I hope you all enjoyed your Easter weekend! I owe you all a very overdue apology with being so bad at updating you on Ryan and his condition since the last entry in October. To be honest, for many months, things were going well. We were gifted a trip by Project Sol Flower to the F1 race in Austin, Texas and Ryan was able to go play golf at Frost Creek in Eagle with his best friend Michael, Toby and Ayden. On Christmas Eve we were also blessed with tickets to the Bronco game and Justin Simmons gave us a set of tickets to sit in the 3rd row, behind the players. It was all super memorable, with the exception of that sad loss. 😅

At the beginning of November, coinciding with Ryan's scans to check in on the progress of his treatment, he had some pretty significant pain in his left arm, near his shoulder. The pain lasted for about 5 days and then went away. They were concerned with the pain and when we did his scans in early November, it showed that all the initial Rhabdo cancer sites were gone, however, a new spot was showing up on the scans in the area he was having pain. Needless to say, all chemo had to stop until they could determine what it was. They scheduled a bone biopsy and on November 28th, we sadly found out that it was indeed a new tumor and he was taken off the study. We were devastated and it was hard to understand why if all the other initial areas were gone, how a new tumor could form. Stage 4 Rhabdo has a mind of its own. For the next two months until we could figure out what route to take, the silver lining was trying to enjoy the holidays, a trip to Austin for Ryan with his girlfriend Liddy and a trip to LA over New Years Eve to visit his friend Peyton. That trip though wasn't what it should have been because Ryan was in so much pain. When Ryan came back from Austin, he started having pretty bad bone pain and this lasted for weeks until he came back from LA. When he came back, someone suggested giving him a steroid to help with the bone pain and that helped immensely. We were definitely disappointed that it took so long for someone to recommend that as within hours, he was feeling better. 

On January 7th, Ryan had a new set of scans and sadly, the cancer had spread to most of his extremities and into his pelvic bone. On January 10th we started a new chemo treatment, really the most typical standard treatment for Rhabdo and it was an outpatient visit every three weeks followed by 5 days of oral chemo meds from home. Essentially treatment was every three weeks which was a nice break for Ryan to golf, take another trip to LA (a redo trip) and a trip to Florida to visit Papa with Toby. When they returned from Florida on March 5th, Ryan began to experience the most intense bone pain yet and when we went for chemo the next week, they determined his counts were too low to receive the current chemo regimen. After being admitted to the hospital in order to figure out a good pain plan, we are home and maintaining. 

Currently Ryan has tumors on his spine which have essentially made him immobile from the waist down. He does have a little feeling but cannot stand or walk at all. He has movement in his left arm but it's been really heartbreaking as all he hoped for was to play golf again. We did do some emergent radiation the last two weeks in the hopes of him regaining his mobility but unfortunately, it helped the pain, but not his mobility. 

Ryan would like to try and start some more radiation as well as another chemo pill from home so we will look into that however, the doctors haven't given him a good prognosis and so we are spending as much time with him as we can! 

We welcome your continued prayers even though it sometimes it feels like they go unheard. He told his Grammy last week when she said she wouldn't stop praying for him and he said, "Thank you Grammy, but it's not working." It's hard to see the "good" in this situation and I hate Rhabdo for what it's done to Ryan and everyone around us. It's unfair and I don't think we'll ever understand it on this side of eternity. Ryan is the most incredible young man and certainly didn't deserve this path in life. I ask that you pray for his heart and mind and for peace and comfort to envelop him each hour as this is more than any 23 year old deserves to be thinking about. 

We have also been gifted two tickets to Sunday's Masters in Augusta, GA on April 14th. It feels like a long shot but we are praying we can get him there and that we can potentially get one more ticket so Toby and I can be there with him and help him that day. It's all we have and it's Ryan's dream to go! 

We are so blessed to have you all on our team and praying for our family. We appreciate the texts and calls and please know if we don't get back to you right away, we are grateful and we love each of you! Many of you have asked how you can help and we may start a Go Fund Me in the next week as we have incurred many more expenses during this journey than we anticipated. If anyone has access to a third ticket to the Masters on that Sunday, that's our other ask. 

Thank you all and either I or one of my friends will be updating as we go...

Rachel