Monday, June 25, 2007

Thank You Doctor

When my youngest son was three years old he started having seizures. We didn't know they were seizures at first because he was such an imaginative child, with the make believe friend and all, so when he started staring off into space and giggling, I assumed he was watching a fairy fly by. One day, a friend was with us when he had one of these mild mini seizures and she was alarmed. I was alarmed also as this time his eyes rolled back into their sockets. We took him to a neurologist who ordered an MRI and that's when they found the tumor. Before I knew what was happening, a surgery was being scheduled.

Surgery? Now? Could you refer us to someone for a second opinion? Nope. No time for that. A second opinion was deemed unnecessary. Well doctor, not necessary for you maybe but it is for me. This is my baby's head we're talking about and excuse me for causing a delay in your plans but I'm not ready for you to pull out your knife just yet. And just FYI, I may never be ready.

We were offered no referral, only admonished for our refusal to submit to the doctor's wishes. We were on our own. Thus started our intense research, the quest to inform ourselves about brain tumors, cancer, surgery, alternative/integrative techniques to deal with what we were up against. And what were we up against? We started out fairly clueless and I didn't trust doctors much to begin with. Most (not all) of the ones I had come into contact with seemed way too self-assured in their opinions. It wasn't that I didn't respect their immense training and sacrifice, it's just that so many of them seemed to deem anything that they hadn't been trained in, or ideas different than their own, as uneducated and unworthy of consideration. We had a huge job cut out for us. Bit by bit we acquired knowledge and connections. This was before the Internet mind you. The transmission of information back then was labor intensive. We persevered, step by little step and were fortunate to have the support of family, friends and a whole community of caring folks.

I was poor enough at the time that all of the appropriate agencies kicked in to cover the costs of most everything. There seemed to be an invisible network of helping services wanting to support us. Some of these agencies would contact us and offer their services, setting up home visits to get the paperwork filled out. It was awesome.

I learned firsthand what being "numb" felt like. I had always heard that expression but had never experienced it. It wasn't like when a leg "falls asleep" and is all achy and tingling, or like when a dentist gives you a shot of Novocaine and your lip feels all fat and too uncoordinated to eat and you can't talk quite right. No, I was very busy, fully engaged in all the activities one has to do in a situation like this but I was physically and emotionally numb. Not feeling anything. I suppose I was in a sort of shock.


We put our son on a macrobiotic diet and dosed him with all sorts of natural medicines (teas, tinctures, supplements). We did visualizations. He was really into the Teenage Mutant Ninja Turtles and we would use them to attack the tumor, using the powerful healing color of their different hued face masks to shrink it. We prayed. Our whole community prayed. People sent us lots and lots of love.

We stayed with friends in Bolinas and visited the Institute for the Study of Health and Illness At Commonweal; checked into a cancer institute in Mexico; a doctor with an alternate treatment in New York; We had a notebook full of names, numbers, hospitals, doctors, institutes, therapies, books; we read a lot; and made a lot of phone calls.

We came across some information on some alternative therapies that were in the experimental stage at Stanford Medical Center in Palo Alto, California. We had friends with a friend who was a doctor at Stanford and with his connection we got appointments with doctors in neurology and oncology. We were hopeful having heard that Stanford was progressive. But as it turned out, the neurosurgeon was cold and arrogant, cut from the same cloth as the doctor we had first seen in Chico. The doctor in oncology was worse. We were admonished for being not only ridiculous but negligent. They insisted that our child needed both immediate surgery and post op chemotherapy, that there were absolutely no other options. They scoffed at our open mindedness to alternative therapies and told us that we were risking our child's life with our fanciful ideas of holistic health. We fended ourselves against their manipulative attempts to force their plan of action upon us and couldn't get out of there fast enough. I resisted the temptation to run to the car and speed away as quickly as possible. They treated us like we were such kooks that I imagined they had put an emergency call into Child Protective Services (CPS) and that the police were making hast to detain us.

I had a mini breakdown in the car. My numbness had worn off and I was overwhelmed. Too tired to drive home, we stayed at my sister's in San Francisco to recuperate. The next morning, after stopping for coffee, we headed to the freeway and I saw a sign for UCSF and the hunch came. I told my son's father to drive there. When we arrived I didn't have clue as to where I was going or what I was going to do when I got inside. I just jumped out of the car and told him if I wasn't back in half an hour to wait for me in the lobby with the MRIs (pictures of our baby's brain and tumor).

I searched the directory and found many departments with the name "Neuro...something or other" suggesting I might want to check them out. Then I saw Pediatric Neurosurgery on the seventh floor and headed to the elevator. When I found the office I walked up to the receptionist and told her "I'd like to speak to your very best pediatric neurosurgeon please." Truthfully, I don't recall my exact words but it was something very close to that. She was very friendly and accommodating, asking me a few questions and then offering me to take a seat. In a few minutes Joyce appeared, introducing herself. She was a pediatric neurosurgery nurse and was very kind, listening to my story. As I was talking, a doctor just out of surgery with those little blue paper slippers covering his shoes and the blue paper mask still hanging from his neck, walked by. Joyce said, "Oh Dr. Edwards, I'd like you to meet Adrienne." We shook hands and she gave him a brief run down of my situation. Dr. Edwards asked me if I had my son's MRIs with me and when I told him yes, he offered to meet me in his office in 30 minutes, he just needed a little time to freshen up.

I hurry down to find my son, his father and the MRIs waiting for me in the lobby. We head back to Dr. Edwards office and he greets us in a friendly manner and then sits down on the floor and plays dinosaurs with our son. This is the first doctor that ever even seemed to notice our child was a real person. I kid you not. After the initial meeting with the first neurologist, all the doctors seemed to care about was looking at his MRIs and trying to convince/force me and his father to do things their way. My son always buried his face in my chest for the duration of our various meetings with doctors. Not this time.

After dinosaurs, we shared with Dr. Edwards some of our story, how we were investigating various options, describing some of the different modalities we were interested in and what we were currently doing. We expressed our interest in his professional opinion. He spoke frankly, telling us that he recommended surgery. He admitted that he knew very little about the alternative therapies that we were investigating, surgery was his forte. He told us that nothing we were currently doing to help our child sounded unreasonable or dangerous to him and he encouraged us to keep up with the ninja turtle visualizations. He affirmed what we already knew, that as parents, it was our duty to inform ourselves in order to make the appropriate decision for our child's health care. He said there was no immediate rush for us to make our decision, but suggested the sooner the better and gave us a reasonable time line to work with. He then offered to be our son's surgeon if surgery was the route we chose.

Finally a doctor who gave us what we asked for--his professional opinion. Then he backed off, acknowledging our right as parents to decide what route to take. I had finally found a doctor I could trust.

When we returned home there was a phone message from Dr. Bernie Siegel. I had written him a letter about our situation and he had basically responded in the same manner as Dr. Edwards, saying something to the effect that he was a surgeon so surgery would probably be what he would recommend. He acknowledged our powerful role as parents and told us to trust ourselves, that we knew what was best for our child and we would make the right decision. The compassion of his message gave me the inspiration to trust my inner wisdom.

After this, everything started falling into place. We talked with the alternative therapy doctor in New York, who thought our son needed surgery and recommended we refuse chemotherapy and do his therapy post op. He gave us a referral to a doctor in Chicago who was "the best laser surgeon in the world." We contacted this doctor who after looking over our son's MRIs, told us that the expense of traveling to Chicago would be unreasonable for us. He said that our son didn't need laser surgery and that he was going to give us the name of the best pediatric neurosurgeon he knew of and fortunately for us he was right in northern California. His name? Dr. Michael Edwards, at UCSF.

I knew Dr. Edwards was our saving angel the moment I met him but we needed time to tie up all the loose ends of being responsible parents and checking out all the reasonable options before making our decision of what to do and who to do it with. We crossed our T.'s and dotted our I.'s and followed our hearts all the way into the operating room, with this man who we were trusting to cut open our baby's head and dig into his brain. That's a big fucking deal.

Dr. Edward's removed 85 to 90% of the egg sized tumor that had grown in our child's brain. The part that he left had traveling down through the Cerebral Cortex into the Corpus Callosum which was an area too delicate to mess with without causing irreparable damage. We were sent to oncology who recommended post surgical chemotherapy. After weighing the cost/benefit ratio we decided there were too many risks and declined. Our decision was accepted with respect. If the respect was feigned, it was done with grace.

With the exception of one overbearing, control freak, nurse, the staff at UCSF was compassionate and accommodating of our special needs and requests to facilitate our style of nursing our child back to health. The nurses in the pediatric wing carried babies in backpacks and frontpacks while wheeling toddlers around in Radio Flyer wagons in the midst of doing their rounds. The nurse's station was beset with children. I think most of them were happy to shut the door to our child's room, leaving him in the care of two available and competent parents. They were available when we needed them, checked his vitals, delivered his meds and otherwise pretty much left us alone. I shared his hospital bed with him while his father slept on a built-in cot in the room. Not only that, we were given (free of charge) accommodations across the street at Family House where we would occasionally, one at a time, take retreat to shower, wash clothes, cook, make phone calls to update family and friends, etc.

Upon returning home we continued our son on his strict macrobiotic diet and alternative medicines for a time. I don't recall exactly how long. We relaxed his diet long before stopping his medicines. The remaining 10-to 15% of the tumor that was left during surgery, fairly quickly disappeared. That was 17 years ago and our son is a physically beautiful, intelligent, incredibly talented and healthy young man. I think he's a happy person these days too.


Thank you Dr. Michael Edwards. You are a great doctor and a very loving and decent man. We give thanks that you came into our lives and your kindness will not be forgotten.

(Ha, Dr. Edwards is at Stanford now.)



5 comments:

Moi said...

What a beautiful, powerful story, Adrienne.

Thank you.

I AM ANOTHER said...

Thanks Gillette, I was talking to a friend on Saturday to is in the midst of making an important decision about a surgery and I we ended up discussing that fear vs intuition thing that so many of us are often stuck with when making important decisions. Is this my fear, or my intuition. Oh dear, which way to go, which to choose. I told him about this story and encouraged him to trust himself, that he knew which was the right choice and it would come to him. Anyway, the story was up so I decided to write about it. It was a beautiful, powerful experience. Wow, I kinda forget some of the stuff I've been through and then it hits and...like I said, wow.

guma187 said...

http://guma187.blogspot.com/

Greenwoman said...

That's a powerful story Adrienne. Modern medicine has a habit of causing fear in patients with their statistics and arrogance. That's so toxic to health and a lousy way to conduct healthcare.

good for you! I'm deeply glad your son is healthy. *smiles*

I AM ANOTHER said...

Thanks Greenwoman. Fear is a lousy way to live one's life.