"Little Levi" Krystosek tours the cockpit before his Miracle Flight.

How Miracle Flights Help Us Roll With My Son's Rare Disease

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I remember hanging on to the toes of my mother as she died. Her battle with cancer was coming to an end and I felt the need to tell her who all was in the room. My voice was close to a yell. ”Dad’s here, Paw Paw’s here, Me Maw’s here and I’m here!” I went on to tell my mother that it was OK. That she could go. I was 22 years old and I was granting my mother permission to die. Like what I said had any effect on how things were going to play out that day. I had no control. I was just rolling with it.

Fast forward 14 years later, as I sat on edge of a hospital chair listening to the doctor say that my child, Levi, was probably going to die. He was only 8 days old. I did everything right during my pregnancy. How could this be happening to us? I do not remember much from that day after the doctor talked to us. I zoned out shortly after he said, “…if this is the case, there is nothing we can do.”

What do you mean, nothing you can do? You are a doctor! Doctors fix patients. I don’t know if this did not sit well with me because I was a nurse or because I was a mother. But either way, my husband, a registered respiratory therapist, and I went home and did research on what they thought Levi had. We talked about it and decided together. If this is what he has, he is going to die at home with us and his sisters. The ball was officially back in our court as we rolled with it.

Long story short, that doctor was wrong. I was using special feeders to feed my son every two hours and he was hanging in there. It would not be until his first birthday that a doctor at a different hospital would question yet another possible diagnosis. At this point, we had already had two misdiagnoses. When the doctor entered the hospital room and kindly asked me to sit down, I thought, “Here we go again.”

He said, “Your son has Jansen’s metaphyseal chondrodysplasia.”

My response was, “Are you sure?”

He said, “Yes. I sent two different vials of blood to confirm it.” It had been genetically confirmed. But I had never heard of this condition and I was a nurse.

He went on to tell me that it was a very rare disease. At the time of my son’s diagnosis in 2007, he was one of 17 cases worldwide. Let that sink in. I had a ton of questions he could not answer. All he could tell me was that it was a type of degenerative, debilitating dwarfism. My son was going to be in pain. This was information I could not roll with.

The more research I did on my son’s ultra rare disease, the more I realized I was just rereading the same handful of articles reposted on different sites. The little bit of information I found was terrifying. It was hard to roll with. I realized I was going to have to share my son’s journey, pictures and information if I wanted to help future parents of children with JMC.

I also knew I had to find a doctor who had treated a patient with this condition. I had to find a doctor who would have an idea of what to do. I was a mother on a mission to get the best possible outcome for her child. It took a while, but we finally found that doctor. He was in Chicago, Illinois, and we lived in Ocean Springs, Mississippi.

We started flying up to Chicago from Mississippi when my son was only 18 months old. The doctor was great. He had some ideas on a treatment plan that would help my son get the best possible outcome since there was no cure for his condition. We were flying up to Chicago every six to eight weeks for IV treatments. We quickly depleted our savings account and maxed out our credit cards. Worry set in. We knew where to take him for treatment, but we were running out of the funds to get him there.

Then one stressful night, lack of sleep yielded a 2 a.m. internet search find that changed my worry into instant tears of hope and joy. It had been a long time since I had cried happy tears, but I just could not stop the tears of relief from streaming down my face. “Miracle Flights” will forever be etched in my mind with that joyful moment. We finally had a way to get him to out-of-state medical care, and it felt great! I could once again roll with it.

Miracle Flights celebrated their 100k flight in June 2016.
Miracle Flights celebrated their 100k flight in June 2016.

My son Levi is now 11 years old. Miracle Flights has provided him with 15 flights for medical trips so far. In June 2016, my son was Miracle Flights’ 100,000th flyer. Our family was grateful to help Miracle Flights celebrate this huge milestone. There is no way we could have done it without the help of Miracle Flights. Although my son will forever be under a doctor’s care and there is still no cure for his condition, we know that Miracle Flights will continue to help him get to the distant medical care as he needs. Unlike other children his age with his condition, he is able to walk, and I believe he has a better quality of life because of Miracle Flights.

If I could share just one thing with any other parent going through a rare disease diagnosis, I would tell them about Miracle Flights. Chances are, those families will have to travel to distant specialized medical care. They already have so much to deal with. Miracle Flights is a great resource for those who qualify.

It’s amazing what a 2 a.m. internet search did for our child; it allowed us to find him a way!

— Dona Krystosek, RN
Family Advocate, Miracle Flights

Learn more at Miracle Flights.

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5 Lessons I've Learned About Accepting Limitations With Illness

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With my chronic illness comes a lot of guilt. It is mostly guilt about being a disappointment to those around me. Guilt about the things I cannot do. Guilt about the events I miss out on. Guilt about the memories I cannot make. I also struggle with the many limits that come with living with a chronic illness. Sometimes it seems like there are more limits than there are easy decisions. I spent most of my adolescent years worrying that I would be forgotten and left behind by the people who told me to my face that they understood why I could not be there, but behind my back resented that I was not. It is a tough emotional weight to have to carry, especially at such a young age. I found that really only time and experience could teach me how to deal with these feelings. These are the best lessons I have learned:

1. Don’t blame someone for their initial disappointment.

It is the worst feeling in the world to have to tell someone I cannot do something and see the disappointment in their eyes, especially when I was really excited myself. It can be very overwhelming and cause excessive anxiety and depressionto try and console someone else while still patching up my own wounds. I try to remember that it is just a natural, human reaction to be disappointed when we do not get what we want.

I cannot blame people for that first reaction of frustration, but I do pay attention to what the person does after – after they have time to think about it. If they are still angry or upset with me, after they have been given some time to digest, than I have to question whether they can be the positive force I need in my life to persevere. Because that is what this is: perseverance. A person who cares about me will know how much it kills me to disappoint them, but more importantly, to have to miss out on precious time with them. Because that is really what I want most in the world is time with the people I care about. Every day, I worry there will not be enough of it. As I grow older, I notice the people who, instead selfishly complaining about how it affects them, turn to me and offer the needed reassurance and support. The ones who genuinely look me in the eye and say I will be missed and that I will get better soon to join them. The ones who reassure me that there is, in fact, time.

2. Remember that no one can do everything, and you alone will reap the consequences of overdoing it.

As the action-oriented person I am, some of those most painful words for me to say are, “No, I can’t…” I want to do it all, see it all, be it all, for everyone, all the time, but there came a point when I had to realize for my own physical and emotional health that it is just not possible. No one person, healthy or not, can do everything – attend every event, meet every obligation, live up to every expectation. There are some times when I physically should not do something because it could put my health at risk. That is really hard for me to admit because in many ways, I feel helpless: helpless against the situation and against my disorder.

With a fatty acid oxidation disorder, overdoing it – even by doing something seemingly minor – can lead to a quick downward spiral. One second I have what seems like trivial muscle aches and as soon as the next day, I can wake up unable to walk properly and be rushed to the hospital. This, I am not going to lie, is scary. To this day, even after 24 years, I have not ceased to be terrified. It is for that reason that I have found knowing myself and my health enough to gauge my limits is actually the most impactful way of taking back control and turning fear into power. Power to stop while I am ahead, to put my health first, to get better and to ultimately grow in the knowledge of my disorder.

However, as any world leader will tell you, with great power comes great pressure. There will always be people who do not understand. Honestly, no healthy person can really ever understand completely because they have never had to live through it. Just as those of us who have never lost a parent or been through severe trauma can ever truly understand what that person has been through and lives with every day, being ill, especially chronically, is not something easily understood. It is very complex—physically, socially and emotionally. It is not an experience that I would wish for anyone to truly be able to grasp because that means they have to go through it. But for those of us who are chronically ill, we must bear it and all the misconceptions and misunderstandings that come with it.

There are always going to be people who think you are exaggerating your symptoms to get out of something. Those people are always going to be around, but I have learned that, honestly, those people are not worth my time, and they especially are not worth jeopardizing my health to impress. At the end of the day, if I push my limits too far, no one will suffer the consequences – the pain, fatigue and wasted time – but me.

3. Do not grow angry at your illness.

I spent too many of my younger years very bitter against my disorder. I constantly obsessed over the questions, “Why me? Why did I have to get a rare, chronic illness that messed up my life? Why do I have to be in pain and miss out on some of the most important moments of my life? What have I done to deserve this?” It was not a fun way to live. I was constantly angry at the world and sometimes it would even come out on those around me who were only there to try to help. One day I realized none of those questions had answers and spending my time harping on unanswerable questions would get me nowhere. It is not like once I found the answer I would be cured, or even less sick. I had to accept and even embrace that this disorder, like it or not, was with me for life. The responsibility to make the best of it was also mine. My chronic illness will not define me as a person. How I am able to continue living a great life with a chronic illness does.

I began to use my knowledge of living with a chronic illness to become a more compassionate person and even help others who are struggling. By reaching out to others, I also started to realize I am not alone. There are so many people out there who live with illness or another sort of burden every day too. We all have our hardships and if we use our shared experiences to lift each other up, the power of that type of healing is immense.

4. Forgive yourself.

I often find myself overcompensating for my illness by trying to be perfect in every other aspect of my life. That kind of pressure only leads to one thing: stress. I am not perfect (not even close!) and I don’t need to try to be. Having a chronic illness is not what makes me flawed. Being flawed is a human characteristic. It is OK to be flawed. There are times when I am going to slip up, when it is going to get too overwhelming, when I am going to get angry, when I am going to push myself too hard. I have learned to forgive myself for those times. It is one of the most important things I can do because having a chronic illness is hard work. There is so much to juggle and as long as I am doing the best I can, that is what matters.

5. Choose those who choose you.

As I have gotten older, I have found one of the most important parts of life is not how many degrees or raises I get, not by which age I marry or have children and not by how many cars or houses I buy. What truly matters is the relationships I build and how I foster them. Are people better off because I am in their life?

The biggest piece of advice I can give regarding choosing which relationships to focus on, especially when you have a chronic disease, is choose those who choose you and continue to choose you every day, even on the bad ones. Don’t ever feel like you are not worth being chosen because your life may be a bit more difficult. Yes, life with you may be a little more unpredictable or stressful at times, but what you may “lack” you more than make up for with your dedication to being your best, healthiest self and your fighter spirit. Never forget that.

It is true that I may never travel to all the exotic destinations of the world. I may not be able to go to every party or be the life of every party. I may have to go to sleep earlier some nights and take more medication than any 20-something should have to, but the reason I do it, despite my own internal struggle most times, is so that I can wake up and be functional the next day. So I can be there to do my job, be there for my friends and family and, most importantly, live my life to the fullest and contribute to the lives of others. I may not always be able to be that spontaneous, live-life-by-the-seat-of-your-pants friend, but I will be there for you when you need me most, in those moments when you don’t feel like you have a place to turn. Let me tell you I have been there and the most helpful thing was having that shoulder to cry on. You will know I love you every day because no one knows better than me that love is by far the greatest healer.

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When You're Too Rare to Fit in With the Other 'Zebras'

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In medicine, a zebra refers to a very unlikely diagnosis. It comes from an old saying they used to teach medical students about how to think about medical cases that came to them. The saying went, “When you hear hoof beats, think of horses, not zebras.” So we know that Zebras are rare, but what happens to those zebras who are so rare that the other zebras don’t even know who they are?

I’ve been having a lot of medical setbacks lately, and have been struggling to get answers. We all know that the doctors aren’t always the best at understanding our rare conditions, so it is difficult to rely on them for support. Most times they simply add to the multitude of frustrations that we deal with on a daily basis anyway. Chronic illness survivors generally seek out advice and support from our peers, those who have been through exactly what we are going through. Zebras can sometimes find this a bit more difficult since we are by definition, rare. So, we tend to turn to social media outlets to find others in our situation.

The internet and social media have made it possible for members of the rare disease community to more easily connect with others around the world who have the same condition. We can provide support for each other, discuss different treatment options, and be a soundboard for when we have to make difficult medical decisions. Online “spoonie” communities have popped up everywhere to help people with all kinds of ailments cope. Many members of these communities say that without the support of their online friends they would feel isolated and misunderstood by everyone. But what do you do when you have such a rare diagnosis that even the online communities for rare diseases don’t know what it is?

This is the situation in which I find myself. I have a metabolic disorder that inhibits my ability to process certain proteins. It also causes mitochondrial dysfunction. Its symptoms are a culmination similar to those of mitochondrial myopathy, chronic fatigue syndrome, fibromyalgia, dysautonomia, gastroparesis, POTS, and many more. My disorder is what is known as an organic aciduria. There are many forms of organic acidurias, so I went to the Organic Aciduria Association to try to find some answers. I sent a message to the organization about my condition trying to get some answers, but the response I received in return was disappointing. I was told that my diagnosis, 3-methylglutaconic aciduria, is one of the rarest of the acidurias, and they had no information for me. No information!? How could that be? I was told to reach out to the members to see if anyone had experience dealing with it. I have yet to find anyone.

So what does a zebra do when it doesn’t look like any of the other zebras? Where do the rarest of the rare go when they need support? Don’t get me wrong, the other zebras play nicely. They try to support in ways that they can, they add me to their groups and lists, and chat with me. They do their best, but when it comes down to it I am still the only one in the group who doesn’t quite belong. I don’t have a group I can call mine.

When you have a chronic, debilitating illness you can become isolated from the rest of the world. It’s easy to fall into a depression without proper support. Having a sense of belonging to a bigger community is critical. That’s what so many “spoonies” have found through social media. I have found that although I may have people who are supportive, I have yet to find anyone who truly understands. I am the herdless zebra, and regardless of how much support you have, without a herd you are still in this alone.

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Why I Struggle When People Tell Me, 'I Hope You Are Feeling Better'

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I love that friends, family and even neighbors often think of me, ask how I am, or say they hope I am feeling better. It lets me know that I am cared for and not forgotten, even though my disease has pretty much caused me to live the life of a recluse over recent years.

However, it also conjures another emotional response. A response that I am sure many others with chronic diseases will relate to. It conjures a feeling of guilt and even frustration.

Why?

I have been contemplating that question for a while and I have come to the conclusion it is because I feel like I am letting everyone down. People generally like to read a good story with an introduction, a middle with a climax that is often dramatic but has a conclusion with a happy ending.

It is like that in real life too. If we hear someone is sick, we like to hear soon after that they are better. If we hear someone has a terminal illness or chronic disease that will progress rather than improve, well, what do you do with that? How do you find the right emotional response to the person living with those circumstances? The natural response is to run or feel anger or fear or deep sorrow.

Flight or fight!

People with chronic diseases have no choice but to fight, as flight is a little impossible for most of us. Those around us, searching for an emotional, appropriate response to the situation have little choice but to ask, “How are you today?” or to say, “Hope you are feeling better.”

The guilt and frustration of some people with chronic diseases is rooted in the fact it is unlikely many of us are feeling any better than we did yesterday, or the day before. And, it is likely that some of us will be on a path of getting progressively worse.

No one wants to hear that and no one wants to say that. It all sounds a little too dismal! I do not like giving dismal news, so I start to feel bad that I have to. It is either tell the truth (or a dulled down version), or lie. I have always been such a strong advocate of openness and honesty so, if I did lie, I would still feel overwhelming guilt.

How do we, those with chronic diseases, and the caring friend or family member, live happily ever after with a situation that is ongoing and burdensome to everyone?

We just need to keep trying to understand each other. The one with the chronic disease needs to understand that people really cannot find the right thing to say, because what can be said? The caring friend or family member also need to understand that your response may simply be, “Thanks for asking. Still no change or things are getting a little worse.” Depending on who you are talking to, you may feel comfortable to expand with a few details.

At the end of the day, contact with others is so important for our overall well being. My tip is once that awkward, “Hope you are feeling better today,” moment is out of the way, simply ask the caring enquirer how they are and get a conversation flowing that makes everyone comfortable.

If you are looking for genuine support, care, understanding and friendship, you are welcome to join my closed Facebook support forum, “Medical Musings with Friends.” It is a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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To the ER Doctor Who Told Me I Was 'Wasting Time and Resources,' Thank You!

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Dear Emergency Room Doctor,

Thank you for being such a jerk to me!

You may not have realized when you said I was “wasting emergency department time and resources” over and over that you changed me, but you did. While you may have thought I had “just a headache” and was “taking up space for patients in the waiting area who needed to be seen,” you were wrong.

See, I heard how it started. It’s just a curtain after all. I heard the triage nurse slam my file down on the desk and say the person in my room was here for a headache. I know how it must have seemed when you had a full ER for the entire three hours I sat out there waiting to be seen. You didn’t get it because you didn’t listen.

Listening is a key part of your job. It’s a part you failed at that day. You and the triage nurse decided I was there for drugs. I get that. I’m sure you get that a lot. But you missed that I had been in the hospital for three days and was just released a few days prior. You missed that I said the hospital neurologist on call had already called to say I was coming in and that the hospitalist team was ready to admit me. You missed the very key point when I talked… it wasn’t a headache, it was head pain.

The head pain was so bad, cracking my own head open by banging it on the floor seemed like it would be less painful. It was so bad that I had triple vision and could barely sign my name to paperwork. It was so bad, I passed out. It was so bad that I had a bag prepped and was willing to come back to the hospital after just leaving. But you missed all of that because you didn’t listen.

You may have had a bad day or had a lot of people who could have been seen elsewhere, but saying “every doctor tells their patient to come to emergency, that doesn’t mean you need to” wasn’t helpful. If my doctor tells me to go to the ER, what am I supposed to do? You have the medical degrees.

I ended up leaving that day against medical advice (AMA). Why AMA? Because the resident said I could die by morning if I wasn’t evaluated more, and you wouldn’t sign off. You told me over and over I shouldn’t be there but wouldn’t discharge me. So I left because dying at home on my bathroom floor was a more acceptable option than dealing with you telling me how wrong I was for five more minutes. Does that make you feel like a better, doctor?

I get that I have a rare disease. I get that you don’t come across it much. But why do you get to decide I am wrong when other people who would be taking care of me once I’m admitted have said I need to be there?

You may have been horrible to me, but you made me a stronger patient. When I returned a few days later and was admitted for the treatment I didn’t get when you were in charge of me, I was strong enough to say no when they wanted to discharge me. I knew I wasn’t well enough and they hadn’t found the cause, so I made them transfer me.

While you thought I was being overdramatic, which clouded my treatment, I made them transfer me to a hospital where they did find another problem — a problem that still may have been hiding today if you hadn’t broken me down so much that I started saying the white coat does not mean the person has common sense.

You broke me to a place where I no longer take a doctor’s word without finding out myself. While it may be slow progress in treatments, you taught me I can’t totally trust my care to a doctor without learning myself because there will always people like you around. There will always be a doctor who makes up his or her mind before even seeing the patient. There will always that possibility that I will run into someone exactly like you, and I will no longer accept it.

You may have broken me to tears once, but you taught me I need to trust myself before I trust the white coat. (But you will still never treat me alone because I have zero trust in you.)

Thank you!

Follow this journey on My Corner of the World.

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The Day I Realized Chemo Would Change My Life Forever

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This is an essay I wrote two months into my chemotherapy treatment for a freshman college English class. Today I am happy and healthy, however I am a completely different person because of this day.

​The phone alarm that is supposed to be a joyful morning song was comparable to needles in my ears on March 5, 2012. It was 7:45, and this is the earliest I have been up in months, and I had to put on my tough skin and be an adult today. I went into the typical freshman bathroom after I lugged myself out of bed, and the smell of vomit took over the bathroom because it is a Monday after a rough weekend for the freshmen of the University of New Hampshire. The cleaning staff has not made an appearance yet. I had to look my best because I was about to make a first impression on someone who would be a big part of my life for the next few months.

​I packed my black nylon bag and was frightened I would forget something on this day. I made a list the day before of what to bring so I would not forget anything from snacks, to needles, or vials. My morning consisted of me tip-toeing around my room in fear I would awaken my roommate, even though my alarm probably already did. Once I decided I looked worthy of a Boston city girl I took a deep breath because today my life would change for the next six to eight months.

​I made the walk down the three flights of stairs realizing these cement steps would be so difficult for me for the rest of the year. I walked out the heavy doors, and the sun was shining extra bright reflecting off the thin layer of snow into my eyes. I put on my tortoise shell Ray Bans to hide my eyes from the sun and so people could not see the tears I was holding back. Philbrook dining hall was my destination, and it was so quiet at 8:30. I ordered a large omelet because I needed something that would hold me over because I didn’t not know when I was going to be able to eat next.

I decided it was time to truly face the day, and I walked the eight-tenths of a mile to the Amtrak stop on campus. I sat at the picnic table and waited for the train for about eight minutes, and I walk up the three yellow-lined stairs and picked a spot to sit in coach so I would be riding backwards. When I ride backwards in any moving vehicle, I associate it with the happiness I had the one time I sat on the backwards seat in my aunt’s station wagon in fifth grade, when I was too young to understand the severity of any problems.

The train had Wi-Fi and I was beyond thankful because it allowed the hour-and-28-minute ride that began at 9:04 to pass like a breeze to 10:32. My appointment in the Yawkey Building was at 11, and I had no idea how to get there. The nurse on the phone told me to go out of North Station and take the white Partners bus because it is a shuttle bus that transports patients for Massachusetts General Hospital. I did not know where to get on this bus because North Station is like a maze to me. I asked a lady behind a window, and she knew the answer to my question she had a heavy accent and my mind was elsewhere for me to try to comprehend. I kindly thanked her as if I actually knew what she had said. I followed the crowd of businessmen and women rushing towards the sign to Causeway Street.

​When I walked outside, I felt almost violated by the number of people offering me a taxi ride to my destination. I saw the white bus on my right pulling away from my curb. I ran like people in movies run, waving my arms above my head to catch this bus. The bus driver stopped for me and I told him I needed to get to the Yawkey Building. He told me I was on the right bus and I looked up to see the crowd on this bus. About half of the passengers were completely bald and accompanied by a significant other or loved one.

​I got off the bus with everyone when I saw the sign on the building that said Yawkey in silver letters, piercing the eyes of anyone who looked at it because of the sun’s reflection. I walked past three ambulances into the entrance of the building. I followed the green signs in this 10-story building to the elevator. I got on the elevator with a woman who had a pink scarf tied around her shiny scalp and she was standing with her sister. I lit up the button that had an “8” because that is the child oncology unit. Both women were making cancer jokes, and one looked at me and said, “I’m sorry, it’s just my coping mechanism.” I smiled at her and told her not to worry.

​We arrived to the eighth floor, and I had to find my way to suite B. When I looked onto this floor, there was an array of colored papers that said, “I fought for” followed by a name. Others said, “I love my mom” or “I love my dad.” All of these signs were made for patients who were strong fighters. This hit me like a big yellow school bus. I was not the only person who has it tough and I was not the only person who is fighting.

​I got to suite B and a kind receptionist greeted me. I told her my name and she was smiling ear to ear that I had made it there successfully; everyone in the office knew I was coming today. I took a seat next to the mini aquarium in the waiting room and remembered always wanting one like that when I was younger. I wanted my own scene from “Finding Nemo” in my room. I called my parents in the waiting room to let them know I had made it to my destination successfully. Each phone call made me a little more upset I’d told my parents not to come with me today. I wanted to do this all by myself to prove I could. Why did I do that?

The nurse called me into the back and she complimented my outfit. This gave me a warm feeling in this office filled with warm-hearted people. When she took my blood pressure, I saw a bald girl who could not be older than the age of 4, and she yelled “Mommy, no!” when she entered the office because she had just realized where she was. I was taken to my room and offered a hospital gown, DVD list, and anything to eat or drink. I said no to every offer. I just sat there and stared at a wall.

​The walls of the room had a hand-painted beach scene. There were umbrellas to protect the painted people from the radiating painted sun. That day, I wish I could have been on that wall, but instead I sat in the hospital bed waiting to meet my next nurse. When I was sitting in the room, there was a mother and a father who were standing at the desk outside. Both were dressed in grungy clothes and looked very weary. I looked down by their knees and there was a girl who could not have been older than 2. She was sitting in a little red wagon that had tubes that looked tangled all around her. The little girl had a sock over her hand so she would not pull on the tube. I waved to her and the mom pulled the wagon so she was no longer in my view, and I didn’t understand why. After about an hour of waiting, my nurse entered the room and introduced herself. She apologized that they run on hospital time in the office and nothing ever is according to plan.

​The nurse began explaining to me what exactly Interferon-alpha-2b is, and she handed me a packet that felt like a novel filled with information. I began to read the side effects and pretended like I was accepting of all of them. She then proceeded to hold up a needle with water in it and pulled a fake rubber arm out of the cabinet. She taught me how to pinch a piece of fat, insert the syringe that has a half-inch needle, push the syringe to inject the medicine, and then cover it with a Band-Aid so blood does not get on any clothes. She asked me if I wanted to practice on the dummy, and I said no, I just wanted to get it over with.

​The next thing I knew I was drawing up the medicine from the vial. I felt as though someone else was inside my head telling my fingers and arms what to do. I felt like a zombie with little control of what I was doing, but my mind knew this had to be done. I pinched the fat of my belly like she told me to, entered the needle at a 45-degree angle, and injected the medicine.

The nurse told me if I were to get graded, I would have received an A plus. I was so proud of myself for doing this successfully, but then I froze. I did it. The medicine was in me. There was no turning back. There was no undoing what I just did, and this was a routine I would have to do every single night for the next six to eight months. I was now officially a patient on chemotherapy. I was now a fighter taking the medicine people with cancer take. I didn’t even have cancer; I had a tumor, and now there was chemo in my body. I wanted my mom. I wanted my dad.

The nurse could see everything that was going through my head. After all she was working in a child oncology unit. She probably dealt with this every day. She asked me if I was going to be all right. I tried to joke about it and say, “I guess there is no turning back now.”

​She smiled and said, “No there isn’t.”

​I started nervously laughing to hold back the tears I did not want to cry. She saw right through me and asked what she could do to make me feel better. I told her there was nothing, that I just wanted my mom and dad. That moment I looked up to make eye contact with her, and she told me I was brave. She started crying and told me I would be just fine. I thanked her and asked her to leave so I could call my parents so they could hear I managed my first shot out of the potential 238 I would be receiving of chemotherapy. This would be the last step in the process of being diagnosed with a tumor, having a biopsy to determine if I had cancer or not, seven root canals on my bottom teeth, and surgery to remove the tumor.

I was almost done but just beginning.

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Thinkstock photo by zlikovec

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