Journal Entry


Friday, February 14, 2002

"For I know the plans I have for you, " declares the Lord,
"Plans to prosper you and not to harm you,
plans to give you hope and a future."
~ Jeremiah 29:11

HAPPY VALENTINE'S DAY!! I hope this finds you safe, warm and well!! Christi was hospitalized for neutropenia and fever (low counts and possible infection) last Friday. However, this hospitalization has been event free and is going extremely well. We thought we'd be out of here by now, but hopefully on Sunday. Her ANC has been at zero for over seven days. (under 500 is dangerously low) She's doing very well all things considered. One morning, she heard the team of Doctors out in the hallway, so she quickly hid under her quilt. When they walked in she popped up in a cat - like stance and started smiling, meowing and purring for them. They all started laughing. It was quite humorous! Her comfort level was so much higher than her last admittance for the majority of the time. What a pleasant surprise!! Don't get me wrong, she still had her miserable moments, but it was nothing like before. Her fever never went very high and nothing grew in any of the cultures they collected. (Praise the Lord!) She received five transfusions of blood and platelets. Her mouth sores (ulcers in her throat) prevented her from eating anything for five days; we'll work to get the weight back on her soon. Also, she did not have a roommate and we were in a HUGE room with two large picture size windows for the entire week! What a treat! We called it the Presidential Suite and really enjoyed our privacy and not having to worry about disturbing another family by being too loud or silly. Thank you, God! We decorated it for Valentine's Day (Thank you friends!) and tried to enjoy the extra space and privacy of this stay. (I've learned to be most thankful for the little joys in life!) It is surreal though that in the very next hospital room is another family from the Ronald McDonald house whose child is now just being "made comfortable". Why must these children suffer even in the end????

On Saturday, Shayne told me to take a break for the afternoon so I went to exercise at the gym. Before I left Shayne and I made our final emergency plans in case of a terrorist attack. The day before we were put on an increased level of warning (orange) and subways were mentioned as a potential target. Well, just as I was finishing my workout, we were told that we had to evacuate. Of course I knew this was "it". I went to the locker room to quickly change and said to the woman changing next to me, "Is it the whole city or just the upper east side?" She said, "It's just this gym. There is a gas leak." Oh! What a relief! I knew I could deal with a gas leak. (smile) Next, I ventured out for a subway ride to Grand Central Station and Times Square. After exploring Times Square for a bit, I walked to Rockefeller Center where I watched the ice skaters and I walked around inside Saks Fifth Avenue. I also attended Mass at St. Patrick's Cathedral. What a gorgeous church!

Monday night Shayne went back to Ronald to call his Grandma and to rest better for the night. He said that he was going to try to figure out the cross town bus the next day so that we could cheaply get to the Natural History Museum (We think Shayla will LOVE it there and it's included as a free museum with our COSI membership) as well as to Lincoln Center. The next round of chemo has loss of hearing as one of the toxic effects so we figure Christi better hear opera and symphony now as she may never again. Instead, he worked on financial issues and cooked up a little surprise for me. Late Tuesday afternoon Shayne came back and gave me my Valentine's present. I never was expecting anything so what a tremendously sweet surprise! He stood in line for over an hour in the cold afternoon weather at the half-price theatre ticket booth in Times Square for a ticket for me to see Les Miserables. (After sixteen years, it's leaving New York on March 16th.) He also gave me an unlimited subway pass for the night. He is the most thoughtful, considerate and caring man alive! I went back to Ronald to get a shower and I put on a sweater a friend mailed me so it would be like she was going with me to see a Broadway show. Since I had an unlimited subway pass for the night, I first went down to the World Trade Center site. (Six weeks before the Attacks on America, I spent over an hour in one of the towers waiting in line for the half-price theatre tickets.) The subway brought me up right at the site. Unbelievable! It was much larger than I had expected and much, much sadder. Definitely a somber area of the city. The viewing platform has been taken down so I walked the entire perimeter as a way to show my respect for the thousands who perished that horrible day and to pray for comfort for their grieving families. I then went to see Le Mis. It was super. The only thing that would have made my Valentines better would have been for Shayne to be with me. While I thought that the police officers were plentiful on Saturday, there were even more out in force on Tuesday evening in Times Square and in Grand Central Terminal. It feels like the tension is very thick in this city right now. In August, the girls and I stopped by the bank to visit with Shayne for a moment. Someone was in his office, so we waited in the lobby. One of his co-workers came over to me and said, "Shayne just loves those little girls. He likes you and everything, but he really adores the kids." After his awesome Valentine gesture, I think he really loves me too. (Thanks, Shayne! I've been so blessed!!)

On Tuesday evening, I was planning to go down and spend some time with Kristi who was again this week donating her platelets for Christi. (You're such an angel, Kristi!) Shayne was able to leave Christi with a wonderful volunteer and go down to tell Kristi that he sent me off to see a show. I knew she'd understand. She's such a kind and beautiful woman! On Wednesday she came to visit Christi bringing her a very cute balloon and Italian rice balls! (Yummy!) Christi's cancer has definitely shown us tremendous humanity. What a blessing! What awesome New Yorkers!!

Wednesday was Shayla's fourth birthday! I remember early that morning, four years ago. Before Shayne and I left to go to the hospital, I went into Christi's room where she was sleeping and Grandma was staying back with her. I whispered to her that her life was about to radically change and that she'd be a big sister in just a few hours. Now I realize how Shayla's life has radically changed as a result of Christi. We were able to talk with Shayla on the phone on her birthday. I again told her the story she always loves to hear. She (like Christi) was a breech baby so I had a scheduled C-section. It was wonderful with my best friend, who is also an RN, holding one hand and Shayne holding my other hand. I knew I was literally in the best of hands during the operation. Moments after Shayla was born she was screaming and screaming. I asked to see her and they held her very close to me. I started talking to her telling her how beautiful she was and that I'd always love and care for her. Almost immediately after I started talking, she calmed down and seemed to stare into my eyes. I was convinced that she knew my voice and felt comfort as a result. It's a wonderful memory that I'll forever cherish and Shayla loves hearing the story of first meeting Mommy. Shayla will be joining the Thomas Team again here very, very soon! (As I type she's on the way with her Great Aunt Marty and her Aunt Tina! - Yipeeeee!! It's been a long eight weeks for all of us to have been separated - not to mention all those weeks we were also separated back when we were treating in Columbus.) She told me on Wednesday that her birthday wish was to "be with Mommy and Daddy". It broke my heart, but I told her that her wish would come true in two days! Now in a matter of hours she will be here!!!!!! YES!!!

Shayne's mom was often playfully referred to as "Granny" by Shayne's nephew Joshua. When she became a staple as a baby-sitter for Christi, Shayne started calling her the Granny Nanny. Christi corrupted this to "Nee Nee" as she could say it as a toddler. Nee Nee has definitely earned that moniker. We are deeply indebted to Joan (Grandma Nee Nee) who once again rolled up her sleeves to play "Mom". This time it was to take Shayla to raise for the last six weeks. She gave "Little Orphan Shayla" the consistency and the stability she needed. On top of that she has handled most of our "home" issues including: the flooded basement, drywall (Thanks cousin Randy), and other items too numerous to mention. We wonder if there is no limit to what we can thrust upon her. Thanks, Joan. We love you!!

Thank you also to my dear sweet teacher friends back in Tiffin who held a Birthday Party for Shayla on Wednesday evening! You've blessed us all! I'm sure she had a BLAST and probably taught you all a few Pokemon things. I'm not sure how she got on this kick, but we've found a Pokemon store here in NYC and we're planning to take her there. Ahh, to be four!!

Shayne donated blood for Christi on Wednesday evening. (They share the same blood type - A positive.) He was pleasantly surprised to discover that one of the great Dr. Kushner's research assistants was also there donating. So, ya know Shayne, he peppered her with questions too. I was so very thankful that God put her there to answer Shayne's questions that evening. Thank you, Karen! It also highlighted the fact that for many of these folks their work is a calling - not just a job. Much is written about cancer treatment being a big drug company conspiracy; however, that fails to explain the true caring approach of most involved in fighting this disease.

A very kind, caring and thoughtful friend of a friend brought a fabulous home-cooked meal to us on Thursday. (Thanks, Maren! And thanks for taking the time to chat with me at Ronald. You are an amazing and intelligent woman! Thanks for sharing your many gifts with the Thomas Team. I'm positive it was the best food in the entire hospital that night!) Maren and her friend, Robin, have been spoiling and teasing Christi with little puzzles and treats in a Chinese theme over the past few weeks leaving "drops" and clues at Ronald and on our email. A trip to Chinatown is in store for the Thomas Team when the weather warms up and Christi's counts are high enough to venture out again. She's very excited since Robin and Maren have taught her a lot about China through their very creative means. (Thanks, Ladies! And I remain convinced that you're really college students, looking for charity work to list on your resumes! You're so full of positive energy and creativity as you conduct your random acts of kindness! People that I've never even met just can't be that nice! You're definitely the exception!! Thanks for being angels on earth for our family! God bless you talented and gifted woman!! Thanks for keeping us upbeat and always thinking!!

A while back, Christi and Shayne were talking about all of the good things that have happened to us as a result of Christi's cancer. Shayne was talking about all of the great people we've come to know and love. Christi chimed in with "like Doctor Mandy." Christi is really fond of her wonderful oncologist back in Columbus. And we appreciate Dr. Mandy's continual work helping to answer our questions and to check in with us via email. They really care about kids in Columbus.

Speaking of caring staff members from Columbus, one of the awesome nurses (Shea) we had at Children's came to Sloan today bearing goodies. Those fabulous 6th West floor folks put together some items to keep the Thomas Team fighting in the battle! (Thanks!) We wish they would have sent themselves too! We tried to keep this great nurse here and to get her to sign a contract to stay in NY and to care for Christi, but unfortunately for us, Shea will be returning back to Columbus. Shea "saved" one of Christi's first IVs (avoiding yet another stick) and she was with us during that extremely difficult time of first hearing the horrible news of CANCER. Also, when Christi had her first fever and we rushed to the ER, she and the Fabulous Frank saw that Christi was in the ER and they actually came all the way down to say hello and make us comfortable in the ER! We felt so loved, really bonded with them and miss those great Columbus people so much. Thanks and love to you all! We hope to be back to visit in Columbus and to bring YOU treats as soon as possible!! We miss all of our Children's family very much!!

This week I was pleasantly surprised to open a package that my teacher association friend, Marj, arranged. Lee, a talented artist, takes children's art work and turns it into fabulous pieces of jewelry. She's been featured in Rosie and Victoria Magazines and has been named Entrepreneur of the Year. The jewelry is so lovely and looks exactly like Christi's art. Lee took the pics off the web site. Amazing! Tears were flowing as I was checking out the gifts I will treasure forever and will wear close to my heart. Also, she put Christi's trademark "cat" on HER web site! So sweet! You can check out Christi's cat, Lee's awesome jewelry and maybe get a gift idea or two at http://www.totallyoutofhand.com (Thanks, Marj and Lee!!!)

There is a foundation for Neuroblastoma started by a wonderful woman who's son succumbed to this horrible beast. She has added Christi's picture under the "About Us" section on their site. You can learn more about this organization at http://www.cncf-childcancer.org They also hold a neuroblastoma conference in Chicago that I am hoping to attend in the summer.

I'm not sure what the Guineas Book of World Records is for the number of valentines ever received, but I'm willing to bet that Christi could be a winner. (Thanks Anne, Eric and all who sent her a valentine!) Happy Valentine's Day to you!!! She had a very good day!!

Shayne is officially no longer a part of the Old Fort Banking Company. Being unable to predict a return date to Ohio and because our belief that Christi (and now Shayla) need two of us here at all times led to a decision to have an amicable parting with his employer. While it has been extremely difficult for Shayne to accept this because he absolutely loved his job, it is positively the right thing for us at this time. Everyone at the bank has been amazing. We thank them a million times over. One of our great blessings has been the realization that a compassionate employer surpasses any other benefit that can be offered. Special thanks to Mike, Larry, and the Gillmor family for the ongoing support. The Old Fort Bank is truly an exemplary organization. So now as a part-time kindergarten teacher I am the official family breadwinner! (Thank you, Seneca East Schools. Goooooooooooooo, Tigers!!!!)

We'd appreciate your prayers for Delaney. Her wonderful Mom told me that Delaney will be undergoing an unexpected surgery very soon. (Delaney is Christi's darling and daring six year old friend from Columbus fighting Ewing's Sarcoma.) Her web site is http://www.caringbridge.org/oh/teamdelaney.

WHAT'S NEXT?
On Monday, Wednesday, and Friday she'll have her usual check ups at the pediatric day hospital and may need some transfusions as well. On Tuesday, she will be sedated for her bone marrow aspirations and biopsies testing. (We hope she wakes up happy as that has NOT been her past practice.) She'll also receive her MiBG radioactive isotope injection. Her MiBG scan will be on Wednesday. Please join us in prayer for cancer-free bone marrow tests and MiBG scans. Thank you!! Keep shaking those pom poms; we can feel your spirit!! Have a wonderful Valentine's Day! We love you!! God bless you!

Much love,
Angela (aka Christi's Mommy)

PS: Several people have inquired if our mail has been arriving safely. To our knowledge everything is accounted for and we are not aware of any problems whatsoever. (Thanks to the U.S.P.S. right, Aunt Joyce and Nee Nee?!)

Christi's Joke: "Knock, Knock" Who's there? "May." May who? "May I kiss you?"

Christi's Quote: "Everyday is a special day!"

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