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Tuesday, October 20, 2009

Endowment Income - What's in Store for 2010

Katie's oncologist is Dr. Julie Park. Her specialty is neuroblastoma, one of the cancers for which Katie's tumor was initially mistaken. Dr. Park is a highly respected researcher in the field. Dr. Park is our medical advisor on the Katie Gerstenberger Endowment for Solid Tumor Research.

Katie had a biopsy when she was admitted to Seattle Children's Hospital. A biopsy is a surgical procedure in which a small sample of tumor is removed for testing. The purpose is to diagnose exactly what sort of cancer the patient has, so that the treatment can be tailored to wipe it out. Katie's tumor defied pathological diagnosis. At first, it was thought to be a Wilms' Tumor. Then it was thought to be neuroblastoma. After Katie's first round of chemotherapy, Dr. Park began to suspect that it wasn't a neuroblastoma after all, but adrenocortical carcinoma (or adrenal cortical carcinoma), which is much more rare than either of the other two.

Dr. Park conferred with experts in pathology. She communicated with oncologists at St. Jude's Children's Hospital in Tennessee, where the leading research on adrenocortical carcinoma is being performed by Dr. Rodriguez-Galindo and Dr. Rubiero. They shared their protocol for treating this rare disease with Dr. Park, and she changed Katie's chemo regimen to follow the St. Jude's team's protocol. Although the most current treatment was given, and the primary tumor was removed after 5 rounds of chemotherapy, the cancer recurred within a few months (in spite of follow-on drug therapy, as well). The thinking about adrenocortical carcinoma is that it is a slow-growing cancer; this was clearly not the case for Katie! Obviously, more needs to be known about pediatric cancer, which is the main reason why Katie wanted her Endowment to fund solid tumor research. Katie's preference was that it fund adrenocortical carcinoma research, but since that is such a rare disease, her Endowment funds solid tumor research in general, which should benefit all solid tumor cures, in the long run.

Dr. Park plans to use this year's endowment distributions for travel to a conference: the international Advances in Neuroblastoma Research meeting. The meeting will take place in June, 2010 in Stockholm, Sweden. Dr. Park will participate in the exchange of information among worldwide investigators who are studying neuroblastoma biology, diagnosis, prognosis, and therapy.  Dr. Park will be able to share data with cancer investigators who are working at other institutions, and then bring what she learns back to Seattle Children's Hospital, where she will continue her research, and her work as an attending physician.

If you have any questions, please leave them in the "comments" section that follows this posting, and I will reply as soon as possible. Thank you again for your support of Katie's Endowment!

Tuesday, September 15, 2009

Mini- Update on Financials at the Endowment

Here is some information that I received in response to my questions about the Katie Gerstenberger Endowment for Solid Tumor Research at Seattle Children's Hospital.

Question:  What is the current principal amount in the Katie Gerstenberger Endowment for Cancer Research?
In July of 2008, the Katie Gerstenberger Endowment at Seattle Children's Hospital had a principal value of over $79,480.00. Seattle Children's Hospital is nearing completion of its annual financial reports on endowment performances (this updated information will be available soon). Individual endowments (like Katie's) are pooled with Children’s United Endowment Fund (UEF). Due to last fall’s dramatic stock market downturn, Children’s UEF was negatively affected.

For the one-year period from April 1, 2008 to March 31, 2009, Seattle Children's UEF declined by 29%. In contrast, the Standard & Poor’s 500 declined 38% in the same time period, which means that the UEF declined less than this benchmark index. The Good News: Recovery in the Unified Endowment Fund, from March 31, 2009 to June 30, 2009, was 15%.

Question: How much money has Katie's Endowment generated for cancer research in the past year?
Like the overall Children’s UEF, Katie’s endowment principal has declined in value; even so, the Katie Gerstenberger Endowment generated income of $2,494 between April 1, 2008-March 31, 2009. The principal remains in the endowment, and its income is used to fund research.

Since Katie’s endowment principal has declined in value, the distributions to support cancer research will be correspondingly smaller as we go forward. To recover the original value of the principal, Children’s will continue its prudent and broadly diversified investment strategy.

Question: What else can be done to help?
You can contribute to the endowment, and encourage family and friends to do the same, so that the principal recovers its original value faster. Simply put, more principal means more income generated, which equals more research toward finding cures for cancer.

Thank you for your support of Katie's Endowment for Cancer Research!

Information from National Institutes of Health on Adrenocortical Carcinoma

If you are interested in reading more about adrenocortical carcinomas, you can click on this link, which leads to an article on the topic. On the right side of the page is a listing of related articles. The National Institutes of Health website has information on a wide range of cancer topics. Click on this link if you want to search the NIH site.
Most pediatric cancers are viewed and treated differently than cancer of the same name in adults, because children respond differently to treatment.

Wednesday, June 17, 2009

The Katie Gerstenberger Endowment at Seattle Children's Hospital

Dear Friends,

This blog was created to keep you up to date on what is going on over at the Katie Gerstenberger Endowment for Cancer Research (solid tumors) at Seattle Children's Hospital.

Katie was a vibrant, active, intelligent, kind, funny sparkly girl of 11 when she was diagnosed with a huge tumor in her abdomen. She had no symptoms until about 3 weeks before her diagnosis, when she began to exhibit the symptoms of a virus. After 3 weeks of clinic visits and tests, the horrendous news came that she was in grave danger of losing her life, and had to be admitted to the hospital immediately. Experts were consulted in various places around the world to diagnose her specific type of tumor, and to determine the best course of treatment for it.

We spent the next 5 months supporting Katie as she endured 5 rounds of toxic chemotherapy, as well as an 18-hour surgery to remove the tumor (and a kidney, adrenal gland, inferior vena cava and a lobe of her liver). It's a miracle that she survived this surgery, and she spent 6 weeks in the hospital, recovering from it. She then was allowed to go home to recuperate further, and began to take a pill-form of "maintenance" chemotherapy. By early summer, she was strong enough to go to the American Cancer Society's Camp Goodtimes West (on Vashon Island) for a week with her brother, David.

Sadly, a couple of weeks after camp, Katie began to suffer from severe pain. We took her to the clinic, and then to the hospital for a CT scan, & upon reviewing it, her doctor discovered another large tumor - but this one was inoperable. We took Katie home to begin hospice care.

The one bright spot during this time was that Katie's dream of being a bridesmaid came true. She was the maid of honor for her cousin Andrea's wedding to Mike Cunningham. Katie LOVED being their maid of honor. We treasure those memories.

We (Katie's family) created this endowment in her honor, and we asked Katie what she wanted the funds to be used for. Her answer was that she wanted the endowment to support research to find a cure for solid tumors such as the one she had, which was adrenocortical carcinoma. She knew that the endowment was started before she passed away. The principal of the endowment is preserved, and the income is collected and used to fund research.

When Katie passed away, we asked people to donate to her endowment instead of sending flowers to us. The did this very generously, and many people have continued to support the endowment. It was up to nearly $80,000.00 last summer, before the stock market took a tumble. It is now near $66,000.00, and Dr. Julie Park (Katie's oncologist) is the one who advises us on where the income can best be used to carry out Katie's wishes.

If you would like to know more about the Katie Gerstenberger Endowment for Cancer Research, please leave a comment here. If you would like to donate to Seattle Children's Hospital in Katie's memory, please click HERE.