Today is the first day of brain cancer awareness month. On May 8th, it will be 9 months since Dylan was diagnosed with DIPG. In August, we were told that 9 months was the average survival time, but that wasn’t guaranteed, as many kids are not given even that much time. But here we are, and Dylan is stable for now. I just can’t rejoice or find comfort in her stability, as there is an ominous shadow always present. With it, this shadow carries a time bomb and I have no idea when it will go off.
The shadow is always looming and its intensity can vary. If I am fatigued, the shadow grows stronger and I’m extra teary and emotional. The shadow can creep in and steal the joy from any moment and it does not discriminate. Ball games, dinners out, any activity – it is there.
The shadow has ravaged my brain. I lack focus and haven’t been able to read a book since August. I’ve lost memories and most of my pharmacy knowledge. I struggle in conversations as the shadow creeps in and causes me to be distracted. When I’m left to myself, the shadow creeps into my thoughts and makes the constant pit in my stomach bigger.
The stress of the shadow has wrecked my body. It wakes me up during the night and is the first thing I think of in the morning. I feel haggard and old, as if I’ve aged 9 years in 9 months. My hormones are out of whack and I never truly feel like myself. I still wish we could wake up from this nightmare and life would go back to how it was.
Seeing pictures of myself, the shadow is always there in my eyes. Where there was once a spark, I now see a shadow, despite the smile on my face.
Thanks to the shadow, I have a difficult time interacting in groups and do best with one on one interactions. Exercise helps and walks are like therapy. Being able to talk and cry brings some relief. I fear the shadow will drive people away.
I have my best days when Dylan has her best days. When she’s having a great day, the shadow is small and I can laugh and enjoy myself with her. When she’s tired or off, the shadow causes fear to creep in and I can’t help but analyze her every movement.
I am terrified the shadow will permanently steal the joy from my life.
Despite the shadow, hope remains. I pray that everything we are doing is making a difference. Only time will tell. For now, I’m thankful for the days when the shadow is small and I get to genuinely laugh. I’m thankful for Dylan’s good days and that she still has her joy and sass. I’m thankful for the giant amount of support given to us and the many people always thinking and praying for us. And I continue to pray for a cure.