Written by Harlee’s mom, Taylor Salmi
Harlee is one of the sweetest, most kind-hearted, and caring little girls we have ever known. She is our middle daughter sandwiched between an older sister and younger brother! She has always done anything to make others happy and help. 🙂 For Harlee’s 5th birthday, we had a birthday party like every other year! We were surrounded by family, love, and laughter!
Something was different though. We noticed Harlee was a little clumsy and was drooling. I kept brushing it off that day to her being tired and growing. However, the next day (5/4/19), she woke up and was unable to walk a straight line and then she said her head hurt. We decided she needed to go to the ER. After a long day of CT scans and an MRI, we were met in the room by a doctor who said something that changed our lives forever. “We found a mass on her brainstem!”
The doctor wrapped her arms around me for a hug. In that moment we knew it was bad but we still had no idea how bad! An hour later we were meeting with the on-call neurosurgeon who explained the scans. They told us it was inoperable and had a life expectancy of 6-9 months and was called DIPG. 😞 The only option was palliative radiation and we needed to be life-flighted to Colorado since nowhere in Montana offered this treatment! Our hearts were shattered and our lives turned upside down. How did our perfectly healthy, beautiful little girl become terminally ill seemingly overnight?
Harlee has continued to stay upbeat, sweet, and caring throughout her entire treatment. She underwent 30 rounds of radiation from 5/7/19 – 6/25/19. She went every day and laid on a table unsedated while they attacked her tumor with radiation! During this time a large cyst formed on her tumor which began to be problematic. She had significant swelling and dramatically increased symptoms and had also developed hydrocephalus [fluid accumulation in the brain or “water on the brain”].
On 7/11/19 the pediatric neurosurgeon in Kalispell completed brain surgery on our little girl and drained her cyst and placed an Ommaya reservoir so it could be drained in the future. The next couple weeks were pretty uneventful and on 8/6/19 we traveled back to Colorado where we got our MRI and found our the tumor had shrunk substantially. 🙂
At this appointment, we also enrolled in the ONC201 trial that was showing some promise for DIPG. Harlee took this drug in combination with Avastin until the end of September 2019. At that appointment and MRI, her tumor appeared to have shrunk even more and she was doing so well they stopped the Avastin. However, a couple of weeks after this we began seeing subtle symptoms again. We just kept doing the ONC201 and praying it was other things causing the appearance of symptoms. However, on November 14th we got even worse news than the original diagnosis: her tumor was already in progression and was already larger than at original diagnosis!
We were able to pull it together and make the decision to go to Seattle for a second and shorter 10-day stint of radiation to try and slow the progression in hopes to make it to a promising CAR-T trial that is set to be opening. Harlee is now trying a three-drug chemo combo of Temodar. Avastin, and irinotecan. She takes each new punch in stride and smiles through most of her days with intermittent and expected tears on occasion!
We try to find joy in each and every day and spend every moment being appreciative of the time we have been given and continue to have with our precious baby girl! Some exciting things Harlee has gotten to do are starting and attending Kindergarten until the beginning of October. Harlee had been so excited to get to go to school and we are grateful she was given that opportunity. She received a hot tub from Make A Wish Montana and we have enjoyed multiple swims a day, making memories and sharing laughs! We got to take a family vacation to Arizona filled with lots of swimming!
Harlee makes it so easy to remain thankful but also makes it incredibly difficult to accept and understand why this horrible disease strikes such innocent and wonderful little angels! At this time we are taking it a minute at a time and so grateful for the opportunity we have of spending lots of time loving each other and keeping Harlee as happy as possible while we fight this monster. Although Harlee can no longer walk and has lost complete use of her right arm, she continues to love playing Barbies, board games, coloring and painting, and other activities with her family. 🙂
Thank you Taylor for sharing your story. Sending love to Harlee, you and your family.
Sending love to your family. Thank you for sharing your story with all of us. ❤️