DAVID'S STORY!

By Elizabeth A. Richter

Special Note: Recently, I was asked to write about my memories of the Prouty Garden at Boston Children's Hospital in connection to my  little brother, David's, treatment there for what was essentially a form of incurable cancer.  The Prouty Garden is a beautiful spiritually healing garden located at the center of Boston Children's which is currently at risk of being demolished.  I am now sharing this essay with Divorce in Connecticut readers so that it is clear that when Divorce in Connecticut publishes articles in support of Justina Pelletier, Cassandra C., and little Jaxon that this support arises from a very personal standpoint.  As a writer on behalf of Divorce in Connecticut with considerable input into its editorial content, my opinions in regard to medical rights comes from the position of having walked that walk myself personally so I know exactly what kids are going through when they are mistreated by the medical system.  This is not to say David was mistreated, but merely to say that I know what is at stake and I know exactly when hospitals, medical personnel, DCF and attorneys aren't providing the full story and are acting contrary to their professional ethics.

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When I was around 8, and my little brother, David, was 4 I used to get really jealous of him because my parents would let him drink coca cola whenever he wanted.  Also, he didn’t have to eat his first course before he could have his second course.  I will admit I was jealous of him and I didn’t understand why he was so special he didn’t have to follow the rules.  When I was 10, my parents finally explained why.  My little brother was slowly dying of a malignant brain tumor and we could not be sure how long he would live.  The technical term for what he had, which I didn’t learn until much later when I was an adult was cranialphryngioma.  I actually looked the term up recently and found out that currently the condition is largely curable, but it wasn’t then.

I came from a fairly large family.  There was my Mom, Pamela Horton, who was born in Birmingham, England, and my father George K. Horton who escaped from Nazi Germany at the age of 12 and ended up in England also where he met my mother.  They married and my father obtained a position as a mathematics professor at the University of Alberta in Canada.  They lived there for ten years and had four children—my older sister, Belinda (4 years older), my brother Jonathan (2 years older), me, and then my little brother, David.  Then in 1960, the year my little brother was born, my parents immigrated to the United States, settling in New Jersey where my father began what ended up being a career of approximately 50 years as a professor of Physics at Rutgers University, while my Mom became an elementary school teacher.  We settled in Princeton which was particularly attractive to my father since it had also been the home of another Physics afficionado—Albert Einstein.

I recall this is being a very exciting time full of discovery and new information.  Unfortunately, this was also when my parents began to notice that my little brother didn’t seem to be doing very well.  He slept  for extended periods of time and vomited frequently.  My father was very preoccupied with his work and so my mother ended up being the one to take my little brother to the pediatrician and explain her concerns.  Unfortunately, this being the 60s, the pediatrician was quick to dismiss my mother’s worries as just a bit of overanxious parenting.  Finally, my father happened to be taking care of my little brother who by then was around 3 years old and noticed that he was staggering when he walked.  My parents then made an immediate appointment with the doctor who finally took the trouble to shine a light into my brother’s eyes which immediately revealed the problem—a brain tumor.

At that point, my parents had a choice.  They had enough information to be aware that David’s illness was severe.  The question was whether to treat him locally with palliative care and allow him to die or else drive up to the renowned Boston Children’s Hospital in Massachusetts for heroic care.  They decided to take a chance and drove him up to Boston for immediate surgery.   The surgery was conducted by a team of doctors and nurses headed by neurosurgeon Dr. John Shillato who was at the height of his career at the time.  From what I gather, the surgery itself took up to 8-10 hours as Dr. Shillato meticulously opened up the front of my brother’s skull in an incision that went temple to temple, and then removed as much of the brain tumor as he could find. 

The tumor itself, according to report, was about half the size of a grapefruit, but there were also remaining fragments from the tumor that still needed to be searched out and removed.  By the end of the surgery, Dr. Shillato breathed a deep sigh of relief.  He believed that he had gotten out the tumor in its entirety and that he had saved David’s life.  In fact, he was wrong.  In two years it became painfully clear that the tumor had regrown and spread to other parts of the brain, eventually blocking the drainage of cerebrospinal fluid from the brain and causing hydrocephalus as well.  Further, the regrown tumor had snapped the optic nerve making David blind in one eye, and the pituitary was irreparably damaged which meant that David was no longer able to grow, among other endocrine problems, and he also endured mild epileptic seizures.  The prognosis was that he would eventually die, but no one was sure actually when that would happen.  In fact, David lived for another seven years, dying just before his 13^th birthday.

During those intervening years my family frequently travelled up to Boston staying either at Longwood Towers where I used to play on the elevators, or else at the Children’s Hospital Inn.  I became very familiar with the experience of sitting around in the Boston Children’s Hospital waiting rooms waiting for my brother to get a check up, or get tests, or have a doctor review his condition.  When my brother received treatment, he would stay at the pediatric ward which was, at the time, Ward 33.  So all of his toys and belongings generally had the number 33 on them whether he was in the hospital or not.  This kind of freaked my parents out because the home we lived in was 33 Phillip Drive.  For a while they tried to convince the post office to let them use the address 35 Phillip Drive, but they wouldn’t cooperate so we were kind of stuck with this uncomfortable coincidence. 

Unfortunately, in those days children were not allowed to visit on the ward, so the only time we saw David during his treatment at the hospital was when my parents rolled him onto the elevator in one of those wooden carts and took him to the ground floor.  From there we would go to the Prouty Garden where we would walk around together and simply enjoy the birds, the chipmunks, and the squirrels.  We would marvel at the fountain and admire the trees and the bushes and grass.  I think we all had a sense of the beauty of those transitory moments together and tried to appreciate them to the fullest.  More than anything else I recall that there were these statues that would do things if you pressed a button.  In particular, David loved the magic frog.  My father would make some mysterious motions in the leaves nearby and out would shoot a stream of water.  My little brother would shout and laugh at the surprise stream of water every time as if it had never happened before.  When he returned to his room, my little brother had a stuffed squirrel named “Pierre” to take with him which my parents gave him as a gift to remember the delights of the Prouty Garden even though he couldn’t be there every moment.

To get a sense of how strict they were about keeping children out of the wards in those days, there came a time when my brother had to have another marathon round of brain surgery.  The fact is my brother had perhaps 12 of these surgeries that lasted from 8 – 10 hours or so during the course of his lifetime.  I believe my brother was around ten years old at the time of this particular one.  The doctors were unsure of whether David would make it through the surgery so they cautioned my parents to say their goodbyes.  They did that, but then they wanted to have my brother and sister and I to have a chance to say goodbye as well.  So they arranged with the pediatric nurse on Ward 33 to roll David in his little wooden cart to a spot several feet from the elevator doors.  Then my father escorted each one of us up one at a time and we each waved at David from the elevator while he waved at us from the cart.  He was completely bald because they shaved his head in preparation for the surgery  and he looked particularly pale and fragile. We were not allowed to get near, to kiss him or hug him or speak to him at all.  We each only had those few hurried moments on the elevator.  Luckily, he did not die then, because I think we all needed more time to spend with David, but there was no way of knowing at the time if he would survive.  Visiting rules are a lot more lenient now and I think that is a blessing.

Over the years, my father and David spent countless hours on the highway driving from Princeton, New Jersey to Boston, MA and back again.  The trips were quite lengthy, up to five or six hours long, and sometimes my father would get tired.  At those times, my father would tell us, he would park on the side of the road and take a nap while David would sit there proudly with his watch timing the length of the nap.  Both my father and David developed a special bond of love and trust on those visits.  One story my Dad told at one point tells you what kind of kid David was.  Apparently, my brother had been on one of his lengthy stays at the hospital when my Dad called him and said I am going to drive up today and take you home.  Well, time passed and it was getting pretty late in the day, and the nurse came in and told David that my Dad wasn’t going to come.  Apparently, David got pretty irate at this and had a big argument with the nurse that in fact his Dad was coming and he, David was going to be leaving.  The clocked ticked on and it was looking extremely unlikely when lo and behold in walks my Dad and told David, time to leave.  David had gotten himself all dressed up and ready to go, sneakers tied and shirt buttoned, the works, and he had made his bed neat and tidy, and was sitting there waiting all set to go.  So, David slipped off the bed and was at the door just about to leave with my Dad, when he stopped and said wait a minute.  Then David went back into the hospital room, got a pencil and a piece of paper and carefully wrote on it, “I TOLD YOU SO.”, placed the note on the bed, and then left.  Stubborn to the end!

Two and a half years later, just before his 13^th birthday, on February 1, 1973, David died unexpectedly in his sleep at home in his own room at Phillip Drive.  Among his last words was a question about calling the doctors and finding out what to do because he didn’t feel well.  My parents then wrapped my brother’s body in a sheet, carried it to the car, and then drove it back up to Boston Children’s Hospital.  For the last few years of his life, David’s treatment was largely a charitable contribution by the Hospital.  They were learning from him and trying out new procedures that would provide considerable insights into how to treat other children, but would do nothing to save David himself.  My parents brought his body back so that the doctors could continue learning from David by doing a final autopsy on his body.  Dr. Shillato met my parents at Boston Children’s Hospital and personally lifted David’s body into his arms and carried it into the hospital. 

My parents were very pragmatic individuals and did not have any formal religious belief, so they decided to have David’s body cremated.  There was no memorial service because my parents were too broken hearted to manage it.  My brother flew in from Stanford University in California and my sister joined us from Barnard College in New York.  We came together in Boston for a family meeting and to decide what to do and eventually concluded that we wanted David’s ashes scattered in the Prouty Garden where he had spent so many happy times with the family.  The only problem was that we didn’t think we could get permission from the Hospital to do it.  I believe my mother sat down and wrote out a request to the director of the Hospital asking whether they would allow us to do so.  However, once the letter was sent out, after some discussion we all agreed that we were unwilling to accept “no” for an answer. 

The next day, we picked David’s ashes up from the funeral home late in the afternoon, walked into Boston Children’s Hospital and made our way to the Prouty Garden.  As we stepped outside into the crisp fresh air, I noticed that it was beginning to snow and a layer of frost covered the ground, the bushes and the leaves.  There was some urgency in our actions, because we were afraid that we would be caught and arrested, so we quickly and silently went to an out of the way part of the Garden and scattered David’s ashes, carefully patting them around so they would join with the soil.  We did not need to speak, or say a few words, because all of us knew that we were together saying goodbye to a very special  boy.  It was so cold that we did not linger, but quickly returned to the warmth of the building.  I recall glancing backward as we left, and saw through the frame of the glass doors, the darkening shapes of the trees and bushes of the Prouty Garden, with large snowflakes slowly falling.  Ironically, two weeks later, my parents received a letter from Boston Children’s Hospital giving us permission to scatter David’s ashes in the Prouty Garden, so we didn’t need to be so concerned.

Since my brother’s death, my parents made it a yearly tradition to return to the Prouty Garden to remember my brother until their deaths, my father in 2009 and my mother in 2014.  I lived in Boston for 12 years and always made sure I joined them in these visits.  Once I moved down to Connecticut where I live now, I still always try to make it back to the Prouty Garden at least once a year as do my brother and sister.  Boston Children’s Hospital is always a home for me.  And the Prouty Garden is one of my most sacred places, not only for me, but for every member of my family who remembers David’s courage and his capacity for joy, and his love of the little things that made and continue to make The Prouty Garden so special.

To sign the petition in order to save The Prouty Garden, please click on the link below:

https://www.change.org/p/boston-children-s-hospital-preserve-prouty-garden