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Arden Quinn Bucher

  • Neuroblastoma

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Just one month before her 3rd birthday, Arden had been playing hard up to the very day the first symptom appeared.  She had no prior indication that anything was wrong.  She ran, jumped, climbed, and danced.  She enjoyed playing on her swingset, singing in her music class, swimming at the Y, and painting.  She has always been a happy, friendly, loving little girl.  She slept well, had a great appetite, and had boundless energy.  On Tuesday night, October 9, 2007, she woke up at 9:20 pm, screaming out in pain.  I (her Mom) knew immediately that it was a scream I had never heard before; it was not a nightmare, definitely not just discomfort.  I found her writhing around in her bed in a fetal position, and when I asked her what was wrong, she said her tummy was hurting.  She was covered in sweat, yet cold to the touch.  When I took her downstairs to take her temperature, she was the palest I've ever seen, even in her lips.  Her first axillary temp was 93, the second and third were both 94.  After getting advice from my parents, who volunteered to come over to watch Arden's baby brother if needed, I phoned the pediatrician on emergency call, who advised me to take her to the closest ER (even though it was a smaller hospital; he thought they would at least know if it was appendicitis quickly.)

After 4 hours, one abdominal X-Ray, and lots of waiting around, we were advised to follow up with our pediatrician the next day.  Her belly was soft, and they didn't find anything on the x-ray.  They thought it might be mild constipation (even though I knew she was having regular bowel movements) or gas.

The next day, Arden was more herself, although I noticed she took more breaks from her play than usual.  The stomach pain seemed more intermittent as well.  The pediatrician examined her and said we should start her on 1/2 dosage of Miralax to rule out the idea of constipation. She also gave me a list of "things to watch for" that might necessitate another trip to the ER (at a children's hospital this time.)

Sure enough, Arden's condition degenerated during the evening, and by Thursday morning, she accumulated each of the "things to watch for" the doctor mentioned the previous day. She was very still, didn't want to be moved, had no appetite, and had a low-grade fever. We called the office again, and once my father came to watch the baby, we were off to meet my husband at A.I. DuPont Hospital for Children in Wilmington, DE.

After a series of tests, from physical exams, to x-rays, ultrasounds, to finally a cat-scan, we had a finding that there was a mass in her abdomen, a tumor. There were strong indications that there was a sack of blood surrounding it, so most likely, some kind of bleeding had occurred (which might have been what caused the sudden pains for her Tues. night.) The tumor measured approximately 10 cm. by 6 cm. They said they suspected Neuroblastoma. The MIBG scan and biopsies confirmed the diagnosis, and Arden's case was considered stage IV, high risk.  We later found out that her battle was made all the more challenging because her NMYC was amplified, and her tumor had an unfavorable Schimada rating.  Thankfully, we are surrounded by the prayers, support, and help of family and friends as we struggle to understand all of this while still being strong for Arden during treatment.  We have enjoyed the "good moments" with her, the time between painful pokes, tests, surgeries, procedures, vital checks, and visits by strangers who want to "take a listen," when she could smile, enjoy books, and even play.

We know our little girl had a fighting spirit, and she fought for life on an oscillator and ventilator in the PICU at CHOP for five weeks, having gone into respiratory failure (the original cause of which is yet unknown) after her second stem cell rescue.  She developed Acute Respiratory Distress Syndrome (ARDS) and Systemic Inflammatory Response Syndrome (SIRS), yet none of us, not her parents, family, friends, supporters, or doctors ever gave up hope for her recovery.  Finally, on August 30, 2008, despite all of our efforts to the very end to save her, Arden's journey ended peacefully and painlessly, with her Mommy and Daddy by her side, finally able to hold her and rock her as we said goodbye. She remains with us every day in our hearts and our minds as we transfer our hopes for her survival to all of the other children who are still fighting. 

You are welcome to follow her journey on www.caringbridge.org/visit/ardenquinn

Written by her proud mom, Amy Bucher

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