Dec 19, 2019 Latest post:
Oct 16, 2020
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
In early November 2019 Lily started to experience bone, muscle and joint pain in her back, hips and legs accompanied by a low grade fever. A visit to urgent care was followed by a visit to her Pediatrician and eventually to the CHOP Emergency Department on 11/26. She was diagnosed with Lyme disease on 11/28.
After nearly two weeks of treatment and PT her improvement was inconsistent and we were on a bit of a roller coaster of good days and bad days. On 12/13 we went to a follow-up visit with Rheumatology at CHOP and thanks to the swift response and action of Dr. Burnham were seen by Dr. Foster in Oncology the same day and left with a bone marrow biopsy scheduled for 12/16. On 12/17 Lily was diagnosed with Neuroblastoma. She will have imaging on Friday 12/20 to determine the primary tumor and will follow with chemo and surgery to remove the tumor.
It is a long road ahead with 18 months of chemo, surgery, stem cell transplant(with her own cells), proton therapy and immunotherapy. We have spoken with experts around the country and all roads lead back to the experience and expertise of the Neuroblastoma Team at CHOP.
Please keep Lily in your daily thoughts, prayers and intentions. As you all know in addition to her compassion and joy for life, she is an incredibly strong, fierce and relentless individual. These characteristics will serve her well in the coming months, but she will also need to rely on the support of her community.
Thank you for being here, for loving her and supporting us as we work to get this amazing kid cured from this terrible disease over the next 18 months.