Penelope is a very energetic toddler. When she falls, she gets right back up and keeps running. It seems that nothing can hold her back – not even cancer. At two years old, Penelope is being treated neuroblastoma. It is her spirit and smile that demonstrate what a strong and brave little girl she is..
Throughout June 2020, Penelope’s parents, Cassandra and Jack, felt that something was not right with their young child. Some yellowing around the eye progressed into a bruise. Originally, their pediatrician thought that the cause was normal toddler clumsiness. Afterall, Penelope was a lively two-year old. However, when her parents noticed a lump on the side of her head and her eye protruding, they took her straight to the Emergency Department. It was there that Cassandra and Jack learned that Penelope had cancer. A few days later, Hackensack Meridian Children’s Cancer Institute oncologist Katharine Offer, M.D. confirmed that Penelope had high-risk neuroblastoma.
“When they told us, I was in shock,” said Cassandra. “I sat there with the tears flowing. Jack and I were apologizing to each other. We both thought that this was somehow our fault.”
Penelope’s treatment started right away. Dr. Offer recommended a clinical trial through the Children’s Oncology Group (COG), a clinical trials group and the world’s largest organization devoted exclusively to pediatric cancer research. CCI’s membership in COG is supported through Tackle Kids Cancer funding. “The treatment uses MIBG therapy after induction to aggressively fight the disease. Penelope is a good candidate for this trial because of her high risk.”
Cassandra admits that being on a clinical trial is a “little scary,” however she and Jack were excited that Penelope was a candidate. “We are very pro-research, and when offered the trial we were excited because we feel it is the best option for her treatment. We want to do anything that can help her.”
The clinical trial requires Penelope to receive chemotherapy followed by Metaiodobenzylguanidine (MIBG) therapy. MIBG is a compound that can be combined with radioactive iodine (I-131) to deliver targeted radiation therapy. MIBG is so potent, that Penelope needs to be isolated several days after treatment as she emits radiation.
Treatment has been a tough road for this little fighter. The chemotherapy drugs have been very intense and have made her incredibly sick at times. “I learned that some of the medications she is on were actually created for adults. They have been so hard on her little body. That is one reason we need research. We need more medications that are formulated specifically for children.”
Additionally, to limit others exposure to the radiation, Penelope needs to be isolated for a few days after treatment. This means she needs to learn to sleep by herself, a new skill for this small child.
Down the road, Penelope’s treatment will include a stem cell transplant and immunotherapy, all which are standard of care with her diagnosis. Dr. Offer is feeling positive that this protocol is promising.
Cassandra is happy to share Penelope’s journey with Tackle Kids Cancer and believes strongly in its mission to fund pediatric cancer research. She reflects on Penelope’s experience to demonstrate the need. “Penelope won’t have a normal childhood. She can’t go to daycare or the park. Hopefully, others support will help future children.”
Penelope’s journey is being chronicled on her Instagram Page, @PositivelyPenelope, aptly named for this little girl with a big smile