Harder Family

Harder Family

Thursday, February 16, 2023

Update: 2/16/23 "Memorable" Valentines

 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.

Saturday morning we binge watched "Pepe le Pew"

Joella decided to cheer for the Eagles just to spite Shan Chen, and she had this kazoo to blow each touch down.

Valentine Day date at Baptist Health

Shan getting casted for a new prothetic.

Wayne being evaluated by a million medical staff

Amazing treats - stress calories don't count right?

Last meal before being sprung from the hospital to go home!!

Friday, February 10, 2023

Update 2/10/23 - The Good, The Bad, and The Ugly

 Psalm 103:1 "Bless the Lord, o my soul, and all that is within me, bless His holy name."

Today is the day before the 8 year anniversary of Wayne's grand mal seizure that revealed a lemon size brain tumor that later was found to be terminal. God has graciously given us 8 long years with this diagnosis.

Unfortunately, today at Wayne's MRI, we were given some unpleasant news. Wayne's MRI shows lit up areas, including two cysts that are rapidly increasing with fluid. We have to wait until Monday to hear if this area has a blood supply. That simply means that if there is blood supply, there is an active tumor growing that they can't clearly see on the MRI. If there isn't blood supply, we still aren't out of the woods. We will have to repeat the MRI in 4-6 weeks to see how the cysts are growing and make sure there isn't tumor growth. With glioblastoma, things can rapidly change. 

With all of Wayne's recent seizures and other symptoms, we knew something was going on. Although this isn't the news we wanted, at least we know the source of the seizures and the weakness that Wayne has been experiencing on his right side. Even though you think that you are prepared to hear unpleasant news, nothing prepares you to receive bad news. My stomach has been in knots all day. It was hard to eat and focus on the long drive home. I am so thankful for my worship play list and a large chai tea that fueled the six hour drive home.

So where do we go from here? No matter the outcome on Monday's news, Wayne is most likely looking at brain surgery. They have to relieve the pressure of the cysts because they are putting pressure on his brain and causing weakness on his right side, along with the seizures. We would follow up with another MRI in 4-6 weeks and then make plans for surgery. If the news Monday reveals tumor, we would have surgery sooner. We will have to travel back to Chicago to meet with the surgeons and come up with a plan. Thankfully, Wayne's original surgeons are still at Northwestern. 

As you can imagine, our kids are a bit emotional. I think I am in survival mode and still running on adrenaline. I am sure in the next few days that this will all hit. The bottom line is that are we so thankful for all the extra time God has given us with Wayne. We have beat so many odds at this point. So, we have much to be thankful for. God has provided so much healing in my life from my past trauma that I am in a better place right now too and the kids have a great support network. We would still covet your prayers as we face the upcoming weeks. So much is unknown. We don't know what trips we will need to cancel or what life will look like a few months from now. Please pray for God's wisdom and guidance as we move forward.

Positive Highlights: homeschool is going well and Shan Chen passed his drivers permit test! Watch out on the roads for him.