Saturday, October 25, 2008

So the good, the bad and the ugly, where should we start?

How about the good? Hannah had her first sleepover since she was diagnosed at her friend Mary Kate's house. All in all, she did very well. I was half way expecting a call during the night, but she was fine! It's nice to do something so normal for a change.

How about the bad? Well we're hoping it's not bad, we're praying it's not bad, it just can't be bad. Hannah seems to be having an increase in her stomach issues in the morning. Since our last clinic visit, she has vomited probably 4 times. She has slight headaches, but nothing significant. The doctors have decided to move up her MRI from next month to this month. It won't hurt, and we might as well check it out. They told me that many medullo kids have nausea issues for years after their treatment, but because Hannah's issues seem to be increasing, they might as well just check it out. Her MRI is scheduled for Tuesday at noon, then we have her monthly checkup at 4pm. We will have the MRI results by then. So, between noon and 4pm, I'll be doing everything I can not to think about it. I'll have Hannah with me, so that will certainly be a distraction. Sometimes I think she never stops.

How about the ugly? Well, this is ugly.

I went back to the hospital on Friday to have my pic line changed to my upper arm. It has been so painful the way it was put in. The doctor tried multiple times...multiple... and couldn't get it in anywhere else. He finally ended up just adjusting my current line, after about an hour of multiple pokes, and numbing injections. I was so numb, I couldn't feel my fingers. I just closed my eyes and kept thinking "Hannah, Hannah, Hannah, this is NOTHING compared to what Hannah had to endure."

One more thing to share tonight. I am lifting this from Coleman's website. I found it very insightful myself, interesting. I want to point out that like Peggy, Coleman's mom, I'm not asking for any donations to one group or another, just making you aware of some interesting information as to where our money goes when we donate. This is by no means a comprehensive list, but these are some of the most popular places to donate. I had posted some information earlier this year about American Cancer Society, this information here is a bit more comprehensive. Thank you Peggy and AJ's dad, Bob.

A HUGE thanks to Bob for his dedication and hard work in gathering this valuable info! Please read what he’s gathered…AND above all, please join in helping make a difference. There are so many things you can do right from where you are sitting now… PLEASE join click and go to PeopleAgainstChildhoodCancer we need all the help we can get!
***After you read it, you can make up your own mind.***
Taken from Aj’s page- Bob writes….
Prior to Fathers Day 2007, I had not thought how funding for cancer research worked. That all changed. I wanted to share some facts, thoughts and observations based on my experiences and research. I only seek to inform. I will not suggest what charity you should support. But, unless the funds are directed towards the right research, PAC2 will only continue to grow, and I want to shut it down. Let's just look at a few of the big boys that are competing for your money.

Let's start here - Hospitals
When a child is treated, the hospital incurs costs and produces a bill. The bill covers labor (docs, nurses, admin, etc), supplies, new equipment and other operating costs, and, if it has a facility, research. Obviously not all hospitals have research labs, and the size and funding varies.
The bills may not cover all these costs or the hospital may want funds for new equipment, research or new buildings, so hospitals have a fundraising arm. If the facility has a research facility, research may be into cures and treatment of any disease you can imagine. Some may go towards cancer research, both adult and childhood cancers. So, if you give to XXX Hospital, your money is directed towards many various causes, an unknown portion related to childhood cancer research.

OK, how about the biggest (baddest?) kid on the block? The American Cancer Society.
The mission statement of the American Cancer Society (ACS) reads: "Founded in 1913, the American Cancer Society (ACS) is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. With more than two million volunteers nationwide, the ACS is one of the oldest and largest voluntary health agencies in the United States. "
Many chose to become involved with the ACS fundraising events, including the "Relay for Life". The funds collected by the ACS are used for many causes. The chart shows the various things supported (from the ACS 2006-2007 Fiscal Year).

Looks black and white to me. The numbers speak for themselves with regard to the funding for childhood cancer, but just to be clear, 2.96% of funds are directed towards the entire suite of childhood cancers. Imagine you participate in a Relay-For-Life. You raise $2,000. $200 (10%) goes to admin, fundraising expenses take another 22%, or $440. Of the remaining $1360, 2.96%, or $59 of the that original $2000 you raised will be directly targeted towards childhood cancer.
Overall, Charity Navigator gives ACS 2 of 4 stars, same as last year. For fundraising efficiency, ACS receives 1 of 4 stars, same as last year. John Seffrin, Chief Executive Officer earns $619,551 or 0.06% of expenses. Program expenses (what it spends on the programs and services it exists to deliver) are 68%, admin 10% and fundraising expenses 22%. Total revenue last year was $1.029 Billion.
Why, when less than 3% of the funds are directed at childhood cancer, do we see so many childhood cancer victims in the ACS literature?
(I know I will hear the "well research into adult cancers can benefit children" argument. Well, most adult cancers do not occur in children. And simple downsizing of adult doses is where we are at now, and the long term consequences have been demonstrated time and again and again and again to be simply unacceptable. We need targeted research! More on that to come.)

Another contender? The Leukemia and Lymphoma Society

From its website: "The Leukemia & Lymphoma Society (LLS) is the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. The mission of LLS is to cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. Since its founding in 1949, LLS has invested more than $600 million for research specifically targeting blood cancers."
I am sure that many of you have had excellent experiences with the LLS. Many chose to become involved with the LLS fundraising events, including the "Light the Night" and "Team in Training". The funds collected by the LLS are used for many causes. The chart shows the various things supported (2006 data). I could not locate data on funding directed to childhood cancer. But, the chart shows 26.7% is directed at research. How much of that do YOU think is directed at childhood cancer research?
Overall, Charity Navigator gives LLS 3 of 4 stars, same as last year. For fundraising efficiency, LLS receives 2 of 4 stars, same as last year. Dwayne Howell, the President, CEO earns $494,867 or 0.21% of expenses. Program expenses are 72%, admin 10% and fundraising expenses 18%. Total revenue last year was $230 million.
Has anyone seen the percentage of LLS funds directed towards pediatric blood cancer research?

Can't argue with success - Susan G Komen
Susan G. Komen for the Cure, formerly known as Susan G. Komen Breast Cancer Foundation, was established in 1982 by Nancy G. Brinker. Nancy G. Brinker promised her dying sister, Susan G. Komen, that she would do everything in her power to end breast cancer forever. Today, Komen for the Cure is the world's largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Komen Race for the Cure, we have invested nearly $1 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world.
Overall, Charity Navigator gives SGK 4 of 4 stars, same as last year. For fundraising efficiency, SGK receives 4 of 4 stars, same as last year. Patrice Tosi, C0O, earns $513,095 or 0.21% of expenses. Program expenses are 83%, admin 10% and fundraising expenses 7%. Total revenue last year was $275 million.

The largest childhood foundation - Cure Search
CureSearch National Childhood Cancer Foundation is dedicated to raising private funds for childhood cancer research for the Children's Oncology Group, the world's largest cooperative cancer research organization. Together, we are committed to conquering childhood cancer through scientific discovery and compassionate care. CureSearch Children's Oncology Group is a network of more than 5,000 physicians, nurses, and scientists whose collaboration, research and care have turned childhood cancer from a virtually incurable disease to one with an overall 78% cure rate.
Overall, Charity Navigator gives CureSearch 4 of 4 stars, same as last year. For fundraising efficiency, CureSearch receives 4 of 4 stars, same as last year. Clarence T. Schmitz, Chairman, earns $0 (that's right). Gregroy H. Reaman, Executive Director, Scientific & Medical Affairs earns $340,000 or 0.62% of expenses. Program expenses are 95%, admin 3% and fundraising expenses 2%. Total revenue last year was $52 million. Efficiency wise, CureSearch knocks the socks off the ACS and LLS, and is even better than the truly exemplary Susan G Koman!
To take that ACS example again, of the $2000 you raise, a full $1900 is directed towards childhood cancer!
Obviously CureSearch is not the only childhood cancer charity. It should be noted that its mission is unique in the CC world, in that it collaborates and coordinates with over 200 Children's Oncology Group (COG) hospitals and their 5,000 members, as well as the National Childhood Cancer Foundation, with an ultimate mission to cure childhood cancer. This link shows some of the major diseases and areas that CureSearch researches, and tells more about COG.

There are so many other worthy causes associated with childhood cancer; local family support organizations, St. Baldricks and Alex's Lemonade Stand to name two TOP ones; Ronald McDonald House (2 stars because its revenue declines year after year), Make-A-Wish (3 star, 74% programs, 10% admin, 16% fundraising), Candlelighters (not ranked), etc. Not to mention the parent-led Foundations, who may contribute to support, hospitals, or other.
OK, there are many organizations competing for your dollar. Other diseases, United Way, March of Dimes, Red Cross, Save the Whales, World Wildlife Foundation, you get the idea. There are over 900,000 registered with the IRS. It must be a pretty competitive business eh? Well, especially in these economic times, you can bet your last dollar that the competitiveness will only increase.
But undoubtedly, these organizations would choose to work together for the betterment of their cause right? Call me cynical. I mean they would not let egos or self interest get involved would they? You decide that for yourself.
Or they wouldn't try to accumulate wealth within the organization would they? Well here's an example, the ACS currently holds $1.4 BILLION in ASSETS (yes its a B)- money they have raised and not distributed to programs! In Fiscal Year 2006 the had an excess (revenue - expenses) of $88 million - about 22 times what they awarded to childhood cancer programs! Sure, I understand holding some back for a down year, but $88 MILLION? CAN YOU IMAGINE IF THAT HAD JUST DOUBLED THE AMOUNT TO CHILDHOOD CANCER LAST YEAR???? Why would they hold it??? Well, the nature of the charity business is that it is a business.
In the end, it's your call. Decide if you want to provide support for research for a cure, support building a new playroom in the hospital, support other families in difficult economic circumstances, and what percentage of your donation you want to go to childhood cancer. I just wanted to show some of the differences, raise a few questions for the community, and to get some stuff off my chest.

Peggy then raised the question to AJ's Dad Bob (cp: ajsspace) about where money goes when we donate to St. Jude... he did some research and here is what he found:

There are several questions on St. Judes. I have reviewed the 2007 Annual Report. Funds donated to St. Judes go towards:
1 - Operating expenses of the hospital - 33%
2 - All research (cancer & non-cancer related) - 32%
3 - Education/training - 10%
4 - Fundraising - 15%
5 - Admin & General - 10%
Revenue for 2007 was $990,652,000, with expenses of $646,310,000. (I suppose that includes the $420k the CEO makes) So, they stashed $336 million, bringing their total Net Assets to a cool $2.1 Billion! Charity Navigator ranks them a 2 of 4 stars for fundraising efficiency.
In 2007, $212 million went to research. A monetary breakdown of the research grants is not available on the St. Judes website. The website does "highlight" some research. The areas are shown below (** = cancer related, -- non-cancer related):
** Antibody therapy promising for pediatric neuroblastoma
-- Evidence links cocaine abuse and Parkinson's disease
-- Synaptic connections need nurturing to retain their structure and keep outsiders at bay
** Ink4c and Ptch1 genes collaborate to suppress medulloblastoma
** New treatment could save vision of children with advanced eye cancer and prevent its recurrence following therapy
** Subtypes of ependymomas arise from rare stem cells in the nervous system
-- Mechanism controlling DNA damage response has potential novel medical applications
** Children and adolescents with advanced cancer can make complex end-of-life care decisions (duh!)
** Suppression of FOXO1a gene might kill resistant ARMS tumors
-- Defective lymphatic vessels identified as a novel cause of adult-onset obesity
-- Drug resistant avian influenza viruses more common in Southeast Asia than North America
** Anti-tumor activity also plays a critical role during eye development in the embryo
-- Genetically modified cells migrate to brain and treat neurodegeneration in St. Jude model
-- Oral liquid hydroxyurea promising for long-term use in babies with sickle cell anemia
** Pattern of gene expression predicts multiple drug resistance, treatment failure in pediatric leukemia
** Both inherited traits and tumor mutations affect response to treatment of leukemia
While I certainly may have misclassified some of there, generally, it looks like about a 50/50 split on cancer related and other research. Additionally, there is no way to know the amount of funding for these specific grants, or if there are other grants not listed on the webpage.
But, the bottom line with St. Judes is you are donating to pay for hospital operating expenses (33%), research (32% with an estimated 1/2 of that going towards childhood cancer), and education, fundraising and general/admin (35%).
So, you give $100, some portion of $32 goes towards childhood cancer research.

Thanks for the info Bob and Peggy! If you made it this far, it's pretty “interesting” data wouldn’t you say?
Please join us in making a difference,

click and join PeopleAgainstChildhoodCancer.



Peggy said...

Hi Kim...
wow, sorry to see those battle scars on your arms- ouch! and sorry to hear about the vomitting- I know the places your mind goes, and just wanted you to know we are thinking of you and praying for peace and good news from the tests. Hang in there and please know that we think you're amazing! Your whole family!!!
p.s. thanks for sharing the FACTS. :) I find them very informative, sad, but informative.

Much Love,
Team Larson

mylese said...

We, too are praying for peace and good news for ALL of you!!! AND we think your family is amazing, too!!

Much love from the Reyes Family