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Read a Story, Share your Story

When our children were diagnosed, we didn’t know anyone else whose child had been through this. Hearing other families’ stories gave us comfort and hope. Sharing our stories gave us strength. You may think you are alone and no one can understand how you are feeling. Read on to share the fear, pain, hope and joy that others have experienced. We would love to hear from you. Would you like to share your story?

These are our stories…

Julianna and Amanda talk about life as a sibling.  Tamara talks about Aeverie’s battle with ALL. Theresa shares Catherine’s story and more.

Our Stories

Carlos's Story

December 2001

Carlos had been sick off and on all fall. He would get these low grade “phantom” fevers — they would come out of nowhere and then just disappear. Then one day he had a temperature of 102. We took him to the doctor and they said to just keep an eye on him — it seemed like a virus. Two days later his temperature was 105 and wouldn’t stay down even with Advil for more than two hours. I got very nervous, called our doctor at home, and she said to bring him in the next day. They did a quick blood test and called us at home that afternoon. The doctor said his counts were all very low and he needed to see a specialist first thing Monday morning. We didn’t need an appointment — just to go as soon as we got our other children on the bus to school. They’d be expecting us. The next morning, we drove almost an hour to the doctor’s office. We had been told he was a specialist in blood disorders but we didn’t know he was also an oncologist until we were sitting in the waiting room. All around the room were letters from grateful parents and messages of hope. I kept thinking, "This isn’t happening to us...he doesn’t have cancer. He’s such a baby. Just two years old and still in diapers. Cancer is something that happens to grown ups."

Everyone in the office was very gentle with us and explained everything very slowly and carefully. First, they did a blood test. Then, they did a bone marrow aspiration and spinal tap. Then, after what felt like hours, the doctor came back into the room and said, “I’m sorry. It is leukemia.” Our whole world came crashing down around us. By now it was two o'clock in the afternoon and we were an hour from home. Our girls, ages seven and eight at the time, would be getting home from school soon. Someone needed to meet the school bus. How would we explain this to them? We needed to go home and see the girls, pack some things for the hospital and call friends and family. After the longest day of our lives, everything was happening too fast.

Worst of all, during the difficult procedures Carlos had endured that day, we had promised him a ride in Daddy’s jeep for being such a good boy. We desperately wanted to keep that promise. But Dr. Joe told us we couldn’t go home. We couldn’t go pick up the girls and explain things to them. Carlos’s ride in the jeep would have to wait. We needed to go immediately to Yale New Haven Children’s hospital where he would be admitted. He needed blood transfusions and other medications to stabilize him immediately. He had to be prepped for surgery the next day. Then the doctor said we would probably be there for a week to 10 days. We were stunned.

And yet, after 132 weeks of chemotherapy, our son went from that hospital bed to becoming a thriving first grader. This January will mark his 14th year in remission. In some ways we are grateful for the experience — it made our family stronger.  It truly shaped and defined our lives. Everything comes instantly into focus — you learn quickly who are your true friends and unfortunately who are not. It was a long hard journey but Carlos was always so positive and smiling. We used to say we were going to put a sandwich board on him that said, “I’m a Chemotherapy Patient” and take him through the adult unit at the hospital. Carlos never waited to “feel great” to play...he just was happy with not feeling really lousy. He went to school when he could. Friends came to visit when he couldn’t go outside. He watched endless movies and learned to play video games. He ate ice cream for breakfast and waffles for dinner. He would tell us he feels lucky. Because he had cancer but he didn’t die. We felt lucky too, and still do.

Today Carlos is 16 and is in high school. He competes in fencing, plays piano and enjoys life as a typical teenager.  #grateful...

— Liz Salguero

Amanda’s Story

My story begins in December of 2001. I was just eight years old and in third grade. I had had a normal school day, when the principal called our classroom and told me that my sister and I were to go home to our friend’s house, which we didn’t think was weird at all; we’d done this before. We spent the afternoon there, had dinner, and even got into our pajamas and got ready for bed. My Dad came and picked us up, and we went home still thinking that nothing was wrong. When we got to the house, my Dad took us up to Julianna’s room and told us the unimaginable. My 2½ year old baby brother had been diagnosed with cancer. I panicked. My sister and I started crying hysterically. We were just seven and eight years old, and cancer was such a scary word for us. Even worse, I had just read the book, A Thousand Paper Cranes, in which that main character died of a type of leukemia, the type of cancer that Carlos apparently had. My Dad, sister and I packed up a bag to bring to my Mom at the hospital, remembering to pack a few toy cars for Carlos and some herbal teas for Mom. My Dad left to deliver the bag to Yale, while my Mom’s best friend Alison (the woman whose house we spent the day at) watched us. The first thing I did after my Dad left was write in my diary. The last thing I wrote on the page was a huge, broken heart that said “I’m so sad!” written on the inside, with blue tears surrounding it.

School was so hard the next day. I told my whole class about what happened, and everyone was so supportive and caring, which did make making it through the day a lot easier. However, when it came time to tell my friends, I just broke down on the playground and started crying. When they told me that they understood because their grandparents had cancer, I felt even more isolated. They couldn’t possibly understand; their grandfathers were old, but Carlos was still a baby, and he was so close to me. Although my friends thought that they were helping, and a lot of the time they did, their comfort at times felt false. Also, because my friends were so young themselves, they wanted to tell me about their problems, which I just wasn’t ready to handle. I wanted the focus to be off of them and Carlos, and to be on me. Understandably, I felt a little needy, especially in the beginning. That first week that Carlos was in the hospital was probably the hardest on me. I almost never saw both parents together, and when I did, they both were too run down to talk about anything but Carlos. My Dad “quit” his job for the rest of the year to help out, but he still wasn’t around very much. Yet, my family was my biggest comfort to me. We held nearly nightly family meetings, where our “American Girl Dolls” vented about how annoying it was that Carlos was getting all the attention. My sister and I slept in the same bed for months. I practically moved in with her, even taking up a drawer in her room for some of my clothes. When Carlos had to have treatment and was in the hospital for a few days, my parents switched places every day or so. Whenever this happened, my Dad took us rock-climbing at a local gym to distract us. When my Mom came home, we always had a “Girl’s Night,” with dinner at a favorite restaurant, a movie in bed, and a sleep over in Mommy and Daddy’s room, a rare and special treat before Carlos got sick. It was a comfort to know that we always had each other to help each other through this difficult time.

When Carlos was home, nothing was the same. Before he was diagnosed, I remember being in the middle of a piano lesson downstairs, while upstairs, both Carlos and my Mom were crying; Carlos in pain, and my Mom out of helplessness. She could do nothing to bring down his soaring temperature and ease the pain. After diagnosis everything changed again. Carlos was sluggish, often not even getting out of bed for days at a time. He watched Shrek so many times that my sister and I can still quote entire scenes from the movie. Carlos used to love pushing around his toy trucks, and it used to annoy the entire family. The only time I remember my Dad ever crying was when he was picking up those toys, thinking about how Carlos may never have the strength to play with them again. On the flip side, Carlos was an amazing patient. Whenever he did feel well enough to play, he would. In the hospital, he used to stand on his IV pole and have my Mom and Dad race him up and down the hallways. He was still my annoying little brother. His courage was unfailing, and he almost always had a smile on his face, even when his counts were so low he couldn’t even leave the house. His spirit amazed his doctors, his teachers, and his family.

Today, after 2½ years of treatment and almost five years of being in remission, Carlos is your average seven year old. Besides having to go to the doctor’s every other month for a special check-up, he is exactly like all of his classmates. He adores the movie Cars, loves to play outside, is good at math, and has a “girlfriend” named Lily. He’ll be going into second grade next fall, and next January, we will be celebrating his five years in remission mark, the “safe zone” for cancer survivors. Our family has been made all the stronger by going through this ordeal. We still have family meetings when we need to, and we all know that we will always be there for each other. Throughout this whole situation, Carlos is the only one who has gone unchanged. He is still a happy-go-lucky little boy. Whenever I think of what my family has been through, I can’t help but smile, because despite everything, we are really lucky to have a person like Carlos in our lives.

— Amanda, Age 13

 

Julianna: A Sibling’s Story

Carlos, Diagnosed December 2001 at age 2½

When my little brother Carlos was diagnosed with Leukemia, I didn’t know what to think of it. We were all very little, and I wasn’t sure what was going on. At first, I thought Leukemia was a kind of truck, because Carlos loves to play with cars. Of course, later I understood that he was sick.

He got all the attention, which I can’t blame him for, but did. Adults would fuss over him, and whenever we got to talk to people, they would ask, “How’s your brother?” It was a hard time for my sister and me as well. He didn’t really know that he was sick. He thought finger pricks tickled, and had an all round optimistic look at everything going on. When he wasn’t feeling really sick he was still very energetic and playful.

Carlos has a big head of hair, and unlike most leukemia victims, he kept it. His hair did fall out, but only in the back so you couldn’t tell the difference. Some mornings he would wake up with a couple of hairs on his pillow and that was all. The only time it seemed like there was a problem was when he spent weeks at the hospital, or when he complained about the lights being too bright.

Another thing was his port. A medium sized lump on his stomach-chest area. He thought nothing of it, when we had guests, he would lift up his shirt and show it to everyone.

Once we were coming back from a party where they showed the movie, A Walk to Remember. The girl in the movie dies of leukemia, and he said, “You know, mom, that girl in the movie died of leukemia. Not everybody does though. I didn’t.” It really made me think, because I wasn’t sure he really caught the concept he was sick when he was going through it. He was getting toys, and watching movies, and having dessert as meals. But he was also going through Leukemia, and he survived. It just makes you a lot more thankful for an annoying, courageous seven-year-old brother.

— Julianna, Age 11

 

Aeverie’s Story

My daughter, Aeverie was finally diagnosed with A.L.L. at the age of 4 after being mistreated by several “specialists.”  Aeverie had been symptomatic for approximately two months prior to her diagnosis.  She suffered from swollen lymph nodes, unexplained fevers, a large blue bruise right on her forehead and worst of all, crippling pain in her limbs.  A simple CBC was never taken.  By the recommendation of our wonderful pediatrician, we ended up at Connecticut Children’s Medical Center in Hartford, Connecticut where she was diagnosed with leukemia within an hour after her arrival.  Her marrow was 88% packed with blasts.  It was that very moment that changed our lives forever.  The nurses told me she would be admitted at that time and explained the basic course of treatment but everything they were telling me was too overwhelming.  An intense urge came over me to leave and not look back — to take Aeverie and leave because this was not happening.  If I walked away, cancer would not happen to my beautiful, happy, blonde 4 year old daughter.  After much pleading, the staff allowed me to take her home just to pack some things but I was to return immediately.  The drive home was approximately an hour and luckily my mom had come to the appointment with us and was able to drive home.  I was a wreck both emotionally and physically.  I kept gazing into the backseat at that beautiful child and I’m sure she was wondering why the heck I was crying so hard.  It was fear of the unknown.  At the time, I had no idea whether she was going to live or die.

Once we returned back to CCMC, we were put into a private room where I found a large tote bag sitting on the hospital bed from Circle of Care filled with everything imaginable one would need for a long hospital stay!  There were toys for Aeverie, every personal item you can think of from good shampoos and conditioners, to toothbrushes, a thermometer and anything we needed to make our stay more “comfortable.”  It was at that moment that Circle of Care became a wonderful support system for me during Aeverie’s two year treatment protocol.  She endured endless blood draws, bone marrow aspirations, blood transfusions, daily medications, occasional constipation, fatigue and countless hospital visits but through it all she kept a brave and optimistic outlook.  Even when we had to rush to CCMC at 2am because of a fever, she was a trooper.  (This happened on several occasions—not fun!)  The nurses loved working with her because Aeverie would go for her appointment already expecting to have her labs drawn she she’d jump up on the exam table and get her “tubey” ready for them.  (All I can say is Thank God for emla cream!)  She did lose her hair but it didn’t faze her in the least.  Aeverie went into remission immediately upon the start of treatment and fared pretty well throughout the ordeal.  By no means was it easy, but having a great support system really helps to keep your head up during the roughest of times.  She still attended school and was able to lead a fairly “normal” life with a few minor restrictions here and there.  Her treatment finally came to an end in June 2007 and it was a terrifying but extremely joyous time!  CCMC had become such a “safety net” for my family and we relied on them to give us positive health updates each month.  They gave Aeverie a clean bill of health and sent us on our way to resume where we had left off two years prior.  I don’t know that there is every any return to normalcy after a cancer diagnosis, especially in a child, but we are certainly doing our best.  Since then, we have moved to Texas and she sees her oncologist every six months now.  There are times I panic when she gets a fever or isn’t feeling well.  In fact, I recently rushed her to her oncologist because she was complaining of a sore ankle.  Her labs were terrific and the sore ankle was due to soccer!  That’s the hardest part of survivorship, for me at least.  Every earache, pain or fever sends panic over my body.  Aeverie, however, hasn’t looked back since.  She has been on the All “A” Honor Roll for two years straight, was rewarded for perfect attendance, is in her school’s gifted and talented program and is a very competitive soccer player.  She is living proof that there certainly IS life after cancer!

— Tamara

 

Catherine’s Story

When my husband and I got married, we decided to donate the money we would have spent on favors to a charity.  Despite my very traditional mother’s initial hesitation, she agreed and told us that we should donate the money to St. Jude’s Children’s Research Hospital.  I never asked her why, we didn’t have any family or close friends whose children battled cancer (or none that I knew of at least), but St. Jude’s it was and so began an annual tradition of my husband and I donating money to what is an amazing organization.  Being a regular donor, I received many mailings from St. Jude’s with stories and pictures of families whose kids were battling different cancers.  I always found them heartbreaking, but it wasn’t until I had children of my own that the stories would make me cry.  I would always say to myself, “wow these families are so strong.” I think I somehow thought I would be immune to that struggle.  On February 16, 2006, I became one of those families when my daughter Catherine, not yet 4 years old, was diagnosed with leukemia.  I will never forget the days leading up to her diagnosis and the days that followed.  The crying, the blood draws, the doctors and nurses bombarding my husband and I with information and trying to educate us on how to care for our child.  I think those first few weeks were as frightening for us as they were for Catherine.  But Dr. MJ and Dr. Elisha, the two oncologists on call during our initial hospital stay promised us that 1) our daughter would not die from leukemia and 2) that one day we would see her running around and playing again.  I also remember the ER nurse telling me the night she was diagnosed that this cancer would be a “blip on the radar screen of her life.”  At the time, I did not believe any of them.

It seemed unbelievable that my child would have to endure 26 months of chemotherapy.  That my whole family would have to endure it.  Our son was only 16 months old at the time of Catherine’s diagnosis.  There are times I think he suffered as much as his older sister.

We are 13 months post treatment, and I can finally say the doctors were right.  She is like every other 7 year old girl I know, running around, dancing to Hannah Montana, playing piano, and going to school.  Cancer talk is not front and center in our lives.  Homework, play dates and karate are.  You would never know that just three years ago, she was pumped up full of steroids and other drugs, unable to keep up with her peers.

Amazingly enough, when I look back at our whole experience, there is no bitterness and no “why me.”  Indeed when I look back, I remember the love and support we received from friends and family: meals cooked, last minute babysitters and most importantly, shoulders to cry on.  We were able to meet the most incredible doctors, nurses, volunteers and families.  I cannot imagine not knowing Dr. Joe, a man whose dedication to his patients is beyond compare, and his staff who cry and laugh along with you.  I have made friends I would have never met were it not for this experience and knowing them makes me a better person.  Most importantly, it has made me realize that my daughter really can do anything.  Medically, she has not yet earned the term, “cancer survivor,” but in our eyes, she is the ultimate fighter.

— Theresa

Nicole’s Story: Capping Off a Journey Through Treatment, to Dartmouth

As high school seniors all over Fairfield County threw their caps into the air this spring, one in particular had even more reason to celebrate.

Nicole Graham of Old Greenwich was just entering her junior year of high school in September of 2012 when she was diagnosed with leukemia. What followed was an atypical series of events that had many wondering when, or even if, the active teen would be able to return to her spirited lifestyle.

“Two weeks into treatment, Nicole went into septic shock and was put into a medically induced coma,” says her mom, Michele. “During the coma, she suffered two strokes. When she awoke, she couldn’t move, talk, swallow; she had lost almost 50 percent of her muscle mass.”

Nicole was then moved from Yale-New Haven Children’s Hospital to Blythedale Children’s Hospital in Valhalla, NY, where she underwent two months of rehabilitation. Crediting her athletic ability, Nicole pushed through, miraculously fighting her way back not only to school in the fall of 2013, but to three-sport status, starting with fall field hockey.

“I don’t know what my teammates were thinking, but they made me captain of all three teams,” she says. “Later I was named one of Western Fairfield County’s top field hockey players and I was thinking, eight months ago I couldn’t even walk.

Nicole is now into the second half of her treatment regimen and feeling positive about the future. Throughout her journey, both she and Michele say Circle of Care kept them going.

“When Nicole was admitted to Yale, we immediately received a Bag of Love,” recalls Michele. “It was very sweet, and helped us realize that we were now part of a bigger family, a cancer family.”

Four months post diagnosis, when Nicole returned home from rehabilitation, she was contacted by a classmate from her high school who worked with Circle of Care’s “Art from the Heart” program, asking if Nicole might want a room makeover.

“I didn’t really want a bedroom makeover, because my bedroom is small,” she says. “I wanted to be surrounded by friends, so I asked if they could do the den.”

Taking a space that had been small, dark, and unused, the Art from the Heart team went to work transforming it into the perfect teen gathering spot. The wood paneling was painted white, the cubbies a welcoming lavender. Art from the Heart Program Director Karen Morgenbesser solicited photos from Nicole’s friends, which she enlarged and framed for the walls. Every detail was covered, down to the pillows adorned with Nicole’s initials. The reveal was something neither Nicole nor Michele will ever forget.

“When my mom and I walked into the den we were blown away. I never imagined it could look like that,” Nicole says. “The day it was completed, I had ten friends down there.”

“It was so important for Nicole’s disposition and recovery,” Michele says. “When day after day, you see your friends go to school, parties, concerts; the room impacts how you feel about your situation.”

Michele adds that the makeover addressed a promise she had made to her daughter early on; one that was in danger of being unfulfilled.

“The day we were driving to Yale, Nicole said she would need a room where her friends could gather. She was afraid she would be in her bedroom 24/7,” says Michele. “Then, with all that happened, I couldn’t work for four months. The room idea was dropped as a priority until we knew our financial situation.”

Michele says that though some may assume there are families who can take the financial hit of a cancer diagnosis, it simply isn’t the case.

“Like everyone else, you already have the regular expenses to think about; then you get these massive medical bills. You are living with uncertainty and it’s just the beginning of the process,” she says, calling Nicole’s room makeover a Godsend. “It was hugely humbling to have the den redone – to say ‘I can’t afford this right now because there is so much uncertainty in our lives.’”

This fall, Nicole will head to Dartmouth College to study economics. She began the application process early, taking advantage of the time she was homebound during treatment.

“I wrote my essays, getting things done early,” she says. “I knew that when I returned to school and sports in the fall, I wouldn’t have the endurance to do it. I couldn’t finish 12-hour days and hen stay up late.”

Endurance is still a hurdle for Nicole, who risks the onset of seizures if she overextends herself, due to the strokes she suffered early on. She will also continue her treatment, thanks to the pediatric oncology facilities located close to the Dartmouth campus. With consistent care and careful monitoring, she will be able to begin her studies and hopes to play club lacrosse. An avid public speaker and private confident, she will also no doubt be sharing her story at every opportunity, spreading a message of hope.

“People ask me, aren’t you tired of talking about it? And I say NO!” she says. “I am so open with my story because of what the chances were of my being here to do it. And I am here!!”

 

Trent’s Story

I was diagnosed in April 2009 with Burkitt’s lymphoma. I have been in remission for 5 years and like to help others during their battles. During my battle, I remember Circle of Care sending a package to the hospital. I still have a pillow made by a Girl Scout troop sent in that package. 

I am a Junior at Sacred Heart High School, love sports and want to have a sports debate show on ESPN. I have a YouTube channel where my friend and I host “Second Take” and debate the latest about sports. My favorite place to be is at The Hole in the Wall Gang Camp. I hope to be an LIT next year.

 

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    MBIA Foundation