Surrounding us is what can only be described as the greatest support system. Hope and prayer are given freely and appreciated deeply. Yet, it’s complicated. In the same breath, I feel like the luckiest mother and also the unluckiest mother ever. We have so much and so little, all at the same time. So much love, so few answers. So much will, so little control. We have experienced the best and the worst of this world.
The happiness that once came easy is now a decision we choose to make each day. Our lives have been turned upside down, kicked in the dirt, lifted back up, stretched thin, pieced back together, and so on. We have ups, we have downs. No two days are the same, and no single day is taken for granted.
We have met the uncertainty the only way we know how – with unwavering possibility, and a healthy dose of adventure. Since last June, we have made a grand tour of our home state of Colorado, taken a Wish Trip to Disney World, a special birthday trip to New York City, and up next: sunny San Diego, thanks to the wonderful people at Brave Young Hearts. This trip commemorates the nearly 10 months that Piper has fought DIPG – and fought hard.
We travel the week before Piper has her 5th MRI, just 42 days after her last scan. On March 5th, her MRI showed a stable tumor overall, but things can change very quickly with DIPG, especially at this stage. Piper’s pons was measuring about 1.5 mm larger than in December, but it also appeared less active. Because these tumors are diffuse and not solid, it’s incredibly difficult to gauge using imaging. The December MRI was also taken while Piper was on Avastin, a chemo drug that can alter MRI results, while the March scan was not. So, the hope is that the next scan will provide a better comparison and allow us to plan future treatment accordingly.
Piper knows she has “an ouchy in her head.” She understands it has caused the difficult changes in her body, and means she has to take pills every day, and visit the doctor so much. But she does not realize that we cannot yet cure DIPG. She believes she can do anything, and that anything is possible. I feel fiercely proud of the warrior we have raised, while simultaneously my heart aches for her. She believes the world is better than this.
Each day, and each new adventure, serves to remind us that life is amazing. This world is imperfect, it can be excruciating at times. As humans, we are easily distracted from what matters most, but together we can also make it better. We thank all the #WarriorsforPrincessPiper for being the good to balance the bad, and for recognizing that you have the power to use your voice for change. Special thanks to Roese Photography for your art and advocacy this month, and to The Cure Starts Now for featuring Piper’s story in your recent annual gala.
Your prayers and love have carried our family for 10 long months, and God willing, will continue to carry us indefinitely into Piper’s future.