Update 6/26/23: Detrimental Dexamethasone Drop

Psalm 9:9-10 "The Lord is a stronghold for the oppressed, a stronghold in times of trouble. And those who know Your name put their trust in You. Sing praises to the Lord, who sits enthroned in Zion!"

I realized that I have been negligent in updating everyone on Wayne. It seems like each evening I sit down to write an update, I am just so worn out, I don't even have the energy to write words down. 

On Sunday at church, we sang the song "Same God". One of the verses talks about David and how he faced Goliath. The song states that we may not fight Goliath, but we each face our own giants. I don't know what giant you are facing, but I do know that no matter how huge and impossible it seems, you can trust God with it. 

Wayne's giant right now is facing the nasty side effects of dropping the amount of dexamethasone he is taking. We are using CBD/CBG, boswellia, and frankincense essential oils to help offset the effects, but it has taken a toll. Even though we have slowly decreased his steroids over the last two weeks, Wayne's right side continues to be weak and many times, he struggles to communicate clearly. Another recent development is an increase in hand tremoring. It started on his right side, and now both hands tremor, especially at the end of the day. It is hard to watch Wayne struggle to do basic things, like using utensils to eat or climbing into bed.

Wayne is still trying to figure out how to balance pushing himself, without pushing himself too hard and being worn out all day. He has been trying to take time each day to do some PT. Many days after doing morning activities, Wayne has to lay down for a nap. Sometimes, he is so worn out he takes two naps. He told me today that we need to slow down the dexamethasone decrease because it is causing some detrimental side effects. He wants to give his body some more time to adjust to the lower levels of steroids. Thankfully, we successfully have lowered him from 8mg down to 4mg. The next drops will be the hardest to make it through. Many people with GBM have a difficult time getting off of the steroids because of the swelling in the brain. We are praying that the supplements we are using will help counter that and allow him to decreased completely. 

Filling Wayne's pills each week takes a lot of concentration. As you can see, he is taking a lot of pills between supplements and prescription medicines. 

Today we reached out to a local therapy company for Wayne to receive speech, OT, and PT. My schedule is going to get more complicated once we get that schedule since I will be driving to Lexington each time. But whatever I can do to help Wayne be as successful as possible, I will do. We discussed today about marriage vows. I think many of us say "in sickness or in health" without really thinking about what that may mean. I am so thankful for all the wonderful years Wayne and I have had to grow out love and commitment before we had to go through this difficult time. Although our marriage looks different right now, our love for each other is just as strong. I would and will do anything for Wayne and I know that he feels the same way. 

In the midst of all the hard, Wayne continues to try to make the best of it. We also continue to strive to make fun memories with the kids. This week, I took the kids bowling. A local bowling alley offers free bowling to kids 15 and under, so I signed them up. For $30 more, I was able to add the family. So we will be making some more trips to Richmond to bowl. Shan Chen is my hero. He cannot wear his prosthetic right now and is on crutches. I asked him if he wanted to stay home with Wayne, and he said no. He said he could bowl! It was amazing to watch. He would hop with the ball to the lane and throw the ball. About halfway through, he started hopping to the lane and then would kneel and still manage to knock down the pins. Thankfully, his leg is healing beautifully and it should be ready for his prosthetic in the next week or so.

We also celebrated Joella’s 11th birthday! I cannot believe my baby is 11. She’s been such an extra blessing going above and beyond lately. She helped me clean the pool the other day before she went swimming.

I continue to do my best to spend some time on self care. I have been taking advantage of the beautiful weather and our deck to read books. I also have been trying to go to the gym and work out some of the stress. My favorite thing to do is end my workout in the sauna!

My flower garden is doing great and my vegetables are coming along. It isn't doing too bad for being planted late.

Bo is glad to have me home. He doesn't leave my side.

Last night, we had a tornado warning so we ended up having a "party" in the basement. 

Prayer Requests:

- Please continue to pray for Wayne as we slowly taper his steroids. Pray that we figure out the source of the tremors and that God continues to give me patience and strength to handle all the new things each day that we face.

- Please also continue to pray for our kids as they balance work, relationships, and all the stress and emotions that come with all that we are dealing with. 

I cannot thank you enough for all of your prayers on our behalf! We love and appreciate all of you!