We created this CaringBridge page to keep family and friends updated in one place, as our loved ones are spread across the world and across digital platforms. We welcome you all to reach out to us directly, of course, and know that we are reading your cards, messages, and voicemails with love and appreciation but might be delayed responding individually. Thank you to everyone for your outpouring of love, prayers, and generosity both during the May emergency and now. (Please NOTE that donations to “Tributes” are directly to Caring Bridge and not the family. To support Isadora and our related causes, see the bottom here or click on “ways to help”) If you made a tribute to Caringbridge, but meant to donate to the family, please call Caringbridge at 651-452-7940 and they will refund your donation).
Isadora's 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 easy going 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, the rest of the U.S. Embassy Tanzania Health Unit, and the State Department Medical Bureau (Jeremy Larson) 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, 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. She looks and acts completely normal, and continues to be a quick, inquisitive, energetic, and hungry little babe who loves to snuggle.
On December 13, Isadora had a second brain surgery Children's National to remove a small tumor in her cerebellum. The surgery was a mixed success. The tumor was too hard to safely remove all of it, there was enough to be biopsied. Initial pathology indicates that another DIG, without any targetable mutations. Though DIG rarely spreads, there are dozens of cases like Isa's and many responded to chemotherapy. On January 11, Isadora had a procedure to implant a port and started chemotherapy treatment, expected to last 72 weeks total. We are nervous, but optimistic that this treatment will succeed in stop the tumors' growth, and perhaps even shrink them. Chemotherapy is scary, particularly given where we are in the COVID pandemic, but we are doing our best to remain healthy and hopeful.
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 We also started a Go Fund Me
https://gofund.me/343ed269 with the intention to use the first $5,000 to start a fund at Children's National Hospital for others coming from overseas for care. Anything more than that, we would use for medical bills and other incidentals over the course of Isa's treatment.
State Department/OIG employees with annual leave to spare- Ann Marie is applying to qualify for leave donations, and David is looking at options for him as well. Most likely, mama will take off several months to stay with Isadora, especially as she is no longer cleared to go to childcare due to being immunocompromised (and the pandemic is still looming!).
If physical gifts are your love language, Isadora and mama both could use soft, cuddly clothes, socks, etc. for the hospital visit and chemo. We are also fans of snacks, mess-free coloring/painting, and other activities during doctors visits. Gift cards can be sent to tiliasfamilyshopping(at)gmail.com.
THANK YOU for all your love and support and for reading this far. Writing this has actually been quite cathartic.
