Rick, Lexi and family
In addition to our prayers and best wishes, I would like to share my experience with you.
Believe me, the power of prayer works and I can verify if from personal experience. Late afternoon, July 17, 2002 (two days after retirement) I went to emergency with severe stomach pain. Shortly after I was admitted, I swelled up and became delirious. They took a CatScan and said that I had large tumors in every major organ in my lower body, including one that had blocked off the intestines and forced all the waste poisons back up into my system. They pulled my wife aside and said that even if they removed the blockage I was at Stage Five terminal cancer and could only live a few more days. From the initial biopsy and then the subsequent one taken when they removed the tumor blocking my intestine, they found my cancer was a rare type called Gastro Intestinal Stromal Tumor-GIST, untreatable by conventional Chemo and Radiation Therapy. . Though I had some problems for a year prior, internal bleeding, congestion, diarrhea, shortness of breath, this came as a complete surprise to me, my wife, and all of the doctors who involved in the diagnosis. It had grown large enough to completely restrict my bowels and then burst open spreading poison throughout my body.
When I woke up five days later, I was told that there was bad news and good news. The fact that I was full of cancer was devastating but they had some hope for me (thanks to the prayers of everyone that knew me). The research from my Oncologist (Dr. John Klune) along with the other doctors that operated removing most of my intestines, etc. discovered an experimental Chemo Therapy developed to treat leukemia that had also shown dramatic results with my rare type of cancer.. The Chemo is called Gleevec and is in capsule form. It was said to work on less than 20% of the patients with Gastro Intestinal Stromal Tumor, but they wanted me to try it. It is a very expensive drug (cost for my treatment is $6000 per month (thank god for health insurance) Now the unbelievable (power of prayer). Slightly over a year later, I have gone back to teaching a couple of classes in the fall and have enjoyed countless hours of work on my little tractors in re-landscaping our home. The last CatScan has revealed the mass has shrunk so small, the doctors would not find it if they did not know where to look. There are a few side effects, not all bad. While food tastes terrible and I have had, until recently, a lot of bile that creates a very bad taste in my mouth, I have maintained my weight thanks to a wife that watches my diet. The other notable effect is my totally grey to white hair has returned to nearly as dark as it was when I was a young man. I can live with both.
Again, for both my wife and I, when it appeared to be the darkest days ahead, something out there interceded and I go to sleep every night and wake up every morning with a little prayer of thanks.
I read your first and last posts to Lisa, my wife. While I was typing this post, she got on the internet and found some information to share. She actually did a lot of the research on Gleevec for my doctors, and occasionally is able to give me additional information to take to them when I go for follow-up exams.
From Lisa
I am a firm believer in the power of internet in modern medicine. When Leo was diagnosed with GIST, I researched it on the web, and I knew more-in some cases-about the peculiarities of his cancer and the medication for it than his doctors did. I did a quick search for Lymphoma and the site below popped up. It looks to be the best of the info sites, but I would check internet for others as well:
http://www.lymphomainnovations.com
This site appears to be the most up-to-date treatments for non-Hodgkins Lymphoma, which is what I assume your little girl has. You can also register for free on it and any new medical procedures/news will be immediately sent to your email. In addition, if you "turn" to the following page:
http://www.lymphomainnovations.com/lymphomainnovations/nhl.asp
You can even see web broadcasts from specialists in the treatment of this particular type of cancer.
My brother's stepdaughter is a little girl named "Lexi" as well, same age as your daughter, so I'm taking this personally. I'll keep searching and have Leo post anything new that I find for you.
A word of hope for you. Leo's medicine was not available less than 2 years ago, and there was no treatment (beyond early surgical intervention) for his type of cancer. I can tell you that technology is wonderful and miracles do happen. I see a miracle every time I look out the window and see Leo healthy and happily mowing the lawn on his tractor.
God be with you, Lexi and your family