Journal Entry

Wednesday late afternoon, November 19, 2003

Mother

To one who bears the sweetest name,
and adds luster to the same,
long life to her, for there's no other.
who takes the place of my dear Mother.

Today is my birthday and before Christi's treatment she presented me with the most beautiful (OK, downright tacky, but I love it!) sand dollar gift which had the above poem printed on it. Shayla gave me an equally gaudy gift, but I loved it too!! Shayne took the girls out to buy my birthday presents which was a total surprise to me. I should have been suspicious when he suggested I go take an afternoon nap while he and the girls go find ice cream or something!! They created quite a little party for me complete with a chocolate cake, balloons and fancy plates. What a hoot!! (Oh, I mean treat!) Christi read the poem to me; it was fabulous!! Thank you, family!! And happy birthday to my Mother today too!!!!!!!! I love you more than words could ever say and wish we could be together! This now makes two years in a row I haven't been able to go out to eat with my Mom on our birthdays - something that's become a tradition over the years. I'll say it again, "Hopefully next year, Mom!" And today I find I reflect back on one year ago today when my sweet, sweet colleagues stood in my front yard during our period of isolation wearing party hats and singing "Happy Birthday". What a hoot! What fond memories!!! We've been so very blessed!! Thank you everyone!

Monday afternoon Christi and Shayne walked to the hospital since she'd soon be cooped up for a while. Together they strolled and explored the Ivy League campus of the University of Pennsylvania. When they arrived to meet me at the hospital, Christi sat down beside me and said, "I think I may go to college at Penn." With a fit of giggles erupting I responded with, "How old are you?!" "I'm six!!!" she proudly exclaimed. "When can I go to college?" (Turns out she and Daddy found the student union - complete with a sushi bar, pizza place and a juice bar! Well, sign me up, I'm going too!)

While waiting for Christi to arrive at the hospital, I was able to visit a bit with Alex and Liz Scott. I wanted to hear about the Good Housekeeping banquet to honor Alex that they were leaving for on Tuesday. But while I kneeled down and talked with Alex, I realized she didn't care that she was going to be getting an award along with Jessica Lynch and Goldie Hawn; but what Alex was excited about was going to the newly opened American Girls Store in NYC. So we looked through her catalog and talked about our favorite American Girls! So cute!! Congrats, Alex on all you do for others while you continue to battle this beast yourself. Her story can be found on page 68 of this month's Good Housekeeping Magazine as her lemonade stand continues to raise money for pediatric cancer research. "When life gives you lemons, make lemonade!" What a sweetie! (Alex's web site is in Christi's Clubhouse.)

Yesterday was a pretty rough day for Christi. She had to fast due to the surgery which wasn't scheduled until 10:30. She didn't just wake up hungry following the surgery, but very, very sore. They gave her morphine which really helped. We were surprised that the surgery process took so very long. For over three hours Shayne and I sat out on a bench hoping and praying that all was going well. As they wheeled Christi off into surgery I said under my breath, "Wake up happy, honey" because last time she was a bear and told everyone in recovery what she thought of that cathedar. Then Shayne quickly chimed back to me with "Just wake up, Christi" which put a lot into perspective for me. The doctors removed her port, put in a new one on the other side so now she has a new scar "AKA badge of honor and courage upon her chest" and they put in the cathedar so that her "radioactive pee" would go straight into the lead collection container. Prior to the surgery we were meeting with a doctor and after talking with Shayne for a while he asked, "Are you a physician?" Shayne chuckled and said, "No, just an amateur." (An amateur with absolutely everything invested! Go, Dr. Dad!)

The MIBG was flown in (They only make it in one place in the country) thawed, tested and prepared on Tuesday and her infusion started at 3:00 PM. For the two hours we had to vacate her room, she watched Pete's Dragon a DVD my friend Robin sent me. (Thanks!) I also left on her bedside table wrapped in plastic a "grow in hours" crystal garden that my kindergarten students were recently fascinated with when I purchased one for them and used it in my science unit. The first thing she spelled to me through the window, using her sign language paper, was "Come in!!!" While trying not to double over with laughter and while maintaining my serious, concerned and loving Mother face I signed back, "I can't!!!" and blew her a kiss. Before she went in I told her that she wouldn't be alone and she responded with. "I know. Jesus is always with me." and I added so are your guardian angels. During my gazes through the window I said many prayers and visualized her guardian angels hovering over her. And I kept an eye peeled for hints of pink, purple or glittery spots - knowing her stylish girl friends who've earned their wings are sporting Angel wings of beautiful colors!

They actually increased her high dosage radiation level by roughly 15% for this infusion. Because she gained a wee bit of weight and because she processed it out so quickly two weeks ago they determined this to be best. All I know is that the whachamagiggerlevel on the computer monitor two weeks ago went as high as "44" and yesterday's actually hit a level of "63". "7" is the safe level to be discharged to the public; however, we received some bad news about that.

Because this is a Phase I study and it's written into the study, these patients need to be measured every eight hours for 96 hours. It was explained to us that it was a mistake that we got to go home so soon last time, but a "good mistake" I told the doctor who seemed surprised when I told her that we went home and went back to school because CT felt so well. We're hopeful to be out of here soon and we've requested that we be permitted to leave and stay at Ronald. We've told them that we will bring Christi back to be measured every 8 hours, but we don't want to pay for an expensive hospital room if it's truly not needed and if it's safe for her to leave.

However, now it's Wednesday afternoon and her radiation levels are still too high to be discharged. This morning's official read was 16.7 - very different from the 6.7 last time which earned us a ticket out of here! It's probably for a variety of reasons: radiation left over in her body from two weeks ago and the increased dosage. She also hasn't had as much diarreaha or vomiting this trip.

As soon as the infusion process started yesterday and I vacated the room, I received most emotional news!!! I learned that the radiology safety guys from HUP had been to Christi's web site and they learned about how very, very special Christi's blanket was that was bagged up as biohazard waste two weeks ago. (This special blanket was made by a sweet friend I've never met. She made the beautiful quilt for her unborn baby. Sadly, her baby was needed in heaven so she was never able to enjoy this gift of love her Mommy stitched for her here on earth. The Mother had prayed that someday a child would need this special blanket so she mailed it to Christi to use for her MIBG treatment - even though she knew it would have to be discarded. She thought it would provide some comfort and it did!) Perhaps too much, as Christi fell in love with this blanket and tried to take it home with her, but was not permitted to do so and she bravely and slowly returned it to her radioactive room. Anyway, after learning the special story of this blanket these unbelievable heroes went digging through the trash (Well, I'm exactly sure what happened because my eyes were so filled with tears as the Ph.D. stood there telling me the story holding the blanket all wrapped in plastic) but they retrieved Christi's blanket so that she could have it during this treatment too!!!!!!) Praise God!!! And thank you to our new best friends over at HUP!!!!!! Yep - the Dumpster Divers!!!!! Since these are the great guys that officially measure Christi's radiation levels and that determines our "ticket out of here" we've been trying to bribe them with dinners and other goodies, but they won't give in and let us wrap their radiation monitors with duct tape nor practice saying the magic number "7"! (hee hee!) Thanks, HUP!

"Best in the US" is CHOP's slogan as they are continually ranked as a top US Children's hospital and now we know why! It's not because of the state-of-the-art facility which I call being at the country club, nor the dynamic research or lifesaving procedures it's because of the tremendous staff with hearts of gold! Thank you, CHOP & HUP employees!!!!!!!!!!!!!!!! Again this stay we find the nurses and all we've worked with to be highly efficient and extremely professional. Despite being in the hospital, it has been a very good experience. Christi is starting to get bored with all of this but hopefully it won't be much longer. Today after I purchased my lunch in the cafeteria and was heading toward the hallway to go back to Christi's room I noticed the lunch room full of men and women wearing scrubs. I wanted to shout, "May I have your attention please?! You don't know me, but thanks for all you do! You're working your bum bums off to save my kid's life. It may not happen, but not for a lack of effort on your part." Then of course the rational person inside of me just turned and walked to the hallway thinking someone would stand up and carry me off to the funny farm, but I wish I could let all nurses know how awesome the work they do is!! At every hospital we've now treated at (This makes FOUR!) the nurses have been fantastic, absolutely wonderful!

Shayla arrived home safe with Aunt Marty and now is with my friend Becky. My teacher friend, Caroline, will take her to ballet class on Friday and keep her for the weekend. As always, we're not exactly sure what we're doing as Christi has to be tested again on Tuesday, but we're trying to figure out when Shayne will drive home and get Shayla - along with some more clothes for me. Christi's blood counts are dropping, but her spirit continues to soar. We've been very blessed. Thanks for all!

Warmly,
Angela

P.S. Christi recently received a package in the mail at Ronald. When she opened it up she was thrilled to see that one of the items inside was a journal/notebook. "A diary!!" she exclaimed. Quickly she crawled on top of the bed and started writing. Later Mommy took a peek inside. This is what six year old Christi wrote on 11/17/03:

My dream is to be a professional artist. I hope my dream comes true. I also have another dream to be a professional writer with commas and all! And when I am an artist I will have a pallet and the artist cap. I think about it all the time, even at school! Everywhere I go I think about it! It is just my dream and that is all. I wonder if my dream will come true! Christine S. Thomas

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