Fighter Family

Elli:

Throughout my own journey I have tried my hardest to remain positive, happy, and strong. I give a lot of credit to my two younger brothers, Cameron and Joey.

Ever since I was little, medical conditions have been a part of my family. When Cameron was born, instantly the doctors knew something was not quite right. After testing, Cameron was diagnosed with a heart condition called Aortic Stenosis. Throughout Cameron’s early childhood he was told he would never be able to play sports and would have to be very careful with any physical activity he was to ever partake in for the rest of his life. This was devastating to my parents. My dad’s dream of his first son being the quarterback of the Minnesota Vikings was now crushed. But as Cameron went for his annual check-ups, something caught the cardiologist by surprise. His heart was performing well. Really well. Cameron’s tight restrictions then lessened to  him being able to partake in sports with little cardiac strain. At age 5 Cameron found his passion. My family had belonged to a country club where we spent most of our summer days. Cameron would sit and watch the older kids flip and twist off of the diving boards into the pool for hours. It didn’t take long before Cameron was climbing up that diving board ladder and flipping into the water as well. Now, at age 17, Cameron is not only a Division 1 State Champion diver, but a national champion diver. He took his imperfections and turned them into motivation.

When Joey was born, everything was great. He was the fiery little redhead whose humor shined like no other. When Joey was 8 years old, we knew something was not right. At age 8 Joey was diagnosed with Type 1 Diabetes. After being diagnosed, Joey spent days in the hospital learning how to inject himself with insulin and poke his finger. He learned how it felt when his blood sugar was too high and how it felt when his blood sugar was too low. Day after day our family watched needles become a part of his life. Telling parents their son has a disease with no cure is far from easy. Our family worried about Joey. We wondered how he would deal with something so serious.. something that impacts his life every second of every day. With Diabetes, there is no escape. Joey has proven to us that nothing can stop him. At age 14 Joey is playing football and basketball. He takes care of his diabetes completely independently. Never once has Joey ever complained about poking himself with a needle at least 5 times a day. Never once has Joey complained about waking up in the middle of the night when his body is telling him something is not right. Never once has Joey wished he didn’t have diabetes.

For 19 years I have watched my brothers fight. I have seen them face their troubles head on. I have seen them smile in times of pain. I have seen them embrace their conditions and in return prove everyone wrong. They taught me how to be strong. They taught me how to succeed and live even with a little flaw following close behind.

Between a tumor, a heart condition, and a diabetic, the amount of support and help we have received is immense. As Joey has embraced his diabetes, we have too. Cameron has organized a charity called “Joey Sweets” which raises money for Diabetic Research in hope to find a cure. This is one of our family’s ways of giving back for all the love and support we have received throughout our fights.

I guess you can say, we are fighters.

The Joey Sweets Foundation: http://joeysweets.webs.com

Joey, me, and Cameron the morning of my 17 hour challenge

Joey, me, and Cameron the morning of my 17 hour challenge

Cameron, me, and Joey the day I came home from the hospital

Cameron, me, and Joey the day I came home from the hospital

Me and Cameron wearing our "Joey Sweets" shirts

Me and Cameron wearing our “Joey Sweets” shirts

The Joey Sweets Foundation

The Joey Sweets Foundation

Day by Day

Elli:

It has been a little over a month since my 17 hour challenge. Day by day I find myself feeling a little more like normal. I couldn’t be more pleased with how healthy I am. While I was given a 6 month recovery time prior to my surgery, I am one month into it and I am going out with my friends and returning to work next week. It is a miracle. I could not be more excited to get back to working at the James Cancer Hospital. Although I loved it before my diagnosis, my appreciation and connection to the hospital is now something much greater than just love.

Day by day my swallowing is improving. From not being able to swallow water, I am now able to eat soft foods and liquids without much trouble at all. Although the right side of my throat is forever paralyzed, with time I will be able to compensate and create a new “normal” for myself. My voice is weak. It is raspy and hoarse due to my paralyzed right vocal cord. Although it will never be back to my original normal, I am able to receive vocal cord injections which help with my volume and swallowing. So far I have had two vocal cord injections following my original 17 hour challenge. During the injection the doctor sticks a large needle through the front of my throat and into my paralyzed vocal cord. From there he injects it with something (I have no idea what…. but it looks like milk) and this makes my vocal cord larger, allowing my vocal cords to meet and produce sound and swallowing. The injection is uncomfortable. The middle of my throat is not some place I ever imagined receiving a shot at. Although the injection is not necessarily fun, it helps tremendously. It allows those around me to hear my voice better when I am speaking which you do not really think about how frustrating it is without a strong voice until you lose it forever. While the frustration is felt, again it is overpowered with thankfulness. My foot is still unable to move. This makes walking very difficult. Since my nerve compression damage is so high up in my leg, the recovery time will be long. Many doctors tell me close to a year, but nerves are something that leave you without solid answers.

Day by day through my troubles and improvements I never lose sight of my blessings. I am lucky. I am happy. I am healthy.

Blessed

Elli:

It has been 18 days since I had the baseball sized tumor removed from head and neck. After 17 hours in the operating room, one night in the “ICU”, 4 nights on the James Cancer Hospital head and neck oncology floor, 6 nights in the Dodd Rehabilitation Hospital, a 2 hour second surgery, and then one more night at the James, I am finally home. 

I am making progress. Each and every day is another battle I wake up fighting. As a result of my surgery I lost my external right carotid artery and cranial nerves 9,10, and 12 with damage to 11. The surgery went so well. As well as it anyone could have ever wished and prayed for. My incision is healing beautifully.

Due to positioning during the surgery, I am still unable to move/feel my ankle and foot. There was damage done high in my sciatic nerve and although it is very frustrating to be unable to walk, the nerve will repair over time and will fully heal.

I truly cannot begin to describe to you the amount of change that I have encountered within my life over the past 18 days. While the physical changes are currently the most apparent, they are the changes I feel the least.

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The scar is new. The bruises are new. The scabs are new. The leg damage is new. The inability to swallow is new. The inability to talk is new. The Horner’s Syndrome is new. The inability to move my right shoulder is new. The weight loss is new. The bags under my eyes are new.

But, I don’t care about those things. They mean nothing to me. They are frustrating and bothersome. But, I don’t care.

To me, what is most different is my mind; my mind and my heart.

Over the past 18 days I have never felt happier. In a time so easy to be down, I simply have never been happier. It is unbelievable. I know. I look at each day in a way I never knew to before. I think about how I wake up alive. I wake up breathing. I wake up surrounded by love. I wake up able to turn and tell my mom I love her. I wake up overly grateful. For anything. For everything. I learned quickly that it isn’t about solving all problems. Life is not about eliminating the imperfections. Everyone has battles and everyone has flaws. It’s about accepting those and learning to live with them and turn them into motivation. I can’t change my flaws. I can’t eliminate my inability to talk. I can’t eliminate my inability to walk. But I can do so much more than I can’t.

The tumor doesn’t matter.

The scars don’t matter.

My troubles don’t matter.

I learned what love feels like over the past 18 days. I have never felt more loved before. The smiles. The prayers. The flowers. The cards. The hugs. The kisses.

It is beautiful. Life is so beautiful. I am so happy this happened to me. I needed it. I needed to be shown the importance of life and love. The importance of each day. The importance of kindness and prayer. The importance of myself.

I love life now.

I was given these battles to fight and learn. To struggle and push myself. To teach and to love. I have done all these things. I will continue to do all of these things.

Love hard. Love fully. Love like someone is dealing with something so detrimental each day. Realize what you have and how beautiful they are.

It changes everything.

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Baby steps

Hi guys! Finally I feel up to blogging a little bit about my experiences this past week.. As DeShone let you all know, Thursday was a long day. After around 17 hours straight on an operating table, I was taken to the Intensive Care Unit at the James Cancer Hospital to spend the night. There they managed me carefully due to all the stress and changes made to my body. I apologize if my grammar is poor or hard to understand. I am sleepy and on a good amount of drugs.

The normal complications known from my surgery are taking their toll, but each day I feel a little stronger. I was taken off my feeding tube, central line IV, and my foley catheter. It is very hard to talk and understand my speech. I tend to have difficulties chewing and swallowing but they have improved and will continue to with time and therapy.

I will need lots of therapy. Unfortunately, as well as everything went during my surgery, I woke up unable to feel and move my lower leg/ankle/foot. Luckily and surprisingly, my brain and spinal scans came back normal, showing no signs of stroke during my long and intense surgery. It may take weeks to a year to regain motion within my leg but I will be working hard each day.

I am so pleased with how everything turned out. We are still waiting on the pathology report from my tumor and lymph nodes but that should be here sometime soon.

Thank you for all the love and support. I can not begin to explain how grateful I am each day.

More updates to come.

Thursday- Operation Day

DK:

While sitting in the waiting room with Elli’s parents and friends I decided to inform all of the for her about her progress.  This is the biggest mile marker of them all.  Welcome to April 16, 2015.

4:30 a.m. – ALARM

When the alarm went off I was awakened by a big hug.  I held her for what felt like forever wondering when would be the next time she would feel well enough to get out of bed on her own. I’m a pretty light sleeper and to my surprise, she made it through the night without tossing and turning.  I never really thought about how this day would go.  With very little mental preparation and little conversation I got ready, packed her bags, and got in the car with her family to head to the James Cancer Hospital.

6:15 a.m. – ARRIVAL

We arrived at the James Cancer Hospital and headed up to our separate waiting area.  All 16 of us settled into what would be our new home for potentially the next 10+ hours.  The nurse took Elli back to prep for surgery.  Her parents were able to head back with her and be a part of the whole pre-operation process which was not only the best for Elli but also great for her mother, easing the anxiety and nerves.  While back in the pre-op room, Elli was cared for by the best nurse, Nurse Karen.  This angel could not have done a better job keeping the vibes of the surgery positive and explaining each and every step that she would go through before the operation. She explained how the surgery process would go while she was under, what would happen when she woke up, and what to expect as she began recovery.  2 by 2 the rest of the family was escorted back to wish her the best and continue to show the support that has poured in from the first day she was diagnosed.  Her parents and brothers saw her at 8:15 and then she was off to surgery to get fixed!  Now its time to wait for updates which we were told would come every 2 hours.

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9:48 a.m. – FIRST REPORT

If you didn’t already know, Elli’s mother works at the James Cancer Hospital.  So as we start the hurry up and wait game, her co-workers are coming in one by one to wish the family well and show their support.  Every time someone would come in the door, we would all look up to see what the first report would be on the progress of surgery.  At 9:48 the nurse came in to say they were still “positioning” her for surgery.

10:10 a.m. – INCISION

Shortly after, the first incision was made.

12:25 p.m. – REALITY CHECK

Dr. Prevedello, the neurological oncologist, finally came in after what felt like forever and brought some shocking news.  During the operation, the doctors sent shocks to her wrists to see how her brain reacted.  Unfortunately, when a shock was sent the doctors saw a significant drop in brain wave activity and had to stop the procedure immediately.  At this moment they began to question whether or not the operation was the best for Elli. They repositioned her body and instantly those brain waves came back fully which allowed them to decide to keep going with the procedure.  In reaction to this minor setback, the doctors decided to monitor all brain activity for the rest of the surgery.

While it was described to us as a minor hiccup in the procedure, we thought it to be more serious. In reality, this information just caused the surgeons to be a little more cautious.  Learning that they had to alter the initial game plan changed the mood of our waiting area completely. We’ve done everything possible to keep our minds off of the situation but this mishap has brought our attentions right back to the severity of the operation.  A 12:30 celebration of Mass at The James’ chapel was a great idea.  Minds began to ease and nerves began to settle, especially for Paul and Kristin.

2:02 p.m. – RESECTION PROCESS

Update is positive.  Now that they have repositioned her, her brain waves are stable and they are proceeding along with the resection of the tumor (whatever that means…).  Things are going “well.”

4:10 p.m. – FAITH

While we watch the nurse walk down the hall towards us, a doctor enters the room of another family awaiting an update.  The nurse reports to us that they have started to work on the tumor around Elli’s carotid artery and that things are progressing as planned.  Unfortunately, it was very apparent that the family down the hall did not receive good news.  The doctor left very quietly and the family left hugging and in tears.

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6:25 p.m. – ROUTINE

“All is well. The doctors are making continued progress.”

7:05 p.m. – GOD IS GOOD

Two out of three doctors came in and began to explain all the work they have done so far. There is no way to put this into a great colorful synergetic paragraph with the emotions I’m feeling right now so I’m just going to list everything I know.

-So far the 2 doctors have taken out 95% of what appeared to be a baseball sized tumor.  They were surprised in finding that this paraganglioma tumor, which is typically “soft and squishy,” was very tough and firm and was described to us as “leathery.”

-The tumor has been growing in her skull for 8-15 years and in doing so, has engulfed nerves 9-12.  The only way to remove the tumor included removing the nerves as well.  The doctors don’t know whether or not those nerves were already accounted for in her compensation of the tumor or if removing them will cause further complications.

– When removing the tumor, they had to adjust the lower end of the facial nerve which will cause a lot of pain in recovery and also loss of mobility on the right side of her face but Dr. Old believes that she will be able to recover completely from those difficulties.

– The infamous carotid artery.  He explained that the external portion of the carotid artery was completely engulfed and feeding this tumor substantially which caused the thick, leather-like feel of the tumor. The job of the external portion of the carotid is to supply blood to the tongue, vocal chords, face, mouth, etc. which explains the loss of these functions on her right side. The only blood flow that the brain received came from the internal portion which was easily pinched with the movement of her neck which explained the bad feelings she felt before.  When removing the tumor, they clamped the the whole carotid and removed the part of the tumor that included the external carotid. Then when they released the clamp, the internal portion took all the blood flow and ran perfectly fine to her brain. Success! No bypass is needed so far.

– 5%.  The remaining 5% of the tumor is embedded deep into her ear bones which will cause for a long removal process from the ear oncologist.  He is currently drilling into this part of the tumor in attempt to remove it completely without touching the remaining nerves, jugular and salvaged carotid. This will be tough but Dr. Old ensured us that it is completely possible and everything that this surgeon can do reduce 5% to nothing will be done.  The ultimate goal obviously is absolutely no more tumor.

– Cancer?  Without being direct, Dr. Old explained that the concerned lymph nodes were removed and seemed to be as large as expected.  We will not have any sure answers until pathology gets back to us within the next week.

– This experience was filled with love, tears, joy, and most of all God.  There are no words to explain the vibes of this waiting room right now.  The fear is replaced with hope.  The isolations are replaced with hugs.  The silence is replaced with gratitude.  The whispering is replaced with prayer.  God is good and the finish line is near.

12:25 FINISHLINE 

I’m sorry that it took so long to get to the blog. The night got a bit overwehlming.  The doctor informed us that the operation is finally over. The hands of God replaced the hands of the doctors and was able to remove all of the tumor successfully.  The power of prayer is indescribable. 

While finishing up the post evaluation of the procedure, the doctors noticed that Elli was not able to move her left leg from the knee down. My heart dropped hearing this news. For the first time all day I noticed a change in one out of the doctor. He was very concerned which in turn made us all very worried. She is going to have to do some tests through the night to watch the functions of that left leg. May the lord bring this beautiful girl back to 100% normality.

Other than a few minor detours on the trip…

Elli beat Thursday.

Tuesday

Today I had my “Balloon Occlusion Test”. My family, doctors, and I were all surprised because I PASSED! This is great news. This means that during my surgery, if my carotid artery is unable to bypass safely then they can sacrifice it and I can function only with my left carotid. (A carotid bypass for me would mean they would take a vein from my lower leg and replace the carotid artery that runs through my tumor with it).

The test itself was crazy. Being awake while operated on was something I could have never  prepared myself for. It helped to lessen the fear by the fact that my surgeon had Lady GaGa Pandora Radio playing the whole time .

Before my procedure I was sitting by myself in my pre-op room. That is when  the situation  I am in really began to take its toll on me. With an IV in my arm and oxygen in my nose, I started to feel the seriousness of my condition set in. I finally felt sick.  I finally truly began to realize that all the things these doctors were describing were about me. I felt tears in my eyes for the first time at a doctors appointment. I could not hold them back. For the first time my parents were sitting in a waiting room away from me, worrying about how I felt and how I was doing. I felt their fear and they felt mine.

I have never found comfort in anyone more than my doctor, Dr. Matthew Old. He is incredible. From the friday night calls making sure I am okay, to coming and sitting with me in my pre-op area to make sure I am ready for a procedure not even done by him, he makes me feel as if I am in the absolute best hands. I will never know how to thank him enough for helping me during this time. Not even for the medical treatment, but the personal aspects that he has taught me about life. I know the type of person I want to be. I know the type of doctor I want to be. I know the type of friend I want to be. I want to be just like him. I understand that it is common for most 19 year old girls to want to be just like Taylor Swift or Jessie James Decker, well I want to be just like Dr. Old.

I beat Tuesday.

Monday

Today is Monday, April 13th. This marks the first day of my surgery week. I woke up and arrived at the James Cancer Hospital at 7am. From there I was prepared for a baseline “brain spect scan” for a pre-surgery I will be having tomorrow. The preparation included receiving an IV which then injected a radioactive substance to show the activity of my brain at its current resting state.

Tomorrow is a big day. I have my “balloon occlusion test”. This is a procedure where my doctor makes a small incision in my groin and places a catheter up into the carotid artery that runs through my tumor at the base of my skull. At the end of the catheter is a small balloon. The doctor gradually inflates the balloon, blocking off the blood flow to my brain from that artery. Because the doctor needs to see my level of responsiveness as the blood flow is reduced, I’m awake for the procedure. I am having this test to know if during my big surgery, if my carotid artery is damaged, whether or not a carotid bypass is mandatory. It’s a scary thing. It all is. But it is what I have to do in order to get better.

I cannot believe that this week is here already. I am nervous.. so nervous, but beyond ready to get this surgery under my belt. Everyone is nervous. The sleepless nights are only getting worse. I see the emotional strength in not only myself, but those around me, lessening. Now we are focusing on things day by day. I never imagined feeling the way I do now. I have never been more scared. As the days pass by so quickly I know soon I will wake up living a much different life. Although there is no way to prepare for something like this, I feel as ready as I could be. I am ready to be healthy again. I am ready to live a normal college life. I am ready to start fresh.

I beat Monday.

Lucky

Elli:

Today is April 1st. It has been a month since I was told how much my life was about to change. While the news was given to me weeks ago, I am just now starting to process it all. Finally, it is all truly sinking in. I remember sitting next to my doctor in the small consultation room as vividly as I did the day after. As we first looked at the images of my tumor, the feeling I felt was far from normal. Surprisingly to many, I did not feel sad. I did not cry. I actually smiled. I did not say much as he pointed the bright white spot out to me on the computer screen. I was in shock. But now, as the days go by, the reality of my situation takes its toll. The scans, tests, needles, and doctor visits have slowed down. While most are under my belt, the waiting game begins. I know staying busy is what is best for me. Having something else to occupy my mind helps, but I don’t have the desire or energy to do many things. The past couple weekends I have made plans to do many fun things with family and friends, up until the time of the events I love the idea, but when the time comes, no part of me feels up to leaving the house or going out and trying to forget what is currently constantly on my mind. It doesn’t help that I don’t sleep much. It isn’t that I lay there sad or upset, I just simply cannot sleep.

I understand that the way feel sets the tone for those around me. A good day for me means a good day for those so close to my heart. Fortunately, I have dealt with health battles of loved ones before. From those battles I know that being strong is the only answer. Each day I do surprise myself with my strength. I am so proud of myself, really. While it is easy to feel sorry for myself, instead I feel beyond blessed that I am the patient in this situation because know that I am tough enough for anything that is thrown my way. I am so glad I am the fighter of this battle.

I am still working at The James Cancer Hospital on the surgery floor. While I love working there, it feels odd. I find myself picturing my family sitting there in my waiting room. While at work I see the fear on the families faces, I also see the hope and strength within their hearts. It motivates me. It shows me I will be okay. It shows me my family will be okay. Being so familiar with the environment that I will be in myself is also reassuring. I know exactly how I will be cared for and who it will be by. I know just where I will be and how long I will be there. Everyday I look through my upcoming surgery schedule. Seeing my name on the list makes my heart drop. Seeing that my surgery length is the longest on the list also makes my heart drop. I try not to look, but I can’t help it.

Each day my spirits are lifted by multiple people. I never knew how loved I could feel until the past few weeks. It is unbelievable. Messages, cards, packages, flowers, hugs. Even from those I have never met. It is beautiful to see how caring people can be. I have a different appreciation for life now. I truly do. I never knew how much a simple smile could impact someone’s day.

I am lucky.

Priorities

DK:

The paradise of being with my girlfriend for 10 days straight and being able to hold her hand through some rough scans and exams is done.  I’m officially over the first steps of shock in this situation.  Spring ball has started and like usual my priorities adjust once again. Although my physical presence is out on the practice field and in the meeting room, my mind never leaves her.  I thought that maybe football would be my get away but in all honestly it becomes some of the worst times of sadness.  Being the third string QB at this point in my career, I do a lot of standing around and watching while the guys ahead of me take reps.  Those times used to consist of learning as much as I could.  Now, after having a year under my belt, the rookie installs are embedded pretty deep so I catch myself mentally leaving the turf and thinking about how Ell is feeling or if she slept the night before or if she will be able to text me in the recovery room after her surgery or anything else that has nothing to do with football and everything to do with the beautiful girl laying in bed 271 miles away from me. 

 

Life Lessons

Elli:

My life has changed dramatically over the past few weeks. My greatest stress went from worrying about a general chemistry quiz to whether or not I would ever hear from my right ear again. As I have always been, I worry a lot about the people around me. I want them to be happy, even if it sacrifices my own happiness. But lately, I have learned to be a little selfish. I have been putting myself first. I have been doing what I want and hoping those around me understand. While some do, others do not. I think sometimes it takes something bad to happen to realize how important it is to do what makes you happy. What is beautiful to me is that during hard times the people that are supposed to be in your life put away the past and are there for you regardless. It truly is a time to come together and to recognize the love that surrounds one another. People make mistakes. I have made mistakes. But those who have seen my flaws and still support me in difficult times are keepers. I have yet to have a day go by without feeling beyond lucky. Although the circumstances are far from ideal, I am blessed with a beautiful family, great friends, and incredible surgeons. I am ready for whatever this obstacle brings me.