Help Kathryn Continue Her Fight Against DIPG

Story

It has been 4 and a half years since we received the news that no family wants to hear. Kathryn’s diagnosis with a DIPG Tumor in her brain seemed dark and hopeless. DIPG is a rare and aggressive brain tumor with only 200–300 cases a year in US children that’s hard to access for biopsy or drug delivery due to its location. These tumors develop in the brain’s pons, which is the area that sends messages to the spinal cord and body, controlling important functions like heartbeat, breathing, sleeping, balance, and bladder control. As they grow, they put pressure on the brain and impact nerve function. Eventually those nerves effect the ability to breathe and maintain a heartbeat.

For a short period of time we lived in limbo, counting down the days we were told we had left with her.
12 months is what they told us, 2 of those spent waiting for ideas.
We spent the next 3 months in radiation therapy. This shrunk her tumor and made her eligible for a trial.
Over the next 7 months game plans were made, ideas brought up, MRI’s were closely monitored, and we had a table of oncologists all making a plan that we hoped would buy us one more day, or one more week, or if we were lucky one more year.

In January of 2022, 13 months after diagnosis and what seemed to be living on borrowed time, we had a plan. Kathryn will be attending a clinical trial in Seattle, Washington at Seattle Children’s Hospital.

This trial requires that Kathryn receives CAR T-Cell Immunotherapy every 28 days. This type of treatment uses Kathryns own cells, which a medically altered to recognize the not healthy brain tissue (Tumor) and attack it. These cells are directly re-introduced to her brain through an ommaya (catheter) that gives the doctors direct access to her brain.

For 41 treatments, we traveled from Jay VT to Seattle WA. We are there for 3-4 days, depending on the flights.

We are now in need of some more help.

In 2021, our friend’s family and community came together and helped us raise close to 40k to support through this. We have accessed Angel Flights, Reduced costs on hotels, and even searched high and low for ways to financially support this trial. We have written letters to airlines, we have access social supports from the hospital, we have overturned every stone. I don’t think any of us thought this would last 3 –4 years, especially when we were given 12 months.

At the tune of 1k a month, we travel to and from Seattle, trying to keep Kathryn’s life as close to what it should be. Keeping her in school and helping her maintain normalcy. As you can imagine, 41 treatments in, 6 weeks of radiation, 16 MRI visits to DHMC, Emergency stays in Boston and DHMC for Shunt replacements, malfunctions and scares, we are dwindling down on funding.

While I would love to believe our little family is not poor, we are not fortunate enough to have the flexibility to spend 12k a year on continuing this trial.

At this point, we have the resources to continue this through summer but come August we will be down to our last dollars.

As her parents, the choices are, to again ask for help from our community, which is hard to do, or stop attending the clinical trial that has been keeping our family whole.

As you can imagine, this is not a choice. Losing our daughter is not an option we have on the table.

So – from the corners of my heart, and from the deepest fears in my soul, I have to ask for help again.

If you can donate, we will be forever grateful. If you can’t, please share our story and help us in that way. We have no idea what this journey looks like, we have no idea what the timeline is or where this trial will take us, but we know for certain that we have Kathryn still because of it.

Organizers :

Heather McClure is organizing this fundraiser.