Journal Entry

Sunday morning, December 29, 2002

This entry finds us putting the final touches on our haphazard packing and our final kisses on our sweet little Shayla who we will desperately miss while we're gone. She's going to be in good hands and I hope her care givers remember to read her lots of books every day, not to permit sweets and to play lot of great classical and instrumental music for her. (I hope both of our Mothers realize this does not mean Elvis!!! Smile!!) I also hope they take lots of pictures of her with the disposable cameras I left. I'll still remain the "Kodak Mom" even though I won't be near her to capture these cherished moments and treasured memories that will be created in the period of time that we will be away from her. Finally, I hope that they call her SHAYLA and not "Christi's Sister". This is going to be terribly hard on Shayne and I and I'm sure Shayla will be experiencing a great sense of abandonment. I only hope one day she'll understand that her sister is dying of cancer and we're trying our best to bring her best friend and big sister home to play with her again. This has been so hard on Shayla and I'm sure it's only going to get worse. I've been preoccupied with so many other things that it broke my heart, yet didn't surprise me when one night this week when Shayla said, "I want my old Mommy back, not you!" I really have been a space cadet and haven't been down on the floor playing with her or dreaming up cool projects for us to experience together since September. I love you, Shayla. I'm so sorry this has happened. It's going to be terribly hard to be away from her, but we're happy to be able to leave a bit of our love back home with you all. You've been so good to us! Thank you for everything! May God wrap His loving arms around you and keep you all safe and happy.

It's going to be so hard leaving this great support system, you've all set up for us. I have not been to the store except for three quick runs since September and the list goes on and on. You've displayed tremendous love and unbelievable kindness. Even Uncle Jeffy. and friend Tim B. offered to drive our van out for us. Tim said, He'd have someone follow us to drive him back to Ohio. He said we could catch up on our sleep in the back while he drove. (Who does he think he's kidding?? Sleep with TIM driving??!! I've heard too many stories. I'd never be able to fall asleep fearing for our lives. Hee hee). Thanks, you guys! We are truly unworthy of our awesome friends!! We love you!

On Thursday, I returned back to the hospital down in Columbus with Christi. She needed a platelet transfusion (again) and they told me her platelets needed to be at least 50 in order to fly. They were down to 19. "Oh no!" I thought. "We're flying out in the morning to her new hospital!" I panicked. They reassured me that her platelets would be over 50 as soon as she had her transfusion. Whew! We will hate to leave the great care and plush, state-of-the-art facility of Children's Hospital and hope that we'll be able to do some of her treatments back there as well. They were great! What a good experience - given the grim circumstances. The people in Columbus were so nice and we feel like we're leaving old friends and family down there too. We'll miss you all at Children's! Thanks for everything!! Goodluck fellow parents and patients too! Best wishes to the dear volunteers , staff members and COSI friends. It's too hard to say goodbye, so with hopes of being able to come back to Columbus I'll say, "UNTIL WE MEET AGAIN!!" You're awesome!

Originally, we were to be in N.Y. on Monday, the 22nd, but Shayne said, "Let the five year old enjoy Christmas at her home." I'm so glad we did. It was most joyous and we have fantastic memories that will never be forgotten. We're glad she was able to play with her new toys before heading out again for what could be a very long time. We had a fantastic day! She also had a "snowball fight". Shayne and Shayla went outside in the snow and they threw snow at her standing behind the windows inside. She laughed and laughed as she ran back and forth between the windows trying to dodge their snowballs and saying, "You can't get me!". Shayne then brought in boxes filled with snow and put them in the bathtub so she could make a mini-snow man. What fun! It was a wonderful, white Christmas! Thank you! Happy Birthday, Jesus we all sang together that day.

She needed to be at Sloan (MSKCC) on Friday the 27th for a full day of tests and then was not needed there again until Monday morning, so thanks to the Christi Can Fund and to Brad at the Tiffin Airport flying us out there at their cost we were able to take a private plane on Friday and to return home for the weekend. While still not a cheap endeavor, it provided us with a great peace of mind. It also permitted us to spend a lot more time with Shayla, to scope out the hospital and the Ronald McDonald house so that we could better pack, allowed Shayla to fly on an airplane too and was our family's first real limo ride. So cool! It was a flawless trip. "Smooth as silk" I heard Shayne tell his Mom when we returned. The medical team and the hospital staff there were most impressive! Wow! Wow! Wow! We're going to be in GREAT hands! We also took a "nanny" along (hee hee). Wonderful Mrs. Smith went and tended to Shayla while we got Christi to her various appointments and tests. She also got me lost trying to get back to the hospital (Well, it was mutual I must admit! Smile!) and after we finally found the hospital again it was quite humorous! Perhaps we were not meant to leave Seneca County! (smile) I did tell her before we got lost, "I can't believe you and I have the whole day in N.Y.C. There's so much to do here, but we're stuck at a hospital!!!!" Caroline, we'll have to go back one day when this is all over and go to some awesome museums. Christi didn't have a very good day. She woke up a few hours before we were to fly out ill with fever and vomiting. She was sick two more times in the air and slept the majority of the day hunched over in her umbrella stroller. Finally coming home, over Youngstown, she woke up and when the pilot – beautiful inside and out, asked, "Want to help me fly?" She grinned a huge grin and asked, "Can I really?". I wanted to say, "Don't touch ANYTHING!!!!!!" But I refrained myself! You know how Christi loves numbers so she was fascinated the remaining 35 minutes home; asking what every dial was for and reporting back to us, "We're flying at 6,000 feet!" "Going 200 miles per hour!" Once on the ground, he turned the controls over to her and actually permitted her to steer us back in. She only made one bad jerk going around a corner and at that he laughed and said, "It's a little touchy, isn't it?" Definitely got our attention, Christi! You go, girl! In the air we were also teasing her to find a "fly - thru" McDonalds for dinner.

The social worker in New York is wonderful too and she told us it works better to bring a heavy stroller instead of pushing your child in a wheelchair. Thanks to "Grandma Donna", I borrowed an awesome jogging stroller. Shayne said, "You're going to be the hottest Mama in Central Park with that thing!" when he saw it. I had to chuckle knowing it's only going to be used during that eight block walk back and forth from the house to the hospital, but I'd love to one day jog in Central Park pushing Christi along! That would be awesome! She'd keep me going and get me back in shape cheering, "Faster Mommy! Don't stop." She's quite competitive and she'd never want Daddy catch up to us on his bike.

We pray for continual guidance from above as we now start a brand new ball game and we hope you'll continue to join us on the sidelines and in the stands with your loving prayers. A friend who knew I was having difficulty sleeping emailed me with this and I thought it was too cute not to share: "Before you go to bed at night give your troubles to God. He will be up all night anyway." I'm trying! I'm trying! It's just not easy!

My Mom was concerned that knowing us we'd try to sightsee and that Christi would be exposed to new germs in New York. I joking replied, "OK, OK, Mom! We won't take her to Times Square to watch the ball drop on New Years Eve!" ha ha ha! She didn't think it was as funny as I did. Of course we'll be careful, but as soon as she's permitted to see the Lion King, we're going to do it! She can play, "Circle of Life" on her keyboard now and she and Shayla love acting out that great movie. It's been one of their favorites for a very long time. She ought to have a good memory of this ordeal too.

Well, my mother said via telephone that it's "High Alert" in New York City right now. Someone must have tipped them off that a small town banker, part time kindergarten teacher and bald headed five year old were coming their way. Look out N.Y.C......... here we come!!!

God bless you,

Christi's Joke: (Sorry! She's not been feeling the best and hasn't let any great jokes rip lately. We're definitely seeing her the worst we've seen so far and know it's only going to get worse once treatment actually starts at Sloan. Dr. Kushner said he'd be giving her 3 ½ times the dosage of chemo she's been receiving and she's going to get really, really sick as a result. I hope she has some good days in there too.) Take care!

A recent Seneca East graduate wrote this poem about Christi and I'd like to share it in my journal this morning:

I am only five years old,
and just a little girl....
I play with barbies and like fairy tales,
and whimsical fairies that twirl.
I am only five years old,
and a meany wants to hurt me....
he stays inside to make me sick,
won't leave me or desert me.
I am only five years old,
and my head is sparse hair...
I visit the hospital often,
and live a life not fair.
I am only five years old,
so why did this happen to me....
I have many years of life left to live,
so please spare me lord I plea.
I am only five years old,
and a purpose I've become...
to teach each one to love another,
and cherish to and from.
You see I'm a five year old angel,
and I've come to you to say....
I'll fight this thing with all I've got,
and live to be old one day!