Monday, November 11, 2002
Hello everyone and welcome home, Webmaster Eric! We've missed you!! Hope you and your lovely wife had a safe and wonderful business trip and were able to squeeze in some fun too.
Happy Veterans day to all Veterans. How fortunate we are to live in this great country! Thank you for all you have done and continue to do for all of us!! Thanks!!
We are all doing just fine. This journal entry finds us back at Children's Hospital in Columbus for a scheduled visit. Not quite the scheduled visit we had hoped for, but at least we're not here totally unexpectedly. The cancer remains in her bone marrow so we cannot harvest - yet. However, progress has been made and at least we're here continuing on with the chemotherapy this week. (What a pretty word for such ugly and toxic drugs!) We've just checked in - thank you to Mr. Lee Schreiner's Gifted and Talented class at Southwestern City Schools for this "sweet" surprise waiting here for her. Your banner will completely encircle this room! So cute!!
Last Wednesday (the 6th) was Christi's hearing and bone marrow test. Her hearing test conducted in audiology came back to be perfect. PRAISE THE LORD! We were told that we're not officially home free yet, but the damage typically occurs between the 2nd and 3rd cycles (exactly where we are) and that nothing has happened. Thank you for your prayers! Shayne made the comment of something like, "That's wonderful! We were so worried about her hearing." and the audiologist replied, "With neuroblastoma losing her hearing would be the last of my worries." I didn't want to hear that and to let her take the air out of my sails, but she did.
Christi's blood work came back fine for a "kid on chemo." and then she was sedated in ICU for her bone marrow test. It is so hard watching them put her to asleep and then having to leave the room. I break down every time - so worried that she won't wake up or something will go terribly wrong. Like all parents feel, it's my job to protect her so I think I should always be with her - despite the fact I saw how long those two needles were that they had to insert in her hips to get a sample of the bone marrow out. The anesteologist needed more medicine to keep her perfectly still. (She's a fighter!) Christi did great and we were thrilled that the tests were able to be conducted and she woke up so joyous, funny and cute. What a doll! She kept telling the nurses over and over (It was the medicine.) "Next time do it exactly like that because I didn't feel it. You did it perfect." And, "I have two Mommies and two Daddies." "Why do you have two clocks on the wall?" (The double vision was a temporary side effect and she thought it was a hoot!)
We returned home late that night and two incredible and amazing "Seneca East Kids" brought some kind treats over. I slipped on a hat and coat and stepped outside to talk with them. May God bless you beautiful young ladies - Danette and Alicia! And thank you to friends at Attica's Oak Ridge Festival as well. We called it 'Christi-mas' that night as it was very joyous - like Christmas. We all stayed up way too late having so much fun together. Thank you all! What great memories you've created! We are very humbled.
On Thursday (Nov. 7th) I received the phone call that the preliminary test on her bone marrow indicated that it was clear (The cancerous cells were gone from her bone marrow.) and that we should report at 6:30 AM on Monday to begin harvesting her stem cells to be frozen for her bone marrow transplant this spring. With tears of joy streaming down my face, I called Shayne and my Mom and told Christi the fabulous news. I never slept so well! Shayne put the girls to bed and I was asleep by 8:30PM and didn't wake up until 5:30AM! It was the first time in a very, very long time that I didn't wake up in the middle of the night scared and worried. It was tremendous!
THEN on Friday morning, the phone call came from Christi's oncologist with news that wasn't so great. Dr. Mandy told me that the official tests run in Los Angeles on Christi's bone marrow indicated that cancerous cells remained in 10% of her bone marrow and that it could not be harvested. I do not want them to be put right back in her with cancer remaining in the spring so I'm glad to know the official word even though it's a set back. She told us to report on Monday for her scheduled chemo instead. I received a couple more calls from the hospital on Friday. Neuroblastoma is the "monster of all monsters". They don't really know for sure what it is going to do and how it is going to react. It has the ability to change itself to conquer the chemo. We may see it shrink in the very beginning, but then it may adapt so that the chemo is no longer effective. That's why the concoction is the most toxic possible, shy of killing her; we all hope and pray. Amazing! I cannot help, but making analogies with Satan and this disease. It seems to go hand in hand.
Shayne and I were crushed! I called him at the bank immediately. He tried to pick me up by making a little football analogy and telling me that the coin toss doesn't determine who wins the game and we're just at the very beginning of the game. He also told me that it's these little setbacks that are going to make the victory even more sweet and triumphant. He knew I was pretty down and had to be up for the girls here. Later, he sent me a short email asking me how I was which of course made my tears flow again because it was so thoughtful of him.
As I write, I'm sitting here waiting for them to come get us for an EKG. Because two of the medicines given together cause heart damage, it needs to be checked before beginning the chemotherapy to see what the damage is and how to adjust the medicines if necessary. If they're able to check for gratitude and compassion all three of our hearts have definitely grown in that area. We feel so blessed and thankful that you're all praying for us!!
We're disappointed with not being able to start the harvest today; however, still thankful because when she was diagnosed the cancerous cells made up 80% of her bone marrow and now it's down to just 10%. That's progress, right? Seems like it is and hopefully her tumor is shrinking too. They will scan later this month to see. Now the bone marrow test will have to be repeated in ICU again and hopefully they will determine it to be cancer free for harvesting next month. They need to get her stem cells out soon before too many of them are destroyed (by the chemo) and then they would not have enough to generate her new life in the spring. I still marvel at this whole process. How fascinating!
Shayne's sister (and one of Christi's Godmothers) flew in from Phoenix to stay with Shayla for this round. And I was pleasantly shocked to see that Aunt V shaved off her more than 12 inches of absolutely, gorgeous very long hair to show her support for Christi!!! Thanks, Vaunie! We all love and adore you! You are awesome!! Christi said that they are now "Triplinkies". She certainly knows she's not alone in this! While I really dislike my hair this short, I cannot imagine getting rid of all of it.
Shayla seemed to handle this month really well. Perhaps it's because we didn't have any unexpected stays in the hospital; perhaps it's your continued prayers. She was still demanding, but maybe that's part of her personality as well as part of being three years old. One day when Christi's counts were high enough, Christi's Aunt (and her other Godmother, Tina) drove up all the way from Cincinnati to spend a couple of hours with us. At one point Christi was busy upstairs and Shayla was in the bathroom and it was nice and quiet. Ahh! What an enjoyable time to FINALLY talk with my sister for the first time in eight weeks. A bit later, I thought I'd better check on Shayla because she had been in the bathroom for a very long time. I opened to door and to my horror saw that she had given Christi's kitten, Buttercup, a bath complete with soap and the toilet was no longer working. I know it was my fault for not checking on her earlier. I wrapped up Buttercup in a huge towel and vowed to check on Shayla as soon as I discovered she was being quiet in the future and thanked God that the kitten was still alive! May God bless, Shayla and give me patience with her. May one day Christi laugh about what Shayla did to her cat.
Our friend, Denise, brought us holy communion last Sunday. Thanks, Denise! Christi even played music on her keyboard - just like in church! Well, not exactly although maybe one day she will play in church. Denise was one of Christi's Bible School teachers for the past three years. She brought her some CDs of her Bible School music. They've always enjoyed listening to and singing their children's praise and worship music. It's nice to have some new tunes and it's so precious to hear the girls' little voices singing along.
Christi's art teacher from school was given permission by Christi's doctors to conduct art lessons with Christi. They did a lot of neat things at the kitchen table!! This was certainly the joy and highlight of our past two weeks. I joked with Miss C. that it was one step up from "art on the cart". Always the witty one, she joked right back with something like it was "art for the shut ins" and more fun than one would ever imagine. Sue claimed that WE were good medicine for HER despite the fact that it was truly the other way around.
When we return home, we'll have to continue with the policy of "absolutely no visitors per doctors orders" so the sign will still hang outside our door. We love and miss you all and appreciate your support and understanding. It is Christi's suppressed immune system that is the biggest evil and the greatest danger. She simply has nothing left to protect herself from germs. We cannot take ANY risks. Every caution must be in place according to the orders.
Another highlight over the past two weeks has been Christi's piano playing. She's really taken to this keyboard. Christi has learned the first 19 little songs in her piano book. She plays for at least an hour, often more, each day that we're not at the hospital. I'm amazed at how she's putting together so many skills and doing so well. What's really neat about this is that on September 11th (The day she was diagnosed.) she was scheduled to have her very first piano lesson. She'd been on the waiting list since the spring and finally she was to begin. Little did I know that I would turn into her piano teacher instead of Sister Margaretta. (See, Mom, now we know the reason why you paid for my seven years of lessons - it was for me to TEACH piano since I was definitely not the best piano student. Thanks, Mom!! Christi's not ahead of me - YET!)
This week Christi received a letter that her test scores conducted last spring accepted her into MENSA - the High IQ Society. She didn't really understand what it is all about, but liked seeing the official letter and being told she's very smart. Yesterday she was learning about nouns, verbs, adjectives and synonyms on one of her computer games and actually grasping it. I wish I caught on so fast!
Another HUGE step forward this week was that we hired a Nutritionist out of the Center for Natural Healing in Oregon. We've adored the nutritionist here at Children's Hospital; however, we've felt that her hands have been tied about what she can and cannot do. Therefore, since the nutritional advice had been contradictory to everything we've ever read about good health and because Christi is doing FABULOUS with her eating, we felt it was time to improve the nutritional quality of Christi's foods. She's such a healthy eater; it's going great so far. (We're mainly eliminating sugar for a variety of reasons.) After this round of chemo. we will begin her nutritional supplements which will complement her primary care. We've shared this nutritional protocol with Chrisit's oncologist and she felt it was fine to do this in addition to her medical protocol. We pray that Christi will continue with her healthy eating and will drink the "smoothies" I will prepare for her with the added nutrients in. We're all aware that we're dealing with a five year old here, but if we can make even slight gains we're thrilled.
Some very kind and wonderful folks have created a Smile Quilt for Christi. She was THRILLED to see it! It was so very nice and I think you can add a quilt square somehow if you'd like. You may view it at http://smilequilt.com/christi.html
In closing, I say thank you to all of you. Your prayers mean more than you could possibly know. I read an article about the healing powers of prayer in Prevention Magazine's October issue. It was refreshing to me. Your kindness and compassion is unbelievable. Thank you! Let me share a note that Shayne wrote to one of his former football coaches from the hospital soon after Christi was diagnosed back in September.
"I never knew what happened during those few autumn seasons when a group of boys put on helmets and played a game...........until now. Deep, long lasting friendships were born on those grassy and sometimes muddy playing fields. What we called games then were really just practices for the events that were up ahead. After all these years some of my best team mates remain the ones that I practiced with back then. Irv and Tim "stopped" by tonight. It was their second trip all the way to Columbus. True friends indeed."
We continue to say that we have friends we certainly do not deserve. Tom and Lori brought food over for us yesterday afternoon. How thoughtful to have things ready for me to just label and be able to put in the parent refrigerator here at the hospital. This will not only save on costs of expensive cafeteria and take out food, but even more importantly will keep Shayne from having to leave Christi to run to bring food back for us. We joked "The Healing Powers of Uncle Dudley's Food". Thanks you guys! We thank everyone for their kindness, compassion and help. We feel very fortunate and extremely blessed. Thank you!!
Christi has been reading joke books lately, but hasn't been into telling any so I'm sorry I don't have any of her jokes to share with you for this entry.
PS: I've mailed to Eric a bunch of pictures and art work from the past couple of weeks so I'm sure you'll be seeing new things on the web site very soon. Thanks, Eric!
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