Journal Entry

Friday morning, April 4, 2003

Now glory be to God, who by His mighty power at work within us is able to do far more than we would ever dare to ask or even dream of...infinitely beyond our highest prayers, desires, thoughts, or hopes.

-Ephesians 3:20

Hello Prayer Warriors, Cheerleaders, Blood Donors, Fundraisers, Babysitters, Friends and those who just happened to stumble upon Christi's web site! Thank you for helping us along with Christi's journey and for providing us with comfort and hope. HOPE is a fabulous thing and has done wonders for getting me through this week. I feel really, really good about this Phase One experimental treatment and believe there is a hope for achieving a NED (no evidence of disease) status from it. Thanks for your divine intervention and continued prayers! We are unworthy and we thank you from the bottom of our hearts for all of your labors of love throughout this tremendous situation bestowed upon us the past seven months. Thank you!!

Saturday afternoon we had just finished eating our lunch in the common area dining room at Ronald. I was getting ready to start cleaning the table when I decided to sit down for a quick, quiet moment to read the wonderful Attica Hub while Shayne was taking Shayla back up to our room. Tears started rolling down my cheeks as I read about a fundraiser being conducted back home that I again had no idea about. As I've said over and over, if there's one thing I've learned through this ordeal it is about God's great goodness displayed through people. Thank you angels on earth for doing God's great work!! You've really lightened our load.

Things were off to a great start this week with the new 3F8s/Beta Glucan Experimental Trial that Christi is on. While the pain is horrendous, the really strong punches dished out are kept to about 20-30 minutes of the 2 1/2 hour daily treatment regimine. And this kid is tough! She's handled the intense pain like a champ! I truly cannot believe this five year old girl!!! She's never screamed or hollered. Instead, she curls up in a ball, squeezes my hand and lets the tears quietly roll down her face. One day during this time she said, "This is the hardest part of getting rid of cancer, Mommy." I think she has the strength to do great things for this world. She's so brave! During this really painful time, I hold the blue oxygen tube in front of her face to help her breathe better. She calls this "being blow dried". I try not to laugh as she's experiencing such horrible pain and suffering; however, it cracks me up when she says that. Instead I try to keep a straight face and reflect on the fact that God knows exactly how I feel as His son experienced excrushiating pain on the cross. She's also had daily outbreaks of hives and vomitting. She's sleeps away most of the afternoon and evening, but wakes up feeling decent in the morning. This is not a plesant exerpeince in any way; however, I have hope that this terrible treatment she's enduring may all be worth it. Drinking the beta-glucan every morning is getting more and more difficult. When she "gets sick" after taking it - she has to start all over again with more. (not fun!)

Unfortunately, Tuesday evening fever broke out. This was totally unexpected - although we were later reminded that even though we weren't told to watch for fever, that this is a new study and anything is possible so to be prepared for anything to happen. What happens in the petri dish and in the mice is different than what will happen in humans. At 10:00 PM Shayne and Christi left for the hospital's Urgent Care center. At 2:00 AM he telephoned me back at Ronald where I stayed with Shayla to let me know that she was admitted and was in her room up in the hospital. We were very scared that they'd stop this treatment; but they did not. Praise the Lord! Her cultures did not grow anything so we assume that it is the treatment and not an infection. (P.T.L.!) Even though she was inpatient the most wonderful nurse came up each day and sat with us during the time the treatment was administered. We've had the best of care here despite the fact that this place is so huge; it's like it's own little city.

Shayla and I spent Wednesday together and enjoyed attending the Metropolitian Museum of Art's "Start with Art" free preschool program again. It's the perfect walk and Shayla's drawing is really improving. The poor little thing always compares herself to Christi and thinks she can't produce great art. The Met's programs have been a HUGE inspiration to her. On Thursday, Shayne picked Shayla up from preschool and they enjoyed their afternoon together again going to the Museum of Art.

After much preschool shopping, I found what I believe to be the perfect place for Shayla. She will attend three mornings per week. While the price nearly knocked my socks off, it shouldn't have for the cost of living in this nice area of New York. The center is nice, the location ideal, the teacher patient and the director absolutely wonderful! We really appreciate them taking Shayla in the middle of the year and allowing her to attend on a month-to-month basis. Shayla started this week even though at 8:00 on the day she was to attend beginning at 9:00 she insisted to me she wasn't attending. Well, after getting the priviledge of picking out her own outfit, off we went. (Lord, please help me to remember the tricks parents need to sometimes use to get my students into my kindergarten classroom.)

This weekend Christi should experience withdraw symptoms due to coming off of the heavy narcotics she was on. We had planned to drive Long Island, but that is on hold because of the fevers she had this week. She came down with fever about 38.5 degree Celcius EVERY night about 9:00 PM. Next week will be an exact repeat of this week; however, we pray that the dreaded fevers don't set in.

Speaking of "hope" in this week's entry - Christi is featured as an April child on the "Hugs and Hope" website. Be sure to check out the Links page for other sites and stuff.

Thanks for all of your loving support! We appreciate your prayers. At this time we especially pray for our cancer fighting friends and for our fighting soldiers. May our loving God wrap His arms around you and keep you safe and healthy! Thanks for everything!!


Christi's Joke: Knock Knock (Who's there?) Christi Ann (Christi Ann who?) Christi and Shayla!

Christi's Quote: Kindness gets kindness back.