Monday, September 14, 2009


"Keep your face to the sunshine and you cannot see the shadow. It's what sunflowers do." - Helen Keller

This is the heart warming story of a beautiful sun flower called Arden Quinn.

Arden (at 35 months) was playing hard up to the very day the first symptom appeared. She had no prior indication that anything was wrong. 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 knew immediately that it was a scream I had never heard before (not a nightmare, definitely not just "discomfort.") I found her writhing around in her bed, 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 under the arm temp was 93, the second and third were both 94. After getting advice from my parents, who volunteered to come over to watch the baby if needed, I called the pediatrician on emergency call, who advised me to take her to the closest ER (even thought it is 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 Mira-lax 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 (disease was also found in her bones), 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 N-MYC is amplified, and her tumor has an unfavorable Schimada rating. Thankfully, we were surrounded by the prayers, support, and help of family and friends, known affectionately as the "Arden Nation" as we struggled to understand everything while still being strong for Arden. We enjoyed the good moments with her, the times between painful pokes, tests, vital checks, and visits by strangers who wanted to "take a listen," when she could smile, enjoy books, and even play.
Initial treatment at A.I. duPont Hospital for Children
• 10-11-07: Diagnosis, assigned to primary oncologist Dr. Gregory Griffin.
• 10-18-07: Partial tumor resection by Dr. Stephen Murphy, assisted by Dr. Stephen Dunn.
• 10-24-07 to 3-31-08: Induction Chemotherapy under COG protocol A3973 = 2 cycles of chemo, stem cell harvest, 3 more cycles of chemo, second tumor resection (full, completed by same surgeons), 6th cycle of chemo.
• As of 04-10-08: No Evidence of Disease in scans (CT, MIBG, Bone, Marrows). Continued therapy at Children’s Hospital of Philadelphia
• 04-11-08 to 05-15-08: first of two stem cell rescues (tandem transplant) under care of Dr. Stephan Grupp and associates.
* 06/01/08: inpatient for second stem cell rescue (went into respiratory failure and diagnosed with Acute Respiratory Distress Syndrome (ARDS) on 07.25.08 - on oscicllator and ventilator in PICU.)
*08/30/08 - Arden's journey ended, peacefully and painlessly, with her Mommy and Daddy by her side, finally able to hold her and rock her as they said goodbye
Our hearts broke and our spirits sadened on 30 August 2008 when we read that little Arden went home to be with Jesus.
Ardens Mom Amy and Dad Rick and little brother, continue her legacy and continue to be a part of projects to raise funds and awareness to find the cure. Lots of walks and events have already raised thousands of dollars and desperateley needed awareness.
There is so much more in the pipe line - please go and visit Ardens site to learn more and to support support support
Ardens smile will always be so evident at every sun flower that i pass, her spirit will live on always. The work you are doing Rick and Amy is amazing to say the least and we thank you that through your pain and missing your precious girl you continue to fight this fight for the thousands of children around the world.
God Bless you, prayers, support and love always

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