Journal Entry

Saturday, October 23, 2004

~ The Power of Prayer ~
No Ocean can hold it back,
No river can overtake it,
No whirlwind can go faster,
No army can defeat it,
No law can stop it,
No distance can slow it,
No disease can cripple it,
No force on earth is more powerful or effective,
Than the power of prayer.
(Author unknown)

Last Wednesday, the 13th, Christi had blood drawn out of her arm at the hospital. Again, her counts were again not what we had wanted, but it just reminds me that it's not up to us; it's up to Him. They were: 9.0 hgb., 3.3 white, 111 platelets with an ANC of 1580. Since Christi had been having vomiting the past four days and had what she referred to as a "bathroom problem" feeling the urge to urinate, but not being able to do so; therefore, I shared this information with Dr. Jasty - her wonderful Toledo Mercy oncologist who helps us back at home. Beautiful Dr. Jasty showed me how her bladder was distended and that it was indeed full. She was also sure to let Christi know that if she didn't go on her own then in a day or so she'd need to go to the emergency room to have her urine drained via a catheter. Reluctantly, Christi agreed to go and gave me a HUGE output for the urine collection. (Definitely something that would have "grossed me out" before becoming a mother! Thanks, Dr. Jasty!! Hee hee!) After her ABT (oral chemo) ended, she was soon feeling better in the next days to come and did not have any more episodes. My heart went out to Shayla who would try to look the other way as not to get sick herself reminding me again and again that she is so precious dealing with all of the "cancer issues" as a wonderful, wonderful sibling. I love you, sweet Shayla!

Over the weekend Christi complained of back pain to Shayne while sitting on his lap playing her computer programs. That was incredibly disheartening. His first thought was neuropathy due to the oral chemo – a big side effect of this ABT, while my first thought was new tumor all along her spine. How I hate this wicked beast of a disease! I know that you can have clean scans and just weeks later have fully blown head to toe disease and be sent home with nothing left to try. This cancer is ruthless!!! Isaiah 41:10: "Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you. Yes, I will help you. I will uphold you with My righteous right hand."

Theresa's birthday party was a HUGE hit with Christi and Shayla totally enjoyed Theresa's big sister Amanda staying with us and entertaining her in our home as well last Friday! (Quite frankly, I think Amanda was happy to bail from the excited little third grade girls staying over at her house! Smile.) What a joyous and glorious event! I think perhaps we rejoice in the normal events in life like birthday parties it is because we have learned how very fragile and precious human life is - especially a child's. Christi also attended her piano lesson at the School of Music and went to Heidelberg College's mini little cheerleader camp with her friends before going on to yet another little sweetie's birthday party at the bowling alley on Saturday. We have been so blessed! Thank you, Lord! When the fear and worry start to kick in, I remind myself that I never really thought we'd have two more years with Christi and what a blessing it has been!! May God richly bless us with two more. (Please, Lord.)

While Christi and Shayla were at their college cheer event I ran to the library to get some more books on tape since I've been listening to them as I drive down to OSU each week for my classes. I popped over to say hello to one of the sweet librarians I am so fond of and she said, "Let me show you what just arrived." Knowing that she's shared other great books with me in the past, I had no idea what she may come out of her office with and what a surprise to see Mrs. Harner pull out "Alex and the Amazing Lemonade Stand" written by the Scotts. I was so touched and yet so ashamed that I didn't first think to buy that book to donate to the public library in addition to Christi's school library! I know how the public libraries budgets have taken such drastic funding cuts. Regardless, I'm absolutely THRILLED that it will be on the shelves for the children of Seneca County to enjoy!

All too soon (and yet not soon enough, really) Wednesday afternoon arrived and Shayne came to school to pick up Christi. They came up to my room so that I could give her a little treatie (bag of snacks) and a final hug before her trip. My English students were taking a test so we quietly said goodbye quickly in the back of the room. Then I went to the window where I watched Christi and the "World's Greatest Dad, Husband and Friend" walk out and get into my van for the long drive (and all that would go with it) ahead. Then one of my 7th graders asked, "Is she leaving you for the hospital or something? Boy, I could never leave my kid like that." (Ah, nothing like a 12 year old stabbing your heart... like I wasn't experiencing enough guilt on my own.) Knowing that every minute spent with early adolescents is a time of ideal learning opportunity I told him, "I think you can do a lot more than you think you can when you really have to. And she'll be fine with her Daddy; don't worry about Christi." (Easier said than done, I'd been nauseous for days with great worry about this trip.) Of course this led into good natured joking back and forth with my students with items such as, "They couldn't find a substitute teacher who could teach English as well as nor one who would assign so much homework." (I love my job and students! They're awesome!)

"Becky and the Boys" kindly called and invited Shayla and I over for a wonderful dinner on Wednesday night which helped to take my mind off of the situation. Shayne called me there to let me know that they were 200 miles into the 500 mile trip and so far all was well even though the fog and drizzle were heavy. Apparently, they stopped to visit with Tom at Uncle Dudley's Restaurant in Willard where Tom treated them to a wonderful (as always)meal. Shayne (Nothing like mozzarella sticks, garlic bread and spaghetti before a nice long drive and before you have to go without eating due to the medical procedures.) And he enjoyed their wonderful company as much as he did their great food!

Shayne said that he was driving behind a large truck and didn't realize that the I80 / I76 split was happening so soon because of the truck and the fog. Quickly he said, "Hold on, Christi!" as he immediately exited to Interstate 76 and was off of the road for a tiny bit. He said as soon as he had the van under control he glanced back at our little "roller coaster fanatic" and she had her hands up in the air like she was riding on a roller coaster and then she said in a deep voice before bursting into giggles, "Buckle up. You'll be back to the station in ten hours. Enjoy your ride at Cedar Point." Oh, what would we do without this little bubbly delight?! With her Daddy's awesome sense of humor – she is a hoot!! "Terrible driving conditions" (dense fog and rain) is how he summed up the journey and they arrived at the Sheraton not too far from the hospital after midnight. Christi enjoyed the fact that there were five pillows on their bed. (Sadly, I wondered if she'd notice the homeless people who are often outside of the gates of the Ronald House without any pillows at all when they moved into the House the next day.

The week was extremely difficult emotionally. Shayne and Christi drove the nine plus hour trip out to CHOP on Wednesday while I tried my best to keep a smile on my face and my mind busy with my lessons and my students - all the while knowing why they left, it wasn't a pleasure trip even though the always good natured Christi was so excited about staying at the Ronald House and passing out all of the "things" she made to give out to the "sick kids" at the hospital. (She's so amazing!) Shayla and I would cuddle up together every night and watch a video before bed, but I just couldn't concentrate on any "Care Bear" or "Magic School Bus" video she selected. My mind was on one thing only - neuroblastoma, neuroblastoma inside my precious baby girl. Is the cancer worse? Are there new spots? How fast will it take over? Oh, God, please let it miraculous be forever rid from Christi's body somehow, I prayed (and begged) countless times throughout the week. I prayed for their safe travels, their well being in the city far away from home, their ability to get a room at the Ronald McDonald House, and quite frankly that Christi would just plain wake up and not be killed by the anesthesia during her bone marrow biopsies where they poke six inch needle canisters into her hips to extract the marrow samples. Oh, how I hate this nasty dragon and all she's had to endure as a result!! We've said repeatedly, "You can beat it back for a while, but you just can't kill it." God, how I want to kill it so that it can no longer ever invade another child or teenager's body.

Her last scans and tests back in August, when I flew out with her and when we attended Alex's wake and also learned of Simon's death, indicated that her disease was at the lowest level ever: minimal bone marrow involvement, CT and MIBG clean. Except for wiping away tears due to Alexandra and Simon's deaths, we couldn't have received better news on that trip. (We later learned that her cellular level was dreadfully low and that her dosage of chemo needed to be lowered, so it was reduced for these past two rounds with the hope of not needing to have any precious stem cells infused back into her again.)

Thursday arrived and I called Shayne on my lunch break knowing where they would most likely be at CHOP. (I expected her to still be "under" and Shayne sitting beside waiting and praying for her to wake up soon.) Surprised was I when I called and there had been a problem with her CBC and they had to draw more blood to test it again. By now of course Christi was really hungry and the stress was really high. After school I learned that there was just a three hour delay and it all turned out fine. She woke up terribly rough from the procedure (again - which is the most grueling event for a parent) but by evening when they called from the Ronald House, where they were able to get a room, she had made friends was playing and doing fine. I think all of the narcotics had worn off. She sounded great on the phone. Her blood counts, with the exception of her platelets, were all a bit improved from 8 days earlier. (9.8 Hgb, 3.6 white, 101 platelets with an ANC of 1,764).

On Friday during my lunch break, with perspiration I could actually feel beading up on my forehead and with a heart beating so hard I think my shirt was moving, I called Shayne knowing that Christi should have just finished her MIBG scan at CHOP. While I dialed, I clutched the "worry angel stone" - a gift which I carried in my pocket this week. Shayne told me that the scan looked fine to him and that he didn't see anything at all. Whew! Knowing fully he's not a radiologist, I didn't put a lot of stock in that, but it was a tremendous sign of relief that most likely there were not any new spots of cancer in her body yet.

At the end of the school day, I called Shayne again and he had just left his meeting with Dr. Maris, who was very short on time due to a new diagnosis and other items. Dr. Maris hadn't had a chance to speak with the radiologist yet, but the MIBG looked clean to him too. The bone marrows, the real indicator of what's going on here, again showed visible disease - most likely not any better, nor any worse either. So that's the preliminary news. I will submit a (brief, I promise!!) update with all of the official test results- including the cellular level of her bone marrow, as soon as we receive them. (It should be about a week.)

She started her next round of ABT - 751 yesterday afternoon. Praise God! The plan is to continue this for two more rounds and then to test/scan again in mid-December to see if she can continue on with this "miracle drug". I knew they had a very long night ahead of them as they were stopping for a bit of fun and then driving all through the night which they did and they arrived home at 4:00 AM. Shayne's beat, but I think he looks dashing and as always it's a tremendous relief to have them home. Thank you, Lord!

Shayla and I proceeded directly from school to Columbus where the sweetest young women, Traci (Oh, I mean Harriett from COSI) met us at our hotel and so kindly entertained Shayla while I went off to my teachers' meeting down the street. Shayla has been missing the Explorers in a bad way so this worked out delightfully well. (You may remember they were the sweet folks who had the INCREDIBLE surprise birthday party for Christi at Chuck E Cheese before our flight to Philly in May, they also drove out to NYC, came up for Christi's first Holy communion and made visits when she was treated in Children's Hospital. God's people are good.) Traci was as wonderful as always and although our time together was entirely too short I considered it a rich blessing! Thank you, dear Traci!

Returning home this morning, I learned of a new little doll who just gained her angel wings and I ask for your prayers for comfort for their family. Shelby Prescott, in "Christi's Clubhouse" endured the MIBG treatment just a bit before Christi did. Her sweet father was so helpful in helping us to prepare our family for what would happen during the treatment at this time one year ago. Shelby touched countless lives and will forever live on in all who knew and loved her. May God give them continued strength throughout the difficult days they'll forever face without their precious young daughter here on earth with them.

Shayne and I will be attending, and invite you to consider attending, F.A.C.T.'s benefit dinner show and auction featuring Toledo Channel 11's Jerry Anderson on Friday, November 5th at the Pioneer Mill. Dinner begins at 7:30. FACT stands for Financial Assistance for Cancer Treatment and they assist Seneca County residents fighting cancer by helping with a limited amount of mileage costs when traveling to and from treatment. We do know how expensive that can be Shayne discovered that the tolls alone went up 40% this trip!! Christi is working on "something" (yet to be decided I think) to donate to the silent auction benefit. You may obtain tickets by contacting the Pioneer Mill or Coppus Motors.

REMINDER: If you would like to order a "2005 Courageous Kids Calendar" to support oncology research at Children's Hospital of Philadelphia which features Christi as the February artist, please do so. To print your own order form, click here.

Some of you may remember our friends from Cleveland that we first met in NYC when the girls shared a hospital room together; they became friends and that we recently visited with in Cleveland. Their brave fighting princess Olivia desperately needs your prayers too. It is with heavy heart that I ask all of Christi's sweet Prayer Partners, to please lift up this most wonderful little girl in prayer. Things appear bleak at best. We know and love the "Crowley Crew" and ask for you to join us in praying for some much needed divine intervention for Olivia. My special "Holy Mary" candle is burning brightly for her bone marrow donor to step up immediately and for the experimental treatment to be the answer He gives to keep her here on earth with the most wonderful parents anyone could ever be blessed to have raise and love them. Mark 18:27: "What is impossible from a human perspective is possible with God."

My awesome Mother recently watched the girls for me when I had school and they didn't. As always the girls had a wonderful day with Grandma and Paw Paw. Recently Mom sent me this email, "Found a nice surprise in the sunroom today. Christi wrote a note to Pa Pa Joe and I saying she likes to stay with us and she will miss us when she has to leave. Such a sweetie."

Thank you for checking in and for your continued loving support and help during this long journey. We'd never make it without the sweet friends, strangers and family members who continue to get us through each and every day. You've helped Christi face the grueling treatments with more grace, dignity and cheerfulness than ever thought possible!! You've made a positive difference and we will forever been indebted to all who have helped us along the way!! We will FOREVER be filled with gratitude and appreciation!! Thanks for keeping Christi and all of our family in your hearts and prayers.

In His love,

What's next? She'll continue this sixth round of ABT - 751, oral experimental chemo, for the next 19 days straight and she'll continue to have her blood counts checked at the hospital. I'll update with the official test results as soon as we have them and it will be a very short entry which I anticipate being available in about 5 days.