Fantastic Friday-Emma’s Story

I have been so excited to share about this precious girl.  Emma is a ROCKSTAR!  She’s beautiful and has such tenacity.  Her Mother, Katie, was so kind to share Emma’s story and some amazing pictures for all of us.  This precious girl is the reason the RRP Foundation raised over $5000 in record speed this early fall.  For a rare disease, that’s an amazing feat and Emma is the reason!  She started the campaign! Here’s Emma’s story, as told by her beautiful and brave Mom, Katie.

This is it. It started the campaign.

This is it. It started the campaign.

My beautiful daughter Emma was diagnosed with RRP at the age of 5½. She very suddenly became hoarse and we could not get her voice cleared up. Her family doctor kept insisting that I just needed to give the steroid he had prescribed more time to work, but after 3 weeks and her voice only getting worse, I knew in my heart something was not right. I started to research hoarseness in children online. I found that one of the most common causes of persistent hoarseness in children is RRP. I knew right away that that was exactly what my daughter had. I had just been diagnosed with cervical HPV causing cervical dysplasia about 1½ years after Emma’s birth, so I knew my suspicions were most likely correct.

This Mom....so strong.

This Mom….so strong.

I took it upon myself to set up an appointment with a pediatric ENT for my daughter. I told him of my own HPV history and told him that I was positive my daughter had RRP. He passed a scope down her nose that same day and confirmed that Emma had something growing on her vocal cords. He said that she would have to have surgery so that he could get a better look and biopsy the area. My heart sank because I already knew.

It was confirmed that Emma had RRP on October 20th, 2011. This is easily the worst day of my life. The doctor proceeded to confirm the diagnosis in a public waiting room where I completely fell to my knees and could not be consoled. I was led out of the waiting room by my Mom and Husband to a bathroom where I collapsed to the floor and cried. After several minutes of uncontrollable crying, I pulled it together because I promised my little girl I would be there when she woke up.

Emma.....recovering

Emma…..recovering

This is recovery.

This is recovery.

Today, Emma is 8 years old and she has had 10 surgeries. Her vocal quality is much better than it was after her first two surgeries, but it is still a struggle for her just to speak and endure the many surgeries she must undergo. Since her first doctor knew so very little about RRP (like most doctors who have never even heard of the disease) we were forced to seek out a doctor that was more knowledgeable about RRP. After a few disappointing “second opinion” visits, I finally decided to contact one of the most knowledgeable experts on RRP in the US, Dr. Zeitels in Boston. I was concerned about the distance we would have to travel and the financial burden it would ensue in order to get her quality care, but I was willing to do whatever it took to get my daughter the best care possible. When I called, they were very supportive and told me they understood my frustration of trying to find a doctor that could help my daughter. They said there was actually a doctor a little closer to where we live in Ohio by the name of Dr. De Alarcon. He had worked with Dr. Zeitels and followed very similar protocols. When we met with Dr. De Alarcon we were overcome with relief to finally be  in the hands of a surgeon who knew how to treat our daughter’s rare disease and still manage to give her the best vocal quality possible. He has performed 8 of her 10 surgeries and has given her quality of life back, which is one of the greatest gifts ever. I don’t know if my daughter would even have a voice at all if it weren’t for him. He is certainly my hero.

Even though we have finally found the right surgeon for our daughter, the burden we feel from this awful disease inevitably persists. Traveling every 8 weeks to Cincinnati Children’s Hospital in Ohio has been physically, emotional and financially burdensome. It is roughly a 4 hour drive one way for us. Sometimes we have to leave as early as 2:00 AM to be there for our surgery times. It doesn’t help that they are in a different time zone than us. Then, by the time surgery is over, we are so emotionally drained, that the 4 hour drive back is a fight to stay awake and make the drive. We have stayed at a hotel for one of the surgeries, but then you have the added cost of the hotel. As it is, we have to pay $4500.00 out of pocket each year before our out of pocket expense is met for insurance to start paying 100% of the medical costs. This is roughly the same amount of money I see many of my friends using yearly to take a nice family vacation. Emma would love to go to Disney World, but instead, our money has to go to paying her medical expenses. We pray and hope that we can eventually save enough extra money to get her there before she is too old to enjoy the innocent magic this childhood favorite has to offer.

A Doctor's Pro

A Doctor’s Pro

Emotionally speaking, this disease has certainly challenged us on many different levels. When Emma was first diagnosed, the guilt I felt was overwhelming. I did not know how I could ever forgive myself and learn to live again. My grief was so dark and I was so unreachable. I often found myself wanting to fast forward my life to see how all of this turns out for her.  I thank God for my wonderful Husband and supportive family who never gave up on me in my darkest moments. I endured extreme grief and depression for almost 2 long years before finally finding an antidepressant that helped me cope. I thought about suicide often, but knowing my daughter needed me was what pulled me through.  She needs me to be there for her through this lifelong journey she now must endure with this awful disease. I will continue to pray for her, for a cure, for everyone affected by this awful disease daily, and will fight to get her the best treatment possible until the day I take my last breathe.

As for Emma, she never fails to amaze me with her strength and amazing courage. She is such a fighter. She is determined to make a difference! She has made her very own challenge in response to the ALS ice bucket challenge. She has challenged 1 million people to donate $1 to the RRP Foundation to help fund research for a cure. Her thinking is quite simple, if 1 million people donate just $1, a large amount of money can be raised without placing financial burden on any one person. I think it’s a beautiful concept and great goal for her to work towards. (Her challenge can be found on Facebook at https://www.facebook.com/Challengerrpdonation )

This is not to say that Emma has not struggled despite her astounding strength. She is always very nervous for her surgeries. She says she is scared she won’t wake up from the surgery. Hearing this breaks my heart. When she does wake up, she is in so much pain and then must be uncomfortable the whole 4 hour drive home. She can’t talk for at least 5 days after surgery, which is very hard especially when she has to go back to school. She is constantly asked by people what’s wrong with her voice, if she has a cold. She used to tell people about her disease, but she was tired of the funny looks she got from trying to explain. Now she just tells people that’s just her voice, how God made her. Just recently, she has been getting made fun of by a few kids a school. Thank goodness she has some really good friends that stick up for her.

Seriously, how adorable.

Seriously, how adorable.

In all that we have been able to tell Emma about her disease, we have not told her that the disease could one day take her life if it spreads to her lungs. As she gets older and will soon be using the internet, I know this is something she is eventually going to find out. It’s a worry you never want your child to have. Although spread to the lungs is rare, it is something we must never let stray too far from our minds. Staying up on her medical care is critical. We will continue to strive to give our daughter the best medical care possible regardless of the price tag. We just keep holding on to hope that a cure will be found. In the meantime, we take it one day at a time.

While we breathe, we hope.  Two thumbs up!

While we breathe, we hope. Two thumbs up!

In the last 3 years since Emma’s diagnosis we have found grace in the darkness. We have learned to live a “new” reality, to take advantage of every good, surgery free day. While we wait for a cure, we will continue to give Emma the best life possible between surgeries and love her and support her in every dream she has.

Such beauty and bravery

Such beauty and bravery

To close, I am going to ask that we all share this, press this, do whatever we can to help Emma reach her goal. She has shown so many of us the power of one….thanks again to Emma’s Mom for sharing her heart and Emma’s story.

Not Twenty Anymore…..

First, it’s official. I do have a heart!  (This is a joke between Lee and I, due mostly to my complete lack of a romantic heart.)  Again, though, I have a heart. I saw nuclear images of it!

A Heart

A Heart

Now, on to the blog…..I am not twenty anymore and if the current list of doctor appointments isn’t enough to remind me of that, a nuclear stress test was a well-played “gotcha” by those above wishing to remind me of said fact.  (We will leave out the new aches that seem to pop up daily now.)

“Stress Test” sounds simple enough.  No caffeine or chocolate for twenty-four hours and NPO after midnight the night before test…easy.  No other prep required.  No barium to drink, no cleansing process to deal with….piece of cake.  That should have been my first clue-the thought of “piece of cake.”  I’m that patient who can and does experience every side effect ever documented…..toss in what a lifetime of surgery does to your veins…and voila…..here comes my day.

My day began at check-in around 8:30.  I was soon taken to the back to start the IV that would be used to administer the drugs for the day. I was very forthcoming about my fear of IV’s and the scarring in my veins.  I strongly suggested ordering a local to help the process.  Thirty minutes later after an unsuccessful attempt to thread the IV and several tears down my face due to pain,  we stopped the process.  The person placing the IV did a great job-she was in on the first stick….it was me and my scarred veins that presented the issue.  Fast forward to the Cardiology RN being called in and finally the light-bulb going off that “we need a local if this is going to happen today”.  Call made to doctor for order, wait for it to come up to the office, and five minutes later-IV in.  (I cannot express in words the pain that is felt as an IV is thread past scar tissue.  Get a local.  Give a local.) Next she administered radioactive contrast and I began the one hour wait until first set of pictures (resting pictures).  At this point I was able to enjoy some water and wonderful crackers.

Finally!

Finally!

Resting pictures are then taken of your heart while laying on your back (very still) for about fifteen minutes.  Enjoy the little nap.  From there, in my case, it was on to the exercise room where I was given a lovely injection of Lexiscan.  (This was a chemically induced stress test.)  Before the injection, vitals were taken and I was told of the “possible” side effects.  Outside of the sudden cardiac event, I was able to enjoy every single one. (Sarcasm) Imagine running a mountain at full speed, realizing you need to stop for a break and somehow your legs don’t listen and you keep going…..that’s what Lexiscan does.  If that is anything close to what a heart attack feels like, I do not ever want one.  The shortness of breath, the pounding of your heart, the pain in your stomach, the leg cramps, the nausea (yes, I got a blue bag to hold), the room getting so incredibly hot….and then comes the headache.  Not a fan.  The bulk of the “stress” lasts about three minutes.  I felt pretty wiped out the rest of the day and it took a good while for the headache and stomach pain to fully leave.  Again, not a fan.

From there, you are monitored until your vitals return to normal and then you are given some caffeine to drink (and the Angels in Heaven rejoiced) and sent back to wait for about an hour.  At that time, another set of images is taken showing the “stressed heart.”

All said, from start to finish, it’s about a 3 1/2 hour process.

To quote my doctor today-“They let you leave the hospital, so there must not have been anything major seen.”  So, with that reassuring statement, the wait begins for the official report to be compiled by the cardiologist and sent over to my ordering MD.

There’s a strong family history of heart disease in my family tree, so there is a small part of me that does carry some concern, but I am thankful that this test is done and over and we will soon have a pretty good idea of the condition of my heart.  After so many surgeries for RRP, my heart health has been something of conversation before now.  What toll has my heart taken due to surgery?  What toll has a lifetime of strained breathing placed on my heart?  Now, we will have that snapshot.

I’m not a fan of Lexiscan and I hope to never meet her again.  She was not very nice to me!  I am a huge fan of Northwest and I am more than confident in the level of care we have with the Cardiology group there.  It’s nice knowing if something was to be wrong, I don’t have to travel to get a high level of care.

So, that’s my Nuclear Stress Test review and the announcement of the fact that I DO have a heart!!!  Now that heart may never be one that wants candles and flowers and all that romance stuff…but it’s there and it is beating!

(PS-how does one follow up a test to show the health of your heart?  Why with Freddy’s for dinner, of course.)

Vacation Review-Sandestin 2014

I love the ocean.  I love the beach.  I simply love everything about it-the sand, the water, the smell of the salt air, the way the waves roll up the back of your leg…all of it-well, minus the whole I am part of the food chain once I enter the water part.)  If I could figure out a way to pop a tent and call it home for the rest of my life, I would.  (With indoor plumbing, of course.)  I love the New England coast as much as I do the beautiful beaches of the Florida Panhandle.  From what I hear, I think I would say the same thing about the west coast.

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Growing up in Mississippi, going to the Florida panhandle is just what folks did.  The idea of possibly going to another part of the country to another beach area, just didn’t come up in conversation.  Some may call it the “Redneck Riviera”, but I simply see it as the closest thing we have to the Caribbean here in the United States.  Over my lifetime, I have visited the coast of Mississippi, Texas, Alabama and even the Atlantic side of Florida, but my heart belongs to that stretch called 30A.  Reaching from just outside Panama City and going west to the edges of Destin, it’s paradise.  “The Truman Show” was actually filmed in Seaside, which is on 30A.  Sandestin has been our “go to” choice now since our oldest was in early high school.  Nestled on Miramar Beach, just east of Destin, this resort has grown into almost a small town with the addition of shopping/restaurants, and everything you need to make a vacation comfortable.  We have been to the coast in May, June, July and August and this year we added October to that list….and it did not disappoint.

A glimpse into Sandestin

A glimpse into Sandestin

A Village Peek

A Village Peek

One of the biggest questions you have to answer before you book a trip to Sandestin is “Beach side or Bay side?”  We have done both.  We have stayed steps away from the beautiful turquoise water and we have stayed steps away from the bay and all the fun the Baytowne Village brings just steps away.

We love the ease of going to the “Village” when we stay on the bay-side in the village and we also love the ease of grabbing out beach gear and making the three minute walk to the beach.  One is not better than the other.  This year, the condo we enjoyed on the beach-side was undergoing some October construction, so we opted to trek across Highway 98 and stay in the Village on the bay-side.  It was a great choice for the October trip!  We were able to get to the beach in less than five minutes and in the evening were able to be in the Village after a short two minute walk.  The pool for our condo this year is my favorite pool of the entire resort, so that was an added perk!  (It’s a zero entry pool that at its deepest point is only four feet deep.  It’s a beautiful pool for kiddos, parents and adults who just want to enjoy the tranquility of the water without the cannonballs in the background.)  We were directly on the bay as well, so we had the beautiful Choctawhatchee Bay glistening between the tall pine trees that line the bay.

On the Bay

Beautiful

Beautiful Sunset

Evenings could be spent walking along the piers by the bay or biking the resort or walking in the soft, white sand of the most beautiful beaches in America.  Tennis and golf your thing?  More than you can possibly ask for….grass courts, clay courts…..several golf courses….all located in a gated, secure resort.  Dining, playing, kid/teen activities…all right there. This is not where college kids go for spring break…..winner, winner, chicken dinner!   We are huge Sandestin fans….now…we will be the first to tell you that if you go during high season-expect crowds.  That’s just the nature of the coast of Florida in the summer.  It’s never been intolerable, but I have to admit…October has been our all-time favorite visit.

The water did not have a speck of sea grass in it.  Probably the clearest I have ever seen the water.  Just beautiful.  Temps were perfect.  Warm enough to enjoy the water, the beach, the pools, but cool enough not to worry about heat danger.  (Take sunscreen!)

Beautiful Clear Water

Beautiful Clear Water

We did have one “rain day”, but even that was a fun day.  Two treks over to Seaside were both met with gully-washers and we finally got the message we were not meant to spend the day at Seaside.  Back to the Sandestin/Destin area for a little outlet shopping at Silver Sands (hello North Face, Kate Spade and Vera Bradley outlets!) and that was followed by deciding if it was a movie evening or dinner out.  (We opted for food, of course!)

It’s funny how you can spend an entire day sitting on a beach and look down and realize it’s six hours later than when you first sat down.  Beach life was how we spent our Saturday, Sunday, Tuesday, Wednesday and most of Thursday.  Toss in some time spent at the Destin Harborwalk to view the weigh-ins for the Destin Fishing Rodeo and food excursions…and that’s pretty much our week.  One of the biggest highlights of our visits to the coast each time is that I get to see my beautiful cousin, Jan and her adorable family.  Our second trip to Cantina Laredo with another snapshot of us all together.  Granny Page would love that we are able to see one another…even if it’s just once a year or so. Jan’s son, James, has to be one of the most gregarious kids I have ever met! Imagine a twenty year old bottled up in the body of a first grader!

It was so wonderful having our Josh come in for a few days (Fall Break) and this Momma heart just overflows with how much I enjoy time with this kid and enjoy feeding him!  One of the great things about staying in a condo is that you get a full kitchen and that kitchen made my baby boy his favorite sausage gravy and biscuits!  Speaking of our condo, we did have one HUGE issue during our stay……a tree frog.  I am so afraid of frogs it’s almost silly.  I had picked out my spot for coffee on day one and that spot was my friend…until…the frog spotting.  That frog took up residence.  Finally, in desperation to have my coffee spot back, I had my hero, Lee, bag the frog and set it free in the lawn area downstairs.  (I may have looked daily for the frog after that….afraid he would return.)

The FROG!

The FROG!

As with every trip to Florida, the day the week ends always brings me such sadness.  I’m confident I am a walking billboard on that day for “pity party 101” and how not to act when it’s time to go home.  Not only do I just enjoy the coastal world and all it offers, but my health does too!  I keep wondering if I can get a RX for beach relocation and have it covered by my insurance.  Pity party aside, I am so grateful for the time we did have on the coast and am already counting down the days until our next visit.  Sometimes, the best vacations are the ones where you go and simply sit and listen and watch….the vacations that restore your joy and force you to stop for a few days.  That’s Florida for this coffee girl.

Yes, this happened.

Yes, this happened.

Now to get you up to speed on some of our favorites of the week!

Tradition is that we eat at Pompano Joes for our first meal of the week.  It’s directly on the beach and you can sit and enjoy the waves and good food at the same time!  Some of our favorites there are the crab claws, fish tacos and fried shrimp and pineapple slaw.  (For shrimp folks out there, gulf shrimp simply put every other shrimp in the world to shame!  So sweet and wonderful!)

For those night we want to cook in the condo, a trip to Sexton’s is in order.  This is our favorite seafood store!  Such fresh seafood and so clean and you won’t walk in and be knocked down by the smell of fish. (Ya’ll know what I mean!)  We were so fortunate to be able to take Royal Reds home two different nights!  Three minutes with some Old Bay and just watch how quickly they disappear!  If fish is your thing, expect some of the best grouper and flounder around.  Several other options are there too, but I am a shrimp girl and just gravitate directly to those!  The folks there are so nice and will answer all your questions!  It’s a little bit of a drive from Sandestin as it’s close to the Destin Harbor, but it’s worth the drive!  Open until dark!

Dewey Destin is our next go to place to eat.  The fried oysters, shrimp and fish (grouper) are the best we have found.  Hushpuppies are tasty too, as is the slaw!  This is not “fine dining” and they don’t pretend to be.  It’s just well cooked seafood that is fresh off the boats.  The key lime pie-oh my.  Don’t share….you won’t want to!  Harbor side seating is available.

Louisiana Lagniappe  is the place to go for sure.  It’s pricey, but oh my goodness.  Make this your “special” meal of the week.  Yes, you will think you are lost when you pull into a residential area on the bay, but you are not!  They don’t take reservations and there will be a wait during high season.

Another Broken Egg in Sandestin at the Village.  We try to eat breakfast there once or twice during our stay. Most mornings we eat in the condo before we trek to the beach.  (Huge money saver there and bring a cooler and pack your lunch!)  Some personal favorites are the Grits with gouda, bacon, tomato and green onions, the French Toast with bananas foster topping, any of the scrambles and just a word of warning-portions are HUGE!  The steel cut oatmeal is tasty too and comes with real Tupelo Honey.

Sweet Bread French Toast with Bananas Foster Topping

Sweet Bread French Toast with Bananas Foster Topping

Those are our “go to” places near Sandestin to eat, but as long as you stay away from the super touristy spots, good food is not hard to find.  (If you like seafood!)  Chains are chains and we typically stay away from any chain that isn’t a local chain.  (I can get that food anywhere!)

When planning the trip to Sandestin you also have to decide if you want to rent via Sandestin (pricey) or an outside management company or owner.  We have found VRBO to be a great rental resource and My Vacation Haven has wonderful properties and quiet often has a coupon code.

Just no words for the beauty of the ocean

Just no words for the beauty of the ocean

So, pack your bags, grab the sunscreen, and leave your cares in the driveway and head on down to the beautiful Florida gulf-coast.

My Joy.....

My Joy…..

Dreaming of Florida……

Footprints....

Footprints….

Florida and Frogs

Just a quick update to express my sheer delight that October in Florida brings! What a treat this week has been!

We have had an uninvited guest since Monday night. A tree frog. In my coffee spot, on the patio. I am irrationally afraid of frogs, so this has been a morning and nightly issue. He is in my spot. I have tried my best “Sheldon” to get him to leave, but he just hasn’t responded.

This is my biggest problem of the week, and for that, I am thankful.
For today, peace put and don’t get stuck in a moment

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Happy Birthday Bubbie

Happy Birthday Blane!

Happy Birthday Blane!

Bubbie, “Blane”, turns two today!  One year and one month younger than his big sis, and eleven months older than his little sis, this little man is ten pounds of sugar, three spring tornadoes, and a whole lot of fun rolled up into one little human.  He is the one that runs and grabs that hug the minute he sees his Boppy and Mimi then quickly returns to whatever mayhem he was involved in prior.  He is a huge fan of cars and finds balls to be  hilarious.  He hasn’t quiet grasped the fact you cannot throw everything like it was a ball, so if it can be tossed or thrown (he has a rocket launcher for an arm)….get ready…it’s flying!

So, today, this family celebrates our “Bubbie.”  Blane you are a gift and we love you to the moon and back.

Boppy and Mimi

Fantastic Friday-Renee’s Story

Today’s Fantastic Friday RRP feature is by Renee Sawn.  Renee lives in Florida (ok, jealous of that factoid) and has been a very active member of the RRP community.  Read her story and notice that she does have specific financial needs that maybe someone out there can help with. The financial toll, even with insurance, is enormous and I cannot imagine the stress Renee feels on a daily basis.  Her faith in God is strong and she is always the first one to encourage a fellow RRP family member.  

Renee

Renee

I have RRP ( Recurrent Respiratory Papillomatosis )

I have had this disease all my life. I don’t have much of a memory just bits and pieces from my childhood dealing with this disease.  My first surgery was when I was a 8 (1978). Before my surgery I had been seen by many doctors … Trying to find out why I didn’t have much of a voice when I talked it was very hoarse. I remember going to speech therapist and being told after many sessions that I was not improving. I remember we took a long trip to a hospital.( All children’s hospital )  And finally my mom got answers and a diagnosis. Next memory was surgery day. I remember lots of ice cream and Popsicles and was told I needed to rest my voice for 2 weeks. I do remember after that people saying oh your voice sounds much better and telling them I had surgery to fix it… Time passed my voice started getting hoarse again.  Back then this disease was very rare to most doctors and they themselves did not know much information. So my parents didn’t know much either. They were told to have it checked every few years. When I did I was told it was scar tissue they were seeing and that is the reason for hoarseness…(now knowing it was tumors they were seeing) so at this point surgeries where never recommended. (I believe I dodged many in my life knowing what I know now).. some of the bad memories of having RRP .. All through my childhood I was teased because my voice was different from others. Called me names like froggy ..  Spent many times behind closed doors crying because I didn’t want people to know it bothered me. I had difficultly feeling confident about myself. I didn’t want to meet new people because I didn’t want them to hear my voice. I have been asked many times are you sick? Or sounds like you have laryngitis you should go see a doctor .Over the years I also had coughing fits.  Would go see a doctor and because of the lack of knowledge I was sent home and was told you have bronchial infection take these meds… With lack of knowledge  this is what I did …I never got better just dealt with it and ignored my my coughing fits and my hoarse voice thinking it was my normal….going forward to 1993 I started with a company cleaning houses ( didn’t have to do much talking for this ) within time I was promoted to training then sales then to working in the office. This required me to use my voice. Oh boy now I had to speak to strangers .. There wasn’t a day that went by I wouldn’t hear something about my voice…I would just say I’m healthy I have RRP and doc says I’m fine it’s scar tissue that makes me hoarse (at that time that’s all I knew) this was my normal ..   Skipping forward…     In August of 2013 I had totally lost my voice and had difficulty breathing. It started with having a hard time talking.  I found myself straining to get anything to come out … and then going to a whisper thinking I had laryngitis… Unfortunately it changed my whole journey of life…. Over the years I had accepted what I thought was my normal I had a hoarse voice and it had a name RRP… so at this time thinking this something different I was dealing with… Because of where my voice was I had been terminated from my job of 20 years. Because I could no longer perform my duties (I was an office manager and required me to have a voice)  I was at a loss..here I was out of work .. No insurance …I didn’t really know where to start … I was out of my comfort zone..  I knew had to find a doctor that could tell me what was going on. I ended up going to the ER … I was scared and breathing was difficult .. I didn’t have a voice .. I didn’t know what was going on … Well I was sent home with no diagnosis and told to go see ENT … I saw one the following day. I did let the ENT know as a child I was told I had RRP …lucky for me this ENT knew what the disease was. First thing he did was looked and said you need surgery … And stated he was not able to perform because he was not trained in this and the equipment to perform is not available in my area so I needed to make phone calls to find a doctor who did. I would like to mention he knew that I had just lost my job and had no insurance and my emotions showed when I was told what was going on. He walked me out to the front to pay for my visit and told the nurse no charge for today…my words where “thank you God Bless you there are kind people”…well onto my next journey…. That was a challenge … my voice was at a whisper and had to use the phone to call and explain to whom had answered the phone what I had and what I needed. I had made many calls and kept hearing no we don’t do that surgery. I was at my last wits thinking is anyone out there do this ? I called my ENT crying and let them know I couldn’t find one and it’s been very difficult to keep going because the more I used my voice the more difficult it was for me to get any noise to come out. They were a big help and the next day the office called back and found someone that just came into my area that could see me and was specialized in this disease. The office is an hour away from me. This is where my frustration comes in I HAD NO INSURANCE …NO JOB how am I going to pay for this. I reached out to find solutions,  had doors shut on me because my husband worked and made too much $$ for help ?? Not sure how this works for a family of 4 ( I have 3 children one living on her own 26 and two 13 & 8 ) with one income how this doesn’t qualify for NO help ..that’s when my ex- sister In-law started a fundraiser to help raise money. I was blessed by many to donate to help with getting me to my first visit for my scope. This is where it was confirmed I needed surgery. That was my first hoop .. Now off to the hospital to find out cost … Yikes $50-60k … Now what! I did lots of praying … Well this is where we qualified for medically needy ..so my surgeries where covered …   I had 2 surgeries in Oct & Dec 2013 that corrected this & actually improved my voice quality. I now go every 6 weeks for a scope to keep the disease monitored. It’s been a long struggle. I have had to find ways to pay my bills and medical expenses (if medical is under a certain amount it’s on ME) With yard sales , fundraisers , churches and family & friends I have gotten through …  I can say I do look at life in a different way. The small things in life have now become the big things in life… I have been searching over a year to find work with no luck of getting hired. I lost count of how many applications I filled out …

Many times I pointed my fingers at me and took blame for our troubles. I had anger and said the Why Me ..but had to keep positive on the outside… I am a believer of God and continue to keep my faith … It’s more stronger now than it was because each time I was ready to give up I said a prayer and my prayers and they were answered… I am blessed with a beautiful family. My 3 children & husband … They have taken the burden of my disease & have been so supportive.  I truly am blessed. My family & friends have been a blessing… Strangers that I now call my family have been my blessings .. an extended family the RRP family …

In February 2014 I was told I now have the cancerous form of this disease.   This will be monitored and also told more growth has formed.  My next surgery date had been scheduled August 22nd 2014 to remove more tumors that have grown back this time we were going to do what they call in office visit … No going to sleep , less time , and cost was not as high verses in hospital … I was all in ….  Well couldn’t do it … 3 Valiums later ( I get anxiety when I get scoped) and numbing several times my gag reflex just wouldn’t allow. So have to stick with going to sleep. .. We are going to give it more time to let growth grow more unless I see my a change on my vocals or breathing … So next visit Nov 2014 … I started a Facebook page to help me through this and for awareness … https://m.facebook.com/Sunshineswfl .. Keeps my mind on the positive ..

For now keeping my faith for that cure…

One Year….

Today...One YearToday, is one year since the last time I saw my Mother alive. My last memory of her is her walking me to my car and my turning around with this silly peace sign telling her not to do anything crazy while I was gone-she passed away the next day.  I sit here wondering how daughters walk this path without their Mom when the loss comes at a young age, because I sit here with just an empty place in my heart and I didn’t lose her until days away from being forty-seven.

She had been sick for a while.  She spent the last six weeks of her life under the care of hospice, mostly at home, but some days in the hospice house and she took her last breath under inpatient care. When I look back on the last weeks and think-“why didn’t it click”-I guess even under the care of hospice we, as humans, just don’t always grasp the finality of life on this earth when we learn the days are numbered in a much lower count than we had planned for.     We get the “chinese fire drill” moments where you are told it’s minutes/hours…..but when you see someone have days where they get dressed and leave the house and enjoy tidbits of life….it doesn’t click.  This is it….the final days….just doesn’t click.  Death still comes as a surprise.  Unexpected. Unwelcome.

This past year has been one where things have been seen that I wish I had seen before she passed away.  I suppose that’s life though…we always see more clearly in retrospect.  Today, I want to just let folks know that she lived.  She was here.  She was more than I realized.

The last time all the kids were together before she passed away.

The last time all the kids were together before she passed away.

Myra Janice Boren Page…..born August, 23, 1945.  Jim Boren, her Dad, was a MS Highway Patrolman and died at a very young age of pancreatic cancer.  I am the only living grandchild of her parents that has any memory of him.  A proud veteran, he was a survivor of Pearl Harbor.  Her mother, Louise Stoop Boren, was a force to be reckoned with.  There was something special between Granny Louise and me and I miss her daily….along with so many others.  She passed away several years ago due to liver cancer.  Her death was a shock as it was maybe three weeks from the time of diagnosis to death…she never left the hospital after her liver biopsy.  My mother has two sisters, both of which are still living in the Pickwick area….Cathy and Becky.  Aunt Becky lost both of her sons due to a tragic accident.  Dusty died instantly and Todd lived a few days longer.  Incredible strength.  Aunt Cathy has had several health issues, but she is a southern belle and I credit her with a lot of my “belle” tendencies due to summers spent at her house, along with Granny Louise.

Three Sisters

Three Sisters, 2012

My mother served in the Navy.  She met my Dad, a Marine man, while in the Navy and they were married very quickly thereafter.  I came along a little over a year later…I’m a military baby. (Probably where I get my restlessness over being in one spot too long.)  Then came Shelley about eleven months later and Tracy a few years later and then, gasp, a baby brother the day after I graduated high school!

Moms Military

Navy

Over the years, she stayed at home and worked….I recall the many hours she spent working on crafts (she was crazy talented) and you can look in my home today and see several of her treasures she never felt were all that great-they are wonderful!  I remember the hours she spent working at “Glo-Worm” in Memphis on pageant dresses, dance costumes….again, crazy talented.  My all-time favorite pageant/prom dress she made for me…all based from my silly ideas on what I wanted…she made it come to life.  She did not realize her gift, her talent…and sadly, I don’t think I did until she was gone.

This dress......no pattern...all her.  Amazing talent.

This dress……no pattern…all her. Amazing talent.

Because of her, I was given Mississippi roots.  (Dad has Texas roots, but we try not to hold that against him.)  I can fish. I can clean a fish.  I can cook and I do not consider butter my enemy.  Because of her, I love General Hospital (well, the old version, not this crazy new thing on now)….and she was given that love from her Mammy.  Because of her, I know no outfit is complete without a necklace and no one can ever have enough shoes.

I did not realize it until she was gone, but she is the one I learned that a Mom comes last from.  It was modeled for me and I just didn’t see it until she was gone.  My biggest cheerleader, my biggest critic, that person who you could show the “ugly” to and she was still there standing..waiting.  I think that’s most Mom’s and I’m thankful that I can honestly say I gained that trait from her…..I will take the “ugly” and I will not waiver…I will still be there standing, waiting.

In some of her last wishes, going to the beach was probably number one or two.  We couldn’t make that happen even though she had already planned out how it would all be…..so I think that’s a huge part of the reason we have chosen to head to the beach on this anniversary.  It’s where she wanted to go….one last time.  She loved the water as much as I do.

So, it’s a year and life has kept moving.  It didn’t stop, even though so many days-I wish it would have.  I’ve learned that death brings out the best and the worst in people.  I’ve learned the little things that make people tick are magnified in grief-positive and negative.  I’ve learned that there is no one who can replace the person God chose for you as your Mother.  I’ve realized that God did choose her as my Mother for a reason….I can choose my friends, but He chose my parents.

This year I have realized that everything that takes place after a person dies is for those around that person-not the person no longer here.  Not sure why I didn’t get that before now, but I didn’t. Honestly makes me wonder why we do most of what we do after a death…..seems almost cruel what we put a family through.

She is buried at the VA cemetery and one day my Dad will join her…..for now….we simply go visit her earthly resting place because we know it’s just an earthly symbol…she’s not really there.  As with any death, you go and ponder your regrets over missed opportunities and celebrate those memories that are now treasures.  I was fortunate to be able to spend almost every single day with her the last four months of her life….I have memories and moments that I never would have gained if I was not there.  I saw a side of her marriage I did not know existed…and it’s a treasure.  I saw who she was…not who I thought she was…and I am grateful for that treasure too.

One of the moments I was able to capture.

One of the moments I was able to capture.

I’ve wondered if when she walked to Jesus, were her parents and extended family there to greet her.  Is that what Heaven will be?  Will we be greeted by not only Christ, but also our family?  I’ve seen little things happen in this past year that I attribute to her being in Heaven….precious moments with my daughter and her children…I know my Mother had a hand in that….if you knew her, you know she would not stop talking until she got her way.  I have also wondered on many days what she is going to do to my Dad….let’s see….dogs are now “free-range Chihuahuas” , dogs sleep in the bed, dogs take their food to the bed, dogs bark nonstop and we won’t even talk about all the pictures now hanging on the wall.  (I simply try to not be too close to him on stormy days due to fear of a bolt of lightening coming down.)

Mr. B's....before she was sick

Mr. B’s….before she was sick

I get sad on those days I realize what all she is going to miss…the empty chair moments….her grandchildren getting married, graduating college, her great-grandchildren growing up….her baby boy one day getting married and having children and seeing him achieve the success she dreamed for….the thing called life that she will be not be here for.

The last time she ate dinner out.

The last time she ate dinner out.

Soon it will be five years, then ten years….and one day she will simply be that face in a picture people remember as they look through photos-my children’s children…..but she was here.  She was a force.  She was gifted.  She is missed.

Florida, Florida, Florida….Happy Dance

It’s almost here!  The pilgrimage to the panhandle of Florida!  Oh how my heart jumps for joy as I think of the powder soft white sand between my toes…..the warm clear blue-green water against my ankles (Footnote-Kim’s theory is above my knee…I become part of the food chain and that’s just  not appealing to me!)….the breeze as it gently blows across your face….the sounds of the water gently coming onto shore…the smell of the salt air….the glorious, wonderful, heavenly selection of fresh gulf seafood….a full week of no responsibilities, no cares, no concerns, and very little cell phone activity!

So, today, enjoy some memories of days gone by….and look for a few posts that are ready to go over the next few days!  Peace Out…and please don’t set up your chair and umbrella in front of mine……I called dibs!

Florida, my happy place....

Florida, my happy place….

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Morgan’s Story-Determination and Hope-You Are More!

Today’s “Fantastic Friday” RRP story is a feature on Morgan Toll.  I feel such a special connection to Morgan as we are both from the same area, have a story that really isn’t that far apart, and I know pieces of her family….she’s special and I hope you enjoy her story.  This is Morgan in her own words and I am so thankful she agreed to be the first story!  She’s amazing and it shines through! 

Little Morgan

Little Morgan

I was eight months old when I was diagnosed with RRP, from then on, until I was around 12
years old, I had over 200 surgeries. The doctors said I had one of the worst cases they
had ever seen, having to go into have surgery every week, as if it were routine. I was young
and because I had grown up this way, it was all I ever knew. I never saw my illness as a
tragedy; I saw it as my life because I never knew anything different. So brave

I’ve heard stories from my parents about how I would pass out, turn blue, and have to be
rushed in an ambulance for immediate surgery, or how the hospital once didn’t have the laser
to remove the papillomas, so I was put in an induced coma for a week to stay alive. Now
when I hear those things, it tears me apart because I can not even imagine how my parents
must have felt, feeling like they were losing their baby girl to this awful disease. I can tell
you that I remember the grape smell of the mask right before surgery, the toy room, and my
anesthesiologist that would perform magic tricks to calm me down. I remember my mom
and dad crushing up the Popsicle for me after surgery so I could eat it. I remember them
crying right before I was being pushed down long hallways as I spoke to my doctors, and
then, everything going fuzzy right before I fell asleep. When I was six, I went in for a check
up and they said I would go into cardiac arrest because not enough oxygen was getting to my
heart. I had to have an immediate trach put in. I remember them bringing in a puppet to
explain my surgery, but I didn’t really understand. Afterwords, I stayed in the hospital which
seemed like forever.

Beautiful Morgan
The trach, for me, is what set me apart and made me start realizing things were different. I
wasn’t allowed to do certain things that I used to be able to do, like going swimming or
taking showers, or playing in the sand. Every night I was hooked up to multiple upon
multiple machines. I remember it scared a few of my friends, and they didn’t really want to
sleep over anymore. I knew I was different and I didn’t want it anymore.
When I was ten, I saw a doctor in Colorado that began to change everything for me. He
started injecting the mumps virus into the papillomas which began making them disappear. I
also I had a rib graft done, where they took a piece of my rib and put it in my throat to
reconstruct the airway.
Soon after, the trach finally came out.
It was a miracle. I, one of the worst cases the doctors had ever seen, was being put into
remission. I could finally be a “normal” kid.
Even though the disease had disappeared from my life, it seemed to follow me.
My voice became the only concern in my life.
The constant questions and people thinking that I was sick became so ordinary but
the number one thing it has held me back from, is the one thing I love most, acting.
From the time I was small, I knew in my heart that being on stage was all I ever wanted to
be. Which is really ironic, given the circumstances I was in, so of course, everyone always
told me that it was not possible. In highschool, I felt like I had given up hope; I started to
believe everyone around me and believed that I couldn’t do it. So I pretended that it didn’t
bother me, that I never wanted to act, that I wanted to be behind the scenes. Her Dream
I watched as people around me got parts, didn’t memorize their lines and fooled around. I
stayed behind the scenes, watching as others did what I wanted to do most of all. Then when
I went to college, I took an acting class which was required.
We were all paired into two and had to do a scene. Mine was a scene from the play “The
1
Beautiful People” and it was dramatic and beautiful, but I was terrified. I didnt want to act in
front of anyone, I didn’t want people to make fun of my voice.
Once I had performed the scene though, I was hooked again. I knew I couldn’t give this up,
not anymore. I became a part of an acting group in the school, and began performing in play
after play, and taking as many classes as I could, working as hard as I could, wanting to learn
as much as possible about this wonderful craft that I love.
People were still telling me that I couldnt do it, telling me the only characters I could play
were sick ones, but I stayed strong and refused to listen.
I didn’t let this disease I once had take control of me again.
In my third year in college, I auditioned for the play “Fools” and I got the lead. It was the
first time I felt like I was getting the chance to prove that I could do this. Not just to people,
but to myself. Members of the acting group tried to kick me out of the play, they said I
couldn’t be the lead because no one would hear me, I fought back again and even more.
The first night of the play, in this small theater, the audience was packed. People were sitting
on the stairs and some had to be sent away, it was crazy. I was so nervous, but felt this
energy inside me that bursted out and led me throughout the performance.
When it was over, everyone began to applaud and stand up. My eyes started tearing up. I did
it, I stayed strong and proved that I can do this, and it was amazing.
Nobody could understand how much this silly play meant to me, and I would hold onto that
feeling for the rest of my life.
Then, last year, things started to change again. I started feeling shortness of breath and my
voice was getting weaker than usual.

Life Changes
I went in to see a doctor and wondered if there was any way I could get my voice fixed, after
being in remission for so long.
The doctor told me that my airway was narrow, the size of a three year olds, and that there
was no way to ever fix my voice. That I would never speak normally again.
It was a lot to take in. It was a hope I had in the back of my mind that very quickly started to
crumble.
I started seeing more doctors because of my airway. No one understood how it was getting
more narrow all of a sudden. The scar tissue, due to all the surgeries I had, was somehow
beginning to grow. I worried about having surgery, worried the papillomas would come
back if it was messed with, worried I would lose my voice all together.
I started going to the emergency room because I was feeling more shortness of breath. Soon
after, I decided to go to a doctor in Boston who chose to remove part of my vocal cord and
open my airway more. The surgery had successful results, but it did not last very long. After
I flew back to California, the scar tissue grew back, making my airway even smaller than it
was before. I became ill with pneumonia and spent three days in the ICU and on the fourth
day, I had to fly back to Boston to have another surgery. My breathing was getting worse and
worse; just getting up out of bed or walking across the room would cause me to be
completely out of breath.
Two months after my surgery in Boston, I went in for a check up at Johns Hopkins in
Baltimore and they told me I would have to have an immediate awake tracheotomy and I
would not be permitted to leave the hospital without one.

And It Was Done
My whole world seemed to shatter in that moment. I was so scared, it was happening so fast
and I felt so alone. I couldn’t believe this was happening all over again and I didn’t
understand why, yet I knew it had to be done. Today I still have the trach, and my doctors are trying to figure a way for it to be removed eventually. I currently have zero vocal cords but I still have my raspy voice.

Despite all that though, I am okay. I am actually more okay now than I ever have been. I can
breathe, and let me tell you, people can really take advantage of the whole breathing thing
because you don’t know how amazing it feels to breathe that very first deep breath for the
first time after not being able to breathe at all.
I have come to terms with my illness.
I know that it is all in God’s plan and no matter what happens, it will all be ok.
A lot of people might think that I am weaker because of all of this, but i feel so strong.

I am strong because I’ve spent my whole life battling this,
I am strong because I refuse to let someone tell me that I am less than because of it,
I am strong because I refuse to give up,
I am strong because every single day I am so thankful to be alive and breathing.
I am strong because I have God in my life, right beside me everyday, telling me that it’s
going to be okay.
I of course have my days where my heart breaks a little because of the things this illness still
holds me back from, knowing I may never be on that stage again. But what keeps me
together is that strength, the strength that tells me that no matter what, I am never going to
give up.
That’s what I try and share with everyone. I want everyone out there to know, anyone with a
disability, an illness, or a feeling like you are less than, I want you to know that you are more
than you could ever imagine. You are more.

A Woman of Determination

Normal is Boring!