Patient Advocates

Patient Advocates 2017-05-22T13:52:24+00:00

At the 2017 Medical Imaging Technology Showcase the Academy featured three keynote speakers who shared their very personal stories about the impact imaging has on their disease diagnosis, treatment and ongoing monitoring.

Mrs. Cindy Parlow Cone

Cindy Parlow Cone (38): – US Women’s National Team player – 2 Olympic gold medals, one silver and a World Champion – suffered several concussions that forced an early retirement from professional soccer. Cindy is also the former head coach for Portland Thorns FC in the National Women’s Soccer League. http://www.cnn.com/2015/11/12/health/cindy-parlow-cone-soccer-concussion/

Mr. Brad Booth

Mr. Brad Booth (33) was raised in Baton Rouge, LA, and now resides in Birmingham, AL, with his wife, Stacey, and their two children, Nola (3) and Grey (2). He was diagnosed with a rare, incurable sarcoma at 26. Brad currently receives treatment at the Cleveland Clinic that includes full abdominal surgery, a tumor cell vaccine, frequent imaging, and an image-guided procedure to freeze tumors in his liver called cryoembolization.

Brad’s Remarks:

My name is Brad Booth.  I was born and raised in Baton Rouge, LA as a good ole Cajun that learned to peel crawfish before I could walk.  I was eating crawfish in a high chair and I’ve made sure to continue the tradition with my kids.  My daughter’s name is Nola, she doesn’t have a choice but to love crawfish! I eventually landed in Birmingham, AL where I met my beautiful wife and now live with our two kids, Nola (3) and Grey (2).

There are obviously many aspects of cancer that I hate, but one comes up fairly often and is at play tonight.  I hate asking for help.  I’m sure many of you here can relate.  I want to be in control and my patience is short when there are issues I can’t fix.  This aspect of my personality was at its height while playing football at the United States Air Force Academy.  I can remember being in the locker room for one of Coach Fisher DeBerry’s fiery, pregame speeches.  Then, we would run out onto the field for the national anthem and the climax of the program, the flyover.  The F-16’s were the best.  Four of them would fly low enough over the stadium to make the ground shake beneath your feet. In that moment, I could clinch my fist, grit my teeth, and run through a brick wall. I live for those moments.  In those moments, there is no need to ask for help.

When I was diagnosed with an incurable cancer, Desmoplastic Small Round Cell Tumor, a lot of control was taken out of my hands.  I couldn’t just clinch my fist, grit my teeth and get through it.  I had to submit to many different forms of treatment.  I had to lose my strength, energy, hair, and sometimes it felt like it went so far as giving up my dignity.  I had to learn how to accept help in the form of financial gifts, yard work, meals.  I have slowly learned how to answer the question, “how can I help?” or “what do you need?”

I have seen, firsthand, that it truly takes a village, or more like a metropolis, to fight these horrible diseases.  It takes all kinds of people with different strengths, talents and connections – family, friends, church members, nurses, doctors, researchers, Members of Congress, and their Congressional staff here tonight.  You are part of my village.  Imaging and biomedical research guides my treatment.  Each month, images determine the path of my treatment.  Think about that for a moment, if we were not able to have these images, I would not be here now.  I would not be able to keep track of my disease and my treatment options would be much more limited without these two important fields.  So while we are making progress, I am not here to make you feel good about that progress, I am here to call your attention to the value and the impact of this technology.  You may be surprised when it matters to you or someone you love.

I had a significant tumor recurrence this past October – 12 tumors showed up in my liver and 3 in my abdomen.  I was told by one major research hospital there were no good treatment options left for me.  I sought out a second opinion at the Cleveland Clinic.   my medical team developed a treatment plan that perfectly exemplifies the importance of this conference.  I had surgery to remove the 3 abdominal tumors and 6 of the 12 liver tumors.  They retained the tissue from the tumors and sent it to a lab to be made into a vaccine unique to my tumor.  I fly to Cleveland to get an injection of the vaccine once a month with the hope that it will trigger my immune system to attack the cancer cells.

They also recommended an image-guided procedure called cryoablation for the remaining tumors in my liver.  My doctor uses 3-D imaging to guide a probe into my side, through my liver, into the tumor and then freezes the tumor with a type of gas.  All while I’m awake!! I am here today with my medical team and I would be honored to meet you, shake your hand, introduce you to my doctor and tell you more about my story and the technology that is making it possible for me to be here today.

As you can see, you are not only a part of my village, but a crucial part. The help with meals, yard work and finances are not going to matter very much if there is not enough funding for imaging and biomedical research. You are not going to strongly support this funding if you do not understand its value. This is why we are here tonight, simply to inform, so you know.  I wouldn’t be here today without the funding already provided, but there still isn’t a cure for my cancer.  I still can’t look my kids in the eyes and tell them, “it’s going to be okay.” So, I’m swallowing my pride and asking for help.  Please continue to fund this important cause.  Thank you.

 

Mr. Brett Johnson

In 2009, Brett Johnson was a healthy 47-year-old enjoying his life as a singer, teacher, and pianist when he began to suffer from nagging headaches.

As a precaution his physician ordered an MRI of his brain. The test revealed a cancerous, Grade III tumor, located in an area of the brain associated with creativity and emotion.

Within three weeks of his diagnosis Johnson’s tumor was removed. After two months of oral chemotherapy and 33 sessions of radiation, his cancer was stable. Johnson’s routine meant having follow-up MRIs for the rest of his life. In 2012, something new appeared on a scan, so they recommended a second surgery.

In the three years between Johnson’s surgeries, advances in imaging had enabled surgeons to remove a higher percentage of cancerous tissue that utilized a combination of procedures with navigation tools and imaging technologies including MRI, CT (computed tomography), PET (positron emission tomography), fluoroscopy, angiography, and ultrasound. http://www.brettrjohnson.com/

Brett’s remarks:

Good evening, everyone.  I will make this quick so that you can get on with this good event.

I am Brett Johnson.  I am a professional singer and teach voice to other professional singers.  And, I have a brain tumor.

My tumor has a fun, long name:  Oligo-dendro-glioma.   Oligo for short.  It took me 6 months to learn to say that!  Oligos are rare, only 2% of all brain tumors.

For me, it all began in 2009 when I started having constant headaches, I was extremely active and healthy and had never had a headache before.  They got so constant that I finally gave in and saw my primary care doctor’s assistant.  She ordered a precautionary MRI — very sure it was just to rule out anything serious.

I’ve gotta tell you, she was not happy to tell me that I had a brain tumor … and that this particular tumor was the worst kind of brain tumor.

I stand here considering myself the luckiest man alive.  We did another MRI, which revealed the tumor was not what was originally diagnosed, but was a slower-growing tumor, an Oligo.  Three weeks after my diagnosis I had my first brain surgery, December 2nd, 2009.

The thing about my tumor is that they can’t ever really “get it all.”  There are always some cancer cells left behind. So while imaging could diagnose my tumor, it could not at the time ensure the majority of the cancerous tissue would be removed.

So I had chemo.  And at the same time did 33 sessions of radiation.  Miraculously, I was able to be back singing professionally within two months, and gradually back to my teaching studio.

I was told that the rest of my life I would be going back for MRIs and blood work every couple of months.  My husband and I resumed life — but with a different perspective.  While I’ve always been grateful, I am now even more focused on my gratitude for every single moment.

As fate would have it, a year later, the scans started to show something that might be tumor growth.  My medical team at Brigham & Women’s in Boston met in their “Tumor Board” and decided it would be best for me to have a 2nd brain surgery.

“Okay.  I’ve done this once.  We know what to expect.  We can handle it.”

This time — thanks to the amazing advancements made — Brigham & Women’s now had just opened this incredible AMIGO Suite.  It is an unbelievable place that puts together all these imaging technologies in one place.  So they don’t have to start brain surgery and then wheel me out to another room to get pictures or do some other kinds of tests … it’s all there.  As far as I know, there’s nothing like it in the world.  I was the first brain surgery done in this amazing place.  Even though it was a 12-hour surgery, I was actually safer than I’d been in the first surgery.  They could get much clearer pictures, so they could more of the tumor out.  My clock was started back to Zero.

That was February of 2012.  My life since then has been an ever-deepening sense of curiosity and gratitude.  I’m training to be a Chaplain, as well as still teaching and singing.

Now I go every four months for MRIs and I will do that the rest of my life.  Imaging was used to diagnose me, and now it is used to maintain and sustain my physical well-being.

Someday my tumor will start growing again, and when that happens I’m trusting both God and these technologies and my amazing doctors that we’ll deal with that then.

What is important to me now, is that I am up here with the ability to illustrate to you that investment in this area of research matters.  Imaging is more than just an Xray, it is the MRI that detected my tumor, the imaging that will track the eventual re-growth of my tumor and the ability to bring CT and PET into one operating room to remove as much of that cancer as is possible now.

My experience articulates huge advances that I personally benefitted from over just a two year period from one surgery to the next.  This technology matters to patients from A-Z and with every condition.

Cindy and Brad and I really only share one thing:  the technology you’re surrounded by here tonight saved our lives, but it has a way to go.  Imagine a patient standing up here at this event in 5 years telling you that 100% of their brain tumor was removed in one surgery and they don’t ever have to worry about dying from a brain tumor.  That should be the goal.

We’ll be here to talk with you more about ourselves if you’d like to hear more.  Thank you … and enjoy your evening.