I am following the journey of four children with cancer, something that began with Layla Grace, who lost her battle before the desperate hearts of many bloggers and tweeters, as her parents shared her with us, selflessly. In so doing, they managed to explode a good many preconceptions while reinforcing some comforting old truths.
|Layla and her Dad|
Our options are few... taking her off treatment all together and watching to see if tumors that have had time to grow resistant to the treatments grow. Or to find a new treatment. She is currently not eligible for any medical studies, as there has to be measurable disease on a brain scan, a reason for which I am entirely grateful she doesn't qualify. This leaves us to choose from less than ideal treatments, or foregoing treatment. Both with their own unique troubles.Derek was in Florida, vacationing before travelling to Boston for a new treatment necessitated by a vicious return of his cancer, and began to have unmanageable pain. Home again, a morphine drip eventually made him comfortable. His trip was scheduled for yesterday, but Derek had a "massive seizure," and plans were changed. He and his family are feeling the sudden shift from pursuit of a cure to palliative care.
The word 12 hours ago was that Derek is "resting comfortably" in the hospital, where he stayed overnight as a precaution.
He's a plucky boy, very bright, blessed with a family of depth, humor, and heart. I've marveled at him and all of them many times; I've tried to learn what they have to teach, as they smile through the tears.
This Friday, Hannah, who has osteosarcoma, will have a major, life-changing surgery called rotationplasty. I will be honest: Even knowing that this decision was made by wise people who love and are invested in Hannah, hearing about this radical surgery coincided with some preexistent nausea and I lost it. Since then, respect for her bravery and for her desire to live life after cancer in as unrestricted a manner as possible has replaced my initial wimpy somatic reaction. Hannah's Mom has recommended this video for folks to learn about rotationplasty:
Uploaded to YouTube by mayoclinic on Sep 3, 2010: "This is a pre-surgical video which describes rotationplasty, who the procedure is appropriate for and possible complications. This video depicts the process of being fitted for a prosthesis and learning to use it. The patient describes her active and satisfying life after rotationplasty, her emotions and the process of adjusting to living with a prosthesis."
The fourth child I follow is a complicated Little Man. His situation is complicated by the complicated socioeconomic factors at play within his family. It's all so... complicated.
More than any other child I've followed, this kid has been subjected to medication and treatment side effects that out-demonize even cancer. I've come to love his Mom, and her pluck, her persistence in the face of All That Is Unfair. I've come to understand him, knowing something of life on constant steroids, understanding how the face in the mirror came to be that of a stranger.
So these are the four young ones that I "follow." I don't stalk, I don't contact them or their families except occasionally through a comment in their CaringBridge or CarePages journals. It would certainly creep me out to have a stranger jump into my concerns -- and these sites are set up to provide patients and families with a good measure of protection.
Derek's family is so warm, so desperately funny as they travel with their "special boy." They would go to the ends of the Earth were there a treatment available for him, and are now brought up short by the realization that the treatment phase has passed:
The twist to the story, or the change of plan, is that Harvard is no longer an option. We have nothing left in our bag of tricks. The doctors indicated the disease is progressing faster than they anticipated. We need to enjoy every day and make it count. God has other plans for Derek.....see, I knew that boy was special.
But while God has plans for him, Derek is still here, and still in need of prayers, though no longer for a cure, but for peace and comfort.
Please continue to hold him in your hearts.