2018 Honored Heroes

These young survivors and their families have pledged to help the candidates and campaign in a variety of ways, most importantly, speaking at and attending events and motivating the candidates.

Leukemia is the number two cancer killer of children under the age of 20; therefore kids are helping kids battle these devastating cancers.

Meet Ady.

Adyson (Ady for short) is an energetic and outgoing five year old. She lives with her mom, dad, and big brother, Julian.  She has beautiful blonde hair and loves kittens, dance, and school.  She cares deeply for her friends in kindergarten and has a huge loving spirit.  If you saw her today, you would have no clue what she has faced in her short five years of life.  

Adyson has a port in her chest for the chemo that she has received, and she just finished a two and a half year treatment plan for high risk pre-b acute lymphoblastic leukemia.  The vivid memory of May 17, 2014 is forever etched in our brains.  It was on that day that we heard some of the hardest words that no parent wants to hear about their child, “Ady has cancer”.  It was the day that “normal life,” as we knew it, stopped.  She was two years old and was happy, outgoing, and acting like every other two year old, but the bruises on her shins brought us to her pediatrician’s office - who quickly sent us to the Duke Children’s ER.  Blood work in the ER quickly confirmed what the doctors were already suspecting; they told us that Ady had leukemia, and she would need a port to start chemo almost immediately. Two days later, Ady had a port inserted in her chest, her first lumbar puncture, a bone marrow aspiration and began chemo along with blood and platelet transfusions. Absolutely everything was a blur; every doctor that we met, every piece of info that they gave us on this disease, every word of the next steps and prognosis, just a blur. It was all just a bad dream that was now our reality. That Friday, Ady celebrated her third birthday in the hospital. 

After 28 days of treatment we received the best words, “Ady was in remission”. While we were thrilled by these words, we also knew that treatment was not even close to done.  The treatment plan consisted of several chemo cocktails and multiple phases.  The next nine months were some of the hardest to walk through. Ady endured many hospital stays. The chemo had many side effects, and her hair fell out twice. She fought oral meds, and she had multiple feeding tubes to help her with weight gain. We lived in constant fear of fevers and late night trips to the ER. In addition, the last year and a half has been filled with finger pricks, lumbar punctures, weight struggles, oral chemo, additional hospital stays, and blood checks.  

On February 23, 2015, Ady entered the maintenance phase of treatment, and we slowly began reintroducing fun things, normal things, back to our lives. We returned to church and started inviting people into our home again, to regain some of our once social lifestyle. September 23, 2016 is another day engrained in our brains.  This is the day Ady took her last dose of chemo. Ady will be closely monitored for the next 5 years and have regular blood checks and doctor visits.

Ady is now in school, loving church, taking dance, and looking forward to all the fun things five year olds do. She understands that she has had cancer, and when we mention others having cancer she often says “I have had cancer too”.  The last two years have gone by so quickly in some respects, yet so slow in others.  Leukemia not only affected Adyson, but our entire family and network of friends.  We have all had to endure the effects of leukemia, yet our precious Ady hasn't let it get her down.  She is a fighter and remains an inspiration for so many people. Ady has now had three months of great doctor visits, and she looks forward to the port being removed in 2017!  

Meet Edward.

It was a busy summer week.  I am in a year-round school so in late June we are taking our end of grade testing and exams for classes.  One of the churches I go to had a Vacation Bible School that I went to, I had just finished tryouts with my dance group, and I above all enjoyed hanging out with my friends.  There was a school award ceremony where I got the citizenship award for my entire grade level. On the Friday night before the last week of school I was having a hard time sleeping.  Whenever I laid on my left side there was a pain under my arm.  When I looked there was a large lump there.

When I told my parents, they looked concerned, but explained it was probably a cyst or enlarged lymph nodes due to an infection, but my mom wanted to get it checked out.  Since it was a Friday night we went to the emergency room and they took blood, X-rays and did an ultrasound.  They let us know that a bunch of lymph nodes were enlarged but they could not give us a diagnosis, they needed to wait on the blood work and wanted us to get a biopsy.  We met with the surgeon the next week and scheduled the biopsy for Thursday, the next to the last day of school.  I was really nervous about the surgery but my parents assured me we needed to do it to figure out exactly what was going on.  The surgeon removed many of the enlarged lymph nodes and left me with a drain under my armpit.  It was a little creepy having fluids dripping out of me, my parents had to change out the collection vile and I couldn’t take a shower.  They called my parents the next day, they told me I had Hodgkin’s Lymphoma and that I had an appointment at UNC the next week, but I didn’t really know what that meant.

On Sunday night my parents took me out to a cool place for dessert and explained that I had cancer and that it is going to be a long road to recovery, not a short simple solution.  We met Dr. Blatt (our doctor through the whole process) on Monday July 3rd.  She met us super early in the morning and with the holiday the next day the clinic was pretty empty.  She talked us through the next steps including getting baseline testing and my port in later that week, not what I expected to be doing on my one week of summer vacation.  They had to re-do some of the biopsy stuff too, which combined with a lot of the doctors being off for the 4th of July pushed me starting my first chemo session off until the next week, which would have also been the 1st week of 7th grade for me.

We came to the hospital the next Monday to get admitted for my first round of chemo.  Since there wasn’t a bed available we waited around all day and finally got into a room late that night.  Since it was so late they delayed the start of the 1st round to the next day.  I didn’t know what to expect with chemo, I knew the drugs were powerful and they were what I needed to fight the cancer but being admitted to the hospital, with the nurses in the extra thick blue aprons and purple gloves left me very uneasy, even with the drugs they give to help calm me down.  When I received the third drug of my chemo treatment, Etoposide, I had a severe reaction.  I remember my breath becoming spicy as soon as they started the drug followed by me not being able to breath.  My parents say I also turned bright red and started sweating a lot.  They immediately stopped the drug and gave me Benadryl which stopped the reaction, but those few minutes were the most terrifying of my life.  They gave me a short break and then finished the other chemo drugs. 

The alternate drug for Etoposide was not available at the time I had my reaction, so they went the first 3 cycles without it.  The only good part about the reaction was that Etoposide was the only drug given on the 3rd day of my treatment, so we got to leave the hospital a day early for the first round and I didn’t have to go to the clinic those days in cycles 2 and 3.  Unfortunately, when it became available again for cycle 4 I had to be admitted again, this time into the pediatric intensive care unit.  They monitored me closely as I received the replacement drug and I did not react this time.

My parents have tried to give me lots of stuff to look forward to throughout this process.  We had small parties with a few friends at the end of each cycle, we are planning to do a haunted house at Halloween and I even got a henna tattoo of the Millennium Falcon on my head when I lost all my hair.  I look forward to life getting back to normal; going to school every day, rejoining my dance group, and getting to ride on roller coasters.