Super Ryan

I am so glad to see Saturday come. Ryan and I are home until he feels like going to watch the kids swim-if he does. He is back asleep, but that is probably due to the new appetite stimulant we've just started. I took him to the clinic on Thursday and he weighed 41 pounds. He got blood and platelets. Yesterday was field day at his school and it was very hard to watch all his friends running around playing and know he wasn't able. School doesn't get out until this Friday. It has gone on way too long. Ryan started complaining of pain in his chest yesterday when he swallows. If this continues through the weekend, we'll be contacting Dr. Sholler on Monday. Please pray for his pain to improve. We're going to try and distract him today with the museum movie. He has been talking about going to see that, but he wants all of us to go. And so we will! Love, Les, Missy, Heidi, Will, and SuperRyan

Ryan and Les made it home yesterday around 5ish. He was able to get his blood and platelets and take care of the planned office visit from the comfort of the Aflac floor. He got a couple of stitches to close up his forehead. He said this morning he got the best night's sleep last night in his own bed. Thanks to Smith and Julie for coming down to the hospital and then coming out to the house and making our dinner. We're looking forward to another visit at the lake tomorrow. We had Ryan's favorite- a bonfire, last night. Thanks to the Vickery's, the Stapleton's, and Karen and Jackson for coming out to hang around the old campfire. It was like old times, almost. Thanks to so many for your prayers for the guys, too. Ryan is feeling so much better! Love, Les, Missy, Heidi, Will, and SuperRyan

Ryan was quite a mess by the time we made it down to Scottish. There was blood all through his hair and face. His shirt was soaked. All of that from a tiny cut taking two stitches to close. The best news was that the CT scan was clear for any bleeding on his brain. We will be getting platelets first then a couple units of blood as he was down in the 4's for hemoglobin.
We are certainly hoping that this will not become a standard reaction to this treatment. We are hoping to be out tomorrow. Les, Missy, Heidi, Will and SuperRyan

Ryan had a pretty listless day. I'm sure his hemoglobin is low, but he has an appt. tomorrow at the clinic. I'm surprised his mouth hasn't been bleeding. That is our usual sign that he needs platelets. Anyway, I'm updating tonight to ask for prayers for Ryan and Les. For safe travels to SR, they've been gone about 20 minutes, for Ryan's head to stop bleeding, and for him to sleep quietly all night, and hey, throw one in for Les' nerves. He wouldn't let me go with him. We both knew I needed to stay here with Heidi and Will. They were traumatized seeing him have a seizure, and then there was a lot of blood. I know this update doesn't make any sense. It's all over the place. Ryan didn't sleep hardly at all last night, and Les went and laid down with him in his bed. Les had been back in the living room about 15 mins when we heard a loud noise. Will was the first one to him and he was in the floor, blood on his head, having a seizure. We all went him and talked him through it and got cold, wet cloths for his head. We couldn't get it to stop after about 15 minutes so Les put him in the car and took him down. I hope that explains our prayer request tonight. This is one side effect of the Nifurtimox. I'll update when I get more information. Thank ya'll so much your love and prayers for Ryan and Les. We love ya'll. Les, Missy, Heidi, Will, and Ryan PS I've been wanting to update to thank my friend Carla, and her neighbor and friend who owns Franklin Gun Shop. She came by earlier this week with a cap, a t-shirt, and a few air-soft/b-b guns. Thank ya'll so very much!!!

Missy spent last night in the hospital after having some blood work done and realizing her hemo was extremely low. They are finishing up her 3 units of blood and she should be checking out later this afternoon. She needs an energy boost as I will be in Columbus Ga with Will at the state soccer tournament Saturday and Sunday. Tonight we are headed to our county's Relay For Life event. Ryan is not selling Lemonade this year but he will be spending some cold hard cash with Heidi and Will ! They always have a good time with all their friends at Relay.
We had Ryan's weekly check-up at Scottish this morning. He is doing very well. Stephanie hooked him up with a "to-go" care package of a 5/8" x 22 port needle, Ryan's "special" port dressing, and hot packs, so when I convince him he has to go back to Vermont, we'll be ready! Thanks Steph! He was sure happy to see Dr. George also. Here's praying for an uneventful weekend (except for our team winning state!) Les, Missy, Heidi, Will and SuperRyan

Ryan has been off of the Fentanyl and Morphine since Saturday. On Monday he started feeling slight effects of being off of the 24/7 pain killers. But yesterday the side effects really set in. Every 45min to an hour, he falls into an absolute pit of darkness for about 15min. He seems to for get who is and exactly where he's at. He becomes extremely emotional, sobbing and wanting us all to hold him at the same time. His balance disappears. He did not go to sleep at all Monday night but he did sleep a straight 5 hours last night. We are praying desperately that this torment that is tearing at his mind will begin to subside as soon as possible. It is heart breaking to watch. He gets so scared. He knows when it's just about to start and then falls over the edge and into a completely different state on mind.
But on the positive side...I just can't believe how quickly we were able to eliminate the pain medicine after starting the Nifurtimox. He has had no sign of the pain that was virtually disabling just last week ! It is just amazing. We will keep him on this program and slowly convince him he has to return to Vermont in a few weeks. Once he is feeling better, that shouldn't be too difficult. Please keep Ryan and Missy in your thoughts and prayers. Sincerely, Les, Missy, Heidi, Will and SuperRyan

Ryan called Missy first thing this morning to wish her a Happy Mothers Day. He really misses her. Just 2 more days !
We were getting ready to head out for breakfast when Ryan caught a glimpse of all his pills lined up as usual and burst into tears. He told me his life is crappy, it's all hospitals and pills. He has been fighting this for half his life. He feels shaky inside, anxious. So we rocked and talked for a while, tears still streaming down his cheeks. Then I realized that his 3 day Fentanyl is out and he is in withdrawals ! It has happened once before. We decided not to put a new one on and try to stay busy to hopefully keep his mind off of it. I already see a noticeable dip in his leg pain ! If we can stay off the Fentanyl, the next step is to eliminate the Morphine. That would be awesome. Narcotics quite simply change a persons character. I think the Nifurtimox is somewhat similar (neurologically) but at the moment it just feels to me, and Ryan, we're piling on the meds.
We just want to see him happy and healthy once again. With God's good grace along with caring Doctors with new medicine, we might just get there. That will be a great day.
So hears to mothers (and fathers) who are fortunate enough to have been given the responsibility to look after the most precious gift we have been given. Happy Mothers Day. Les, Missy, Heidi, Will and SuperRyan

One of Missy's friends shot us an email this morning. This is a good sign !

"I was a bit skeptical in January b/c Jack had a lot of disease at that point, but the Nifurtimox in conjunction w/ chemo has almost cleared him completely and he is pain free and off all pain meds!"

We are praying that we have similar results with Ryan, please join us.
Les, Missy, Heidi, Will and SuperRyan