Journal Entry


January 1, 2003

Happy New Year from New York City!! This entry finds me writing from our room at the world's largest Ronald McDonald House! There are over 80 rooms here and it is almost always filled to capacity. There is typically a waiting list so we are thankful to have obtained a room right away. It's much better than we expected. There are two twin beds and a TV and VCR. The kitchen is down on the 2nd floor and we've been assigned a shelf in the fridge. The view of the city is wonderful, except there's no ground to be seen - only the tops of other buildings! Amazing for a girl from the country to observe. We haven't found any other families that speak English yet, but we're trying and I'm sure we will. Shayne has attempted his Spanish, but without success. We had a great high school Spanish teacher and Shayne was even in the Spanish national honorary in college, but we've come to realize foreign languages are not like riding a bike. If you don't use it, you lose it. This has been great for Christi's cultural diversity training as she's heard family after family here say, "We don't speak English." Perhaps Christi will learn a foreign language playing with the other children while we're here. We were also surprised that this house is so far away from the hospital; however, it is the only one in the city and serves five hospitals so it could be much worse. We're extremely thankful to have a reasonably priced place to stay for what could be a long duration. So, there really are such things as Ronald McDonald Houses and you can bet that for the rest of my life my McDonald's change will go into McDonald's collection boxes to help support them.

We arrived safe and sound at midnight on Sunday. Christi traveled like a champ, sleeping three hours of the trip and being in a very joyous mood the entire journey. We made just one stop for gas and food. It took us only nine hours to reach the George Washington Bridge. THEN it took us an additional 90 minutes to actually get into the city! Oh well. Christi created a rhyming song game that we all had a ball playing so the time went by rapidly. God, thank you for allowing Christi to keep her upbeat spirit and happy personality throughout all of this. I thought they were going to search our van to enter the city and I was nervous because it was loaded to the hilt. I wondered how I'd politely yet assertively insist that if they touched anything, they'd have to put it back, but we sailed right through. And we actually found a parking spot right outside on the street!! On the drive out Shayne hinted about possibly needing to find employment. I assumed banking of some sort, but when he was wheeling the luggage cart with our suitcases on it down the hall he said, "I think I'll try to be bellhop. I can do this." As soon as the words were out of his mouth, he attempted to maneuver the corner and a suitcase fell on the floor. He laughed and said, "Well not at the Hyatt or anything, but......" We unpacked, organized and fell asleep about 3:00 AM.

Christi reported to the hospital (8 blocks away - This stroller is perfect, Donna!!) at 7:30 AM for tests and more tests. That afternoon we came back here and took two hour naps. Ahhhh!! Tuesday consisted of more tests. I continue to marvel at what a fabulous patient she is. She's been continually poked and prodded. I know I would not be as kind nor patient as she is being. As long as you explain to her what is happening she goes right along with it. She never complains or refuses despite how absurd the request or how terrible the medicine tastes. I continue to be surprised that now injecting my baby with radioactive material prior to a scan or dumping more medicine into her tiny body no longer even fazes me. As someone who's always been extremely concerned about every thing that has gone into my kids' bodies since before they were born, it's amazing that I just now accept this as part of the process and sign the consent forms without any questions. The CTscan machine she was in yesterday had a speaker that was so loud and she wasn't allowed to move for the duration. I'm thrilled that no sedation was needed, but felt so bad as the loud speaker would tell her when to hold her breath and when to breathe again. I was back with the doctor and technicians watching it all and I did the breathing with the speaker too and it was difficult for me. I can't imagine being five years old! Poor Christi and what a trooper you are sweetheart!! I love you! I'm so sorry you have to endure all of this!! This really stinks; doesn't it? Honey, you're the bravest and strongest person I know. God will protect you and you'll always be my hero!

On Monday evening she was able to have her first real piano lesson. Bill teaches music lessons each Monday so if she's feeling up to it we'll continue to sign her up. He was very surprised that she was only five years old and that she never had lessons except for my weak attempts. She really does love this keyboard. We brought it along and she's been setting it on her little bed playing for us to help pass the time. We've asked him to bring a violin for her to experiment with next Monday if she's able.

Because her counts are good and our chances are about over for doing fun things, now is our time to sightseeing. On Tuesday, we walked down to the Guggenheim Museum. Christi was unable to walk yet because of her bone marrow test. (They took aspirations out of FOUR locations all over her hips, ouch!) She rode really well in the jogging stroller and slept for over an hour of our adventure. She woke up in the Guggenheim right in front of her favorite paintings - primary colors!! She's really into primary colors. She was so happy and Shayne whispered to me, "THAT alone was worth walking all the way down here." We also strolled through Central Park on Tuesday since she's heard a lot about that.

She read My New York which the Gilbert Family sent for her here. (Thank you!) It was a fabulous book and taught her a lot about this new city. We find she keeps going back to that book and checking out the map and sights. She's hoping to see more sights referred to in this wonderful book. I also read to her Tales of a Fourth Grade Nothing and now we're into Superfudge - a series of books about an older brother and his younger brother that live in New York City.

Today (New Year's Day) there are no tests or appointments due to the holiday. We have some sightseeing planned depending on if this fabulous weather holds out and how much Christi is able to tolerate. Tomorrow we will have a meeting and the plan of attack will be established with this great medical team. We've been told that intense chemotherapy will begin on Monday. We're ready!!! Until then we'll enjoy each moment that she is practically pain free.

This laptop computer continues to lock up and shut down so we don't think it's really working properly after all, but at least it's usable (so far). We're in the process of getting the data saved and then we'll let Christi play her computer games on this machine and get a new one working very soon (Thank you!). The email connection in this room is lame at best (connecting at about a speed of 19-20) much different than the super fast pace I've grown quite fond of at home (300). (Smile) Also, here we need to use a calling card to send and receive, unlike that awesome free service in Columbus. We're doing as much as possible off line and then connecting just to send and receive, but it's still very very slow. There may be a different way, but again we haven't made friends here yet that we can communicate with to investigate the possibilities. I'm so grateful to have this computer and to have Internet access at all. It's been marvelous for communication and has provided tremendous comfort not only to us, but for our family and friends back home as well. Also, those who've had Shayla have been emailing us with her daily events and it's wonderful to know how well she's being cared for. Thanks, everyone! She probably won't want to live with us again because of your kind and special treatment. (Thank you!) I'm so glad to hear she's being so good for you. I'm praying that it continues. She really is a sweetheart!! She also has Shayne's always happy and outgoing personality. She's definitely the social one where Christi is more quiet and enjoys being alone.

This month Christi will be a featured child for the Make a Child Smile organization. You can see her picture and read her story on their web site at: http://www.makeachildsmile.org This week I received an email from them asking if Christi could read because I checked YES, but they emailed that she was only five. I emailed back saying, "Yes, she taught herself to read when she was only four and currently has a second grade reading level." Her wonderful teacher (who we will desperately miss out here) told me that she wanted to have Christi reading at a third grade level by the end of the year and because of the rapid progress she was making she thought that Christi would be able to do it. I'm so used to her giftedness that it no longer fazes me, but when others comment on it it catches me off guard. We all three had to laugh over that email questioning if she could really read when I read it out loud to the other Thomas Team members. Her little mind is fascinating. I remember when she was only two and doing some things that my kindergarten students were not yet able to do I told her, "God tucked a really big brain in there Christi. You're going to have to do good things with it!" God, please let her have a future and use the talents you've blessed her with to do good work in your name. So many people have emailed us sharing that Christi has brought them closer to God and that they've been praying and going to church more than ever before. I think that's fabulous that so many people are now closer to Him and that she's affected so many people in her short time on this planet. I know I'm just a bias Mother, but I think she can continue to do great things like that in her lifetime.

We still believe that we made the right decision for Christi by moving here even though leaving the support and the safety and security of home will remain an issue. I've always joked that I need to be extremely careful in making decisions for my daughters because I want them to follow my example and to be just as careful making my nursing home decision! So far I think this was best. I'm really impressed with the medical team and their professionalism! Wow! We're slowly getting things figured out here in NYC. We've found this city to be more friendly than we ever expected. Please don't worry. We've definitely come to the right place. We're still in the process of getting some things set up, but with time we'll have our "shop" set up here soon and will feel more comfortable. Thank you for your continued prayers! We love and miss you all!!

Last night after Christi and I fell asleep about 10:30PM Shayne walked down to Times Square. He said it was blocked off at 4:00 PM, but he was able to get up on a hill and watch the ball drop. He's hinted for years about wanting to go to NYC to see the ball drop in Times Square on New Years Even so while it's horrible that this has happened, I'm glad he can check that one off of his "to do" list as I've never had any desire to stand out there in the freezing cold with 2 million of my closest friends. (hee hee). I'm happy he was able to view the big drop! Yay, Shayne!! Here's our motto for the year: Cancer Free in 2003!! And here's wishing you and yours a joyous and healthy new year! God bless you!!

Sincerely,
Angela (aka Christi's Mom)

Joke: Christi hasn't come up with any good jokes recently but we thought it was cute on our first day in the city when she asked, "Why are so many cars honking their horns?" We explained it and she said, "In the country we just beep friendly beeps." We didn't get it so she further explained that when we go by our friends' houses we sometimes honk our horn in a nice way to say hi, not MOVE IT!!! Another day she asked, "If this is NEW York, where is OLD York?"


Christi's Story
written by mom Angela

Make a Child Smile.orgOn Monday, May 12th, 1997 a beautiful, seemingly healthy 8 pound, 4 ounce precious baby girl entered the world. A perfect baby, she was named Christine Shayna and we always called her Christi.

Throughout her young life she was extremely active, alert, silly, fun loving and smart. She always amazed us with her little mind. At age 18 months she knew all of the alphabet letters, at 24 months she could count to 54, at 36 months she knew all of the letter sounds. Christi taught herself to read and could add and subtract positive and small negative integers and do simple multiplication when she was only four years old. She thrived last year in preschool and was so anxious to finally start school and to be in the first grade this year. Her future looked so bright!

She was always so healthy (or so we thought) and only had minor sicknesses throughout her young life. Then, she started complaining of back pain in April and May of 2001. We took her to her pediatrician and to the emergency room for severe back pain on about five occasions. Each time we were told it was constipation and then the pain would go away for a while. We were hesitant to take her back when she complained because the physicians kept saying there was nothing wrong. She didn't complain of back pain much at all during the summer, but it started again a few days before school began. On her very first day of school, I woke her up and she was absolutely thrilled and excited beyond belief, but then quickly crawled back in bed and said that her back hurt and asked if she could rest it for just a little bit. She must have pushed the pain out of her mind because she quickly came around and wanted to go to school and take a present to her teacher. She had a wonderful first day of school!!

After attending school and thriving there for just ten short days, I brought her home early on a Friday with a low grade fever. The next day I took her to her doctor and she was put on antibiotics for a sore throat. On Sunday she was still restless and not moving from the couch or her bed. Her low grade fever remained. Suddenly, she woke up from her nap screaming in abdominal pain and yelling that she couldn't breathe. Daddy carried her out to the van and stayed with little Shayla while I took off for the emergency room. They couldn't find anything wrong, but admitted her and I was thrilled that finally we were going to get to the bottom of this. Nothing was found (that I was told of) on Monday and I thought we were going home at noon on Tuesday. Then the doctor walked in followed by a nun, priest and a nurse. They told me that they found a tumor along her spine and around her heart and that she needed to be transferred to a Children's hospital.

Many tests were run, two hours from home at Children's Hospital in Columbus, Ohio. On September 11th we were told that our cherished 5 year old 4 month daughter had Neuroblastoma, a rare childhood cancer and that it had spread throughout her tiny body and into her bone marrow. (The most advanced stage 4.) Her prognosis was a 35% chance of surviving for 2-5 years and a 5-15% chance of surviving for twenty years.

When she's not in the hospital she is in isolation - not permitted to attend school, church, restaurants or stores. We're making the best of it and trying to keep busy each and every day that we're home and thankful that we're not in the hospital again.

She's started intensive chemotherapy and this will be followed with surgery, radiation, a stem cell transplant and then six more months of chemotherapy. So far she's doing fabulous! Many have told us that they've never seen a patient tolerate her treatment so well. We know it's going to be an uphill battle that we're just embarking upon. The future now looks gloomy at best, but with Christ, all things are possible and with Christi - one never know what may happen next! (smile) We have a team of prayer warriors fighting daily for this little child of God and we invite you to join in this bloody war, as Christi fights for her life this year. Thank you and God's blessings to you all!!

Abilities:
See: Yes.
Hear: Yes.
Talk: Yes.
Walk: Yes.
Read: YES!!!
Use hands: Yes.

Siblings:
Sister Shayla, age 3

Child's Interests:
Christi enjoys the Care Bears, Magic School Bus, Dora the Explorer and cats. She is learning to play the piano and thoroughly enjoys practicing.

Christi also thrives on art of all forms. Up until her diagnosis, Christi was active in ballet, gymnastics and swimming lessons. She was to begin her piano lessons on the day she was diagnosed; now I am attempting to teach her since she is in isolation due to her greatly weakened immune system.

Sibling's Interests:
Shayla likes Care Bears, Blues Clues, Clifford, Dragon Tales, cats and dogs, gymnastics and Dora the Explorer

[Top]