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Supporting Deon Lyons

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The beautiful two men in this photo are our amazing brother, Deon Patrick Lyons, for whom this GOFUNDME site was created, and our beloved and now deceased (but always with us!) Father, Kenneth Lyons, taken at our family's  'Home Town' of Lubec, Maine. In fact, the picture is in the parking lot of Quoddy Headlight, one of the most beautiful spots on earth and the farthest east one can go in the United States.

Deon (and his wife, son, and family) need many things from those of you reading these words. After being born with Retinoblastoma, Deon faced many battles with his health, including the ever-present risk of cancer that continues to date. Currently, Deon is under care at Maine Medical Center in Portland, facing a number of life threatening illnesses: an abdominal hematoma the size of a "nerf basketball" (per the Vascular Surgeon) which is pressing menacingly on his right kidney while also sitting painfully in the right groin area where it caused a  "huge" blood clot spanning from his right groin to his lower right calf.  Surgical intervention is too life threatening.  Conservative treatment only, per the growing list of specialists.  The blood issues can only be treated with blood thinner medication.   On top of this, recent PET scan results have shockingly revealed multiple cancer sites:  lung and colon primarily, and a cancerous mass in the upper thigh/buttocks region. He is currently awaiting a biopsy, which will tell us another important part of his story and treatment as he, and we his family, continue to move forward with faith and determination.  

We have many family, friends, and colleagues sending prayers, strength, love, and faith to Deon. We welcome anyone who wishes to join in these messages, as it is our turn to fight for him!  Due to his current situation, a tremendous financial burden is beginning  to grow for this family.  But, more importantly, Deon needs continued prayers, energy, and positive thoughts sent through what we call the 'Prayer/Energy Grid' that is connected to everything and everyone, beginning and ending with God.  If you can afford a contribution for support to help lessen the financial burden, then please, do so. If you can't, then Please, Please send your prayers, your positive energy.  We believe it will reach him!

We, the Lyons family, are grateful for anything you offer up on behalf of our beloved brother, Deon.  May you be blessed in return for your gift of prayer and/or donation.

Let us take a moment to introduce you to Deon Patrick Lyons,

Deon (pronounced Dee-In) is the 4th of 5 children born to our parents.  His entry into this world was a wonderful event, but before he was even a year old, a discovery was made, and formally diagnosed by a specialist in Portland, Maine, that Deon had a rare disease that he was born with:  Retinoblastoma, which is cancer of the retina.  He had it in both eyes.  The Portland specialist referred him to yet another specialist in New York City, where surgery (at Columbia Presbyterian Hospital) and removal of his left eye occurred, along with multiple Cobalt treatments to try to stop the cancers growth.    Cobalt was an earlier treatment much as radiation is today.  The miracle of this was that he still has one beautiful deep blue right eye that could perfectly see! Oh, Boy were we in for many lessons in resiliency and determination from Deon!

Life moved on for Deon.  He battled pneumonia many times in his earliest years, almost dying many times through his early years.  But he won those battles.  He was fitted with a glass eye (prosthesis) which had to be replaced over the years as he grew and his body changed.  It was not something that any of us thought was unusual, and we certainly, as a bunch of siblings (now numbering 5, with the final addition of our baby brother, Scott), did NOT treat Deon any differently than we treated one another.  We were quite a physically active family.  We played rough and tumble through our childhood, with Deon at our side, keeping up, if not surpassing us, in our sporting events, ‘games, wrestling matches and other antics. 

As Deon grew from elementary to middle school, he shot up like a giant, ending up in high school at 6’4” tall.  You couldn’t miss him in a crowd, but on the other hand, he ‘stood out.’  Why?  Because the cobalt treatments literally ended the growth of bone and other connective tissue in and around the area of both of his eyes, resulting in his eye/temple area remaining at the size of his infant/toddler face, where the cobalt treatments had done their job, but left him with a lifelong visual/facial reminder for him to see…for the world to see, that his face was different.  Not to us; never to us! 

It was during those years that we learned about the cruelty of strangers, or even classmates, at times. And as a family, we united, sometimes becoming defensive, protecting him, sticking up for him, and sometimes becoming quite angry and ‘back at you’ in extreme situations.  It hurt us that people were hurting him with their stares, their words, their behavior.  And so we learned, as children, to have compassion for others who have visible ‘differences’ in their body that others can, and often do, rudely respond to.

A sibling was visiting Deon one summer.  They met in Auburn and went into a McDonalds for a bite to eat. On the way back to her car, someone was giving him ‘the stare.’ His sister spoke up and responded defensively in protection of Deon.  Now mind you, they were both well into their 20s and 30s by then.  And here is the lesson Deon taught her that day when he turned to her and said: “If I don’t let that kind of behavior get to me, why should you let it get to you?  Just ignore it and move on.”  And so, the brother she thought was a victim of the darker side of human nature became the Master, the Teacher, of forgiveness and humility and so, so much more.

Deon was a whole person to us.  He had more than one eye, he had super-human abilities that we could all see more clearly as we grew older.  He was one of the smoothest Candlepin bowlers (next to our sister, Theresa) that we'd ever seen.  He released it with rocket power but it just glided down the alley, smooth as silk, usually hitting its target head-on, resulting in many strikes. 

He was also an amazing baseball pitcher and hitter, playing ball through the years, striking out 17 players in one game!  Now close one eye, right now, and imagine driving, pitching, hitting a ball at bat, playing basketball, riding a bike, playing dodgeball...  Can YOU imagine living life as fully as he was, as he did and continues to do, with just one eye, and then, at age 50, with NO SIGHT whatsoever?  He goes to college and navigates the campus with ease (but it took a lot of practice with his mobility instructor to learn to internally MAP his way around!).  Again, please think about this and just how amazing he, and many others without sight, are.  Amazing, brave, determined!  We were, are and continue to be so impressed and proud of him.  Our family cheered him on, and on.  And we will never stop. 

Deon’s facial differences began to cause him to struggle when he reached early high school years.  Our parents watched, and listened to him, and did some homework. They ended up taking Deon to a specialist at Boston Children’s Hospital, who proposed a new procedure wherein they would take bone (from his hip and rib) and wire and work on building up those areas where the bone had not grown since he was treated for the retinoblastoma at Columbia Presgyterian in NYC in 1960.  Three painful "fold-down" surgeries later (the first one taking over 15 hours and involving a team of surgeons from around the country, and one from France),  Deon’s and our combined wishes for a ‘face that would make me feel more normal” alluded him.  It was not the ‘image’ or form he hoped for.  He suffered through the healing and the living with another transition of acceptance, humility, and resiliency. 

Life again moved on, with Deon marrying a beautiful woman named Lynne.  They soon had their son, Matthew, with the full knowledge that he would have at least a 50% chance of having Retinoblastoma.  He was evaluated right after his birth, diagnosed with Retinoblastoma.    They immediately set forth to Boston’s Children’s Hospital, where baby Matthew was treated for several weeks.  He came home, with both of his beautiful blue eyes, and the ability to see perfectly out of both of them!  Another Victory! 

Deon worked with and for our Father’s tire business in Maine, as a tire salesman.  He had routes that covered Maine from ocean to mountain.  It was not an easy job, because he was often required to ‘build’ his route by doing cold calls on businesses in an effort to establish a customer/service provider relationship.  He has often told us how challenging it was when he walked through the door and introduced himself.  He saw ‘the looks,’ of shock, or curiosity and so forth.  “I realized that if I was going to succeed that I needed to find ways to put people at ease, to be more comfortable with me, and so I used humor, found out their interests, asked about their families, and pretty soon, they didn’t just see that I had a glass eye or some facial differences, they learned to see beyond it, like my family does, and  they learned to see me for who I really am (which is so much more than my face or my eye).”  Wow!  The Master teaches again.  And isn’t it the truth?  If we love someone, we don’t see the imperfections, we see the perfection that God created in each of us... if we know how to ‘see.’

Deon’s career in the tire business ended on one fateful day in 2010 as he was driving down a road toward a customer's store, near Skowhegan, Maine.  His vision suddenly became blurry. He had to pull over. He called his workplace and his wife and told them what was happening. Long story short, little did he/we know that when a child is born with Retinoblastoma, receives treatment and goes on with their life, that they have a much higher risk of developing another cancer or having something occur that could (and did) result in the loss of vision in their eye(s).  Deon was left with much scar tissue in and around his eye(s) from his Cobalt treatments as an infant. But on this fateful day, a series of events occurred in his brain, resulting in multiple strokes around and at the site of his one remaining eye.  These strokes continued, being called TIAs or ‘mini-strokes.’ Over weeks and months they stole Deon’s vision, one painful step at a time.  But did that stop him?  No! Deon quickly got connected with the State of Maine Services for the Blind. He met some amazing people, was assigned a case manager who was also blind, who directed him to The Carroll Center in Newton, Massachusetts, where Deon spent several weeks learning how to think and be in this world as a person without sight.

There are some hair-raising stories Deon tells of how his Mobility instructor, Heather, would take him out and about the city of Newton to learn how to navigate with his ‘White Cane’ and not get himself killed in a crosswalk at a four-way intersection with two lanes of busy traffic headed in both directions!  He shared that the words “fear” and ‘scared shitless’ (apologies and hope we don't offend too many readers) took on new meaning for him during those lessons.  He learned so much more from this amazing Carroll Center experience.  He met some inspiring people who had varying levels of blindness, some from birth, others through accidents or a disease.    He will tell you that it was a life changing experience.  When he came home, after graduating from his program, his wife Lynne and son Matt told him:  Okay, now we know what you can do, so nothing will be done for you that you can do for yourself!  And I believe they have stuck to that all these years, much to his benefit.

Deon was urged to apply for admission to a Kennebec Valley Community College out of Fairfield, Maine, not far from his home.  By then Deon had been taught to use the amazing computer assistive devices for the blind, such as JAWS,  that allowed him to become an even bigger computer geek than he had been before losing his sight! The rate that he learned how to' hear' the computer speed talking what it was reading on the screen, was simply shocking to the rest of us who could barely make out the occasional word!  His other senses became so much more acute and almost 'hyper' active, precise, super-human, even.  We remained in awe at the gifts he was developing, one being his writing, which resulted in the completion and publication, through Amazon, of his book entitled “Sully Street.”  We may be biased, but it is an excellent story that is filled with history, humor, the paranormal, compassion, suspense, and drama.  It is a story that he said “just flew out of me.  I had no outline.  I had no conscious story in my head.  I just sat down and out it came.”  We call that a gift, for sure.

Flash forward to 2014 (15?).  Deon is experiencing some new symptoms in his head.  Pain and discomfort.  Something is wrong.  He gets in to see his local eye doctor.  Imaging studies were ordered and revealed that Deon had a Meningioma.  It was a large, widespread ‘tumor’ growing in the Meninges portion of his brain—that layer that lies just below the skull and covers the entire brain and down into the spinal cord as one of its layers of protection.  He is referred to a wonderful Neurosurgeon at Tufts Medical Center in Boston.  The bottom line is that surgery needs to be performed to remove as much of this mass as possible.  There is a risk, but to not operate isn't ////va an option. Left unchecked, it could grow deeper into the brain and impact serious abilities such as speech, memory, and so forth. Deon had to drop out of college for medical reasons, hoping to return in the new year.

Deon made it through this surgery with flying colors.  They took out all that they could and told us it had not invaded the brain in any negative way.  Victory!  Deon recovered quite well, despite being tired.  By the winter/spring semester, he was back at college, getting straight A’s and loving it, despite having to work twice as hard as ‘sighted’ students in order to download, transfer, reformat, etc., all info from his professors.  He didn’t/doesn't complain, he just did and continued to do what he had to do, and did it well.  He finally learned that he was pretty darn smart, after all (something we always knew, but we guess he needed the GPA of a 4.0 to believe it himself!).

Deon was instructed to connect with an oncology group in Augusta, Maine, through the Alfond Center at Maine General Hospital for imaging to be done every six months for a certain period of time, to make sure things were remaining stable.  In approximately one year, later, the meningioma came back and was now growing in his upper left forehead area down through the left eye socket (where he had a glass eye) and over into the temple area beside it.  It was growing so fast that it was starting to fill the eye socket behind the glass eye, and eventually Deon had to permanently remove the prosthesis.  All of this occurred while Deon engaged in a long round of radiation therapy to stop the growth of the tumor.  The Tufts Neurosurgeon told him that radiation was the only treatment he could receive…that further surgery would not be recommended, and that the best he/we could hope for would be stopping the progression.  We are all happy to say that the radiation did just that.  Continued imagining shows that it remains stagnant—no further growth.  Deon eventually returns to college and keeps moving forward, writing, collaborating with friends in the blind community, engaging in radio work with another friend, doing the occasional interview on the radio, getting poems and short stories published with a friend, being active in a role with the Maine State Services for the Blind community, and more.  He has even been active with a local blind-only bowling team that bowls 1-2 times a month. He consistently reports that although he is not actively bowling, ‘the socialization, joking and simply great time that I have with these friends is priceless!”

On September 10th, 2018, Deon was walking outside of his house without his White Cane, and fell, landing on a blunt object in his abdominal area.  He was walking in an area of his yard that he seldom walks in.  An important piece to his story is that Deon has been on a blood thinner since the start of his mini-strokes that caused his blindness in 2010.  Being on a blood thinner puts you at greater risk for internal bleeding.  Soon after the fall—some days later, Deon developed serious pain in his abdomen, lower back, and upon urination.  This led to an ER visit and admit at a local small regional hospital near his home.  They did imaging and found a large ‘hematoma’ in his lower right abdomen…the size of a grapefruit, they were told.  It ‘congealed’ from all the bleeding that began, most likely, following the fall in his yard.  Surgery was not recommended for fear of causing more abdominal bleeding. He was taken off the blood thinner and sent home with a modest approach to pain management.  He saw a vascular surgeon for a second opinion a few days later, at Maine General, where he  went due to his pain being excruciating and the minor meds he had been prescribed not coming close to giving him any relief.  The Vascular Surgeon again agreed with the previous hospital specialist's decision:  surgery was not recommended for fear of causing more bleeding or developing a clot or other life-threatening situation. There was little info forthcoming about what treatment could happen to get rid of the hematoma.  Answer: will have to let the body 'do its thing and break it down, over time."   And still, he was discharged home with his pain not being managed.  Several days pass, with deep, chronic pain and an inability to even "sit at my computer for more than 15 minutes without making the pain even worse.”  He drops out of college for this fall semester due to medical reasons, which is discouraging to him.  He is so close to finishing up and graduating!

On Monday Deon is noticing some new/unusual sensations and discomfort running down his right leg. He thinks that it may be neuropathy related (which he has been told chat his previous radiation could cause).  He goes to bed with increasing discomfort in the leg. He wakens very early the next morning in pain, only to discover that his right leg is twice it’s normal size, hot and painful to the touch, and a dark reddish color, running from the top of the thigh to the bottom of the calf, with swelling even into his foot.  A call to his PCP (doctor) heads him directly to an emergency room. This time they choose Maine General in Augusta, which was a fateful decision on their part.

The diagnosis was:  a blood clot that runs the entire length of his right leg.  The cause? Perhaps pressure from the ‘huge' hematoma that is laying on the blood vessels/veins that serve that leg, causing the blood clot to form.  Specialists are called in: Vascular,  Internal Medicine, the Hospitalist, and others.  More blood is drawn and imaging is done.  He is admitted. The hospitalist was consulting with a specialist in Vascular Surgery at Maine Medical Center in Portland.  They, in turn, consult with specialists at their sister hospital, Tufts Medical Center, in Boston.  The collective thinking is that to surgically touch either the hematoma or the blood clot would put Deon’s life at great risk.  Verdict:  conservative treatment only. Back on IV blood thinner to try to avert another clot from forming.  And pain management…which, after two days, they were getting close to accomplishing.  But then, because of the gravity of his situation and the razor's edge of balance Deon’s body was working to sustain, all of the specialists felt that Deon would be best served at Maine Medical Center, where they also have an excellent trauma center/team of providers.  And so he was transported down on September 27th, where he has remained ever since.

What was left out of the above timeline is that for the 2 days he was at Maine General, imagining showed a large ‘mass’ in one of his lungs.  They said that they could not do a biopsy because it would be invasive, likely causing a life-threatening bleed, which he could not afford given the instability of the other two primary ‘blood’ related issues.  A PET scan and biopsy would have to wait.

Family has surrounded Deon in person and in thought and prayer from Day One.  The people praying for healing and recovery from his layers of physical disorders at this time is beyond what we can imagine.  And boy, do we believe in the power of prayer and positive thinking /visualization of a complete healing and recovery for Deon.  We hope it will hold him up gently and with strength, as the pain remains chronic, not fully able to be treated for some reason we can’t comprehend.  His suffering is deep and he is weary.  However, he has NOT given up! 

On October 12th, Deon was stable enough for the PET scan which the oncologist said would confirm where any  cancer was present in his body (if any, we were so hoping).  On Saturday, October 13th, Deon was visited by two of his team specialists with the news from the PET scan results.  Unfortunately, he heard this information by himself. Luckily, a family member soon showed up and was able to bear witness to the profound and overwhelming news.  Deon has lung cancer; the large mass in the upper thigh/buttock region is cancerous, and, the unexpected news that he also has colon cancer, which they feel, after conferring together, was the likely original cause of his abdominal bleeding that formed the 'huge' hematoma.  

Deon is moving toward a planned biopsy on 10/16 at the site of the colon cancer, which the doctor stated might be the primary cancer source.  There can be no surgical intervention to remove the cancer...that we are yet aware of...because of the continued high risk for any surgical intervention causing life threatening bleeding or clots.  We trust in the decisions made by his Maine Medical Center team and pray for their wisdom, guidance and treatment planning with Deon's life and health being kept in the forefront at all times.  They feel the colon biopsy holds the lowest level of risk at this time.
As you can glean from this rather wordy summary of Deon’s life, it has not been an easy-breezy path, as some are blessed with.  What we do know is that Deon is our Hero and a Hero to many others.  He is not perfect. He is not always (but most always) the funny, soft, gentle, caring giant bear of a man that we know and love.  But no matter how he presents, past, present or future, he is loved and cherished by his family and far, far beyond.

Deon and his wife are on a fixed income.  They live in a modest old farmhouse that has many areas in need of repair.  They do not live an extravagant lifestyle and struggle to live within their means while trying to keep a vehicle that is safe and gets them where they need to go.  Last winter they kept their thermostat at 55-60 because they couldn’t afford to keep paying for more oil by running it at a more comfortable and healthy temperature. They’re Mainers…they simply put on more layers of clothing to keep warm! They no longer have cable service to their television.  They shop at discount outlet food stores.  His wife, Lyn, can take 3-4 staples and whip up amazing meals and desserts, much to Deon’s pleasure!  Have you ever had one of her Whoopie Pies (the Maine State Pie)???  Amazing!

Add to this the many layers of medical services, tests, transportation costs by Ambulance, medication costs, imagining costs…you get this if you’ve ever had a medical event in your life and only Medicare to help cover some of the expense.  We know there will be an avalanche of bills arriving soon.  One that will overwhelm their daily existence.  And one more thing:  we don’t know what the next steps are in Deon’s diagnostic and treatment areas, in his pain management, in his need for some serious and long-term Physical and Occupational Therapy areas (Rehab), possible Chemotherapy, etc.

Deon (and his wife/son and family) needs many things from those of you reading these words.  Mainly, he needs continued prayers, energy and positive thoughts sent through what we call ‘the Prayer/Energy Grid that is connected to everything and everyone and comes from God’ (or whatever name you choose to give it, if you’re a believer).  Even if you’re not a believer, we hope that you are a person that realizes that thoughts have and are energy.  So if you can’t or don’t do prayer, then send energy.  It will reach him.  Combined together, amazing and wonderful things happen.  Believe it!

If you belong to a church or live in a community or are a member of an organization that you know could receive this GOFUNDME site for Deon, please, please, pass it on, pay it forward. 

Perhaps you may have information that you can gift us with that will help to connect Deon and our family with a new direction to reach out to in ensuring that he can continue to get the best of care. 

Blessings, peace and heartfelt thanks for your kindness, prayers and support. 

The Lyons Family.

Fundraising team: Team Lyons (1)

The Lyons Family
Wilton, ME
Paula Lumb
Team member

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