Bella’s Story

The below passage is written by Bella Eckhardt, brain tumor fighter, prior to her passing on June 8, 2023.

“Izabella passed away this morning leaving a light in all of us. Do we let it burn out or do we feed it into a fire and change the world…let her ripple be felt throughout the ages.” -Miki Eckhart, Izabella’s Mom.

In May of 2016, at the age of 12, I was informed I had a Pineoblastoma Brain Tumor, a grade 4 brain cancer diagnosed in less than half of one percent of all pediatric brain cancer cases. My tumor rested in the very center of my brain surrounded by major blood vessels with the consistency of tissue paper. My tumor also rested at the opening of my spinal column, causing five days of spinal fluid to build up in my brain. My only symptom was severe elbow pain, which led to multiple wrong diagnoses and left me with only 24 hours to live when my tumor was finally discovered. My tumor grew from the size of a dime, at the time of discovery, to the size of a quarter in the four days as we waited for my biopsy results. In the following months, I went through multiple surgeries, proton radiation in California, and six months of additional chemotherapy back in Nebraska. For six years, I fought against the side effects from the cancer treatments that I received, but during those six years I was completely cancer free. At the six-year mark, we celebrated the fact that I had reached the time to breathe again…the time where I had the same chance of getting Pineoblastoma as I did the first time…1/2 of 1%.

In June of  2022, I went to my oncologist for a routine MRI checkup and left with the news that I have nodules in my spine. I had a spinal biopsy and, once again, it came back as Pineobastoma. For several months following, MRI reports would show a few new tumors each scan, but nothing significant in size or numbers. The doctors scrambled for some type of treatment plan, but nothing was curative. I was given one round of chemotherapy, which led to a month in the hospital and some pretty bad side effects. I decided that chemo wasn’t the best choice for me. Radiation options did not give me a better outcome. My team was able to reach out to several other tumor boards, in other states, and even contacted some medical teams out of the country. The options for a recurrence of my type of cancer are limited and the side effects of trying those treatments were also unacceptable to me, as I would spend the time, I had left miserable and in and out of hospitals. None of these options would have saved my life, only increased it by a few weeks or months, with the side effects taking away the quality of the time I have left. I decided instead, that with the time I have been blessed with that I want to live, to spend time with my loved ones, and to enjoy life. 

In 2023, I traveled to Omaha for an MRI to check on tumor progression. The scan showed a significant increase in the number and size of the tumors in my brain and spine. My body is no longer mine and has started to experience nerve pain and weakness in my legs and back. The tumors are taking my vision and at times making it hard to smell and talk. I have fallen several times and struggled with my balance. I know that a cure for me is unlikely, and I have grown to accept this news. These symptoms will continue to get worse and without a miracle will very soon take my life. 

That is where Team Jack and YOU come in, we together need to up our game in fighting for a cure, so that kids with cancer do not have to worry about the detrimental side-effects that the current treatments are spreading throughout their bodies, so that kids don’t have to face their own mortality, and so no more families must grieve the loss of a child.