h1

Bloody Hell…Stories Like This Remind Me That I am a Slacker Survivor

March 10, 2012

Every survivor consciously or unconciously makes a decision about how involved they want to be in cancer awareness activities once they’re “out of the woods.” I kind of do my own thing quietly, not really engaging in anything official, so stories like this remind me that I should think about being more active. After I quit my full-time job and hire a nanny to care for my three-year-old with spina bifida…

h1

Banking on Parenthood

February 22, 2012

One of the many concerns a cancer patient faces is the possibility of infertility due to chemotherapy treatments. I came across an article today about one man’s quest for fatherhood that was made possible through sprem banking. Modern medicine is amazing…almost anything is possible (except a cure for cancer) through technological advances and innovation. For a price, of course.

What the article does not mention is the high cost of sperm banking and egg harvesting. Costing approximately $9000-$13,000 to perform freezing or harvesting, many cancer patients face a tough choice. Do they invest money in buying a “chance” at parenthood that they may or may not be able to afford, or do they take a chance on fate and hope that chemo does not cause infertility?

I remember being faced with this dilemma myself four years ago. Newly engaged and undecided about having a child together, my then-fiancé and I decided that the cost would be too much of a financial burden for us. We adopted the attitude that if a child was meant to be part of our future together, we would allow nature to take its course on its own.

Little did we know, at the time of that decision, Chemobaby was already conceived. Some things are just meant to be. You can revisit that part of our story, “Ignorance Really is Bliss” here.

h1

Barbie, Bald and Beautiful?

January 17, 2012

Well, it’s about time that Barbie stepped up and offered more than curves and a bouncy pony tail. We’ll see just how influential social media is. Two woman have started a movement on FB to suggest that Mattel create a bald and beautiful Barbie to help children dealing with cancer. A brilliant idea indeed. More on this story here.

h1

Happy 3rd Birthday, Chemobaby!

December 15, 2011

Ho ho ho! I always enjoy revisiting photos from my pregnant with cancer journey. In this one, Chemobaby is still “in the oven,” and this photo is a great reminder of what an exciting time December 2008 was. I was feeling great, ready to take on whatever the future would hold for our family. And to our great fortune, everything turned out superb. Our mighty little supergirl turns three in just two short weeks! Happy Birthday, sweet girl.

h1

Go with the Flow

November 16, 2011

Warning: If you’re offended by pee and poop posts, stop reading now.

If you’re the parent of a child with SB, then these topics are even more a part of your life than you’d ever imagined. Two years ago we got what seemed like devastating news at the time: “You’ll need to start intermittent catheterization 4x a day.” Most, but not all, children with spina bifida have to be  due to compromised bladder function.  It looked so easy when we watched the nurse do it.

But once we got home and had to do it ourselves, it was a whole different story. On a male, the anatomy is much easier to figure out, but with girls, it’s a bit trickier. My husband and I both struggled the first couple of days to find the correct “location,”  and it was very frustrating. And then there was the whole day care thing…would they be willing to accommodate our little one?

Much to our surprise, they were willing to learn so they could accommodate our Chemobaby. They had never dealt with cathing or SB before, but the teachers there were willing to do whatever was necessary to help her to function.

And now, cathing is regular part of life for us. I still do my best to be discreet in public bathrooms and whatnot, but I’m not as self-conscious as I once was. And so far, Chemobaby takes it in stride, too.  In the grand scheme of all conditions related to SB, catheterization seems to be a pretty small price to pay for a fruitful life that does ot include a wheelchair.

h1

The Proof is in the Belgian Pudding

October 15, 2011

A recent study in Belgium that followed the development of children whose mothers received chemotherapy during pregnancy revealed some results worth celebrating:

Pregnant women with cancer do not need to delay their cancer treatment or terminate their pregnancy. The benefits of chemotherapy to the mothers outweigh any potential long-term harm to the children.

I sure hope this study falls into the hands of American oncologists. Would it be dastardly of me to mail an anonymous copy to a certain oncologist (who will remain nameless)? Hmmm…Halloween is almost here, and I’m feeling kind of naughty…

h1

Why the Yellow Ribbon, You Ask?

October 2, 2011

I know it’s breast cancer awareness month, and I, of all people, should be reminding you about the growing need for all women (and men, too) to be aware of the “big C.” Sure, I’m going to go “full on” this month with breast cancer awareness t-shirts and pins, but I figure, so is everyone else.

What everyone else is not going to be talking about is how to prevent spina bifida. So, as a mother of a child with this life-changing birth defect, I figure this is what I should be talking about. So I will.

Please share this with anyone you know that is planning to get pregnant any time soon. Below are some important facts about spina bifida prevention.

Most cases of spina bifida can be prevented. Folic acid is a B vitamin that the body needs to make healthy new cells. If a woman has enough folic acid in her body before and during pregnancy, her baby is less likely to have spina bifida or another defect of the brain or spine. All women who are pregnant or could become pregnant need to take folic acid every day, starting before they get pregnant.

Every woman who could possibly get pregnant should take 400 micrograms (400 µg or 0.4 mg) of folic acid daily in a vitamin or in foods that have been enriched with folic acid.