The Four Diamonds Fund is named after a story that Christopher Millard wrote shortly before he lost his battle with cancer at the age of 14. In Chris’ story, a knight must find the four diamonds of Courage, Wisdom, Honesty and Strength in order to be released from captivity by an evil sorceress. The four diamonds are symbolic of the traits Chris believed were necessary to overcome cancer.

I wish every children’s hospital had the benefit of a Four Diamonds Fund or something like it. Four Diamonds provided financial and emotional support to my family throughout my childhood cancer treatment and into my adult life. They connected us with other families and other resources and did everything they could to make us feel like we weren’t alone. Four Diamonds picked up the tab for much of the treatments that insurance wouldn’t cover, made sure my family could be together and focus on healing, rather than the stress escalating medical bills. Equally important, Four Diamonds reached out to my brother and my parents to make sure that they had people to talk to. There was a real understanding that a medical condition affects not just the patient, but their caregivers and their loved ones.

I wish that such a fund/foundation existed for me and others in my infertile situation now.

I wish that there were someone whose only job was to talk to infertility patients or couples (or singletons) who suspect they may have fertility issues and are just beginning the scary and seemingly never-ending game of “what’s wrong with me?” I wish there were someone in every clinic who was simply on call to answer questions, not about bills or treatments, but real ones, like “Do you think I should tell my boss?” “Do you know anyone else who is suffering from…..” I wish there were someone there like Trudy, the Four Diamonds Child Life Specialist was there for me.

I know that there are fabulous women out there trying to make this happen. Kami created a infertility support group in her local clinic. And there are blogger friends turning into real life friends and support circles across the nation. How do you go from something that is grassroots to something that is standard in every reputable infertility clinic? I wish I knew.

**

In an outrageous stroke of luck, Michael and I were offered a weekend getaway at a bed and breakfast in a small town just outside of State College, Pa. for a writing assignment for a local paper. We are packing our bags and heading towards THON country right after I send this post. It’s been years since my last THON. As a kid, I used to go every single year, bald or not, and I loved hanging out with the college kids. I loved that me and my friends were the center of attention. I loved that our doctors were there too so our parents never worried too much and let us run absolutely wild through the gymnasium filled with sweaty, sleep-deprived, delirious students.

Now, I will be going with a slightly different perspective.

Post from: Blisstree

‘THON Weekend at Penn State University

Fertile Hope is a national, nonprofit organization dedicated to providing reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility.

Fertile Hope helped me realize that there were options available to me, even though I spent my entire adult life assuming I was infertile and that was that. Had Fertile Hope existed when I was just beginning my cancer treatments twenty years ago, I would have even more fertility options open to me.

Luckily, Fertile Hope exists now. And it has joined forces with Cryogenic Laboratories, Inc., and the Lance Armstrong Foundation to offer a sperm banking kit for cancer patients called Live:On.

If you are (or know of) an adolescent or young adult male who is about to begin chemotherapy, radiation or surgery and is/are concerned about the effects of treatment on fertility, please ask your oncologist about this sperm banking option. They can give you a Live:On kit for free; or you can order one yourself by calling (800) 466-2796 (it’s $65 to order one directly).

Now, banking your sperm for an extended period of time isn’t free. It’s about $280/year. But if you use Live:On, a percentage of the sperm banking and long-term storage fees will go back to Fertile Hope and the Lance Armstrong Foundation. And those funds will be used to help more cancers survivors pursue their dreams of having a family.

If you’d like more information, check www.liveonkit.com or call (800) 466-2796.

Post from: Blisstree

Sperm Banking by Mail for Cancer Patients

If you aren’t among the lucky customers of the other 10%, there are places you can go to apply for financial assistance with your fertility treatments. Several fertility clinics offer shared cycle programs which defray the costs of using donor eggs. If you are planning to use in vitro fertilization (IVF), the International Council on Infertility Information Dissemination, Inc (INCID) offers scholarships to those in financial need.

For women (and men) who are about to undergo cancer treatment and want to look into preserving their eggs or sperm for future attempts at having a family, Fertile Hope may be able to help. For those of us who completed our treatments before cryopreservation was an option, the SAMFund for Young Adult Survivors of Cancer offers grants and scholarships every year to help cover medical and other expenses – including those related to fertility treatments.

Of course, I have an application pending.

Post from: Blisstree

Financial Assistance for Fertility Treatments

While there is a connection, infertility does not have to be a foregone conclusion to breast cancer treatments. Most cancer treatments will affect fertility – either temporarily or permanently. Dosage, frequency and types of chemotherapy and other types of treatments like radiation are factors in future fertility.

[Here is where I probably need a disclaimer of some sort. Contrary to my father’s hopes and dreams, I am NOT a doctor. Fertilitynotes.com is simply a collection of news, personal experience and a little bit of research.] So why don’t I direct you to some facts…

The American Cancer Society states:

Breast cancer is the most common cancer among women in the United States, other than skin cancer. It is the second leading cause of cancer death in women, after lung cancer.

About 178,480 women in the United States will be found to have invasive breast cancer in 2007. About 40,460 women will die from the disease this year. Right now there are about two and a half million breast cancer survivors in the United States.

And FYI, not only women are diagnosed with breast cancer. My best friend’s dad is a proud breast cancer survivor, in remission for over 3 years.

Two and a half million survivors! I can’t decide if that makes me happy or sad. Glad there are so many successful remissions; So very sad so many treatments had to be started in the first place.

Fertile Hope – an amazing resource for cancer survivors – created this booklet entitled, “Breast Cancer and Fertility that I recommend. Breastcancer.org has a nice long list of studies related to this topic that you can also explore.

Of course, I have to take this opportunity to shout out to a local nonprofit with a great name: not only is Leigh a MySpace friend, she is a fellow survivor and founder of Feel Your Boobies, a charity focused on breast cancer awareness. C’mon. You know you want a tank top with their logo!

Post from: Blisstree

October is Breast Cancer Awareness Month

Teresa Woodruff’s statement on www.kaisernetwork.org was music to my ears:

When a woman is diagnosed with cancer, the first priority is to save her life, Teresa Woodruff, chief of the Feinberg School’s new fertility preservation division, said. She added that although most women will survive, the treatments that attack malignant tumors and cells also can destroy the ability to conceive. “The fertility docs are not used to treating sick people; the oncologists are not focused on anything beyond survival … so this is about breaking down those barriers,” Woodruff said, adding, “On the day of diagnosis every cancer patient can be treated as a survivor, advised of her reproductive options from the very beginning.”

About bleeping time. Earlier this year I was surprised and saddened to see that after decades of research and advances in how cancers are treated that “fertility issues” received only a mention (pp. 27-28) in the 2007 Cancer Resource Guide published by www.curetoday.com. I was further convinced that cancer survivors are the unknown demographic in the world of infertility when Peggy Orenstein’s 8-page spread on egg donation that appeared in the New York Times Magazine gave us less than a sentence.

For long-term survivors like me, it is obviously too late to preserve eggs or reconfigure treatments to ensure future fertility. But thanks to a fabulous organization called Fertile Hope it is not too late for individuals undergoing treatment now. Fertile Hope is a national, nonprofit organization dedicated to providing reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility. They even offer financial assistance to individuals interested in preserving their eggs or sperm in the hopes of post-treatment pregnancy. Other organizations, such as the SAMFund are expanding their assistance and missions to address fertility issues in cancer survivors. It is encouraging to see the medical community finally step to the plate.

Post from: Blisstree

The Oncofertility Consortium