Journal Entry

Monday afternoon, July 28, 2003

Heaven's Special Child
A meeting was held quite far from Earth,
It's time again for another birth.
Said the angels to the Lord above,
"This child will need much love."
"So let's be careful where she's sent
We want her life to be content.
Please, Lord, find parents who...
Will do a special job for you.
They will not realize right away
The leading role they've been asked to play
But with this child sent from above,
Comes a stronger faith and a richer love.
And soon they'll know the privilege given
In caring for this gift from Heaven...
Their precious charge, so meek and mild,
Is surely Heaven's Special Child."
(author unknown to me)

Christi most definitely is a very special child and a fabulous gift from God!! And let's not forget a determined one too!! The very next night following her surgery she was determined to walk all the way down to the playroom (two times - not close to the Pediatric Observation Unit either). The child life staff offered her a new toy and she selected the board game Clue Junior which we'd been playing in the playroom. Now she has her own game I'm sure we'll play a lot at Ronald. Christi was also determined to eat a large meal. She ate some: spaghetti and meatballs, peanut butter and jelly on crackers, yogurt, salami, grapes, strawberries and Ritz bits and kept it all down. Heaven most certainly issued us a special child!! Like I've said to the girls many, many times before Christi was ever diagnosed, "I'm so glad God picked me to be your Mommy! How did I get to be so lucky?" The girls are our world. We've been richly blessed.

That Friday night we called and talked with Shayla whom we were already missing terribly, staying at my Aunt's home, and she was having a ball. Of course with so many animals at their country home and all of the extra attention, who would not be happy and content?!! Only Aunt Marty would allow our "flower picking Shayla" to pick every flower out of her flower garden and to turn them into lei's for a Hawaiian Party. What a hoot! It was great to hear her happy chatter and know she was being so well cared for by her very special Godmother. Even though things continued to be stressful for Shayne and I with monitors and beepers going off and Christi developing a fever, talking with Shayla made us feel much better. Thanks, Shayla! We'll all be together very soon.

On Saturday (two days after her surgery) we woke up to a group of doctors surrounding Christi one of whom told us that they were taking a sample of the contents of her chest tube because the color had changed and there is a concern that she was excreting a fatty substance from her lymphatic system into the chest tube which remained inserted in her chest cavity to help it drain. It is possible that lymphatic system was compromised during surgery and is leaking. Sometimes it heals itself while other times a surgical solution is required. We also learned that a lung was partially collapsed and they were also culturing her blood and urine due to the fever which continued. What a scary and unpleasant way to wake up!! I'm glad we were both able to stay with her. Thanks, Marty!!

That afternoon she wanted to go to the playroom for a while before coming back to take a very long nap. They removed her foley catheter and she was happy to now be able to use the rest room. Due to the situation that had developed with the drainage of her chest tube, they left the epidural in explaining that it's better for pain management than attempting oral medications. Having had an epidural with Christi's delivery, I was all for leaving that wonderful invention along with the morphine through in which dripped, remain in her back yet another day. While not entirely comfortable and still with fever, she did great through the day and made the best of everything. We're so proud of the way she's fighting this nasty beast. Go, Christi!!

They also informed us that her diet had been changed to a low fat diet because of how the gut and lymphatic system process fats. I simply must explain the most awesome food service program they have here at MSKCC. It's all like room service. You pick up the phone in your room, order what you'd like for your child and it's then delivered. They have a regular children's menu (which is surprising because this is not a children's hospital, just one floor of a huge hospital) which includes the items kids love and eat such as: pizza, chicken tenders, mac and cheese, spaghetti, fish sticks, peanut butter and jelly, mozzarella sticks, hamburgers, ice cream sundaes, brownies, etc. in addition to the healthy choices. Also, because Christi is such a great eater she is allowed to also order from the adult menu which lists things such as steak, salmon, salads of mixed greens, and many other delicious and nutritious items you'd typically see with fine dining. Currently, she's not eating a lot, but doing well with her low-fat diet choices.

Thrilled we were that Katsu, Mika's husband, who was visiting this fabulous city stopped by to visit with us Saturday night. What a kind gentleman!!!! We really regret that Christi was taken so quickly into surgery that we were not able to escort Katsu around the city to sight see like we had fully intended. Of course he's so intelligent and very travel savvy so he was able to get around like a pro on his own. Katsu is a Pharmacist. We asked him what he thought of the hospital. He responded that the equipment was state of the art and the facility very nice. Shayne explained that the new pediatric floor (which will include both a brand new day hospital as well as a new inpatient hospital) is scheduled to open in October. Finally, Anne Marie - Christi's awesome teacher will have a small classroom instead of a closet in which to teach. And speaking of the fabulous Anne Marie, she called us at Ronald to check on Christi both the night before and the day of her surgery. She's such a special and fabulous woman! We love and adore her!!

About the same time that Katsu arrived, Christi said, "What's all gooey?" I lifted up her gown to discover that her dressing was leaking around her chest tube site. I called for our awesome nurse who quickly changed her dressing and called the doctor. (Can you believe that the entire four and a half days we've been here we've had the same exact THREE nurses only?!!!!! We love consistency!!! It's very comforting.) Another chest Xray for the day was again conducted. Then when the team arrived, they of course removed her dressing for the second time in hours causing many tears to stream down Christi's cheeks due to the pain of the sticky removal before applying yet a third dressing for the day. The fluid continued to leak throughout the night as well as drip into its proper tube. We couldn't wait until morning when they would hopefully take it out.

Sunday we visited Christi's web site and discovered that not only had Eric posted all of our Make a Wish Trip pictures (Eric, I really can't believe there were 97, but I know you're right! So sorry!) and my journal entries to keep everyone up-to-date, but I went to the From the Webmaster Section and saw what a wonderful thing Eric and his wonderful wife did recently to raise money for cancer. So cool! Finally, congratulations to Eric and Alicia on their sixth wedding anniversary! They are a beautiful couple - inside and out!

Christi's tube continued to partially leak throughout the night. She didn't like all of the dressing changes that they woke her up to conduct. (Who likes having the stickiest of sticky tapes ripped off your skin especially in the middle of the night? No one I know!) She didn't eat very well due to upset stomach, but we were able to get some foods in. Because of the increased infection risk with leaving an epidural in longer than three days, it was removed and now morphine is available through her mediport instead for her pain control. She was able to walk down to the playroom where she sat with myself and some volunteers and played many board games for nearly three hours before getting too tired. During this time a lot of the fluid collected into her chest tube. Glad we were that this was draining from her lungs as the Xray indicated. This "complication" is a "normal" situation following surgery we've been told. (Whatever that means!) We're hoping that it soon remedies itself and that she's moved to a regular room or sent back to Ronald instead of having to endure yet another surgery. ugh! We're thrilled that her fever broke yesterday.

Sunday night, much to our delight, in walked Katsu so we spent a couple of hours with him Sunday evening. Interesting it was when Katsu told Christi that the movie she was watching (Milo and Otis) was filmed in Hokkaido and is called "The Cat Story" in Japan! So cool!!! We highly recommended to Katsu that he go to one of our family's favorite and most exciting places in NYC tomorrow - the Metropolitan Museum of Art. Katsu enjoyed the Guggenheim and Shayne explained to him that the Guggenheim took two hours to see it all, well to see it all at the Met would take two lifetimes!! After Katsu was excited about going and planned his route, we then remembered that the Met was closed on Mondays. (oops!) Hopefully, he'll be back in NYC again with Mika and they can enjoy visiting this incredible museum together.

Sunday evening / early Monday morning was terrible. Christi was so uncomfortable with a lot of pain. Glad that both Shayne and I were able to be with her, it certainly took two of us to make it work. I do not know how single parents could ever do this. My heart goes out to them. Finally about 5:00 AM with Christi in a parent chair and I trying to sleep on the hospital floor, she drifted off to sleep. This stay has been grueling!

Monday morning, I sat up on the floor and talked with the doctors about 6:30 AM, then I fell back asleep not exactly sure what they or I even said. At 9:30 they came to wheel Christi away for her chest Xray (again). I was so tired waiting on the 2nd floor with her, I sat on the floor and put my head on my knees while Christi slept in the wheelchair. I wondered what people walking by thought of us and had to chuckle knowing we looked absolutely horrible! Arriving back in the room, I got into Christi's bed since she again wanted the parent char and Christi and I didn't wake up until noon. Katsu then arrived on his way to the airport now leaving the city and he had been down to the Pokemon Center at Rockefeller Center and purchased a HUGE pillow Pikachu for Christi. Oh how she loves it! (Thanks, Katsu!!)

Much to my surprise on Monday afternoon when Christi was again sleeping in her bed after just a short time in the playroom playing some games with me, I heard an "Angela?" at the door. Assuming it was Harrison's sweet Mom, Gina - who left a note earlier because we were sound asleep, I was extremely surprised to see it was Caroline and Nintza our friends from the Met out in the hallway!! Can you believe people's kindness?! I was shocked that they would come all the way over to the East side to check on Christi. I think they were disappointed that she was sleeping, but they definitely understood. Their timing couldn't have been any more perfect. I told them that 30 minutes earlier we had just received the bad news that Christi was going to have to go back into surgery tomorrow to try to repair the leaking situation. I told them I was just writing the email to notify my family and friends and to ask (again) for prayers for her. They shared some wonderful, positive things with me and I felt so so sooooooooo much better about what lie ahead when they left. Thanks, sweet friends!!

Sadly, tomorrow will be the 7th anniversary of my father's death. I'll never forget receiving that unbelievable phone call from my Mother, nor the sadness of then having to call my sister and Grandma to tell them the shocking and most horrible news. I pray that I'll never have to make the same phone calls to tell them about Christi. I know that Dad is with us from above with every step we make in this journey. Thanks to all of you for also remaining with us and for keeping Christi in your prayers during her fight. We are most grateful.

Email to Family / Friends:
Subject: PRAYER REQUEST: Christi's going into surgery (AGAIN!!)

With great frustration, disappointment and sadness, I write that Christi's chest tube continues to drain chiyle - pronounced "Kyle". Surgeon Dr. LaQuaglia felt that it may remedy itself in several months if the chest tube was removed, but that would further delay her treatment and it may not clear up either. Also, it may remedy itself if the chest tube is left in, but since she's currently not eating much, we'd then be looking at tube feedings and greater chance of infection by leaving the painful chest tube in. (It's currently causing pain and much nausea. Last night she was sooooooooooooooo tired, but she could just not get comfortable no matter what we tried. I slept for a couple of hours and then Shayne and I "tag-teamed". About 5:00 AM, I finally got her comfortable - resting on the parent chair, while I put down a blanket on the floor for myself and held her hand until she drifted off to sleep. I pray tonight goes better and that she'll need less morphine and that we'll all be sleeping in better locations. (smile.) This has been absolutely miserable.) Anyway, their recommendation is for surgery tomorrow around noon (July 29th, the 7th anniversary of Dad's death which was also around noon. What is this to mean?) Christi knows nothing about what will be her third surgery for this beast. We need to discuss how best to notify her of what she will again endure tomorrow. She's going to really be upset and terrified as she fully remembers what happened just four short days ago!!! I continue to remind myself: "But first seek His kingdom and His righteousness, and all these things will be added to you. So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of it's own." (Matthew 6:31-34) Then it will be a repeat of what we've done for the past four days - pray she lives through the surgery, then try for a speedy recovery and hope that there are no complications from this newest surgery and her new treatment can start soon. (Whew!!)

Today while I stayed with Christi, Shayne went down to the day hospital to meet with Dr. Kushner, Christi's main oncologist. He went over all of the test results which has basically showed only a slight decrease in her cancer over the past four rounds of antibodies. (around 25%) He said that he wouldn't be surprised to have her having some pain very soon indicating that her disease is taking off. All four aspirations, as well as both biopsies, continue to remain positive for cancer. He doesn't believe that any more antibodies will do any good. She's on the list for MIBG high dose therapy at all three institutions - CHOP, Mich and San Fr., but the soonest opening is late September. His recommendation is to start a round of irronoteacan next. She hasn't seen this chemotherapy agent yet and it's relatively mild. It's a newer chemo. This news is absolutely heartbreaking and devastating for us, but we know the seriousness of this horrible disease and want to try absolutely everything that she's able to tolerate. This is a devastating setback and we're numb with the news.

We'd appreciate your prayers for a successful surgery tomorrow with no complications this time and as always a full and complete healing of our beloved six year old precious Christi. Thank you!


Christi's Joke: Yesterday Christi whipped off a couple of jokes, but we were in the playroom and I didn't jot them down so unfortunately, I no longer recall what she told me and currently she's not feeling well enough to be a mini comedian.