This is Daniel posting for our bonnie Bonnie.
Bonnie spoke with her beloved grandson, Zachary, again last night. As usual he first had to inquire whether Bonnie is STILL in the hospital, and how she is feeling, and does she hurt?
WHAT are you DOING there? he asks. Bonnie tells him she is resting up and sometimes she watches TV. He can not imagine that she is watching cartoons. He tries to figure out what an adult would watch. Do you watch the News, Grandbee? She says yes, the News and American Idol. Oh, Mommy can I watch American Idol?
Zachary is so attentive to his Grandbee and what she is doing it as if, by sheer duplication, he could magically arrive through the telephone line and sit on his Grandbee lap and tickle her. Of course he would claim to be "just checking her tummy for muffins" as they do, back and forth.
Only after sizing up his Grandbee will Zachary give Bonnie the news of his latest sports exploits. He hit a tennis ball so hard that it went over the tall fence and into the swimming pool. He also proudly reported that his baby brother had a good time yesterday at his other Grammy's house.
Bonnie listens with perfect attention to her grandchildren. It is as if she learning how to be a newborn and divide cells like a child, by tuning in to their very vibrations.
This morning it appears she has done just that...
50 neutrophils popped up in Bonnie's blood draw this morning! This constituted 15% of her White Blood Count. While this is an order-of-magnitude too low for a WBC, which should be more like 4,000 to 8,000, a count of 50 neutrophils is like the first crocusses popping up out of the snow; Life is returning to Bonnie's beseiged bone marrow.
The doctors are pleased with her "counts". Yet they continue to culture her blood every day: poking her arms anew and drawing 1-3 vials of blood from each arm. They act as if one side her body might have an infection that the other side doesn't. One would think that the circulation of blood was long ago settled by Harvey, but mine is not to reason why. My job is to make sure Bonnie has clean pajamas ... and to make sure Bonnie is informed and consents to every pill, test and new medication. They found me pretty focused when there was a lapse in this principle.
The team of four specialists from Infection Disease Control and another team of three specialists from Dermatology are looking for evidence of some fungal or viral or bacterial infection. With zero immune system, one can not be too careful.
Two nights ago at 8:30 PM, the Dermatology team of three doctors came and biopsied a sore on Bonnie's hip. It was standing room only. The divits they took were sufficient to require 3 stitches to close up the hole they left. They are in search of the source of her week and days of 101 + or - fevers. At about the same time the Radiology folks came to try and take Bonnie away for a CAT scan: damn inconvenient that there is not a virtual Bonnie so she could be treated by two departments at once.
At 10 PM the folks from Radiology came back and took Bonnie off in a wheelchair and breathing mask to the elevator and on down for a CAT scan to see if her lungs were infected.
Bonnie has been tethered, poked, stuck, cut, dripped and medicated and awakened for vital signs, questioned, scanned and probed so often in the last 23 days it is enough to make anyone consider themselves as nothing more than a chunk of meat. So far, not a single test has revealed the nature or sources of the infections.
But Bonnie remains Bonnie throughout; Her eyes do not focus well enough to read, yet there sits a quiet soul surveying the non-stop hospital scenes with humor and wit.
In the last three days, the lab found 5-10 percent blasts cells in her peripheral blood. Blasts are poorly formed, immature blood cells that will not mature or function properly - an indicator of the return of Leukemia in her perpheral blood.
So her chief oncologist, and new friend, Rich Stone MD, editor of the book they use at Harvard entitled "Oncology : An Evidence-Based Approach" tells her carefully of this negative indicator.
Bonnie Johnson PhD., author of a textbook with extensive use of statistics to ground and predict human behaviors in social settings, reminds Dr. Stone that she has only had blasts in her peripheral blood once before: when she was done with her previous chemotherapy at Stanford. And that was occassioned by a far more dismal bone marrow biopsy, which showed a majority the blood cells in her bone marrow were blasts, signaling the return of her Leukemia 40 months ago.
She points out that his colleagues at Stanford sent her home because they could not DO anything more to her... errrr uhhh, FOR her. Within months, with her only treatments being prayer and meditation, unless you count dialysis, huge doses of heart medications and physical therapy, Bonnie went into a full symptom-free remission for over 2 years: a "statistical improbability" to say the least. Her chief oncologist at Stanford even used the M word, twice, to describe her recovery.
As Bonnie humorously summarizes their exchanges. "Dr. Stone is doing his job and telling me that 'the cat is on the roof'."
I notice that Bonnie is cheerfully doing her job and reminding our good Doctor that there are many rooms in the mansion of health. She does so with a wry twinkle: "Okay, what else can you show me .... I remain unphased by the return of the 'evidence' of blasts." Their coordination, sense of serious play and mutual respect is a delight.
In the end, it probably makes little difference if Bonnie's bone marrow biopsy, scheduled for 4 May, will show tons of blasts or Leukemic cells in her bone marrow or not. Dr. Stone and Bonnie are going to go for the only known cure for her Leukemia, which is a bone marrow transplant, currently scheduled for around the first of June....of course, 'God willing and the creek don't rise.'
In the meantime, Bonnie is faithfully working her way through the St. Ingatius Exercises. She has communion most days of the week. And when she can focus her eyes, she works away on her last paper for her course, "Life as Pilgramage".
Bonnie understands that the true, evidence-based experts on creating healthy new cells are --- her grandchildren; She listens to these miracles of life, and their innate wisdom, like a buddhist monk listens to a Tibetan bell. /D
Whew!!! you must feel like a human pincushion!!!
I go online or the latest "posting" and tell Ed what's going on with you. We think of you and can't imagine how you & Daniel maintain such mountains of information you receive from all the doctors, etc.
We are so impressed with your positive attitude. Will keep checking this site for the latest, and hopefully good news on you.
Your Pennsylvania friends, Ed & Mary Lou
Posted by: Mary Lou Wertz | May 03, 2006 at 12:33 PM