Fund IVF to Prevent Cancer for Our Kids

The day cancer came back into our lives:

When I was 6 months pregnant with Clara (our now 19 month old daughter), at the urging of my oncologist, I was tested for a TP53 gene mutation that is sometimes linked to the aggressive bone cancer I had as a child (learn more about that here). Given that I have been cancer free since my treatment at age 7, we were shocked in a way that goes beyond what I've been able to put into words to find out that I carried a serious mutation that increases my risk of having multiple forms of cancer throughout my life. The syndrome I have is called Li Fraumeni Syndrome and can be described as:

"An inherited predisposition to a wide range of certain cancers caused by pathogenic TP53 germline variants. Both children and adults are susceptible to developing multiple cancers, most notably soft-tissue and bone sarcomas, breast cancer, brain tumors, adrenocortical carcinoma and leukemia. Other cancers seen in LFS patients include gastrointestinal cancers and cancers of the lung, kidney, thyroid, skin, and prostate among others."

To prevent breast cancer (given the nearly 100% chance of getting it with LFS), I had a preventative mastectomy when Clara was 9 months old, and have started my own screening protocol to catch cancers early, which is aggressive, but not as aggressive as the one recommended for children who are so much more likely to get cancer from this genetic mutation. (See the protocols here.)

Why we've got this GoFundMe:

Clara was tested at 4 weeks old for the mutation and thankfully, does not have it. But, the chance of passing it on to a child is 50%, which means it's the flip of a coin if our future children will have it if conceived naturally. Given this information and the experience we have watching families walk through and into childhood cancer (learn about Childhood Cancer Community, our non-profit organization, here, if we have not met before), we have decided to pursue IVF with embryonic genetic testing to ensure that our future children do not have such a propensity to cancer throughout life, and can live as healthily as a normal child might. We would love nothing more than to give Clara a sibling to walk through life with.

The costs:

Given my disposition to cancer and Ray's narcolepsy diagnosis, we are disqualified from adopting from a number of foreign countries, and without an "infertility" diagnosis, we are disqualified from many grants for IVF funding. Additionally, we are disqualified from IVF "warranty" programs that allow a person to pay a flat rate for multiple rounds of retrieval, so the costs are higher for us than most. Because we need to hold an insurance plan that covers Ray's narcolepsy meds, we also do not have any IVF insurance coverage despite our plan covering the $250,000 annual cost of his medication. I am also at risk for early menopause due to my previous cancer treatment, so doctors have recommended getting pregnant sooner rather than later to ensure we can have another child.

The total cost of one round of IVF for us will be $36,030 plus travel to and from the clinic. The reproductive medicine doctors advise that it's likely to take more than one round to get enough healthy embryos, and as you can imagine, $72,060 is going to be more than we can afford to fund on our own.

As we have shared our story with friends and strangers as we have tried to process this information over the last two years, many have urged us to create a place to allow others to help. As helpers ourselves, it's out of our normal to ask for assistance, but the financial cost of carrying this diagnosis and associated medical costs, and IVF, is outside of what we can handle on our own despite both of us working full time and living within our means as well as we can.

Our why:

We have dreamed of having a big family since we met (those who know us know how much we adore kids!), and living a healthy, normal life. My LFS diagnosis may have taken from us the ability to have a large family, but it does not have to take from us the ability to have a healthy family. For that, we are so thankful. As I walk my own journey with this diagnosis and potential future cancers, I want to know that my family is as taken care of as they can be. And I want them to always have each other.

Thank you for taking the time to consider helping us complete our family and making our dreams come true. If you should feel so inspired, we would appreciate you sharing this story with your networks.

We love you all,

Shanna, Ray, & Clara