My Story

I was seventeen and a senior in High School... one of the few seniors at my school who wasn't infected with senioritis. I loved going to school, and my GPA reflected that. I was even the stat girl for the boy’s varsity basketball team and when we won the CIF championship, I got a ring just like the players!

While at the homecoming game with my sister I ran my hand over my collarbone - and noticed a lump there. I hadn't noticed it before, but something inside me shook. I grabbed my sister and told her that we had to leave, and we went home.

It was there that I told my parents that I had found something on my neck and ten minutes later I was in the emergency room. The Doctor came in, looked at it and said, “You’re seventeen, there is under a .5% chance that this is anything other than an enlarged lymph node; but just in case you should call your primary doctor and request to see a specialist.”

The following Monday, my parents took me to see a specialist, who, like the ER Doctor, was not alarmed, but just to follow protocol, he wanted a needle biopsy. On November 16, 2001, which is also my dad's birthday, the biopsy was performed.

It was by far the most painful thing I have ever gone through. I don’t remember crying out in pain, but rather holding my Dad’s hand, and tears running down my cheeks.

Later that day we got a phone call. It was my doctor. She informed my parents that I had Hodgkin’s Disease. When my parents initially told me, I went numb. I was bombarded with emotions from all angles. The word cancer is a scary word. I wasn't sure how to react or what to say. I was just 17 and scared.

The next step was to go see an Oncologist, Dr. Jerry Finkelstein. He told me that Hodgkin’s was one of the most curable cancers. He then went over protocol (ABVD). I would get 6 months of chemotherapy, no radiation. I would also be on many prescriptive medications and that would do just as much work as the chemo. One of those medications would be steroids, which meant I would gain weight, and have the possible side effect of severe acne.

While I was at the Oncologist’s office I saw many children who were on their second or third year of chemo. These children inspired me; I realized how blessed I was to have to go through only six months of treatment. I immediately took on the attitude of “I have cancer, cancer doesn’t have me” and that became my mantra.

Losing my hair was the most difficult part for me, because it was emotional. I stopped going to school, and the district provided a tutor that would come to my house so I could still get school credit. I finished treatment, and was able to walk with my senior class at graduation.

In late June of 2002, I had a gallium scan done, which confirmed that the treatment had worked, and I was declared cancer free!

That summer of 2002 was great! I went to the same church camp that I had gone to the summer before, only this time I was a speaker. There were close to a thousand high school kids at the camp. My hair was just starting to grow back, so, I was still wearing a wig.

At the end of the week, I spoke in front of them all; I told my peers about the journey that I had finished just months earlier. I took off my wig when I gave my speech. I concluded with “the score is officially Alese 1, Cancer 0.” It was a great week and I felt this was all behind me.

I started my freshman year of college as a pre-nursing major. I had met many nurses over the past year who were incredible. Because of their impact in my life, I wanted to be able to give back to those who were also facing life-threatening illnesses.

During the fourth week of college, I once again found a lump on my neck. My oncologist told me that I was just being dramatic because Hodgkin’s rarely recurs. He told me to continue with school, and I would see him at my next scheduled check up in 3 months.

We didn't feel comfortable waiting so long. We were the ones who weren't sleeping at night, because of the fear of the unknown. My parents called the Oncologist and pushed for a gallium scan. The Oncologist agreed and the scan was performed a few days later.

That afternoon, the phone rang. It was the Oncologist on the other end of the line, saying “I don’t know how this happened, but it appears Alese has had a recurrence. We are going to do a biopsy.”

The biopsy came back positive and since we had already done the standard protocol, my doctor referred us to Dr. Michael Link and Dr. Sarah Donnelson at Stanford University. They are regarded as the two leading Doctors in the country who specialize in treating Hodgkin’sDisease.

Their advice was to treat the disease aggressively and concluded that I should have a stem cell transplant, followed by twelve rounds of radiation. Since it’s so rare for Hodgkin’s to recur, they informed me that I had a 50/50-chance of survival within the first year. This was pretty much our last hope for my health. My medical team, my family and I decided that we would follow the protocol that Stanford had recommended and that I would be treated at UCLA in Westwood.

Treatment began immediately and I under went “conditioning chemotherapy” with a regimen called ICE. This stuff is so potent that it brought a whole new meaning to me of the word sick! After the second round of ice I was scanned and there was no evidence of cancer in my body.

Soon thereafter, I went to UCLA, where they took two liters of stem cells from the bone marrow in my back, which was very painful. I never thought that I would have to go through this again, but here I was preparing myself mentally for battle once again. It was rough, but I knew that it could be so much worse.

I went in for the stem cell transplant on December 18, 2002 and was there for twenty-eight days. Because of my low blood counts, I wasn’t allowed any visitors except my Family.

My Family came in and decorated my room for Christmas. My parents made sure that I was never left alone and that someone was with me day and night. My Dad became an unending source of entertainment and could always make me laugh, and look for the positive in whatever situation. My Mom was always there to comfort and nurture me. Just having her there seemed to ease my pain. My sister and brother were as well were always there for me. I do feel so very blessed having them. I was fine not having others come visit me, because I wasn’t feeling well by any means.

After being in the hospital for 28 days I was now able to leave. I was very weak and 45 pounds lighter, but I was also excited to get home. I started radiation therapy in February and finished in April 2003. Later that month, I had a gallium scan that concluded once again that I was cancer free. Now the score was Alese 2, cancer 0. I was still weak and frail and decided that the next year would just be spent on recovery.

Five months later, I had a follow up scan. After the scan I went shopping with my girlfriends; on my way home a family friend, who worked at a church called me. She said, “Alese you have been through so much already, I am so sorry to hear the news- if I can help you in any way please call me.”

I was in shock; I didn’t know what she was talking about. I hadn’t heard anything. I asked her what she was talking about, and she said that she was sorry, she wasn’t aware that I hadn’t been told about the third recurrence.

I got home and asked my parents if this was true? They said they had called the church while I was out to ask for prayer, in the middle of so much uncertainty there must have been a misunderstanding. My parents felthorrible, they said they didn't want to tell me over the phone so they were waiting for me to come home.

I felt as though I’d been hit by a bus! I was so sure that I had put this whole cancer thing behind me. Your body can only take so much chemotherapy during a period of time and as far as my doctors were concerned, nothing else could be done for me.

My parents had eleven different Doctors review the scans, all concluded that the disease had returned. My family and I were not about to give up, or lose hope.

We looked at alternative treatments, and found promising clinical trials at Memorial Sloan Kettering in New York City. We contacted them and they felt I was a good candidate for one of their trials.

During this time, we received countless e-mails from people all over the country who offered their support, prayers, and financial resources.

The support I received floored me; I could never have imagined that all of these people cared about me, I wasn’t due to leave for New York for another week.

During that week, we arranged a biopsy. I woke up from that surgery in a tremendous amount of pain. They had to collapse my lung and I woke up with a tube sticking out of the left side of my chest. The only thing worse than having the tube in my chest was having it removed while I was awake.

Then I remember my parents were standing over me, saying that I didn’t have cancer! The doctor couldn’t find anything! Not only that, no one could explain why it showed up on the scan, and yet NOTHING was inside of me. He still took some lymph nodes from where they had lit up on the scan for a biopsy just to be sure.

The biopsy came back negative. My doctors wanted another pathologist to look at the slides, so they sent everything to Stanford for further review. Ten days passed (which seemed like an eternity) and Dr. Link called my Dad and told him that they found no signs of cancer.

Just to make sure, I had another scan done days later and nothing on the scan lit up. Doctors declared it a miracle, and somehow I had been cured. It was beyond unfathomable; it was the hand of God. I counted my many blessings, and the plans to go to New York for treatment were cancelled. Finally, I began to live my life as any other 19-year-old would.

Within the next year, I went back to college, hung out with my friends and simply enjoyed life. I am Thankful for every day that I am able to live. I have an amazing family, friends, and I am constantly surrounded by people who love, and support me.

If I could take back all that I have gone through, I wouldn’t, because I wouldn’t be the person that I am today. My Parents have not only taught me but they have shown me throughout life, that no matter what obstacles we face in life we have a God big enough to see us through anything.

On November 16, 2004, I went in to UCLA to get a flu shot, and meningitis shot. (I’m in college now, so it’s standard.) While I was there Dr. Fieg examined me. I had told him that I had been really tired recently and I wasn’t sure if I had a bug… He felt something on my neck, but because of all of the biopsies I'd had, he thought that it was scar tissue. As did I, so I wasn’t worried.

They ran blood work to see if I had any kind of infection, so they could administer the correct antibiotic. My blood work came back and there were some things on there that alerted doctors. My SED rate was elevated to 34.

Two days later, on November 18, 2004, I had a biopsy and the results came back positive for Hodgkin’s Disease once again. On November 28th, my father and I flew to Sloan Kettering in New York to consult with Dr. Owen O’Conner, one of the leading Hodgkin’s researchers in the country. I was living on the east coast for 18 months and receiving clinical trials at Memorial Sloan Kettering in New York City. I now live in California, and get treated at City of Hope but Dr. Owen O’Conner is still my leading Doctor who treats me.

I am not angry, or bitter, or really even upset that I am afflicted with this disease. I am not scared, I am motivated. I know that I CAN and WILL beat this. And when I’m done with treatment, I know that the score will be Alese 3, cancer 0, because I’m not going anywhere. I am not about to give up. I can honestly sit here and tell you that I feel blessed! I am blessed to have the family I do and friends who support me with their love and prayers. I have faith in an awesome and amazing God, and know that this too shall pass.

"...take a breath and hold on tight, spin 'round one more time and gracefully fall back into the arms of grace..."

Alese Coco

 
 
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