BY KERRI PADGETT

Powered by my child to Advocate for Families Now: My testimony in support of  S1138

On June 10, I joined a small group of pediatric palliative care professionals and

advocates to testify before the State on behalf of providing comprehensive palliative

care to ALL qualifying families in Massachusetts.

I really had no idea what I was really agreeing to or what I was going to say.

I spent my 20’s walking around Boston, yet never once had I walked up the steps of

the Capital building on Beacon Hill. As I hurried toward the shinning gold building at

the top of the hill, I was struck by the distance I had travelled. My time in this city

was once full of impulse, art, music, and the thrill of the experience— the naive bliss

of youth. Most of the time I don’t see myself as much different from that girl, but

today that girl felt like a stranger. Today I was here on a mission, with purpose and

conviction buttoned up and business casual.

I squeezed my way into the packed room already in session and spent most of the

day crouched down on the floor, amongst the other panelists, journalists and

activists there to present their particular issues. Panel after panel rose to the front

of the room to present their perspective on some of the most contentious public

health issues they hoped to regulate: radon in schools, the lead paint that still covers

our cities and poisons our children, regulation of abortion practice and crisis health

centers, and, last but not least, comprehensive access to pediatric palliative care for

qualifying families.

Everyone was given 3 minutes to testify followed by a period of questioning. I found

each person’s testimony moving and persuasive. We must fix these issues, I thought.

For example, increasing regulation on lead paint in homes where children live

seemed like a no brainer to me.  A pediatrician testified about what lead poisoning

looks like for the dozens of patients he encounters each year.  “This is an easy fix,” I

thought, until my local Worcester representative questioned the panel: “And how do

you propose we pay for the de-leading in an already struggling housing market?  If

this regulation is enacted without a clear financial plan, the only result we will see is

that landlords will no longer rent to families.” While there are many laws currently

in place to prevent this type of discrimination against families, her point was valid.

Each cause and plight, in the end, was reduced to one converging point: dollars and

cents.

I knew then that my testimony had to do two things:

(1) It had to illustrate, through my own story with my son, the real world need of

palliative care in our communities and connect with people who likely have

never had to even think about the realities associated with parenting a child

with a life limiting illness.

(2) It had to illustrate the far-reaching cost of NOT providing these services to

families in need.

My 3 minutes —

Hello.  My name is Kerri Padgett.

My son Kai was diagnosed with an inoperable brain tumor at 8 months old.

We were lucky to be living here in Massachusetts, within a few hours drive

of one of the leading pediatric cancer centers in the country. During Kai’s 16

months of treatment there we received wonderful medical and psychosocial

support surrounding his curative treatment -which included weekly

chemotherapy, PT, OT, speech & feeding, orientation & mobility, the list goes

on.

Kai was expected to be a long-term survivor.

We were also lucky to be introduced to a community based palliative

care program early in his diagnosis. I say lucky for a few reasons.

Many of our peers, cancer families whose children had a similar prognosis to

Kai’s, were not offered these supportive services until weeks before their

child’s death, if at all.

Imagine if you would, your child is diagnosed with cancer and no one is

talking to you about the possibility that they may not survive. No one is

listening when week after week you report that he is loosing function or

cannot eat or play as he once did. “He will make up for it once the treatment

is over.” We were told.

I assure you, in the middle of the night, when all is quiet; the thoughts of what

COULD happen will cross your mind.

As Kai’s curative treatment was failing him and his daily function was

decreasing as a result, it was our palliative specialists that helped me

navigate the thoughts I was having that no one else wanted to hear– I think

my son is dying.

When palliative care showed up at our door all those months earlier I had no

idea what the words palliative care meant or why we needed it. What I did

know is that whoever they were this social worker was willing to talk with

me about my late night fears, the things I was afraid to say out loud to anyone

else.  I knew they provided a team of specialists, in our home, who were there

to provide comfort and engagement for Kai on his sickest days. Some of my

most cherished memories are those moments of watching him sing to the

music or relax into his massage, at a time when he mostly slept and we

hardly left the house.

We were lucky to have a team focused on Kai’s quality of life in that moment,

as well as the long-term resiliency of each member of our family.  I would

later learn this is palliative care.

Without this support during Kai’s life, I would not be sitting in front of you

today. Our palliative providers encouraged us to find meaning in each day.

They saw what Kai could do and they helped me to learn the coping skills I

would need for what was to come.

Kai died 2 1/2 years ago just after his second birthday. His last months were

full of life and memories thanks to our palliative care team.  Through the

support we received at home I was able to advocate for our wishes and make

thoughtful care decisions for Kai’s life and death.

Because of this support I now, despite the outcome, I live with minimal

regret.

After Kai’s death I went back to school and now work full time in palliative

care to ensure that all families receive the support they need during the most

trying times of their lives.

I am here today to urge you to support this initiative. Palliative care is not a

service that can withstand a waitlist due to budget.  A waitlist for these

families can result in services becoming available too little too late. A lack of

services during this critical time can result in long lasting emotional, social

and economic affects for the entire family.

Please help support this bill and bring these vital services to the families who

need them today.

Thankfully, any gaps in my testimony were filled by the amazing panel of advocates

who sat beside me that day. People who have dedicated their lives to fighting for

families like mine, who read aloud the moving written testimony from families

currently in the program and some from those who are waiting. Thankfully my

fellow panelists were well versed in the facts and figures, the costs and benefits, the

politics, that I am just unable to absorb.

It was an inspiring and invigorating day that allowed me to bring Kai front and

center. Each time I am asked to lobby or advocate or share our story to help others I

approach the opportunity as if it is my job. I am thankful that Kai is the center of the

work I do and am grateful to have the opportunity to make his story and these

issues my life’s work.

In the few years that have passed, I have learned how to carry Kai with me while

also separating my personal story just enough to keep it from completely engulfing

my professional life. It is a skill I resisted shortly after his death, but a skill that has

gradually become another way of holding him close, sometimes just for me.

Still, each time I am passed that microphone and begin to speak those words—

“My name is Kerri. My son Kai was diagnosed with an inoperable brain tumor at 8

months old.”—no matter how many times I say it, there is that moment where it all

sneaks up on me, where I have to swallow hard to fight back the tears and I am

reminded that this is more than my life’s work, this is my life.