Danjela
In May 2016, then 11-year-old Danjela was looking forward to her last week of school which would end with her 5th grade continuation ceremony and the new dress we just bought a few days ago. On the Sunday before her last week, Danjela woke up not feeling well with a headache that just did not seem to want to go away. Since migraines run in our family, we assumed that she was having one and put her to bed with some Tylenol and a Pepsi. She felt a little better throughout the day, but at dinner time she had no appetite and was extremely sleepy. We sent her to bed early and 30 minutes later, our nightmare began when Danjela started screaming in pain holding the left side of her head. We headed straight to the local ER where after a series of tests, we were told that Danjela had a 7cm mass on the left side of her brain – about the size of a fist. It had burst and was bleeding into her brain. She deteriorated quickly and was airlifted to Children’s Hospital Colorado and immediately went straight into surgery. We were told that if they did not operate immediately, our beautiful daughter would die. Dr. Todd Hankinson performed the surgery and saved our daughter’s life that night…something that we will never be able to thank him enough for.
Dr. Jean Mulcahy-Levy came to see us in the PICU following surgery and told us she was from the Neuro-Oncology team and that she would be Dani’s doctor. At the time, we didn’t understand why she talking to us, but we trusted her completely. When we met with her to discuss Dani’s diagnosis, she already had a plan in place.
Danjela was diagnosed with a CNS Neuroblastoma brain tumor on June 3, 2016. This diagnosis blindsided us because up until the night of her surgery, we had no idea that she even had a tumor. She had no symptoms at all: no vision, hearing, or balance issues, no dizziness, nothing. Dr. Hankinson told us that her tumor had been growing for years, to the point that it was putting pressure on her skull and thinning the bone structure. We felt like we had been hit by a truck which then went into reverse and hit us again.
Danjela’s first round of treatment started with 6 weeks of daily radiation combined with a chemotherapy “boost”. After that was 6 months of chemo-only treatments. Dani suffered from radiation side effects including sore throat, fatigue, and severe radiation burns on her back, chest, and neck. During her chemo treatment, we discovered that she had a reaction to the chemo where her body would spike a high fever, but there was not an infection. She ended up being admitted multiple times during those cycles but never had any infections. Her weight dropped dangerously low, and she had to have a feeding tube placed during the last two cycles of her treatment.
On February 14, 2017, Dr. Mulcahy-Levy shared with us the wonderful news that the treatment worked and Danjela was NED (No Evidence of Disease). We were thrilled knowing that the treatment had worked. We went to MRIs every 3 months and when Danjela started her 7th grade year we had graduated to every 6 months for MRIs. We were so happy and so thankful!
In August 2018, shortly before she started 8th grade, we noticed that Danjela wasn’t feeling “right”. Dr. Mulcahy-Levy asked us to come in for an unscheduled MRI after which we were told that the tumor had grown back and Danjela had officially relapsed. Two weeks before the first day of school, Danjela underwent another tumor resection with Dr. Hankinson. The pathology officially confirmed a relapse and Dani started a clinical trial with Dr. Lindsey Hoffman. We were so hopeful for this new treatment plan, but unfortunately, Danjela was unable to complete the treatment. In October 2018, shortly after starting the trial, Danjela had a series of seizures that left her partially paralyzed and weak on her right side. We were eventually told that she was diagnosed with SMART Syndrome, a rare late-term side effect of targeted radiation. It mimics a stroke but is self-resolving. She spent 3 months in the hospital and by the time she was discharged, she was able to walk and use her right hand & arm.
In 2019, once she was strong enough, Dani went through another 6 weeks of targeted radiation to treat the relapsed tumor. Danjela responded beautifully to the radiation and the remaining tumor had started to shrink. But unfortunately, Danjela’s tumor is relentless and continued to spread in small sections.
2020 brought us more tumor spots and more radiation. Throughout 2020, Danjela went through 2 additional rounds of short-term, targeted radiation and one 6-week round of daily, targeted radiation. Unfortunately, the radiation began to take its toll on Danjela’s body. The right-side strength that she regained after her seizure disorder in 2018 was now all but gone. The radiation had resulted in an almost complete loss of the use of her right arm and extreme weakness in her right leg. She has endured some permanent neurological damage as well as memory loss and difficulty with speech. Dr. Mulcahy-Levy told us that we were reaching the maximum tolerance point for radiation and that it might not be an option for future growths, which we know will appear.
In March 2021, we received the news that we were dreading…more tumor growth, and this time it had spread to the right side of her brain. The positive side to this news was that the new growth was in a new area that had never been treated by chemotherapy or radiation, so we were able to have Danjela go through another 6-week round of daily radiation. Danjela’s post-radiation MRI showed that, once again, her tumor cells responded to the radiation and were shrinking. Dr. Mulcahy-Levy also suggested that we start Danjela on an alternative therapy that would not completely kill the tumor cells, but may significantly slow down the growth. We were so excited to start Danjela on Pazopanib and had high hopes for this treatment. Unfortunately, Danjela did not respond well to this new therapy. Even after altering the dosage and the timing of administering the medication, Danjela’s kidneys were showing some signs of distress and we had to halt this new therapy that gave us so much hope.
As of December 2021, there are still no new treatments available to Danjela and we are quickly running out of options for when the next tumors spots appear. It’s not a question of IF they appear, it’s just a question of WHEN because we know that inevitably there will be more, and we have no answer to “What do we do now?”
