Honoring Patients, Researchers in September

September Awareness Month

Everyday at Curing Kids Cancer, we work to fund new treatments for childhood cancer. But in September, we take time to honor both the patients and the researchers at the center of fight for cutting edge treatments. That's because September is National Childhood Cancer Awareness Month.

During September, we'll be featuring the stories of pediatric cancer patients. On this page, you can also find out more about some of the exciting research we are funding through your donations.

Each week, we will feature the story of one amazing child along with highlighting ongoing research to help other kids like them in their fight against cancer.

 

Keaton's Story       Claire's Story       Calli's Story      Week Four - Mandy's Story

 

Mandy's Story - Life With Childhood Leukemia

By Amanda Smith, Director of Development

Many of you know me as the new Director of Development at Curing Kids Cancer, but I am also a childhood cancer survivor. These experiences give me a very unique perspective on the world of childhood cancer. I am now 24 years old, but I was eight years old when I was diagnosed with Acute Lymphocytic Leukemia on November 11, 1997.

Amanda Age Eight
Mandy During Treatment

Though we did not recognize the symptoms at the time for what they were, I started showing signs of being ill around mid-October.  I had been taking gymnastics for a few months, but one night I told my mom I was tired and didn’t want to go. She thought I was just making excuses.  In reality, tired was the only word I knew to describe how I felt.  I didn’t feel “sick,” because “sick” in my eight-year-old mind was when you were throwing up, or sneezing, or coughing, or when your ears hurt.

People at my church started making comments about my pale skin and how I looked sick. My parents explained that I had been sick with a cold for the past couple of weeks. I had a few small bumps and bruises, but nothing that any kid with an active playing routine couldn’t get. I kept eating dinner normally because I wasn’t eating lunch at school, so my parents didn’t notice an appetite change. 

I don’t remember this, but years later a friend of mine told me that one day at school she finally said, “Mandy, you need to eat.”  But I just pushed my tray forward, laid my head on the cafeteria table, and fell asleep during lunch. I started doing that during class too, and my teacher would have to tell me to pick my head up. At first she was frustrated, but after a couple of weeks of this behavior, she started to look at me curiously every time.

On November 11, a Tuesday, she asked me to pick up my head, but I couldn’t do it, so I just stayed there. She had tried to call my parents on Monday, but I begged her not to and said I was fine.  I liked school and wanted to stay. On November 11, she said, “No, I’m calling your mom,” and had me lie on a cot until somebody came to get me.

My mom was working that day, but thankfully my dad was working from his home office and he answered the phone. When he came to get me, he had to carry me to the car and into the doctor’s office. This time, the doctor took one look at me and said, “This is more than a cold, something is very wrong.” I must have changed a lot in the week-and-a-half since I saw him last.

From what I have been told since then, the doctor sent me for a full range of tests, and it came back with a clear message. After talking with the doctors at Egleston Children’s Hospital (now CHOA at Egleston), he came in to tell my dad the news, who then called my mom. The doctor called Egleston again to let them know we were on the way.

Most of what I remember of that whole week has been told to me since then. When I got to the hospital, my hemoglobin count was 4; it is supposed to be no lower than 12. It was determined that I had Acute Lymphoblastic Leukemia (ALL), B Cell, Medium Risk. Most people don’t realize that there are 12 types of childhood cancers, one of which is leukemia, and the 12 types have subtypes and sub-subtypes. This makes treatment plans almost completely unique to each patient, though there are many similarities between those of the same “type.” 

ALL leukemia has the longest treatment plan of any childhood cancer (two-and-a-half years for girls; three years for boys), but it is also supposed to be one of the most curable: 75% was the survival rate for my type of cancer at that time. That wasn’t a whole lot of comfort to my parents, especially when you consider all of the possible and probable side effects (short-term, long-term and for life). Boys with leukemia have a lower survival rate, and other types of leukemia also have much lower rates.

Though I had always been an A+ student, always one of the top two in my classes, I started to struggle with school when my treatment started.  In addition to missing a lot of instruction, I was on a strong steroid called Prednisone that made me so emotional that more than once I broke down in hysterical tears during a test or quiz.  In 4th grade, I went home crying almost every day.

One drug I was on was very difficult to take correctly.  You had to take it at a specific time, and exactly 45 minutes later I had to take a “rescue” drug that flushed it all out of my system before it could do too much damage. One time I accidentally took a second pill of the drug instead of the rescue drug.  Thankfully my mom realized almost immediately what I had done and called the hospital who gave us specific instructions on how to handle it.  I took an extra “rescue” pill, and I couldn’t help but imagine a little superhero in a cape coming to the rescue. This is why my mom always came to the school to give me all of my medicines.  Nobody else can be trusted with that kind of responsibility. This is the world of the traditional chemotherapy, and children often have no other option. Fifteen years ago there was no other option, and even now there aren’t many more.

When I was finally off treatment, I thought I was done. Nobody had told me about all of the potential long-term side effects. Though I stayed in gifted classes all through school and graduated with honors from high school, college and graduate school, in middle school it started to become apparent that some of the drugs from chemotherapy had caused me to develop ADHD (very common in leukemia patients).  Though I didn’t exhibit much of the hyperactivity part, the attention deficit portion started to significantly affect my schoolwork, organization and ability to hear and carry out instructions with multiple steps.  I have now learned necessary coping skills to manage these effects, but I still struggle with it to this day. 

Amanda at Graduation
Mandy at Graduation

Over the years I have seen other childhood cancer experiences through friends that I met at the hospital and activities for kids with cancer.  I have watched several friends die either directly from their cancer or from side effects of treatments, including secondary cancers. Two were close friends of mine for several years.  They both died while I was in college.  I went to both funerals and went to visit one of them only weeks before he died. These are things you never forget.

I am 24 years old now and am so fortunate to have as few and mild effects as I do. Though I have learned many valuable lessons from my experiences, like the importance of working hard, how to appreciate life, how to treat others and evaluate real priorities, I wouldn’t wish my experiences on anyone. I never realized how fortunate I was until I got older and saw the effects that many of my friends have had from their treatments and cancers. It simply isn’t acceptable for kids to have no better treatment options than ones that leave them with life-changing, dangerous and sometimes deadly side effects.

I can tell you from personal experience how much need there is for the development of the cutting-edge drugs that Curing Kids Cancer funds. Most children have no other option than to take treatments that were originally developed for adults, but children’s bodies just can’t accept those treatments as well as adults. In addition to my own observations, the statistics prove that these drugs are needed. No survival rate is high enough unless it is 100%, because no child should have to die due to a lack of funding for the drugs they need.  As it is, even among children who survive, most of them have long-term dangerous side effects.

Be a part of changing the world of childhood cancer today. Help us turn this killer disease into a curable one for every child. With the help of generous people like you, it is possible in our lifetime.

 

Aflac Cancer Center at Children’s Healthcare Of Atlanta

The Aflac Cancer Center at Children’s Healthcare Of Atlanta received a total of $175,000 in funding from Curing Kids cancer for 2012.  That included $15,000 for the Call to Fund, which provided the following equipment for the Cancer Center:

  • Computerized alarm system for freezers in the Cellular Therapy Lab ($4,500)  This alarm system monitors the functioning of the freezer to help ensure that marrow processing samples and drugs are maintained at the proper temperature, which is critical to patient safety.
  • Laptop for the Innovative Therapy team leader who works cross-campus frequently and would benefit from having a laptop ($2,500)
  • Second monitor for all Clinical Research Coordinators and Clinical Research Nurses (10 monitors at $300 each, $3,000) This will help with entering data into electronic forms while also reviewing charts in EPIC, hence the benefit of having two screens.

 

We are endowing the Clinical Research Office (CRO) at the Aflac Cancer Center at Children’s Healthcare of Atlanta, where our son, Killian was treated. Our current total for our endowment of the Curing Kids Cancer Clinical Research Office is at $1,025,000.  

It is a $1.5 million endowment and we have $475,000 left to fulfill.  We plan to complete our endowment by the end of 2013!

The Aflac Cancer Center at Children’s Healthcare of Atlanta is ranked 3rd in the country for pediatric cancer treatment facilities and children come from all over the USA for treatment there.  The CRO, which we are endowing, is crucial to giving children treated there access to the most cutting- edge drugs available.  That is why we are providing the endowment.  When our son was being treated in 1999 there were no innovative therapies available at the Aflac Cancer Center. According to Dr. John Bergsagel, who was Killian’s doctor at the Aflac Cancer Center at CHOA, the funding received from Curing Kids Cancer for the Clinical Research Office has enabled them to increase the number of innovative treatments to well over 100, which are currently available.  Without this vital funding these important clinical trials for new treatments would not be available.