Compassionate Abigail
February 17, 1980-June 9, 2001

Abigail Alliance for
Better Access to Developmental Drugs
To Help the other Abigails and Davids

A non-profit incorporated in Virginia
www.Abigail-Alliance.org

Abigail Alliance Objectives

In 2001 my Epiphany gift from Abigail was a cat. Abigail was doing everything possible to live out her life to the fullest, but Abigail knew she was in big trouble since her cancer had returned in early January. Abigail said I needed a "back-up pet" since my dog was thirteen-years-old.

Abigail had Rags, her own kitten, but she wanted me to have a cat as well. "I don’t know," I said. Never enthusiastic about change, I was really hesitant to consider adding a cat to my household. Abigail pressed hard, but I was evasive. Finally she said, "Dad, let’s just go to the shelter and look." I agreed and we found an adorable little steel gray kitten, about six months old. I was still hesitant, however, and planned to think over the decision that night. Abigail understood and called me at work the next morning to hear my decision. "You are usually right," I told Abigail. "Let’s get the kitten tonight." 

"Fine, Dad, I’ll get all the stuff we’ll need today, and we’ll go by the shelter when you get off work." When I saw all the stuff – food, litter, box, transport, brush, etc. – I said, "What do I owe you?" "Nothing," she replied. "I was too sick with chemo to celebrate your birthday last fall, and Father’s Day will be here before we know it, so let’s make the cat your now and again present. The cat will be your reminder that I love you every time you see her. 

When we reached the shelter, we discovered that the gray kitten was already spoken for, so we looked through the group to make another selection. One cat of many colors named Baby approached us, and when we spent time with her, she was very attentive and rubbed against us and cuddled. This was one, sweet female cat. We chose Baby, and I realized that with an older cat like her I wouldn’t have to worry about a kitten climbing the drapes or drawing blood with her tiny claws.

We put the cat in the carrier and brought her home. And I’ve been happy ever since. Baby was my last gift from Abigail before Abigail went to heaven. Baby reminds me every day of Abigail’s loving spirit.¤

Before Abigail Burroughs died of cancer on June 9, 2001, many people heard Abigail’s story on television and in newspapers across the country. Abigail did not qualify for any trial of newly discovered cancer drugs (because her cancer had started in the wrong place) until she was too weak to participate. Abigail had devoted all of her twenty-one years to helping others, and she planned to spend the rest of her life as an advocate for cancer victims. Using her own experience as an example, Abigail spent the last few months of her life appealing to the pharmaceutical companies and the public at large for the wider use of developmental drugs through clinical trials and compassionate use. Abigail was successful! Abigail’s spirit is alive today in the caring community in which she lived.

Abigail’s story is still being heard throughout the United States. "We continue to get significant support on Capital Hill, especially the House of Representatives, where Julian Grante, Doug Baxter, and I were called to speak to a House committee in June," Abigail’s father reports.

"We are now setting up a non-profit group which we are calling "The Abigail Coalition for Better Access to Developmental Drugs." The Theta Delta Chi fraternity at the University of Virginia – where Abigail was an A student until her death – has dedicated their fall 2001 fund-raiser to help fund it.

"We are moving forward in getting media stories about the need for wider use of newly developed cancer drugs." People have contacted Abigail’s father, Frank Burroughs, from many places in the country – some through the Network4Singles web site. For further information on this issue, or for personal information regarding accessing new drugs, contact him at frankburroughs@hotmail.com.

One of the people who contacted Frank was David Baxter’s father. As a sixteen-year-old David was diagnosed with colorectal cancer last spring. David was unable to participate in trials of new cancer drugs. (Clinical trials usually are only available to people eighteen and older.) After a shortened day at school Friday, October 5 – where he conferred with a counselor about college, David had some friends over for the evening. David died in his sleep on Saturday. David wrote the following essay for his high school Fantasy Literature class on September 9, 2001. "David appreciated life, not just physical life, but the purpose of life. David was learning from life right up to the very end. His mission in life was complete and the Lord allowed him to come home without having to go through more suffering." His heroic spirit lives on.

  
David Baxter  
September 29, 1984 - October 6, 2001

by David Baxter

Everything was going great for me. I had just returned from a week away from school to visit my brother and sister. I was also able to catch a couple of spring training baseball games in Arizona. I somehow got a date to the Junior Prom that I had suddenly decided to attend. Even better, my date was one of the more gorgeous girls at the school. I was lucky enough to participate in the spring musical "Dames at Sea." I really couldn’t think of a better way to finish up the month. Unfortunately it had already been decided.

Though the past two weeks had been incredibly great for me, I hadn’t been myself. I felt sick the whole time I was in Arizona; I had pain in my abdomen. By the time Junior Prom came around, I wasn’t feeling too great as far as my body was concerned. I had a blast at the dance, but afterwards I was feeling the late night.

The next week around Wednesday I felt I had to stay home. The next morning I did the unthinkable. I told my mom to get me a doctor’s appointment immediately. Now my mom knew that something was wrong, because I never went to the doctor.

After finally getting to the doctor’s office, I had to endure the usual questions from the nurse, "On a scale of one to ten how much pain are you in; how’s your breathing?" Then she asks the question, "How does it feel to go to the bathroom; does it hurt?"

Inside I’m thinking, "Are you kidding me; would I be here if it didn’t hurt like nothing else I’ve ever felt." But on the outside I hear myself say, "Oh, it’s not too bad; it is a little sore though, I guess." With that she takes her notebook and walks out the door.

Once again I’m waiting – but I’ll get used to that, because there will be a lot of that ahead for me. The doctor comes in and gives me a run down of the situation. After that he takes me to the radiology department and performs a couple of tests I’d rather not mention, otherwise I may lose yet another reader. After my "quick and painless" tests I was allowed to go home.

Luckily for me I started to feel better later in the day, so I was able to make it to work. Work was long and boring as usual, so I was relieved when it was finally seven o’clock, time to go home. My dad picked me up – which was kind of unusual because my mom generally was the one to pick me up. I got in the car, and my dad turned down the music right away. That was when I first knew that something was wrong. He got it out quick, just flat out told me that the samples the doctor’s took were cancerous.

I was glad he told me that way. Everyone imagines what it would be like to hear those words. Let me tell you, what you think that you’ll think is no where close to what actually runs through your mind. I was okay though; it hadn’t quite hit me yet.

So for the next couple of days nothing really seemed to happen in my eyes even though my plan of attack was being laid out right in front of me. I told my friends and met with doctors. My life was about change in a very large way.

My friends that I had talked to every day just a few days earlier I would see far less often, since I wouldn’t be able to go to school. Before all this happened I liked to be outside: playing basketball, fooling around – definitely not lying on the couch for days on end watching the "Price is Right." If I didn’t have my family, friends and church to help me through the obstacles that have been placed in front of me, I don’t know what I would have done.

Quickly I began my radiation treatments along with my chemotherapy treatments. For my chemotherapy my doctors decided to do a twenty-four hour infusion instead of the normal once-a-week intravenous treatment. This decision meant that I would have to have a catheter placed inside a vein, and I would have to lug around a pack that contained a pump, chemotherapy and an alarm. This plan was good and bad. On the one hand, I wouldn’t have to go to the doctor once a week and sit there for two hours. But on the other hand, I would have to carry around that bag.

The worse part at that time was that I was still committing myself to do the play – so as not to let down my dancing partner. That meant that I would have to find a way to hide that pack: go onstage, muster out some kind of performance, sing, and somehow not fall down somewhere during this process.

After the play I cut my connections to Woodland High School almost entirely. Except for a few visits to see friends, I stopped going. I had a personal tutor assigned to me by the school district. This plan was very good, because soon I would be starting a new type of chemotherapy – my going in once a week and getting terribly sick for a couple days.

That was when I started to do thousands of tests. I had blood work, C-T scans, P-T scans, and scans using some other arrangement of letters. I had doctor’s meetings to go to which seemed to be just about every other day. I had to see my doctor in Woodland each day that I had an appointment with another doctor, because I had to see him before I could go to see my doctor in Sacramento. I’d go to see him, and he would ask the same things my other doctor asked me. He’d give me some lab papers send me to get some tests and after that send me to see some kind of specialist. The last specialist I saw told me that I’d likely be spending a week in the hospital for chemotherapy with a tube up my arm.

Shortly thereafter I made a visit to Sutter General Hospital in Sacramento. You hear a lot of scary stories about cancer patients, and let me tell you right now that they are true – every single one of them. From the stories of nurses coming in at two in the morning to take your vitals for some awful reason, to the noises from the room across the hall – either screams or moans of who knows what. It was quite possibly the worst four days of my life.

Thankfully it was only four days and not the entire week. Sadly enough though, the reason I left early was that my liver had the equivalent of a heart attack. So I was released from my bondage.

Along with the thousands of doctors’ cards I have received, the sore stomach, and the incredible debilitating pain in my back, I have realized things that perhaps some people never realize.

The greatest of these is how lucky I truly am. Even though I have a disease that is quite persistent on destroying me (and is far as I am concerned not doing very well at it), how else would I see all the small things that I am fortunate to have in my life?

Whether it is something like taking a normal shower – which was impossible while I had a catheter in my arm – to something as amazing as knowing just how many people really care about me. Now that I am beginning to win battles with the monster inside, I know how much this experience has opened up my eyes – not only to what is around me but also to what is inside of me.

     I keep splitting my daffodils and planting more as they get crowded. My rough estimate is that there are about 2,500 daffodil blooms in my garden each spring. One of the places Abigail wanted her ashes spread was on my daffodil gardens.
    I have a little daffodil story for you and your readers.
   On Sunday my dear friends Pat and David from St. Michael's drove together to Abigail's Memorial service. They both could not come to the party, but on the way home, Pat wanted to stop by her old house on Buchanan Street across from mine. She stopped in front of her old house and mine and began to cry. She then told Dave a daffodil story. When Pat first moved into her house on Buchanan Street , she told Dave it was a difficult time in her new life as a single. Pat did not go into any detail about what had happened, but she was very lonely and going through the stress of moving at the same time.
    The day after Pat moved in, eight-year-old Abigail, on her own, went down into my basement and came up with a big mason jar. Abigail then went out into the garden and picked a big bouquet of daffodils. Abigail took the flowers over to Pat. Pat was very touched. She told Dave that she has never forgotten and will never forget that wonderful sweet gift from Abigail. Pat said that Abigail thought of others. That Abigail's whole life was a special gift to many.  

Frank, Abigail's Dad

A sunflower forest is blooming somewhere
to celebrate life--past and future!

July 24, 2002

June 12, 2002

From: Frank Burroughs, President, Abigail Alliance for Better Access to Developmental Drugs - to help the other Abigails and Davids    www.abigail-alliance.org
Dear special allies and supporters,
This has been another dramatic and difficult day in the ongoing Imclone saga that we have been watching.  Of course we have never been an ally of
Imclone Systems, but we are advocates for cancer patients.  I think we saw the real possibility of it coming, but as you all most likely know, Imclone's
former CEO, Dr. Samuel Waksal, was arrested today in New York City on SEC violations.
The events of the past many months beg the question, has Imclone given a higher priority to helping save cancer patients or making money?
Where is the Imclone expanded access program that they promised would be filled with the FDA on Monday June 10?  Is the latest Imclone crisis another set back for an expanded access program of Erbitux (C225)?  Are there more revelations that may even bring the efficacy of their promising drug into question?
Tomorrow there is a hearing on Capitol Hill into Imclone.
What about the cancer patients?  Has the development of a promising drug been handled improperly?  Lives are at stake, and Martha Stewart may have the perfect home and money from selling her Imclone stock early, but what about the cancer patients who do not have the energy to even clean their houses; let alone decorate it or make fancy sherbet.  Is money the most important goal in life or could one dedicate their wealth and energy to helping others?
I think that, as much information as possible about Erbitux needs to be made public, and if it shows efficacy, cancer patients should have some chance to get into their expanded access program that Imclone promised.
As Abigail said in her 1998 high school salutatorian speech: "Success is fleeting, but when all is said and done, all you have is your character."
Frank Burroughs

Abigail selling summer fruit in 1997

The Abigail Alliance for Better Access to Developmental Drugs is incorporated as a non-profit organization.  To learn ways you can help in efforts to increase the compassionate use of experimental drugs, contact Abigail's Dad at frankburroughs@hotmail.com  or visiting the web site:
www.abigail-alliance.org 
You can participate in the celebration of Abigail's life and the victories of the Abigail Alliance through a coming book. Send us your thoughts and keep visiting this web site. 

    Thought you would like to read what Frank wrote about our wonderful experience at UVA this weekend. It was a time of closure. It was a beautiful and melancholy ending to a delightful and challenging experience.
    We had a lovely drive to and from Charlottesville, even though it was raining Friday night and Saturday morning. The mountains and abundant plants and animals were fascinating (saw some foals, calves and llamas!). When Frank first went out on Sunday morning, four miniature poodles made him the center of their morning games and brought him a time of peace and joy. Four ducks (and a goose) strutted importantly around the parking lot as we were trying to exit (and miss them) that morning.
    An exciting highlight was meeting the gracious president of the university. The sermon Sunday morning was a gift from God: Pentacost and Graduation are both times of change and renewal. A time to look back at an eventful past and a time to look forward to an unknown future full of hope. There is a copy on this web site.
    When Frank carefully tied an Abigail Alliance card with the words "Love, Dad" on the beautiful butterfly balloon and released it, most of the 2002 UVA graduating class gasped. The colorful butterfly floated slowly upwards (and sideways), and then it went to rest in the arms of a young, newly green tree. The cool morning breeze rocked it gently in its perch, and we knew that Abigail's spirit was at peace in the excitement on the UVA campus and reluctant to leave it quickly. I believe that the butterfly balloon will delight several people from its position in that tree -- and perhaps someone who knew Abigail will discover and read the card.
  What a delightful, inspirational ending to a special time.
    The Preacher (in Ecclesiastes) was right when he said that there is a time for everything under the sun.
    How glad I am that God has brought each of you into my life. I am fortunate indeed!

From: frankburroughs@hotmail.com
Date: Mon, 20 May 2002 Subject: UVA graduation

Dear special friends and family,
        My weekend at the University of Virginia was special, sweet, and melancholy.  I was blessed with more sweetness than melancholy.
        UVA has been an important part of Abigail's life and a special part of the lives of Abigail's family and friends over these past four years, especially these past two and a half years.  Since there are so many wonderful UVA people and organizations that have been so supportive, I do not want to list them all for fear of leaving someone out.
        I want to share a little of the weekend with you.
      UVA President Dr. John T. Casteen III and I had a nice talk just before the very nicely done Valedictory Exercises on Saturday that honored Abigail and others including a very special UVA young man, Mark Edward Brzozowski, who died of cancer in 1999.
      I was with one of Abigail's closest friends, special Sara, part of the fabulous UVA foursome, at the reception afterwards at President Casteen's house across from the UVA Rotunda.
      I ran into Mark Brzozowski's long time childhood and UVA friend Omar and Omar's family at the reception.  Omar, like Abigail, is a member of the
Jefferson Society.  Omar delivered a wonderful remembrance talk at UVA about his very close friend Mark some months ago.  That evening Omar also shared some words about Abigail.  I talked with Omar's brother, who attends James Madison University, and discovered he knows Abigail's very special friend and Abigail Alliance board member, Anne Agnew.  I found out that Omar's mother and my sister Joyce are friends and former co- workers.
      I saw lovely Stephanie later on Saturday.  Another of the fabulous foursome.

      My compassionate sister Joyce was with me, and so was gracious Bonnie. Having Joyce there added so much to Saturday.  Joyce had the melancholy task of heading back to Northern Virginia alone on Saturday with some of Abigail's furniture that Sara, Stephanie, and Jen had in their UVA apartment.
      I was apprehensive early Sunday morning as I headed to the graduation exercises.
      When I parked my car near Abigail's old apartment and got out, I noticed for the first time, etched in the concrete sidewalk poured in 1999; ABIGAIL.
      I went to a beautiful 8 AM service across from the Rotunda at St. Paul's Episcopal Church.  The first Sunday of Pentecost.  The Disciples become Apostles and head out into the world.
      For me the scene on the UVA Lawn was over- whelming.  It was time for me to leave for home before the graduation started.  It was one of those moments that I had to do what was best for me.  As I was leaving with my translucent multi- colored helium butterfly balloon, I had to find a place to launch the balloon on the other side of the Rotunda from the lawn.  I tried to go up the Rotunda steps to the east deck. I had remembered this is where Abigail was one week into her first year watching the big orange full moon against a dark blue sky (UVA colors) with her new girl friends.  I also wanted the balloon to clear the trees.  The security people would not let me up there, because the procession was about to begin.  I launched the balloon on the lawn on the east side of the Rotunda hoping it would clear the trees to the south as the cool wind blew from the north.  The balloon started to rise towards the sky, and then a gust wind sent it right into a young poplar right next to the Rotunda.  Wonderful Bonnie, with a happy smile, said, part of Abigail's spirit just doesn't want to leave UVA!
      I then went to one of Abigail's special places at UVA where she loved to spend time talking, studying, and drinking earl grey tea.  The Star Bucks across from the Rotunda.
      I was ready to head back home early.  My only regret was that I had not seen Jen of the fabulous foursome.  I was waiting in line for the men's room upstairs in the quite part of Star Bucks with some spunky UVA graduating men, when I could see someone in a cap and gown coming towards me.   It was Jen!  With tears in our eyes reflecting joy and melancholy feelings, we hugged.  The trip was complete except for the orange, of course, Gerber daisy I bought at a fruit stand on the way home.  Abigail's third most favorite flower.
  God bless you all for the love and support you have given Abigail, her family, and her friends.  You were with us in spirit this weekend!
        Frank

"Abigail said, ‘If I make it, I want to devote the rest of my life to helping people with cancer.’ Somewhere along the way, people who run AstraZeneca and ImClone must have taken that same vow. How tragic if minutes before the dawn of a cancerless world, the sun sets on a 21-year-old young woman because of drug companies’ refusal to deviate from policy as pitiless as the disease itself."

Jullian Grante, lecturer, motivational speaker, political advocate, and member of the Board of Directors for the Abigail Alliance for Better Access to Experimental Drugs. Contact him at  Jgrante2@yahoo.com

A non-profit incorporated in Virginia with 501(C3) filed with the IRS

and go to the joint Abigail Alliance and Marti Nelson Cancer Foundation web site: www.CancerActionNow.org

1. Fall Fundraiser: Mark your calendars for November fundraiser. Details will be announced, but we sometimes have a gala, black tie optional,  Abigail Alliance Dinner Dance with Auction. We may
2. Major FDA meeting: Director Cynthia Small, along with board member and our chief lobbyist Jullian Grante, joined me at a large FDA meeting for Clinicaltrials.gov on July 24 at the Capitol Hill Hyatt Regency Hotel in downtown Washington. I spoke at the meeting stressing the need to get more pharmaceutical companies to get their clinical trials posted on clinicaltrials.gov and the need for more attention from Congress, the White House, the FDA, and the press on the issues the Abigail Alliance is putting forth to help those is dire need. My speech appears below.
3. Expanded Access: The Abigail Alliance and our close allies the Marti Nelson Cancer Foundation continue to work with pharmaceutical companies to do expanded access programs and to increase the size of existing expanded access programs. This effort can be very frustrating!
4. Press: We are working with three major newspapers on possible stories and working on other media contacts. Fred Santino, Abigail Alliance New England Coordinator, is also working on media coverage. Fred got a great editorial published recently in the Atlanta Journal.
5. UVA: University of Virginia fraternity Theta Delta Chi and UVA sorority Pi Beta Phi are working on the second annual Abigail Alliance Casino Night fundraising event in late October. There are two other organizations at UVA that are showing interest in helping the Abigail Alliance. Go Cavaliers!
6. New Link: We have added a new link to our web site,  www.abigail-alliance.org, Corporate Angel Network, www.corporateangelnetwork.org. Corporate Angel Network arranges free travel for cancer patients on unused seats on corporate planes. This is wonderful work they are doing! This new link shows our support of this effort. A future goal of the Abigail Alliance is to help poor people get better access to treatments.
7. Linda Springfield: Linda Springfield has joined the wonderful volunteer Abigail Alliance staff initially helping us find a PR firm pro-bono and will be helping Cynthia Small with the fall fundraiser.
8. FDA: Hard working Steve Walker continues to help us address important FDA issues that will help people, like his lovely wife Jennifer, who have run out of approved options in their battle with cancer and other life threatening illnesses.
9. Growing: The Abigail Alliance keeps growing very rapidly. We continue to get more national recognition, people keep joining our important effort, and much needed financial help is growing. As I often told Abigail, you all are the best!

The second Abigail Kathleen Burroughs Award for Outstanding Community Service was awarded to two students at George Mason High School in Falls church, VA in May 2003. Compassionate Abigail did much during her short life to help others, so these annual awards have been established by all her loving parents in her honor.