hi, my name is erin macbean.
& this is my story
When I was seven years old I imagined myself becoming a great deal of things; from President to doctor, actor to rock star…and, yes, I even dreamed of being a carnival or circus performer…you know one of those aerial gymnastics performers that defy gravity on those silk ropes. Little did I know 20 years later I would be saying, “Hi my name is Erin MacBean, and I’m a Carney.” ^.^
Ok, so it’s not the Carny I was dreaming of back in the day, but being diagnosed with Carney Triad feels a lot like being center stage of a three ringed circus with doctors acting as the spectators.
My Carney story started two months after I turned 16. Up until that point I was a healthy and very active kid. I had never been to a hospital, and my doctor’s visits were the common check-ups or flu bug appointments. So when July came around and I started to feel tired, dizzy with a lack of an appetite, I didn’t think much of it. I thought I had caught a bug that was going around and it would just be a bad 4th of July that year.
Three days later, my dad spotted me crawling from my bedroom to the bathroom, and asked, “Why are you crawling?!” Even with my racing heart, body trembling, and tunnel vision, I was more worried about having to pee than why my body felt so horrid. After all, it was just a flu bug that was kicking my butt, right? Riiiiight….Thankfully, my dad knew it was something serious and called to my mom. It took only a few minutes to get to the car and race to the All Children’s hospital ER. At that point, I think even my parents thought they’d run a few tests and then give me a pill to make me all better.
We arrived at the hospital and I remember having to take four breaks during our walk from the parking lot (about 200 yards) away from the ER doors. I had to stop and catch my breath and I felt very close to what I’d imagine was fainting. (I’ve never fainted before so I can only guess.) Once I was called back, the nurse took my blood pressure and heart rate. My blood pressure was 188/110, with a heart rate of 187. I didn’t know what it meant, but when he pulled around the wheelchair so I could be wheeled back to an ER bed, I figured it wasn’t good.
Fast forward about eight-hours, and a bunch of blood tests and such later. I had about seven or eight strangers in white lab coats surround my bed and look down at me.
“It just doesn’t make sense,” one said. My parents asked what was going on and that was when the ER resident doctor explained. My red blood cell count was at 6.1, normal people have a count of 12-14, and yet my blood pressure was extremely high. It didn’t make sense to them. Low blood count was supposed to mean low blood pressure. They asked if I was throwing up blood and I shook my head, I hadn’t thrown up at all. It baffled them even more.
This confusion led the doctors to test my catecholamine levels right away. Most pheo patients can say they live with the symptoms of pheos for a long time before doctors even test for catecholamines, so I got lucky on that aspect. I was admitted to the hospital for four days while a number of tests, scans and other things no 16-year-old should have to go through were done to me. Everything came back normal, except for the high BP and heart rate with low blood counts. After two units of blood transfusions I felt wonderful! I wasn’t dizzy, and I didn’t have the tunnel vision anymore. I still felt my heart racing and it had a funky rhythm, but I had been given three different medications for that, which helped. I wasn’t thinking long term at this point. I thought I was just going to need the meds for a while until I got better.
The following week we found out the catecholamine results and my initial diagnosis. I remember sitting in the room with my nephrologist, one of the many doctors I now had, but this guy was the main one. He flipped the chart and looked at me saying,
“The good news is, we know what’s wrong. Your catecholamine levels came back extremely high. Catecholamines are what make up adrenaline. You have 50 times more adrenaline in your system than you should. There’s only one thing that could cause levels like this, it’s called Pheochromocytoma.”
“Pheo-what-a?” I asked, at the same time my parents were asking what that was. “It’s a rare tumor….”
Ok. This is where everything stopped for me. I was 16, never had the experience of hospitals, but I knew the word tumor meant cancer…cancer meant death…oh my god I’m 16 and I have cancer. I’m going to die! I did not hear anything else that was coming out of his mouth as he was explaining, I just remember my head falling into my hands and crying as quietly as I could so my parents could hear the rest. When he finished I think the doctor finally glanced my way and saw my panic and he put a hand on my knee.
“It’s going to be ok,” he said. “We don’t know why you are bleeding internally, but I think if we locate the tumor and get it out we will be able to address the blood loss issue,”
I took a breath, but it didn’t help. We left soon after with more questions than answers.
That’s how it all started. Life completely changed for me soon after. Oh, I tried to remain that normal active teenage girl that volunteered for everything. I was in a performing arts magnet program in high school which demanded an hour extra of school every day, plus all the afterschool rehearsals, tests, and performances. I was in accelerated courses for the non-magnet classes, straight A’s, in committees and groups…I was busy! But being busy in a body that hated me wasn’t a good mix. My junior year of high school consisted of many absences, and hospitals. Every Monday I was down at the hospital to get my blood levels check. Every third week I was admitted for two days at least for blood transfusions, despite the iron supplements I was taking. I went through scan after scan, and still there was no sign of anything.
They started to doubt the pheo diagnosis … I didn’t sweat like most pheo people did, I didn’t have stomach pains like some pheo people do, I didn’t have the extreme fears like other pheo people had, and I only flushed when I was standing for hours in the Florida sun … but the biochemical results kept coming back with the extreme high results so we kept hunting for it.
For that year I was treading in rough seas, and for every scan that came back clear it was like a wave crashing over me pushing me further down. I got extreme mood swings, but not just rage as most pheo people have reported. I would be extremely happy at points, or extremely depressed. It was like you take a normal person’s emotions and magnify it by 100 … that was me every day. I had strange fears like talking on the phone, and doing anything for the first time was always hard for me. I would also fear taking tests at school, but I looked at it as a bonus curse. I would over study to make myself feel confident that I’d do well on the test. There would still be fear going into it, but as soon as I saw the questions I would calm seeing I knew the answers. I saw it as a bonus because it got me A’s, but a curse because I had no life! Oddly enough I could still stand on stage and perform in front of hundreds of people without breaking a sweat. So I just avoided the things that made me feel uncomfortable, like phones, and didn’t have the anxiety issues as others have described it.
The following is part of a journal entry I wrote during those times
I’m always tired, but never able to sleep. I keep waking up, or I just can’t get back to sleep. When I walk my arms and legs feel very weak and I get a shortness of breath. (I feel as if I have walked miles instead of a few steps, and each step is like I’m waist-high in sand.) When I stand still, I often have to catch myself so I won’t fall over. I get dizzy often, as if the world suddenly shifts under my feet.
If I push myself to continue I feel ill, sick to my stomach. My muscles and joints start to ache and lock up. My torso gets really hot to the touch, but I never sweat. I can’t sweat. Sometimes my hands and feet get really cold and the veins on my legs become apparent, creating this awful blue spider-webbed pattern. I’m afraid to wear shorts, even in the Florida heat, because I do not want people to see my legs that way.
If I continue walking still after those signs my heart races, my hearing becomes muffled as if I have my finger stuck in them, and speckles cloud my vision. Then I start to shake and get tremors. By this time I need to lay down, sitting won’t even help. Until my heart calms and my hearing comes back, and the dizziness fades, I stay still.
The worst is when I get those feelings while I’m laying down already. It pushes me into a panic because there’s nothing I’ve done to cause my body to go into a fit. So there’s nothing I can do to stop it, other than rely on the pills and pray they calm me down. I just have to wait it out.
I cry a lot. My emotions are quick to happen and slow to change. Between the episodes I’m calm, happy as I can be, thankful to be feeling well. But as soon as I start to feel bad, all the stress all the depression returns. I get angry and sad, I feel crazy at times. I become afraid of every little thing…even though I know I will feel better again shortly. It’s as if my world at that very moment is crashing down upon me.
I get terrible headaches, I drink all the time but still feel as if I’m dying of thirst…food often upsets my stomach, and I eat baby portions throughout the day, and most of the time I’m forcing myself to eat.. I am not hungry all that often.
I worry about everything about me and everything I do. I rely on others to make decisions for me. The ridiculousness includes me being unable to make phone calls to friends and family. What kind of teenage girl has a problem talking on a phone!?
Me, I guess.
It sends me into a panic every time. I can perform on stage, alone, and in front of hundreds, but please don’t ask me to make a phone call! I’ll freak out, and another episode will befall me….I’m just crazy.
Finally junior year ended and a CT scan showed my left adrenal gland was larger than the right. My nephrologist said that this was the best bet, so we scheduled the surgery and July (a year to the date of being diagnosed) I went in for my first operation. Woke up to pain, lots of pain, and still had high blood pressure, and rapid heart rate. They put me back on meds, and five days later I was out of the hospital with one less adrenal gland, and an extra prescription. The pathology report came back with no pheo.
Senior year was much the same, but by then I had become a pro at handling make up work, tests, and sacrificing most of my free time to catching up. My boyfriend of over two years split on me by asking another girl out during one of my hospital stays for a blood transfusion. As a high school kid, and one already in an emotional crisis, I hit rock bottom. I stopped eating, I stopped working at school … I turned into a pale zombie that just went through the motions of the day. I stayed that way for about three weeks and my parents forced me to a counselor, which triggered a rage episode. My doctors were slowly giving up on me. I still went in every week for blood level checks, but after the third endoscopy they said to wait 3 months for any more testing. Because of this, it wasn’t until the end of my senior year that my fourth endoscopy happened and that was when they turned the scope upwards on the way out. There was a giant ulcer bleeding into my stomach and a follow up CT scan showed a 2 inch by 2 inch mass on the upper part of my stomach right next to the esophagus.
I still trusted my nephrologist, and so when he said this had to be the pheo. I went in blindly with hope. We waited until senior year was done between high school and college to have the surgery. I didn’t know then that Pheos were so rare that my doctor had no experience other than reading a quick paragraph about it back in med school. So when I woke up from my second surgery with the tumor out along with part of my stomach –including the upper flap that holds back acid reflux, I was let down again to see high blood pressures and heart rates. I will say I recovered from this surgery faster. I knew what to expect on the pain factor and there wasn’t as much fear as I had with the first one.
Back on the meds, the follow up appointment with my nephrologist came. It was my last meeting with him as he was moving to Syracuse NY to be head of the All Children’s Nephrology department there. He sat down, and after two years of seeing this man every week, we had gotten used to one another, so he knew how to talk to me a bit better. He said, “Well, as you can tell it wasn’t a pheo. It’s something we call a GIST tumor. You probably had it since you were born. They grow really slowly; most of the time so slowly that you won’t have to worry about another one.” My parents asked if the pheo caused this. He shrugged, it could be. But that’s so extremely rare that he doubted it.
“The good news,” he said, “is you aren’t losing blood anymore. You will be able to live a normal life on blood pressure medications until some new scan or something comes along … good luck in college”
That was how I ended my All Children’s chapter of my life.
College life was easy. I was still dealing with mood swings, but by then I knew how to handle each emotional episode. I knew what foods triggered me (coffee, chocolate, ice cream, pickles, brownies, alcohol, cheese, and some pasta.) I also tired easily, and if I ate too much I would throw it all up due to the partial stomach removal. But other than that, I was good to go. I moved into a co-ed apartment with my boyfriend of three months. We had separate rooms, and were to split it with two other people, but they never moved in. So it was like being a married couple at age 18 in a huge apartment. We had a few kinks in the road adjusting to living together, but considering that I had a pheo and how hard they are on even the most solid relationships, I think we did pretty well keeping the arguments down. Having him nearby helped me greatly. He was my solid rock that I could count on, and no matter how crazy I got sometimes, he understood and took it all in stride. (I’m a very lucky girl.)
We moved to Minnesota, my birthplace, a few years later and we got married. Life was going well. Scans were still showing nothing, and I had resigned that I wasn’t going to get better. I was still on all the blood pressure medications, but I was able to work part time without feeling too tired. We bought a house and moved in, a year later I found out I was pregnant.
We had caught it really early. You see I was used to anywhere between a 21-28 day cycles. I never went beyond 28. So when I hit 29 days I went to my doctor and got tested. I was 4 weeks along, and was told to contact a closer OBGYN. I went to the hospital that was across the street from my home and tried there, but it was a small community hospital and the OBGYN took one look at my history and said, “You know I don’t ever say this because it is the mother’s choice, but I would never look down on you for aborting now.” I shook my head no, because in my mind I wasn’t going to get any better, this was just my way of life. He was very kind and didn’t judge me, but let me know his hospital just wasn’t equipped for my case. He recommended another OBGYN clinic and an endocrinologist. (I had never been to one of those before so I was a little skeptical about it.)
Well I had my appointment with the OBGYNs and they were all for getting me through the pregnancy. They told me how well their hospital took care of premature babies and that I was in the right place for the care of my baby. I then went to the endocrinologist thinking that I would be able to have the baby without too much worry. The endo was a wonderful man and sat down listened to my entire ordeal with All Children’s, and then he shook his head. He said he wanted me to do another 24-hour urine collection, I said,
“No problem! I bet I can pee in a cup as easily as a boy these days. After all, I’ve had years of practice!” He laughed at that, this was my first doctor that could take a joke by the way. But then he turned serious, and stated, “I’m pretty certain you do not just have a pheochromocytoma …”
“Huh? Excuse me?” I gasped.
“You have something more complex. It’s called Carney Triad. The GIST tumor and the pheo mix are just two of the three tumors you’ll likely get within your life …”
Ok, I’m nearly 25 at this point, and I’ve been used to the bombs doctors seemed to like to throw at me, but even this one took my breath away as I was thinking, great I’m going to deal with another tumor now too?!
“I’m going to call an old friend of mine at the Mayo, his name is Doctor Young …” he continued, and I felt my heart skip a beat. I knew the name … anyone with pheo who did any type of research into it would run across his name rather quickly. The pheo forum I was part of talked of his expertise often. “We’ll get you in to see him next week.”
Next week?! The big-wig of pheo-ville would see me next week?!!! I was elated. I was excited, and for the first time in years I had hope of becoming normal again!
The following week I took that two hour road trip south to the Mayo and was awed by the massive size of the place. The organized zig-zagged lines reminded me of people waiting in ride lines at Disney World, only these people were waiting for blood tests, medicine, or scans. My first meeting with Doctor Young was an eye opener. Everything I had learned about pheos and GISTs came to light. Everything about Carney Triad and how rare it was explained, and that I was the only pregnant Carney Triad female with an active pheo in me … the only one … that number made me sigh out, “You’d think I’d be able to win the lottery with such odds as that!”
“You did win the lottery, just the bad sort of lottery,” was his reply, and he went on to say, “Because you are pregnant we can’t give you an MIBG scan now, but we will do an MRI without contrast, and ultrasounds while we can. The danger of being pregnant with a pheo is if the fetus kicks or presses into the tumor sending you into shock and you suffering a stroke or heart attack.” So we set everything up, and I spent a week there running test after test. I had EKGs, heart echocardiograms, ultrasounds, blood tests, urine tests, MRI’s and the like. Everything came back clear. Yep that was me, the healthiest unhealthy person alive.
I went back home feeling bad that I had no new answers, but I did get more chances to look up Carney Triad. What I learned scared me. GIST was actually considered a cancer. It’s something that wouldn’t go away. Dr. Young had mentioned that we’d have to keep our eyes on my blood levels because being pregnant would possibly make tumors grow more due to all the growth hormones needed to help the baby. So I began to worry … and three weeks later I got the worst morning sickness ever.
It wasn’t just morning. It was morning, noon, and night … with maybe two hours in between where I wasn’t so sick. I went to my OBGYN again to get my second ultrasound of the baby. By that time, I had lost 20 pounds and was back down to 82 pounds. This OBGYN place had multiple doctors, and they all shared patients so I would have which ever doctor was in that day. It sucked because I would have to explain Carney Triad every time I went in (once every two weeks), but by the time I was done there I had taught at least 7 different OBGYN’s about my rare disease. Getting back to the story, this new doctor that I hadn’t seen before waltzed into my room right after I had found out about how much weight I lost, and didn’t even introduce herself. She just shouted, “Did you know you have a 75% chance of dying, and only a 50% chance of the baby staying alive?! Why didn’t you take care of the pheo before you became pregnant!?”
See how the bombshells kept coming? But this one lady made me mad. You don’t talk to a pheo patient that way and not get some sort of angry response back. So I snapped and asked her what she thought I did for those eight years of having it, baked cookies? It’s not like I wanted a pheo it’s just my doctors never could find it!
Needless to say as soon as I went back to Dr. Young for a medication adjustment because my blood pressures were steadily climbing, I asked him to find me an OBGYN that could handle my case without shouting my horrible statistics at me. He introduced me to a colleague and from then on I made my trip to the Mayo twice a month.
To sum up what it was like to live with pregnancy and a pheo, I wouldn’t wish it on anyone in the world. There were definitely times where I felt like I was dying. I had maxed out on four blood pressure medications. I was wheelchair bound. I had extreme joint pains. I couldn’t focus. I cried a ton. I was always sick to my stomach, and I remember just staring at my clock for hours on end thinking, if I could just make it another minute.
The doctors were very honest with me when saying they didn’t know what they drugs would do to the baby. They thought there was a chance for growth retardation and mental development issues. They just didn’t know. At eight months, my body was on the verge of shutting down. I arrived at the hospital the day after Christmas, and they performed an amniocentesis to check for lung maturity. The next day I got the okay that my baby was ready to be taken out.
Surgery number three went by in a blur. It was done and I woke up asking first, “Did my baby make it?”
“What is it?” (we had kept the sex of the baby a surprise the entire time)
“Is he normal?” my heart stopped as I waited the fraction of a second it took to hear the answer.
“He’s perfect, absolutely perfect, look at the picture …”
They had taken my baby off to the NICU right away while I was waking up from the surgery, so I didn’t get the chance to see him … but the picture was enough. I looked at my husband and said,
“Worth it.” and passed out.
It was worth it, worth every second of pain and sickness I had gone through. Worth all the pills I took that made me weak and sick, worth all the worry. I had a perfect baby boy, and it made those eight months of torture seem like mere seconds. He was my miracle baby, and always will be.
I recovered faster than my OBGYN ever dreamed of. Two days. He expected I’d be recovering for a week at least. It took eight days for my son to be ready to go home, and then home we went. I felt normal again, well normal for me. I was still on blood pressure medication, but not nearly what I had been on before, and man I could move again. I could walk!!! It was just a happy time.
Two months later, after I healed from the c-section I was to go in for an MIBG scan, but nurse and insurance conflicts screwed all that up and it wasn’t until May that I got to go in for the scan. This was it, I thought, the moment of truth. Dr. Young said if this didn’t find it he had one more scan he could do…he bet me a dinner that this would find it though, and I took him up on that offer. (After all, I had 3 previous MIBG scans all came back clear, I figured the odds were in my favor!)
The next day I sat in his office holding my son and we looked at the results. Dr. Young turned to me and said,
“We found it.”
There goes a free dinner, I thought.
“The good news is it’s not on the remaining adrenal gland…But it is on your heart.”
Ah, but the beauty of being a target for such shocking news for all those years was I was used to it.
“Ok, so how scared should I be?” I asked, because at this point I just hadn’t wrapped my head around the news.
“Well, you’d be our 14th paraganglioma on the heart here. It’s not a normal spot, it’s a harder operation, and it does have risks … but we have the best heart surgeon in the world here. You’ll be in good hands.”
Man, Dr. Young truly is an expert on how to talk to pheo people. He knows that reassurance is the number one thing that needs to be hammered home. It cuts the worry in half.
We scheduled the surgery two months down the road … July. Perfect circle, I liked that. Before I left the Mayo, I met with other endos and surgeons that had heard of my case and wanted to see me. That was odd for me, because here was a hospital used to seeing strange and rare things, and they were excited over me…it hit home (again) on how it was more than just rare…it was really really rare. (Honestly, I am growing tired of the word rare, as that is how everything about me is labeled now. GIST is rare in young people, pheo on the heart is rare, Pheo is rare, pheo in young people is rare, Carney Triad is rare….you get the point.)
The months leading to the surgery were painfully slow. I was a new mom facing open heart surgery, and my mind just didn’t want to stay positive. I was filled with too many “what if” thoughts. With each passing week I got steadily worse, until I had the wonderful chance of meeting another cardiac-pheo survivor. See, Laura Becktel (one of the four founders of the Troopers) and I knew each other from the support forums as we were both pregnant at the same time and had pheos. She knew Amy Pitzer’s (another founding member of the Troopers) survival of cardiac-pheo and told her my story. Amy contacted me and said she was taking a trip to the Mayo for a checkup and that her and her husband wouldn’t mind driving two hours out of their way to come and meet me. I was excited, this was the first pheo person I would get the chance to meet in real life, and to have it be someone who had gone through the same thing was the life-line I needed. Meeting Amy and hearing her story helped me so much! She even had the same surgeon, Dr. Schaff, which I was going to have. With her story, I was able to make it to the surgery date without needing a straitjacket, or anxiety medications.
Preparing for the surgery was intense. My body hated phenoxybenzamine, the main drug used to block the adrenaline before/during surgery. So Dr. Young kept me on my normal blockers and added a pill called Demser into the mix. This expensive drug ($300 for 44 pills after $200 was paid for by insurance) was supposed stop all communication from the brain to the glands to stop production of adrenaline. I was warned it would make me extremely tired, that I wouldn’t be able to walk far and that I would fall asleep mid-sentence. I surprised him by walking in on my own power the day before the operation, and staying awake throughout the whole appointment. I did pass out as soon as I reached the hotel room, but it showed us how much this tumor was pumping into me even with the drugs to block it.
The morning of surgery and thereafter went by in a haze of a drug-induced state. The Demser hit hard that morning and I had to be woken up several times by the nurses who were prepping me in order to ask questions. Surgery went very smoothly. It was 4 hours from start to finish, 35 minutes on bypass (where they stop the heart and machines circulated the blood for me.) When I woke up, I had two drainage tubes leading from my lungs to a machine that kept my lungs clear. But for the first time in nine years, my blood pressure was low!
I was told that the tumor had started to eat its way into my pulmonary artery and so a circle, about the size of a quarter, was cut from my pericardium and used to patch up the pulmonary artery. The surgeon said it was a routine procedure that they perform with congenital defects, and that there should be no long term worries or damage.
The next day I was still off my medications, although they gave me a real low dose of one of my blockers to keep my heart relaxed so it could heal. Pathology came back that it was positive for pheo, and I rejoiced. The pain of the surgery was far less than any of the other surgeries I had been through. I spent two nights in ICU (the second night only because there were no beds available for me on the normal floor.) By the fourth day, I was allowed to go home. It shocked nurses and doctors alike on how quick the recovery went. I was feeling fantastic! The bone pain from the sternum being cut open was nothing compared to what I had been living with.
It didn’t take long for me to reflect then on how much the pheo ruled my life before. I had lived in so much fear for so long that it had been my normal. I went home a different person, a stronger person … a person no longer afraid to live. The fog had been wiped away from the window and I could see clearly the life I wanted to live. I could make phone calls. I could walk around stores without issues. I could take showers without getting dizzy. I could make my own decisions.
My parents were unable to grasp that I had become a new person after the operation. They had been so used to micro-managing my life, that they didn’t know how else to treat me. I went into heart surgery their little girl. I came home an adult woman. That was the only thing my doctors had not prepared me for. There was a giant emotional shift, and no one was ready for it.
Here I am today, pheo free for two years now, and enjoying every moment of it. Life is still not easy; the economical hits we’ve taken have made things difficult. But I’m no longer afraid to face those difficulties. My son is still my perfect little miracle. My husband is still my rock, and I know I’m in this for life. Carney Triad will always be there and the chances of another pheo returning are high. I need more scans done on my stomach to make sure GIST has not come back or spread too. But those will come when we can afford it.
I’d like to say I’m 100% healthy, but I know I won’t ever be. I’ll always get worn out faster, and sick easier. I’ll always be missing part of my stomach and an adrenal gland. The dull pain I have when I move my chest wrong will always be there to remind me I can’t do everything, and I’ll always bare the battle wounds that scar my body.
I can live with those things. I wouldn’t have it any other way. A lot of bad has happened because of Carney Triad, but so has a lot of good…and I’m a glass-half-full kind of girl.
Update since the posting of this story:
My rollercoaster ride of Carney Triad continues. In 2010 I found out I was pregnant, but miscarried 8 weeks later. Still feeling ill a few months after that, I went in for scans thinking that I had GIST recurrence. The scans showed that my stomach was fine but two tumors had formed, one in my left lung and one on my remaining adrenal gland.
Biochemical testing showed negative for pheo, and additional scans showed the lung tumor had calcification around the edges, a trait that is much like the pulmonary chondromas that Carney Triad patients deal with. This makes me one of 34 people in the world to experience all three of Carney Triad tumors.
We waited on surgery, and just monitored the growth.
Sept. 2013, I went to the NIH for scans and the lung tumor has doubled in size as well as a new spot that showed uptake for paraganglioma near my L2 area. I also had uptake on my heart where the past paraganglioma was removed. Three other spots (one on my stomach and two in my liver) also showed up but did not show uptake for pheo/para. They believe those could be GIST, however those spots are so small they did not appear on the follow up MRI scans.
We decided on the wait and see approach as the tumors are small right now. I’m due to go back soon for follow up scans to see how fast the new tumors are growing, and from there we’ll figure out a plan.
Life outside of hospitals is as exciting as ever. I’m active in patient advocacy, working with multiple organizations and hospitals to bring awareness, while helping anyone that wants to learn.
My husband is still amazing and I fall in love with him more each day. My son is now in Kindergarten and healthy as can be. (Oh and the worry about mental growth issues due to my medications I took while pregnant? I guess I didn’t have to worry too much. His teacher is petitioning the school board for him to advance into 2nd grade math and language arts.) Life is good, even with the trials that cancer has brought to me.
I’ve met amazing people and have been inspired by other patient stories. If I learned anything while working with the Troopers it’s, together we will get through this…no one has to go it alone.