If it's clear, you'll hear us sing His praises, screaming with joy and you'll look up and see us jumping up and down all the way back in Ohio!!!! (Smile) We're praying for miraculous test results!
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Shayne & Angela Thomas: firstname.lastname@example.org