July 9, 2007
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Miles Levin – rhabdomyosarcoma
This is an important entry. I have been reading for quite some time a site passed to me by another Xangan, Periculosus_Z. The site he sent me is on http://www.carepages.com and the patient is Miles Levin. You sign up at the site to read, just enter a name and a password. A little background, This boy is aged 19, with a hugely inspiring attitude, in spite of a pretty positive assurance he is dying from a rare form of cancer. Copied in exactly as it was written below, the last two entries from Miles hospital blog, reading them will make this entry self explanatory:
July 09, 2007 at 10:06 AM EDT
Many of you have described the trepidation you experience when pulling up my carepage to read a fresh update. Don’t worry, this is a good one.
The Sarcoma Foundation of America, an organization advocating for increased funding for sarcoma research and treatment programs, has named me as the recipient of their 2008 Leadership in Courage Award. Here is an excerpt from an email of mine with co-founder Tricia Thorton, describing the award:
“The Leadership in Courage Award is the highest award presented by the Sarcoma Foundation of America. It is given annually to a sarcoma patient who, through his or her public or private actions, writings or personal efforts, resulted in the inspiration to other sarcoma patients that they do not have to be physically, emotionally or spiritually defeated by sarcoma or a diagnosis of sarcoma. Previous recipients have included U.S. Senator Mark Pryor, Edward Kennedy, Jr., actor Robert Urich, best-selling author Carole Radziwell, and renowned sarcoma patient rights advocate Rose Burt.
The Board of Directors of the SFA all feel Miles Levin’s story of courage and inspiration in his battle with sarcoma makes him an eminently qualified person to receive this award.”
They later said they were so pleased I decided to accept the award, which leads me to believe they understood the likelihood that I would decline due to my busy schedule, and my meetings with secret governmental higher-ups. As if. I laughed at their uncertainty because it is truly a flattering, humbling honor. The schedule really is a bit tricky though as they present the award at their annual gala in New York…in June ’08. As I probably won’t be able to accept the award in person, we plan to videotape my acceptance speech and then show that at the gala. My family will be present.
So, big news; thankfully of the good variety.
I receive my radioactive isotope treatment today. The entire treatment is given in a single dose. It’ll come just in time, too, as the pain (particularly in the tumors on my spine) is escalating.
And if you ever doubt my dedication to carepages, I wrote this update with a 103.6 fever.July 09, 2007 at 05:39 PM EDT
A REQUEST
We need prayer, vigil, meditation, visualization, screaming, bargaining, whatever you do that makes you think you’re having an impact on what manifests on this earth. WE NEED MORE PLATELETS. Not too many….in the neighborhood of 20,000 more will do. (I knew nothing about platetlets – nor wanted to – before all this, and now it’s my sole focus.) We need them by Wednesday 10 am. The preferred next treatment option depends on adequate platelets, and Miles doesn’t have them at the moment.
Now that I have your attention, I want to tell you that I couldn’t help but chuckle when the results of his scans – lots of cancer in the bones – came the day after I commented on the fact that Miles has not a mean bone in his body. Some, including Miles, believe that cancer cells do not possess intentionality. Perhaps this is only a case of anthropomorphism when I identify this as more than a coincidence. Is it not true that cancer is (though perhaps not strictly speaking) opportunistic? And, if yes, isn’t there something significant about this irony? Could it be that the cancer that threatens to overtake him found a loophole, a weak link, a sneaky way in? I pride myself on being vigilant where Miles is concerned, trying to remembering every detail, so I’m a little miffed with myself for failing to anticipate this strategy. That’s why I am asking for your help today.
I think of Miles now, with bones and bone marrow filled with cancer and the internal organs fairly stable, like the images in a coloring book. Perhaps, in our mental efforts to eradicate, we’ve focused in the inside and not on the dark black outlines. I know I have. Shift your focus please, but not to the point of forgetting about the inside, which could errupt unexpectedly. . It’s a gift, a miracle, a something that his life sustaining organs are, for the moment, protected, but nothing to take for granted, not where rhabdo is involved. We’re dealing with a protean and unpredictable force. I’ve never met a rhabdo cell that I trusted. However, you must have been effective during the last vigil, which pre-dates his celebrity status, as he had a good response to the last intervention, as evidenced by his participation in graduation and prom. Now, there are many more hearts and minds to bring to bear on the task of raising platelet levels in the next 36 hours.
There are thousands of people (bless their hearts) who have come to care about and downright love Miles. And so many are asking, what can I do? Well, this is it: imagine more platelets – that’s the first order of business – and vaccuum up those cancer cells that have lodged themselves in the bones and neighboring marrow. (Please empty the bag elsewhere.)
I may have told you this before but it’s even more true now: the way I see it, we’re moving through the eye of a needle; there’s no room for error.,
More platelets. You’d be doing something for Miles and his family who love him, and you may impress the medical field with the power of thought.
Enough of “the mom” business……NancyPlatelet definition from http://cancerweb.ncl.ac.uk/cgi-bin/omd?platelets:
platelets
A particle found in the bloodstream that binds to fibrinogen at the site of a wound to begin the blood clotting process. Platelets are formed in bone marrow, where they arise from cells called megakaryocytes.
from http://www.medterms.com/script/main/art.asp?articlekey=4941:
Definition of Platelet
Platelet: An irregular, disc-shaped element in the blood that assists in blood clotting. During normal blood clotting, the platelets clump together (aggregate). Although platelets are often classed as blood cells, they are actually fragments of large bone marrow cells called megakaryocytes.
AN ARTICLE ABOUT Blood platelet regeneration: http://answers.google.com/answers/threadview?id=463638
Please pray and best regards,
Becca
