Some of the material at Integral Health, particularly where the first personal singular pronoun (“I” or “me”) appears, is the work of TZF’s own Nancy (see Nancy’s Page). A dedicated seeker and healer, Nancy has studied and mastered many of the so-called alternative medicine disciplines. She is a graduate of the British Institute of Homoeopathy. She is not a Medical Doctor. Items where the pronouns “we” and “our” appear are the work of TZF’s editor, who has no medical background, and whose reports here are simply anecdotal. Finally, there are a few items at Integral Health where another person is specifically named as being the contributor, as for example on this page.

As you read here, please remember that only a licensed physician can diagnose and treat disease. Please talk to your own doctor before acting upon anything you read here (or anywhere else!).

The Way Home

Fully Involved

The writer of this article was a long-time friend of The Zoo Fence. Since writing this article, she has passed on. Here, from her unique perspective as mother, wife, Registered Nurse (RN), and seeker, she shared some of what she experienced and learned when her son was diagnosed with leukemia.

As I write these words, my son is 22 years old. He has come a long way, considering that he was diagnosed with leukemia at the age of six. His was the most severe case of leukemia a child could have. Not only was the malignancy found in his bone marrow, but it had infiltrated the blood-brain barrier, and thus, was circulating through his cerebrospinal fluid, and therefore, his central nervous system.

Of course, our first reaction to this disaster, was, Why! Why had this happened? And why to us? Over and over, my husband and I asked ourselves those kinds of questions, until finally we came to the only conclusion we could reach: Life is a mystery. There is no figuring it out, so we quit trying, eventually reaching acceptance.

While dealing with the “why’s and wherefore’s” something quite profound occurred. We realized that we were going to have to become, and to remain, thoroughly and actively involved in every aspect of our son’s condition, that it was not going to be enough simply to place our trust in the system, visit a doctor, take his or her instructions, and hope for the best. This disease was going to demand far more than that from all of us – not just from our son, but from his father and me, too.

To be sure, the boy might very well be alive today even if we had not become thoroughly proactive in his care (medical, psychological, sociological, and otherwise), but he would not be a functioning member of society. Why? Because – and I say this as a professional member of the healthcare system myself – the system needs our help. The fact is, it cannot do “it” by itself. It cannot diagnose, treat, and cure without help, the help not just of patients, but of their families, friends, loved ones, and others – your help: your intuition, your knowledge, your love, your devotion, your courage, and your perseverance.

The healthcare delivery system is incapable of performing alone, and it always will be, because it is a body of bodies, bodies running around in white coats with big pockets laden with all sorts of instruments like stethoscopes, pagers, notebooks, Palm Pilots, cell phones, flashlights, tongue depressors, latex gloves, and so on. Some of the dedicated folks who make up the system commonly go without sleep for 36 hours, and they genuinely take our son’s life, and the lives of countless others, into their hands. But their hands aren’t big enough, aren’t strong enough, to do it alone. They need help.

How do we give them help? For starters, we might invoke the wisdom and guidance of a Teacher. We might keep doing just that along the way. The road to recovery for out son is really never-ending; so we might have to accept help from the Teacher “forever”. This help we get from the Teacher helps us help the caregivers. But let this be clear: To be helpful, you don’t have to be a doctor, a nurse, a lab technician, a physical therapist, a psychotherapist, or any other such professional. All you need do is become involved. Read about your illness, your loved-one’s illness, search every book, every article, every archive, the internet; talk to everyone you know who knows more than you, or even as much as you. Take an interest, out of love. Then, take a position. And that’s the tough part.

As “just plain folks”, many of us often feel we are working for our doctors. This is a fallacy. Our doctors work for us. One way or another, we pay them. They took an oath, and they sometimes forget about that. They may need to be reminded, with love. Sometimes the love may have to get tough, and that is all right. But one way or another, our medical profession’s members need to know, by our actions, that we deserve to be treated with respect, with consideration, and with expertise. If the doctor doesn’t “love” us, that’s okay. But we deserve to have him or her understand that we are doing the best we can (as we now have promised to do) to help the profession itself to help us.

Getting back to our son, specifically, his medical biography reads something like this: leukemia at age six; treatment with aggressive therapy; more leukemia (relapse); more aggressive therapy (continued chemotherapy and radiation); search for a bone marrow donor for transplant; defeat in finding a donor; an autologous bone marrow transplant (his own marrow was taken out, “cleaned” and replaced); sustained trauma to the brain; seizures, stunted growth, nerve damage, loss of some gross and fine motor skills; damage to the spine (including a severe curvature called kyphosis); coordination problems, hearing loss, cataracts, hair growth deficiency, endocrine (hormonal) disorders, treatment with growth hormones and thyroid hormones and testosterone (from testicular and total body radiation); surgery to a hip which “came apart” after steroid (chemotherapy) treatment (this required a pin to be placed in the hip to “hold” it in place); leg problems and, not really last and certainly not least, osteoporosis!

A couple of million dollars and many years later, our son is, this very day, driving his girlfriend of five years to treat her to dinner. He has worked all week, delivering pizzas, on computers, on his car, doing electrical work under supervision, and working with his dad, who has helped him every step of the way. A year ago, our son could not make change. He did not get a “regular” driver’s license until he was 21 years old. But he never let any of that bother him. He never thought he couldn’t do what it takes. He has been, and he is, a living-walking-talking miracle.

A moment ago, I said we realized we had to become fully involved. What exactly does that mean? When our son was diagnosed, I knew nothing about leukemia, even though I was a practicing Registered Nurse. Still, I picked up the ball and ran with it. I never left our son’s side in the hospital. I watched everything anyone did to him. And, politely but firmly, I asked endless questions, questions like: Why is that procedure necessary? What is this procedure for? What medication are you giving him? What side effects might it have? Why are you coming into this hospital room with the flu, doctor? Are you using your best technique? Are you an expert in your field? What schools did you attend? Do you keep up with the latest treatment techniques? Do you read the New England Journal of Medicine? Did you wash your hands before you came into this room? Why must you stick him seven times to start an IV (intravenous injection)? Why do you need to repeat a lab test that you performed an hour ago? Tell me, doctor, tell me, nurse, what ARE you doing, and WHY? Give me a good reason, and then let me tell you what I think about it, and let me give you permission to do what you think you should do!

This is how it starts, and this is how it ends. We become involved, we become informed, we get in on the act. We then notice a change in the behaviors of those who are in the white coats. They tend to replace themselves with others more qualified than they, or they start paying attention to us. They make more visits, explain themselves more, ask permission, pay more respect. They do this because they know we know what they are doing and why. They want love and respect; they have to earn it. Now they know, because we have lovingly told them so.

And my husband and I did our part, too, and we still do. I gave our son his medications, and so did his dad. Our son needed injections; I taught his father how to give them. Years later, we taught our son how to give them to himself. We were constantly alert for signs of problems, and we called the doctors when we saw them. We reported fevers, rashes, odd behaviors, eating problems, digestive problems, and on and on. When doctors seemed not to understand the severity of a problem we were reporting, we persevered. We called the doctor back over and over, until the doctor paid attention, and treated our child.

And, when the doctors, some of whom meant well, gave up on our son, “writing him off”, we called in other doctors. On one occasion, I even threatened a lawsuit, out of love for my son. At the time, our son was in a bone marrow transplant unit at a university hospital. He had a blood infection, caused by a contaminated IV line into the neck. The condition called for surgery, but I had been told by the hospital staff that the surgery schedule was full, and our son would “have to wait”. I walked out of the hospital to a temporary apartment where I was staying (this hospital was away from our home), and there, I sat quietly for a few minutes, composing myself. Then, I went to the telephone, and called the hospital’s surgical chief of staff. I told him that my son had a fever of 106 degrees Fahrenheit, and that if he was not in surgery within the fifteen minutes it was going to take me to return to the hospital, I intended to take legal action. I really have no idea what I meant by that threat, or what the doctor might have thought of it; but it was my only trump card, and I had to play it, to save my son’s life. And, sure enough, when I got back to our son’s room, he was already in surgery, having the IV line removed. Six hours later, his temperature had dropped 4 degrees, and by morning he was much improved. I am certain our son would have died if I had not made that telephone call. Now, that does not mean I advocate threatening to sue whenever things do not go as you think they should. But here, acting as a mother, it was all I could think of doing, and sometimes, being involved, means going all the way.

Here’s another incident where my involvement was instrumental. When our son was about 18, he was diagnosed with severe osteoporosis. The cause was thought to be the result of drugs needed for his treatment, and lack of good nutrition as well as hormone deficiencies through all those years; but whatever caused it, he needed help. His primary doctor knew nothing about osteoporosis in young people (understandably so, since the young rarely have such disorders), and neither did his specialists, for the same reason. So, I did the research myself. I went to the internet, where I read everything I could find about osteoporosis – the condition and the treatments. Eventually I found out about a particular treatment, a drug call Fosomax, which sounded promising to me, even though it is usually given to much older patients. I called one of our son’s doctors – a pediatric endocrinologist, who is also a wonderful, kind, gentle woman who excels in her field, and I asked for help. It had been she who had ordered the bone density testing, which showed our son’s bones to be porous; but she did not know exactly how to treat it. I told her what I had learned about Fosomax, and that I wanted our son to have it. She was a bit fearful, although she stayed open-minded. She said she had never prescribed the drug before; but she agreed to research it herself, and finally she agreed to prescribe it. Besides the prescribed drug, I bought over-the-counter tablets of calcium, magnesium, iron, boron, vitamin D, and other vitamins, and I taught our son to take these supplements with his meals. Recently, after three years of this treatment, a bone density test showed his spine, which had been severely damaged, to be of normal bone density. There is no question in my mind that had I not discovered Fosomax myself, and insisted the doctor consider it, our son’s spine would never have improved.

And, guess what, the doctor herself was thrilled at the results. What’s more, she asked me if I thought our son should have another year of the medication, or if he should come off it. Yes, the doctor actually asked me what I thought would be best for my child! In response, I requested a faxed report of the bone density test, and observed for myself that the hips were still a bit porous. (Anyone can learn to read a lab test; the results are posted next to normal values, and you simply make the comparison.) At the end, I opted for another year of medication, noting that our son had tolerated it well with no side effects, and the prescription was refilled. He still ingests it weekly, along with the supplements.

The curvature of our son’s spine has corrected by several degrees, and no physician can explain the improvement. The official position as regards spinal curvature not corrected by surgery is: “No one has ever heard of improvement, only remission”. And, in fact, surgery on our son’s spine had been suggested. It would have involved operating from the back as well as making entry from the front, through the chest, which means the surgeon would have had to puncture a lung, and then use chest tubes to regain normal pressure in the lung itself! This procedure would have required that our son spend days in an intensive care unit followed by months of recovery. Trying the Fosomax medication along with a few supplements has certainly proven to have been a worthwhile course; but it would not have happened if I had not done my own research, and then followed through with our son’s doctor.

The damage to our son from all the radiation and chemotherapy has improved from the use of his brain and his body, and his good success with that use. He has never been told there is anything he is unable to do, and he has grown into an outgoing, happy young man. In a word, our son has persevered, with a lot of help from his parents and many others, to overcome the side effects of so many attempts to save his life.

Over the years, this much has become clear: Everyone did what they knew to do at the time, but it took the active, intense involvement of all of us. In the process, our son, his physicians, his father, and I all became both students and teachers. And we are all equals, on an equal playing field. Just know it to be so.