That year, the "forever" was a mixed blessing, in a way you only understand once you know your days are numbered.
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| Stephen, showing off his new look. |
After the sixth treatment, we had a brief reprieve: the tumor had stopped growing, and even seemed to be shrinking a bit. But by the eighth round, its growth had resumed -- or in Stephen's words, "my tumor grew a tumor." It was time to change course. The oncologists switched over to the radiation portion of his treatment plan.
Radiation requires an incredible degree of precision. The basic intention in "zapping" any cancerous growth is to scramble the DNA of those rogue cells, in hopes that it will both kill the existing cells, and prohibit the division of any new cancerous cells. Understandably, anything that would damage cancer cells would destroy any neighboring healthy cells as well, should they be hit with the radiation beams. Millimeters count. Micrometers count.
A mesh screen mask was molded to the exact shape of Stephen's face and head. This mask would be secured to the radiation table during therapy, preventing motion to the extent that was possible. (Thankfully he was not claustrophobic -- just considering this makes me a bit anxious.) Using a "map" of Stephen's brain, created by the extensive series of MRIs he'd endured, the oncology team was able to pinpoint the exact location of the tumor. An X literally marked the spot. Visible red beams of light would cross and crisscross his face and head until the exact location was lined up, Stephen would take a breath and hold very, very, very still, and... the radiation would be transmitted for 15 seconds.
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| A radiation mask (not Stephen's). As before, you can do a Google image search to see one in use, but I found them a little too disturbing. |
The radiation began March 10th. He had 15 seconds of radiation, 5 days a week.
What to do with the other 23 hours, 59 minutes, and 45 seconds of each day when you're so far from home???
Live at the Ronald McDonald House.
Let me start off by saying I've got no love for McDonald's restaurants. In fact, if you'll indulge me in an aside; before my older son was reading, he used to point out signs as we drove around the city, and demand that we tell him what they said. We taught him that the Golden Arches meant "Yucky Hamburgers." It wasn't long before he was asking, "Mama, why are there so many yucky hamburgers?" He's still never eaten at one (although we feared that might bite us in the tuckus at some point on our cross-country road trip).
The Ronald McDonald House, however is fantastic. The organization is another 501(3)(c) non-profit, who happen to receive the lion's share of their funding from the McDonald's corporation, their franchisees, and a huge network of employees who volunteer their time and talents for the good of sick children. They felt it was their due to adopt the McDonald's name.
My mother and Stephen lived in a Ronald McDonald House for the better part of three months. The basic rooms were very much like a hotel, but the suites for long-term stays consisted of three rooms -- a living area with comfortable pull-out beds, a kitchenette, and a large bathroom. It cost just $8 a night.
This private space was in addition to use of the rest of the house, which was huge, open, bright, and airy. The communal space included a cozy family room crammed with soft couches on which to sit, visit, and chat with visitors or other families. It had a toy room with a television and video library. You could soak up the sun's rays in the atrium, or on warm days, play outdoors on the kid-safe, handicap-accessible playscape. There was a library full of books. Laundry facilities were free and on-site. The immense and immaculate communal kitchen was stocked with all of the basics: milk, bread, fresh fruit, juices, coffee, tea, and all the imperishable dry and canned goods you'd expect in your own pantry. Nothing fancy, but enough to eliminate the need to grocery shop when you've got more important things to tend to.
The house was very secure, with a round-the-clock staff who'd buzz the guests in and out. They even had their own shuttle to and from the hospital (again, handicap and wheelchair accessible) that was available 24/7.
The staff was warm and understanding. In fact, the director herself was a cancer survivor.
Stephen was able to meet other children with life-threatening illnesses, and see that he was not all alone with his affliction. My mother was able to commiserate with other parents, and very occasionally step away for a moment here and there to catch her breath. At that point in time, there was no better place for them to be.
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| Doing his best E.T. impression, in the Ronald McDonald House toy room. |
They became close with another family at the Ronald McDonald House, the family of a little boy named Devin. Devin was three years old, and had been diagnosed with bone cancer. I am happy to report that, despite needing a leg amputation, Devin has survived.
I hope he is out there somewhere, living a fulfilling life, and that the universe is treating him with some extra kindness.
Click here to read other installments of Stephen's Story:
Stephen's Story, Part 1: A Flashback
Stephen's Story, Part 2: Wait, what?
Stephen's Story, Part 3: Chemo for Christmas
Stephen's Story, Part 4: There goes the hair
Stephen's Story, Part 6: A Happy Birthday
Stephen's Story, Part 7: Great Danes and paper cranes
Stephen's Story, Part 8: PromisesStephen's Story, Part 9: The Long Journey
Stephen's Story, Part 9: The Long Journey
Stephen's Story, Part 10: Requiem
To donate to St. Baldrick's in honor of Stephen, click HERE!
See the blog post on "Binary Voting" for details on how to vote for or against my head shave!
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