Monday, March 24, 2014

It is a great time to be a mutant (if you have to be a mutant)

I was driving Brent in to the hospital on Thursday afternoon.  It was the last day of school before Spring Break and Brent was going to get his drain out, which was most welcomed.  After telling me all about his day, Brent asked about mine.

"What did you do today, mom?"

Well, among other things, I had watched a webinar about metastatic melanoma.  There is a researcher out of MSKCC that has grabbed my attention in the round about way that my life works.  When a webinar featuring Dr. Jedd Wolchok was posted on my news feed, I registered.

I suspect that stay-at-home moms were not the target audience, given how science-y it all was, but I found this thing to be absolutely riveting. There are promising things in immunotherapy, specifically with regard to melanoma, but these ideas can be applied to other forms of cancer as well.  I am very encouraged.

In sharing some of the things that I learned with Brent, I spoke to him about how much has changed, even since I first learned about Li-Fraumeni Syndrome, just ten years ago when Lauren was diagnosed with adrenal cancer.

Ten years ago, they were just starting to test families who they suspected had Li-Fraumeni, for a p53 mutation, in order to identify which family members were effected.  Prior to that, parents could only wonder and worry that they had passed this cancer predisposition to their children.  I would still be worrying about Alex and Olivia, had the genetic testing not proven them to be genetically sound at P53.  They have the same cancer defense as everyone else.  This scientific advancement has directly benefitted our family, eliminating half of our worry.

But even five years ago, if you did the testing, there was nothing to be done with the information for people with a positive result for the mutation.  Brent was diagnosed with osteosarcoma in the fall of 2011, right after the Toronto screening protocol was picked up.  By using this screening guide, we began the proactive hunt for cancer, finding Lauren's brain tumor early, before it caused her bigger problems.

This same protocol picked up Brent's current cancer, melanoma, long before we would have suspected that he had a problem.  While I am not happy about the fact that we are on our fourth pediatric cancer, or the fact that Brent has a year long treatment, I must to concede that the screening protocol is in fact working.  We are picking these cancers up in the earlier and more treatable stages.

I shared with Brent about a study that they are doing at the National Institute of Health, which is trying to determine if using an existing drug, used off label, will help prevent cancers from developing in the first place.  I am going to meet with the researcher next week to talk about this.

The research keeps moving.  At first they simply identified families with likely genetic predisposition.  Then they identified the gene that was mutated in all affected family members.  They are now trying to get ahead of the cancer, by screening for it.  The current research seeks to prevent cancer from happening to begin with.

Brent asked if this progression was like the diseases that were deadly 80 years ago, but we have vaccinations for now. If you were to get diphtheria back then, you might die.  But now, people do not get often get diphtheria, because of vaccines.  And if you do get it, it is much more treatable with antibiotics.  I am hopeful about this notion, and hopeful that we are on the very edge of similar advances in cancer.

I told Brent that when he was first diagnosed with osteosarcoma, I was overwhelmed and afraid.

"I was afraid too, mom."  This is the first time he has said such a thing to me. "But it is a great time to be a mutant... if you have to be a mutant."

I like his optimism, especially at times when mine falters.  We move forward...always forward.


Saturday, March 8, 2014

Opera to polka

I am sitting here listening to Olivia singing to Dan, the pair of them making up songs. What Dan lacks in musical ability, he makes up for with enthusiasm and humor. Today, I am living in the midst of a comedic opera or Broadway musical, written by two children.  Dan may be 46 1/2 (as the current song lyrics proclaim) but he certainly has a young heart.  They both just make me laugh.

We are singing in our house this morning, because the pathology on Brent's lymph nodes came back clean yesterday.   He will do a year of chemo, but we do not have to figure out a solution for the radiation recommendation that further node involvement would have brought.  So, we celebrate, joyfully.

It has been a long, and rough couple of weeks. 

Last weekend, the day after Brent was discharged, we helped celebrate the life of Dan's grandfather, who had died. I was anxious when we last visited him in hospice. I worried about how the kids would deal with this loss.  The added layer of uncertainty with Brent's most recent diagnosis made this even more complicated.  In my own mind, at least.

The short of it is this:  Alex and Lauren got up to read at the service.  Brent, despite having a four hour surgery on Friday, participated with Olivia and his cousin Evan, bringing up the gifts in church.  There was sunshine the day we buried him, even if it was bitterly cold.  I have thought a lot about 'Pa.' naturally.

One of the many things that really spoke to me about his life was this:  When he was born in 1923, he weighed only two pounds and 11 ounces.  They put him in a shoebox and told his mother to take him home and enjoy him as long as she could, which was not supposed to be long.  They kept hot water bottles with him, and he went on to live... to marry, to see his children and grandchildren marry.  He even saw some of his great-grandchildren enter high school. 

I would love to see the Vegas odds on a baby, born at less than 3 pounds, living to the age of 90, even with today's technology. I wish I could have placed a small wager on 'Pa.' 

And while Pa's mother certainly must have worried in the cold of that November, and surely she had moments of despair, she eventually saw him grow up, marry, laugh, and famously play the accordion.  This is a favorite polka, from a man who took enormous delight in the company of others:

In Heaven there is no beer
That's why we drink it here (Right Here!)
When we're gone from here,
all our friends will be drinking all our beer!

I smile, remembering my children's proud Croatian great-grandfather.  I think about his mother, who I never knew, and appreciate that without her struggle, I would be absent my most treasured blessings in the form of my husband and children. We never know how far the ripples of our actions travel. 

I am very grateful for the struggles of a woman that I never met.

And tonight, I will toast her son's memory with a polka and a beer.