Journal Entry

Tuesday, November 19, 2002

Greetings! I hope this finds you all well! This journal entry finds us back at home. How wonderful!! Today is also the day that Mom and I share a birthday. I'm 35 now. Mom???? hee hee hee! I LOVE you!! I'm sorry I cannot meet you for our traditional "birthday dinner out" but I pray that next year we will celebrate together once again!

We know we've just begun this very long journey with Christi, but so far thing are going along as scheduled. The EKG and ECHO tests that were conducted Nov. 11th indicated no damage has yet occurred. Although heart damage is a common late occurring effect with her particular meds so we continue to pray for her heart to remain healthy and sing His praise that so far she's suffered no damage. We hope what does occur later down the road will be minimal.

Her third round of chemo went fine - the best so far, actually! She had some pain and some vomiting, but we know it could have been much, much worse. She lost 1.5 pounds at the hospital, but is eating again now that she's home. We kept her spirits up by having a little 1/2 birthday party for her and doing lots of art projects and piano playing. She also found a Little Tykes Cozy Coup that allowed her to "drive" all over the 5th floor. When the nurses would teasingly ask, "Do you have a drivers license?" She'd reply, "No, but I have a library card and a YMCA card." (It does look the same now doesn't it?!) We were told by more than one nurse that they've never seen a patient tolerate treatment so well. They would often say that they liked coming into her room because it's always a party in action! As soon as she's awake, I open the blinds, turn on the lights and music and roll out the art projects, books and games. She does get tired and typically takes an afternoon nap for a few hours, but that's a great time for Shayne and I to catch up and get things taken care of. She may have developed an allergic reaction to one of the chemo meds so they treated her before administering it the second day and will continue to do this in the future when she gets that particular one. Like that's all we need on top of this!

This was our best round as far as nursing comfort as well. We FINALLY had good consistency in nursing care. Wonderful RN Lisa Z. was our nurse for 5 days in a row! Wow! (We've never had the same nurse for more than one day.) And she was fabulous; definitely a sharp crayon in the pack! Our complaint from the very beginning has been the lack of consistency in nursing care on J5. We've probably had well over 30 different RNs not to mention countless PCAs during our stays. We believe it's best for Christi to have the same nurse whenever possible for a variety of reasons. The two times I complained to Supervisors about always having different nurses I was told that "there is a nationwide nursing shortage". Being the child advocate that I've been trained to be, that answer didn't go over very well with me. Perhaps, now we've got the problem licked and Lisa will be able to be scheduled for us when we are there.

While in Columbus, a fabulous thing happened. One of our former Japanese college exchange students, Mika - 1995 now 29 years old, and her husband, Katsu - 45, flew in to meet Christi. Shayne and I were their witnesses at their 2001 wedding in Hawaii. Mika and Katsu went through 30 hours of travel just to spend about 48 hours here in America. They stayed at a downtown hotel. Katsu is a Ph.D. and a Pharmacist at a hospital in Sapparro. He studied a lot about Neuroblastoma after Christi was diagnosed. They brought tea and had a "real" Japanese tea ceremony with Christi, created origami and calligraphy, listened to Japanese music and made their most delicious rice. It was absolutely wonderful and refreshing! If we would ever be so fortunate to get to go to Japan, we'd only be a hindrance to them. They have an impressive command of the English language and are such intelligent people that they were an unbelievable help to us. We hope to have our family visit them (and our other four wonderful exchange students and teachers) in Japan one day!

A humorous hospital event that happened was that I was locked out of the hospital in my slippers. I went down to the surgery waiting room to check on the parents of a little boy that we've become quite close to at the hospital. (Andy - 2 years old, Neuroblastoma Stage 3 He's three months ahead of Christi in treatment and on an identical protocol.) After that visit I went to put in a prayer request for him and a special baby, Trey, in ICU and to pray at the 2nd floor chapel. I had to get key access to enter the chapel area (Now that's friendly! ha! The Priest completely agreed with me when I vented to him later) and then when I went to leave the chapel, I could only get out. Thanks heavens a kind staff person came along, believed my story and let me back in. Andy got along OK in surgery and should be out of ICU and back on J5 soon. His tumor (located lower than Christi's) was around his kidney and they had to remove his kidney, his spleen and 1/3 of his pancreas to get his tumor out. He looked rough when I went to check on him and his parents in ICU the next day, but they claimed he was doing fine. His incision is completely across his abdomen - from one side to the other. Ugh! I really dislike the location of Christi's tumor because it has completely encircled her heart. I only hope during her surgery (first part of February if we stay on schedule) that it sort of just peels off during surgery because her heart cannot be removed. I also wonder how they're going to get to it. The biopsy was a 4-5 inch incision in her back where they separated the ribs to get in. I can't imagine how they're going to attack this one. I tell myself they have a plan and know what they're doing.

When we returned home, I picked up the paper and was reading to Shayne about the destructive tornados that went through our area the night before we left for her treatment. While we were playing in the basement because of the tornado warnings during that Nov. 10th storm, we had no idea that the path went just 1.5 miles north of our home and caused tremendous destruction just 3.5 miles to the west and to the east of us. We're very thankful that we're not dealing with that on top of all of this and we yet we feel so horrible for many, many families who lost their homes and others that are cleaning up the terrible mess. That night we got home from Children's, we were all upstairs doing our prayers together and Christi was first asked what she'd like to pray for and she responded, "Please take care of all of the families who were in the tornados." It was absolutely precious.

Our thanks to the kind folks in Attica who had a fundraiser for Christi when we were at the hospital. Since we were definitely "out of the loop" with what was going on, I have no idea of who to thank. While we were truly kept in the dark about what was going on, we are so humbled and appreciative beyond belief. Shayne continues to research and study everything he can get his hands on that applies to Neuroblastoma - stage 4 and we still feel it best to do a purging process. The oncologist (cancer doctors) are all supportive. When Shayne asked recently if there were ANY disadvantages to purging, the doctor responded, "cost". Shayne said back to him, "It doesn't matter what the cost. If it can help her, we will pursue it." (I knew as he said that that Attica was conducting a fundraiser for Christi that very night!) For purging, Christi's blood that is harvested in December, will be sent to LA. They own a patented process of purging cancer from blood cells. Despite some success, insurance companies look at it as clinical and will not pay. The beginning cost is $30,000. We feel it's vital that all of the cancerous cells be removed before being reinserted in her during her spring transplant. If she gets to remission and then relapses, she will only have a 5-8% chance of survival. This Neuroblastoma cancer comes back stronger and is resistant to chemo. the second time. We MUST insure that cancerous cells do not remain when they are transplanted back in her this spring. I totally agree with Shayne. It doesn't matter what the cost, we're going to find a way to do it!

She's doing very well with the new, healthful and sugar-free diet. No one at the hospital told us that sugar actually feeds tumors. I had no idea until I started getting into the reading. Doctor after doctor continues only to be concerned with the number of calories, not the nutritional value of those. We do not want her put on TPN (tube feeding) as most of the children are up there and as she will have to be during her transplant time when her body will not be able to digest anything. TPNs are very hard on the liver and we want to avoid it until we absolutely must. She is doing FABULOUS with her eating! Gooooooooo, Christi! She has been eating organic milk, bread, butter, yogurt, noodles, eggs, etc. We have made huge lifestyle changes to eliminate the "garbage" in her diet. (I'm doing my part by eating all of the unhealthy food left around here! What a Mom!!! hee heeee!) A normal person can process out the regular toxins from antibiotics, pesticides, herbicides etc. however with us putting major toxins in every month (chemo) Christi's system is maxed. Where they have lost the last three Neuroblastoma kids at Children's is right before transplant when their organs fail. They feel it is simply the cumulative effect of the chemotherapy and the high dose chemotherapy immediately prior to transplant. Our goal is to have her looking like a peach and strong as a bull going into transplant. We know the stronger she is going in, the better chance she is going to have in pulling through the transplant. It will definitely be our most trying and challenging stint yet. There are currently three children in BMT (not for neruoblastoma through). When their parents step out of those isolation rooms, you can just see how absolutely drained they are and I'm scared to ask them "How's she doing?". We are truly dreading those long, scary, lonely days.

Thanks to Aunt V and to her wonderful employer for allowing her to fly in from Phoenix to stay with little Shayla during this last round. You guys are awesome! THANK YOU, BNG!!!!

This Sunday will be my Grandma and Grandpa Falter's 65th wedding anniversary. Isn't that absolutely wonderful?!!! I am hoping to "come out of isolation" for the only time since running a couple of errands and to go to church with them. I know I'm not supposed to be around people, but I want to see them both very much. Earlier this summer, I thought my girls would sing to them one of their favorite songs from bible school - "This Little Light of Mine" now I know I'll make a quick solo trip instead on their joyous day! 65 years - wow!

What's up from here:
She's been through three rounds of chemo so far. Two more to go, then surgery in February to remove the tumor, then one more chemo round, then daily radiation treatments at St. James Hospital in Columbus, then stronger chemo and radiation two times per day for ten days (They will transport her in an ambulance with a nurse from Children's to St. James where the radiation is done.) immediately before her bone marrow transplant. The transplant will keep her in the hospital for eight weeks. (about April - May) and should be our most challenging time. That will be followed by 6 more rounds (months) of chemo. This is if we stay on schedule and everything goes as planned. So that's the "news" here. Hope you all are well! Thanks for all! Please keep the prayers coming. We love and miss you dearly!!

God bless you!

Christi's Recent Joke: Why do Pilgrims pants fall down? Because they were their buckles on their hats! (Thanks for sharing, Ashley and Shelby! She loves retelling this one!)