Journal Entry

Tuesday, March 16, 2004

"Hope is a waking dream."


No sooner had I sent my last journal entry to dear Webby to post, when plans began to change. Shayne continued to question how the tests could be done in only two days while I was just thrilled that it was all scheduled in record time. Well, as usual, he was right. It will take THREE days due to the fact that the MIBG Isotope is only made in one place in the country and it is only shipped in on designated days. Further discussions were then held with the awesome Oncs in Philly. After conveying our concerns that we want Christi to be off of treatment April 12th and April 18th due to some very special circumstances, compounded by the fact that we'd like Christi to start a possible new treatment on the 19th (only if warranted) and typically all testing needs to be conducted within a 30 day window prior to starting a new therapy, it was decided that testing will be postponed about two weeks. Soooooooooooooooo, all that boils down to this: Christi's tests/scans will be administered April 7th to the 9th. As soon as this was confirmed, I immediately notified Angel Flight as well as both of the pilots themselves (You know the angels on earth with real wings - airplane wings that is.) to cancel our flights. God bless them!!! God's people are amazing!

We continue to marvel and to thank God for Christi's remarkable ability to fight and shine like a true champion princess! Dr. Jasty (Toledo Mercy Children's Oncologist) who examined Christi last week was again very surprised this month that her blood counts are so good and that she looks and feels so very, very well! (What can I say? That's the fabulous Christi Crew Prayer Warriors for ya!) While I'm THRILLED that we live in times of modern medicine, I praise the true Healer and Creator of modern medicine for seeing Christi thus far. Regardless of the outcome, she's truly a miracle and I'm honored to even know her - much less get to read to her and to rub her back every night! I've been so blessed! This chick rocks! She is a hoot and keeps us going with her endless laughter, her captivating spirit and her beautiful smiles.

Earlier I had mentioned April 12th and a very special, once-in-a-lifetime event. Miss 6 year old Christi was invited to the WHITE HOUSE to participate in the traditional Egg Roll on the White House lawn!!! What a blessing!! What a thrill!!! And we are so thankful that little sister, Shayla - 5, was also included in this special invitation. (I know, I know - Shayla would MUCH rather chase President and Mrs. Bush's dog all over the White House lawn than roll an Easter egg across it, but.....................) I shall share some additional information about this incredible opportunity offered to our family in my next journal entry. We'd like to thank those great organizations involved who are responsible!!! And after "Christi Kicks Cancer" and experiences Washington, I think the girls may start their "Christi for Congress" AND "Shayla for Senate" campaigns. hee hee

For the past twelve days, we have been "Cat Sitting" Grandma Nee Nee's cat (Baby) while she is visiting with Aunt V in Phoenix. This has been great practice for "Christi's Pet Business". (Oh, I wish that idea would die.) One day Christi wrote this letter to Nee Nee and asked me to mail it to Phoenix:

Dear Nee Nee,

Baby hides under the bed and sleeps most of the day. She mostly comes out at night or when we aren't in the way. She has gotten to know me, Dad and Shayla (me and Dad mostly). The place she most likes to visit is Dad's dressing room. She is very nice to us when we try to pet her. She started to let us pet her now.

Love, Christi and Baby

It seems like each week there is something surprisingly new that moves me to tears. This week it was getting a wonderful email from our awesome former Heidelberg College exchange student - Mika of Japan. A few months ago she informed us that they were expecting a baby girl in May. Shayne jokingly responded that "Shayna" would be the perfect name for a baby girl. Well, this week Mika emailed me that they will name their precious first baby "Shayna". What a tear jerker! (Not only is it the female version of Shayne, but it's also Christi's middle name. It is Hebrew for "beautiful".) We look forward to the day when Katsu and Mika ship their beautiful teenage Shayna over to spend a semester or year with us here in America. (Mika laughs that we were so young when we hosted her that we weren't really like parents at all, but like fun siblings. She didn't want her parents to know that we were only a few years older than she. Well, don't worry Mika when beautiful Shayna comes to live with us, we will be older and much more strict too - hee hee! And we won't tell her that her Mother drank green beer with Shayne on Saint Patrick's Day! Congrats Mika and Katsu!! We love you and are so honored to know you!)

New to Christi's Clubhouse, but sadly not new to this yucky, stinking, horrendous, gut-wrenching disease is the incredible fighting Nick!!! Oh, you'd LOVE this great guy if you met him!! Check out his website. He's been fighting about 8 weeks longer than Christi. This may be hard to believe, with neuroblastoma being an extremely rare disease, but we actually have close mutual friends. Our friend and former classmate, Kaye and her husband, are also good friends with Nick's family. It was Kaye that actually introduced us to each other - over the Internet of course! When she told me that she was friends with another family that was fighting neuroblastoma, I thought she must have been confused - she wasn't! Shayne first met them at the neuroblastoma conference in Chicago last summer. When the Leslie's sought out NYC to have the wonderful and brilliant surgeon Dr. LaQualia perform Nick's surgery, I finally met them. Then back in Philly, where Nick also has twice endured MIBG treatments, we met again! We value their friendship and we pray for Nick's full and complete healing and invite you to do the same. Thank you!

We now have a date for Christi's blood drive!!!! The Thomas Team will be joining up with Community Hospice Care and hosting the blood drive on Friday, March 26th from 10:00 AM to 3:00 PM at 181 E. Perry Street, Tiffin, OH. Even though Christi hates to miss school, she fully understands the importance of giving back to others as so many have given so much to her. Therefore, she will be there offering cookies and pouring lemonade from about 11:00 AM to 3:00 PM. We hope all eligible donors consider coming out. For those who have never donated blood before, perhaps Christi will be their inspiration to get them started. (For anyone squeamish, Christi can give you some really good mental imagery tricks to try and she is a really good back rubber and hand holder too!! I know she'd be honored to help distract a grown up by reading a book to them or by telling some of her corny jokes.) Please consider giving the gift of life. We thank blood donors every where for helping our Christi who has endured more than 40 blood transfusions over the past 19 months. Blood supplies are always low and we know many little ones who have had to post pone their badly needed transfusions when blood products were not available. Thankfully, this never (yet) happened to Christi. Please mark Friday, March 26th on your calendar. Walk-ins are welcome, but it's best to call 419-447-4040 (Community Hospice Care) to make an appointment. We hope to see you then! Thank you very much!!

In closing, I'd again like to express our deepest Thomas Team thanks for the many friends, family members and strangers alike who continue to reach out to us, to lift us up in prayer and to help with countless items every week. We've had another wonderful, incredible, busy week and we couldn't be any happier! We have been so blessed! Thank you everyone!!!

With gratitude and appreciation,

Angela and the Thomas Team

Christi's Joke: "Pudding" (Family joke that only the four of us would understand!)

What's Next?

Blood Drive: Friday, March 26th (10:00 - 3:00) Call 419-447-4040 to set up an appointment. Walk-ins will be accepted. Address: 181 East Perry Street, Tiffin (Close to the library)

Scans/Tests: rescheduled now for April 7th through the 9th at Children's Hospital of Philadelphia.

We shall spend Easter in Washington DC. It is our intent and hope to attend church at the National Cathedral on Sunday morning. Shayne and I toured this most incredible church soon after we were married and marveled at its beauty. We've since traveled throughout Europe and have toured many breathtaking churches including our favorites: La Sagrada Familia in Barcelona, Spain and of course the Vatican - especially with its Sistine Chapel with its magnificent fresco of the Last Judgment by Michelangelo in Rome, yet Washington Cathedral remains very high upon our list of favorites in our unofficial "Masterpieces" category of tremendous, breathtaking architecture. If this works out, it shall be a blessing to get to return with our children to celebrate Easter Sunday there!

On Easter Monday, we shall participate in the traditional Easter Egg roll started by President and Mrs. Hays back in 1878 (YES, that would be a President from the great Buckeye State - which, like a fool, is the first thing I sputtered out when I was stunned and received the telephone invitation weeks ago.) Others have told me that this event is televised. I have no information about that; however, I will post it if I learn something.

Christi will make her Sacrament of First Holy Communion at St. Aloysius in Republic on Sunday, April 18th.

To recap her last scans, which were conducted the week of December 30th of 2003, the results indicated: NORMAL urine markers, NORMAL CT scan for CT (Smile.), NORMAL MIBG; however lethal disease (roughly 5-10%) remaining in the biopsies and aspirates of her bone marrow. Our prayer request is that her bone marrow is now free from cancer for the first time since her diagnosis on 9/11/02, yet we fully know the realities of this wicked beast and will happily accept hearing "stable disease" at this point of the game. Lord, please hear our prayers and please heal all of our cancer fighting little friends who are battling against insurmountable odds!