Abigaille D'Alimonte's Tribute Fund
Abigaille was like every other kid her age, full of energy and loved to dance. Abigaille met her milestones early on, it wasn't until early 2022, when Abigaille was 8 years old, that we started to notice some odd symptoms. They weren't the traditional symptoms often associated with brain tumors. Her wonderful teacher at school also noticed that Abigaille was struggling. We contacted her pediatrician and we began to investigate. Tests and bloodwork all came back normal. After a few months, we still had no answers. Abigaille had never had an issues with vision or hearing in the past, but we decided to double check things anyways.
The first stop was the optometrist. She discovered major swelling behind Abigaille's optic nerve. The optometrist sent us to the ophthalmologist the next day. They confirmed the swelling and told us to go home, pack our bags and head to our local hospital where a room would be ready and waiting for us. The next day, May 4th, Abigaille had her first MRI. We sat and anxiously waited for the results. A shortly while later, we knew it was not good news, as we watched a team of doctors walk to our room. They took us out of the room to talk away from Abigaille. They told us they found a tumor in Abigaille's brain. Our local hospital was unable to tell us anything other than that. They explained to us that we would be headed to the children's hospital 2 hours away in London.
We met Abigaille's wonderful neurosurgeon in London for the first time. They did another MRI and at first, from how the tumor looked on the MRI, they were hopeful that it would be a low grade tumor. She explained that she recommended they do a biopsy and see if there are any mutations that are present in Abigaille's tumor. We were told that it would take at least 4-6 weeks for results as they were sending the biopsy to Sick Kids in Toronto.
The first week after surgery Abigaille was right back to her normal self, we were sent home, and she even made it to her dance dress rehearsal just 10 days after surgery. Unfortunately, just a couple days later, Abby was unable to preform in her dance recital because she was quickly losing her ability to walk, talk and feed herself. We contacted Abigaille's medical team in London. They told us, that if Abby was able to make the car ride to London, they would have a room for us. We headed to the ER in London. It was noted that she again had massive swelling behind her optic nerve. We were sent for another scan. We received good news and bad news. The good news is that the tumor looked relatively stable. The bad news is that Abigaille had extensive hydrocephalus and needed a shunt put in that night. The shunt was placed that night and the next day she was up talking, walking with dome guidance and even fed herself cereal and milk with no help.
We were able to once again go home a couple days later. Abigaille was up and about, happy, and enjoying the summer with her friends. A couple weeks later we got the phone call from our amazing oncologist with results from the biopsy. The oncologist explained that Abigaille had a high grade tumor called diffuse midline glioma with a H3K27me3 mutation. She explained that most children with diagnosis don't live long enough to become an adult. It was devastating news. The oncologist explained that Abigaille's tumor also had a mutation called BRAFV600E. She explained that there is a combination medication that sometimes works very well on tumors with this mutation. With our oncologist help, Abigaille was approved for compassionate use of dabrafenib and trametinib. Abigaille's tumor remained stable for 2 years. In September 2022, she returned to school and was able to rejoin her dance classes.
In July 2024 Abigaille had her routine 3 month MRI. Shortly after we got the call from the oncologist. After 2 years of stability, part of Abigaille's tumor was showing signs of progression. The oncologist suggested that since Abigaille was having no symptoms, that we should wait and repeat the scan in 4-6 weeks. Abigaille showed no new symptoms whole we waited for the next MRI. Unfortunately, Abigaille's September 5th MRI showed that although the overall size of the tumor was stable, the area that showed progression had grown 5mm in 5 weeks. Abigaille's medical team is amazing and they came up with a treatment plan immediately. Abiagille needed 30 sessions of radiation starting October 2nd 2024.
Abigaille is over 2/3rd though her first session of radiation! We are currently staying at the Ronald McDonald House in London. Abigaille is a fighter. She has tolerated radiation incredibly so far. Abigaille has some minor symptoms, but she we well enough that we can return home on the weekends. Abigaille is even well enough to attend her 2 dance classes on the weekends when we return home at her wonderful dance studio that has welcomed her back with open arms.
After radiation Abiagille is excited to return home. As long as she is feeling well, Abigaille is excited to go back to school and see everyone. December 12th 2024, we will make a day trip up to London for an MRI to see the results from radiation. We are hoping for good news.
Thank you for choosing to donate to The Cure Starts Now Canada. 100% of this donation, after credit card processing fees, goes directly towards research to find the homerun cure for cancer starting with pediatric brain cancer research. If you would like to make a donation by mail, please send a check to: The Cure Starts Now Canada; 2595 Wilcox Terrace, Victoria, BC V8Z 7G5 and write in the memo, "Abigaille D'Alimonte’s Tribute Fund".