Journal Entry


Easter Sunday April 20, 2003

He is risen!!
Alleluia!!

A happy and blessed Easter to you all!!! Easter gives us the reason to focus on life instead of death. Happy Easter!! What a joyous celebration it has been here this past week!!!

Last Friday could not have arrived any sooner! It was a wonderful feeling to be driving OUT of Manhattan!!!!!! While it's a tremendous city - it's definitely NOT home where we always long to be. Friday morning I had to take Christi to the hospital at 6:45 AM for her Broviac removal that did not happen on Thursday. (Let's not go there! Ok, Ok, what Mom would not have let her little girl drink just a wee bit of ice water because she was having horrible hives and asking for it even if it was just an hour prior to her scheduled surgery?!) Let's just say I learned my lesson as I literally slid down the wall and sat there sobbing as they told me they couldn't remove it until next week because I let her drink ice water and I knew we were not going to get to go home for many more days. Christi quickly came to my rescue saying to the medical team, "It wasn't Mom's fault! I asked for the ice water! I'm just a little girl that needs a drink of water." Well, in the end that fabulous hospital, know for its miracles and the terrific angels who work there, allowed Christi to get an early Friday morning Broviac removal scheduled so that we could FINALLY go home after four months despite the fact she has an idiot for a mother! I really don't think I could have waited until the next week. Perhaps those at the hospital couldn't stand for me to stay a few more days either! Hmmmmmmmmmmmmmmm. (Smile) Thank you, MSKCC angels!!

After the surgery, they came out and told me that they wanted to keep me out for a little while yet as she had some bleeding that just didn't want to stop. They were not sure why as her platelet count was decent. After a short time (which seemed like forever to me) they came out and said that there was a pressure dressing on it and I could go in and see her. What a fabulous site to see - NO BROVIAC!! YIPEEEEEE! Just a big patch over her chest which I was to remove in 24 hours! I wish this meant treatment was over, but it was still good to see her "tubey free". As soon as she was able, I fed her breakfast and then made her drink the dreaded beta glucan to get started with her daily treatment. Her motivation for getting it over as soon as possible was that she was heading home to see Buttercup as soon as her day's grueling session was over.

After the antibody treatment, I was getting her packed up when she noticed the sweet, eight year old in the other bed at the most difficult and painful part of her antibody treatment. (The pain builds up during the 1 1/2 hour infusion.) As Katie held the breathing tube up to her face, Christi said to me, "I just feel sorry for her, Mom. I know how that feels. It really hurts." Boy has this kid learned empathy!!! Again, inside I cursed this horrible disease for making Floridian Katie go through 18 rounds of chemo over the past nineteen months, two transplants and now 3F8 treatment, while outside I blew her a good-bye kiss and gave her a huge thumbs up! She and her gorgeous Mom were awesome roommates! May our loving Father provide Katie with a full and complete healing and give her family the strength and courage to continue marching.

Shayne made great time coming home Friday night and we were most thankful for smooth, event-free traveling. One stop was made at McDonald's for dinner. I pointed out to Christi that she had the same shirt on that she did when we drove out in December and she pointed out to me that we both had ice cream sundaes that night. I knew this was a hint that she wanted one, so I returned to the counter to order sundaes. As we ate our sundaes, I watched a gentleman at the counter drop his change into the Ronald McDonald House Charities box. I debated telling him thanks and explaining that because of the subsidized housing we were able to continue with Christi's treatment, but I couldn't and only managed to smile up at him as he passed by our table. I also wondered if he noticed Christi's shiny, bald head.

When Shayne shut off the van in our driveway, Christi woke up and said, "We're HOME? That was fast!" (Shayne and I almost burst out with laughter wondering if this was the same kid who asked nearly every half hour, "How much longer?" during the ten hour drive.) And it was absolutely precious to see her look up at the beautiful night sky and say, "Daddy! Look at the stars! Look the moon!" We had totally forgotten that we had not been able to see the stars since December due to the skyscrapers which surround us in New York. Children notice the simple, yet wonderful things in life!!

HOME is the greatest possible medicine! Ahhhhhhhhhhhhhhhhhh! How wonderful!!! We came home to find that Shayne's mom took fabulous care of our house during our time away. (Like there was any doubt!) It looked so beautiful!!! Shayne and I often joke about possibly having to sell the house so I said, "Let's put the FOR SALE sign up right now because the house will never look this good again!!!" It didn't last long - we started unloading our van and all of Joan's hard work soon looked like "The Thomas Team is back in town!" (Sorry, Joan!) Not only did Joan and Caroline stock the fridge, but Irv stocked the freezer full of fresh meat. Caroline brought over an awesome lunch on Saturday afternoon too! Like that wasn't enough, we soon discovered that recently Irv and Tim had done the mulching around the house, fixed the roof and even tilled the garden. (Shayne has been joking since he is unemployed that he's going to plant a HUGE garden this year so that he can afford to feed his family. I understand Irv said he could bring a tractor and till up the whole yard if Shayne really wanted a big garden! We'll pass, Irv!! hee hee!) THANKS, sweet friends!!!!

What a treat it has been to be at home. The kids have been able to run out the front door without getting hit by a taxi, we've been waking up hearing the birds chirp instead of the horns honk, I knew nearly every person at church both Sundays and I don't have to wash the dishes BEFORE I use them like at Ronald. Plus, we're surrounded by unlimited, free parking and inexpensive hotels are close by - if we need them! What a great change!! I love it here!!!!!!!!!!!!!!!!!!!!!!!!!!!!

For the most part, Christi has been pain free during our time home. Tears of devastation poured down our cheeks on Sunday and Monday nights as she was experiencing back pain. We were confident it was a sign of progressive disease. (Meaning that her disease is taking off and spreading.) It was all too familiar as it reminded us of exactly what we went through last April and May and again this mid-August when she had unexplained back and knee pain. This week she also complained about pain "behind her eye" which is where Neuroblastoma often lies. Ugh! Ugh! When she had the pain again the second night we emailed her wonderful oncologist and he emailed an advance alert to CHOP that "this sounds like it could be progressive disease" and again he was alerting them to the fact that she maybe coming to Philly for MiBG internal radiation treatment. (We've heard that they have a 3 month waiting list so he was giving them an advance alert. There is only one room for this special experimental treatment at CHOP. We, of course. pray that her tests will show that this is NOT progressive disease and that we don't need to play that final card which may or may not be effective.)

While we will know nothing until her test results are back (They will be conducted later on this week in New York) we do feel a bit better because that pain she had for those two days has not returned. (Praise to God, the most high!) We pray that this Phase One Experimental Study is working on her body. While only 5% of the kids who participate in a Phase One Clinical Study get any benefit from it whatsoever and some are even harmed by it, we still hope and pray that this study she is on will be the answer to our prayers of ridding her bone marrow of this nasty cancer. We've often wondered if we are on a major breakthrough for cancer treatment with this "never before attempted study" - or if this study will once again another failed attempt that proved successful in mice while not helping people. This disease is so horrible!!

Tuesday morning arrived and for the first time she was a bit hesitant about going to school. After she got the idea of picking yellow flowers to give to her teacher from our yard, she was thrilled once again. I stayed for only a couple minutes each of the three days, but it was long enough to realize that she has the great teacher and the sweetest children in her class! They were very polite and acted so happy to see her. There were many, "Hi Christi's!" and a few even had little presents for her. Their kindness blew me away. How absolutely precious!! (Christi's teacher informed her students last week that Christi was allowed to come to school for a little bit over her break. They wanted to have a party for her. I thought that was so sweet; however, Mrs. Rombach explained to them that Shayne and I wanted Christi to just have a normal experience with no bells, whistles, or hoopla.)

I also stuck my head in to say hello to the kindergarten students after I saw them looking out to me in the hallway. I was surprised that they seemed to know who I was after only having them as my precious kindergarten students for about six days of school. I told them how beautiful and how smart they were and that I loved them. Oh how I wish this year would have turned out differently and I could have been their teacher this year.

Christi had a joyous time at school. She was able to attend three mornings. Each day I left her she had a huge smile on her face inside her classroom. Her class was so kind in welcoming her. Her teacher sent me an email following her first morning back which provided us with a lot of comfort. She wrote:

Christi had a wonderful morning. She was smiling, laughing and really enjoying herself. She mixed with the other kids easily and was witty (as always!). What a doll! This is such a treat! The kids were kind and behaved very normal. They are just so excited for her to be here... when she gave an answer, they would clap (I don't think Christi noticed that it was out of the ordinary :-) Just too cute of them. :-)

While I've really missed the terrific colleagues I work with, I did not want to enter the school as I knew I couldn't handle it emotionally. I can never thank these folks enough for all that they've done for me. I didn't want to go in and have to look any of them in the eyes, knowing what kind and generous deeds they've done to help me and my family through this year. They are the best!! And it was so hard to watch the children playing on the playground at lunch, knowing Christi couldn't be with them so I found myself backing my van into the parking lot so I wouldn't have to see the precious, healthy children knowing that Christi and I weren't out on the playground with them.

On her final day there, many children gathered at the fence to shout their final good-byes to Christi. It about broke my heart. What sweethearts! They were going crazy! Then Christi shouted back to them waving, "It's not good-bye forever! I'll be back for second grade!" I nearly lost it and how I hope she is stable and really can come back for second grade. The odds are definitely against that, but God does wondrous deeds daily!

This week provided us with the time to catch up on house hold chores, doctors appointments and time to deal with the January 1st flood in our basement. Following the flood, boxes were stacked in our garage so we did a lot of sorting and organizing this week. This week we also had Christi's blood drawn here in town and overnighted it to New York as required by MSKCC.

We also had a lot of fun. I mean A LOT OF FUN!!!! We had so many visitors, caught up with the neighbors and went to visit both of the girls' great-grandmas. We went swimming at a friend's home, planted flowers, and Christi visited her preschool teachers from last year. She wanted to go to the library, visited "Daddy's bank", went on an egg hunt, visited with her cousins and went canoeing. Lezle brought us dinner one evening. Christi had her very first sleep over with her longtime friend, Donna and was able to have Aunt Marty and Uncle Jeff babysit her. (The list goes on! I think it was the best week of my life!!!! While I dread leaving here again soon I will keep the memories close when the going gets tough and dream about Christi getting better and coming back to Ohio for good one day!!)

A real treat for me was that I was able to meet Christi's awesome Webmaster for the first time!!!! Eric and his beautiful wife drove down from Michigan to meet Christi. He is an angel on earth! What a nice guy!! We enjoyed our time with them and talked a lot about the goodness of people. Eric asked us what was absolutely the best thing that happened to us. Shayne put his arm around Eric and said, "It's your web site for Christi, Dude!" Eric had no idea he was setting himself up, but it has been so true. What a comfort he's provided for my family and friends to be able to check on the site and actually see pictures of Christi taken just the day before and know she's doing okay. The web site has saved us from making countless phone calls and has kept Christi from overhearing news that her little ears need to be protected from. Shayne kept insisting that I'd love the Cooks and he was right! They are delightful and I immediately felt like I've known them all of my life. I found Eric to be just as gorgeous, talented, funny, athletic and sweet as Shayne told me he was. Thanks, Eric and Alicia!! We love you and you have blessed us so richly! Words cannot express our thanks and gratitude! God's great blessings to you!!

On Saturday night as we returned home from enjoying a night out with Eric and Alicia, we stopped at a gas station. I noticed a "Christi Thomas Benefit" flyer posted on the window. "There's Christi's picture!" I shouted as it caught me off guard. Come to find out, some friends of Shayne's mother have organized a great event to help us with our costs of fighting the cancer monster. They are having an auction and a poker run. Lots of other great things are planned. They even have a web site which Eric has already linked to Christi's site. The web site for the benefit is http://www.geocities.com/friendsofchristi (Thank you!!!)

Our time at home is rapidly ending, but the memories that were made this week will last a lifetime! I feel refreshed and ready to slap my helmet back on and to march back into combat. (Come to think of it - I'll just carry my helmet as my hair was finally fixed this week. After paying $27.50 for little Shayla's haircut in New York I knew I wasn't stepping into a salon in NYC and paying for an adult hair cut! Thanks, Cindy!)

Another neuroblastoma fighter is now linked into "Christi's Clubhouse" thanks to the great "Webby". He's the brave NB fighter - Michael!!! Michael is a relapse SURVIVOR that had to go to CHOP for MiBG therapy which proved to be successful for him. (This is what Christi may have to do as her "final card to play" if this Phase One Trial doesn't work for her.) We met his family in January when he was in transplant and Christi was inpatient in New York. Michael's web site is http://www.caringbridge.org/page/friendsformichael. (They also have a four year old son, Anthony, that Shayla LOVES playing with at Ronald and at the hospital.)

Happy Birthday to my most wonderful husband, Shayne who turned 35 yesterday!!! He just keeps saying, "I'm closer to 50 than 18." I think that's wonderful, Shayne! We love you, honey!!

This afternoon I reflect and remember the real reason for Easter and the promise it has for all of us. Have a wonderful, blessed week! Enjoy! My next journal entry will be from New York.

In His love,
Angela

Christi's Joke: "What do bunnies eat?" Anything that turns-up! (turnips)

What's Next?

Testing this week will include: bone marrows - 4 aspirates and 2 biopsies, MiBG scan and a CT scan. Our prayer requests are for shiny, clean scans. (smile) I know it's a long-shot, but I believe in miracles!! Testing results will determine if we continue with another round of the 3F8/monocolonal antibodies with Beta Glucan per this Phase One Trial, if she has surgery, or if she needs MiBG internal radiation at CHOP, Univ. of Michigan or San Francisco. Of course we pray for clean scans, but fully understand that she could on the other hand actually show disease progression. We also pray for strength to deal with whatever the cards we are dealt. Thanks for everything our dear sweet friends and strangers helping us through each day of this war.

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