Showing posts with label Leukemia. Show all posts
Showing posts with label Leukemia. Show all posts

Thursday, February 18, 2010

I'm 40 years older than my older sister

Last Friday, February 12, I turned 47. Friday, February 19, would have been my sister Donna's 53rd birthday. But it's not really, because she was seven when she died of leukemia back in 1964, and so she never aged. She never grew to really taste life, explore her interests and talents, have a career, fall in love, become a mother. She's still seven. She'll always be seven. But she'll always be my older sister.

Oldest, in fact, since I have a sister four years my senior, and another one seven years my junior. Donna was the first born. As the old data processing acronym goes, FIFO: first in, first out.

I've written about Donna before, so I won't rehash the history here. There are a couple of reasons I wanted to post on her again. One is because of her birthday and the realization that I've lived four full decades longer than Donna; the other because leukemia still kills too many children and adults each year.

Here are some statistics from the Leukemia & Lymphoma Society website:
Every 4 minutes one person is diagnosed with a blood cancer.

An estimated 139,860 people in the United States will be diagnosed with leukemia, lymphoma or myeloma in 2009. New cases of leukemia, Hodgkin and non-Hodgkin lymphoma and myeloma account for 9.5 percent of the 1,479,350 new cancer cases diagnosed in the United States this year*.

Leukemia, lymphoma and myeloma will cause the deaths of an estimated 53,240 people in the United States this year. These blood cancers will account for nearly 9.5 percent of the deaths from cancer in 2009 based on the 562,340 total cancer-related deaths.

Every ten minutes, someone dies from a blood cancer. This statistic represents nearly 146 people each day, or more than six people every hour. Leukemia causes more deaths than any other cancer among children and young adults under the age of 20.

*Facts and statistics from Leukemia, Lymphoma, Myeloma Facts 2009-2010, June 2009.

One of the more promising treatments for leukemia not available during Donna's short lifetime is transplantation of bone marrow. The National Marrow Donor Program keeps a registry of more than seven million potential donors of life-saving marrow. Yet still perfect matches are hard to find. On January 23, 1999, I joined the registry in response to a marrow drive looking for a match for a specific person. It didn't hurt, it didn't take long, and it didn't cost me anything. Eleven years later, I'm still waiting, hoping that I can be a match for someone.

Maybe you can be a match for someone. If so, there's a good chance you'd be that person's last, best hope for a longer life. I only wish I could have donated my marrow to Donna.

To learn how you can join the registry, or make a donation to support their vital efforts, visit the Be The Match Foundation website.

Tuesday, September 16, 2008

Future Projects V: Family history 2 - my sister

The first line of Erich Segal’s novel, Love Story, is: “What can you say about a 25 year old girl who died?”

So what then can I say about a seven-year-old girl who died, other than she was my sister and I was exactly one year and two weeks old when leukemia ended her life? She was, in fact, exactly seven years and one week old when she died. I was born on February 12, 1963, her birthday was February 19, and she died on February 26, 1964. I always thought that was interesting.

Interesting in retrospect, of course, because I have no actual memory of her. In fact, there was a time when I didn't even know of her existence. I was perhaps four or five or six - some age when everything seemingly was as fuzzy in real time as it is in hindsight - when a friend (a second cousin, actually, though we always felt more like friends than family) said to me one day that I used to have a sister. At the time, I did have a sister, Amy, four years my senior (another sister, Judi, arrived when I was seven). No, my friend said, you had another one, named Donna, but she died.

Not knowing the term "bullshit" at that age, I'm guessing I merely called him a liar, then went home to ask my parents. I was shocked to find that it was true. I did have another sister. So why weren't there any photos of her in the house? Why didn't anyone talk about her? Why didn't anyone tell me? These were questions that remained either unanswered or answered unsatisfactorily to an inquisitive young mind such as mine.

Through snooping, I found the occasional photo. My favorite, which unfortunately I no longer have, showed her playing with me; I have what appears to be an empty KFC bucket on my head. Most tantalizing in my memory is that we used to have a junk closet that I loved to explore. In it was a tape recorder, a mini reel-to-reel job. The batteries were dead but I found if I manually turned the reels you could hear someone's voicing speaking in slow motion, Lurchian deep tones. It was unintelligible and I think back on it wondering if perchance Donna's voice may have been on that tape.

Anyway, I grew up with the unspoken Code of Donna Silence (CDS) and when Judi came along it never occurred to me that she should know about her. Until the day when she was probably about the same age as I when I found out about Donna, maybe closer to six or seven because she could read well. She, too, had been snooping around and was going through my father's wallet. There she found an interesting yellow square of newsprint, which she brought down to the den and proceeded to read to the family. It was Donna's death notice. Within seconds, my mother put her hands over ears and yelled "Stop!" My father sprang up and took the little square from Judi's hands. I was a mute witness, yet the scene brought back my feelings from my own rude introduction to the CDS.

I'd like to be able to say that things changed after that, but they didn't. I was too young to understand the unbearable grief of losing one's daughter. I only knew that I felt cheated. In my teens and twenties, I kind of adopted Donna as my guardian angel. Any near miss I was involved in I chalked up to her intervention. This included a traumatizing plane ride home from my honeymoon in Ecuador when I was 30.

Prior to that, however, I decided that enough was enough. I was more than simply curious about Donna; she was my sister and the very reality of her existence was being denied to me. Bad enough I didn't have a memory of her, I also lacked a community willing to help me create a memory of who she was. Urged and guided by my soon-to-be-wife, a social worker whose grab-the-bull--by-the-horns philosophy was hardly Rubinesque, I finally confronted my parents one night.

As lovingly, gently, and empathically as I could, I sat them down and told them that I needed to know my sister, and I needed them to give her back to me. Difficult as it was for them, they proceeded to tell me stories about her, both the good and the bad. Then my mother went up to her room and came back down with photos of her that she had kept in her night table drawer. They told me about her personality, the course of her sickness, and, courageously, of her death. I was chilled to hear my mother say that as Donna was drifting in and out of consciousness, she opened her eyes, looked at my mother, and said, "Oh, I thought you were holding Jason." Those were her last words. My name was her ultimate utterance.

I decided then and there that I needed to bring Donna back to life. I needed to write her story. I began to do some research by talking with family members. They were cautious in sharing their memories; not only was it still painful for them, but they wanted to be sure it was OK with my parents that they talk about her. They all had signed on to the conspiracy of silence out of love and compassion for my parents. Eventually, you could almost hear the pop of pent-up testimony as people began to speak about her freely.

I visited her elementary school and managed to get a few papers from their archives, including a registration form in which my mother notes her interests and tastes. I got a copy of her autopsy report from Children's Hospital in Boston, the request form signed by my mother's neurologically impaired hand at my semi-covert insistence. I was told that Donna's eyes were donated; someone in the world sees through my sister's eyes. For all I know, I've looked into them.

Of course, now that I am the father of two girls, ages 12 and 2 (with the older one, I swear I held my breath the entire year she was seven), I have much more empathy and sympathy for my parents' reaction to Donna's death. Honestly, I don't know how I could ever endure a day or fall asleep at night after such a tragedy. Yet they did. My mother laughed and cared for people until her illness took her away, and my father worked hard day after day making a good life for the three of us who remained.

Since my intervention, through to the current day, photos of Donna are displayed proudly in my father's house. At the time of her yahrzeit (the anniversary of her death by the Jewish calendar), we all light candles and/or visit her grave, activities that we had never been invited to share in when my sisters and I were young. Coincidentally, her grave is directly across from a girl who, though 11 I think when she died, passed away on a February 26 as well. It is thought that the two are fast friends down there.

Speaking of graves, Donna was the first major death in the Rubin family of my father's generation that made everyone realize that they should buy plots. Today, my mother, my grandparents, my uncle, and other relatives are in the same row as Donna. I remember passing her grave at my uncle's funeral, and a great aunt looked at her plaque and said sadly, "She brought us all here."

When I see the stones left on her plaque I know there are many people who knew her and will always remember her. Gradually, I am getting to know her, too. A biography of a seven-year-old girl won't be a thick volume, but it will be heavy with unlived days, unfulfilled potential, and the unfought fights and never-felt embraces between a big sister and her baby brother.