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#EyeGetDilated Month – Karen Merritt’s Story

For our #EyeGetDilated Month, we share Karen’s journey as a caregiver for her daughter Devyn, who was diagnosed with ocular melanoma in 2013:

Karen Merritt

My name is Karen Merritt and I was a caregiver for my daughter, Devyn.

In 2013, Devyn was diagnosed with ocular melanoma.  It was a horrific time in our lives.  Devyn was 23 years old and we had never heard of eye cancer.  Within 14 days, she was having an enucleation at Wills Eye Hospital in Philadelphia.  Upon diagnosis, I did what just about everyone who is computer literate does; I Googled.  What I found sent me spiraling into depression and despair.  It was a very lonely time.  We knew no one with this diagnosis and there was no one to talk to about it.  Within a couple months of her diagnosis, my brother found the Ocu-Mel listserv.  This listserv (basically emails sent to me on a daily basis) had people that were subject matter experts on OM and gave me a glimmer of hope that my daughter would not be dead within a year.  They were the inspiration for my journey as a layperson researcher into ocular melanoma treatments. In January of 2014 Devyn started an adjuvant treatment of Sutent for 6 months.  The goal was to prevent mets.  She unfortunately metastasized almost exactly 3 years later in October of 2014 and we spent the next 5 years traveling regularly to Jefferson Hospital in Philadelphia as a patient of Dr. Sato.

I find it very difficult to talk about my feelings during those times.  I tend to suppress my anxiety so that my daughters, my husband (Devyn’s Dad) and my family didn’t feed off my feelings.  I was the researcher and they trusted me to help Devyn make decisions regarding her treatment.  I routinely grilled both Dr. Sato, Dr. Orloff and Dr. Eshelman (the Interventional radiologist) about various treatments, supplements and alternatives I would read about.  I sent articles to them if they were from respected publications.  Over time, my resource for information moved from the listserv to Facebook groups.  All this to try to desperately beat the odds that Devyn was facing.

I traveled with Devyn to Philadelphia most of the time which was a 5.5 hr drive one way.  My husband or Devyn’s husband would occasionally take her if I knew that the treatment was routine and I wouldn’t miss any pertinent information from Dr. Sato.  There was a period of 2 yrs where the trips were weekly for infusions so she and I spent much time together traveling.  As a caregiver, it is sometimes a struggle to know whether to broach the subject of her disease.  There were a few trips where Devyn was about as nasty as a child could be.  My own mother, in her eighties, kept reminding me that Devyn could strike out at me because I was safe.  She knew that I would love her no matter what.  We did have some very serious conversations during those times but Devyn tried to shield us from her own fears too so we didn’t discuss OM much.  Other times, we talked about her equine pursuits, her friends or we would put her music on and she would be dancing in her seat while we sang with the lyrics.  I loved to see her happy for those moments.

I was available for her around the clock if she needed it.  She called me several times at 11pm to say she needed to go to the ER due to pain that she couldn’t get under control with the meds she had.  My sister and I went over to her house almost daily to care for her horses and saddle one if she was up to riding.  She also had a cat and a dog that we helped care for.  There was a snake and we monitored it for water but feeding it was left to her and her husband – I don’t do snakes!

This, unfortunately, was not my first go around with cancer.  My dad died in 2011 from non-Hodgkins Lymphoma.  My dad was very much a realist and I believe I inherited that from him.  While we all hoped that Dev would be the miracle poster child for an OM cure, I knew in my heart that she was not trending in that direction.  Scans were every 3 months and each scan showed that while growth was at times minimal, it was still there.  When my father was told there was nothing more they could do for him, I adopted a mantra that I would have no regrets.  I did the same throughout Devyn’s struggle with this disease.  I made sure that I was there if she needed me, researched constantly and looked at alternatives such as supportive supplements and other non-conventional drugs that kill cancer cells.

I was not alone in supporting her. My family including my husband, my mom, aunt and sister were super supportive both in helping Devyn with transportation if I had conflicting appointments, assisting financially and in helping with her animals.  My out of town brother and sister helped if I needed a little extra research done.

My advice for caregivers is to be there for the one you love.  This can mean many things but the most important is to listen – don’t offer advice unless it’s asked for and try not to take over if the patient doesn’t want you to.  Decisions need to be theirs even though that can be so very difficult for a caregiver.  Don’t neglect your other loved ones.  This includes yourself.  Take a break from social media occasionally.  Social media is a great resource but it can also be a huge source of stress and depression and sucks up a lot of time!  Being a caregiver is a difficult role to fill but it also can be the most loving role one will ever play.

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