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Patient Stories

- 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

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