The CPN team and I have just released CPN’s 2025 Impact Report. Certainly we’re proud of it because we’re proud of the work, and it is filled with numbers indicating CPN’s growing reach and engagement with parents and clinicians. Numbers matter in impact reports because they measure progress and scale.
Numbers also matter when you’re measuring the passage of time, ticking off birthdays and anniversaries. Next month – May 9 – marks 25 years since my daughter Cameron died. This is a big number that hurts my head and my heart.
Numbers matter for what they measure, but they don’t hold any deep meaning on their own. The significance comes in the individual stories behind the numbers. Stories contain lots of meaning. And stories are a vehicle for understanding and healing.
So here is a CPN story that is more meaningful to me than all the data in our impact report.
In the fall of 2015, in Burlington Vermont, Sarah Casey and Steve Shaw received the fatal diagnosis of Gaucher Type 2 for their beautiful 8-month-old daughter Emerson Mary Shaw. Emerson’s primary care pediatrician was Dr. Meredith Monahan, who had actually been the chief resident at University of Vermont’s College of Medicine when Sarah’s sister-in-law, Dr. Alicia Casey, had been a younger resident at UVM (a detail that is relevant to this story, so hold on to it).
There was little to be done to meaningfully extend Emerson’s life, but Sarah and Steve could keep Emerson more comfortable through Enzyme Replacement Therapy, for which she would need a port. They traveled to Boston Children’s Hospital – where Dr. Alicia Casey was now an attending pulmonologist – for her niece’s port procedure. While there, Sarah and Steve met with the pediatric palliative care team and expressed how isolated and utterly alone they felt. The palliative care team referred them to Courageous Parents Network, which was only in its second year.
Reluctant at first to engage with CPN, Sarah quickly came to appreciate the multiple parent perspectives shown in CPN’s videos and blog posts, and how these parents gave language to what she and Steve were feeling. Sarah also participated in CPN’s pilot psycho-education series that psychologist Nancy Frumer-Styron was leading.
Back in Vermont, Sarah asked Emerson’s PCP Dr. Meredith Monahan for a referral to UVM’s palliative care pediatrician, Dr. Bob Macauley. Dr. Macauley had taught both Meredith and Alicia during their residencies. In conversations about decisions for medical interventions, Dr. Macauley helped Sarah and Steve understand that they could still be good parents if they focused entirely on Emerson’s quality of life rather than quantity of months.
Emerson died in June 2016 at age 16 months. While Sarah and Steve grieved deeply, they had no regrets.
Up to this point, I (Blyth, founder of CPN) had no idea of Emerson, Sarah or Steve. CPN does not ask parents to identify themselves to use its resources and engage with its programming. But shortly after Emerson’s death, Sarah sent me an email personally thanking CPN for the help we provided and including photos of Emerson. Reading Sarah’s words and seeing these photos of Emerson with her parents, I burst into tears. CPN was only two years old, and this was among the first direct feedback we had received – putting a face, and unmistakable imprint of parental love, on the impact we were having.
Several years later, I interviewed Sarah and Steve and Sarah’s mother Melissa for Courageous Parents Network, so that their story could help other families just as they had been helped. And shortly after that, I interviewed Dr. Macauley so that his wisdom as a palliative care provider would be available on the platform. We also did a book talk with him for his recent memoir, Because I Knew You.
Meanwhile, also unbeknownst to CPN, Dr. Alicia Casey – now director of the Interstitial Lung Disease Program and Pulmonary Fellowship Training Program at Boston Children’s Hospital – was referring families in her practice to Courageous Parents Network. One such family was Frank and Jeanette, whose son Frankie Jr. was one of her patients. I learned about this when dad Frank reached out by phone to thank CPN for helping him see that he was not alone. Naturally, I had to interview them for CPN, to meet Frankie and to share their courageous parenting with other parents. I came away changed – moved by Frankie’s gentle energy, Frank’s humility and Jeanette’s feisty advocacy.
By this time, at her own initiation, Sarah was organizing and directing CPN’s running and fundraising team for the famous Falmouth Road Race, one of the oldest races for non-profits, held each August. Sarah and Steve and Alicia run on Team CPN in memory of Emerson and to raise money in support of other families. And for the past two years, Alicia’s son Jeremiah – Emerson’s cousin – has run too. (Sarah is actively recruiting runners for our team this year.)
Last month, Dr. Alicia Casey celebrated a milestone birthday. As a surprise, her family asked that gifts be made to CPN in honor of Alicia’s work and Emerson’s memory. The combination of this spontaneous gesture and the significant amount of money raised again brought me to tears. Of the amount gifted and her sister-in-law, Sarah said, “this is a testament to how much Alicia is loved and to how much her community values her dedication to her patients and families.”
It is also a testament to Dr. Alicia Casey’s appreciation of the work of Courageous Parents Network to promote palliative care, to help parents see that they are not alone, and to orient and equip them as their child’s advocate. When I spoke with Alicia about how her friends and family gave in her honor, she reminded me that she had trained under Drs. Bob Macauley and Meredith Monahan. We noted what a small world it had become –in the best possible sense. Alicia said, “I trusted that Meredith and Bob and all the people who trained me would take good care of Emerson, Sarah and Steve. And that I could be Emerson’s aunt and Sarah and Steve’s sister-in-law.”
At least for now, this is where the story ends. Dr. Macauley instilled in Drs. Monahan and Casey the primary principles and values of palliative care. Dr. Monahan became a primary care pediatrician and Emerson became one of her patients. Dr. Casey, Emerson’s aunt, became a pediatric pulmonologist and refers patient families like Frank and Jeanette to Courageous Parents Network. And people in their orbit, their network, give to CPN as an act of respect and appreciation; and to keep the goodness flowing.
The numbers in CPN’s impact report capture an expanding reach and dedicated engagement. But, this specific story captures what the numbers cannot. The authentic, soft, heart-forward connections between individuals who share a love for child and family and a dedication to compassionate care, the impact of which ripples outward for decades.