Hebrews 4:16 "Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need."
We wanted to give everyone an update on what has happened since our doctor appointment in Chicago on 2/10/23. After receiving news that Wayne's MRI was not clear, but had some cysts, blood, and some lit up areas, we had to wait on results from the perfusion MRI.
Unfortunately, we were not called on Monday and didn't receive a call from the doctor until Tuesday night while we were at a friend's house for dinner. The doctor told us that there wasn't enough definitive answers in the MRI and that we should return in 8 weeks for another MRI. He said that if Wayne's symptoms continue to deteriorate, we could call and arrange for an earlier examination.
About an hour after the phone call, we were sitting in the living room talking with our friends when Wayne started sounding like a stuck record. He couldn't get his sentence out and kept repeating the same thing. Then his seizure started. I always time them, to let the doctor know how long they last. This seizure lasted over 7 minutes long. I think the length was partly due to the fact that we did not have his clonazipan with us, which is the medicine we give him as he is having a seizure.
The terrifying thing about this seizure was how long the effects of the seizure lasted. Usually, Wayne pops back rather quickly from a seizure. He will be tired and may have some weakness, but this time, Wayne lost his ability to speak and control of his right side. After about a half hour, he still wasn't doing well and couldn't lift his arm. He could hardly speak a few words and was paralyzed on his entire right side. We decided that we needed to take him to the hospital to rule out a stroke.
Our friends graciously drove with us to the hospital and remained with us until I went home. Wayne was quickly checked in and they did a CT scan to make sure he didn't have a stroke. Once that was ruled out, they decided to keep him overnight for observation and to give him an MRI in the morning. When I left the hospital, about 4 hours after Wayne's seizure, he still couldn't lift his right arm and his hand was shriveled up and he couldn't move it. He also was struggling to speak. Not exactly the way you want to celebrate Valentines Day!
It was hard to leave Wayne, but I knew there was nothing I could for him overnight. The drive home was a very emotional one. I blared my praise music pouring out my heart to Jesus as I sobbed all the way home. I have friends whose husbands ended up with permanent paralysis from their brain cancer and also some whose husband's could't speak clearly. I prayed that it wasn't the time for that to happen, but I had no clue if the next day Wayne would still be in this paralyzed state.
Have you ever heard, "life must go on"? On Wednesday morning, Shan had an appointment at Shriners Hospital to be casted for the new prosthetic leg they are making him. I didn't want him to miss the appointment, so I found a way to work everything in. I took Shan to his appointment and then arranged for my sister, Sarah, to pick him up. She knows me all too well and showed up with a Starbucks chai tea and Dove chocolate. I was then able to move over to Baptist Hospital to see Wayne. When I arrived, Wayne was just getting ready to be transferred to get his MRI.
Hospitals are always a hurry up and then wait. This stay was no different. We finally heard from the neurologists. They wanted to change one of Wayne's medicines, but Wayne didn't want to change unless he talked with our neurologist in Chicago. Thankfully, she called us and let us know that she would not change the one medicine since her brain tumor patients don't respond as well on that medicine. I was so glad that Wayne spoke up to question what was being decided. It also allowed him to come home Wednesday night instead of having to stay another day at the hospital.
So where do we go from here? Pretty much, we don't know. We did ask to be seen in 4 weeks instead of 8. But as for surgery or anything more serious, we are on a pause. Supposedly, there isn't enough definitive material to warrant surgery at this point, and yet we also know whatever is there is causing irritation in Wayne's brain and causing the seizures. We feel like we talk in circles with the doctors. It is super frustrating and we just want answers. We understand that this cancer is difficult because it affects everyone differently, but it's hard when it's your loved one and you are just left hanging and waiting.
Meanwhile, we have canceled our camping trip to Gulf Shores since we ride bikes most of the time and Wayne shouldn't be on a bike. I also had to make the difficult decision to not travel to Florida in two weeks to volunteer with the Inheritance of Hope Retreat. I cannot take a chance of Wayne having a seizure like the one he just had while I'm gone. That would traumatize the kids! I know it traumatized me. So, we will make the most of our "staycation" and try to get some things done around the house. Once we have his next appointment scheduled, we are working on doing something memorable with the girls. I will keep you posted about that as we get closer. We are trying to be as intentional as we can with all the time we have. Tuesday was a reminder that at any time, things can quickly change for Wayne.
Thank you for all of your prayers and encouragement during this time! I apologize for not updating sooner. As you can imagine, my adrenaline and caffeine wore off and today I crashed. We will keep everyone updated as we learn more.
