Monday, September 7, 2009

Gold ribbons

September is Childhood Cancer Awareness Month. I'm aware, and I'm sure if you read this you are too.

We need more research and solutions. Cancer patients of all ages deserve better than chemotherapy.

My son did five months of chemo that didn't even keep the cancer from growing back. From this chemo he ended up with nerve damage, causing him to be delayed in his gross motor development. At this point I think he has healed as well as he can from that and now it is just a matter of catching up and being out of the hospital to do so. He also risked heart damage from another chemo drug. His heart seems okay, thankfully, but many other kids who receive this drug cannot say the same.

His current regimen includes one drug that increases his risk of leukemia, one drug that can cause bladder bleeding (and was derived from mustard gas), and one that damages the kidney (remember that he only has one and not even a whole one) and can also cause hearing loss which is not much fun for anyone much less the child of musicians.

Kidney damage is no joke. He is on a low sodium and low potassium diet, which means a lot of foods that he might otherwise enjoy are off limits. Like no ketchup. He takes three blood pressure meds and a bicarbonate supplement as a result of the kidney damage.

I packed away clothes and brought out others and realized that my 2-year-old has not grown. Pretty sad. We knew that he'd slow down in his growth for the duration of his treatment, but the realityy really hit when I realized that we didn't need to buy him ANYTHING for Fall. He is likely below average in height, which is another tough pill to swallow when you are two parents who are six feet and above.

I'm not telling you this because I want sympathy, per se. It isn't just that this is what weighs on my mind when other parents just have to think about playdates and kid classes and potty training. I want to share this because I hope that, after reading this and the stories of other families whose children are fighting cancer, you will agree that these kids deserve better.

Please share this with everyone you know, to increase awareness. Please take up this cause for my little guy and the others.


Sarah R said...

There is nothing I want more than more cancer research, particularly childhood cancer.

Hugs to you....

The Reluctant Crunchy Mama said...

Yikes, I knew chemo has many serious effects, but... Wow... Thanks for doing your part to increase awearness. I read a lot about health-related stuff, but didn't know this. I imagine most people do not know much about the way cancer is treated. Can I link to this on my blog?

The Boy is about the same weight and hight as my daughter, but I see what you are saying. He was always heavier than her prior to chemo and I'm about 8 inches shorter than you. Sounds like he is doing well catching up as far as the gross motor stuff. Hopefully that will also be the case regarding weight and hight.

Hugs to you guys. I so wish I could do something really big for kids like him. Since we don't have tons of money for research, I'll keep doing the next best thing: donating platelets, well, if the silly redness on the arms ever goes away, that is!

Jennifer said...

I hate cancer! I hate that children have to go through it! I still can't imagine how hard all this is on your family and yet you guys are making day at a time.

Best wishes to you guys!

FET Accompli said...

I read this from Elana's blog, and send you thoughts and prayers.