Treatment for Baby Zoey's Brain Tumor

Hi friends, family, and community,

Our 9-month-old baby, Zoey, was found to have a very rare, large brain tumor on June 9th, 2023. It has been an excruciating month for our family as we navigate this process, all her care with five different specialists, and the medical system in this way for the first time.

Several months ago, we noticed that she was having very subtle, right-sided twitches that did not appear to be too concerning at first, and we just thought she was a somewhat "twitchy" baby. I sent some videos to her pediatrician and colleagues, who weren't too concerned and said they did not look like typical seizures. My gut told me something wasn’t quite right. Over time, it was apparent that these twitches were only on her right side, and it was clear that her right hand was weaker. She also wasn't sitting up by herself yet. At this point, we took her to her pediatrician and asked for an EEG. On 6/2, she had an EEG, which showed seizure-like activity from her left brain. This was not good news and I suspected the worst. Everything moved pretty fast then. She had an MRI shortly after that confirmed my worst fear - showing a tumor measuring 9cm x 5cm x 6cm in her left frontal, parietal, and temporal lobes. She had a brain biopsy done a few days later, a short stay in PICU where she did great, and discharged home the next night. The week that we spent waiting for her pathology results was probably the longest week of our lives.

After some scares from the initial impression ("looks embryonal" - terrifying news), the pathology results finally returned as a “Type 1 Diffuse Infant Hemispheric Glioma, ALK subtype." Subsequent molecular studies confirmed this diagnosis. It is incredibly rare but believed to have a good prognosis with surgical resection. However, due to its large size and vascularity (one of the main arteries in the brain, the middle cerebral artery, runs through it), her neurosurgeon said that outright surgery would be very risky, including risks of stroke, right-sided paralysis, loss of ability to develop language, and right eye blindness.

Her mutation makes her a candidate for targeted treatment with an Alk inhibitor, Lorlatinib, to try to shrink it (while avoiding inpatient chemo). Because there are very few studies done on this rare type of tumor, especially in the pediatric world, the medication is considered off-label as these medications often are. Her case was discussed in tumor boards at Seattle Children’s and consensus was that this medication as a good chance of working to shrink her tumor, making later surgery much safer. Her oncologist submitted the prior authorization, and after a long wait, we were told that her insurance denied coverage for this lifesaving and quality-preserving medication. We are devastated, as her care has already been delayed two weeks. Her doctor is requesting an appeal. All of this will take more time.

We have decided that instead of delaying her care for even longer while we go through this process with insurance, we will plan to pay out of pocket for at least the first month. In the meantime, we will keep fighting insurance. A 30-day supply costs $15,000 (!!!!) Hello, US medical system and our wonderful insurance system...and a special shout-out to Blue Cross of Idaho.

All of the funds will go towards Zoey's cost of medication for the first 30-45 days, and if there is any left, will all go towards her medical care - copays, deductibles, specialist visits, surgery, and recovery. We have no words to thank you all enough... for even reading this and for keeping her in your thoughts and prayers.

-Eunice and Donnie