#RylandStrong War Chest

Dear Readers,

Thank you for taking the time to follow our journey, whether through Facebook or by visiting our Caring Bridge. Your interest in learning about our family and our son's battle with brain cancer (DMG) means the world to us, and we hope it gives you a sense that we are doing everything we can, to the best of our ability.

The day everything changed was two months ago, on July 21st, when we brought Ryland our 5-year-old, to the pediatrician due to some concerning symptoms: weakness on one side of his body, eye turns, and, as we later discovered, a sixth nerve palsy. At that time, I talked about being so uncertain of the future and focusing on doing the next right thing.

When Dr. Rumler explained that we would need to wait for pathology to confirm whether this was a high-grade or low-grade glioma, I asked for specific details. If it turned out to be a low-grade glioma, there was a possibility of survival into adulthood, providing us with more time. However, if the pathologist identified a high-grade glioma, we were told that the average time from diagnosis is only 11 months. Unfortunately, DMG is a high-grade glioma and our time with Ryland is precious. To be honest, we felt absolutely gutted by this diagnosis but have worked hard to fill ourselves up with love and fuel on the journey ahead. Each interaction, card, and visit with friends and neighbors like you has also been instrumental in giving us support to get through.

The word "Palliative" weighed heavily on my mind. Initially, I thought it meant better days and more time, but Lindsay had to correct me. If we wanted to extend Ryland's time, we would need to go beyond the standard of care, which includes radiation therapy. Ryland has only 10 more days of radiation therapy as of writing this journal.

When the doctors asked us what we wanted to do with this diagnosis, we were all in agreement. We would undergo radiation therapy and then explore our next steps. I can say with certainty that we are committed to pursuing clinical trials. The question became, how far were we willing to travel? The answer was clear: we would go to anywhere if it meant a chance to fight for Ryland and give him more time or even a chance for a cure.

The CureStartsNow database and our own Dr. provided us with a list of numerous trials, but the sheer amount of medical jargon made it difficult for us to comprehend. Some trials required specific pathology work from the biopsy Ryland had undergone. Because of the cutting-edge nature of medicine and science, many are only in Phase 1, focused on determining the right dosage. Additionally, some trials had age cutoffs that might prevent a 5-year-old from participating.

Since then, we've had several conversations with Dr. Rumler, and we've narrowed down our top choices to the following options:

While we cannot definitively say which trial we will ultimately choose, Linsday and I are hopeful that we will be getting Ryland into the trial at Seattle which finished Phase 1 and is enrolling new patients. We are certain that we are going to battle this tumor with all our might, and Ryland is a DIPG Warrior (DIPG / DMG). To help our family navigate this challenging journey, we will utilize all available resources and gratefully accept any support you may wish to provide.

After careful consideration, we've set up a GoFundMe page, which is linked in the "ways to help" section. We kindly request that when you contribute, you do so thoughtfully, without imposing financial hardship on yourself or your family. This decision was made after consulting with many professionals who encouraged us to accept support and provide a means for people to help. Your assistance will be used to cover travel expenses, and medical bills, and prepare for potential lost wages when Jeremy's sick leave banks run out. Unfortunately, these concerns come with the responsibility of running our household. Reaching our goal will enable us to wholeheartedly say "yes" and keep our family together while we pursue the best care for our son.

You can assist us in building our #CancerSucks War Chest in the following ways:

We will take you with us every step of the way, sharing both our smiles and our challenges. Thank you for your unwavering support.

Sincerely,

The Kautz Family ~ Jeremy, Lindsay, Ryland & Felicity