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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.

stories:  Parent |  Sibling |  Community

Carlos’ Story

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 seems like a virus. 2 days later his temperature was 105 and wouldn’t stay down even with Advil for more than 2 hours.  I got very nervous and called our doctor at home.   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 2 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 2 in the afternoon and we were an hour from home. Our girls age 7 & 8 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’ 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.

132 weeks of chemotherapy later our son is a thriving first grader. This coming January will mark his 5th year in remission. In some ways we are grateful for this 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 tells us he’s lucky. Because he had cancer but he didn’t die. We feel lucky too.

— Liz Salguero

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

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 c.b.c. 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