How did you find out about your child’s diagnosis? Tell us about your experience pre-diagnosis including symptoms and doctor’s visits.
In the spring of 2019 Annalise celebrated her 9th birthday. She had just finished a great year with school, basketball, softball and girl scouts. She completed 3rd grade and was moving up to a bigger school in the fall. As a family we were planning on moving into a bigger home for our bigger kids and getting our house ready to sell. Then, just a few weeks after completing third grade during our vacation at the Jersey Shore, Annalise vomited one night after dinner. It was June 27, 2019 and we figured that a stomach bug or perhaps heat stroke was to blame since she had exhibited some confusion as well. She vomited again the next day, so we took her to an Urgent Care and the doctor figured a virus was to blame, and we didn’t think much further. She felt a little better the next day and then started summer camp the next week. A week later she vomited again and had headaches. We went to the pediatrician, who thought it was constipation. Days later the ER told us it was back to back stomach viruses. By the end of July, the pediatrician told us blood work pointed to celiac disease and we were so happy to have a reason for the weekly vomiting. Over a matter of days Annalise began showing some new and alarming symptoms – double vision, a crooked smile, and then off balance walking with weakness on her left side. Aug 7, we called the GI doctor to ask if celiac could be the cause. The GI doctor told us to go directly to the ER, and several hours later, an MRI revealed the actual reason for her terrible summer–a brain tumor. My 9 yr old daughter had emergency brain surgery the next day to relieve the pressure in her head along with a biopsy of the tumor. About 5 days later, we sat in a conference room with our “team” who told us the devastating news: Annalise had a diffuse midline glioma tumor, positive for the highly aggressive H3K27 mutation and that our smart, funny, beautiful and sweet Annalise would only live 1-2 more years with treatment.
What did receiving the devastating news of your child’s serious illness feel like for your family?
I recall feeling like I was dying. Like my heart was breaking, but it was physical. I couldn’t stop crying, but I’d always hide that in front of Annalise. For our family it was like a bomb went off. Our amazing life was blown apart. We were shellshocked and everyone was completely devastated while also desperate to believe that we could find some experimental treatment that would save her or give her more time.
How did your child’s treatment progress? Describe one or two of the hardest moments. If you can, tell us a bit about their final days and end of life.
My daughter fought so hard. She spent 1 month in rehab to recover from her initial brain surgery and re-learned to walk, use her left hand and speak with emotion.
She completed 33 days of radiation therapy while also starting 4th grade at her new school. She gained 20lbs from the steroids, so some of her friends she knew for 4 years didn’t even recognize her in the school hallways. She still smiled and persevered. We never told her how deadly this tumor was.
Annalise started feeling a bit better by Oct 2019, making jokes, swinging a whiffle ball bat, jumping rope, and trick-or-treating with friends, despite still having to use a wheel chair for much of the night.
Her post-radiation MRI on Nov 11 revealed some shrinkage in the initial tumor, but a secondary tumor was beginning to grow. We were on the train on our way to NYU to meet about the ONC201 phase 1 trial, when our oncologist called and said this was progression and likely Annalise would not qualify for the trial. We were devastated, again. Annalise was feeling better, we had a Disney World trip planned, and we just couldn’t believe that we didn’t get any good news from the radiation treatment other than slight improvement in her symptoms. Annalise vomited again on Thanksgiving Day, and all the symptoms of progression presented themselves. She received ONC201 through expanded access and took her first dose on November 29, 2019.
Luckily, the vomiting subsided briefly so we had a nice Christmas and gave Annalise some smiles. On Dec 27, double vision started, followed by more vomiting, off-balance walking and headaches. Another MRI on Jan 2 revealed the secondary tumor progressed significantly. We were not ready to give up hope for ONC201, and proceeded with shunt surgery on January 10 followed by 10 days of radiation on the new tumor.
Meanwhile, Annalise’s health steadily declined in January and February. She wore an eye patch to help with double vision. She could not walk without help. Her short term memory was declining. Her voice slurred. She lost some executive functions so she did not laugh and hold conversations the way she used to. She became incontinent. She gained more weight from steroids and only wanted to eat. I searched her ever changing face for signs of my daughter.
On Feb 18, Annalise woke with a massive headache. I laid in bed with her, waiting for the Tylenol to help. We thought it was the typical morning headache, however it wasn’t. Later that morning, we took her to the ER. In the car, she kept saying “my head hurts bad” and started having involuntary movements. The next horrible 7 hours in the ER, we watched her endure so much pain and confusion. That day will haunt us forever. The CT scan revealed a brain bleed. Annalise finally fell asleep around 7 pm and didn’t wake up for 48 hours. She could no longer move, open her eyes or eat. She could barely speak if at all. She laid in a hospital bed for 8 days until she left her body on Feb 26, 2020, almost exactly 8 months from her first symptoms. On that day, without hesitation, we decided to donate her precious brain tissue to the Children’s Brain Tumor Network (CBTN) through the GIFT FROM A CHILD program. We have to believe some good can come from this and believe her brain tissue can help researchers find a cure.
What made your child unique? What were some of your child’s favorite things to do during treatment? Did they have heroes, sources of comfort & joy?
Annalise was the sun in our solar system. She was so sweet and kind but also a force of nature when it came to her joyful energy. She loved her family. She was the family party girl who always seemed to bring us all together. Even if that just meant having a dancing party in our kitchen.
Some of Annalise’s favorite things to do during treatment were plush crafts, watch movies, build Lego, play boardgames, card games, and collect Funko Pop figurines of her favorite Star Wars and Harry Potter characters.
How are you dealing with your grief? How are your surviving children or partner managing now? What are some of the things that help your family keep going?
Grief has changed everything about us. We are forever changed. Personally, I still feel broken. Heartbroken beyond anything I could have imagined.
Our son has adjusted well and he actively takes part in honoring Annalise. We honor Annalise every day. I say her name every day. I light a candle for her and as a family we hold a moment of daily silence for her. We have created a few memorial projects in her honor as well. We also work to raise funds for childhood cancer research in her name.
How has finding Rett’s Roost been helpful to you?
Rett’s Roost gave us our first chance to attend a grief retreat as a family. Due to covid we hadn’t had any in-person counseling or met other families who had been through this. Our retreat gave us the space to share, listen, remember, mourn, and honor Annalise along side other families. Although it was just a weekend it was a pivotal experience for our family and helped bring us together and I believe it made us stronger.
