I used to hate the wind. I would describe it as my least favorite weather element, totally lacking in virtue. It always seems to show up at inopportune times, like when you’re ready to play at a park, or happen to be wearing a skirt.  But now I draw new associations.  The wind has become Piper’s call, and the call of her steadfast warriors.

We are feeling a lot of things at 14 months post-diagnosis.  Grateful, of course, but it’s a complicated place to be. The word tentative has never felt so appropriate. The slightest change in Piper can send our minds on a downward spiral. Is that a new symptom? Was she doing that yesterday? Does she seem more tired to you? The reality is DIPG is a progressive disease.  At some point, the answer to all our fear-based questions will be yes.  We are relieved that Piper continues to fight, and still does so with joy, and with a wonderful quality of life. But while I’m thankful for the past 14 months, it will never be enough.  I want her to turn 5, then 6, then 96. I want her forever.  That is the miracle we pray for every day.

Like our state of mind, the wind is multifaceted too.  It can be as innocuous as a breeze, or suddenly transform once-invisible air into something powerful, noticeable. It can push great ships across even greater distances. It can move deserts, change climate patterns, and wear down mountains. Alone we may not have enough to make the whole world stop and address DIPG, but together our voices are commanding.

Last month we had the great honor of attending the International Symposium for Pediatric Neuro Oncology in Denver.  So many intelligent and accomplished doctors, nurses, and researchers in one spot.  It was inspiring to hear some of the latest discussion on DIPG.  But what was generally presented as a timeline for a treatment breakthrough is 10 years.  Statistically that means as many as 3,000 children will die from DIPG in the USA between now and when that illusive cure arrives. Think of how many voices will beg for hope between now and 2028?

Many have asked what comes next with Piper’s treatment. The answer is “not enough.”  It has been 95 days since she completed re-radiation, and 53 days since her last MRI. That means it has been 95+ days since we started talking to our medical team about ONC201, a new drug being developed to target the highly-aggressive K27M gene mutation that Piper and many DIPG patients carry. Likewise, it has been 53 days since we started the process to receive this drug on a compassionate-use basis. Our first attempt was denied with little explanation.  Our team then recommended we write a personal letter of appeal.  Thanks to Nelson and his law degree, we sent a 9-page letter considering and rejecting every possible reason for refusing to allow her to take the drug.  This time it was enough to get approval, however the process to actually obtain the drug can take as many as 4 additional weeks.  If all goes well, Piper will start taking the pill by the end of August.

ONC201 represents a glimmer of hope, but again, you can’t help but put this all into context. Should it take two months and an advanced degree to get a terminal child access to a drug that could help her? While 14 months of living with DIPG is better than 9 months (or less), it’s still a life interrupted and ultimately cut short – to the tune of ~78 years. Can you imagine if a food or manufactured product was causing this much hostile and unchecked harm to children? Do you think it would take decades to address and solve the problem?  Why should brain cancer be viewed differently?

Think of Piper when the wind is high and welcome its disruption. We need every voice. Every word builds momentum, and eventually it will be enough to change the pattern.

Words for the Wind, Part 2
by Theodore Roethke

The sun declares the earth;
The stones leap in the stream;
On a wide plain, beyond
The far stretch of a dream,
A field breaks like sea;
The wind’s white with her name,
And I walk with the wind.

The dove’s my will today.
She sways, half in the sun:
Rose, easy on a stem,
One with the sighing vine,
One to be merry with,
And pleased to meet the moon.
She likes wherever I am.

Passion’s enough to give
Shape to a random joy:
I cry delight: I know
The root, the core of a cry.
Swan-heart, arbutus-calm,
She moves when time is shy:
Love has a thing to do.

A fair thing grows more fair;
The green, the springing green
Makes an intenser day
Under the rising moon;
I smile, no mineral man;
I bear, but not alone,
The burden of this joy.