My son Terry, the family historian, was quizzing the relatives during Thanksgiving. “What do you remember that you liked the best about so ad so? What annoyed you about whats her name?” The one thing that most of us remembered about Kara when asked in this context of fun was her nickname, Superbaby.

Kara was the family baby. Lisa, Anna and I were all babies together. But when Kara arrived, she was the only baby in the house. She just exuded baby. She was a superbaby. She had a supersmile and a superlaugh and was so full of joy. There was a time before each of us got older and got on each other’s nerves as older kids do, that Kara and her infectious enthusiasm was the center of our universe.

That’s one of the ways I want to remember Kara.

I don’t think Kara wanted anything more in this world than her family’s approval and love. She was like all of us in this regard only more so. Her love for each of us, her friends and family, was the closest thing to unconditional love that I have experienced short of God’s love. She was always willing to do anything asked of her. She was always willing to put others before herself. She was always willing. And she had a very strong will.

That’s one of the things I will always remember about her.

Kara was a strong willed child that grew to become a strong willed woman. She wore her confidence like a suit of armor. It protected her from rejection – mostly from rejection from people she loved. But it also kept her insecurities locked inside. Despite outward appearances, Kara was like all of us in this way. She was full of self-doubt and regret. And she had fears. But she chose to put her chin forward and to keep her head up. Even when her days were at their darkest. She made it easy for those of us who loved her to accept her in her suit of confident armor. It gave us hope that everything would be okay.

I’m going to struggle with that memory of Kara for a long time.

Kara’s suit of confident armor was not simply a veneer. It was a valid part of her personality, earned by her through many trials and many triumphs. She dropped out of high school — but went on to get her GED. And then went on to college to further her education more. She fell into drug abuse — but rose above it and survived dangerous times in the process. She carried the burden of her legal problems — but still fought to gain the things that many of us take for granted – a car, an apartment, a job. But these things will never be the measure of a person. Everyone here knows a person is measured by their friends. That it’s the result of the love shared with friends. And Kara’s confidence was fueled by the love she received by each of you here.

I expected to grow old with Kara and I’m going to miss her immensely.

When she was diagnosed with Lupas, she had been in pain for a year. I had no idea. She was not one to complain. I pray all of us complain a little more and I pray that I get better at hearing people’s pain. Kara’s pain was increasing but we all hoped that it was subsiding. If I have any comfort to share, it’s the thought that Kara has been spared what might have been a long, cruel struggle with the end of her life. As it was, she was able to spend her last day in the bosom of her family. It was a day where a lot of love was shared and felt.

I would like to leave this world feeling like that after a day like that.

Kara left us too soon. There isn’t anything I can say that will explain her death in any acceptable way. There isn’t anything I can say that will make sense of this tragedy that we are experiencing. But I know that these struggles that I’m having are not Kara’s struggles. There are no struggles where she is now. And maybe when I have doubt or regret or fear, I will remind myself that Kara is beyond those problems. I can see Kara gloating over beating me to peace. Arriving first. Crossing the finish line and waiting for me on the other side.

The gracious hosts fussed over their company, offered drinks, then settled in next to each other to tell me their story. Gwen began by telling me about her diagnosis – stage 4 non-small cell lung cancer – but then she got to the heart of the story.

“I was given a brochure about a medication that I’d be started on and told that it would be in the neighborhood of $5,000 a month.” She, like so many others, was aghast.

$5,000 Every. Single. Month.

That’s $60,000 a year. More than most people in this country make annually – even before taxes. But even more for a retired couple planning to live out their years together on savings.

So what do people facing this sort of news do?

“I said I think we’d better go to Rockafeller’s, which was our favorite seaside restaurant in that area, and have lunch…and just forget about it for a while. Then,” she said, “we went home and faced it.”

This determination to savor life and family is one of the things I found most endearing about the Martinos.
A retired nurse and retired doctor, the Martinos married over 30 years ago. With three grown children and a handful of grandkids, they retired to a home in Virginia before discovering Gwen had cancer.

Facing a daunting disease and an even more daunting financial burden, Tony Martino decided they’d sell their home to pay for his wife’s medication – a true testament to the fact that people, not things, are what truly matter in life.
Though the proceeds from the sale of their home would help, they knew it wouldn’t be enough to cover the medication

Gwen needed, so the Martinos began looking for other options.

That’s when they found Chronic Disease Fund.

With just a quick phone call and application, Gwen was told that her medication would be covered. Overjoyed, she saw that there was finally a reason to hope in the battle against this disease. So Gwen began her fight.

Over the next few months, she experienced unpleasant side effects. But true to her nature, Gwen resolved to take them all in stride, remaining grateful for the opportunity to fight and determined to conquer the disease that threatened her.
As lunchtime approached, Tony and Gwen worked side by side in the kitchen while they told me about living with the disease. With the financial burden lifted and accompanying worry diminished, they focused solely on fighting the cancer and enjoying every moment they could together.

After a bit more time in Virginia, a new specialist brought them to Boston where they settled into a quiet life near a college campus. Exploring museums – especially the Boston Museum of Fine Arts – became a favorite pastime. And when the walking became too much for Gwen, Tony would find a wheelchair to push his wife through the remaining exhibits so they could enjoy them together.

Today, many patients’ cancers are diagnosed through needle biopsies. These tests often do not provide a sample that would be substantial enough to determine what genes or pathways control a tumor’s growth. Dr. Daniel Haber, Chief of Massachusetts General Hospital’s Cancer Center and one of the test’s inventors, said this test acts like a liquid biopsy that will avoid painful tissue sampling and may give a better, more effective way to monitor patients than periodic imaging scans.

The initial design of this new test uses a microchip (resembling a lab slide) covered with 78,000 tiny posts, similar to bristles on a toothbrush. These posts are coated with antibodies that bind to cancerous cells. When blood is forced across the chip, the healthy cells bounce off of the posts – the cancer cells stick to them. A unique stain makes the cancer cells glow so that researchers can locate, identify, and study them.

According to Bob McCormack, Technology Chief for Veridex, this chip shows the most potential out of dozens that other companies and universities are rushing to develop. And thanks to the agreement between Veridex and Johnson & Johnson’s Ortho Biotech Oncology Unit, the microchip will be tweaked and improved in the near future. This includes trying out different designs for the chip and a cheaper plastic to make it more practical and less costly for mass production.

The new blood test is still undergoing testing, but Dr. Minetta Liu, a breast cancer specialist, said, “The dream is, a woman comes in for her mammogram and gets a tube of blood drawn. Doctors can look for cancer cells, as well as tumors, on the imaging exam.”

So far, studies of this microchip have been published in Nature, The New England Journal of Medicine, and Science Translational Medicine.

And that is precisely what makes this treatment so exciting.

A biologic therapy, the drug is a sort of man-made antibody that blocks a crucial switch on immune cells called CTLA-4 – the one cancers use to turn off the body’s anticancer immune responses. Like most other drugs, Yervoy is not without risks. Of the patients taking Yervoy, nearly 13% had severe or fatal reactions. Because of that, Bristol-Myers has agreed to establish a risk evaluation and mitigation strategy to help doctors avoid and manage potential adverse reactions.

Such an incredible drug gives hope for others struggling with cancer or chronic disease that more life-extending treatments are on the horizon.