Journal Entry


Tuesday night, July 29, 2003

".......for I am the Lord, who heals you." Exodus 15:26

Greetings from the Pediatric Observation Unit, where God is healing Christi and where we have now resided for nearly a week. The above Scripture is from the inside of a most beautiful card I received from Casey and Irene S. of my hometown. Pictured on the card is a gorgeous oil painting entitled "Chief of the Medical Staff" by Nathan Greene. It shows an intense surgery with Jesus guiding the surgeon's hands. It's awesome!! I've had this card taped above my laptop in our room at Ronald ever since I received it knowing that a high risk surgery to remove Christi's tumor would hopefully, eventually take place one day and that in order for it to be a success Jesus was going to have to be in that operating room with our sweetheart guiding the surgeon's hands. And he was!! (Thank you, Lord!)

Since writing my email request for prayers to you yesterday afternoon, this is what has happened: last night she played BINGO in the playroom and wondered why she was not permitted to stay and play Blackjack too since she understands and can do the math needed to play. (They have an age limit of 13.) So we came back and Christi and I both played Blackjack against "The Dealer" (Daddy). Look out Las Vegas; she's really good! Oh, be ready Atlantic City - you're just an hour away!!! (hee hee!) She went to Jelly Belly's web site with Daddy where they purchased some of her favorite candy. (fat free! smile.) Next she contacted Crayola via their web site to suggest which five colors they should retire and to recommend five new colors for them to consider. (Only Christi!!)

Throughout the night last night she simply could not get comfortable despite the best of her efforts. When she would drift off, she'd awake crying in pain nearly every 45 minutes. It was miserable. She's whimper, "I'm tired, but I can't get to sleep." Being unable to comfort her, Shayne and I felt horrible about the pain she was experiencing despite the morphine. About 4:00 AM Daddy was emailing a doctor at Texas Children's in Houston and a Doctor at Children's Hospital of Los Angeles to gather some information about their newly opening Phase One Studies which appear to be aimed for children with refractory disease like Christi. Anyway, Christi wanted Daddy to get in bed with her and snuggle. (Not easy to do with many wires, tubes and a large incision coming out of her, but that seemed to do the trick and she finally relaxed enough to sleep.) A team of doctors woke me up at 6:00 AM and said that she had no drainage come out of her chest tube overnight and that was wonderful news. Christi then asked me to cuddle with her on my parent chair, but complained that I was just sitting there not really cuddling. (I was afraid to hurt her.) At 7:15AM she had another chest Xray done. Surgeon Dr. LaQuaglia came about 8:30 AM and said, "It's like a miracle." (chest Xray came back normal and no tube drainage either - YES!!) I told him that about 250 people were praying for her last night after our friends and family started their prayer chains. He said that he was one of them too which almost made me cry. This guy is awesome! Dr. L. said that another full chest Xray should be done to definitely confirm it, but there appears to be absolutely no need to do another surgery now. I took her down about 10:00 for another series of Xrays. These were great too so at 11:30 AM, her chest tube was removed after these Xrays also proved to show nothing abnormal any longer. PRAISE THE LORD!!!! THANK YOU GREAT PRAYER WARRIORS!!!!!!! Now (about 1:00 PM) she was completely tube and wire free, having pain, but it was manageable. A final late afternoon Xray down on the second floor (hours after her chest tube was removed) showed that all has drained properly. YES!! She was pretty tired and a bit uncomfortable at times today, but nothing like before so we fully believe she's on her way to healing from her July 24th surgery and ready to continue marching on in this battle.

This afternoon when Shayne asked Dr. LaQuaglia's Assistant how good was today's late afternoon's Xray the Doctor responded it was great. When Shayne pushed him he added, "Actually, I've never seen one clear up better that had amount of drainage." "The power of prayer." Shayne responded back to him. (Amen!)

What we didn't expect today was that her low fat diet assigned yesterday is really to be almost a NO fat diet. (She's permitted a maximum of 5 grams per day. That's it! Ugh!) This is to assist her lymphatic system which was wounded in the surgery. Her no fat diet (for a week, possibly two) means no meat including tuna, turkey, poultry, etc. (wow!) That's going to be hard for the "Salami Eater" in our family. Of course also no nuts, peanut butter, butter, yogurt, granola, and other things she loves. She can have all of the fruits, vegetables, rice, bread and pasta she wants. Shayne zipped out to the grocery store while Christi and I played Yahtzee, Gold Fish - with her own little modification to it, and computer games. We thought as long as he was gone we may next have to watch every video the playroom has (They have over 500 videos here!!!!) but then he was back. When Shayne came in he was carrying three small bags. He said, "This was it! I bought everything fat free the store had." Oh, it's going to be a long week or two. We were both surprised at how many things that we thought would be okay still had 3-4 grams of fat in them - eliminating them from her diet. (Like we needed another challenge, oh well!! It's good for all of us; let's do it!)

Dr. Kushner stopped by and chatted. (Embarrassed were we to learn he stopped by on Friday about noon too, but all three of us were completely out of it and couldn't be awakened. He knew we had come from Japan with it's 13 hour time difference so he figured that was what was going on in Christi's hospital room. Jet Lag!!! - a small price to pay for a most fabulous and blessed trip! Adding the stress of Christi's life-threatening surgery on top of jet lag just made it exhausting for us. I think we're fine now, finally.

Our check up with the fabulous Dr. LaQuaglia will be on Monday. Also, she will start her new chemotherapy on Monday too. This will be Irinotecan (low dose) for two weeks. Unless there is progression, two rounds will be endured. This will possibly be followed by a third chemo around of carboplatin and some other agent with it. We're praying hard this will clear her bone marrow of disease and get her to a NED status. These chemos seem to be effective at keeping the disease steady, but not really eliminating it like we need to happen.

Finally, and most importantly, thanks go out to you for providing your tremendous divine intervention!! So happy we are that Christi was spared another surgery! There's something to be said for Guardian Angels (I miss you Dad!!) and angels here on earth really pulling for her! THANK YOU! friends and family!!! Our prayer request continues to remain: that her bone marrow clear with the Irinotecan, no new disease rears its ugly head and that she has a full and complete healing. Yes, that would be praying for another miracle, but that's exactly what we are doing. Thanks to you all for your continued help and support!

With love, thanks and gratitude,
Angela

What's Next? We hope to have a better night tonight with Christi feeling more comfortable and hopefully all of us sleeping better here at the hospital as a result. We are hopeful of getting discharged tomorrow morning and of getting the van out - if it starts (hee hee) and driving home for the weekend. We can't wait to get little Shayla reunited with us again. We will all drive back on Sunday. It's been nearly six weeks since we've been home so we're most anxious to sleep in our own beds, eat off of our own silverware, play with Buttercup and let the girls play outside in the yard. Yipeeeee!!!!

Until Christi was diagnosed I always wrote down the funny little things the girls said knowing fully that I would forget them if I did not. Sadly, I haven't kept up with that throughout this ordeal. My wonderful Aunt Marty sent me an email each day letting me keep tabs on Shayla so I will "jot down" here a couple of Shayla's funnies with hopes of preservation this way. (We miss you dearly, Shayla! We'll be home to hug you and to be all together again very soon, sweetie!)

Shayla funnies for the day:
Shayla announces to the check in girl at the Swimming Pool Park "I'm from New York and I'm staying with Aunt Marty". (I've got to admit that saying you're from New York is more impressive than saying your from Tiffin.)

Shayla takes over my newly redone patio enclosure, relaxes on a chaise lounge, and says "I would like peaches on a tray, please". (I'm thinking what, "Is this vacation at the Mariott??????")

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