"Keep your face to the sunshine and you cannot see the shadow. It's what sunflowers do." - Helen Keller
Grayson's 2013 St. Baldrick's fundraising page:
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 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 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.
Arden's legacy is a story of love, hope, faith, happiness, and kindness, even through the worst kind of suffering. We carry her spirit with us in our hearts as we continue to work to raise funding for and awareness about all childhood Cancers. Less toxic, more effective treatments are desperately needed to save the kids who understand all too well how precious life is.
Aug 26, 2013 10:25pmHello, from lower Saucon township!
It's been quite a year, but whatever challenges we've faced during the course of our move to the Lehigh Valley, they pale in comparison to what we've already faced as a family. Grief and gratitude help put many things into perspective.
Grayson is gearing up for 1st grade, already practicing with his intramural soccer team, and Zoey is ready for her new preschool and ballet classes. We're celebrating my Dad's retirement, my parent's 45th Anniversary, Rick's parents' 60th anniversary, weddings, births, birthdays, communions, graduations, and so many other tremendous milestones.
Rick and I are feeling blessed and stressed, but all seems to be coming together just fine. We LOVE our new home and everything (and everyone) we've gotten to know since we relocated, and we look forward to the wonderful memories we'll create together here. Always a family of five, we embark again on the new encounters and (hopefully not awkward) introductions, new friends who will hear our story as a family of five, one member who will just have to be introduced via pictures and stories. We appreciate those who already know us here and have welcomed us so warmly!
As we settle in to our new routines, we face what is, among others, a difficult date on Friday -- August 30th, 5 years since we said goodbye to Arden. It seems like as soon as August begins, my cycle of sleeplessness and tasks to distract myself begin. It's never easy, but as the date approaches, our family and friends once again have surrounded us with love and comfort. We were especially touched when our nephew, Noah, suggested we take family pictures at the memorial garden so Arden would be included with the Bucher photos commemorating my in-laws' 60th. We got a particularly touching moment with Grayson and Zoey after they decorated Arden's resting place with sunflower petals. Zoey had gently placed her head on the top of the rock wall in a "hug," while Grayson tilted his head skyward with closed eyes in reflection. I'll never forget how my breath caught in my throat upon witnessing their connection with their sister. Priceless.
I wrote a thank you note earlier this year to the local area SBF supporters via the Philly Area Event Facebook page, and I thought it might be fitting to share it here. We don't have a bench, or gravestone, or any physical marker for Arden. What we do have is the continuing legacy of love and hope when it comes to investing in research that will improve outcomes for the other children (and their families) who find themselves in the fight against cancer. The donations that go directly to the scientists working on improved, less toxic, targeted treatments are what make us say, "Her death was not in vain." Thank you so, so much for all you have done and continue to do -- for the others who deserve better outcomes.
While Arden was in treatment, diagnosed a month before her 3rd birthday, our focus was completely on her healing. We tried to give her every opportunity to be what she was – a child. One amazing thing about children – the nurses and doctors tell parents early on, “If they're not playing, they're in pain.” What they don’t tell you is how often these kids play through the pain, how high that threshold really is. We play along – hoping to get them through the journey to adulthood.
Grayson's fundraising page is still up and running until the last day of the year. (Link http://www.stbaldricks.org/participants/mypage/587784/2013/.) If you're looking for something to do when remembering the unfairness of Arden's short life, please consider a small donation. (And again, for the frequent donors - thank you! We appreciate your past support!) For the 5 years of our loss, perhaps consider some denomination divisible by 5?
Yes, we're shameless in our requests when it comes to funding childhood cancer research. No, we're not sorry. Thanks for putting up with us! ;)
Love to all and God bless,
P.S. Anyone interested in keeping up with the latest advocacy efforts related to childhood cancer research, please consider joining the Speak Up network on SBF's site. http://www.stbaldricks.org/advocacy/
Great things are possible when we give voice to those who can't speak for themselves! Thank you!
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