Journal Entry

Wednesday night, April 21, 2004

"You give the time of your lives."
Happy National Volunteer Day to all of the
fabulous volunteers who have touched our lives!

Still reminiscing about Christi receiving the Sacrament of Holy Communion and the lovely reception that followed, Monday arrived and we were glad to be back into a routine. After school, Christi and I drove to Columbus where Shayne's sweet, sweet cousin - Corrine, watched Christi at their home while I attended class.

Tuesday was the OEA Educator's Lobby Day at the State Capital so Christi joined about 50 other Principals and Teachers from Northwestern Ohio and she quietly colored and read while we lobbied our elected officials regarding our concerns in education.

Next, it was on to the Columbus airport to catch our flight to Philly. On the flight, Christi napped while I read from one of the five textbooks I have for my latest class. Upon our arrival, we were greeted by two delightful US Airways employees - Wendy and Denise. They had a darling US Airways bear for Christi, treated us to dinner and even provided a generous lift to the Ronald McDonald House!! Thank you!!

This morning we rode the Ronald shuttle van to CHOP. Blood samples were drawn from her mediport. Her blood counts came back: 4.4 white, 10.8 hgb., and platelets 125 with an ANC of 2,683 - all below normal, yet GREAT counts considering what she's been through! Other tests included an EKG and an ECHO both to test her heart function and to establish a baseline for future EKG and ECHOs following this new chemo attempt. She also completed a pegboard test for fine motor skills. (Her fine motor skills could show a decrease in function while on these drugs. While just a minor, annoying inconvenience I am concerned that the "Little Artist" will be disappointed and confused if her art work suffers. One of her levels (blood clotting function) came back unacceptable which would disqualify her from participating in this new Phase I study. After an exam and meeting with Dr. Suzi (who sadly is relocating in July due to her upcoming marriage) more blood was drawn - this time from her arm. While waiting for these new blood results we passed some time with Amazing Alex Scott and her incredible Mother, Liz. (We are looking forward to having an "Alex Lemonade Stand" in Tiffin this summer - raising money for pediatric cancer research - one sip at a time!)

What Shayne and I have had reconfirmed to us again with this new clinical trial is to READ THE FINE PRINT!! We were told to expect to spend five days at the hospital so we thought we had to come back for Monday and Tuesday blood tests as well. We also thought she needed to be hospitalized as that is how it was presented to us. When we actually read through the protocol carefully last Friday night, we discovered that those things were optional. While driving to Columbus, the ABT 751 Research Nurse called me and I expressed my concern that all of those additional blood draws were listed as "optional" in the protocol. Now we fully believe in the value and need for research; however, Christi does not like being in the hospital, she's feeling fabulous and she doesn't want to miss two days of school next week - nor do I want to go to the expense of driving or flying back for this. Therefore, while not easy, I declined consent today and refused to sign the papers for the optional tests.

Finally, it was very late in the afternoon and time to take the first dose of her new oral chemo: ABT - 751. For 21 days she will swallow 2 pills (125 mg.). She will have seven days off and then repeat the cycle again - if her tests/scans show that her disease has not gotten any worse. (There is no limit to how many cycles can be taken. The longest is a boy who has taken it for 30 months / 30 cycles and who thankfully has had stable disease with it.)

I set up her scans/tests for Thursday, May 13th and Friday, May 14th after a bit of an "issue" with Christi who said, "I'm NOT going to be at the hospital for my 7th birthday on the 12th, am I?" after Dr. Suzi suggested coming in on the 11th and testing the 12th to the 14th. (Oh, no, of course not Christi. We won't be here on your birthday. Instead we're going to run around like absolute madmen on two days trying to get to your six tests in less than 48 hours - oh, boy! Can't wait for that joy! Hee hee!)

Thankfully, the side effects are all reversible once the drugs are discontinued. The side effects "may" include: nerve pain - especially hands and feet, constipation, fatigue, and waking up 3-6 times during the night. All things we can definitely live with!

Christi took the pills like a champ and for the next hour the study nurse carefully monitored her blood pressure. We sing His praise that all was fine and that we were sent back to Ronald. Christi will be the 29th child enrolled on this study. It is only available at CHOP and at the NCI (located in DC). While no one can say anything official, fifty percent of the children have had their disease progress and have been removed from this study and roughly fifty percent have remained stable. One child was cleaned of their bone marrow disease - which of course is our prayer request. We pray that this is the instrument God has chosen to cure Christi and all of these brave children fighting against insurmountable odds - even though so far it has cured no one.

In closing, this week is National Volunteer Week. I can't think of a better place to celebrate volunteerism than being at a Ronald McDonald House where the awesome volunteers lovingly roll up their sleeves and give freely of themselves for others.

In His love,

Christi's Comment: "I wonder if it's still called 'Standing Guard' when you're sitting down?" hee hee!

What's Next? Well, thankfully, our only appointment tomorrow is with US Airways for our 5:30 flight back to the great Buckeye State!! Since we just learned this afternoon that Christi really didn't require an overnight stay and that the many additional blood draws were actually optional, it appears that we have a FREE DAY tomorrow until we head to the airport about 4:00PM.

Thank you, friends for checking in! God's great blessings to you and yours!!

Angela Thomas