I need your help.

I have officially kicked off my 46 Mommas fundraising campaign. Copy of my first email.


Hi there~

It's been ages since I have talked to many of you. My life was permanently derailed. As you are already aware, just over two years ago, our youngest OffSpring, Gregory, was diagnosed with Childhood Cancer. The trauma it has unleashed on our family is incomprehensible, unless you have personally experienced it.

In June of '09 Gregory underwent a Bone Marrow Transplant at the tender age of nearly four. While comparatively, he is doing quite well,  we still have a very long and uncertain road ahead. We are working through treatment related side effects and he is still taking twelve different medications, on a daily basis.

I have always been an advocate and worked to raise awareness for things that are close to my heart. Nothing could be closer to my heart than funding childhood cancer research.

To cut to the quick, when it comes to childhood cancer it's all about the numbers. With roughly 13,000 cases of childhood cancer diagnosed every year in the US (Childhood Cancer is actually 12 different cancers with unique mutations within each type of cancer), we cannot compete in the world of obtaining adequate research funds. According to the American Cancer Society (ACS) there are 192,000 cases of prostate cancer diagnosed every year. That is ONE type of adult cancer. "The need of the many outweigh the need of the few." Playing the numbers game, it's no surprise that childhood cancer is deeply underfunded.

Yet....... "Curing childhood cancer is the equivalent of curing breast cancer in terms of productive life years saved." ~ Dr. Eugenie Kleinerman - Head, Division of Pediatrics, Children's Cancer Hospital at MD Anderson Cancer Center  Source: People Against Childhood Cancer (PAC2)

Which is where I come in. Myself and other Momcologists & Dadcologist. Grandparents, guardians, siblings, aunts, uncles cousins, friends. People who love our children who are diagnosed with cancer. Funding childhood cancer research is done through grassroots efforts of us. Those of us touched by it. Those of us that are passionate about it.

Have you heard about 46 Mommas Shave For The Brave? We are a group of 46 mothers, from all across the nation,  who have all heard the words, "Your child has cancer.". Why 46? On average, every weekday, 46 families hear those words. We 46 Mommas represent the complete randomness and diversity of childhood cancer. Childhood cancer is not caused by lifestyle or any predictable element. It is truly random. We have partnered with St Baldrick's Foundation, who funds childhood cancer research. In 2010, they funded $14 Million in childhood cancer research. This is done, primarily, through head shaving events.

So. I am shaving my head. With 45 compatriots. All in one place, at one time. Where? When? September 2011. September is National Childhood Cancer Awareness Month. In Washington, DC at Union Station. We have an over all campaign goal of raising $1 Million for St Baldricks. Between last years campaign and our efforts so far this year, we are at nearly $384,000. We still have quite a ways to go. http://www.stbaldricks.org/events/46mommas

How YOU can help fund a cure:

• Donate on my noggin. No donation is too big or too small. Skip lunch out for a week. Order drip instead of espresso. Get the kiddos involved and sacrifice a meal out. Go to www.46mommas.com/mindifinch to make a donation.
• Spread the word. Forward my email, share my blog, share my fundraising page. One person tells two people, who then tell 8 people.........
• Join my team and fund raise! Hold a head shaving event, have a virtual event and shave your head, have a bake sale, garage sale, car wash and donate the proceeds. Ask you favorite latte drive-through to donate a days worth of tips. Here's my team page: http://www.stbaldricks.org/teams/mypage/teamid/69623
• My daughter AnnMarie will be joining me in DC. She and I really need some bonding time and this is perfect. We need to get our hineys to DC. Can you donate airline miles for our travel?
  

I am not doing this for Gregory. None of us are doing this for our kids. In fact, many of our Mommas have already buried their children. Many childhood cancers are incurable. Yep. A death sentence. We are raising awareness, raising funds for research for cures and better treatments for YOUR kids. For OUR grandkids.The kiddos of the 46 Mommas have already been given the best is that is available and it's just not enough.

PLEASE................... help me fund a cure.

"A small group of thoughtful people could change the world. Indeed, it's the only thing that ever has." - Margaret Mead
--
Mindi Finch
Momcologist & Team Leader, 46 Mommas 2011 Campaign
Spokane, WA
Mommy to Curtis, AnnMarie & Gregory
mindithemagnificent@gmail.com

Our family's Odyssey with Gregory's diagnosis of Juvenile Myelomonocytic Leukemia (JMML): www.mindithemagnificent.com

"You are the bows from which your children as living arrows are sent forth."  ~ The Prophet.  Kahlil Gibran
*Won't you help me fund a cure? Do it now. Make a donation to fund Childhood Cancer Research.

Childhood Cancers are the #1 disease killer of children under the age of 15 — more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.

www.46mommas.com/mindifinch

Awareness=>Funding=>Research=>Cures

"Curing childhood cancer is the equivalent of curing breast cancer in terms of productive life years saved." ~ Dr. Eugenie Kleinerman - Head, Division of Pediatrics, Children's Cancer Hospital at MD Anderson Cancer Center

First, YOU are amazing and the strength that you have ever day truly amazes me. When will Gregory completely be out of the woods for relapse? I am addicted to the blog and have you guys in my thoughts so much it makes me feel intrusive at times.

Thank you. *curtsy* Yet, we all have it in us. Yes. You do.
This is a complicated question. I hate to jinx myself, but from everything that I've learned, Gregory's risk of his JMML returning is very small. *crosses fingers*
In the world we live in, Gregory is not cured or in remission. He has No Evidence of Disease. He now has bone marrow from another person. If his marrow were to begin working again, the disease would return. JMML is hardwired into the DNA of his marrow. His bone marrow transplant included hard core chemo that fully destroyed every last drop of his marrow.
In terms of his marrow there are two things that haunt me. Three of the chemos he received cause cancer. Which for Gregory would be called a secondary cancer. Myelodysplastic Syndrome (MDS & AML. The other concern is his new marrow just not working. Should this happen, he would need a new transplant.
While these are scary side effects, they are pretty low on my list of worries. They are big and if they happen, we just deal with it. We had a scare in January of '10, thinking that he was developing a secondary cancer. That experience taught me that worrying about this does me no good.
It's the chronic day-in, day-out stuff that wears me out.

Ask me anything

How did you discover that Gregory had cancer? Were there any signs that you brushed off in the beginning?

This is a common question. I wish there was an answer that pointed directly to "This is what to look for.".
Gregory is the youngest of three OffSpring. Before diagnosis, he had lots of colds and would spike a fever with every illness. Something I gave very little thought to. I just figured since he had two school age siblings, he was just being exposed to more illnesses than the previous two. He also had a run in with Rotovirus when he was 20 months old. Which landed him in the hospital for five days with dehydration.
Looking back, we could have looked at his blood work from then and been more critical. Gregory's leukemia (JMML) does not present like other leukemia's. It's subtle and has a slow burn. His labs from then might have given an indication of what was brewing, but they probably just looked like he was fighting something viral. Which he was. *shrug*
In February of 2009, Gregory had a head cold. Nothing out of the ordinary for him. He had had a juicy cough for about 10 days. At the time I was still working and my mom had him. He had fallen asleep in her lap and suddenly woke up with dry heaves. After our Rotavirus experience, recognizing dehydration was easy. I took him to the pediatrician. Nasal swabs indicated to Strep or Flu. He just look bad. We went to the ER for IV fluids. Typically kids perk up after IV fluids. Gregory did not. The ER doc ordered labs.
His labs indicated either a viral blood infection or leukemia. Like mentioned above, JMML is very hard to recognize.
We were admitted to figure out what was going on. More blood testing, a ton of nasal swabs and everything was coming back negative.
Two days later he had a bone marrow aspirate and this is what led us to the diagnosis of leukemia. Not the kind of leukemia, just a leukemia. JMML took several weeks to figure out.
Probably covered too much, but this is his experience.

Ask me anything

So, where does the money go: Childhood Cancer Research Funding (2010) - People Against Childhood Cancer

What YOU need to know about Childhood Cancer Research Funding. From the fabulous People Against Childhood Cancer (PAC2)
Mindi
~Momcologist

2010 Summary
So, where does the money go: Childhood Cancer Research Funding (2010) - People Against Childhood Cancer

Prior to Fathers Day 2007, I had not given much thought to how funding for cancer research worked. That all changed. I thought we would share some thoughts and observations based on my own experiences and our research. This only seeks to inform, raise questions and to provide a platform for discussion. Nowhere in here will we suggest what charity you should support. But, without the right amount of funds directed towards the right research, PAC2 will only continue to grow, and we really want to shut it down. Let's just look at a few of the groups competing for your money.

Summary

• HOSPITALS: it may be difficult to determine what percentage of a donation to a hospital would be directed towards research into childhood cancer. Donations may cover operating costs, research into other diseases, and/or childhood cancer research.

• AMERICAN CANCER SOCIETY: In 2009 directed $0.007 (less than a penny) to childhood cancer research for every dollar of public support. (Total public support: $897,051,000 and total directed at childhood cancer research: $6,206,000. Source:ACS)

• LEUKEMIA & LYMPHOMA SOCIETY: directed $0.02 to childhood cancer research for every dollar of public support. (Total public support: $287,625,000 and total directed at childhood cancer research: almost $6,000,000. Source LLS)

• NATIONAL CANCER INSTITUTE: it's your tax dollars at work. Over the past five years, it has directed between 3.6 and 4.0% of its total budget, an average of $176 million/year, to pediatric cancer. Why?

• CHILDHOOD CANCER GROUPS: on our list direct at least an average of $0.80 to childhood cancer for every dollar of public support. Please consider CureSearch, St. Baldrick's, Alex's Lemonade Stands, The Rally Foundation for Childhood Cancer Research and others. These guys direct money only to childhood cancer related causes, primarily research. And you’ve seen the PAC2 chevron picture…Awareness --> Funding --> Research --> CURE! - you know why we need $$$)

Hospitals

When a child is treated at a hospital, the hospital incurs costs and produces a bill for the treatment. The bill covers labor, drugs, supplies, new equipment, other operating costs and, if it has a facility, some is directed to research. Obviously not all hospitals have research labs, and the size and funding varies.

Many if not all hospitals have a fundraising arm. If you are at a facility that treats both adults and children, generally funds it collects support operating costs and additions the hospital may desire, and may go towards research. Research may be into 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, with an unknown portion related to childhood cancer research.

With hospitals, it would seem you need to ask if you can direct your donation to the cause you want to support.
Obviously, St. Jude is likely the hospital the majority of the public thinks of if and when they think of childhood cancer. Their marketing campaign is hugely successful. The post "What if...." has the actual data on St. Jude. In summary:

• St. Jude treats less than 4% of all the kids with cancer.
• St. Jude received $682 million in support (donations and bequest) and $82 million in grants from NCI, NIH, and, historically, organizations like CureSearch for Childhood Cancer, St. Baldrick’s Foundation, Alex’s Lemonade Stand Foundation and Rally Foundation for Childhood Cancer Research.
• St. Jude spent $282 million on research on all diseases, 36% of support.
• St. Jude fundraising expenses were $135 million. ALSAC admin and general costs were $51 million.

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 American Cancer Society is one of the oldest and largest voluntary health agencies in the United States. Headquartered in Atlanta, Georgia, the ACS has state divisions and more than 3,400 local offices."

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 numbers, in millions:

Childhood Cancer Research - $6.2

Other Research - $143

Prevention - $177

Detection/Treatment - $129

Patient Support - $275

Management - $63

Fundraising - $222

Looks black and white to us. The numbers speak for themselves with regard to the funding for childhood cancer, but just to be clear, 0.6% of funds are directed towards research to cure the entire suite of childhood cancers.

Imagine you participate in a Relay-For-Life. You raise $1,000. $270 (27%) goes to admin and fundraising costs. Only $150 goes to any research, and only $6 of that $1000 you raised is targeted towards childhood cancer.

The Stats
Overall, Charity Navigator gives ACS 3 of 4 stars but only 1 of 4 stars for efficiency. John Seffrin, Chief Executive Officer earns $685,884 or 0.06% of expenses. Program expenses (what it spends on the programs and services it exists to deliver) are 72%, management 6% and fundraising expenses 22%. Total revenue in 2009 was $897,051,000.

Questions

#1 -Are there ways to "direct" the money raised toward your cause? The ACS site provides the following options for "Donation Designation"; cancer research, breast cancer research, prostate cancer research, colorectal cancer research and lung cancer research. But is there a manner to direct your funds towards childhood cancer if your amount raised is significant?

#2 - Why, when less than 1% of the funds are directed at childhood cancer, do we see so many childhood cancer victims in the ACS literature?

(We know we'll 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 childhood cancer research!)

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."

We're sure 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 (Year End 2009 data). The LLS has stated that almost $6 million of its $288 million in total public support is directed to childhood cancer. That equals $0.02 for every dollar of public support. The numbers, in millions:

Research - $69
Patient & Community Services - $92
Public Health Education - $43
Professional Education - $9
Management & General - $24
Fundraising - $45
Childhood Cancer - $6

So, you raise $1000 for LLS: $240 goes to LLS fundraising, general and management costs. $21 is directed to childhood cancer.

The Stats
Overall, Charity Navigator gives LLS 3 of 4 stars, and for fundraising efficiency, 2 of 4 stars. John Walter, the President, CEO earns $482,000 or 0.18% of expenses. Program expenses are 75%, admin 8% and fundraising expenses 18%. Total revenue last year was $277million.

Questions
#1 - Are there ways to "direct" the money raised toward your cause? I believe that national Light the Night teams raising over $100k may direct the funding? Anyone with experience?
#2 - As it is not readily apparent, has anyone seen the percentage of funds directed towards pediatric blood cancer research?

UPDATE - JULY 2009 - Here is a link to some information directly from LLS. Judge for yourself.

UPDATE - APRIL 2010 - We're a little disturbed by LLS's latest idea for fundraiser events. They've embarked on a Totally Baldacious campaign, where participants shave their heads. I know I've heard that one before....oh that's right, St Baldricks has been doing that for many years solely in support of CHILDHOOD cancer research! Shame on you LLS...

UPDATE - AUGUST 2010 - from the LLS:

"LLS recently launched a research initiative focused on the long-term and late effects of today's curative therapies - many of these quality-of-life limiting consequences impact pediatric patients differentially as children can live for decades after they are cured. LLS just committed more than $2 million to new projects in this research area, thanks to generous donors, and anticipate investing more than $5 million over the next 3 years, in order to make today's cures safer.

We are also involved in the Alliance for Childhood Cancer - http://www.allianceforchildhoodcancer.org/acc/Main and the Pediatric Cancer Survivorship Legislation - http://www.capitolconnect.com/lls/contentpage.aspx?page=pediatricsurvivorship"

National Cancer Institute
The National Cancer Institute (NCI) is part of the National Institutes of Health (NIH), which is one of 11 agencies that compose the Department of Health and Human Services (HHS). The NCI, established under the National Cancer Institute Act of 1937, is the Federal Government's principal agency for cancer research and training.

Here is the NCI total funding and the amount directed to childhood cancer over the past five years averages $176 million/year, and ranges between 3.6 and 4%. Over that same period, average NCI breast cancer funding was 24%, prostate 5% and lung 5%. During 2009 NCI did direct an additional $49 million in ARRA funds to support TARGET Research.

A portion of that NCI funding goes to the Children's Oncology Group, through CureSearch - to the tune of $46 million for fiscal year ending Feb 2009. CureSearch then takes that funding and distributes it back to COG hospitals (more below).

Why is Federal funding for breast cancer five times the dollars per person life year lost when compared to childhood cancer funding? Why is Federal funding for prostate cancer, with a 99% five-year survival rate, nearly five times the total amount given to all types of childhood cancer? Why?

We challenge the entire paradigm of the NCI funding for cancer research. Have you ever known scientists who could manage? Think of cancer as a sinking ship, with all of us on-board. Who do we care for first? We get the women and children to safety. And we know many grieving Mom’s who would give up their seat to any child. But what we have is first class seating, funding, for adults.
And finally, consider this from our friends at KIDS V CANCER: "DID YOU KNOW? Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers. However, the NCI spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers.".

Susan G Komen

Just for comparison....Susan G. Komen for the Cure, formerly known as Susan G. Komen Breast Cancer Foundation, was established in 1982 by Nancy G. Brinker. Nancy promised her dying sister Susan 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, they 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. Hala G. Moddelmog, COO, earns $532,000 or 0.18% of expenses. Program expenses are 83%, admin 11% and fundraising expenses 7%. Total revenue last year was $299 million. Course...that's before they started suing....

Childhood Cancer Research Focused Fundraising

The largest federally funded (mostly) organization is CureSearch. The 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. CureSearch Children's Oncology Group is a network of 230 hospitals nationwide and 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.

CureSearch/NCCF is the grantee for the Children’s Oncology Group from the National Cancer Institute. They receive funds from NCI and distribute them to more than 230 Children’s Oncology Group member institutions in North America and around the world in support of clinical trials. In addition, they raise private philanthropic and non-governmental funds, which they also use to support the Children’s Oncology Group.

For fiscal year ending Feb 2009, Charity Navigator gives CureSearch 4 of 4 stars. For efficiency, CureSearch receives 3 of 4 stars. Joseph Woelkers, Chairman, earns $287,00, or 0.49% of expenses. Gregroy H. Reaman, Executive Director, Scientific & Medical Affairs earns $391,000 or 0.67% of expenses. Program expenses are 95%, admin 3% and fundraising expenses 2%. Total revenue was $56 million. Revenue included $46.5 million from NCI and $13.3 million in donations, private grants and corporate grants.

Here is a map of COG hospitals, and a list of COG hospitals.

Obviously CureSearch is not the only childhood cancer charity. PAC2 has assembled a list of wonderful childhood cancer fundraising organizations here. Please consider CureSearch, St. Baldrick's, Alex's Lemonade Stands, The Rally Foundation for Childhood Cancer Research and all the wonderful other organizations fighting for our kids. Here's some great groups you can contact right here at PAC2. These guys direct money only to childhood cancer related causes, primarily research. And you’ve seen the PAC2 chevron picture…Awareness --> Funding --> Research --> CURE! you know why funding and research is needed!

Speaking from the heart, over the past 2-3 years, PAC2 has come to know, respect and believe in the great people in these organizations. We believe that they will find a cure. And we know they will work with you in virtually any capacity and are ALWAYS looking for leaders and volunteers. They will work with you directly to meet your needs. The best part is that the VAST majority (typically 80 - 90%) of any money you raise for them is directed towards cutting-edge research into childhood cancer. Period.

If we expand into other childhood cancer charities, there are so many other worthy causes that may not be research oriented but still need support; local family support organizations, the Ronald McDonald House, SuperSibs, American Childhood Cancer Organization, Make-A-Wish etc, etc. Not to mention the parent led Foundations, who may contribute to support, hospitals, or other. All needing your dollar.

Other diseases, local police, the 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?

The nature of the business is that it is a business. And we as consumers should know where our donations are going. And expect accountability. Transparency. Just like this note is attempting to be. If we're wrong somewhere....please let us know.

In the end, it's your call. Decide if you want $4 (ACS) or $21 (LLS) or, typically $800 (CC orgs on our list) of the $1000 you raise to go to childhood cancer research.

Research is the key to a cure.

Big Disclaimer – our thoughts, experiences and analysis of their financial data. We just wanted to inform and show the differences, raise a few questions for the community, and to say things that we think need to be said. We are NOT saying ACS or LLS is not right, they just aren’t focused on childhood cancer.

We are.

I have blog bling!

Buy your tickets here: http://listentoyourmotherspokane.eventbrite.com/

Cannot wait!!!

A Blood Letting

I've been sitting here, shaking hands, heart pounding in my chest, gut tied up in knots, trying to decide if I should really write what I'm about to write. Which, on a normal day, I would take as a sign NOT to write about it, write something trite and carry on. Not today.

I'm depressed. Angry, anxious, afraid, stuck and sad. I  cannot find the light at the end of the tunnel. This life I am living seems so extraordinarily out of my control. I cannot focus on anything for too terribly long. I have zero patience and snap at the kids, constantly. We are still living in a partially finished home. When I say partially finished, I'm using the term lightly. I've been hesitant to write about this particular aspect because it involves Daddy. He's working his butt off trying to keep us financially afloat. He is also working hard at keeping his own mental state on an even keel. I do not place blame for the state of our home on him. Yet I am terribly angry about our living conditions. The fact that he and I do not have a bedroom of our own drives me crazy. A place where we can escape and have a wee bit of alone time. Which only exacerbates my mental state. It's easy for someone on the outside to say, "Well, just MAKE him do it." Uh, hello? Do you live my life? Would YOU do that to your partner under the same circumstances? The tiny details of a life lived with someone else are what drives the decisions. I cannot MAKE anyone do anything. Nor can I "let" anyone else do the work. It's just too complicated, right now. We are financially strapped. I'm constantly worried about the next expense and how we are going to cover it. I cannot get a job. With Daddy's schedule and the schedule of The OffSpring, it just will not work. Add my dream of going back to school? Impossible.

We live our lives between trips to school, doctor appointments and counseling for C & A. Everything else either costs money, puts Gregory at risk of being exposed to some illness or is just too much for me to handle navigating the extreme differences between my kids. Something outside of these walls that all three of them can participate in, is free and they all enjoy (oh, and has a small risk of infection) is pretty hard to find. So, we hunker down and vegetate at home. In a home that makes me sad, angry, anxious and depressed. See a pattern?

One could say that I should just stuff it all and carry on. Plaster on a happy face and just fake it. What's the saying? "Fake it, 'til you make it"? NOT my M.O. Besides, all my overhead compartments are already stuffed to the gills with things I had to "carry on" over. I'm still stuffing stuff into the tiny nooks and crannies. Worries over C's school performance, the adjustment to leaving his elementary school in June. I have a whole list of concerns for C. A and her security, her health, her friendships. Her ability to navigate disappointments. All of these things can be helped if I spend just a little bit of time with them. Real time. One-on-one. Yet, I cannot pull myself out of this long enough to focus on their needs. I am so mired in "stuff" that I am stuck and feel like I'm in quick sand. If I don't move, I won't sink any further. I won't get out, either.

I should be over. The Moon. Elated. That Gregory is where he is at. At least social expectations tell me that. Comparatively I should be overjoyed at his progress. I. Can't. Get. There. From. Here. I keep hoping that my worries and fears for his "tomorrow" will abate. I feel like I am in a holding pattern, just waiting for the next thing to pop up. He is not an adult, who has already developed and grown. With every step of his life comes the question of "How is his body going to handle this?" There is no rule book or enough case studies to even give me a glimpse of what is to come for him. Not just in a year or ten years, but tomorrow. Later today.

Childhood Cancer is one nasty bitch.

Yes, I could up my "better living through chemistry". Yes, I could seek therapy. Yes, I could just do "it". The "it" just seems so overwhelming and I can't find the energy resources. No, there is nothing I can drop to fix it, either. I'm living pretty scantily these days.

My work with 46 Mommas and St Baldrick's keeps me going. It also adds to the chaos. It's work and work is GOOD for me. Yet, finding a way for me to handle it as work and not just a little thing on the side is challenging. I think the answer would be to get up earlier then The OffSpring and actually pretend I have a work schedule. This is something I cannot and won't give up. Raising awareness and funds for childhood cancer research is now part of my being. Weaved into my soul.

The experiences of the last two-plus years have changed our lives and family in a way that cannot be explained. We are doing our best, muddling through and making it up along the way. This thing called Living Life is hard enough as it is. We have layer, upon layer of complications. Things beyond our control. I often wonder if I will ever be able to consistently find those Happy Go Lucky moments. Those moments when I can unabashedly throw my head back in laughter and truly enjoy life. I feel guilty as hell for feeling this way, too. Gregory is a survivor. Comparatively he is doing awesome. The fear and anxiety are real, though. The damage to the sibs is real. The fall out on my personal relationships is real. I feel like I have so much responsibility and absolutely no control over any kind of outcomes.

If you are still with me and reading, I applaud you. This is an ugly side of Childhood Cancer. I'm hoping to have released some demons. I appreciate you allowing me to spread the burden a bit. My heart and my head are heavy. Working through this, moment to moment. Day by day. Does it get better? I don't believe it does. I think we just get used to having it as a guest in our lives. We learn to live around it, tolerate it. I'm still quite a Noob in this world of Childhood Cancer. Maybe tomorrow, or this afternoon, will be better. If not better, at least different than this moment.

With a heart that is broken,
Mindi
~Momcologist

***Won't you help me fund a cure for Childhood Cancer? Do it now. Make a donation on my soon-to-be-bald noggin  for Childhood Cancer Research.

Childhood Cancers are the #1 disease killer of children under the age of 15 — more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.

www.46mommas.com/mindifinch

Awareness=>Funding=>Research=>Cures

Listen To Your Mother Spokane

I cannot put into words what I just experienced.

Twelve women, all mothers, mostly strangers. Except in this town, there is only degree of separation between all of us.

We are all writers. We are all reading for Spokane's production of Listen To Your Mother. We are all baring our souls for a crowd of paying listeners. On Mother's Day.

The caliber of these women is amazing. The coordinator's are immaculate. Every detail has been considered and addressed. Consideration has been given to how this will make US react. How to make this an affirming experience for us, as writers. How we can create a safe place, between the twelve of us. How best for the audience to experience our words. To ensure they get the most out of this production.

Tonight was our first rehearsal. Tonight was the first time we all met. Tonight we all read our pieces. These stories are our collective stories. Yours, mine, theirs, ours. This thing we call Living Life. While experiences and details are unique, the emotions are transcendent.

If you are local and would like to witness, experience and FEEL these women's words, join us on Sunday, May 8 at the Lair Auditorium at Spokane Community College. Tickets can be purchased online here: http://listentoyourmotherspokane.eventbrite.com/

You will not be disappointed.

As always with love,
Mindi
Momcologist

***Won't you help me fund a cure for Childhood Cancer? Do it now. Make a donation on my soon-to-be-bald noggin  for Childhood Cancer Research.

Childhood Cancers are the #1 disease killer of children under the age of 15 — more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.

www.46mommas.com/mindifinch

Awareness=>Funding=>Research=>Cures