Journal Entry


Early Sunday morning, November 2, 2003

"Don't give up! I believe in you all! A person's a person, no matter how small! And you very small persons will not have to die if you make yourselves heard! So come on, now and TRY!"

From Dr. Seuss's Horton Hears a Who

The good news was short lived, sadly I report that while at 24 hours following the MIBG isotope injection her scan was negative, at 48 hours it was deemed positive as there was faint uptake in both femurs (thigh bones). It immediately became questionable as to whether Christi would even qualify for the study with only slight uptake in two places. Shayne and Christi left straight from the hospital for the nine hour drive home leaving everything at Ronald. With the stress and all involved Shayne said if he would have went back to Ronald, they never would have driven home to get me. (Smile) Thanks to amazing technology, the doctor in charge of this Phase One study located in San Francisco was consulted as she would make the final call regarding Christi's eligibility after reviewing her scans. Shayne and Christi made the nine hour drive home and arrived in the middle of the night. I heard them laughing as they came in, but was too tired to get out of bed even though I hadn't seen them for nearly six days. I woke up for school and dropped Shayla off at preschool only knowing that sometime on Friday the decision and recommendation would be made. When I arrived home late Friday afternoon I learned that because she still has 5% bone marrow involvement (which doesn't sound like much - especially after it was 98% at diagnosis, but it still is A LOT of circulating disease, which hasn't responded to any "bone marrow blaster" so far - and hopefully its "stable" and not ready to set up shop anytime soon, but I've learned a lot about this beast so I definitely don't trust it!) and because she is officially MIBG positive, plans were back on to start with this Phase One Double High Dose MIBG infusion with stem cell rescue on Monday morning. Ugh!

While I am disappointed, the results could have been a lot worse. Here's the rest of her results: Bilateral biopsies positive at about 5% disease, bone marrow aspirates: one positive, one negative, no lesions noted on the CT scan (Praise to brilliant surgeon Dr. LaQualia who like he said did get it all out!!), HVA/VMA (urine markers) are normal, blood counts were good HGB-11.5, white 4.1, platelets-195, ANC 2200. (Ah, the next treatment will take care of those awesome blood count numbers though! We're going to start seeing some dreadfully low numbers and many transfusions happening very soon.) What an efficient and professional hospital to have so quickly given us all of the test results. We remember thinking how speedy MSKCC in NYC was, but CHOP is unbelievable as they nearly immediately had the entire work up ready to share!! Wow!!

Daddy took Christi tardy to school on Friday, as I let her sleep in, but she had a great last day of school. She even received a bouquet of beautiful flowers from one of her friends which brought tears to my eyes. I took my class to the Toledo Art Museum through a nearly $4,000 grant I wrote, received and re-received for my kindergarten classroom so my mind was very busy on Friday and I didn't worry too much about Christi, what was next for treatment, or the fact that it was my very last day with my precious students. I also got myself in the proper mindset when I met with my sub after school so I didn't get emotional with her like I did on Wednesday when she came in. And I'm positive my students will all love her and she will do a fabulous job with them as she's scheduled to sub for me until the end of the 2nd nine weeks. How I hate to leave my kindergartners in some one else's hands though!

After school the girls had ballet classes and then I took Christi and a friend from school out for pizza and then trick-or-treating to a few teachers' homes since Christi missed the real trick or treat night due to being at the hospital. (Thank you, friends!!) She really enjoyed having a friend sleep over at our house for the very first time too.

After her little friend left on Saturday, she wanted to go see the Wagners and to take them some of her trick-or-treat candy. Not knowing if they were even home or not, I loaded her up and off we went. Jodi was showing Christi the cats when in pulled State Representative Wagner. He was all dressed up having just had breakfast with Attorney General Jim Petro in Fostoria, but Jeff took off his tie and helped Christi climb all the way to the very top of the hay mount; she loved it!

Saturday was to be Christi's first confession and we prepared in the afternoon. (She even listed MY sins that SHE came up with on a little chart she created to help her determine what to say to the priest. Thanks, Christi, but I had enough in my own mind.) Well, as the afternoon progressed, she became petrified. Yes, the "Know No Fear, Christi!" was scared and as we were driving to church, she fell asleep after saying, "Help me think of what to tell the priest." We sat in church with her fast sleep on my lap. We couldn't wake her and I wondered if she wasn't feeling well as this was very odd. Father Joe come over to see if she was ready and then said we could try after mass. After mass she was still sleeping so we told Father we were hoping to be back home by Christmas and maybe she would try it then. I wish she could just make this Sacrament with her religion class as I think it would be much, much easier. She had memorized all of her prayers, but when it came time to telling Father what she had done wrong, it was simply too much for Christi. We went to a great party at the Bowermans after church and it was TREMENDOUS to see so many of our former classmates and friends that we have not seen since before Christi's diagnosis. God's people are awesome!! I can't believe how many people are still praying for a full and complete healing for Christi, yet I'm confident that that is the reason she's made it this far.

Soon Shayne's Mother will arrive and take care of Shayla. (I can't believe we're abandoning her again, but we have no other choice. She's not permitted to be with us while Christi is emitting radiation and immediately after.) My Mom will care for her this week and Shayne is planning to drive home and to get Shayla as soon as it's safe - probably this weekend. For the second hit of internal radiation, my Aunt Marty and Uncle Jeff will drive out to Philly to collect Shayla and then she'll stay that week with my long time friend, Becky - until Shayne can drive back and get her again. It's just gut-wretching leaving one child to take care of the other. Parent's shouldn't have to make these kinds of decisions and arrangements. I hate this disease!!

We will keep in touch as the treatment progresses. Thank for your support. And congratulations to our friends on their sweet new baby. Christi was thrilled she was able to stop and see a four day old baby. When I told the new Grandma how much I loved the little guy's name after church, she told me that it sounded like he belonged in our family, how true!! Welcome to the world, Shayden!! And thanks to the awesome "Webby" who somehow has kept the website up to date despite the fact that he spent a week away for work and recently moved into his brand new home - which does not have a high speed Internet connection. Ugh! Congratulations to the awesome Cooks!! (We're planning to visit when we return home in December.) God's great blessings to you all!!

With love, thanks and gratitude,
Angela

PS: Reminder: If you are interested, "Christi's Flower" note cards can be ordered by clicking here. (Or click on her home page under "Newsflash".) Proceeds benefit the National Childhood Cancer Foundation - raising money for something Christi and so many other children desperately needed - RESEARCH to find a real cure for their cancer.

Christi's Joke: Sorry, no time to ask Christi for a joke and I wasn't around her at all this week as she was testing with just Daddy. Everything is moving at a rapid speed. Next time I'll have plenty of Christi Jokes as she'll be in isolation and I'll be posted outside her room standing behind a lead shield trying to help her pass the time.

What's Next? We're leaving as soon as Shayne's Mom arrives and moves in this morning. We'll spend the night at Ronald and in the morning, Christi will be put under to get the dreaded cathedar inserted at her new hospital - CHOP. (No one has told her about this little uncomfortable thing yet. Hmmm.) On Tuesday morning, she'll be injected with the radioactive isotope to hopefully seek out the nasty cancer cells in her bone marrow and to destroy them. (Die, cancer cells, die!!!!!) She will be in total isolation, but I've packed plenty of toys and have been practicing my aim at tossing them over the shield for her to play with. Anything she touches will be destroyed due to being made radioactive. She'll be discharged back to Ronald as soon as she's emitting a safe level of radiation. She'll have about 5 days off before being readmitted and having this process repeated a second time. Her stem cells will be given back to her on December 2nd to hopefully restart her life. She'll be the 3rd in the USA to ever attempt this dosage level. (They're only trying three kids.) We don't know anything about the first two. Go, Christi! We love you sweetheart! Thank you to our fabulous prayer warriors and thank you for supporting Shayne and I in the very tough treatment decisions we have made for our little princess!!

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