Liddy

The Formation of the Liddy Shriver Sarcoma Initiative

A Story of Liddy's Journey with Ewing's Sarcoma
as Told by her Mom and Dad

In April 2002, our daughter Elizabeth (Liddy) was diagnosed with Ewing's sarcoma. Liddy died on January 15, 2004. She was 37-years old.

We knew nothing of this disease and of the journey that lay ahead for Liddy and us after we read the original pathologist's report. The reactions of grief, loss, despair and depression that we experienced during the 21 months between her diagnosis and her death and since then are normal and understandable. But knowing these reactions are normal does not make them go away. We have found solace in our religious faith. We have benefited from the love, concern, good-wishes, and prayers of our family and numerous friends who reached out to help her and us in any way they could. We have benefited from attending meetings and making friends at Gilda's Club and sharing our hopes and fears with each other. And, we have benefited from the spirit and accomplishments of Liddy during her journey with a cancer that was relentless, metastasizing to lungs, to her brain, to her abdomen. She alone, as each cancer patient must, had to deal with the unsettling concern of not knowing if, when, and where the cancer will develop next. She alone endured the side effects of the extremely rigorous treatment regimens that she had. We could be there to give her our love, comfort, care and encouragement, but it was her body and her mind.

Liddy was a computer scientist by education and she approached her cancer as "just another problem to solve." She read extensively about the cancer, various treatment regimens, the results of clinical trials, and she developed a small network of people—patients, caregivers, and loved ones—who found it helpful and consoling to discuss their sarcoma situations with one another. Many became her (and our) personal friends. Each meeting with one of her doctors—oncologist, neurologist or radiologist—began by reviewing a small, well thought out, prioritized list of questions and a recital of her observations of her physical condition. From early on, she kept a personal journal on the web in which she would record thoughts that indicated how she was feeling, her analysis of various drugs, treatment regimens, and some common everyday things, such as what she ate, who visited her, and what things she was planning to do.

Before proceeding on to the formation of the Liddy Shriver Sarcoma Initiative, we should tell you a little bit about the nature and course of Liddy's cancer. Sarcomas are rare and dangerous cancers in adults. They account for only 1% of all adult cancers. Her cancer, Ewing's sarcoma, is an aggressive cancer, i.e., it grows very quickly. As such, it needed aggressive treatment. After three months of chemotherapy, Liddy's primary tumor, which was in a nerve in her left thigh, was surgically removed.

We learned after the surgery that it had metastasized to her lungs. She had post-surgical radiation and additional chemotherapy. These new tumor sites started out as "micromets" but one, in particular, grew quite large very quickly. The tumors in her lungs did not respond to the chemotherapy and new tumors continued to grow. She participated in a couple of Phase I clinical trials that used various experimental drugs, none of which stopped the tumors' growth. Two to three additional chemotherapy regimens were tried after these clinical trials. Then a life-threatening event occurred with only the briefest of warning. The disease metastasized to her brain. She underwent an emergency craniotomy to remove two golf ball sized tumors from her frontal lobes. We were told that we should only think in "terms of months, not years" for her life expectancy. She miraculously recovered from that operation, endured a complicated and painful chest tube experience, had more chemotherapy, and emerged from the hospital three weeks later. She and her husband Tom then spent several weeks with us in our home.

The first scans after the craniotomy revealed that more brain mets had developed and the one near her occipital lobe had grown. She underwent whole-brain radiation and, concurrently, radiation therapy to treat the largest and most dangerous of her lung tumors. The radiation therapy was the first treatment that had any effect on the tumors! The large tumor in her lungs had actually shrunk a small amount as did the brain tumor in the occipital lobe. But this was only a temporary reprieve. A tumor outside the lungs appeared and grew toward one of her kidneys. The tumors in her lungs continued to grow and new ones appeared in her brain.

Throughout all of this, Liddy kept on writing in her on-line journal, researching the literature, making additions to the medical data she had been posting on the web, corresponding with her family and friends, helping some of them over difficult moments. And, what has amazed so many people, is that throughout all of this Liddy biked as often as she could and wherever she could, whether it was on a trainer in her home or on our deck, an exercise bicycle in the hospital, or on a bike path or the open road. Liddy was an avid cyclist and biking was an integral part of the way in which she approached dealing with her cancer. As her disease became increasingly serious, she decided to do some of the things that she had always wanted to do. Among the list of things was going on a few multi-day bike tours. And do them she did. A 200-mile 4-day bike tour in Louisiana, a 6-day bike tour in Denmark, and a multi-day foliage tour in New England.

When it came down to the last six weeks of her life, we were given a very special gift because she was in hospice care in our home. The gift of being with her: to care for her, comfort her, stroke her, read to her, talk with her and at times "be her voice," to help her with her beading and other projects, to play the music that calmed her and made her less anxious, give her ice chips for her dry mouth and her dry lips, to kiss her, and to tell her how much she was loved and admired. So many people are not given the gift of being with their loved ones as they take their last steps on their final journey. We were truly blessed. And, as Liddy slipped away, we sensed that she knew we were there trying to help her along the way.

Liddy is an inspiration to everyone who becomes aware of what she did during her 21-month encounter with Ewing's sarcoma. She accomplished so much with the way she approached her cancer. She helped people understand some of the complex medical issues involved in dealing with and treating cancer. She brought parts of our family back together. People from around the world have read her journal. She was, directly and indirectly, a consolation to others. It was in recognition of these "lessons of the human spirit" and our desire to permanently capture them for future generations of sarcoma patients that we formed the Liddy Shriver Sarcoma Initiative. We hope it can be of service to the sarcoma community.

Peace,

Bruce and Bev Shriver
January 2004

Liddy's Journal - How Do I Feel Now?

A Tip from Liddy: Find a way to work thru your feelings. For some, this is talking to others in a similar situation. For me, it has been documenting my feelings and thoughts in a journal. Once I have been able to examine a thought, feeling, or frustration in this manner, it is much easier to move past it to the next one. :)

4/4/02: I had an incisional biopsy of a soft tissue mass located at the base of my hamstrings on my left leg. They were going to remove the tumor, but didn't because the path report wasn't definite that it was benign. Photo of tumor.

4/5/02: Tom and I came home from the hospital. I'm walking with a cane, but am getting sharp pains every few steps.

4/6/02: The incision doesn't hurt that much. There's quite a bit of bruising. I'm having very sharp pains in the back of the calf when walking, so I'm using crutches. The pain is probably due to manipulation of the nerve during the surgery. I had many visitors which made the day pass more quickly.

4/7/02: The sharp pains have increased; now I can't straighten my leg without them kicking in. Mom and Dad dropped by with a meal; Dad brought his digital camera. Incision photo 1 (April 7th) and 2 (April 21).

4/9/02: The bruising around the incision is reaching the itchy stage. The sharp pains are still present, and the burning is still taking 2-3 hours out of my night. Tom started me back on a light upper body workout.

4/11/02: The staples came out today! I got a prescription that might help with the burning pain. I'm relieved to finally get the path report; it is malignant. I spoke with the neurosurgeon about the pain when walking; he didn't seem to think it would go away very soon. He had a theory about the tumor being swollen and this is putting pressure on the nerve when I straighten the leg. I can start biking again (one leg only). He had never heard of a Ewing's sarcoma/PNET in a nerve; he promised me pictures taken during the surgery so I could prove where the sample from biopsy came from.

4/12/02: What a long day... 12 hours of either seeing doctors, or waiting to see them. And, no time for biking :( My first appointment with an oncologist at Memorial Sloan-Kettering.

Appointment details: The day started early with 8:00am appointment with an oncological surgeon Dr. Murray Brennan. He is known world wide for his sarcoma work. After a quick history and exam, he looked at my MRIs and path report. He said that this type of tumor responds well to chemo, and suggested that we see Dr. Robert Maki, a medical oncologist. Dr. Maki fit us in at 3:00; we spent the hours between the two appointments learning more about Ewing's sarcoma/PNET via the web. (MSK has VERY nice waiting rooms, with a few terminals for web access.) Dr. Maki's fellow took a history, and did an exam.

Dr. Maki joined us, and almost started off right away with "This is a very rare cancer." 25-40 cases in the US annually. He treats 6-8 per year. He described the treatment, and listed the side effects of the chemo (loss of hair, mouth sores, higher risk of infection, fatigue, etc.). He mentioned the additional tests that are needed (CT scan and bone scan).

He described Ewing's sarcoma a bit. Not much is known about why they occur. He mentioned that my case is rare; normally, the tumor is discovered a few weeks or months after the onset of pain. (I have had pain for over 7 years now.) And, this is a cancer found in children, not adults. I will see him again on April 19 to discuss the results of my CT and bone scans, and to schedule the first chemo.

So, what's the prognosis: "If you were much younger, the prognosis would be 70%, but you're an adult, so it's not as good." (I'm only giving this number because a number of you have already pointed me to articles and papers from medical databases, etc., saying that it doesn't look so bad. I don't think it does, but I just want you to know what the doctor thinks.) So, what's the prognosis for the nerve: "The nerve is shot." It probably won't get better. There's hope that the pain in the leg will improve soon. If not, they might consider surgery within a month or so; there's hope that the pain in the foot will go away completely after I am treated.