In Her Own Words – Madelyn’s Story

In her own words, 10-year-old Madelyn Stepski, a Connecticut Children’s patient, shares her experience about our team of physicians and staff in the Center for Urology & Nephrology.

Tri-Athelon 2014The summer after her surgery, Maddy placed 3rd in a Tri-Athlon!

When my mom first walked into the waiting room with Dr. Ferrar and told me that I would definitely have to have my left kidney removed, I was disappointed because I was hoping that wouldn’t have to be done. But I know that doctors know best, and after meeting my surgeon Dr. Kim, I knew I could trust them that this was the right thing for me.

The day of the surgery, I felt awesome because I got to ride on a motorcycle into the surgery room and everyone there was smiling and encouraging. Afterwards, I was surprised the incisions were so small and even though I was sore, I was free of the nephrostomy bag!

IMG_20140213_105431Maddy just moments before driving into surgery on a motorcycle!

IMG_20131217_120640Valentine the Clown stops in for some face painting!

Today, I can still be the active kid that I am and play the sports that I love most as long as I have extra hydration. It was very hard and sad to me that there were other kids in the hospital that had much worse health problems than me, like cancer, and who didn’t get to go home in time for Christmas.

Getting to be home with my family was more special than it had ever felt before because of all that had happened. My mom was a supermom through it all, because she took care of me and drove me to Hartford and helped me be brave and changed my gross bandages. Now I have so much more understanding that so many kids struggle and have to be strong and go through pain, and I wish I could help them all.

I would tell them, that on the other side of the pain, your family is waiting for you. And they all know that you can do it and are doing your best. It is so important for families to cherish their time together. Something can come along in an instant; you never know. As I keep growing, I am thankful more and more everyday, every minute that I am here with everyone that I love.

IMG_20140220_104124Time to go home..but not before leaving a special message for Dr. Kim!

Gender and the “perfect” body

by Priya Phulwani, MD

I am a pediatric endocrinologist with an interest in teens in transition, polycystic ovarian syndrome and gender dysphoria. Not surprisingly I was asked, “What do you make of this whole Caitlyn Jenner thing?” This made me reflect on my recent patients.

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An eighteen year who has not had a period in 6 months because she has severely restricted her calories to look good for college this fall.

A sixteen year old who is anxious about her facial and body hair which she constantly struggles to remove or conceal.

A seventeen year old who was heartbroken to hear from me that growth hormone was not an option at this age to make her get taller.

And the most striking was my transgender young woman – severely depressed that she is too tall and despite estrogen hormone therapy looks too masculine.

It seems to me that those of us, who live in society as females, sure are under a great deal of pressure to achieve a certain physical appearance.

The recent news about Caitlyn Jenner has made headlines, but most of the comments have focused on her appearance. Yes, I do think she looks great, but wouldn’t it be wonderful if most of us focused on the incredible bravery she has displayed in being true to her authentic self even at this stage in life? In the words of actress Laverne Cox, “Yes, Caitlyn looks amazing and is beautiful but what I think is most beautiful about her is her heart and soul, the ways she has allowed the world into her vulnerabilities. The love and devotion she has for her family and that they have for her. Her courage to move past denial into her truth so publicly. These things are beyond beautiful to me.”

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I currently have about 80 teens that I provide medical care to for Gender Dysphoria and am always amazed by their stories – their journeys with their families. The most important thing anyone can give them is acceptance – it fulfills the basic human need for respect and dignity. A simple touching letter from a school principal asking for acceptance of a transgender child can go a long way to provide a safe environment. (Click here to read). It is also important to diagnose gender dysphoria early for better mental health outcomes, but of course help at any time is appreciated. Puberty can be a time of great depression and anxiety for any teenager with body image issues. Add to that an undesired puberty, where your body seems to be betraying your mind as it advances to an undesired outcome, and you have a recipe for a high rate of clinical depression. Multiple studies show that using to block further progression of an undesired puberty as early as the first stage of puberty, and using “cross” hormones at age 16 onward to obtain the desired puberty, can reduce the rate of suicide attempts in the adolescent gender dysphoria population from 8-20% to less than 2%.

In Caitlyn’s own words for the interview with Vanity Fair, “I’m not doing this to be interesting. I’m doing this to live.”

For more information on Connecticut Children’s Gender Dysphoria program click here.

Coming Home: Monique’s Story

By Moniqe Caouette, Connecticut Children’s patient and brain tumor survivor

It was October 2011 and I was away at college. I was in my junior year studying Psychology at the University of Saint Joseph in West Hartford. In my free time, I was playing lacrosse for the University and trying to be a normal 22-year-old.

11330047_10205497698176848_7935370911867855945_nIn the same month, I woke up one morning with a migraine. On my way to class I called my Mom, as I would most days, and told her about my really bad headache. It was just the first day and I didn’t think anything of it. As days passed, the migraine stayed and new symptoms came with it. I was experiencing blurred vision but also numbness in the right side of my face and body. It was almost 10 days with still no relief. Fed up with how I was feeling, I called my Mom once again that morning, asking to go to the doctor.

Sitting in the office of Bristol Pediatrics I was told there was nothing that was wrong. On the way home the doctor called and ordered an MRI scan just in case. Shortly after, I was at Bristol Hospital being put into an MRI machine. While waiting to leave I couldn’t help but wonder what they saw on that scan and what they were thinking.

A couple days later I was told to go back to Bristol Pediatrics but this time I was brought into the office. Who knew….an office…. this couldn’t be good. I sat there as the doctor said the words that will forever haunt me, “You have a brain tumor.” Time stood still, “What does this mean? Am I going to be ok?” I thought to myself.

brain scanIn the office I was okay. I didn’t cry. I was emotionless. I was told I was expected at Connecticut Children’s Medical Center within the next hour to meet my neurosurgeon, Dr. Kanev. This was all happening so fast.

Walking in the parking lot after hearing this news, I broke down. I held my Mom and just cried right there in the middle of the parking lot. I remember sitting in the car texting my boyfriend Nick on the way to Connecticut Children’s, “I have a brain tumor” I wrote. Those words didn’t seem real to me. And who knew that those 5 words would be a part of my life from then on.

The ride to the Medical Center felt like an eternity. Walking in, I felt out of place. This was a children’s hospital and I’m 22 years old…why am I here?

Meeting with Doctor Kanev was a relief. He was an older man with a beard and white hair, almost like Santa Claus. He had a calm demeanor to him. I knew this was a man I could trust with my life. The doctor’s visit covered everything…where the tumor was located, what the MRI looked like, the options I had for surgery and how soon it needed to be removed.

For the next couple weeks my life was on pause. I was going to be having brain surgery for a tumor the size of a golf ball in my right frontal lobe. The scariest part was that I wouldn’t know until after surgery if it was cancerous or not. After weighing my options I decided I would rather have the incision in my head rather than in my eyebrow. Don’t ask me why or how I came up with that decision…it just felt right.

As surgery came closer and my diagnosis spread, people kept asking me how I was, and so I would respond with positive things to shed light on the situation. In front of everyone I was positive and cheerful. I wouldn’t show sadness or nervousness. I knew that I had to stay strong for my family and myself. At night I could hear my parents crying. Little did everyone know that behind closed doors I was not okay. I would sit for hours and cry as well. But I had to remain strong for everyone else. I didn’t want to show my fear. I would ask over and over “Why is this happening to me?”

The day of surgery I was surrounded by people I loved. My family even flew in from the South to watch over me. I was sitting, getting prepped for surgery with my Mom and Dad. I wasn’t sure how I was supposed to feel. I don’t remember much but I remember my Dad and I were laughing, making silly jokes to stay positive.

When heading into surgery I remember walking into the room, laying on the table and seeing Dr. Kanev. “Here goes nothing” I thought as I was put under anesthesia.

after surguryMy surgery lasted 9 hours. In all of that time my family was updated frequently by the doctor. I can’t even imagine how they were feeling as this was all out of their control. When the surgery was done I was brought into the ICU. The next couple of days were a blur. I was in a lot of pain and was very swollen. I had over 100 stitches on the inside and 100 stitches on the outside of my head. I received 3 plates in my forehead with various screws and had a hole the size of a golf ball in my brain.

From this day on I was able to say that “I survived a brain tumor”. The healing process had begun. Little did I know that during this healing process at Connecticut Children’s Medical Center we were going to have a blizzard in the middle of October! Over the next week, I began getting used to my new scars, my new appearance and my new life ahead of me.
After being released from the hospital, I headed home to start my new life.

As of today I have been tumor free for almost 4 years. I may struggle with not having a short term memory but I am forever grateful to Dr. Kanev and his amazing staff. In my recovery I have found the Connecticut Brian Tumor Alliance. This foundation has inspired me to raise money and this past May I raised almost $2,000 for the Alliance.

In this new life I hope to be the best survivor I can be. I want to strive to dedicate myself to helping people that may have been or are going through similar situations. I hope that by spreading my story I am able to inspire people around me with my strength and positivity.