26 January 2009

Cancer Sucks

I was having an unusually good shift when the phone rang. It was busy, but I was working with the best nurses, and things were flowing well. Everybody I saw had a straightforward diagnosis, and the patients were all nice people.
It was the radiologist on the phone. That should have been my first clue. Radiologists never call to chit-chat, or to give you good news. They never call to tell you someone's test was normal. But I was feeling expansive as I answered the phone, and the voice on the other end was a good friend of mine and one of the best radiologists I have worked with.
"Hey, Shadow," says he, "How's your day going, then?"
"Just wonderful," I responded, "and thank you for asking."
"Well, I wanted to let you know that I'm about to ruin it for you. You know little Katie Jones that you ordered the ultrasound on to rule out appendicitis? The good news is that she doesn't have appendicitis. The bad news is that she has a twelve centimeter mass growing out of her right kidney and adrenal."
"Oh my." I sat down at my desk and began jotting down notes.
"It looks to me that it is more consistent with a Wilm's tumor, but I can't rule out neuroblastoma."
"That's bad."
"Yup."

So I got to have the "your child has cancer" chat with the family -- the nicest people, who just weren't expecting to have that sort of hammer dropped on them. They didn't deserve that sort of news. Frankly, I find that conversation harder than telling people about a death. But what can you do? The whole time, the dad held his head in his hands and kept saying to nobody in particular, "appendicitis would have been OK."

I still think about Nathan Gentry every day. Nathan was the son of two of my closest friends, and he contracted neuroblastoma a few years back. Neuroblastoma sucks. It's an aggressive tumor, and after a terrible struggle, Nathan died about eighteen months ago at the age of seven.

Little Katie Jones probably has a Wilm's tumor. It's not quite as bad as neuroblastoma, with survival rates of about ninety percent. Ninety percent sounds pretty good, right? Great, even! Well, no. If you told me today that my six year old son had a ten percent chance of dying this year, that would be the absolute worst thing I could imagine. Well, I have a good imagination. It would still be terrible, especially in the light of the surgeries, chemo, and radiation that will be necessary to get there.

And I think about Henry. Henry has medulloblastoma, and he has relapsed. He's being treated at my alma mater and one of the greatest pediatric oncology centers in the world, but the challenge for relapsed medulloblastoma is a grave challenge.

My good friend Beth is a pediatric oncologist here at the local mecca, and a shit-hot researcher. She's working on potential therapies for medulloblastoma, and has got some promising leads. But funding is hard to come by, which is appalling but the truth. The cancer dollars mostly go to adult cancers, which are a lot more common and have more visible advocacy groups (no disrespect). Beth was the recipient of a St Baldrick's grant last year, which provided vital support for her to continue her research into treatments for kids like Henry, Nathan, and Katie.

So this year, as I did last year, I will be participating in the St Baldrick's program to raise funds for pediatric cancer research. I will be shaving my head at Fado's Pub in Chicago on March 13, sacrificing my beautiful locks to the cause of finding cures for these terrible diseases. Last year, we did the same, and Nathan's Network raised just about $40,000. You, my readers, were instrumental in helping us achieve that goal.

So, again, I ask you to consider donating whatever sum you can -- simply click on the image below and it will take you to the secure online donation site. The top donor will get first swipe with the razor, should he or she care to come to Chicago! All donors will receive an image of my glistening bald scalp and an extra helping of good karma.


DONATE

9 comments:

AJay Piniewski said...

Thank you for your blog. My son AJ is a childhood cancer victim. Thanks for the work you do. It totally sucks to see the funding and awareness of this problem. But we are trying to do something about it.

Myself and a dear friend, fighting cancer herself, have formed People Against Childhood Cancer. In 4 months, we have over 3000 members, reps from CureSearch, Alex LS, St. B's and 55 other CC orgs. We want to speak as ONE Voice United Against Childhood Cancer.

Please check us out, tell your patients/families...we can use all the help we can get. Thanks.

People Against Childhood Cancer

Matlatzinca said...

AJay:
I'm very sorry for your son's illness.

As Shadow points out here, the main weapon we have in the fight against the various diseases that fall under the rubric of cancer is intensified scientific research. It was with great interest that I perused your website. It was also with great disappointment that I noticed a link on the site to a Baltimore Chronicle article peddling antivaccination anti-science. I urge you and the others in your organization to acquaint yourselves with the scientific medical literature. All of us working on curing children, whether from clear and present killers such as neuroblastoma or medulloblastoma, or forgotten but no less clear killers such as HiB and Measles, give our utmost effort to prevent children from suffering.
A child in Minnesota died last week from HiB meningitis. That child was not immunized due to the parent's unfounded fears over vaccination safety. (link)
Please continue to spread the word, but please, please make an effort to understand the well intentioned science in contrast with the fearmongering common amongst the antivaccine crowd.

Peace, and long life,
M

Vickie said...

Powerful and gripping. Thanks for shaving your head, to raise money, but more importantly thanks for spreading the word that research is the only thing that will help our children and dollars drive research.

Anonymous said...

What is even sadder is having to walk by the pediactric oncology floors or to see a little girl, probably no older than 5, connected to an infusion pump as her father walks her down the aisles of the hospital.

MamaBee said...

Come payday, you've got my donation! I followed Nathan's story after getting the link from a friend, and I've been reading about Henry for a while, too. We've known too many children with cancer -- and it sucks! Cheers to you for your efforts, and I will keep "Katie Jones" and her family in my thoughts.

Suzy Smith said...

I'm shaving my head for the 3rd year in our local St. Baldrick's fundraiser. Unfortunately I have raised very little this year but I am still trying.

It means even more to me since I was diagnosed with renal cell carcinoma in September of last year with subsequent nephrectomy.

shadowfax said...

Suzy,

Wow. Thanks for participating, and keep at it with the fundraising. Every little bit goes into the big pot at the end of the day, and it all counts.

Hope all is well with your own cancer struggle. Cancer sucks. Be strong.

Cheers,

SF

Dragonfly said...

Fantastic post.

Andy (Max's dad) said...

Great post. The Gentry's, Buenger's and Us (the Mikulak's) are all part of the most exclusive, difficult-to-get-into club in the world. You are dead on when you say the sometimes-politically-uncomfortable fact that adult cancers get a disproportionate amount of funding versus the pediatric cancers due to lack of political weight behind the sufferers. By the way, just want to let your readers know about a great neuroblastoma conference May 21 in Vermont. Cutting edge stuff: http://vermontcancer.org/index.php?id=496

BTW, came across your blog after googling the terms "f**k neuroblastoma" Indeed!

Andy, dad to Max (forever seven)
www.MaxsRingOfFire.org