Marie-Pierre's Story: A Mother's Love, a Living Legacy

To commemorate Marie-Pierre's memory on her anniversary, I have written a story about her inspirational experience with motherhood and illness, which has been published on the website of the American Brain Tumor Association. Here is the link to this story:

http://hope.abta.org/site/News2?page=NewsArticle&id=7009&security=1&news_iv_ctrl=1442

The original, unedited version of the story follows here:


We had a great life. I remember the moment that it all changed.

It was Monday evening, Jan. 19, 2004, when the MRI technicians prevented us from leaving the hospital. We had been waiting far too long after my wife’s test, and I told them enough was enough. As I started to walk out of the waiting room, they actually moved between us and the door. That was the moment. I knew it was bad. I didn’t know yet how bad.

They knew, but couldn’t tell us because they hadn’t yet been able to contact our primary doctor for authorization to admit her. He had sent us there for a stet MRI of the brain after examining my wife earlier in the day. She had started having headaches and other symptoms about 10 days earlier. At first, we thought there must be a problem with her pregnancy. She was about three months. By the time we got to the MRI, I had begun to suspect a brain tumor, but I was counting on being wrong. As I found out that evening, I wasn’t. It was the worst night of our lives.

After surgery in South Florida, where we lived, and a biopsy that was sent to neurosurgeons in Boston for a second opinion, what we had hoped was a meningioma was confirmed to be glioblastoma multiforme. We hadn’t even told anyone we were expecting our first child yet, and suddenly my wife was handed a virtual death sentence. She was 39.

***

Marie-Pierre wanted to see the world. Still in her teens, she set out to see it. Against the conventions of her rural town in deep France, she left the security of her big family, and, over the next 20 years, she saw a lot of it. Her passion became her career, and she eventually became a tourism professional working with various companies in Paris and traveling extensively: Thailand, Guadeloupe, Greece, Indonesia, Morocco, Sweden. She even took a group to China as far back as 1993.

She evolved into the prototypical career woman – dedicated, efficient, highly organized, confident, exacting. Never married. Never wanted children. But she was not all work. She was fun-loving, too, with a great smile and big, bright eyes that lit up an engaging, expressive face.
In the late ’90s, she began working in the U.S., where I met her. Eventually, we fell for each other and embarked on a 10-year voyage of love that could not have been more beautiful or less predictable. In each other, we each had found the love of our life – and we lived like it.

We had a great life.

***

I remember the exact moment it all changed again. It was the moment Marie-Pierre made the decision about her pregnancy.

Following her recovery from surgery, that decision was staring us in the face. She could not do chemo while pregnant. Some doctors strongly urged her to terminate so she could begin treatment immediately. Marie-Pierre was undecided. I wanted to do whatever we could to keep her alive. And, abortion made sense. After all, I was already 56. We talked to a priest. Surely, we thought, the Church would agree. But even in our dire situation, he said, abortion was not condoned.

We were lost. In the past months, we had worked hard to accept our imminent parenthood and the change it would bring to our idyllic life. Now we had to confront that decision again, and this time, it was not only the child’s life that was at stake.

The road to that decision began on what became a momentous Sunday afternoon in early February, as we drove home from meeting a woman who had endured treatment for the same kind tumor for several months. She was doing well, we were told, but it didn’t seem so to us. She was weak, incapacitated, confused and puffy-faced from the steroids. Afterward, Marie-Pierre and I were shaken. For the first time, we had looked our future in the eye, and we both felt it didn’t look like much of a future at all. We talked about how almost nobody gets out alive with this cancer, and usually it doesn’t take long. Our only way through this appeared to be our faith in God, and that faith was telling us that an abortion might disconnect us from Him. Our only hope seemed to be keeping that connection.

A couple of days later, Marie-Pierre decided to keep her baby. That was the moment everything changed again ... for the better – unimaginably better. She said it then for the first of many times: "This baby means life for me." Her pregnancy wasn’t planned, but – as we came to understand – it was destined.

***

The next few months were miraculous. Marie-Pierre was about to begin radiation of the brain, which doctors assured us would only pose limited risks to the fetus because her preganancy had passed the crucial three-month developmental stage. We were not entirely convinced, but we felt we had to do something. Then a friend in Phoenix told us he'd heard of a spiritual healer there who seemed to be the real thing, and we took advantage of a lag in the radiation setup process, made a leap of faith and flew to Phoenix. Speaking with the healer on the phone had been the first time Marie-Pierre had felt any peace since this ordeal had begun, and after his "energy" session with her, her peacefulness was magnified. He told us that he believed that God had given us a miracle, that the cancer was gone, or at least deactivated, and that the baby was fine. He urged us to have this verified by medical tests. Overnight, my wife's condition improved visibly. She had regained her energy and completely looked and sounded like herself for the first time since she got sick over a month earlier. We were not sure what had happened, but it was clear that something had. At the very least, a glimmer of light had pierced our darkness and a seed of hope had sprouted.

The developments that followed our return home amazed us. The cancer center's chief of radio-oncology, who was treating Marie-Pierre, was an elderly, sympathetic man of faith, yet he was understandably skeptical when we told him what had transpired and asked him to do another MRI before starting radiation. He said we should start treatment immediately but reluctantly agreed to one more test first. Two days later he gave us the good news: The MRI showed that the residual tumor now appeared about 25% smaller. "Apparently what happened in Phoenix helped," he said. Our neuro-oncologist was not persuaded, however, saying that the MRI merely reflected the normal healing of post-surgical abnormalities. The radio-oncologist and his associates, though, continued to be encouraged by the results of followup MRIs, which eventually showed no evidence of cancer, they said. The chief radio-oncologist, who only weeks earlier had urged us to start treatment immediately, finally came to the decision that it was not necessary. Ultimately, Marie-Pierre was able to complete her pregnancy without treatment. Seeing the physical toll that radiation would take on her months later, we couldn't help but believe that, in some way, our child had beeen spared.

***

During her pregnancy, a blissful transformation began to take shape in Marie-Pierre that would eventually flower into a new woman. She changed her lifestyle and diet, starving the tumor of the fat and sugar it craved. She committed herself to holistic approaches. Her appearance changed as she slimmed down – even in pregnancy. She was vibrant. Despite the various medical concerns, her pregnancy was happier and healthier than anyone could have expected. She chose to give birth naturally, and she was blessed with a relatively short, easy labor and a peaceful, uneventful delivery. Uneventful except for the fact that her little boy was born two weeks early on – of all days – the French holiday known as Bastille Day. We named him Pierre.

In retelling our story, I often heard the response, "You get the child you deserve." That certainly proved to be true for Marie-Pierre. And, he was the child we needed. His only difficulty was a case of jaundice, which cleared up in a couple of weeks. After three months, he began sleeping through the night, usually for about 12 hours (not to mention a two-hour nap), which continued until he was 3. It's hard to overestimate how important this was for a mother fighting a malignant brain tumor. But even more than being easy, he was a happy baby. I wrote a song for him on his first birthday, aptly titled "Happy to Be Alive." He was our angel.

Sure, there were a lot of terribly difficult times. The first was when her tumor recurred six weeks after his birth and we had to leave him for 10 days to travel to a brain tumor center for her second surgery. Over the next four years, she had to endure those six weeks of radiation, a third brain surgery that left her temporarily and partially paralyzed, cycle after cycle of different chemotherapies and clinical trials, various other "minor" complications, dozens of MRIs and PET scans, countless alternative treatments and supplements and what seems like hundreds of doctor and hospital visits, many of which required traveling hundreds of miles from home. And, of course, her weakened condition forced her to share her little boy with a succession of nannies and miss out on a lot of the fun – though she struggled through the nausea, fatigue and pain to care for and enjoy Pierre as much as she could.

But despite these difficulties, there were always good times, and thankfully there were more of them than not. Whether they were just a few moments during a bad day or a six-month stretch of mostly good days, they gave Marie-Pierre (and us) that precious gift: normalcy – the kind of abnormally happy normalcy that sharing your life with your child can bring. And Marie-Pierre, the lifelong career woman who never wanted a child, remade herself into the kind of natural mother that I'm sure surprised even her: constantly baby-talking to her little boy in a lilting French-English sing-song; beaming as she cradled him or simply admired him; smiling sublimely as she showed him off to family and friends, or a stranger who would stop to say he was so cute; in short, learning to care about all the things that would make her the best mother she could be. And so she got to do just about all the things that come with raising a child and introducing him to the wonder of life – and she got to experience all the love, happiness and fulfillment that come with it. Being a mother who couldn't afford to take life for granted, she no doubt experienced its simple pleasures more intensely than most. That, I think, is poignantly reflected not only in the photo that accompanies this story, but also in this email that she sent to her family in France:

"Today it's been 3 years since my first surgery... January 26, 2004! If we had listened to the well-meaning doctors at that time, Pierre would not be here, and they gave me 2 years of survival... To celebrate our lives, Pierre and I spend the morning in the park. The weather was fantastic and we had a lot of fun. Back at home, before his nap, Pierre played with his hats."

To say that Pierre was her pride and joy would not be using the phrase casually – rather, it truly defined him. The coos, the cuddling, the kisses, the smiles, the feeding, the babbling, the laughter, the shrieks, the crawling, the steps, the spinning, the falling down – just the sight of her little boy sitting in a big jet plane seat on a trip to France – all of it brought her laughter, and I'm sure she never laughed so much in her life – even before she became terminally ill.

Oh, yes, there it is again -- the terminally ill part. There was so much good, normal time that you could almost forget that part. But it was always there, and yet she was able to live under that cloud with true joyfulness. Her faith gave her the inspiration to give her little boy life, but it was her little boy who gave her the inspiration to fight for and enjoy her own. As it turned out, it wasn't a long life, and I don't know if I'll ever be able to make sense of that, or if the path we took was the right one. But what I do know is that in those nearly five years, she did the best with her life that anyone can do -- she passed it on. And, for a precious time, her little boy gave it all back to her, the best life that she could have ever had.