By John Morgan, Spotlight Health
With medical adviser Stephen A. Shoop, M.D.

There's an old saying that "a stitch in time saves nine." When it comes to promoting the Quilt of Dreams campaign for St. Jude Children's Research Hospital, singer Amy Grant knows that a stitch in time may actually save lives.

"I signed on immediately to do this because I've been working with St. Jude for nearly ten years, and I know how many children this incredible hospital saves every year," Grant says. "Last year the Quilt of Dreams raised nearly one million dollars. The money we raise now will help save many more children tomorrow."

Founded by the late entertainer Danny Thomas, St. Jude is a unique children's hospital; no child will ever be turned away because their family cannot afford treatment.

"Awareness is vital," states Grant, who collects quilts. "People need to know how incredible St. Jude is and that if someone has a sick child, they know where to take them. Parents have to know about St. Jude for it to be an option."

And there has to be funding.

Supported by the American Lebanese Syrian Associated Charities, St. Jude not only provides treatment but travel and living arrangements. From Target House to Ronald McDonald House, families are provided with accommodations and meals so they have a place to stay comfortably with their child during what are sometimes lengthy treatments.

"I imagine that having a very sick child is a very lonely, isolating feeling," Grant says. "St. Jude allows parents to focus on their child and nothing else and provides a community to help ease this sense of being all alone. You cannot imagine what a blessing this is for families unless you've been to St. Jude and talked to them. They will each tell you what a miracle this hospital is for them."

Grant hopes even more "miracles" will happen this year, because she knows St. Jude researchers are nearing breakthroughs on many medical fronts. "Curing childhood cancers would be a dream come true for every parent and every patient," she notes.

Sponsored by Hancock Fabrics, last year more than 3,500 quilts were made and donated. This year Hancock has designed 37 new fabric patterns based on the St. Jude children's dreams. A portion of each sale of each yard of fabric will be donated to help support the renowned hospital's research and treatment of childhood illnesses.

Located in Memphis, Tennessee, St. Jude has invested in establishing an unsurpassed 'dream team' of researchers. According to Essential Science Indicators, the hospital's scientists and doctors publish 20 times more clinical research studies, per patient treated, than all other American cancer centers combined.

Cancer Nightmare

Among the harder cancers for these researchers to defeat has been medulloblastoma, the most common malignant brain tumor that occurs in children.

"About one in 600 children will get cancer," says Richard Gilbertson, Assistant Professor of Neurobiology at St. Jude. "About 20% of those will get brain tumors. As the most common brain tumor, at St. Jude we'll see about 30 to 40 new cases of medulloblastoma every year."

Medulloblastoma is a brain tumor that occurs in the cerebellum, near the back of the head. Unlike most brain tumors, which remain confined to the head, medulloblastoma is a very aggressive disease that spreads throughout the brain, down the spine and to other parts of the body.

The average age of diagnosis for medulloblastoma is six years. Detected by MRI or CT scan, medulloblastoma is slightly more common in boys than girls, with common symptoms being:

• Headache
• Vomiting (especially in the morning)
• Balance problems -- children have trouble walking straight up, often falling to one side

Promising Research

Once uniformly fatal, St. Jude's now cures up to 80% of medulloblastomas in children over three who have no evidence of metastatic disease.

But the news is nightmarish when this aggressive tumor has spread.

"A metastatic patient has about a 50/50 chance of survival," Gilbertson states. "And if the treatments fail the child, the outlook is extremely poor - the chance of survival is 10% or less."

The gold standard for treatment includes neurosurgery, radiation therapy and chemotherapy. After surgeons remove as much of the tumor as possible, patients are given high dose chemotherapy and high dose radiation to the brain and spine.

"It's a bit of a double-edged sword," Gilbertson explains. "The aggressive treatment is designed to match this very aggressive disease, but it is also exceptionally damaging; patients lose IQ and have endocrine and growth problems. The disease is horrible, but many patients achieving cure are left with long term side effects."

But St. Jude researchers are trying to find more quality of life-sparing treatments.

In a new published study, Gilbertson and his colleagues have identified a possible biomarker that can alert doctors to which patients have more aggressive disease and thus need aggressive treatment.

"We looked for a number of abnormalities in the tumor and one of them is a protein called ERBB2," Gilbertson explains. "Despite good prognoses, we know that we're still going to lose 20% of patients. We just don't know who they are. But now if we look at their ERBB2 levels we may be able to identify who will do better. If a patient's ERBB2 level was zero - they did better, none of them died. If the patients had the protein, then they did much worse - half of them died."

This means Gilbertson can potentially tell doctors which kids should get aggressive therapy and which can be spared the more damaging treatments.

The next phase of the study is currently running and Gilbertson says his lab will be examining ERBB2 levels as well as performing about 20 other molecular tests on the tumors. The goal is to better identify the patients who will do well and those who will do badly so that treatments can be tailored to each individual patient.

Dream Team

Identifying biomarkers also helps develop new treatments that one day might eliminate the need for the destructive radiation and chemotherapy protocol.

"With these molecular tests, we also hope to identify new targets for developing new medications," Gilbertson states. "The ERBB2 receptor is important in many other cancers, including breast and ovarian cancer, so we are hoping to develop new drugs that target this receptor. What we're finding is that there are some drugs which can inhibit the ERBB2 receptor in medulloblastoma."

Gilbertson says the unique campus-like atmosphere created by Danny Thomas' vision is what inspires researchers like him. "The very reason I came to St. Jude is because there really is an integrated lab and clinic here," he says. "We see the children every day. It motivates us all. Sure, we have unrivaled facilities, but most importantly we work together. It is very clear what our mission is here."

If it takes a village to raise a child, then it takes a village like St. Jude to heal a child.

"It is amazing how much can be accomplished when a massive number of people are willing to do a little something," says Grant, who is currently writing new songs for her upcoming CD. "The Quilt of Dreams is a metaphor for exactly the way everyone has come together piece by piece, each in a small way, to form the quilt of miracles that is St. Jude."

• St. Jude Children's Research Hospital

Spotlight Health is the leading creator of celebrity-featured health-issue awareness campaigns, connecting consumers with impassioned celebrities whose personal health battles can open eyes, dispel myths and change lives. Spotlight Health helps sufferers and caregivers meet the challenges of difficult health circumstances with understandable, in-depth medical information, compassionate support and the inspiration needed to make informed healthcare choices.

Created: 4/17/2004  -  John Morgan & Stephen A. Shoop, M.D.
Reviewed: 4/17/2004  -  Donnica Moore, M.D.