Halloween is here, and I am reminded of Kelly. Every year she decorated the house inside and out. She loved shopping with her Dad, choosing a pumpkin, sometimes two, and bringing them home so they could carve them up while Mom toasted the pumpkin seeds in the oven. Every year she planned ahead for her costume. Kelly loved Halloween!

Kelly had never worn a store bought costume as her mother, Gwen, was so creative with the sewing machine. Mother and daughter planned out a new costume every year. One time Kelly was Princess Leia, another year she was a ballerina, the next, a cat, and the next time Kelly dressed as Batman. That was a difficult costume to make. The year before last, she missed Halloween completely, though Kelly joked that she was dressed as a patient. She had been in the hospital very ill with the effects of her long time battle with Osteosarcoma.

She didn't quite miss Halloween entirely, though. The nurses dressed up, decorations were on the wall, even candy was distributed, and Dad brought a small carved pumpkin. But, it was not the same as answering the door when just before sundown handing out candy to the little kids. It was not the same as wearing her own hand made costume. It was not the same as going out later to go trick or treating with her friends.

So last year, Kelly wanted to make up for the previous year. When she began in early September to talk to her mother about making a new costume, Gwen worried. Would Kelly make it to Halloween? The doctors didn't think so. Though Kelly had been in remission for a few months, and her hair had grown back in, the bone cancer had already taken over her daughter's body again, and this time the metastasis was everywhere. There was nothing more the doctors could do.

In a way, Gwen admits she was a little bit relieved that the doctors didn't continue to try to force any other drugs through Kelly's veins. She had seen too many parents pushing for a last ditch effort. She says she wanted her daughter to have a chance to just "be".

Gwen’s heart felt like it had been ripped out of her ever since the diagnosis had been made. But, as summer began to burn out, so did Kelly. So much pain, so much suffering, her daughter had grown so thin. She just couldn't watch her child continue to suffer like that anymore. Every moment, every day, every minute, every breath that Kelly took, Gwen was right there breathing it with her. Gwen had left her job to spend whatever time Kelly had left.

Kelly's Dad knew the only thing he could do was to keep working to keep a roof over their head, to maintain the medical insurance which barely covered Kelly's medical expenses. Neil lived with a certain amount of guilt that he couldn't be there with his wife and daughter. Neil felt that being separated from his little girl when she needed him was almost worth it, though, just to see the joy on her face every evening when he came home.

Regardless of the doctors prognosis, Gwen sewed the Angel costume Kelly hoped to wear. “Kelly wasn't oblivious of the irony of her costume choice. “Barb says, “She knew her time was short. We’ve never hidden anything from her. Maybe it was a symbolic expression of her faith that she would soon be in heaven. I never thought to ask her. I just wanted to make her happy. I would have done anything she asked, though she seldom asked for anything.”

Right from the beginning, when Kelly’s leg hurt her so much, and visits to the doctor ended up in scans and tests of all sorts, Kelly wasn’t the kind of child who behaved fearful and tearful. “Right from the day when we learned the diagnosis. Kelly acted so grown up, asking the doctor questions we never thought to ask. She went through her first surgery to remove the tumor and chemo more bravely than her mother and I.” Neil says.

Within 18 months, the bone cancer recurred and it became necessary for amputation of Kelly's leg. She was very much a part of the decisions to be made. Gwen had cried while Kelly comforted her. "Mom, it's only a leg. Besides I was never good at ballet. Remember?"

Kelly's successfully completed Physical Therapy with her new leg. One could look at Kelly walking down the street and never guess of her medical history at that time. Finally, the nightmare seemed to be over as her health returned. Kelly was wise beyond her years. Cancer seems to do that to kids. In the playroom in the hospital kids occasionally talk with one another about what is happening to them. But, mostly they play. And sometimes they lay in the hospital bed looking clear as a diamond, while blood products drip into their veins to repair the damage done by the poisons meant to kill their cancers. And then the time comes when nothing more can be done, and the parents take their child home to live out their time, as Gwen and Neil did.
They set up a hospital bed in the living room facing towards the big picture window giving a view of the front yard and street. Sometimes Kelly counted the falling leaves and when Dad came home she asked him to bring in a few. That was about the time that Neil went out to the garage, dug out the Halloween stuff, decorated the yard with Frankenstein, and spider webs. He brought in a pumpkin and carved it at Kelly’s bedside as she gave directions.

Halloween night, the children came to the door to shout “Trick or Treat!” and stared in awe when they came in to collect their candy from the beautiful angel quietly smiling at them from the bed all decorated to look like a cloud.


Gwen and Neil couldn’t bring themselves to remove the Halloween decorations even as the snow covered them. Kelly had lasted another two and a half weeks.

October 22, 2007

New Initiative Funds Rhabdomyosarcoma Research

The newly established Miles Alpern Levin Initiative for Rhabdomyosarcoma Research is funding research into the development of new treatment options for patients with recurrent rhabdomyosarcoma (RMS). The Initiative has been funded through a $1 million commitment in memory of Miles Alpern Levin, thanks to the generosity of Dr. Nancy Alpern Levin and her parents, Robert and Marjorie Alpern. It will support the collaboration between Dr. Leonard H. Wexler of Memorial Sloan-Kettering Cancer Center's Department of Pediatrics, and Dr. Neal Rosen of the Sloan-Kettering Institute (SKI).

RMS is a fast-growing tumor which accounts for about half of the soft tissue sarcomas in children. Sarcomas are cancers that develop from connective tissues in the body. RMS is a cancer made up of cells that normally develop into skeletal muscles. Any muscle in the body may be involved. For patients whose tumors recur or whose tumors have spread to other areas of the body, Memorial Sloan-Kettering is leading efforts for innovative treatment strategies, including novel combinations of chemotherapy agents, radiation therapy, and surgery.

Dr. Wexler is an internationally recognized expert on the treatment of rhabdomyosarcoma and Dr. Rosen is a premier translational researcher with special knowledge in the area of mTOR pathway inhibitors.

By collaborating, these researchers are seeking to develop new, biologically targeted therapies for recurrent rhabdomyosarcoma. The most promising of these approaches is targeted therapy against the Type 1 Insulin Growth Factor Receptor (IGF-1R) and its downstream effector pathways. Preclinical research has shown that this agent is singularly effective against RMS, and plans for the drug's continued development would be to combine it with a mTOR pathway inhibitor, or with chemotherapy, or both, and to begin planning for clinical trials. This is brand-new territory in therapeutic drug discovery, and it is hoped that the collaboration between Drs. Rosen and Wexler will offer new treatment options to patients and generate considerable excitement in the pediatric sarcoma medical community.

The late Miles Alpern Levin, son of Dr. Nancy Levin and Mr. Jonathan Levin, and a grandson of the Alperns, inspired the family to make this philanthropic commitment though his own battle with rhabdomyosarcoma, to which he succumbed on August 19, 2007. Since he was first diagnosed with RMS in 2005, the 18-year-old wrote about his experiences as a cancer patient and published the pieces through a web blog. Mr. Levin reached thousands of online subscribers worldwide with thoughtful musings on life and hopeful messages such as "Keep Fighting, Stop Struggling

Do you associate certain colors to a season?

Does October bring up black, orange and maybe a ghostly white?

Or does October come up pink for you?

Why Pink?

October is Breast Cancer Awareness Month.

Aside from all the Halloween colors in the stores, and the first blooms of Christmas, you are likely to see a lot of Pink. Pink T-shirts, pink phones, pink shoes, socks, purses, baseball caps, pens... pink jewelry of all sorts. You name it. I've got several articles like that, all with a little breast cancer pink ribbon insignia somewhere on it. Not because I have breast cancer, not because a family member does. Where ever you look, the stores have displays of these items. The package inserts state that a portion of your purchase goes to Breast Cancer Research.

Are you thinking I am way off base to be writing about Breast Cancer on a Sarcoma Blog? It's true that most Breast Cancers are Carcinomas. Sarcomatous Breast Cancers are rare, but they should not be ignored, or forgotten.

Cystosarcoma Phyllodes

Primary osteogenic sarcoma of the breast

Solitary neurofibroma in the male breast

Desmoid tumor of the breast

Adenomyoepithelioma of the breast

Chondroid Carcinoma of the Breast

Metaplastic carcinoma with chondroid differentiation


I recall when Jeff first contacted me about his wife's Chondrosarcoma of the breast. I thought, perhaps he was confused. I certainly was. I had never heard of such a thing. But, I had never heard of Chondrosarcoma before I was diagnosed with it, either. I just couldn't imagine cartilage tissue growing there. So, I asked a lot of questions trying to pinpoint why he thought his wife had Chondrosarcoma of the breast.


Jeff had dedicated a great deal of time and energy learning what he could about it, and believe me, there was very little information at the time, (and probably little more than that now). Fortunately, his wife was in the hands of an excellent team of Oncologists at one of the top Cancer Centers, Memorial Sloan Kettering. If anyone could verify such a rare diagnosis they could.

Jeff's wife held out for a very long time, but finally, the day arrived when she could no longer find a cure and faced the inevitable. Through the years of her struggle, I learned what a very special woman she was, and marveled at her husband's commitment to find whatever methods he could in order to help her.

I have never known anyone, personally, who had breast cancer. So, she's my idea of the "breast cancer woman" role model. No one ever wants to have that kind of identity, I am sure, but when I put on my pink breast cancer awareness pin, or socks, or cap, I am always reminded of Jeff and his wife, and wonder if any of the donations for breast cancer go to that one small percentage of Breast Cancers called that fall under the category of Sarcoma.

Most people think that Ewing's Sarcoma is a kids cancer, if they know about Sarcomas at all. Imagine the disbelief of Mia and Drew when the Doctor told them that Drew had Ewing's in his pelvis. Needless to say they went for a second opinion at University of Chicago hospital.

Drew felt so discouraged not only with the diagnosis but with the treatment. It was not as simple has he had thought. After all he was a pretty tough guy working as a fireman. He figured he could manage surgery, chemo and radiation if they were necessary. And what's a little hair loss, anyway?

But, Mia was beside herself to hear her husband say that he couldn't take much more of being so sick with the chemo only after having reached the halfway point. Drew wanted to give up. The doctors had tried numerous drugs to control his nausea symptoms, saying that sometimes a patient just doesn't respond well, where others seem to handle it easily. There's no telling why the differences.

Drew was also receiving radiation at the same time. He was so exhausted and weak. No wonder he was so discouraged. Drew felt ashamed that he was being "such a wuss" as he called it. He couldn't help but to compare himself to all the children who were receiving the same treatment for their Ewing's. How did they manage it? He wondered.
Mia had a hard time trying to keep a positive attitude and to keep Drew's spirits up. She really wanted him to understand their was a light at the end of the tunnel, and he could get his health back. If only she could get him to hang on and not give up.

Fortunately, about this time, the doctors hit upon a combination of medications to help Drew keep his food in his stomach where it belonged, and the other meds he was taking were now being properly absorbed. Mia was so happy. The anti-depressants Drew needed so badly a month before were now helping him to be more his old self.

Still, Drew had problems even wanting to eat. Things just tasted so funny, it was hit and miss. Finally, they were able to discover with a lot of trial and error, that Drew could tolerate toast, tea and canned pears. That got him through the rough spots. "I don't know what I would have done without her." Drew says. "She was so patient cooking one thing after another to have me try them."

Pretty soon Drew's appetite improved and he could begin to enjoy food again. Unfortunately, another complication came along to spoil the moment. Mouth sores. "Why doesn't anyone ever tell you to expect these things ahead of time, so you can make plans?" asked Mia.

Still, Drew sometimes came home from treatments, retired to the bedroom and just curled up with the shades drawn. Then, one of Drew's firefighting friends from work called for the umpteenth time, and Mia couldn't give anymore excuses that he couldn't have visitors. So, Drew's good buddy Matt, dropped by the next day.

Funny how having a friend around can change one's perspective. Soon Matt had Drew laughing about some experience they shared while on the job, and then sat watching sports on TV together. Then, Mia realized that keeping Drew so isolated wasn't a good idea. She decided to invite at least one friend over every couple of days to help her husband to get through all this, and draw him out of his shell.

"We took appropriate precautions in order to protect Drew from getting infection." Mia says, "Once I had organized having friends over, it helped so much to distract us from spending so much time worrying about the struggles we were facing. And it certainly gave me a chance to just take care of myself for a while. I didn't know how much I needed to do that!"

Even though Drew has since been in remission, and continues to have good scans, he and Mia are now involved with the Ewing's online support group. Drew learned that he needed to put that chapter in his life behind him, but still needed to do something constructive about it. Drew feels good to be able to help other adults facing the same issues he did, including a woman of 65 who had Ewings, too.

Drew has returned to his job as a Firefighter and continues to enjoy helping others in that capacity. "Now I can look at things in another way. I am not just putting out fires, rescuing people, but now I understand what it is like to feel so helpless and discouraged. I can now relate, and I think, say the right things to give hope."

Orville did not go through his diagnosis alone. No, at age 57 his whole family was involved. Eleven years previously, Orville had a exostosis due to MHE removed from his sternum in a quick one day outpatient surgery. He never returned to his doctor for follow up. If he had done this, he would have learned that it was not a benign tumor as originally thought. Orville had better things to do with his time.

Chondrosarcoma is sometimes referred to as an indolent cancer, which means it can be quite slow growing. Orville's original had been a grade 1. So, when he began to have increasing episodes of chest pain that did not resolve with antacids, his family began to worry. His elderly mother, his wife, his grown up sons and daughter, all kept after him to go to the doctor. They feared the worst. They thought, maybe, he would have a heart attack. It never occurred to anyone that he might have cancer. When, Orville finally went for a medical exam and scans with the family physicican, both his wife and daughter were present for the results. Suddenly everyone was in a quandary.

"Cancer? How can that be? He is healthy as a horse! Look at him!" The doctor had to agree. Orville was the picture of good health. All his blood tests came back normal. This is common among those with chondrosarcoma. Unlike other cancers, it is not debilitating. But, the radiologist kept insisting that Orville be referred outside of their community to a University Orthopedic Oncologist in a city four hours away. Orville wrote it off. But, his wife and daughter reported back to the rest of the family. They were frightened by the possibilities. Someone remembered that, years ago, he had a surgery for a benign bone tumor. Soon, they put together the fact that if it was an Orthopedic Oncologist that he was supposed to see, and he previously had a bone tumor, then perhaps this was a bone cancer.

That was terrifying to everyone. "Bone cancer! That's the worst kind of cancer to have!" They all had heard stories of friends of friends or someone's relative having (secondary) bone cancer and dying a horrible death. Unfortunately, these kinds of stories seem to perpetuate themselves without those involved getting the facts. Chondrosarcoma is a primary bone cancer.

One by one each member of the family approached Orville about their concerns. He got pretty angry at the bunch of them for imagining the worse. He was, after all in the best of health. Hadn't the doctor already said so? His heart was good, the pain was probably a strain from working so hard. Why should he take a day off from work to drive all that distance to see a doctor who was going to charge an exorbitant amount of money just to tell him it was another benign tumor, just like before? He didn't have time to have another surgery no matter that it would be a quick procedure. He remembered it had taken a while last time, before he had gotten back up to speed.

His daughter got on the internet and researched all she could about bone cancer. She read website after website, many incomprehensible with their medical mumbo jumbo, and many which promised a cure if the right diet was followed. So, Orville's wife began to change the way she cooked, and hoped for the best. Orville didn't mind the changes. He was having problems with feeling comfortable after a heavy meal, so the lighter fare his wife gave him was easier on him. Little did he know the tumor on his sternum was growing inward and pressing upon his esophagus, and stomach. No wonder he felt overly full after eating.

It wasn't easy for the family to let go of their worry, so they elected Orville's sons to get after him and insist he go to the doctor. After resistance from them, the guys finally agreed to convince their father to go to the bone specialist just to placate their mother and sister.

Everyone had kept the circumstances from Grandma, knowing she wouldn't handle it well, if she even suspected her only son had a cancer. But, the big trip to the specialist was not something easy to hide from her. She was suspicious and knew something was "up".

Orville's appointment lasted three days, while he underwent one test after another, after another. His wife and daughter worried through those days. On the third day, they all met with the surgeon who explained the diagnosis, outlined the surgery, and answered their questions.

On the way home, Orville did NOT want to talk about it! The women rode in frightened silence. The next morning they called other members of the family after Orville left for work, so they could tell them what the doctor said. Unfortunately, it all came out a jumble, as both had understood the doctor in different ways, and no one in the family had ever been sick enough to learn anything medical. It was easy to confuse things. Within a very short time, the facts were askew, and all the family was agitated and fearful. Still, Orville refused to discuss anything with any of them, even when one son found out more about it, and learned some of the good things about the chondrosarcoma diagnosis. Surgery was the only thing needed, no chemo, no radiation. And best of all, it's got a better outcome than most cancers.

Eventually, the day came for surgery. The family had all come along and sat in the waiting room for many hours that day, worrying more and more as the clock ticked away. When the surgeon came out and spoke to the family he explained how the surgery was a lot more extensive than originally thought. In order to have clear margins the whole sternum had been removed, and Orville essentially had to be held together with metal wire, and mesh. The surgeon looked so serious when speaking with the family, they read between the lines, and all believed that Orville's days were numbered.

Orville's recovery was not as easy this time as he thought it would be. His pain levels were more than even he could tolerate, so he took the narcotics ordered for him. He returned home in a week and insisted on going back to work right away. Staying home with the family was not an option.

It was not long before the strain upon the family took it's toll. Grandma knew everything by this time. She became seriously depressed. Orville's daughter suffered panic attacks, and his sons just couldn't hang around. Orville's wife had insomnia and watched her husband's chest rise and fall as he slept the sleep of the drugged.

When it was time to return to the doctor again, the family all traveled together. Orville did the driving. The doctor had some new things to say that no one had expected. Orville's tumor was so aggressive, that it had an osteosarcoma component to it. Even though radical margins had been taken, the doctor advised chemotherapy. The family was stunned. When Orville's wife broke down in the doctor's office, and then, his daughter, he could see that they all needed some deeper understanding of how to cope with the situation.

A social worker was called in who coordinated arrangements to be made for the whole family back in their own community. They attended local cancer support groups for caregivers, and realized how the hysteria had gotten out of hand. They learned that Orville's denial and anger was a common response to a cancer diagnosis. He was able to get counseling, and anti-depressant medication to help him cope. As the surgical pain subsided and Orville's body healed, he began to feel more hopeful that he would survive. After all, that had been the fear that drove him to tell everyone he didn’t want to talk about it. And now, he would keep his follow up appointments for as long as the doctor suggested.

"I still don't like to take time off work. It is so satisfying to me. But, I realized that you only have one life, and this has made me look at it in a whole different way," Orville says. "Just like they say, I have a new lease on life! Now, I take time to be with my family more than before. Life is for living, not just working! And, you know what? I’m actually enjoying life a lot more now, too."