In Too Deep

I saw my daughter swimming in the ocean today. She went so far out it looked like she was drifting. Like any parent I balanced my concern against my trust. My trust in her, her self knowledge, her confidence, her judgement. She cried for help so we threw her a lifeline. But I still couldn't tell if she was making her way in, holding steady, or drifting out to sea. Her Mother and I argued about whether we should have let her go out that far, whether the lifeline was enough. Should we go in after her? I hope she's still there.

Lauren and Lauren

By the summer of 1993 Jessica had completed her intensive chemotherapy and was on to her maintenance therapy. She still received chemotherapy, just at a much lower dose which allowed her hair to grow back. It came back streaked with blond and as it got longer it became curly. People used to comment about how lovely her hair was and Sandra and I joked with our friends that for tens of thousands of dollars of chemotherapy, they could have hair like that too.

My hair was growing longer too. I suppose it was my way of rebelling. I was playing in a band with Spencer's nurse Connie and her husband John. Connie on drums, John on guitar and me on bass. I would go to their house twice a week to practice and we used to play gigs all over the area. It was fun, a good distraction from the reality we were faced with.

My girls.

Lauren was born in July at Chestnut Hill Hospital. Sandra's labor with her was more like Jessica's, long. We went in, Sandra did not appear to be progressing, so they sent us out to walk around Chestnut Hill. We eventually went back in and they set Sandra up in one of their new "birthing suites". The doctor delivered Lauren and I asked if I could cut the cord. I didn't get to cut Jessica's (I struggled not to pass out!), but the doctor who delivered Spencer introduced me to the idea. Anyway, this doctor said he wasn't sure as he had set up a "sterile field". Anyone who has witnessed a child being born knows there is not much sterile going on down there, I pointed that out to him and he agreed to let me do it. I got to cut James' umbilical cord too when he was born four years later.

We were still looking for houses and not getting much action on selling our house in Manayunk. We were nervous about bringing Lauren back to the house in Manayunk, but we really didn't have a choice. It was our house and we didn't have the money to rent somewhere else. We spent a lot of time that summer at the shore and Sandra recalls having to go back and forth as her brother Lauren was being hospitalized on a regular basis.

With a Little Help From My Friends

Here is a tribute I wrote to my friends. I wrote it about ten years ago.

"Men are stereotyped as the strong, silent types. You know, not exactly forthcoming with information, bottled up emotions, men of action not words. I am one of the worst in this regard, just ask my wife. But I have experienced the love, compassion and humanity of a group of men that causes my emotions to swell even now, eleven years later.

I moved to my wife Sandra's native Philadelphia shortly after our graduation from college. We had married there and decided to settle. Although I was familiar with the city, I had few friends there. Most of our friends were old college buddies of Sandra's, a great group of people who I bonded with immediately and who remain friends to this day. Our daughter Jessica was in nursery school, we both had good jobs, we had bought our first house and our son Spencer was born. Things couldn't have been better, we were living the American dream. Then Spencer got sick. What we first expected to be chicken pox turned out to be non-Hodgkin's lymphoma. After thirteen months, four chemotherapy protocols, radiation treatment, a struggle for life caused by a nicked artery while installing a broviac catheter and an attempted bone marrow transplant, Spencer died. At 35, I learned what it means to have a broken heart. My wife, my friends and I struggled to make sense of it all and nine months later, Jessica had a malignant tumor removed from her neck and was diagnosed with Acute Lymphocytic Leukemia. Back to Children's Hospital for more chemotherapy, intensive at first, then maintenance therapy. Along with Jessica's medical therapy, Sandra and I received grief counseling and I started to get individual therapy to help me deal with my losses. Not only was my son dead, but now all sense of security and justice.

Sandra was struggling more than me as she lost her Irish twin brother around the same time. She had a core group of girlfriends who listened, comforted, and cushioned her with their presence. Sandra and I have a strong marriage. We comforted each other as best we could, but when you are both suffering, it's hard to lift the spirits of your spouse. And I talked... I talked a lot, to friends and counselors. But it was the action of my friends that saved my faith in humanity and demonstrated love and compassion. Take the suits for instance. I was a young architect and the only suit I owned was the one I was married in. Over a period of weeks, my guy friends were showing up at my house with hand-me-down suits that didn't fit them anymore. Could I use them? Some were hand me downs, others were brand new and at the time I had no idea that this was a coordinated effort. Then there was the shore. Some of our best friends are siblings who owned a shore house together. The Heavens were given our own key and bedroom. We shared seven summers of healing there. And the sporting events I attended with my pals like the Eastern Regional Finals where Duke beat Kentucky 104-103 in overtime (claimed by some to be the greatest college basketball game ever), seeing Michael Jordan and Charles Barkley in a playoff game at the Spectrum and the Phillies playing the Braves in the 1993 National League Championship series on a steamy summer night at the Vet. Memorable events that were predicated with, "we've got an extra ticket, can you make it?". I don't know for sure who initiated these responses from my friends, but I have suspicions. There definitely was a core group of men who made me a part of their family, and they prompted others to action.

We have all moved on since those tragic, yet glorious days. Jessica is cured and is starting to look at colleges. We have two other children, Lauren and James. We are in a new house and new jobs. But most of our friends still live within the metropolitan area. We see each other occasionally, attend important family events and are busy with the daily routine of making money, raising our families and trying to enjoy life. It seems mundane compared to the old days, but creates time for reflection. My friends didn't just listen to me during the most tragic time of my life, they picked me up by the elbows and carried me. For that I will be forever grateful and humbled.

I use the poem "If" by Rudyard Kipling as a compass for my behavior as a man, and when my son James was born I framed a copy and put it in his room. Perhaps it is hokey in this age, maybe the sentiments are a bit simplistic or dated; but it speaks to me. My friends have shown to me that sometimes, actions can speak louder than words."

The Mind and Depression

Circumstances were starting to take their toll. Spencer's death combined with Jessica and Lauren's illnesses were affecting us psychologically. Sandra exercised a lot, running specifically. Spencer's illness was when she started running long distances. She also talked with her girl friends, she discussed her fears and worries while I kept mine more to myself. I had a lot of great friends that kept me occupied. I will write more about them later, but we did not discuss things, we just enjoyed each others company.

After Spencer died I spoke to my doctor about anti-depressants. He said that my depression was situational, caused by Spencer's death, and not chronic. Prozac, Zoloft, and other anti-depressants are for chronic depression. He said if I wanted to try them, I could, he would prescribe me a low dose. I took him up on his offer, but he was right. I found that they just flattened me. They took away the lows, but they took away the highs too. Left me in a neutral zone that I found even worse.

After Jessica got sick and I was back off the anti-depressants, I used to have what I call "Daymares". I was working downtown at 11th and Arch, right at the edge of Chinatown and only blocks from the Reading Terminal Market. I worked on the 11th floor and I remember waiting for the elevator by myself and imagining the elevator doors opening, a man stepping out of the elevator, raising a gun to my head and pulling the trigger. Also, while walking down the street to the market, I would imagine someone coming up behind me and slitting my throat. The image was so real that I gasped for breath. These instances scared me, but they also fascinated me. Why was my mind doing this? What purpose did it serve? The mind and body are beautiful machines and I wondered what mine was doing. We attributed it to a loss of control, a feeling of helplessness.

I thought that it might be helpful to see a psychologist. I was referred to one downtown, a rather attractive woman actually. Our first session was a joint one and Sandra said she preferred I work with a male psychologist. Party pooper. The sessions I had were helpful, if anything it got me to open up. I talked about a lot of things and we even got into some deep stuff about my youth and my relationship with my mother. Deep stuff that made me cry, but not specifically about the kids and their illnesses. Not that I expected anything different. I know the mind is a puzzle and sometimes you just have to push things around to see how they fit. After a while though, I asked him if there was a plan to this therapy. He said there was but didn't elaborate and after a while I really felt there wasn't and stopped going.

Sandra's uncle died and we went to his funeral one sunny Saturday. He was kind of a prickly guy but had a lot of endearing eccentricities. We were sitting in Gladwyne Presbyterian church, the windows were open, and people were getting up and telling these anecdotes about Uncle Bob and I started to cry. I tried my best to keep it to myself but I couldn't stop. Afterward, everyone said that they never realized I was so close to Uncle Bob. I wasn't, my tears were not for him.

Years later, I tried to get Sandra to try therapy. She was very reluctant, but I eventually convinced her. He met with her first, then he wanted to meet with us together. I walked into his office and the walls were covered with paintings of crying clowns. Fucking whack job. He then proceeded to say all sorts of off the wall stuff about Sandra, to which I replied, "do you even know my wife?". We left and I never made her go back.

These days we handle stress by running. We probably drink more than we should, but that seems historically to be a rather universal reprieve from life's trials and tribulations. Something we do our best to keep in control though.

Runnin' with the Devil

Jessica was going through her intensive phase of chemotherapy, so while her treatment was not as intensive as Spencer's, she still got sick, needed blood transfusions, etc. Sandra was pregnant with Lauren, we knew her sex as we had gone through all the high risk pregnancy stuff. We were actively looking for a house. We had no proof that there was anything wrong with our house, but we were not comfortable staying there. We got rid of our water bed because we feared the water was amplifying any waves coming off the electric heater and might affect Lauren in utero. We were paranoid.

Sandra's brother Lauren was getting more ill too. We knew he was dealing with a malignancy of his own, but now it was getting critical. He was spending more and more time in the hospital. Lauren was Sandra's "Irish twin", born with in a year of each other, and her closest sibling.

The staff at CHOP offered us a wish through the Make A Wish foundation. Something they wanted to offer to Spencer, but never got the time. We picked a trip to Orlando. We arrived in Orlando and went to pick up our rental car. I decided at the last minute that we wanted to have a convertible and asked if it was possible. They asked if we had a lot of baggage and we said no, which was a lie. We had bags for the three of us and I had brought my golf clubs. They gave us a Ford Mustang convertible. These were the days when Mustangs were compact cars and there was no trunk room and the back seat was tiny. We made it work though. We jammed the clubs and two bags in the trunk and put the third bag in the back seat with Jessica.

We stayed at Walt Disney World, in a special compound with our own house that had over sized features to make it look like a story book house. Inside though we had a full kitchen, HC accessible bathroom with a roll-in shower and a refrigerator stuffed with snacks. Not that we needed a kitchen, there was a community building where you could get breakfast and lunch, and both lunch and dinner was available through vouchers in the Magic Kingdom or Epcot Center. Characters were all over the place on our compound too. So you didn't have to seek them out in the parks, they came to us. We spent one day each at the Disney resorts, as well as a day each at Universal, SeaWorld and a water park called Wet and Wild which Sandra renamed Wet and Splashy. Jessica wanted to play the games of chance, which Sandra and I hate, but we agreed to play a couple. The last one we played was the one where you throw softballs into the milk cans. We got three balls, one each. Jess missed, I missed, Sandra nails it. To which she exclaims "Oh, shit". We won! Jessica picked this huge, purple Tasmanian Devil. Three feet high and two feet wide. We carried him around for the rest of the day.

As much fun as we had in Orlando, we also wanted to spend a couple of days relaxing too. So we spent our last two days in Cocoa Beach, staying in a hotel on the beach and relaxing in the pool. We had a great drive over there, in the convertible, top down, beautiful day, radio blasting, sunglasses on, Jess and the Tasmanian Devil buckled up in the back seat.

Living with Cancer

Jessica was going to first grade at the John Story Jenks school in Chestnut Hill. It is a public K-8 school in a nice neighborhood. She continued with school, wearing a bandanna to cover her hair loss, and students and teachers alike were supportive. One of her teachers gave her a stuffed ostrich which she named Suzy and this year is the first year Jessica hasn't taken her with her. Suzy is living in Jessica's room upstairs, getting a little to old to travel I assume.

Jessica with her cousins Lexi and Leah. Lexi is Spencer's age.

We put our house on the market. We don't know what caused these malignancies, but we figured it was either genetics or environment and we couldn't change our genetics. It's a shame, we had just taken the equity out of our house so we weren't likely to make any money on the sale. We started looking at neighborhoods to see where we might like to live. We looked at Narberth, Media, Swarthmore, Doylestown, Springfield, Oreland and Glenside. I worked in Center City and Sandra in the Northeast, so we focused on the northern suburbs. Doylestown seemed too far out and we started looking a house in the Springfield, Oreland, Glenside areas.

Jessica continued to go to clinic weekly for check-ups, chemotherapy and the occasional spinal tap. Dr. Bruce remained her oncologist and we started making a new set of friends in the outpatient clinic vs. Spencer's inpatient staff. Jessica would get electrocardiograms occasionally as her chemotherapy had side effects that could affect her heart. Nothing was ever detected. She never fully lost her hair but is was very thin so she continued to wear the bandanna and I am sure the chemo upset her stomach, but in general she was strong. I know we went camping with Connie and John to Land's End State Park and she hiked with us. She also went skiing with us in Vail. In fact, we had a scare there. We put Jess in ski school with a bunch of other young people, Sandra and I had a great day skiing and at the end of the day we went to rendezvous with them and they were delayed due to an injury. Sandra and I fretted that we shouldn't have taken her skiing, or at least shouldn't have put her in ski school. Turned out, it wasn't her. She had a great day skiing too.

Although Jessica's treatments seemed easy compared to Spencer's, we always were on pins and needles. Would she start spiking fevers? Where did that bruise come from? When will the other shoe drop?

Acute Lymphoblastic Leukemia

Dr. Bruce came in the next day and confirmed that Jessica had Acute Lymphoblastic Leukemia (ALL). Leukemia is a cancer in the cells of the blood. There are two types, Acute and Chronic. Acute is characterized by a massive development of immature white blood cells that interfere with and block out mature white blood cells. With Chronic forms, the white blood cells become mature, but they are abnormal and do not function properly. Acute patients are the ones that may exhibit anemia, bruising, bleeding and infections. Without treatment, Acute patients have an average survival of three to five months after diagnosis while Chronic disease is easily controlled with medication and average survival is measured in years rather than months. Of the Acute Leukemias, 80% are adult patients with the Acute Myeloid form, the other 20% have ALL, which is similar to the childhood form of leukemia.

Bruce told us that both Leukemia and Lymphoma are blood born diseases, but that is where the similarity ends. While Spencer's battle was all uphill, Jessica had all the markers for survival. She was female, white, between the ages of 6-9 years old and most importantly, we caught it early. Remember that only a year earlier, she had been screened to be a bone marrow donor and nothing was seen then. Also, we had just been in New Hampshire that summer and had climbed Mt. Major which is a long and grueling hike. Jessica exhibited no signs of fatigue or anemia. She never had any bruising or bleeding. All good news, but we were still reeling from the fact that this was our second child with a malignancy.

The doctors were baffled too. In the coming months we were interviewed extensively, family histories were documented. We were tested for the P-53 gene, which is a marker for family malignancies (negative). They even had a research team from the University of Minnesota come to our house in Manayunk, an old industrial area of Philadelphia, to do testing. They took water and soil samples, set up radon and electromagnetic detectors, and even vacuumed our rugs with this "back to the future" looking vacuum cleaner. The results were inconclusive. We had slightly elevated electromagnetic fields which could be attributed to the old knob and tube wiring in the house, the electric lines and transformer on the street in front of our house, or the train power lines three hundred yards away. All unlikely, or at least minimal contributors. Bottom line, they didn't know and no one was keeping records. For example, they didn't even have a list of cancers, pediatric or otherwise, matched with zip codes that might signal "hot spots" for cancer occurrences. Even Sandra's pregnancy with Lauren was screened as a high risk pregnancy. At that point, we were growing weary of stupid questions and retelling our story.

So Jessica was kept on a chemotherapy of Methotrexate and Prednisone (steroid) was added to force the chemo into all of her body's nooks and crannies. We were back to tag teaming in the hospital, we had a lot of visitors. The day surgery was on a Wednesday, but by Saturday Jessica was sent home on a pass. Her treatment would happen on more of an outpatient basis, she would go to the oncology clinic weekly in the Wood building behind CHOP for examinations and chemotherapy infusions. The plan was for her to receive intensive chemotherapy for six months to push the cancer into remission and then 18 months of maintenance therapy to keep it away. Within two weeks she started having abdominal pains and her hair started falling out.

Not again.

We tried to get on with our lives. That makes it sound like we dusted our hands off, said "well that's over", and moved on. Hardly. We were grieving, attending grief counseling with Mae Page. But we also spent a lot of time at the shore with our friends, we returned to work, we received Spencer's bench from England, set it up and planted the tree in Pretzel Park. With $10,000 in equity that we had built up in our house over the last 4 years we replaced our roof, reworked the eaves to make them historically accurate and had the wide plank wood floors on the first floor sanded and refinished. It was was also time to get on with our family plan. As fall came, Sandra became pregnant. When Spencer was sick, our lives came to a standstill. Now we were starting to do things again, continuing to build our lives together.

Jessica had pointed out to us that she had a bump behind her left ear, at the hairline. We noted it, but did not panic. Every time we brushed her hair we would check it out to see if it changed or grew. At her next checkup we pointed it out to our doctor. He said that it probably was nothing, he said he would give it a 99% probability that it was just a sebaceous cyst. My layman's explanation for this is that sometimes a pore in your skin is  trapped below the surface. It creates oil, which your skin does naturally to keep it soft and supple, but it accumulates under the surface and creates a lump of fat. The doctor said that in light of our history, we could schedule an outpatient surgery to have it removed.

On Wednesday, October 28th, 1992, five months and one day after Spencer died, we went into CHOP's day surgery department to have the lump removed. We went in at 8 am for pre-surgery screening, Jess went into surgery for a quick procedure, and Sandra and I went back to the bench between the atrium and the entry to the double doors to the surgical suite. Spencer's primary nurse on 7 east left Oncology to work in Surgery. To work in Pediatric Oncology takes a special kind of person, it is an understandably difficult job, and not everyone is able to cope. Suzanne was assisting the same surgeon who nicked Spencer's artery for Jessica's procedure. We were not aware of any of this until they both came out of the double doors crying. Jessica's lump was not a sebaceous cyst, it was a tumor and it was malignant. They feared it might be lymphoma.

Sandra's notes: Shocked, despair, "why?". Spencer's primary oncologist Dr. Bruce was paged. He took her to the clinic, gave her a physical, chest x-ray, did blood work, took a bone marrow aspirate and did a spinal tap. She was admitted to 7east and put on Methotrexate. Primary diagnosis: Leukemia.

Why, God or why God?

I was baptized at Wallace Memorial Presbyterian Church in Langley Park, Maryland. We used to go every Sunday when I was younger. Most of the time we went to Sunday school while my mother went to church. Afterwords, we would stop to pick up doughnuts and the Sunday edition of the Washington Post. That was always the treat after church, eating doughnuts and reading the funny papers. One Sunday, we all went to church together. Being a little kid in church, I am sure I squirmed and misbehaved. I was threatened with an ass beating, and I am sure I crossed whatever the qualifying line for that beating was. I still remember that ride home, worried about the approaching spanking all the way, even as we stopped to get doughnuts. When we arrived home, the beating never came. Not that such things didn't happen, just this time it was an idle threat. I still remember that dilemma though, treat or terror? After a while we would be driven to Sunday school by my Mom, in her pajamas, and then picked up afterwards. Eventually we were asked if we still wanted to go, and being kids, the answer was obvious, no. So that ended my time at Wallace Memorial.

As a teenager I was confirmed Episcopalian at Church Farm School or as it is now called; CFS, The School at Church Farm, between Malvern and Exton, PA. It was something we were expected to do, not something I initiated. Although we attended chapel daily and church on Sunday, it was a requirement, not something I wanted to do. By my senior year in high school I was living in Boulder, CO. My girlfriend was christian and a member of Young Life, a group of new testament Christians and the young people's version of the New Life Church. I listened to the discussion, but really was more interested in the fellowship and being with my girl friend.

Between high school and college I was in the Army. I was stationed in Germany and wasn't even close to a war zone, so I had no use for religion.

It wasn't until college that I seriously considered religion and God. I had a design problem in my architecture design class to create a "Place of Meditation" which prompted a lot of philosophical discussion and inspired me to take a survey of world religions class. Although I had a lot of exposure to traditional western Christian religion, I found I was drawn to eastern religions and Zen Buddhism specifically. Miracles, virgin birth, resurrection, the Devil, as well as all the brutality associated with organized western religions left me skeptical and disenfranchised. Peace, being "centered" and of "one mind" were more compelling to me than repentance and confession. I associated with the idea that we were all a part of the energy that is life, we shared that common energy and each of us represented the embodiment of that energy. We are God, and for that reason we must love one another. When we died, that energy continued in others and our bodies return to the earth.

Then Spencer died. And Sandra's brother Lauren died too. And I wanted to believe that they were all together in Heaven. Spencer sitting on the lap of a human, grand-fatherly like God. One big happy family. I found it hard to believe that my son was gone into a nothingness of "energy", into the ether. I wanted to know, to believe, that he was being looked after.

The question of why is one that everyone who experiences a premature loss struggles with. Children aren't supposed to die before their parents! How could this happen? What God would allow these things to happen to an innocent? And some of the stupid comments from religious people were maddening. Part of God's plan? Are you fucking kidding me? What sick fuck makes those kind of plans and why would I worship them?

I don't know and won't pretend to have the answers. I just know there are a lot of people out there who are just a confused as me. I think we just need to try to have compassion for each other, love each other, and try to forgive each other. We all need all the help we can get.

Blow Out the Candle

The next Monday, June 1st, we left for Bermuda. We needed to get away, to decompress from all the activity, all the people and all the stress of the last 13 months. Sandra and I travel together well, we enjoy the same things and run on the same schedule. The resort where we stayed was very nice, we enjoyed touring the island, dark and stormys (rum & ginger beer), sunbathing, snorkeling and played golf together for the first and last time. The weather was beautiful.

A couple of remembrances. This was the first time I understood snorkeling. When I was a kid, you have to remember that the US was taking its garbage three miles out to sea and dumping it. So the water was dark green and almost opaque. Not nearly as clear and aqua as it is today. Now granted, if I took mask and fins to the Jersey Shore today, I probably wouldn't see much either. Being in Bermuda, in a secluded cove was like swimming in a tropical fish tank. Very cool. I also was stopped at the dining room for not having a jacket. So I bought a proper English, double-breasted blue blazer that I wear to this day.

We spent the week there, flew back to Philadelphia, and went to the Jersey Shore for the weekend. We spent almost every weekend that summer at the Jersey Shore. Our dear friends, Mark, Karen and Claudia lost their father. He had a condo in Sarasota, FL and when he died, they sold that place and bought a house in Ventnor, NJ. After Spencer died, they presented us with a key to the house on a Little Mermaid key ring and told us our bedroom was on the third floor across from Mark's. We spent 7 summers there with that family, who are some of our dearest friends to this day. Their love and compassion was instrumental in getting us through one of the most difficult periods of our lives.

By the eighth of June we were back at work. It was comforting to have a place to go, something to do, a way to get lost in something other than our personal difficulties. We started attending meetings at CHOP for grieving parents led by a social worker named Mae Page. Mae was in her late 60's, kinda hippyish, but very compassionate. She also introduced us to Compassionate Friends, a support group for grieving parents. We didn't pursue CF much as neither Sandra nor I were feeling the group therapy thing. That was not the kind of fellowship we were seeking. We did work with Mae Page's groups for a while though. A lot of talking. I remember one of the exercises involved everyone sitting in a circle, lighting a candle, speaking of their child and then having to blow the candle out. It sounds hokey, but the thought of blowing that candle out gives me the shivers even now.

The Little Prince

We sat Shiva for the rest of the week. A lot of our friends are Jewish and that is a beautiful custom, to be surrounded by friends and family at such a vulnerable time. I have started to reference Sandra's ubiquitous Sierra Club calendar, which I probably should have been looking at all along, but wanted to write from memory. Her calendar though has people, places, events, if you know Sandra, you know the power of the Sierra Club calendar. Her notation for Wednesday the 27th. No just one frowny face, but two.

The next two days were sunny and we spent them in the back yard with a lot of our closest friends. The nights I am sure moved inside and involved drinks to numb the pain and help us sleep. I remember that our friend Jeff was dating a woman who stayed with all of us the night of the 28th. She got up the next morning, made breakfast for all of us, did he dishes, and was gone. I don't think we saw much of her after that, but we were amazed at her kindness to complete strangers. Sandra's calendar comes through again, her name was Florence.

Some time in those two days I had to arrange to have Spencer's body picked up at the hospital. I went to the closest funeral home, Koller's on Ridge avenue across from the Acme. I remember going there and being lost. I didn't know what to do. They made the arrangements to pick him up, his body was cremated at West Laurel Hill Cemetery, where Sandra's dad and brother Lauren are buried. They helped me with a simple obituary.

On Saturday we had a memorial service at our house. It was a rainy day and the house was packed with people flowing out onto the front porch. We read poems, Sandra read The Little Bunny:

"Once there was a little bunny who wanted to run away.

So he said to his mother, “I am running away.”

“If you run away,” said his mother, “I will run after you.

For you are my little bunny.”

And we played songs that expressed how we felt; For a Dancer by Jackson Browne, No Frontiers by Mary Black and Song of Seven by Jon Anderson, a song that I once characterized in college as talking of God without ever mentioning the name. Mark read a touching tribute, which included the story of meeting us at Chili's one night and having Spencer run across the parking lot and jump into his arms. Julie read her remembrances as well as passages from The Little Prince.

"One sees clearly only with the heart. What is essential is invisible to the eye."

"It is the time you have lost for your rose that makes your rose so important."

I ordered an authentic teak garden bench from England and had it carved with:

 In Loving Memory, Spencer Webster Heaven
June 25 1989                         May 27 1992

When it arrived weeks later, we placed it in Pretzel Park, so named because the sidewalks crisscross in the shape of a pretzel. It is across from St. Johns cathedral in Manayunk and was a place where Spencer and Jess played as children. Spencer's godparents, Mark and Julie, bought an American Cherry tree and it was planted behind the bench and we mixed his ashes in the soil. We wanted this to be an accessible place, 24 hours a day. A place where life happened, children play and dogs run. We wanted to give back to our community by providing a place of respite. When Sandra expressed concerns that it might get damaged or vandalized, I noted that life does that to all of us, we will make repairs, keep it clean and care for it the best we can. We go back every year between his death and birthdays and scrub the bench clean and treat it with teak oil.

"I'll love you forever / I'll love you for always / As long as I'm living / My baby you'll be."

Spencer's Battle Ends

Spencer was in bone marrow transplant for about a month. He was given high dose chemotherapy and his bone marrow infused, but he struggled. He consistently had a fever and now, after reviewing his autopsy report, it appears he developed pneumonia. Several days before he died he got petechiae all over his body, these are small red dots similar to measles or chicken pox. The doctors told us that they were basically another iteration of the disease and that Spencer would not be cured, the best thing we could do for him now was to make him comfortable.

Spencer was taken to intensive care, where his broviac was removed and then we returned to 7 east. Back to the isolation room we were in when we were first admitted, back when they thought he had chicken pox. Whether or not he had pneumonia in the BMT unit, or if he just developed it in the last days of his life is unclear. It was probably a combination of the two. He probably developed it in BMT and it eventually developed to a critical stage. Most people don't die of their disease, they use all their bodies defenses to fight their disease and then die of something secondarily. Like pneumonia. Dying of pneumonia is similar to drowning slowly. Your lungs fill with fluid and or mucus and it becomes more and more difficult to breathe. It is a very uncomfortable way to die so the best thing to do is to sedate the person heavily to reduce the agitation and anxiety of not being able to breathe.

It took two days for Spencer to die. He had a fever and he was being sedated through an IV. I remember him lying on his stomach, his breathing labored. We would talk to people on the phone but no visitors. I imagine Grandma was taking care of Jessica. She might have come by to visit us, but not in the room. I remember on the afternoon of the second day, I just couldn't stand it any more, I had to go out and walk. I may even have bought cigarettes, I was gone for hours. When I came back, Sandra told me that there were all concerned about me. Afraid I might hurt myself, I said no, I just needed to get away.

Spencer died at 8:50 pm on the 27th of May, 1992. One month shy of his third birthday. I remember Sandra was on the phone with Karen when he stopped breathing. She got off the phone immediately and I remember the feeling of panic I had. Something needed to be done, but there was nothing to do. There were no monitors or alarms. It was very quiet, just his labored breathing, and then it stopped. We pushed the nurse call button and the nurse and doctor came in but like I said, there was nothing to do. He made a last gasp, which I think is when the heart stops and that was it. I felt like my heart stopped, or I wanted it to. It definitely broke and hasn't been the same since.

The nurses and doctors were very sensitive, caring, gentle and loving. I think Connie was the nurse that night and the resident was a female doctor that we hadn't seen before, but she was very good. Soft spoken, patient, accommodating. I think the pastor came by, not for last rites, but just to pay respects. They told us we could hold him if we wanted. I remember us being astonished by that but also very grateful. So we did, we took turns, sitting in the chair, holding him, crying. It seems like we did that for hours. Eventually his body heat faded and he started turning purple on his backside, a result or his blood pooling and not circulating. It was time to let him go, so we did. We left the hospital, numb, feeling lost and alone.

Autologous BMT

It took weeks for Spencer to recover. His kidneys shut down for a while and they had to monitor his metabolism to make sure it stayed in balance. They would check his blood levels every several hours and add potassium or whatever his body needed until his kidneys started doing it again for themselves. He had a drain in his chest for about a week to absorb excess fluids coming off of the wound site and I imagine he felt like he was hit by a truck. The nicked artery was an accident, but it subjected him to additional suffering that was unnecessary.

It also delayed the start of his bone marrow transplant as the patient has to be in top physical condition to endure the rigors of the procedure. Bone marrow transplant is the "nuclear option" of chemo therapies. Basically, the patient is given massive doses of chemotherapy that force the disease into remission by killing the abnormal cells and in the process also kill the normal cells in the bone marrow where they are made. One concern relating to this procedure is the patients immune system is also wiped out. So each patient is quarantined in a special room, actually a series of special rooms connected by a common corridor where family members scrub in. These areas are off the normal corridor on the east side of 7 east. Everyone who is in this area must wear masks, including the patient and only family members and care givers are allowed in this area.

Once the fresh bone marrow is infused, it moves through the bloodstream and sets up shop in the bone marrow where hopefully it starts producing normal cells. Spencer's bone marrow was autologous. His own marrow was harvested when he was in remission, irradiated to destroy any lingering disease and frozen for use later. Although it is called a transplant, it is not really a surgical procedure.

Thoracotomy

If you know how this story ends, then you know that remission was not to last. We must have gone for an outpatient check-up and were told that the disease was back. Not necessarily observable with swollen lymph nodes or something funky with his eye, but by elevated white blood cell counts.

We would now have to go back into the hospital to have a broviac reinserted prior to a bone marrow transplant. I remember that there was a lot of discussion among the medical staff about whether or not this was the prudent approach or whether hospice was a better option. They didn't discuss this with us, we just heard about it. We were confident because he looked and seemed so healthy compared with how he had looked in previous months and I think a lot of the doctors and nurses liked us and loved Spencer and wanted to give him every chance possible. This highlights the need to balance quality of life vs. fighting to the bitter end despite questionable outcomes. Looking back, I don't know if I would do it again, but you don't know how much you don't know and you don't want to make those life and death decisions. Especially with your baby.

We went back into the hospital and scheduled the operation to have the broviac inserted. We met the Surgeon, a tiny woman who looked like somebodies grandmother. She actually had to stand on a footstool to operate. We were assured that she was one of the best in the business despite her diminutive stature. The surgical suites were on the fourth floor, above the hospital entry. The east and west wings were pre and post operative suites, waiting rooms, etc. We couldn't wait in the official waiting room though. We sat on the benches, overlooking the atrium and right outside the doors that lead to the surgical suites.

There is nothing more anxiety producing than sending your child off to the surgical suites. I assume it is the equivalent to sending a child off to war. It doesn't matter if it is a minor surgery like putting tubes in their ears or something major like brain surgery, eventually you have to stop at that door and send them into harm's way with strangers.

It seemed to take forever. We had done this before, but this time it took what seemed like a long time. We were surpised when a doctor came out to talk to us. They took us into a consult room. In the past they would just come out and say he did great and he was recovering nicely. Turns out they accidentally nicked an artery while inserting the catheter. Spencer almost died on the operating table. They didn't just transfuse blood, they literally had to "push" blood through him as they made the repair. In order to do that they had to do a thoracotomy

(viewer discretion advised: http://www.youtube.com/watch?v=EVVltPdABCc)

or "crack his chest". For those who cannot look at such things (myself included), they make an incision in the side of the chest, under the arm, from nipple to shoulder blade. A rib spreader is used to access the heart, find the damage and make the repair. This was devistating to us. When we saw him in the recovery room, he was heavily sedated, on oxygen, and had a drain coming out of his chest. It was heartbreaking to see what this tender soul was being subjected to.

Headed Home

So we were headed home. I remember we were very excited and enthusiastic for the "Homecoming". Although we had been in and out of the hospital, we were leaving this time with the hope that we would only be returning on an outpatient basis.

We had renovated Spencer's room. It was clean and nice, it had new carpet, a new single bed with new Mickey Mouse sheets and comforter (the comforter is still used, I can go upstairs right now and find it on one of the kids' beds), all new and freshly painted drywall. In the renovation we transformed the flat ceiling into a cathedral ceiling that exposed the historic rafters. Put in some funky lighting. It was cool. The nicest room in the house.

We took family photos. I used black and white film and we shot naked ones a'la John Lennon and Yoko Ono (the kids are creeped out when they see these, even though they are tastful and you can't "see" anything) as well as ones where we are fully clothed. I have some of the prints up around the house, others are in a drawer somewhere with the negatives. I had them developed at a quality photo shop downtown that we used to use for our architectural prints and models. Somehow though, they must have used the wrong mixture of chemicals as they have started to deteriorate, which should never happen, particularly w/ black and white. Just like the computer talk, I am dating myself. I haven't looked at the negatives in years though. Theoretically, we should be able to make prints from them.

In remission.

Spencer had really come a long way in less than a year. He was very talkative, had a great personality and was a complex little person. I don't know if he would have been that way anyway or if it was a result of the things he had to endure in his short life thus far. Kids in general at that age mature a lot. They get through the "terrible twos" and at age three seem more mature and cooperative. He loved the Teenage Mutant Ninja Turtles, which was a pretty fantastical (yup, really a word) show. And his favorite movies were Edward Scissorhands (very theatrical) and Dick Tracy (like real life animation). Pretty sophisticated stuff for a pre-schooler. Shit, pretty sophisticated stuff for most adults!

Mission Remission

So we went into the summer, trying different protocols and getting radiation for his eye. The opthamologist, Dr. Terry Young, was a nice woman. She was very sympathetic to Spencer's condition noting that the Lymphoma metastasizing into a two year old boy's eye was very rare. She and Dr. Himelstein co-authored a paper with several other doctors and she presented his case at a national conference. We just found that study on-line, and we found Dr. Young too. She is at Duke University Hospital in North Carolina. We also just got back in touch with Dr. Himelstein. He is in Madison, Wisconsin.

We spent some time at the beach that summer with our friends Mark, Karen, Claudia and their family. We also made other side trips that year. One was to the Brandywine to see the Wyeth museum, the battlefield, Longwood Gardens and the Phillips Mushroom Museum. Another to New Hampshire and Lake Winnepesaukee, Cape May in the winter, hayrides at Halloween and fishing on the Wissahickon. We spent so much time in and out of the the hospital for weeks at a time, that when we were discharged we didn't want to just go home. We also wanted to spend "fun" time together as a family as we knew we might not be able to later.  We wanted to pretend like things were normal.

Spencer and Jess in New Hampshire. His head was so cleanly bald at this time that we could lick pennies and stick them to his head. Who says chemo can't be fun!

By late fall, I think we were into our third or fourth chemotherapy protocol. Each time we switched, they cranked up the juice. His eye was starting to resolve itself and the doctors felt like they were starting to gain traction on the disease. He was heading into remission. The bone marrow transplant team checked each of us, including Jessica, to see if we would be suitable donors if needed. When none of us proved to be suitable donors, they took samples from Spencer for an autologous transplant if necessary. Blood cells are produced in the bone marrow, and a transplant is usually a last resort in the battle against cancer. These were precautionary measures though. Spencer was in remission, his broviac was removed, he was sent home and his hair started to grow back in.

WYSIWYG

As I mentioned earlier, Spencer was on several Chemotherapy protocols. These are cocktails, or mixtures of chemotherapy drugs, that will put the disease into remission and hopefully get rid of it altogether.

There was a round table near the isolation rooms, at the front of the unit, that was called the resident's table. On the wall next to it were bookshelves (pre-internet) of black binders that were full of papers that listed these protocols. They were abstracts. Name of the protocol, who developed it, formulary, target disease, results, and a lot of other stuff we were not qualified to understand. But, late at night when we couldn't sleep, Sandra and I (mostly me) would sit at that table and pour over those books.  All I wanted was information, some control. I said pre-internet, but that wasn't true. This was 1991, so Al Gore had just recently invented it. I had a Dell 316sx (a 386 for those in the know) at home, a modem, and a telephone connection. I used to connect to the Internet via an ISP called Delphi. It was all DOS based then though, so if I wanted to go to the National Cancer Institute I had to type in the exact address. C://nci.gov. Then if I wanted to find the contents of the site I had to type in C://nci.gov/list. It may not sound hard, but back then it was a guessing game, all letters on a black background. You had to get the syntax correct and you didn't know what you were looking for. Literally, a blind maze, not unlike cancer therapy itself. Then a friend gave me a floppy disk with Windows 3.1 on it! This was the first version of Windows. They called it WYSIWYG, What You See Is What You Get. It had icons that made things easier, Netscape and AOL would soon follow.

I can't recall what made the first protocol ineffective. Or even how they figured that out. I assume it was all through blood work. All I know is that Spencer was losing his hair and losing weight. On the other hand he was a growing boy and his speaking was developing. Very contradictory and unsettling. One effect of the new protocols was that it sent his disease to a "place of refuge". This is not uncommon. The chemotherapy is attacking the disease and it will either die or go into hiding. The spine, testicals, ovaries, eyes are all places where disease might "hide". Spencer's went into hiding. In his left eye.

Bath time. The Broviac catheter is coming out of Spencer's chest and his eye is red from radiation therapy.

So in addition to chemotherapy, Spencer now had to also have radiation therapy to his eye. CHOP at that time did not have their own linear accelerator (I think that's what you call a "radiation machine") so we had to go next door to the Hospital of the University of Pennsylvania (HUP). That was weird on several levels. First, the waiting room was full of old people, no kids. So at first it was sad looks, "what a shames", etc. But once Spence engaged with someone, it was interesting and life affirming. He was still a kid. A funny and interesting one at that. That is the one saving grace of pediatric medicine. As difficult as it is to look at and consider sick children, they are WYSIWYG too. No bullshit, no guilt, no deception. If something hurts, they tell you. And they are naturally optimistic, they want to feel better and get better. The second weird thing was the mask. They made a fiberglass mask that he wore over his face to guide the radiation beam. It looked like a death mask. It disturbed me.

Learning to Cope

So it began. I don't really remember the exact sequence of events after that. After all, it was 21 years ago. Just that we were admitted and in isolation. I asked Sandra if his chicken pox ever developed and we both think so. He was on chemotherapy, his swelling went down, they biopsied his lymph node and they made a diagnosis. I know they came up with a chemotherapy protocol, but I don't remember if it was a different one from the original one they gave him. I just remember that we went through several protocols. Can't remember if we went home in between, probably.

Sandra reminded me this morning that her brother Lauren had also been diagnosed with cancer shortly before Spencer was. I had forgotten. Not that he had been diagnosed, but that he was diagnosed so close to Spencer. It was a tough time, a lot was going on. Even now, thinking back and trying to remember these things is difficult and emotional, but probably cathartic. Emotionally, I don't really know how we coped, we just did. We had a daughter (and son) we had to take care of, we had jobs, we just did our best and took it day to day. Many people have said to us, "I don't know how you did it". Like we had a choice? We heard rumors of parents throwing themselves off the atrium and killing themselves. In fact, they did enclose the balconies on the atrium with glass for just that reason.

Up to this point, we really didn' know what all we were about to deal with. I just comes, one layer at a time. I know Sandra cried, I cried too but not as much. Sandra talked a lot about things, me not as much. I remember taking solace in being able to go to work, put on my headphones and draw. In my own little world, where I at least felt like I had some control. I am sure Sandra called friends, talked to friends, wrote cards and letters. We have them all, I don't look at them. Too painful. Maybe she does, but by now even she limits her exposure. I would get angry. I remember freaking out at the security guards at CHOP. For stupid things, they were just doing their job but my patience was short. Once, we were stopped on 34th street. They were doing construction and I got pissed at someone, one of the construction workers I believe, the guy directing traffic. I got so angry, I put the parking brake on the car and started getting out to kick the guy's ass when Jessica started freaking out and crying. She didn't want me to leave the car. She was probably 5, I was stupid. I got back in and drove off.

Summer was coming, we were coming up to two months in, and Spencer celebrated his second birthday. Not many people could come as he was immuno-compromised. It was sad and so very different from his first birthday.

Spencer's Second Birthday Party

Our New Second Home

They moved us to the Oncology ward in 7 east. Back then, Childrens Hospital was a big, brown, mechanistic building. It was eight stories tall and U shaped in plan. The bottom of the U was the front entrance of the building, facing 34 th street. The two arms of the U were the inpatient wings, east and west. In between was a 7 story atrium. Our first room on 7 east was in an isolation room in the northeast corner of the hospital. It has an ante-room with scrub sinks and two rooms with special hepa-filter ventilation. Spencer was put in there because they still thought he was going to get chicken pox.

South of the isolation rooms was another isolation area with 4 Bone Marrow Transplant (BMT) rooms. These had even stricter protocols on who could enter, what you had to wear, scrubbing, etc. Beyond these were regular rooms. The Isolation and BMT rooms were singles, most of the others were doubles. In the center was the nurses station, residents area, procedure rooms and other support functions. The typical room would have a bathroom when you first entered the room (similar to a hotel, only everything was handicapped accessible) then the two beds or cribs depending on the age and finally a built in couch at the far end that doubled as a bed. The east and south rooms looked out onto the old Civic Center, the west rooms looked out onto the atrium.

In addition to the couch, there were "easy" chairs that fold out flat. That way, one patient's parent slept on the couch and the other patient's parent on the fold out chair. Patient's parents were discouraged from both sleeping over as quarters could be cramped and also to give each of them some time off. Of course, some children didn't see their parents much at all. That was sad. A lot of people were from out of town and either stayed in the parents resource room on the 8th floor or at the Ronald McDonald house.

We were lucky in that we rarely had a roomate. I don't know if that was because of his lowered immune system (chemo will do that to you), or if it was because everyone liked us and worked to get us better accomodations. Still, since we had Jessica to take care of and also since we were both working, Sandra and I took turns. Sleep at home, take Jess to daycare, then to work, pick Jess up, go to the hospital and eat dinner together then spend the night while the other went home with Jessica. Rinse and repeat.

Our doctor was a Hemotology/Oncology resident from New York named Bruce Himelstein. He was a great guy and eventually became a friend. Actually, a lot of the people there became our friends. We went to the wedding of our primary (weekday) nurse, Suzanne. I played in a band with our secondary (weekend) nurse, Connie and her husband, John. Connie is still a friend to this day. And the rest of the staff was really pleasant and comforting. In light of the situations each of them had to face daily, it really is a wonder. With McDonald's on the ground floor, the bar at the Sheraton across the street, and Penn's campus two blocks away, we had all the accomodations we would need for the weeks at at time we would spend at the Children's Hospital of Philadlephia.

Non-Hodgkins Lymphoma is not a children's disease.

Spencer was admitted to 7 West. Coincidentally, that floor is now the Neurology floor where Lauren was monitored and recovered from her brain surgery. Back then though, it was a general admission wing, but directly across from 7 East, the Oncology wing. Spencer's lymph nodes were swollen around his head, neck and chest. The doctors wanted to biopsy one of them, but they were hesitant to sedate him as they felt his breathing might be compromised. To reduce the swelling, they put him on chemotherapy.

Spencer's First Birthday

OK, so as I/we embark on this mission to relive this part of our lives, we are now digging through and searching for reams of information, letters, diaries and reference books to recall what exactly he was on and the sequence of events. Some of the most widely used chemotherapies at the time included Cytoxan, Adriamycin, Oncovin, Methotrexate and usually a steroid like Prednisone. If we find the exact information we will make corrections, but most likely he was put on one or more of these drugs.

After several days on Chemotherapy they surgically biopsied one of his lymph nodes and installed a broviac catheter. The broviac was inserted on the left side of his chest and allows them to directly administer anything they would put through an IV, but without having to stick the child with a needle. The diagnosis: Non-Hodgkins, KI-1 Lymphoma, Stage 3.

Lymphomas in general are cancers that arise from the lymphoid system, a complex network of cells and channels that run throughout the body as a basic part of our immune system. British physician Thomas Hodgkin first diagnosed lymphoma in 1832. His lymphoma behaved in a very predictable way and has come to be called Hodgkins Disease. All other forms are called Non-Hodgkins. I believe KI-1 refers to the fact that it is an intermediate-grade, diffuse mixed small cell and large cell lymphoma. Stage 3 refers to the fact that his disease was involved on both sides of the diaphragm and not just localized on one side of the body and sometimes can also involve an organ or site that is not part of the lympatic system. Survival rates for stages 1 & 2 are 70 - 90%, stages 3 & 4 are 40 - 50%. Non-Hodgkins Lymphoma is not a children's disease.

Paradise Lost

Sandra, Jessica and I moved from DC, back to Sandra's native Philadelphia. We bought our first house on Shurs Lane in Manayunk in the Fall of 1987. Manayunk was an up and coming area outside of Philadelphia. It is hilly and rises up from the banks of the Schuylkill River. Historically, it was a big textile manufacturing area. It has a lot of brick rowhouses, old stone mill buildings and a canal. In many ways, it reminded me of a rougher version of Georgetown. We had dreams of the area becoming a Georgetown one day. Our single house on a double wide lot was built of Wissahickon Schist in the late 1800's and had six bedrooms on three stories. A great place to raise a family.

I was working as an architect downtown, Sandra was a guidance counselor at The Bridge and Jessica was taken care of at Busy Day Daycare. Their motto, "A busy day is a happy day"! Life was pretty good. Our first house, good jobs, growing family. Spencer was born in June 1989 at Roxborough Hospital. Unlike Jessica's birth, which took 36 hours, Spencer's labor and delivery was quick and easy. We attribute that to the fact that the day before Sandra and I walked the hills of Manayunk, observing the Core States Bike Race. I think that helped move things along.

Chris 32, Sandra 30, Jessica 3, Spencer 2 mos

Spencer was a healthy and happy little boy. One of my co-workers introduced me to the term "Perfect Family". Father, Mother and one child of each sex. Spencer was taken care of during the day by a woman named Cindy, she and her husband Jack took care of 4-5 kids in their house which was about a mile from ours and backed up on the Wissahickon Creek. A couple of months before Spencer's second birthday, he came down with a fever. Cindy still took care of him, it was spring time and some of the other kids were sick too. After three days with a fever we took him to our GP and pediatrician, Harry. He examined him and we mentioned that one of the other kids had just developed chicken pox. He said that Spencer was probably going to get them too and that we should come back once they started to show. At this point, we were keeping Spencer at home and Sandra and I were tag teaming days off to take care of him. We noticed that when we picked him up under his arms, Spencer cried and was uncomfortable. Feeling up into his armpits, we noticed that they were lumpy. Like he had hard peas under the skin in his armpits. When we told him about this, Harry said to bring him in again. Sandra's brother Lauren was living with us at the time and offered to drive me to the Doctor's as Sandra had our only car at work. Upon examination, Harry said that he wasn't sure what it was, but said that we should go over to Children's Hospital immediately to have it checked out.

I kept Sandra informed of what was going on and Lauren drove me over to Children's Hospital of Philadelphia (CHOP). In the emergency room, they looked him over and asked a lot of questions. Particularly about if we had pets, a cat perhaps? No, no pets. Could he have had exposure to pets? Been exposed to someones cat box? I don't think so. Well, they said, we are not sure, but we are going to need to admit him for more testing. If they had to guess, they would say it is either something like "cat scratch fever" or it could be a malignancy. I felt like the doctor had just kicked me in the stomach.