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by Cindy Hsu
NEW YORK (CBS) ― Jenn Beezwanger was enjoying her first week at Penn State when she had a grand mal seizure and was diagnosed with cancer at 18. After three brain surgeries, radiation and a stem cell transplant she died at 22 years old. To help other children fighting this devastating disease her family created the Beez Foundation. CBS 2's Cindy Hsu spoke with Susan Giardina, Jennifer's mother and Co-Founder of the foundation about ways parents can help each other get through these troubling times.

Tell me about Jennifer and her fight against brain cancer.
I know as Jenn's Mother I am somewhat biased, but Jennifer had a very special love of life. People who had just met my daughter would approach me to compliment me on how warm and caring she was, and how proud I must be to have her as my daughter. Her psychologist, upon first meeting Jenn actually gushed and said "I love this girl!" Jenn had a very traumatic childhood due to major differences with her biological father. These differences resulted in Jenn having the ability to fulfill her dream of attending Penn State University, her family's college.

In January 1998, Jenn went away to college at the Altoona branch of Penn State. After just one week at school, she suffered a grand mal seizure on a Friday night. We received a call from Jenn informing us that she had collapsed and that she was now okay. We insisted that she go to the hospital and get herself checked out. The next morning, after a very restless night over 4 hours away, I received a call from the hospital telling me that ,upon doing a CT scan, it was discovered that there was a "mass" found in my daughter's brain and that my husband, Joe, and I needed to pick Jennifer up and take care of this or she wouldn't be around very long. Imagine driving four hours (one way) with this information weighing upon every thought.

That started the process, which changed everything.

That week, Jenn underwent essentially emergency brain surgery at our local hospital to remove the pressure the tumor was exerting on Jenn's brain. Without this surgery she could have lapsed into a non-reversible coma. The surgeon was able to remove only about 60% of the tumor.

After the biopsy showed the tumor was malignant, we were referred to The Cancer Institute of New Jersey (New Brunswick) and then Memorial Sloan-Kettering Cancer Center. The team of doctors at MSKCC suggested another surgery that would remove a large portion of the remaining tumor.

The medical chronology from the time the tumor was detected goes like this:

January 1998: Tumor detected. Jenn is forced to pull herself out of college for the semester. Jenn has her first surgery, 60% of tumor removed at local hospital

February 1998: Biopsy revealed cancer. Referred to The Cancer Institute of New Jersey then to Memorial Sloan Kettering Cancer Center (MSKCC).

April 1998: Second surgery (at MSKCC). All but 10% of tumor removed.
At this time, Jenn made the decision to wait for any other treatments, e.g. radiation to see if the tumor may have gone dormant, in the hopes that she could return to college for fall semester. By August, tests showed the cancer was growing again. Jenn notifies Penn State that she needs another semester off.

September 1998: Radiation therapy for 30 days (as an out patient at MSKCC). Jennifer loses her hair due to radiation.

January 1999: Jenn returns to college, with tests (MRI's) every 3 months to monitor tumor. No change in tumor for 2 years. She is able to successfully finish her sophomore year of classes at Penn State.

December 2000: MRI shows tumor starting to grow again.

January 2001: Third surgery. Doctors at MSKCC are excited for they are able to remove all cancer cells that are visible to the human eye.

February 2001: The biopsy of the removed cancer cells showed a more aggressive cancer. The Doctors at MSKCC explained that we had exhausted all procedures available with the exception of a stem cell transplant. Since we had no other alternative at the time, we opted to try the transplant. Jennifer's stem cell transplant procedure went as follows: First, approximately 3,000,000 of her stem cells would be harvested, over three sessions, and frozen until the transplant.

After that, she was admitted to the hospital and given massive dosages of chemotherapy to kill all of the fast dividing cells in her body —including the cancer, hair, white blood cells, etc.

This is a very dangerous procedure for with no white cells to fight off infection any slight infection can be deadly. Jenn was kept in isolation for several weeks while her body recovered. The chemo lasted for 2 -3 days. Then after three days of recuperating, the stem cells were re-injected into Jennifer. The stem cells were able to transform themselves into the normal non-cancerous cells that Jenn needed and which were destroyed by the chemo treatment . Some of the cells became white blood cells, some hair, some became whatever her body needed.

About halfway through the entire process, Jenn developed an infection around the port that was installed to facilitate the chemo treatment. This infection traveled to her lungs where it developed into Adult Respiratory Distress Syndrome which essentially shutdown her lung function.

Since she still had no white blood cells, this turned into a very serious problem. She was in intensive care for 4 weeks.

She died on April 30, 2001.

Again Jenn's concern for others came thru. In her written letter to us she requested that her body be donated to science so that the researchers could try and determine why her treatment didn't work. The autopsy revealed that even-though she had undergone the entire regimen of chemotherapy and the stem cell transplant, the cancer had started growing again. So if Jenn had survived the entire process, her battle would not have been over.

How did the Beez Foundation come about?
Again, it was the essence of who Jenn was that helped us make the decision. During one of Jennifer's first visits to MSKCC, we came across an entire room full of children of all ages who were undergoing cancer treatments. Jennifer made the comment at that time that if she could take all of their cancers, so that they could live cancer free, she would. That, and the quality of people that work in oncology, made Joe and I decide that there had to be some way that we could "give back" for all the kindnesses that had been shown. Also, if there was any way we could keep a parent from losing their child, we wanted to do that. No parent should ever have to bury his or her child.

After meeting with doctors at both MSKCC and The Cancer Institute of New Jersey, we learned that one of the reasons that we had exhausted all treatments was because the initial phase of research was not being funded in the area of brain cancer.

Before any researcher can approach the National Institute of Health, or other similar funding Organizations, and ask for major funding for an idea, an initial phase study must be presented with statistics showing that their idea has merit. It is this initial phase of research that scientists need to obtain financing. Even though we are a small regional charity, we felt sure that we could finance this type of research.

It was also important to educate people that brain cancer is the NUMBER 2 cancer in kids. That is second only to leukemia/lymphoma. But, you can survive leukemia more easily than you can survive brain cancer resulting from the enormous inroads being made into leukemia research.

The third element to our mission, Public Education & Awareness, happened because we wanted to make the lives of those afflicted with brain cancer, just a little easier, if we could. And trying to keep the spirit of Jennifer in all we do, most of our fund raisers are family-oriented events.

Who does it help?
Our goal is to make the lives of the families who have a child with brain cancer a little easier. Since our start in 2001, The Beez Foundation has donated over $100,000 to various agencies.
We have paid for more than a year's worth of overnight stays at the Ronald McDonald House in New Brunswick to aid families of children with brain cancer who are being treated in the New Brunswick area, sent kids with brain cancer to Paul Newman's Double H Hole in the Woods Camp, a special camp for children with serious illnesses and enabled a children's author, Ms. Ann Sheridan, to further develop her book, "Bimbo's Buddies," to help children cope with the emotional side of cancer.

The Resource and Learning Center at the Cancer Institute of New Jersey has received money from us for software to enable cancer patients to do on-line research.

In addition, research grants were made to Memorial Sloan Kettering Cancer Center, Cornell University, University of Pittsburgh and Johns Hopkins University. Recently, our grant recipient at Pitt, Dr. Marie Beckner, has informed me that her research project is to be published in the prestigious journal "Laboratory Investigation."

We have accomplished quite a bit in the short time we have been in existence — and all with volunteers! This allows us to insure that the majority of our funds goes to the Education, Research and Patient Services and not overhead.

Not only are we helping cancer patients and their families, but also we like to think we make a difference in the lives of those who volunteer. At last year's Fun Fest, all of the over 75 people who volunteered, thanked us for the wonderful time they had and promised to come back this year. That makes it all worth while.

What do you want parents to know about brain cancer?
Brain cancer is the number 2 cancer in kids, a fact not known by a large number of people and brain cancer is the number 1 cancer killer in kids.

Treating brain cancer is always tricky. Depending on where in the brain the cancer is located will depend upon what bodily functions may be affected like motor skills, vision, hearing, and worst of all memory. The brain cancer surgery can have such an effect on the patient that, upon recovery, they could be a different person. One of the down sides could actually be that the person who comes out of the surgery may not be the same as the one that went in. This was always a tremendous worry to us each time Jenn had surgery. Not only were we scared that she wouldn't survive the surgery, we realized that she might not be our "Jenn" ever again. This alone is one of the most debilitating aspects of parents whose children undergo these operations.

What are the symptoms, treatment and usual prognosis?
One of the major symptoms is a grand mal or epileptic-type seizure. Other symptoms may include; headaches, vomiting, cognitive and behavioral impairment, personality changes, irritability and a change in performance at school.

These symptoms can often be attributed to other childhood maladies or even puberty making brain cancer a very difficult disease for parents to detect without a brain scan. In retrospect some of Jenn's personality changes and her migraine headaches were attributable to her cancer.

Since pediatric brain cancer is the number 2 cancer in children, it is very important for parents to explain all of these symptoms to their family Doctor who may then, by fitting all of the symptoms together, determine that the child may require an MRI scan to test for the presence of a tumor.

Resources for parents?
The best resources for parents are their local cancer center, brain cancer foundations such as the web and ours. Since Jenn was diagnosed, the volume of resources available at hospitals and on the web has become almost overwhelming. Almost every type of pediatric brain cancer is detailed on the web with links to numerous resources.

As with anything else, a parent has to do diligence to insure that the local hospital is up-to-date on the latest treatments and procedures. In Jenn's case we solicited opinions from both Memorial Sloan-Kettering and the Cancer Institute of New Jersey. In addition, we sought other opinions from researchers in South Carolina and Canada. Every case is different and unique and a parent has to conduct enough research to convince them that their child is getting the best possible care.

Big event this weekend!
This Saturday, October 14 (rain date of October 15) is our Second Annual Family Fun Fest and Softball Tournament at the Commerce Ball Park, home of the Somerset Patriots, in Bridgewater, NJ. The Fun Fest includes activities for the kids, a

"Field of Dreams," softball tournament where people can actually be a Big league player for the day, a classic car show in the parking lot and a Ladies Luxury Lounge. Elimination softball games are being held early in the morning at remote locations from the Ballpark. The semi-final and final games will be played on the Patriots Field in the late afternoon.

At noon, the doors open for free admission to the ballpark. Throughout the day there will be all kinds of activities for the Kids that will include:

*Face Painting
*Tattoos
*Pumpkin Painting
*Sand Art
*Spin Art
*Chalk Drawing
*Moon Walk
*Spinning Wheel
*Bean Bag Toss
*Coloring and more

For the adults there is a 50/50 and a raffle for a chance to win a 42" Sony projection HDTV and there will be classic cars on display in the parking lot

Mom will have a chance to relax in the ladies Luxury Lounge where, for $5 a half hour, ladies can go upstairs to one of the Luxury Boxes (compliments of Steven Kalifer, owner of the Somerset Patriots) and enjoy head-and-shoulder massages, hors d'eourves and a quiet escape from the activities on the field.

The Opening Ceremony will include a parade of classic cars around the warning track and will feature Bobby Valli (yes Frankie's brother) singing his song "America" and our "National Anthem." Concessions and some of the activities where the kids take home a gift or photo will have a charge.

The big fundraiser for the day, though, is our raffle of either a 42" Sony HD Projection TV as First Prize or a weekend cruise to the Bahamas as the Second Prize. Tickets can be purchased for $5.00/ticket at the event, or online at our website The Beez Foundation

Final Thoughts?
Other activities/events that we are working on include:
Our "Kaps for Kids" program where we decorate hats for kids who have lost their hair due to cancer treatments. This one aspect of Jenn's treatment will remain the most traumatic. Here was a girl with beautiful long hair that had to have her head shaved for the first surgery. Then as she was just getting her hair back to discover that she had to undergo radiation treatment that would again destroy her new hair. This single event was so devastating that we had to remove all the mirrors in the house until Jenn's swelling subsided and her stitches were removed. So you can see that this program alone holds much emotional importance to us as Jenn would not want any child to have to undergo the complex emotions that haunted her.

This program has enabled us to go National for the first time. Volunteers at a large manufacturer in California have pledged 500 hats. Plans are also underway to host an art exhibition and auction in the spring 0f 2007 showcasing hats that have been decorated by celebrities and local personalities.

This year will mark our fourth annual Toy Drive. Collected toys are donated to all of the local hospitals during the Holidays. The toys also serve as "End of Treatment" celebration gifts for the children at the end of their respective cancer treatment.


E-mail Cindy your thoughts.

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