Friday, February 7, 2003
This is God.
The above sign hangs on the door of another family on our floor at Ronald. I smile every time I walk past it thinking it makes a lot of sense, yet it's really hard to do! Thank you for continuing on Christi's journey with us! You've provided us with tremendous support! These valentine cards that arrive each day are oh so sweet! Thank you! Christi remains a strong-willed little fighter! At 29,028 feet, Mt. Everest is the tallest mountain in the world. I do believe that the mountain Christi is climbing is much, much taller. Keep going, honey, may you soon reach the summit.
Last Friday found Shayne donating his platelets for Christi while she had a full day of chemo. On Saturday, she finished her chemo and then needed a transfusion so the entire day was spent at the hospital again the next day too.
On Sunday, she was really exhausted and didn't get out of bed. We did manage to take her out for a little walk in her stroller. Shayne and I have been thinking that we're extremely cramped in our small room at Ronald and we would really like to have a kitchen. Therefore, we went to an open house for an apartment close by. We were surprised to discover that while it did have a small kitchenette, it was about the same size as our Ronald room and you had to walk up three flights of a very narrow stairway. We knew we could never manage trying to carry Christi, her bags and her stroller up three flights of stairs. But, the real kicker - it was $3,000 per month! It's certainly a different world and a different life style here. We long to be back in Ohio! So, we are now convinced that the Ronald McDonald House is a GREAT place to be and we're THRILLED and very thankful to call it our new temporary home. Some of the families at the hospital have apartments, but we can't imagine how they can swing it. Even before our apartment looking trip I told Shayne I was actually beginning to think that our new "home" was okay. He responded, "Some of the staff members are starting to grow on me too." And I knew how much I liked the house when speaking with a friend on the telephone who questioned my referring to Ronald to "home" as I found myself feeling defense about a friend ripping on my home! Eric has added a link to Ronald. They change the photos each week and the home's Webmaster told me today that Christi's picture will be on it soon.
On Monday, she had her check up and received some IV medication during her routine hospital visit. We were finished in the mid-afternoon. It was a beautiful, spring-like day so we went for a long stroll. (Love the stroller!) What a joy to experience the wonderful toy store - FAO Schwarz. She had a ball playing and checking out all of the toys. She understood the price difference between Toys R Us and FAO and therefore she never asked if she had enough "potty money" in her fancy, yellow sequin and beaded purse. (Thanks, Jim)
Tuesday morning we left again for the hospital to receive some medication through Christi's Broviac port and to have her meet with Anne Marie, her hospital teacher. It was a nice day so we walked again down to SONY Wonder World (It was closed when we arrived on Monday. oops!) and spent some time there. It's a free museum where they have a lot of hands-on things. On our way back home we went to a New York Public Library branch. Christi really enjoyed the huge children's section covering the entire second floor. What fun!! She also found, on her own, the original Pooh bear - the inspiration for the much-loved children's books by A.A. Milne. She got a poster to mail to her classmates and teacher back home. The books and computer games we checked out can be returned to any branch. Yipeee! (We were about 16 blocks from Ronald and there is a branch one block away from the hospital where I'll return the items next week or so.)
Wednesday she had her routine check up at the hospital, her IV medication drip and her tutoring session with the great Anne Marie. While she was meeting with her teacher at 1 PM, I ran down to St. John's Church to pray and to light a candle for Mason who was going into surgery to get his Neuroblastoma tumor removed back in Columbus at noon. (I'm happy to report that he came through okay and is now in ICU. Unfortunately, they were not able to save a kidney and an adrenal gland, but his Mom (who's also a teacher) said, "That's why God gives us two." Go, Mason!! We love you!! That afternoon, we were told that Christi's counts were dropping. Her ANC was down to 700. We knew that our exploring days were about over and it was probably our last day to "shake the dust off of her" before her inevitable hospital admit so off we went to the Metropolitan Museum of Art. What an enjoyable afternoon! Christi was able to get out of her carriage and to walk for a while, but soon tired and needed to ride again. Shayne took along her sketch pad, but she lacked the strength and interest. There is also a chapel here at Ronald. Christi liked the fact that there are "teddy bears in church".
Christi's best times continue to be those spent with her incredible and fascinating teacher, Anne Marie. While her classmates back home get to be in school for 35 hours per week, Christi only gets to be in "school" for three or four hours per week. I'm extremely grateful for Federal Legislation which mandates Christi being permitted to have a tutor when she's feeling well enough to do so. I love when she's happy and having fun. It helps diminish the pain. Of course, Anne Marie pokes her head in the door with great excitement and love and always says in her beautiful and thick Italian/New York accent things like, "Is my precious child ready for school? Oh how are you today darling? I've got such wonderful things for us to explore together today! You make teaching such a joy. I can't think of a better way to end my day." She lays it on really thick and Christi can't grab her IV pole and follow this woman to the little "closet" fast enough! This teacher is like this with all of her students here. Another Mom referred to her as Mary Poppins and that is the perfect description of her. What a gem!
I've placed on the web site the picture of Christi with her fabulous nurse practitioners! These ladies are truly the creme de la creme! We believe that this is one of the many things they do here that is far superior! Christi doesn't have just one nurse practitioner here, but FOUR!!! (I know Christi NEEDS four checking up on her, (smile) but EVERY Neuroblastoma kid gets the same FOUR!) And they are absolutely wonderful!! So knowledgeable, professional, caring, intelligent, motivated, etc., etc., etc. They eat lunch together, come searching for us and share information about Christi with us each and every day. It's amazing how much we see of them all. They are solely dedicated to the childhood cancer of Neuroblastoma and offer us a vast array and a wealth of information! We love this team approach and their constant attention!! What a blessing and a very pleasant surprise!!!! Thank you, Tori, Ester, Minnette and Debbie!!! You rock, ladies!
Eric also put two new PRE-diagnosis pics on the site recently. They're of the other teachers' kids from the Back to School shoot at Staples. That was back in August and it doesn't just seem like a lifetime ago, but an entirely different world ago. My how my life has drastically changed.
We were able to get her weight back on. We are very pleased that she actually weighs three pounds more than she did on the first day of school on August 20th and she has grown 1-2 cm. Her growth will be diminished as one of the many long term side effects of her treatment, but so far she's continued to grow and we thank God for that. She's also continued remained TPN free. We know that one day soon we'll have to go on TPNs, but it's amazing she's still doing so well without yet starting the supplemental nutrition. Goooooooooooooooo, Christi! I'm so proud of you!
Recently, I've been meeting other parents of neuroblastoma children. A wonderful woman named Natalie and her darling little girl were treating here from Florida the past two weeks. I've enjoyed getting to know them. She's also a teacher and her little gal has been through TWO transplants. She's a trooper! This week also allowed me to get to meet a fabulous father who is a physician in Maryland and his cute five year old son who treats here at Sloan. His wife is also a physician and she will be here next week so I'm looking forward to getting to know her too. Sara and Daniel from Minnesota will be back on Sunday for treatment and I'm excited about that. They are so wonderful!
Shayla will be here in just seven (7) days! Yipeeeee!! We can't wait to spend a few weeks with her if all goes well. Shayne told her to breathe now because he's going to have his arms wrapped around her for so long he doesn't know if she'll ever get loose. (smile) The visitation policy at the hospital is age 11 and up only. We have seen younger children on the floor though so we asked a child life specialist about the policy regarding siblings. She replied that it depends on many factors. Christi was there with us and she added, "Like the attitude of the sibling and how much they love the sick sister." The wonderful Trez replied, "That's not usually part of our criteria, but we should take that into future consideration."
Yesterday, my dear friend Becky took Shayla to Cindy's to get her hair cut and then to Sandusky to have her four year old pictures taken. The Picture People is a fabulous store and has been a major part of our lives starting six weeks after Christi was born. Becky reported that they got some fantastic shots of Shayla. Since I've always had the girls' photos taken there for every birthday I knew I couldn't miss Shayla's fourth. Thank you wonderful Becky and also to the fabulous Linda and Bev at The Picture People! I miss you guys!! You have no idea how many people have asked me, "Where do you get those awesome pictures taken?!"
Eric has added a section under "links" called Christi's Clubhouse. This section contains friends our family who are also battling cancer and could use your prayers.
We'd also appreciate your prayers for another darling 7 year old Neuroblastoma fighter here from Louisiana named Rebecca. She's here with Mom and Grandma while Dad remains working. (He's a doctor and has two older sons at home.) This little doll is a very difficult time and like Christi hoping to get to transplant.
LATEST NEWS: Last night, Christi had a very restless night. She's so independent she rarely wants comforted. After a long period of time in which she'd point to us and then point to the door she finally came around and let me hold her and rub her back. As soon as she'd fall asleep, I'd wiggle away and get back in the other bed. She'd wake up after a few minutes and then we'd repeat the routine. It was very trying. She was so miserable. We KNEW she had the dreaded mouth sores. (They call them something sweet like "mouth sores" however, they are really blistering, open ulcers and extremely painful. Hers tend to come in the back of her throat.) She doesn't want to tell us that she has them because she thinks they're a result of not doing her mouth medicines well enough. We continue to tell her that she does a great job of swishing and swallowing her medications, but they are unstoppable due to the potency of the chemo. It's not her fault, but hard to convince her of that.
Today we went back to the hospital. Her ANC was at zero. (ugh!) Her temperature at 37.8 degree Celsius. (38 is an immediate admit.) We were happy and surprised that she didn't need any transfusions; however, we knew the dreaded fever was just around the nearest possible corner. We had them take her temperature again immediately before we left thinking that as soon as we pushed her home, we'd have to turn around and come right back, but again it was 37.8 degrees. (New York had a HUGE snow storm last night and the sidewalks and curbs are a mess! The worst we've experienced.) We came back to Ronald for about three hours before her temperature went to their levels of needing hospitalization so we packed up again and went back. In the urgent care center they gave her morphine which really helped her comfort level. They also administered two different antibiotics. Next we went up to her room - 531B. She should be there for 5-10 days until her ANC rises and her fever breaks. Shayne will stay with her at night and I'll stay at Ronald and relieve him in the morning. We know that this will be a very difficult time for us as it's hard to see Christi suffer and she is extremely irritable when she doesn't feel well. Shayne and I are typically the targets for her frustrations and pain.
Our hearts and prayers go out to the families of the tragic Space Shuttle Columbia as well as all of those involved with the military. Thank you all for everything! I'll add a journal entry when she's discharged or if something changes with her status. May God wrap His loving arms around you and keep you all safe and healthy! God bless you! Take care and thanks!!
Christi's Quote: "It doesn't matter what you look like on the outside. It's what's on the inside that matters."
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