After brain surgery, port placement, and Mic-key button placement, Lejla began treatment. We received a confirmed diagnosis of a tumor called Diffuse Intrinsic Pontine Glioma (DIPG). Radiation consisted of 36 sessions with daily sedation and trips through the tunnel between Abbott and Children’s. We also received infusions every 14-days. Lejla was our sassy, sweet, free-spirited, and wild child and I knew she was one tough cookie. I had told our team from the beginning that giving up was not an option. Lejla ended up being a match for an FDA-approved Pilot Study. We found hope. We began our journey by traveling from Minneapolis, MN, to the Children’s Hospital of Pittsburgh at the University of Pittsburgh Medical Center every couple of weeks for a vaccine trial. After 18-months of the Poly-ICLC vaccine trial, Lejla’s tumor progressed.

Upon Progression, we planned a new treatment roadmap and our radiology-oncologist agreed to re-irradiate, for possibly the first time in her career, for 32 sessions of radiation and more daily trips in the tunnel while sedated. We gained compassionate use of two different off-label trial drugs. We were successful at slowing progression so we could focus on quality over quantity left in Lejla’s life.

Throughout this entire time of treatment, our two other children had endured this journey as well. As most of us are aware, when a child has a complex diagnosis, it affects the entire family and the entire family endures the journey. It was hard for our children to watch their sister fight for her life since she was just one. However, they adapted well to Lejla’s cancer diagnosis, and her health and treatment. Our kids learned valuable lessons throughout Lejla’s journey that allowed them to enjoy making memories and spending time together with a deeper understanding of how precious time was with those you love.

One morning in August 2017, we woke up, it was a Sunday, and I only know that because I called our palliative nurse and I could hear the church choir in the background. Something wasn’t right with Lejla and after a home visit and some calls to our team, we headed to Children’s. We spent the next two weeks in the hospital, we had guests, Lejla’s birthday party, laughs, tears, and moments of tough decision making.

August 23rd came along and Lejla had deteriorated. I was lying next to Lejla with my hand on her chest. We were exhausted and I could tell Lejla’s heart was slowing. Her breaths were nearly non-existent. At one point, her heartbeat a large beat beneath my hand, and then there was nothing. She was gone, Lejla had passed.

We will continue to grieve, but we find peace knowing that part of her legacy will live on through the work of researchers trying to find better cures and treatments for other brain tumor families.

One morning in August 2017, we woke up, it was a Sunday, and I only know that because I called our palliative nurse and I could hear the church choir in the background. Something wasn’t right with Lejla and after a home visit and some calls to our team, we headed to Children’s. We spent the next two weeks in the hospital, we had guests, Lejla’s birthday party, laughs, tears, and moments of tough decision making.

August 23rd came along and Lejla had deteriorated. I was lying next to Lejla with my hand on her chest. We were exhausted and I could tell Lejla’s heart was slowing. Her breaths were nearly non-existent. At one point, her heartbeat a large beat beneath my hand, and then there was nothing. She was gone, Lejla had passed.

We will continue to grieve, but we find peace knowing that part of her legacy will live on through the work of researchers trying to find better cures and treatments for other brain tumor families.