UC RELAY FOR LIFE!

Hi Everyone!

Sorry it’s been awhile since I’ve made a post..

The last few months have been pretty hectic, but I’m loving college and 1 point away from qualifying for regionals as a member of the UC Equestrian Team. The best part is that I’ve been cancer free for 8 months now!

The Equestrian Team is participating in the University of Cincinnati Relay for Life (American Cancer Society). The event will take place on campus April 1-2, 6PM to 6AM. Everyone is welcome to join the team at this event, or you can make a donation. You can find all the information you need on my page, and feel free to ask questions.

http://main.acsevents.org/goto/GraceUCET

 

Thank you for you support!!

Grace

 

One Month Since Surgery

Last sunday marked one month since my surgery. Staying active is really helping me recover, so I’ve been walking and going out as much as possible. I started my chemo meds (Nexavar) on Monday and luckily I haven’t had any bad side effects. My medical team isn’t expecting to see any negative side effects until we double the dose. I’m really looking forward to being in Orlando this time next week, which will definately be a test for me. I’m finding that I hate heat and lack stamina when it comes to walking. I’m still struggling with insomnia, I haven’t gotten close to a normal sleep pattern since my surgery. Every day I continue to gain some normalcy in my life, and I’m lucky to have friends who are patient with me when we go out. A big step for me was going to my college orientation last week. I was able to be there the whole day, though I went home with a migrane. I’m excited to start school and get back to dance. -Grace

Diagnosis and Surgery

May 27th, the day before my high school graduation, I started getting a stabbing pain in my right side under my ribcage. The pain was so bad that as soon as my senior awards ceremony was over, I got in the car and cried – and I’m not a crier. I couldn’t find the right words to describe the pain, it was always there but it became a stabbing sensation if i moved quickly, breathed too deep, or laughed too hard. The pain put a damper on my graduation as it made me grumpy the whole day, probably because I didn’t get enough sleep. The pain was horrible if I laid down, so I started sleeping in the chair in my living room. Sleep was very difficult for me because falling asleep was hard, and I barely ever stayed asleep.

By May 30th, I knew this wasn’t normal pain, and it’s been persistant for 4 days now. My mother took me to the TriHealth Priority Care clinic. They had no clue what the pain was they explored options from constipation to pneumonia. I had an x-ray taken and everything was clear, so the doctor became alittle more alarmed. They took a lot of blood and urine samples from me because they were exploring the kidneys, gall bladder, and liver. He was sure it was my gallbladder so we scheduled an ultrasound on my gallbladder and liver.

June 2nd- I went to Western Ridge TriHealth for my ultrasound. I took an hour but they had radiologist read it and get the report to my family doctor fairly quickly. The doctor called while my mother and I were in the car running errands. She told us there was a 9cm mass in my liver. I remember my mom getting upset when she called my dad because the first thing you think when you hear mass is cancer. I was glad that my pain was validated though. So they rushed me to get an MRI the next day, The MRI would tell us whether I had a hard mass in my liver or just a cyst on my liver- which are much more common.

June 3rd- My dad takes me to my MRI at the same place. I had an MRI with contrast dye. The MRI confirmed that there was a tumor the size of a baseball in my liver. So my doctor got me in to see a liver surgeon at Cincinnati Children’s Hospital the next day.

June 4th- We go to see Dr. Jaimie Nathan at Children’s. I did my research on him before we went in- he was educated at Yale and Duke and is a triple board certified surgeon. He is certified by the boards of general surgery, pediatric surgery, and transplant surgery. My parents and my older brother, Alex, came with me to the consult. Dr. Nathan had no clue what he was walking into, we were in the room the first time he saw the MRI. He noticed the tumor took up almost half of my liver and had dark spots in it, which alarmed him. He walked out of the room to make phone calls, and before I knew it he had his whole OR schedule cleared for the next day. I was told that I was his only patient tomorrow because I was to have half my liver and my gallbladder removed. I was soon canceling plans I sold my 3 day pass to the Bunbury music festival and it was heartbreaking to give up my role in Queen City Production’s Shrek the Musical, which was scheduled to open in 2 weeks. 

June 5th- I was leaving my house by 5:30am to make it to the hospital on time. By the time I was in my gown the tiny post-op room, my brother Alex was there with us. He was always around the hospital because he is pretty high up in Children’s protective services. Before I knew it, my other older brother Scott was flying in from San  Francisco to stay with me. I was calm until they rolled me into the operating room, I hated being in there. It was so cold and felt dehumanizing to be laying on a stainless steel table. They gave me laughing gas as they put IVs in both my arms, and soon the room was spinning and I was asleep. The surgery took 13 hours to complete, while I was in the OR I needed 2 blood transfusions. That makes me glad that I’ve been a blood donor since I turned 16, and after I donate Hoxworth always tells me my blood has gone to Children’s to help another kid. 

When I woke up from surgery, I was in the ICU with a tube down my throat. Luckily they took it out that night, but I was kept on oxygen my whole hospital stay because I was having respiratory problems. I remember being in excruciating pain and feeling helpless. I had a button I could push to admisister pain medicine to myself, but I wasn’t given anything for the pain before I woke up. I was so mad at my pain team because it doesn’t take a rocket scientist to know that I’m going to wake up in pain if I have to give myself pain medicine. I do remember my ICU nurse Jamie being the best person on my medical team while I was in the ICU. I was only in the ICU for 2 days and 1 night. I was then moved to the 4th floor, which was the surgery ward. Things got better, very slowly, and I started getting visitors and flowers. My whole room smelt like flowers by the time I left. I never had to sleep alone, at least 1 of my family members was staying the night every night. I thought my brothers, especially Scott, were never going to leave. I spent a total of 8 days in the hospital, and was so grateful to be home. Currently, it’s been 22 days since my surgery. I started sleeping through the night 3 days ago and have been sleeping in a hospital bed in my living room. I got to see Shrek the Musical last night and that’s the longest I’ve been out of the house since. Thank you to everyone for you help and prayers, I am so grateful. 

“Courage is grace under pressure” -Ernest Hemingway

Why Blog?: My Experience with Fibrolamellar Hepatocellular Carcinoma (FHCC)

I’m starting this blog to publicly document my experience with FHCC. I decided to do this because FHCC is a rare cancer with only 200 people diagnosed a year which makes information rare.  When I started my journey, I wanted stories and information about FHCC and all I found were negative experiences or stories of people much older than me. Most people diagnosed with FHCC are teenagers/young adults, like me. I am also frustrated with the lack of data available to my doctors, so my parents and I have signed documents allowing Cincinnati Children’s and any other researchers or institutions access to my personal medical files. Cincinnati Children’s has my tumor as well as blood and other medical waste stored for research purpose.

I will also be put on the chemotherapy drug Nexavar (Sorafenib) in two weeks. All available online reviews of this drug are written by people much older than me. Going into this, I would like to hear the reaction of people my age, unfortunately I’m going in blind. I do know the most common symptom is “hand and foot syndrome” which is a rash that turns to blisters on the palms of your hands and soles of your feet. Other common side affects are fatigue, nausea, or loss of appetite. My oncologist also wants to keep an eye on my labs so they’ll take blood after every cycle (a cycle is 4 weeks) and heart function so I had an ECHO and EKG earlier this month.

Essentially, I’m writing this blog so that someone starting their journey with fibrolamellar finds my journey helpful and positive. Also, my parents and I have been asked for updates everyday, so here are your updates.