Transplant Update

So sorry this update is a little late in coming. Ryan isn't feeling so good. And no, he hasn't started referring to himself in the third person (yet), this is Emily filling in again. Ryan thinks he'll dictate some at the end here. The transplant well smoothly for the most part. Jenny came in on Tuesday and Wednesday morning at 7am on an empty stomach. They poked I don't know how many holes in her arms. She'll have some fine bruises to show for all her trouble. They were able to avoid using a femoral artery to harvest the stem cells, which I know Jenny was really happy about. Jenny was pretty happy about most things the second day because they finally gave her the good pain meds. I felt so bad that she did the first day with no medication. Not cool. Since I don't know how to sufficiently thank Jenny for all she's done for us, I'm not even going to try. How's that for fair? Jenny knows how much we appreciate and love her, and we'll keep showing it year after year. That's a bit more fair. She's still very nauseated today. I'm hoping she can recover soon.

Ryan started receiving Jenny's stem cells about 6pm Wednesday night. We had one of our favorite nurses that night, John, who was very good to work with. Ryan started having a reaction about five minutes into it, but they backed way off on the rate they were putting the stem cells in and that helped. The rest of the transplant was uneventful, which we love. Call us boring, but we love ourselves an uneventful day. I believe Tim called me boring the other day. Hmmm. 

The day of transplant is officially day zero of the protocol. So now we're on day three. Ryan is not feeling good. The whole process of food is becoming too much for him. It hurts going in because his mouth and throat are getting more sore each day (thanks radiation!). Once the food hits his stomach, he struggles to keep it down. And then it goes right through him and is painful on the way out. I haven't managed to talk him into any food today. He dodges any questions I ask about his food intake yesterday. (I wasn't here yesterday- craziest day of work ever, but his brother Scott spent a lot of the day with him.) The doctor should come in to talk to us any time now, and I believe we'll talk about starting TPN (total parenteral nutrition, you can read more about it here: http://www.livestrong.com/article/374528-the-tpn-diet/). Other troubles are headache, body aches, ear ache, strong hiccups from the chemo, fatigue, (radiation and how hard it is to sleep in the hospital), etc. Ryan doesn't like to complain about all this, since it doesn't help. But that's the update. Even though he feels crappy, he is still working hard to stay positive, make jokes, and smiles (although they're sad smiles). I love him for trying.

Right now he's trying to distract himself from all that by playing Fallout. His mouth is getting sore enough that talking just makes things worse. But we've still talked this morning about this strange life. How beautiful and unique and fleeting it is. My grandpa died on Wednesday. I loved him very much. He gave me his books to borrow when I was young (The Wizard of Oz, The Great Brain, lots of Beatle Bailey comic books) and then gave me his Alfred Hitchcock videos to borrow when I was a teenager.  I loved his sense of humor, the gleeful look on his face when he would tease babies, the way he always called me "little one" even though I'm thirty-five now, hearing him read poems at family parties, and the way he loved his hobbies and knew how to share them with people. I will miss him very much. 

The boys have essentially moved in with Elliot and Jessica. They are surrounded by family and people that love them. That makes it a little easier to cope with not being their full-time mom right now. I can't actually talk about this right now. But I'm told they're doing alright. Thank you Jessica, Elliot, Mom, Dad, Bethanie, Lily, and Cameron- for spending time with them and loving them. We're going to get through this and pretty soon we can be at home again with our boys and have our family back together. 

So the plan for Ryan is: keep doing what we're doing until his counts come back up. That's easier said than done. His body will continue to deal with receiving Jenny's stem cells. The hope is that they can prevent acute GVHD and that Jenny's cells will slowly take up residence without Ryan's body freaking out completely. That is achieved by using Tacro (an immune system suppressant) and methotrexate (a chemo drug to beat Jenny's cells down some but not all the way). Don't quote me on any of this by any means. Read something on the internet and quote that- it will be more reliable. The doctors and nurses are watching out for signs of GVHD- it can affect any organ of the body but most often targets the digestive tract, the skin, etc. If that starts up, they'll combat it with steroids, which Ryan is understandably afraid of. Another danger is any kind of infection. The guess (although each person has a different experience) is that he'll feel worse and worse each day for a couple weeks, then hopefully things will level off and maybe even gradually improve. They're watching for signs that the stem cells have engrafted (that Jenny's cells have won this battle they're having with Ryan's remaining marrow and leukemia). We'll know that's happened once Ryan's bloodwork starts showing a rise in platelets, hematocrit, etc. That engraftment process can take up to day thirty. Until that time, Ryan's body can't produce it's own blood stuff, so he'll be getting transfusions whenever he gets too low. Blood stuff- so technical, huh? 

That's the update. Let me know if I missed anything big. I want to thank a few people that have helped this week- Jeff, Mitch, and my other friends at OrangeSoda, that have gone above and beyond for me and Ryan. I can't even thank them enough for being so supportive and concerned and kind. My sweet neighbors Julie and Debbie, that were weeding my flower beds when I left yesterday morning. Tim and Scott, for being true friends to Ryan. Buffy, for sparing Tim and sending him out and for being a true friend to me. Gavan and Amy, for being there for us and making me laugh. My family and Ryan's family- we love you forever. Melissa, for having Jonas over Wednesday night and taking his mind off things. For so many friends and family that have shown their love and concern for us through calls, letters, texts, comments on the blog, etc. It means everything to us.  

Okay, Kelli, one of our favorite PAs, just came in to go over things. They are going to start him on TPN and more IV fluids today. Mucositis is starting to develop, and since he's just starting into this process and it's still a long way down (in her words), there's no need to power through with the eating. It will hopefully help him get the calories he needs and decrease his pain. Kelli is awesome. She knows her stuff, she's a good listener, you can tell she cares, and she gives us a lot of good information. Ryan is really hopeful that TPN will solve some of the biggest problems he's facing right now. Looks like Ryan isn't going to dictate anything today. Maybe next time. Below, a picture of better days.