Journal Entry

Friday afternoon, July 25, 2003

"Come and pray to me and I will listen to you."

(Jeremiah 29:12)

God listened to your prayers, dear sweet friends!!!!!!!!!!!!!!! Thank you for praying for a successful surgery for one of God's precious children here alive on earth - Christi Thomas. God heard and answered our prayers!!! All went well and we are deeply indebted to all of you kind folks who prayed so hard for her yesterday and always! Thank you! We are very grateful!! Now I will back up to Tuesday, July 22nd and go forward from there with her update in this journal entry. Thanks again!! We've been so blessed by your kindness and great deeds!

On Tuesday, July 22nd, we returned our rental car and made our flight from Kona to Honolulu where we had about an hour to wait for our next flight to Minneapolis. I joked with Shayne earlier, "If they're oversold and need volunteers, Shayla and I are staying in Hawaii; you and Christi can head back for surgery." Little did we know that this would indeed be the case. Northwest Airlines was offering a travel voucher to take a later flight, so Shayla and I officially volunteered to stay while we sent Shayne and Christi off to get back to New York. Shayla and I (along with our $600 travel voucher) waited a few hours and then got to fly first class (Yipee!!) to Seattle and Minneapolis before returning to NYC eight hours later than the other two team members. While we had a few hours to kill at three different airports, we did a lot of walking, reading in bookstores and window shopping. When we walked past a coffee shop Shayla said, "Starbucks!" I said, "Wow! Shayla! You are reading!!" (She's been recently reading little words and signs and we've really been trying to praise her; it]' not easy being Christi's sister.) She said, "Mommy. I didn't read it. I've been there a hundred times with Daddy." (So funny! For Shayne's birthday in April my sister gave him the most fabulous gift - a gift card to Starbucks. When Christi was in treatment and would beg Shayne and Shayla to leave each day so that she could have a quiet room at Ronald they'd often go to Starbucks a couple of blocks from Ronald. I couldn't think of a better gift for my coffee connoisseur husband. Thanks, Tina!) I was also able to change the airport, so we flew right into LaGuardia, only 15 minutes away from Ronald, versus JFK which is about 45 minutes away. YES!!

Shayne and Christi landed, collected bags and took the wonderful Make a Wish limo waiting for us back to Ronald. (Little did they know that Katsu, Mika's husband, took the train clear out to JFK to meet Shayne and Christi, but somehow missed them.) Unfortunately, Christi got sick on the airplane in addition to losing her cookies in the limo. Shayne broke the news to Christi that she was possibly going to have surgery the next day and would be evaluated at the hospital that afternoon. She was extremely surprised and worry set in. They went to the hospital where Shayne met with Dr. LaQuaglia who explained what was planned for Christi's surgery on Thursday.

He said that it would be more extensive than her surgery in September (which left a 4-5 inch scar across her back). His plan was to enter the thoracic cavity through the back of the left rib cage using the previous incision site. Muscle and ribs would be separated and he would attempt to extract the entire tumor and lymph nodes it had spread to. Anesthesia will have inserted an epidural in her spine above the surgical site which will later be operated by a PCA pump. She will be intibated during the surgery. She would have a chest tube to drain fluid and blood from her lungs, a breathing tube down her throat to breathe for her, an internal monitor for blood pressure, heart rate and oxygen and a foley catheter until she's able to use the bathroom on her own. The life threatening surgery would be very risky. Shayne signed the dreaded consent forms. I packed the angel which hangs at Ronald for the hospital to have it hanging over her IV pole. (This angel was given to her by an older cancer patient and it has helped to heal other people. When Christi is healed she is to give it to someone else who needs it. We've been so blessed! Thanks, John!! We hope you're doing well now.)

So what do you do with a six year old who has seemingly already done it all on the night before a life threatening surgery? How about meet a friend from half way around the world, eat a steak at a New York deli, and then go to the top of one of her favorite places in New York - the Empire State Building? That's exactly what Christi and Shayne did Wednesday evening with our great Japanese friend Katsu -Mika's husband. Christi literally came skipping back into the room at Ronald about 11:00 PM and played with Shayla until 2:00 AM. (At 2:00 AM it was only 7 PM in Hawaii!) They were having a ball and we just let them play knowing what lie ahead for both of them. Since we took separate flights at the airport, Shayla asked me over and over, "Can I play with Christi when we both get back at Ronald? Yes!" I insisted each and every time she asked. Shayla absolutely adores Christi and loves when they play together. As I watched them play, I prayed that Christi would make it through surgery and that the girls would have a long lifetime to spend together enjoying each other's company.

In the morning, Christi and Shayla held hands all the way to drop Shayla off at preschool as they knew they wouldn't be able to see each other for a few days or more. (Due to Shayla's age, she's not permitted in the hospital to visit Chrisit. We can't exactly pass her off for an eleven year old. Hee hee!) On the way Christi asked, "Am I going to have Mommy or Daddy at the hospital?" I responded that she would have both of us because Shayla was spending the full day at preschool and then going home with her friend. Shayla said, "It's okay Christi. I'll have my teachers with me today so you can have Mommy and Daddy." I thought that was so precious of little Shayla to say that. She's amazing! At our scheduled time of 9:00 AM we arrived at the hospital. Christi's surgery was scheduled for 11:30 AM. She played in the playroom most of this time while Shayne and I didn't let her out of our sight for fear that someone would offer her a bite to eat, or that someone would trip on her IV cord; therefore, ripping her IV out. Everything was fine. Around noon, Christi crawled up in Shayne's lap, while I put my head on his shoulder. We all three slept for nearly an hour. (Jet lag again or as Christi calls it, "Jet Eye!") FINALLY, about 1:00 PM they came to get us. She rode on the stretcher all the way down to the operating room. We made small talk to keep her mind off of what was going to happen in the next room. Her last words to us were that she didn't want a mediport, she wanted another Broviac instead. What a blow! Then anesthesia put her to sleep and at 2:00 PM, they wheeled her into the operating room and Shayne and I broke down crying as the doors shut in front of us. "This is so unfair!" I sobbed into Shayne's chest as we hugged. Why????? Why must she suffer so much???!!!! She deserves a normal life like every other little girl. This is absolutely horrible!!!

What made this moment even more heartbreaking was that we learned in the morning that two of Christi's girlfriends and our friends' daughters recently were called home - never needing another treatment ever again. (God hath given to us eternal life, and this life is in his Son (I Jn. 5:11) While these beautiful angels are no longer in pain, their sweet parents and siblings forever will be having lost their princesses to neuroblastoma. Our thoughts are with their most wonderful parents who handled their daughters' diseases with the utmost grace and dignity. May God wrap His loving arms around them in the difficult months and years ahead. It was our pleasure getting to know and love them.

Shayne and I settled ourselves into the waiting room. Then I ran down the street to pick up the Make a Wish trip pictures (five rolls of film. I am the Kodak Queen!) that I dropped off at a drug store. I also went back to Ronald to collect a few forgotten things. Shayne and I passed the hours by putting our photos in an album, reminiscing, talking, sorting through the mail which arrived while we were gone and trying to read. A surgical communications woman, came around about 3:15 PM to report that the mediport went in without a hitch and they were now positioning her body to start the surgery to remove her tumor. I dreaded that she may appear back soon telling us that they opened her up and saw it had spread everywhere and they were closing her to say there was nothing else they could do, but that didn't happen. We waited a few more hours then Shayne took the call from across the room. He gave me a thumbs up, which I only interpreted was that she was alive. I could deal with anything else, I couldn't deal with losing her in the operating room. Shayne came back and said that they were closing her up and we could go to see her in thirty minutes. We didn't know anything about the surgery, but were happy she was alive and prepared ourselves for how bad she would look. (Something every parent always says is a shock when they first see their child after surgery. They never look the same as when they went in.)

They wheeled Christi upstairs to the Pediatric Observation Unit where she'll stay until she can go to a regular room. She was in pain and they were keeping us away, but I kept sticking my head in every time she cried saying, "Mommy is here!!" (Really ticking off the nurses I know, but I just HAD to let CHRISTI know I was there like I told her I would be even if they made us stay outside the door for a bit. I only cared what Christi thought.) FINALLY, two doctors came out and in passing told us it went well. As they starting to leave and I said, "So, did he get the tumor out?" (Things that were being said were all so positive. Shayne and I said to each other, "OK, who's going to drop the bomb and give us the bad news? Everyone is being too nice. It's always the highest paid person that has to deliver the bad news right?" The doctor responded, "Dr. LaQuaglia will be up as soon as his next surgery is over, but yes, he got it all out." PRAISE THE LORD! I was dying to see Christi so I charged into her room to hold her hand. She was in such pain and she yelled at the nurse, "I didn't want a mediport!!!!!" (She really loved her Broviac, but this is much less dangerous, she can swim and since she won't be going to transplant she doesn't need a Broviac. Really, this is much better and I'm certain she will come to favor it with time.)

The post surgical consult with Dr. L conveyed that the surgery went as expected. He removed a mass that was visibly active neuroblastoma. In his opinion, it was a full resection of the bulky mass, but of course it is assumed that microscopic disease was left behind which will be later treated with external beam radiation. Pathology will be obtained on the tumor, but will take some time to get back. It appears that the lung did not collapse which was a threat. Thank you to our loving Father and fabulous prayer warriors!!! Post operative she was breathing room air, not requiring oxygen. (Go, Christi!) She is receiving prophylactic antibiotics as well as fluids both of which will continue for days. Pain management seems to be effective with morphine; she only complains about the Foley catheter used to drain her bladder. The chest tube will stay in for 24 to 48 hours, but she should be up trying to walk in 24 hours and doing her breathing exercises every hour. I wanted to ask to see her tumor, but I didn't knowing they send everything to pathology. However, I would like to take a hammer to it and to shatter it like it has forever shattered our lives. (Danny Bowerman, age 5, sent us a hammer just for this purpose back in September.)

Recently, a friend asked me if it was hard for me to have others get good news when we receive bad news. I told her that there could never be enough good news given in the world of childhood cancer. This year instead of teaching twenty students I learned of about twenty students who died of cancer. I'm always THRILLED when one of our friends has a bit of good news to share. What is becoming hard for me however; is that now we are seeing the children come here for antibodies that were diagnosed around the same time as Christi or later. They whizzed through treatment and now their parents have sought out the 3F8 treatment only available at MSKCC to mop up the remaining disease that we all know continues to exists even when an NED status is reached with neuroblastoma. This is something Shayne and I were certain we would pursue. We never imagined that our daughter's cells would fail to respond to traditional treatment and she would be labeled as having a terminal cancer. While I am happy that these children are currently doing so well, it is very hard and makes me have more questions for the Lord wondering, "Why not Christi too? She's most deserving."

Currently, Christi rests mostly, but is alert when awake. Her first question to Shayne was, "Are you proud of me?" WOW! What a champ!! The doctors have all commented on her amazing strength. Her first complaint was that Shayne did not leave during surgery to get the Pokemon game that he promised her. This kid is amazing. He told her that he was worried about her and he just could not leave her at the hospital without him. She was able to drink a few sips of water which we felt was a very good sign.

Early Thursday morning, I read an email from my Aunt and Godmother, Marty. She and Jeff offered to drive out to stay with Shayla or to bring her back to Ohio until we could manage both girls again. I stewed about her email for nearly two hours before I responded back, "Yes. We'd love some help." I knew that was soooooooooooo much to ask of anyone. I hated to accept something so very generous and to really put them out like that, but I'm so glad I did.

Yesterday, Shayla spent the full day (not just the morning like usual) at preschool due to Christi's surgery. (Thank you, B.H.!) Then she went home with Veronica and her wonderful Mother who fed and entertained her until I came for her about 10:00 PM and found her fast asleep on the couch. (Thanks, Lisa!!) I wanted to spend some time with Shayla knowing it may be a while and to explain to her that she would be going to stay with Aunt Marty and Uncle Jeffy for a little while, but she was asleep. Shayne was also going to visit with her before she left, but again she was asleep so he stayed at Christi's bedside. Marty and Jeff pulled up out front of Ronald after a ten hour drive, loaded her things into their car and then drove straight through to Ohio where they safely arrived with our sweetheart, Shayla. Things will be so much easier without our littlest girl around; however, we're really going to miss her until we can be reunited - hopefully soon!! I know she'll be in the best of hands with Marty, my Mom, Shayne's Mom and any friends who take her for a day or two to help out.

Today found Christi with a fever of 39.2 Centigrade (about 102.4 F). Today's chest X-ray indicated that one of her lungs is a bit collapsed and that is probably the cause of her fever. She was forced to get out of bed and to walk to a chair to sit for a while. Despite much verbal resistance, she caved in and did as the nurse said. Shayne played games with her for about thirty minutes until she started falling asleep on his arm. She's been doing her hourly breathing exercises, but not without a good argument for the wonderful nurse who is not about to back down. (God love her!! She's awesome!!) At one point Christi asked, "Can I just make a deal with you?" one of Christi's many manipulative tricks, but the nurse calmly responded, "No. You can't." I later told this nurse how good she was with Christi in being so firm. If all continues to go well, tomorrow she should get out her breathing tube, her epidural and her Foley catheter. (Today they removed two IVs despite her resistance.) That will make her feel better. That may also earn her a ticket out of this unit and info a regular room. Her prophylactic antibiotics will continue to drip as well as the maintenance fluid will continue to drip into her mediport - oops! Did I just say THAT word? (She still wants a Broviac instead. smile) My only complaint with this hospital is the shared rooms so this private, HUGE, corner suite with picture windows on each side has been a fabulous blessing. This room is larger than some Manhattan apartments I'm sure. This special unit is also very private and extremely quiet. The nurses, as always, are fabulous and there are two chairs that fold back so Shayne and I can each stretch out at night. We've been so blessed!

With thanks, appreciation, love and gratitude,

Christi's Joke: No joking around here right now. She's in too much pain to act like her old self. The child life staff told her when she can walk all the way down to the playroom she can pick out a brand new toy to keep from their toy closet as an incentive, but I think it will be a long time before that can be accomplished. It's sllllllllllllllow going right now. Also, we're hopeful to be home with Shayla or to have her driven out to NYC as soon as possible. She's the best medicine - our little Shayla Rooster, another jokester in the family!!

What's Next? That's a GREAT question!! We sort of picked up from Dr. LaQuaglia that Dr. Kushner was recommending high dose MIBG treatment next, but we do not know for sure and that treatment is not our first choice. We will speak with him on Monday and express our desires for what we believe her next course of treatment should be - the continuation of some sort of antibody treatment. Now that the active tumor is no longer in her body sucking up the antibodies, let's see what the 3F8s can do on the rest of her bone marrow disease.) Our prayer request continues to be that Christi's bone marrow be forever rid of this nasty disease. "Trust ye in the Lord forever: for in the Lord is strength." (Isaiah 26:4)