Saturday, September 1, 2012

Our governor declared today "Wear Your College Colors Day."
I’ve been getting a self-guided crash course in the world of hospitals, oncology, Pharma, and peripheral subject matter as I flounder in a sea of caringbridge pages, government documentation, news articles and medical journal articles that use words so long that I run out of breath trying to sound them out. I’m not the sharpest crayon in the box- though I am colorful – so, it is a confusing and time-consuming task. I’m trying to find a consistency of success and then plot a path to survival. The problem is there are not that many ahead of us still on the road. How can I learn from the past if there is little history? We are in the pack and making history now. One day someone will be plotting her child’s path according to our path. It really hinders my progress to have no access to a crystal ball or at least a consumer reports of recurrent medulloblastoma treatment. In addition to “evidence-based medicine” (EBM) a term I recently learned, I’ve been skimming articles about homeopathy, naturophathy, and alternate therapy for a plan of maintenance during his “in-between scan” time. I believe we can be proactive during those three months by experimenting with a harmless natural protocol. And, by the way, they are not all harmless. For example, one too many drops (yes, drops) of H2O2 could mean death, especially for a child. Does it work? I don’t know, but it seemed too precarious for me to experiment with for him. And, fishing through the EBM documents, it is so difficult to translate the success of a trial. Also, I’ve gotten several suggestions about the Burzynski Clinic. In researching him, he is being sued and his treatments are on hold until 2013 (or until further notice). I found the lawsuit, but I actually emailed the office and they told me about the hold. I am not one to buy into conspiracy theories, so I am already skeptical of this guy and it doesn’t help that he doesn’t publish any kind of documentation of his results. And, Burzynski is kind of “he who shall not be named” when trying to find him in any peer-reviewed journals. But, it has been interesting to see how often St. Jude and the lead doctor of Eli’s protocol pops up during my searches.
This is a room in the Med Room instead of the chair. Eli
got platelets today. His ANC is almost 2000.

So, any spare minutes I have here I read, list, plot, plan, bang my head on the desk (all the while stuffing my face with high-dollar dark chocolate covered pecans from the cafeteria). Each night it seems like I go to bed (with a belly-ache) knowing less and having more questions than when I started the evening’s search. Eli is high-risk classic medulloblastoma, which is the most common and the least treatable. Survival of a recurrence is less than 10%, which the margin for error is probably that. Though we are blessed beyond anything we could have known for him to be among a patient population being treated at a facility recognized by its professional peers as the standard for which they strive, Eli’s future long or short isn’t going to be good because of what he is fighting. If he lives to his teens he will be a member of an elite group that likely faces some quality of life challenges because the side effects of such harsh treatment is gradual. If he does live beyond the five year mark to survival status, it is highly unlikely he will live very far beyond teen years just because of the toll the medicine will take on his body. Sometimes when we are driving on the highway with a semi truck coming toward us I think, “Lord, just take him quickly now.” It is shameful that I should be so lazy, weak and fearful. His short seven-year-old life has affected more lives than my own has or ever will even if I live longer than Besse Cooper, of Monroe, GA, who is the oldest person living at age 116. So, I ask for forgiveness of my weakness and pray he be a testament and continue to be a light. In other news, Jack seems to be recovering well from his second surgery. You may send cards to him at: VCU Health System, Children’s Hospital, Attn: Jack Heming, 1250 East Marshal Street, Richmond VA, 23298. Blake is out of ICU, but with little if any change. They only have more questions and no answers after a list of tests, imaging and scanning that have all been normal or as expected. So, a prayer for him as they search for answers to his abnormal behavior. I also would like to ask a special prayer for Hunter’s mother. She posted pictures of her and Hunter tonight, as I’m sure she is hurting here a week after he passed. Thank you so much for your response to my “Encouragement Challenge.” You guys have generous hearts, and someone will smile because of your effort.


  1. Eli, we are the ones who had our day brightened by your visit to Rebel Rags on Sunday. It had been a busy, long day and we were feeling a little tired. Then you came in and we were blessed by your visit. Your strength and courage are an inspiration to us.

    1. thank you, so much. We loved our adventure, and your attention to him was so nice.


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