Hope.
Did we say we love our community and supporters? Wow, you guys work fast. Please keep the prayers and support coming! As John said in his last update, we are seeking out the best treatment options and expert opinions available for Rucker. Our oncologists, family members, friends, (and friends of friends), coworkers, etc. immediately went to work on spreading the word about Rucker's case in hopes of finding an expert or study/trial that may help him. We even had oncologists from Japan weighing in! (Thank you Dr. Bruce Darden!) We are incredibly grateful to have such an amazing network behind us.
But, I have take a second to give the most credit to my husband John for the latest development. John spent countless hours at home last week in front of a computer researching and putting together a document outlining Rucker's case that would be circulated to every reputable institution and expert he could find. While he was down one of his many internet research rabbit holes, he came across a 2-minute youtube video which showcased a panel of oncologists discussing their opinions on immunotherapy for sarcomas. One of the panel members was an oncologist from Stanford, and her comments kept resonating with John. He watched the video several times and then decided it might be worth a shot to reach out to her. Our oncologist was able to find her contact information and John emailed her Rucker's story and asked her if she was someone who might be able to help us. We had no idea if she would respond. Then, on Friday night at 10:00 p.m. she sent a simple reply: "John, Thanks for sending me an email about your beautiful son. I talked to Dr. Sheri Spunt who is our expert pediatric sarcoma specialist. She will be contacting you soon."
Now, we had been seeing responses like this all week - we would make connections with several very reputable hospitals, and then they would refer us to an expert in their oncology department, and then for the most part we'd get a response like, "I'm sorry, this is a very difficult case. Unfortunately I don't know much about this cancer and agree with treatment under the standard protocol." So, when the Stanford doctor told John that she was referring us to their pediatric sarcoma expert, we figured we might be hitting another dead end. We put it in the back of our minds and focused on enjoying the weekend with our boys. Sidenote - it was a great weekend of bike riding, swimming and playing with friends and cousins!
On Saturday evening, while we were with friends at the pool, John received a phone call from a number he didn't recognize. On the other end was Dr. Sheri Spunt, the pediatric sarcoma expert from Stanford. And this phone discussion was like anything BUT what we had been hearing from the other doctors that week. Dr. Sheri Spunt is an expert in soft-tissue sarcomas and rare tumors in children, and research and experimental therapies in this area are her "passion." She immediately reeled off several thoughts and ideas to John about possible testing and treatment options for Rucker. She currently oversees many trials, some of which he may qualify for, and she is very knowledgeable about other promising immunotherapy trials across the country. When John got off the phone with her, it was the first time since we had received the latest news about Rucker that I saw HOPE in his eyes. This is exactly what we had been looking for. John texted our oncologist, Dr. Wadhwa, to tell him she would be reaching out. Dr. Wadhwa immediately called John and said this was fantastic news and he was happy to share Rucker's case with her. Since last Saturday, Dr. Spunt has been in contact with either John or Dr. Wadhwa almost every day.
And now we have a plan.
On Wednesday, 8/14, we are traveling to Stanford's children's hospital (in Palo Alto, CA), where Rucker will undergo surgery to remove the new tumors in his lungs. Dr. Spunt's surgeons reviewed Rucker's scans and believe the tumors are amenable to resection, likely thoracoscopically, which is less invasive and hopefully means he'll have a relatively quick recovery. The primary reason for the surgery is to get fresh tumor samples for RNA sequencing to more fully determine if there are any markers in the tumors that may allow for targeted medication. Test results may not come back for a few weeks, so there is an added benefit of having the tumors removed while we await the results and put a treatment plan in place.
It's a start and we have hope. Please pray for a successful surgery and quick recovery time so that Rucker can get back home and continue living his amazing life.
