Caitlin is the only pediatric cancer patient alive with BPDCN. There are
no standard on how to treat it because its so rare. We have so much
medical expense and your help will lift a lot off the financial burden.
Our daughter is going through transplant and the first 100 days is
critical because she has no immune system. Therefore, the doctors are
requiring us to stay on campus. We just found out our insurance will not
cover this expense. In addition, because its not cover, the amount paid
will not go toward our maximum out of pocket expense. There are very
specific medications she needs to take. Our case manager said, even
after our insurance, we will pay $2,500 copay. Thank goodness we have
insurance but our expenses are adding up quick. This is the second year
battling this rare cancer.
In December of 2015 our daughter, Caitlin slammed her ankle while tumbling in gymnastics. Following the injury, her ankle looked badly bruised and swollen. We saw four different pediatricians who kept sending us home from late December to April. The bruised showed no signs of improvements and we asked if this could be a tumor or life threatening. However, the doctors reassured us to keep compressing it to help reduce the swelling. During this time, the tumor got larger and a second tumor was starting to form.
We were finally referred to the City of Hope in Duarte, CA. Once we saw Dr. Femino, things moved fast. He ordered a biopsy on May 27th and we got the result on June 2nd which indicated Caitlin has AML Leukemia. Then, we were referred to a Leukemia specialist at City of Hope on June 3rd. It was during this appointment that we were informed Caitlin has one of the rarest and most aggressive forms of cancer- Pathologist report states that she has Blastic Plasmacytoid Dendritic cell Neoplasm (BPDCN).
On June 6th, she had a bone marrow biopsy. City of Hope has a clinical trial for a drug called SL-401. This drug targets BPDCN cancer and Caitlin was granted a compassion approval through the FDA on June 15th. The trial worked great for the first few treatments but the cancer is so aggressive, it found a way to avoid the drug. When the trial was deemed ineffective in treating her tumor, they treated her with traditional chemo and radiation.
Her beautiful long hair was falling out after on round of Chemo. She decided to shave it off and donated her hair to locks of love. She eventually went through 3 rounds of Chemo before she was ready for a bone marrow transplant. The goal of the bone marrow transplant is to keep her BPDCN cancer in remission. Without the transplant, it is guaranteed to come backend the survival cases are small.
For Caitlin's transplant, she did not have a perfect person match. Instead, she has a single cord that came from Malaga, Spain. When Caitlin was diagnosed, there was only one other child known to have this rare disease. Unfortunately, Alohi passed in December of 2016. Her mom wrote on Instagram, she is now cancer free and in heaven. Caitlin is currently the only child left to fight this rare disease.
Caitlin said she has to fight and win this battle in order to give the next child hope. She wants the next child diagnosed with BPDCN to know they can survive! She has been such a warrior and so positive throughout this journey. Like one of her teacher said, " she has taught me more then I could ever teach her".
Your donations will go toward Caitlin's medical expense. Thank you so much for your compassion and generosity.
FB kelly Caitlin Justin YouTube video https://youtu.be/6y0gur31FnE https://youtu.be/rHM22IQShVY