Thursday, December 07, 2006

Chapter Two

This is the last you'll hear from me or Amy until after the weekend--I have an early flight tomorrow morning. For those of you hitting the roads or skies to be there tomorrow, safe travels. For those of you who will be there in spirit, send good vibes and give someone you love a big smooch.

Sunday's early post was indeed a rough one, and many of you wrote to me privately to share your reactions. Thank you for that--it touched me and Amy, too. Sahara and her family spent the week considering their options, and in a moment, you'll see what they decided.

Just a couple more things before I shut up: remember, Sahara is a young girl, and while her spirit is enormous, her health is a little fragile. Please respect her boundaries.

Tomorrow night is a celebration--of life, of hope, of faith, of music, of joy, of all that is good.

See you then!

Hello everyone,

It's been a long week, and we are all SO ready to have some fun on Friday night! Safe travels to everyone who is coming to Cape Girardeau. We are so happy that you are attending the show and hope you have a great time.

We have, so to speak, "backed up and punted." During the time that we were at MD Anderson, I continued to do research on treatments for brain tumors. I knew we had to have a Plan B ready in case things did not succeed at MDA. There are so many promising treatments out there; not all of them are in the realm of traditional medicine, not all of them are in the United States, and not all of them are accepted by mainstream society.


Time after time, as I studied as much information as I could, the name of the Burzynski Institute in Houston kept popping up. We've even had a couple of encounters with people whose lives Dr. B has touched. He has made remarkable progress in treating a variety of cancers with what are called "antineoplastons." He has had some amazing results in treating patients with brain tumors. They are conducting a number of FDA clinical trials with these ANP's...and Sahara qualifies for one that targets tumors like hers.

Plan B is now in full swing, and once again we are Houston-bound. Paperwork has been submitted, medical records have been transferred, and on Monday at 8:30 am, Sahara will become a new patient at the Burzynski Institute. By the grace of God, Monday marks the exact day that enough time will have passed, post-chemo and post-radiation, in order for her to begin the new treatment. We'll be in Houston until her ANP dosage is established (they are going to try very hard to have us home by Christmas). We will be trained on every aspect of the treatment, including administering them to her ourselves. After that, we will be doing her treatments at home. ANP's are non-toxic...they are not chemotherapy. They work to reprogram cells, getting rid of cancer, and bringing back healthy cells. They are administered through an IV with a small, portable pump (via the portacath that she already has implanted in her chest), 24 hours a day. She will be free to do as she pleases, because the pump will be contained in a small backpack. It might be a bit inconvenient, but we hope to someday look back and know that it was totally worth it!

As a family, we decided that Sahara has had enough chemo, and we don't want to put her through it again. The side effects of the options we were given at MDA (for new clinical trials using stronger chemo combinations) were horrendous, and of course there are no guarantees that they will do any good. We are going to take a new direction, and I'm sure there are those who will disagree with our choice, but the research shows that this treatment is saving the lives of patients who might not otherwise survive.

We have nothing but good things to say about the wonderful doctors and staff at MD Anderson. Throughout it all, they were the most supportive, helpful, caring people...and they have told us that they will be there for us if we need them in the future. I have the utmost respect for that institution, and especially for Dr. Wolff. We just didn't get the results we needed to achieve.

Sahara is ready to get started, although she's not looking forward to being away from home again. At least it's only for a couple of weeks instead of months. She continues to be a fighter, and believes with all her heart that God is working to cure her of this disease. This is just the next chapter in the book. We thank you all for your continued prayers and positive thoughts as we begin the new treatment.

Can't wait to see everyone at the show Friday night!

With love,
Amy