Journal Entry


Thursday, October 30, 2003

May I have the envelope please.........................

TEST RESULTS ARE IN!!! (now: Plan "B"!)

This was emailed in late last night from Philadelphia by Shayne:

Christi was excited to get going to Philly. It was another great adventure for her. She was looking forward to seeing Great Grandma Dixie and seeing her new room at the Ronald McDonald House. As we pulled into Crestline 40 minutes into the trip she said, "Dad I don't feel so well. Can I have a bag?" As I quickly pulled into the McDonalds on route 30 she blew her lunch seemingly wrenching from her toes. It was one of those moments when you just knew that she was a very sick child. She recovered very quickly and she said, "I'm hungry." So we went in and she order a lot of food and we decided to take some to Grandma. We had a great visit with Granny who gave her a very cute bunny that stayed with her all week (The bunny got named Daisy.) Travel was long, slow, rainy, and busy. After consulting with the Ronald McDonald House we got a hotel room instead because of our late arrival due to slow travel and Christi's vomiting. Christi was disappointed to not get to see her Ronald room, but enjoyed the overnight at a hotel. We were the first ones in clinic on Monday and were greeted by the very efficient staff at CHOP. Shayne was excited to meet a beautiful young cancer survivor whose mother had been following Christi's web site. (The Mother also emailed Angela which was comforting for Angela at home to get real info. from another Mom and then learning that Christi really was doing okay with just Daddy.) When it was time for Christi to go back and get her mediport accessed she skipped down the hall to the nurses' room and was accessed before dad even got into the room. Ok, dad lingered in conversation with the parent that he had just met. Christi was then prepped for the her bone marrow test. I asked the doc to please pull a good sample which she did. (Praise the Lord!) Christi was her usual spunky self with the team who I think really enjoyed her antics. When she was recovering form the anesthesia in the day bed area the famous Alex Scott of Alex's Lemonade Stand surprised her with a gift bag full of wonderful stuff. Most loved was the label maker. Christi went on to labeled everything. Herself, her dad, the label maker, each and every shelf in th RMH, the cabinets in child life, etc. Since she is not allowed to eat before marrow testing as she gets put under, as soon as she got awake she said, "Lets eat!" So we went to the best hospital cafeteria in the world and she ate a giant feast. Fruit, greens, tuna, cheese, pizza, and milk.

That afternoon we checked in the Ronald McDonald House and she just loved it. She loved exploring, learning the rules, checking out the various living areas, and most of all the volunteers from the Ivy League school U Penn. Each night we have been treated to gourmet buffets fixed by local companies that rival the best thanksgiving dinners. After dinner she is entertained by rotating groups of college students from Penn. When they have to leave she asks, "Will I see you next week?" If these fine folks are representative of the next generation then our country has a lot to look forward to.

She has been fascinated with a giant ball moving watchamallcallit in the Atrium of the hospital. Each day we have visited it several times. Once she was playing along with it kind of lost in its complexity and I said, "Christi it is time to go." She looked me sort of puzzled and said, "Oh, I forgot we were in a hospital." Bravo to the architects who designed the area and to the donors who made it possible.

The next day was more tests and Christi handled them all like a champ. We had picked up some gifts for the great 7 year old Alex Scott who was doing chemo this week so we carried them all day with us. (Also, thanks to her Mother, Liz who also emailed Angela to let her know from another Mother that Christi really is doing fine with just Daddy.) On one of our long waits we had to raid the gift bag we put together for Alex because we had exhausted our entertainment supplies for the day. Alex did not seem to mind she got a half used set of wickie sticks. (What a sweetie!) Christi has such fun in the recreation area with a new friend she made that she did not want to leave. Finally, I prevailed that we had to leave and that we were going to go to the "Please Touch Museum". It was a real pleasure to see her enjoy a this fun children's museum in Philly. She was particularly delighted with acting out the entire story "Where the Wild Things Are." After two hours of intense play at the "Please Touch Museum" we returned to Ronald for more fun with the U Penn volunteers until 9pm - quiet time at Ronald.

Finally on Wednesday it was "showtime". The MIBG scan. Tension was thick! Angela said she had tears three times during her day at school knowing this all important scan was today and knowing the horror of what next week would be and that it would probably show new disease now from head to toe. Angela wrote her weekly newsletter informing her parents that Friday would be her very last day and she told me she was crushed about leaving her students for probably the remainder of the school year. While Angela often feels that she can interpret the scan as it is being done (it shows on the computer monitor) I can only make out white blobs that make up a shadow image of our six year old daughter. It is sort of like a poor quality image of the computer generated portrait that they used to sell at fairs. I always refuse to speculate until I have the final report. We watched Sponge Bob and laughed hysterically with the nuclear medicine folks and again Christi said, "I was having so much fun I forgot what we were doing." Thank you, Mr. Square pants.

After another huge feeding frenzy Christi did an EKG to test heart function then went into the dark room for her echocardiogram. As I sat mesmerized by the image of Christi's pumping heart on the screen there was a knock on the door. The doctor jokingly said, "Were you expecting someone?" No, but in walked the beautiful and brilliant Dr. Shusterman of the oncology team. She said, "I have some results. Can we talk?" For those who have walked this walk you know what kind of anticipation there is the moment before the docs give you the news. It is a gut wrenching moment where time stands still and you refuse to breathe. You peer intently at the doctor hoping that they betray some of what they are about to tell you. Doctor Shusterman was a real pro though she gave up nothing. We walked into the hall and she said " I have mostly good news-with a twist." A TWIST??!! I must say if there is a world record for the number of "twists" a guy can think up in a split second I now own that record. She said the marrow disease is still present, but that the mibg scan showed no disease. OH!! I knew instantly that no MIBG positive scan - no MIBG therapy! My mind raced passed the good news and right to the heart of the matter which was, "Now what do we do?" In an instant I went from knowing what we were going to do for the next month to not knowing what we were going to do for the next 24 hours. Her recommendation was to scan again the next day to see if there was any late uptake of MIBG and discuss our options from there. ughhhhhhhhhhhhh

Shayne

From Angela: I'll post when we have the official test results, very soon. We know not to get too excited with pre-lim results, but it's a HUGE step forward to finally get a negative MIBG. I remember in December when her scans were still lighting up "like a Christmas tree" and then little by little the disease has been disappearing with almost each treatment. We pray that today's MIBG scan is also negative in that she shows no MIBG uptake and she is officially kicked off of this Phase One study by not qualifying for it!!!! The battle is far, far from over, the bone marrow disease exists and that's wicked, but if we don't have to subject our baby to internal radiation and we got the same results - Yipeeee!! Praise the Lord!! Thank you all for your prayers and for giving us a very good turn around of events. I'll post when I know more, very soon. Shayla and I have really, really missed the other half of our family this week. Thanks to Betty Jane Preschool for keeping her so busy while I'm teaching. And if Shayne is loading up everything today from the Ronald McDonald House where we were planning to stay for 8 weeks, I'm sure he's doing it with a smile on his face!!! I did pack the van full - never dreaming we'd get good news and get to come right back home five days later, but that may indeed be the case! I'm singing His praises!!! I called my Supt. and Principal and told them to cancel my sub that was to start on Monday - I'm coming back!!!!!!! AHHHHHHHHHHH!!! And in addition to singing His praises I'm singing Happy Birthday today to the world's greatest sister - MINE!!! (And to one of Christi's two Godmothers and her namesake!! Now, Tina how much older are you now than me?? hmmmmm! I think A LOT!!! Love you!!!!) Thanks to you all! I'll update the site soon with the official reports and a possible new plan of attack to kick this beast's B*TT!!! It's of course going to be a long road, but I feel a huge rock has been lifted off of our shoulders not having to go through the life-threatening experimental treatment, Praise God! Gooooooooooo, Christi! Thank YOU our fabulous Christi Crew Prayer Warriors!!!!!!!

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