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The Free Fall: Tom’s Story

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I love how music enhances so much in our lives. Favorite tunes streaming from earbuds motivate me through workouts. Housework is bearable when I turn on the stereo. And many a decent TV show or movie is made that much better by a well thought-out soundtrack. Something about the pairing of song and scene makes the movie and the music that much more memorable.

One of those pairings that I connect with is Tom Petty’s “Free Fallin’” from Jerry Maguire. This song has enough merit on its own with the rolling melody and catchy lyrics, but the movie elevated it even further. Jerry (Tom Cruise) has just left a positive meeting with a nearly-signed client, and he’s clearly on top of the world. While driving, he hears Petty’s song on his car radio and as he beats out a joyous tattoo on his steering wheel, it’s hard not to get caught up in his high spirits. And from then on, whenever I heard that song, I felt the same. Pretty damn good.

A year ago this month, I had a very similar “Jerry Maguire” moment. On a beautiful and unseasonably warm October Friday, I was driving to New Hampshire’s White Mountains with my then 12-year-old son, Tom. My husband and older son were a few minutes ahead of us on the highway. We were all going to an annual family reunion for the long Columbus Day weekend and with the 78º weather I was able to put the top down on my convertible. It was a glorious afternoon.

As we made our way north on Rt. 93, I alternated between Celtic punk, folk, gospel, and hip-hop CDs. But before I lost reception in the mountains, I had on good old FM radio. When Petty’s song came on, it was just what I needed to put some nagging health issues out of my mind. Earlier that week, my Tom had not been feeling that great. Nothing horrible, fatigue and a mildly upset stomach mostly. We chalked it up to a new school schedule and a new paper route. And one day when he was at his most tired, I swore his eyes looked yellowish. I’m always one to over-worry so I tried to not get too worked up.

But we were on vacation! We were looking forward to seeing the extended family, and the beautiful foliage. And it really was a nice weekend. So it hit me, as I drummed on my steering wheel, and sang along with Petty, laughing at the strange looks my son gave me, it was one of those moments that made you feel it can’t get any better than this.

And as you might guess, it got worse.

Tom continued feeling so-so. By the following Wednesday I followed the school nurse’s advice and brought him to his pediatrician. Dr. D. took one look at his urine and ordered blood labs to be done at the hospital next door, mentioning possible diagnoses of hepatitis. Later that evening the doctor called us at home with a referral to a liver specialist at Boston’s Children’s Hospital. Two days later – exactly a week after our joyful road trip – Tom was lying in the dark, with an ultrasound technician and a radiologist frowning at a monitor, measuring dark spots on his liver.

I never realized I could hold my breath for so long.

Tom takes after me, he’s a worrier. After a morning of meeting with doctors, and the afternoon ultrasound, he had so many questions. My husband Dave and I tried to keep upbeat and positive as we stopped at a Bickford’s restaurant on our way home to feed poor Tom, who could finally end his pre-test fasting. But before the waitress even came to the table, my cell phone rang. It was Dr. J., the specialist we saw earlier that day. So far, testing indicated… well, more testing.

My brain stopped working and I asked her to please, please send me an email to repeat everything she just told me.

Tom was scheduled for an ERCP under general anesthesia the following Thursday. The procedure lasted around three hours, maybe more. He came through fine, but because his main bile duct was so scarred, the doctor had a hard time seeing what he needed to see. Tom and I stayed overnight and the next day he had a liver biopsy.

It’s hard to replicate all the medical conversations and consultations that happened over the next few days, especially because the doctors weren’t entirely sure what they – and Tom – were up against. Either his condition was a congenital one, or it was more along the lines of PSC, a progressive liver disease. Either way, Tom’s bile was backing up, his ducts became infected, and he needed surgery.

No one wanted to hear that, especially Tom. The Monday after his procedures he came home from school and we had to tell him the news. We cried a little together. We had hoped the worst was behind us, but now he was going back into Children’s Hospital, and would probably be there for a week. Three days later, on the morning of October 25, Tom held court with a panel of anesthesiologists to determine whether the root beer scented mask was better then the mint. This was just one of the many questions important to him, and every nurse and doctor did their best to answer him.

Dave and I managed to hold our tears until he was wheeled into surgery. And now Tom Petty’s words held a different meaning:

We were free falling – out into nothing.

For the last three weeks we had been just listening, asking questions, nodding our heads, signing permission forms, signing release forms. We were cheerful, even overly, sickeningly cheerful with Tom. My laptop got a workout as I clicked and typed, working my way through websites – The Mayo Clinic, Children’s Hospital, WebMD, The American Liver Foundation – convincing myself that everything was going to be fine, making sure to hurriedly shut the computer top if Tom walked in the room. Our older son had his questions too; we had a hard time answering them, but we were just trying to keep our lives going, trying to keep acting and feeling normal.

Until Tommy was brought into the OR, where he would spend the next seven and a half hours.

And this free fall — this unexpected, bizarre, tumbling sensation that our lives were no longer recognizable — was intensified as the World Series had begun the night before, just a few blocks away. The thrill of hearing the jet flyover both live and on TV was subdued by the circumstances for our nearly front row seats.

The surgery was successful; the non-functioning bile duct tree was removed, along with his gall bladder. His intestine was attached directly to his liver, and the bile flowed properly. From a pure plumbing aspect, it was all good. But cysts still remained on or in the liver; not everything could be removed.

And from a medical view, his recovery was smooth. No infections, nothing unusual. But from a personal view, the next week was the most difficult, watching our son with an NG tube in his nose, an epidural needle in his back, an IV in one hand, another IV line in a foot, a Foley catheter in his bladder, a JP tube in his stomach — and a morphine button. No one wants to see their child have a reason to use a morphine button.

All the concerns, all the vague and not so vague worries that had been put on hold now collided and crashed around in my head. I was horrified, actually, to see him lying there. Although grateful for his visitors, including our pastor, who brought a teddy bear, I was miserable as I scheduled these visits. And this misery pushed up against guilt. Here we were, in a world famous pediatric hospital, and there had to have been so many families who were facing much less certain futures than ours. I had to wonder how many parents walked in with their child, and ended up saying a premature – and permanent – goodbye. I knew we were blessed to be able to watch him heal, and relatively quickly, but the stress of this time was tough. And the sleep deprivation was ever-present. My husband and I took turns spending every night in the hospital.

The day before Halloween I was walking into the hospital with my name tag, overnight bag, and laptop. I looked up at the huge building, and the dread in my heart was building. I had begun to hate this place. I hated the Au Bon Pain with its great coffee, I hated the CVS drugstore, nestled conveniently next to the gift shop, and I hated the elevators. By now, Tom had his NG tube removed, and also the epidural line, so he was eating small meals. He was also anxious and depressed, partially from the realization that he’d not be home for the usual Halloween fun.

The staff was aware of his gloomy mood, and the next day they did their best to cheer him up. They sent in a caricaturist who did an amazing drawing of Tom as “Master Chief”, the protagonist from the video game Halo. They sent in a chirpy and cheerful aide who asked Tom to sign a matted team photo that was going to be given to the Red Sox from the kids at Children’s. They sent another aide who asked Tom to come to the activity room and decorate Halloween cookies. The nurses gave Tom a costume (hard hat and reflective vest) so he could trick-or-treat in his wheelchair around the hospital.

His mood lifted somewhat, which was a relief. But by the time Dave came to take his turn, I was wrung out. Leaving Boston, I cried while stuck on the Zakim Bridge in rush hour traffic. This was one of my low points during the whole ordeal. Thankfully, Tom was released two days later. He was wobbly and still had a JP drain attached to his belly – but he was home.

I’d love to be able to say that the story ended here. Oh, things improved, but very slowly. By winter, the doctor had ordered more tests. Tom was slow to gain weight, and there was concern about bowel disease, which often accompanies his particular liver issues. After an upper GI with small bowel follow-through, a colonoscopy, and an endoscopy, Tom’s intestinal tract was pronounced clean. However, the endoscopy revealed esophageal varices (varicose veins in the esophagus), which were caused from portal hypertension which can occur when the liver is diseased. In some instances, the bulging veins can rupture and the patient can bleed out quickly. Great. Just what any over-anxious parent needs to hear. Although I was glad that Tom recovered from his scopes with gusto, asking to go to our favorite breakfast place on the way home, inside I had new worries. But his doctor was quick to assure us that his funky veins were quite small, and not at a dangerous stage.

The spring brought another ultrasound, the least invasive of most of what he’d already been through, yet it was something I surprisingly dreaded. It was a weird sense of déjà vu, sitting in the dark while the technician, having finished the test, assured us that we could go, “right after she showed the results to the radiologist.” While this is the standard practice after any X-ray, mammogram, or ultrasound, it was unnerving for the three of us. This was the same scene, six months previous, sitting and waiting. We equated the longer the wait with the worst news. And just like last time, the technician did not return alone.

But this time, Tom broke the silence quickly. Point blank he asked the doctor, “Is it normal?” The radiologist paused for a brief moment, and then smiled at Tom’s candor. And he answered him just as directly, “No. But there are no new surprises.”

It’s been a year now, and in a few days we’ll return to Boston for another visit with Dr. J. We’re hoping for a clearer picture of what Tom can expect, not just for the next year, but for the rest of his life. We’d like to be able to rule out the need for a liver transplant in his future, but we don’t have that peace of mind yet.

Our friends and family have asked how we managed to cope with the whole thing. I don’t think anyone ever consciously “copes.” It’s a matter of just doing what is in front of you, and trying to land on your feet at the end of the free fall.

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About MaryKay

  • http://ethnicindo.blogspot.com Basfito

    I am from Indonesia. I also incidental music. Indonesia has its own original music, the type of music as music Dangerman
    from India. Dangerman never hear music?

  • http://www.maskedmoviesnobs.com El Bicho

    Mary, wonderful piece. Even already knowing pieces of the story, I was still moved by it and your writing. You should have saved this for Wednesday :P

    btw, do you know where I can get some incidental world music?

  • http://dracutweblog.blogspot.com Mary K. Williams

    Thanks G. I appreciate your words. As far as the incidental world music, I’m pretty clueless?

  • Mitch

    Great piece, Mary. My interest was split in half. Part of me was thinking about the compelling story of your son, Tom, and what you all went through. Hope he continues to improve and stay healthy. I also hope the full range of emotions you went through (the anxiety and worry and love and dedication) helps the three of you remain close throughout your entire lives.

    Your piece also made me think of some of the special or notable moments in my life that were accompanied by a “soundtrack.” I’ll never forget that Christmas Day 15 years ago when my now 19 year old daughter and I slow danced to the closing song of her new Beauty and the Beast video, my eyes filled with tears. Or those times when me and my 3 kids would crank up the stereo and dance wildly to Stevie Ray Vaughn or The Pretenders in the den. Or the times when we would drive out to the airport in the evening to give Mom a break and sit and watch planes take off and land while listening to Paul Simon, James Taylor, and Fleetwood Mac (which to this day we refer to as “Airport Music”). Or last spring when my 15 year old daughter heard “Hey There, Delilah” on the radio on the way to school and I got to hear her in a moment of weakness actually sing in her beautiful voice. And so many others….thanks for stirring up those memories.

  • Dr. Juliann Mitchell, PhD

    Mary,
    Thanks for sharing a sliver of what you and your family have gone through in the last year. You have been through so much. Living with uncertainty is challenging and when it is your child it makes everything so much more intense. Because we as parents want to take away their pain, and sadness, and disappointments, and wish we could trade places with them which we would do in an instant. I wish happiness, health, and healing for you and your family

  • http://themidnightcafe.org Mat Brewster

    Wow. That was awesome Mary (I mean the writing and the story, not the horrible ordeal.) I, too, knew most of that story but to hear it all in one take…well my heart goes out to you. You and your family have been in my thoughts for some time, but now even more so.

  • http://dracutweblog.blogspot.com Mary K. Williams

    Mitch: Thanks, as always, for your support. And a big thank you for sharing your special memories.

    Dr. Juliann – I appreciate you taking the time to read here. There were times when things were tough, when we tried to calm Tom’s fears, limit his anxiety. But he was also a source of strength as well. Today is the day we go back for another visit at the hospital. I have no doubts that Tom will ask all sorts of questions and press for answers. He’s good like that. (drives me crazy when has the same sort of stubborn streak in getting a new video game) : )

    And Sir Mat – If I didn’t say it then, I appreciate the support of my Mondo Men. I love you guys! xo

  • Dr. Juliann Mitchell, PhD

    Mary,

    Let us know how everything went at the appointment today.

    Juliann

  • George Jamieson

    Mary,
    Tom Nealon and I talked about you and your family yesterday and today he sent an email that I’m sure you’ve seen with a brief summary of what you’ve experienced. I’m on the national board of the Liver Foundation with Tom and I’m pretty much aware of his committment to the Foundation, to Zack and to raising funds to try to solve the mysteries of liver diseases.

    I read his email, as I told him, with chilling memories of our own experience returning after perhaps many years of unconciously trying to put them on the back shelf. We live in NH now but were in Massachusetts when our son went through a similar experience. His transplant took place in Pittsburgh because he was dying and a liver was available there.

    Are we lucky? You bet! HIs transplant took place when he was nine. He is now 33 and living a relatively normal life, medication free. If we get to meet, and I hope we do, I can give you a story of hope and the possibility of a great future for Tom.

    God Bless,

    George Jamieson