Thursday, April 26, 2001

As you all know we had the MRI done on Tuesday. The tumor is exactly the same size. Praise the Lord for that!! The FDA requires us to wait 6 more weeks before we begin treatment in Houston. We could have begun treatment immediately if the tumor had grown. So, for now we will be going to Columbia today (April 26). We will only be there today and tommorrow. I (Jami) will probably go back next week and possibly stay for the full week next week. The Dr. wants Levi to stay there as long as possible for the treatment that they can only give him there. That's a bummer because I'll really miss the rest of my family. Thank you so much for your incredible prayer support, meals and continuous love. We are blessed. We'll keep you posted.

Wednesday, April 25, 2001

(3 PM) The follow-up MRI took place yesterday afternoon. The results from that have been forwarded to Dr Burzynski in Houston. Decisions and plans are being made as you read this. Please check back later for a more detailed update.

Saturday, April 21, 2001
(Type in this color relates evidence of God's hand at work)

Filling in the gaps: Well, it has been just over 2 weeks now since the Lord directed us to stop Levi's radiation treatments, as the previous update below touched on. Here's how we heard from Him to change our thinking and make this difficult decision:

After a few days of strongly resisting any ideas about "alternative treatments", I was pouring my heart out to the Lord late at night on the day of the third (traumatic) treatment, asking God for clear direction and an end to confusion, when the phone rang. I let it ring and kept praying. It stopped ringing. In a moment or two, it rang again, and I felt like the Lord was saying, "answer it Jeff!". So I did. It was the grandmother of a child with exactly the same kind of tumor calling from Cincinnati. Over the next half hour or so she told me all about their experiences with traditional and alternative methods, and how successful the treatments administered by Dr. Burzynski had been. Because of the incredible timing of this call, Jami and I were beginning to reexamine our stand, but the clincher came the next morning on our way home from the fourth radiation treatment.

The three of us were sitting at IHOP finishing our breakfast, when two kind people came up to us and just started sharing from their hearts about how God created our bodies to heal themselves. The woman spoke about how her child had many difficulties growing up and how she had turned down the conventional methods in favor of natural alternatives - successfully. She spoke about radiation and chemotherapy, and the destructive effects they have on the body, especially children. Jami and I just looked at each other wondering what this conversation was all about. We had not yet even mentioned that Levi had an inoperable brain tumor. After we spoke about Levi's situation and our open hearts to whatever the Lord wanted for him, the man began to speak about a doctor that has had great success with brain tumors. He was writing down his name for us to check into, and it was the very doctor we had been researching as an alternative the last few days - Dr. Burzynski at the Burzynski Research Institute in Houston. We were really stunned, because that morning Jami and I held hands and prayed fervently that God would give us an "idiot-proof" sign of His leading ("Lord, do you want us to stop the radiation and do something else? Give us a sign today of the route You want us to take"). God sent us two angels to reveal his will for us. It sure seemed idiot-proof to us.

Levi's current condition: During these two weeks of waiting (for the next MRI), Levi has been swelling up before our eyes because of the steroids he's taking to keep the swelling of the tumor down. His appetite is very large now; he wants to eat all the time. His face is rounder and his belly looks as if it's holding a soccer ball. He has mood swings - cheerful, then maybe grumpy. Lately he has been lethargic and not too much energy. We have been giving him organic carrot/apple juice (using a juicing machine), along with immunity boosters (natural foods, herbs, etc.).

The latest additional treatment: Last Sunday night I spoke to an old friend of the family in Florida who for many years, has been plugged into a network of people around the country bent on a relentless pursuit of unbiased, truthful information about cures for this dread disease. Acting on his suggestion, Jami took Levi and drove to Columbia, SC first thing Monday morning, to meet with a scientist who has been researching cancer treatments for 25 years. He gave Levi a strict diet of "optimizers", which boost the immunity system to fight against the tumor. So this regimen will be a good supplement along with the treatment he will be getting in Houston.

The latest MRI update: We went in to Egleston Childrens Hospital for the scheduled MRI Thursday at 7am...

We were then told that the MRI machine had just "gone down". The engineers were an hour away, but they were still not sure that it would come back up soon. We didn't want to take the chance to wait, so we rescheduled. When we got home we got a call from Dr. Soapes, our pediatrician. We told her that the MRI machine was down. She was calling to tell us that, due to a miscommunication, we were not pre-certified - which meant we would have had to pay for the MRI out of pocket. So we praised God together as we realized that God had a good reason for causing the MRI not to work. The MRI has been rescheduled for Tuesday, April 24, at 1:00 at Scottish Rite Childrens Hospital, where our insurance carrier covers us.

So we are still waiting to see if the brain tumor has decreased or increased in size. When we find out Tuesday, we will quickly update you as to what our next move will be.

I am amazed at the love that has come our way from family, friends and even strangers. Meals have been coming every night for 3 weeks now. Many dear people continue to offer help, but so far every practical need has been met. People have been so generous in supporting Levi prayerfully (i.e. a couple weeks ago, a good friend of ours, Shannon, fasted from Sunday through Tuesday and met us at the hospital to pray over Levi. He came up from Columbus, Georgia - 2 hours away). Financially, many have given sacrificially to help us with Levi's treatments - our 12 year old niece, Nicole, emptied her "piggy bank" and gave us $40. It reminded me of the widow that had 2 "pennies" and gave it all. Jesus smiled on that. We are so grateful.

What we are going through is a tragedy, but an honor at the same time. Through our darkest times, the Lord is present still and very close. When everything seems good - no problems - we tend to drift from the Lord. This trial has many questions that arise, but it brings us closer to the One who we belong to. We do pray that God would be glorified in whatever happens. But we do cry out "Please heal Levi, Lord!"

Please pray for:
1. Jami's strength and rest; she needs a break somehow, restoration
2. Family unity; we feel so scattered and losing intimacy with each other / kids also
3. Jeff - self-employed, would not get overwhelmed with work and all responsibilities
4. Levi's full whole body healing, and restoration (miracle)

Love in Christ,
Jeff and Jami

April 7, 2001

Levi was diagnosed with an inoperable brain stem glioma two weeks ago. We are getting through our state of shock as our lives have been rudely interrupted (from our earthly perspective). What would we do if we didn't have our Lord Jesus Christ, and our Father to bring us through this? Now that we're facing the reality of it we must make some very big decisions concerning the treatment.

After 4 days of radiation (traumatic, we might add), the Lord has made it perfectly clear that radiation and chemotherapy are not the road He would have us take. The negative effects radiation and chemotherapy have on a child (from some of our research), is more than we are willing to chance--blindness, hearing loss, borderline retardation, 4 points IQ loss per year, and the list goes on. We are now in a 2 week waiting period for getting another MRI, which is the necessary amount of time after radiation treatment. We will then send copies of the MRI to Stanislaw R. Burzynski, MD, PhD at the Burzynski Research Institute Clinic in Houston, Texas. He has developed a far safer, more effective treatment than anything traditional medicine has to offer, using "antineoplastons" (for more information go to: www.cancermed.com). He will determine if we can be immediately admitted or have to wait 8 more weeks in compliance with FDA regulations. Please pray for this specifically as time is crucial.

If so, we will be going to Houston as a family for 2-3 weeks to begin treatment. Our health insurance will not cover any of this to our knowledge and it will be incredibly expensive. After this we will return and Levi will continue treatments at home. He will have to go back to Houston every 6 weeks to see if his tumor has decreased in size.

Presently this is our plan; it may change completely. The Lord may fully heal him in the next 2 weeks just in time for his next MRI.

Elders and intercessors have prayed over him and annointed him with oil, according to James 5:13-16. Prayer is going up everywhere for our precious son. "The eyes of the Lord are over the righteous, and His ears are open to their cry". Though Levi's chances for survival are very small, our "God is able to do exceedingly above all that we ask or think, according to the power that worketh in us". No matter what happens, may God be glorified. Remember, GOD IS GOOD ALL THE TIME!

Love in Christ,
Jeff and Jami

P.S. Please consider what, if anything, God might lay on your heart to donate toward this need. We expect to do some fundraisers along the way also, so if you have any creative ideas in this area, please pass them along!

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