Isadora's brain tumor fund

We thank you all for your love, support, prayers, and generosity. It is sometimes uncomfortable to accept help because we recognize that although Isadora's situation is rare and life-changing, we are still privileged in many ways to have access to great healthcare, adequate health insurance, and flexible work arrangements. Your well wishes, healing energy, and prayers are honestly enough to give.

Please visit CaringBridge for Isadora's full story and updates on her health. https://www.caringbridge.org/visit/isadoratilias

In short:

Isadora was diagnosed with a very large low-grade glioma brain tumor in May 2021 at 8.5 months old while we living in Tanzania. After medical evacuation to Washington DC Children's National Hospital, she had a long complicated surgery with an apparent success- gross total resection. The tumor, a Desmoplastic Infantile Ganglioglioma, was not supposed to recur, but unfortunately, her second post-surgical scan in November 2021 revealed that the tumor had recurred in the original area as well as spread to new locations along the meninges, brain stem, and cerebellum. In a second brain surgery in December 2021, the same surgeon was able to remove part of a cerebellum tumor for biopsy which showed it was the same type of tumor, with a mutation. Isadora got a port and started a standard pediatric brain tumor protocol in January 2022, which required weekly clinic visits for chemotherapy and she also went through physical therapy and speech therapy to address some effects of her tumor and surgeries. This 15 months of chemotherapy treatment was full of little ups and downs, including many many ER visits for fevers, but overall went well and we were all proud as Isadora "rang the bell" on March 1, 2023. She is now on "watch and wait" and will have MRIs and other ongoing evaluations every 3 months. She is doing excellent developmentally, surpassing every doctor's expectations! We are aware that many (most) kids with similar tumors will need more treatment, but we are hopeful that Isadora will beat these odds as she always has, and will not require more treatment. If she does, we are optimistic about the future of personalized medicine and the potential to target her brain tumors' mutation specifically with targeted medicines (most of which are oral).

More background story:

May 2021- How it started 

Isadora was born a healthy, hearty full-term baby in Wisconsin at the peak (hopefully) of the COVID-19 pandemic. She has always been a sweet, snuggly, and easygoing baby, but also very tough! When she was only two months old, Isadora returned "home" to Tanzania with mom, dad, and her two sisters, as that is where our family had been living since 2018 while serving as diplomats at the U.S. Embassy in Tanzania. Despite a bout of COVID-19 on arrival in Tanzania, Isadora continued to be happy, healthy, and well-adjusted and enjoyed playing with her sisters, nannies, and neighbors. She was reaching -in fact, leapfrogging- developmental milestones. Then, in early May 2021 at 8 months old, we noticed a strange swelling in Isadora's "soft spot". Our amazing doctor friend/neighbor was able to ultrasound Isadora's head in her own living room, of all places, and realized something was seriously wrong. A CT at the ER in Dar es Salaam confirmed there was something large growing in Isadora's brain, but the hospital was ill-equipped to perform additional tests and treatment. After 72 hours of logistical wrangling, the State Department "med-evac"ed mom (me- Ann Marie) and baby Isadora via air ambulance to Children's National Medical Center in Washington, D.C. where, after a 23-hour journey, a team of the best neurosurgeons were prepped and ready. Despite the logistical hurdles and long-haul travel, Isadora was in surgery less than 100 hours from the first symptoms. We will be eternally grateful to our friend Dr. Mikaela Baker and the State Department Medical Bureau for making this happen. (Pause to recognize the privilege -and risks- derived from serving our government overseas. Most in this situation would not be so fortunate to get access to this high-quality healthcare so quickly). 

The neurosurgeon resected a 2 cm hard tumor and 6 cm cystic mass from Isadora's right frontal lobe, the surgery was extensive but deemed a success: total resection and no extra damage to the brain. Isadora woke up grumpy, and hungry, but happy to see mama and nana (who arrived in DC just in time for the surgery), and she was thrilled once she could eat. She quickly started to recover and by the time we left the hospital, she was standing again. After a few days, Isadora started to walk in the hotel where we stayed for 6 weeks while she recovered. (Thank you to everyone who sent toys, food, and gifts to the hotel during that time, we are so grateful, especially to "Auntie" Clare and Aunt Karen who also came out to help and spend time with Isadora). David and our two other girls stayed in Tanzania until July to pack up and finish school/work, and by the time we were happily reunited, Isadora seemed "good as new". 

Based on the biopsy and genetic testing, Isadora's tumor was diagnosed as a Desmoplastic Infantile Ganglioma (DIG), a very rare low-grade glioma tumor that affects young children and babies, and is normally considered benign and unlikely to regrow. Without the mass, Isadora has an "empty" space in more than 1/4 of her brain, so she is at risk for brain injury, seizures, and developmental delays. However, we did not see any neurological symptoms or deficiencies either before or after the tumor.  

July-November 2021- New Normal 

Isadora continued to grow stronger and develop at an above average pace. Her school and sisters know to be extra careful with her "fragile" head, but other than that Isadora grew into a normal little toddler. We stayed in another Residence Inn for a few months and Isadora turned 1 year old there. Slowly, our family started to settle in and reacclimatize to life in the United States (still in pandemic mode). We purchased our first family home in Fairfax, VA, a new car, started new jobs, new preschool, and things were starting to seem really normal.  Until...

November 2021: 

The results of Isadora's regularly scheduled MRI check up in early November were a genuine shock to us, the doctors, and everyone involved in her care. Although a DIG is low-grade and, if resected, unlikely to grow back, and even less likely to spread- Isadora's did. The MRI shows several small legions, likely new tumors, around her brain including in places not accessible by surgery (like the brainstem). A week after this MRI, Isadora was scheduled to go for another scan to check her spine for tumors. That same morning she started to have a long and complex seizure, her first ever. We called 911 and within minutes the ambulance came (we conveniently bought a home within walking distance of the volunteer fire station, where David also volunteers). In the ambulance and at the ER, Isadora had a fever and was congested, and she had another big seizure in the ER and briefly stopped breathing. Once stabilized, we were transferred up to Children's National where Isadora's doctors are, she underwent a ton of tests and the ultimate conclusion was that there was no infection in her brain/spine, only a "common cold" with fever and congestion which triggered the seizures because her neuro history makes her more prone to seizures when the body is under stress. No one else in the family even had the sniffles. 

Isadora quickly recovered from her cold and the stress of the hospitalization, and was home by Thanksgiving evening (though we ate turkey a few days later). She looks and acts completely normal, and continues to be a quick, inquisitive, energetic, and hungry little babe who loves to snuggle. 

But...she still has cancer in her brain. Even in May, she had cancer, but we did not use this word with family and friends because it didn't feel like cancer. It was supposed to be a one and done tumor. We knew on some level that this was a possibility but honestly we were not prepared for it to come back or for the likelihood of chemotherapy. The doctors too are a bit confounded and not sure what chemo or treatment to use as this tumor so rarely (never?) spreads like this. 

On December 13, Isadora will go back for another brain surgery with the same surgeon and team at Children's National to remove a small tumor in the back of her brain, this will then be biopsied and hopefully give enough information to determine the best course of treatment. Likely, chemo. 

*need to update this for 2022/2023* -see CaringBridge.

Offers to help: 

We thank you all for your love, support, prayers, and generosity during this time. It is sometimes uncomfortable to accept help because we recognize that although Isadora's situation is rare and life-changing, we are still privileged in many ways to have access to great healthcare, adequate health insurance, and flexible work arrangements. Your well wishes, healing energy, and prayers are honestly enough to give. 

However,  if you are compelled to do more, our friend Clare has organized a meal train, linked here https://mealtrain.com/078g3z

THANK YOU for all your love and support and for reading this far. Writing this has actually been quite cathartic.