When trying to sit down to write Jillian’s story, I kept thinking how I could share it from so many different perspectives that I became overwhelmed with how much we have been through the last 12 years. Yes, it has been over 12 years since our beautiful little girl was diagnosed with brain cancer. Somehow it feels like both yesterday and an eternity ago. That first year was filled with learning medical terminology and having brain surgery, MRIs, port placement, G-tube surgery, and countless diagnostic tests, labs, chemotherapy infusions, and radiation that we thought felt never-ending. It turned out that would only be a smidgeon of what Jillian would end up having to endure.

She has had 3 relapses of her original diagnosis of Medulloblastoma, which included years more of treatment and side effects. Then last July, Jillian had a scare of another Medulloblastoma relapse. We were so grateful to find out after a nerve-wracking 2-week wait for results, that the brain biopsy was negative. It was such a huge sigh of relief. Our beautiful and brave warrior was free of cancer!!!

Little did we know, just a few days later life was about to once again come to a screeching halt.  Jillian woke up in the middle of the night with what seemed like indigestion. We tried some home remedies, but Jillian just felt something was not right. When she asked to go to the ER at 3am, the worry really set in. Jillian, who never complains, felt that something was wrong. Sadly, she was right. She was diagnosed with a secondary cancer of T-cell Acute Lymphoblastic Lymphoma later that day. It was completely out of the blue. A huge mass had grown in her chest, compressing her lungs and heart. We were in utter shock! The day before, she walked the boardwalk end-to-end, enjoying time with her best friend, who had flown in for a much anticipated visit to celebrate their high school graduations. How could this be happening…again?

To say that this 5th and new diagnosis has rocked us all to the core and has been so challenging to navigate is an understatement. No one could ever be prepared to hear the words “your child has cancer.” But for my husband and I, it has been a life-shattering FIVE times! When you take a moment to comprehend that, it really makes you wonder how we ever got through all we have and still continue to live every day with what cancer has done to change our lives. Never in our wildest dreams could we ever imagine this happening to our healthy, beautiful baby girl. Our baby girl who has grown up in hospitals up and down the east coast, chasing clinical trials to help cure her disease. Our baby girl and now young woman who fought so hard for so many years through not only cancer treatment and its many side effects, but also through her academic years from the end of first grade through graduating high school - and, unfortunately, missing her planned acceptance to Muhlenberg College. She has truly learned the value and importance of true friendship, support, kindness, giving back and so much more.

I could write pages upon pages about her treatments from Lehigh Valley Reilly Children’s Hospital then and now, to Philly, Florida and New York to DC, but I’m sure that would be tough to read, as much as it would be tough for us to endure reliving to write. Cancer stole so much from our family and changed our life path forever. Watching Jillian fight everyday through treatments with such grace is still heartbreaking - and how she deals with side effects that impact her daily life even more so. Then there has been the month-to-month, constant worry of wondering if we would be able to make ends meet. And, year-to-year, not being able to look forward to or plan for anything, which is a difficult state to remain in especially for siblings who aspire to do so much more.

Through it all, we try to hold on to three things, which we recommend to our fellow Warrior families…Hope, Faith, and Love. Never lose hope. Cancer, as we’ve learned, is about percentages, and regardless of your odds, you can never lose hope that a treatment or surgery will work. Never lose faith. Whatever your faith, hold on to it most during difficult times. Lastly, never lose love. Love for each other, regardless of the unimaginable stress that you endure. We are on a new unwritten path as a family and hold to these core values no matter where we are led. With so much going in the world, these are probably values we should all hold on to. This disease does not discriminate, no matter your race, religion, political party, or wealth. We are all in this fight together, and only together can we find a way to defeat this awful and unfair disease.

We are forever grateful to everyone who has helped us get through difficult times and are especially grateful for PCFLV and all they do for families living this nightmare - from grocery cards to special ways to help Jillian smile, family events, Mom and Dad events and so much more they do to make life a little easier. We especially are so grateful PCFLV is still there for us. This year has been the most difficult year of our lives - we still have another year and a half to go before Jillian completes her treatment protocol. We ask for your prayers as we continue to navigate this journey and continue to pray for Jillian to remain cancer free forevermore.

Written by Jillian’s mom, Jodi

Please consider helping children with cancer and others in our community by scheduling a blood donation at Miller-Keystone Blood Center: https://donor.giveapint.org/donor/schedules/zip