Lejla’s Legacy
Lejla was born on August 18, 2013, at Unity Hospital in Fridley via emergency c-section. Lejla had fluid and a hole in her heart when she was in-vitro, was breach and measuring incredibly large. Upon delivery, and in the weeks afterward, Lejla was diagnosed with failure to thrive, but her other health concerns had naturally resolved.
After an infection in early February of 2015, Lejla was sent to Children’s MN for an MRI for what was possibly Bels Palsy from an infection that stemmed from strep or scarlet fever. Lejla was only in MRI at Children’s MN for twenty minutes. I thought that was a good sign. I received a phone call and could tell Lejla’s pediatrician, who was on the other end, had been crying as she told us the MRI scan revealed that Lejla had a tumor in her brain stem. Roughly five days after the scan we had brain surgery to take a biopsy for pathological diagnosis along with surgery for a port and Mic-key button.
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. “
Our Donation Story
By February of 2017, Lejla’s progression was obvious, and we knew we were on borrowed time. We were already grieving. We couldn’t radiate anymore, and no new drugs were available. I had a conversation with Lejla’s oncologist one night on my way home from work. I explained to her that she had to make sure we made decisions for Lejla based on quality and not quantity. She brought up options for donation and we decided that we would donate Lejla’s tumor to science.
We had agreed to donate Lejla’s tumor knowing that without more tissue, researchers wouldn’t learn more. We had been a part of clinical trial and understood the importance of gaining the right information and tissue samples to continue to research effectively and efficiently.
We spent our entire journey on trials and lived by the thought process that, “we must try, we hope our child is the one, but if she is not, she will have given researchers vital information towards finding a cure for the next family so they never have to live in our shoes.”
We made the choice to donate her tumor as part of a post-mortem tissue donation where multiple researchers were able to gain vital information from her donation.
We must try, we hope our child is the one, but if she is not, she will have given researchers vital information towards finding a cure for the next family so they never have to live in our shoes.
Lejla’s Parents