Our Story
Harlee is one of the sweetest, 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 surrounding 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 it her head hurt and 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! Worst words of our life! The only option was palliative radiation and we needed to be life flighted to Colorado since no where 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 continued to stay up beat, sweet, and caring throughout her entire treatment. She underwent 30 rounds of radiation 5/7/19-6/25/19! She went everyday, 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! On 7/11/19 the pediatric neurosurgeon in Kalispell completed brain surgery on our little girl and drained her cyst and placed an Ommya 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 out the tumor had shrunk substantially. YAY!!! 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 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 her 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 Iranitican! She takes each new punch in stride and smiles through most her days with intermittent and expected tears on occasion!
In April 2020 after 11 months of treatment, we made the horribly difficult decision to discontinue treatments and just keep her comfortable and loved at home with the help of hospice. She hated getting pokes and her quality of life had diminished greatly, so we made the decision to just snuggle her! No parent should ever have to make the decisions cancer parents have to.
We tried to find joy in each and everyday and spent every moment being appreciative of the time we have been given and continue to have with our precious baby girl! Some exciting things Harlee got 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 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 made 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! Harlee fought valiantly until the very end. On May 6th, 2020 just 4 days after turning 6 Harlee took her last breath here on Earth and her first breath in Heaven. She was completely surrounded by her family and more love than can be explained in words. Each day we grieve the loss of our precious baby girl! Life will never be the same but we rejoice she is no longer in pain and can run and play again.