As August began, so did subtle changes in Piper’s symptoms. Walking became more difficult, and her right leg struggled to keep pace with her left. Although wobbly, she could still get around, which meant we still had to remind her to slow down. But each passing day brought more decline in balance. At this point, hand-holding is a necessity even short distances, and she is unable to stand or walk unassisted. No four-year-old takes losing their independence lightly, so after several weeks we found a reverse walker in her signature pink to bridge the gap.
Alongside Pip’s mobility concerns came changes to her speech. Words are becoming more labored, annunciation blurry. The mouth secretions we noticed in the days before her diagnosis have returned.
The changes we saw creeping in over the preceding weeks were confirmed in her recent MRI. Piper’s tumor is growing, and it is affecting her cerebellum.
The benefits gained from re-radiation lasted about three months – nearly the timeline it took to obtain ONC201. Fortunately, Piper was still permitted to begin the drug. ONC201 comes in the form of two white capsules that require a two hour fast before and after dosing. Piper started her first three-week cycle on Aug. 20. After nearly an hour of coaxing, she reluctantly swallowed the pills. The second week went similarly. This week, however, Piper was unable to keep the medicine down. Protocol does not allow for re-dosing, so we await the start of her second cycle, and hope it’s more successful. While we don’t know what benefit it will have at this stage, ONC201 represents something to hang hope on.
As our team put it: mobility and speech may be declining, but these are not vital functions. It is impossible to predict which of Piper’s abilities will be under attack next, or at what rate. Every tumor grows differently. We pray her breathing, heartrate, and swallowing hold steady and allow her to keep fighting.
Even so, continued fight comes at a cost. The extended use of Avastin has caused Piper’s blood pressure to rise. Her labs also indicate it is beginning to put strain on her kidneys. We have started her on blood pressure medicine and will continue to monitor these changes.
Like the choice to re-radiate, the benefits of using these drugs outweigh the risks. Let that sink in for a minute, or ten. We are willing to compromise aspects of her future health in the name of the greater good… an outcome where we can stabilize the cancer and extend her life. Conversations about long-term damage, or the struggles of survivorship, are heartbreakingly absent from our appointments.
Lately, right before Pip drifts off to sleep in our bed, she’ll whisper, “mama, hold my hand.” I’ll stop what I’m doing and just grab hold. I need her hand as much as she needs mine. My touch reassures her, her touch refocuses me. When we hold tight we are stronger, even on this unsteady ground.