What to do now? #7


The question of what are we doing now is a big one. A lot of people are afraid to ask. This very question has been at the center of our lives for the last 4 weeks. It has been the only topic of conversation in our house. Everything stopped in our lives at this question.

The first thing we have done, is seek God. He is the Author of this story. John has a purpose here on earth. We can’t see Gods plan right now. We are ok with this. Were at peace with not being in control.

The issue of Diagnosis: The final name of this cancer is anaplastic ganglioglioma. There was some question as to whether the genetics of the cancer would change the diagnosis. The pathology conclusion was that the cytogenetics did not change the diagnosis. It was sent to St. Jude and a few other major cancer centers. It is extremely rare. It is deadly. There is a 99.5% chance that the cancer will come back quickly. There is no gold standard treatment for this cancer. It is too rare. It hasn’t been studied. John has been given 3-9 months to live as it stands right now. This is where things get really hard.

The options: Radiation and chemo. There is another type of cancer, GBM, that has been studied. It is a different cancer of the brain. It is also a deadly brain cancer. It is the closest one they have studied to John Johns brain cancer. The treatment for this is 6 weeks of proton radiation along with a low dose chemo pill called Temadar. This type of radiation is more easily controlled than the old style radiation. They would place it in the cavity where the tumor was. There is quite a debate as to whether it is effective in killing this cancer or not. Not enough is known. The statistics given to us by the Drs were, 10%-20% chance of a cure. More likely it would add 18-36 months to his life. The side effects are expected to me minimal, but they are not sure what his quality of life would be exactly. It would be a wait and see sort of situation.

Option 2: Do nothing, treat the progression as they could with surgery and comfort measures.

Option 3: Holistics. You know i’m crunchy. By now, you know Steve is too. There are a myrid of options here. Ill get into that later.

Frankly, we have argued for weeks about this topic. The agreement we came to was, 8 weeks of holistic treatment and taking life one day at a time. If tumor regrowth occurs in that time, we have agreed to do proton therapy and chemo.

What holistic measures are we doing? Vitale Elixir, collodial silver, collodial platinum, vid d, epa omega 3, cayenne tincture, goldenseal, essiac tonic, high potentency whole foods supplements, juice plus, frankensense, high potentcy inositol powder, poly mva, & msm. I know i probably lost you here. The most simplistic way to explain this concoction, It is a mixture of extreme immune boosters and tons of antioxidants known to fight cancer.

Isn’t this nuts? No, not really. The doctors explained to us that we must decide whether we value quality of life or doing every last thing in hopes of a cure. They don’t often put on the table the option of doing nothing, unless the probability of survival is so poor. Unless, the treatment benefits are not significantly higher than the probability of death as an eventuality.

We will have another mri the last week of August or first week in Sept. At that time we will reevaluate our situation again. I know this post is short. It takes a lot to put this particular topic on paper without losing my mind. So, I gave you the facts. God is in control.

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One thought on “What to do now? #7

  1. Faith, I am praying and I am here for you & Steve. I think you have a really good plan for treatment for John-John. Everyone needs to pray for John-John .

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