Since 2015, the congregation of New Church Family has been praying for healing for Riley, now 9, a Jacksonville boy who has been receiving chemotherapy for an inoperable brain tumor. Riley Ruppert-Richendollar is the cousin of Pat Miller, a member of our congregation. We thank God that Riley’s condition has been stable in recent months, and he has been able to attend fourth grade, hang out with firefighters (some of his favorite adult buddies) and enjoy trips with his two dads, Scott & Robert. Here is a recent report from the dads:
In July 2016, Riley finished 52 weekly chemotherapy treatments and was happy to be done with them. He finished treatment on a Friday, and two days later, we had a big party for him at one of the local fire stations. Firehouse Subs donated food and we all had a good time. Afterward, Riley headed down to Camp Boggy Creek in Eustis for a week of vacation. Camp Boggy Creek is for children with life threatening illnesses. The kids get to stay there on their own and Riley was ready to start what he called "Getting My Life Back." While he was away, his grandfather Larry declined rapidly in health while under hospice care. When Riley returned from camp, we picked him up and rushed to see his grandfather one last time, but we did not make it in time. We had tried to prepare him as much as anyone could for the passing of a loved one, but, of course, it is never easy. What was to be the start of a celebration for Riley finishing treatment had a rough start.
We progressed through the summer with Riley attending summer camp and getting back into soccer. His doctors scheduled a surgery to remove his port at the end of August. The doctors assured us it would be a simple 45-minute operation -- one incision on his chest and the port would be out. Ninety minutes after surgery began, we started to get a little worried. Then the surgeon came out to talk with us. We found out that a small tube running from the port to a blood vessel had broken off and had entered the bloodstream. The doctor explained it would be OK if the tube made its way to his heart because the heart would simply pump it out the other end. But if it got lodged in his lung, that would be a problem. Several cardiologists and nurses were called in to assist. What was to have been a simple incision in his chest ended up with 6 more incisions as they tried to catch that tube. Riley came home with two incisions in his chest, two in his groin and two in his legs, where the tube was finally intercepted. We can't help but laugh about it now, but this complication was not on our radar by any means.
In the fall of 2016, Riley started 3rd grade and resumed playing soccer. Riley had an MRI done, showing his tumor remained stable. We all were happy to hear that news and we were set up for follow-up MRIs every 3 months. In September 2016, Scott's father, Roy, became ill in Fort Pierce, and his caregiver, son Roland, was struggling with inoperable liver cancer and going through a drug trial at the University of Miami. With Roland no longer able to care for Grandpa, who was struggling with dementia, we moved Roy to our home in Jacksonville with the help of Hospice Care. Riley was happy that Grandpa was home with us and was intrigued with all the medical equipment we now had on hand. For Thanksgiving, Roland came up to Jacksonville so we all could be together. We had a great Thanksgiving, and Dad had some moments of "clarity" as we called them, from time to time. Dad wanted to say grace at dinner on Thanksgiving day. We did not know how that was going to turn out, but he did a great job! Roland planned to return to Jacksonville a few weeks later for Christmas. By the time Roland returned at Christmas, our dad was no longer responsive to anyone. While we tried to make the best of it, dad's hospice nurse started to raise the warning flags. Roland returned to Fort Pierce after New Year’s Day, and Grandpa Ruppert passed away quietly at home with Riley, Robert, and Scott by his side on Jan. 14. Riley wanted to call out the time of death, because this is what firefighters and medics do when someone passes away. Riley wrote down the date and time. He then took a latex glove, stuffed it with tissues and gave it to Scott to dry his tears.
One week later, Scott was called down to his brother's house in Fort Pierce. Roland passed away at home on Jan. 29, 2017. Riley and Robert were also helping. When Riley's uncle passed away, Riley exclaimed "I am tired of all this death around us" Within a period of 6 months, Riley had lost 2 grandfathers and his uncle.
So when people say bad things happen in threes, maybe that was our three. After all the mayhem and sadness, we realized we needed to get back to Riley's "Getting My Life Back" mission. Riley was offered a "wish" from a local organization called Dreams Come True -- similar to Make a Wish. We all decided we wanted to wait until his treatment was over before taking a trip. With some delays along the way, we were finally able to make the arrangements. Riley wanted to go see Pearl Harbor, so that is what we did. Dreams Come True planned our trip for us and off we went to Hawaii.
The majority of our days there were spent at the base. We had guided tours of the memorials, and visited all of the museums. One day Riley got to spend the day with a Navy SEAL Team. They took him around showing us all the equipment they use and even let Riley try a few things. We were there during the commissioning of the USS John Finn, one of the Navy's newest destroyers. (You can Google USS John Finn on You Tube or the link is https://www.youtube.com/ watch?v=ZYSWlmmL29g) We were able to sit in the front row with all the brass. After the ceremony we got a personal tour inside. Every day was awesome!
When Dreams Come True was planning Riley's events on Pearl Harbor, one of the Navy SEALS helping to coordinate asked if Riley liked the CBS show “Hawaii Five- O.” Unbeknownst to the SEAL, this is Riley's favorite show. The Seal, a technical adviser to the show, asked if Riley would like to meet the stars of the show. So, just like that, we found ourselves on the set of the show as it was being filmed. We watched for about 3 hours while they filmed one scene over and over. The crew let Riley sit with them so he could understand what they were doing with sound, lighting, make up, etc. Later, during a break, Alex O'Loughlin - the main star - asked us to join him for lunch. Overall, it was just an incredible experience, truly a Dream Come True.
No sooner did we return home, to get some clean clothes, than we headed out to Camp Sunshine in Maine, another camp for children with life threatening illnesses. This camp is for the whole family, so we all got to go! In prior trips to Camp Sunshine, Riley befriended one his camp counselors, an exchange student from Thailand named Putt. The last time we were there, Putt explained to Riley that he had to return to Thailand and did not know when he would be able to come back to camp again. Of course Riley was sad, but we had been video chatting with Putt online since he returned to Thailand. Putt had contacted us letting us know that he had a chance to come back for the summer and wanted to know if we could make it to camp. We did not tell Riley, so it was a surprise to him when we arrived at camp and he saw his old friend Putt from Thailand! It is such a beautiful thing to see children happy and smiling, it makes your heart feel good!
In October we went to New York City for a couple days to visit Scott's lifelong friend who now lives there. We checked out two fire stations and we saw the play Willie Wonka. Scott's friend is the stylist for one of the actresses, so after the show we got a behind-the-scenes tour of the theater! Just the perfect getaway.
To bring 2017 to a close, we headed to Stuttgart, Germany, to celebrate Christmas with Scott’s relatives. Riley was concerned that Santa Claus wouldn’t be able to find him Christmas Eve, if he was not home in Jacksonville. We told him Santa can find you anywhere in the world. He was not disappointed. While in Germany we saw a couple of fire stations which made it even better for Riley.
So that is what we have been up to as we continue to work with Riley on "Getting His Life Back. Riley's health is "stable" at the moment. This is our new happy term, “stable.” His last MRI this month (February) was stable, so we are now getting scans less often -- every 4 months.
Every year, his team of doctors meets with us to go over his treatment plan. Even though his chemo is done, he is still not cancer-free. We met with the team in November. Riley will have more cognitive testing done soon to compare with results they obtained before his biopsy was done in June 2016.
He is having some issues at school. We don’t know if that is because he is a typical 9 year old now in 4th grade dealing with harder lessons, or if he might be suffering from "chemo brain," as some call it. The reality is that 75 percent of patients with the type of tumor that Riley has will require additional treatment at some time in their life. His tumor remains inoperable. Attempts to remove this type of tumor have less than a 1 percent survival rate. Proton therapy, somewhat like radiation, might be our next option, when and if it is needed. For now, we try to work with him on his school work while also taking into consideration other factors.
Last September, we decided after 23 years to close our business. Being a small-business owner was consuming a lot of our time. Now that Riley is for all intents and purposes healthy, we did not want to miss an opportunity to have quality time together.
Our family may have gotten smaller over the past couple of years, but our hearts remain full with love. It is with the support, prayers, and encouragement of folks like you that help us realize – that we are not in this alone. We are lucky to have this time together and work at making it the best of it.
Thank you again.
Sincerely, Scott Ruppert & Robert Richendollar