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!

Update 6/19/23: Rollercoaster Ride

Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

Our crazy rollercoaster ride continues. We are enjoying finally all being home together. This morning, Naomi and Sophia arrived from Chicago. It seems like the older the kids get, the crazier our schedules get. Between the kid's work and their trips, it is hard to keep track of everyone. I think that we will have about two weeks together this summer. Abigail leaves tomorrow for a wedding in California, Naomi leaves for camp at the end of June, Sophia leaves for Hawk Mountain July 6th, and then Grace heads back to Michigan to serve at Life Action again on July 9th. Time seriously flies too quickly with kids.

The rollercoaster doesn't just apply to our kid's crazy schedules, but to Wayne's health. Yesterday, Wayne felt really well and did amazing at church and enjoyed his Father's Day. Today, Wayne woke up feeling weak and fatigued. We are hoping that he just did too much yesterday and wore himself out. I teased him at church that he was showing off for everyone. It was definitely one of his better days lately, but today we are paying for it. We struggle to make plans since we never know from day to day how Wayne will be feeling. We are just praying that the ups and downs will get better over time. We continue to wean Wayne off of his steroids. Tomorrow he will be down to 5mg from the 8mg he was on over a week ago. 

This sums up Wayne's Monday

Joella made a shirt for Wayne for Father's Day. She's so thoughtful.

Wayne's favorite pie is lemon meringue. I had to scour the internet for one of the ingredients since no stores carried it. Wayne's smile was worth all the effort.

There is never a dull moment in our house. On Friday afternoon, Wayne and I took Micaela to the orthodontist. While we were gone, our dog, Bo, managed to get his paws on a container of brownies. He consumed 44 brownies!! When we walked in the door, he marched right into his crate. I looked over and saw brownie crumbs and an empty container. I made a call to find out what to do, since dogs should not eat chocolate. I had to make him a concoction to drink to make him throw up. Poor thing was upset with me, but I was trying to save his life. He is finally feeling better this afternoon. This wasn't his first misfortune with food, and I'm sure it won't be his last. He never learns!

Look at those eyes. He was trying his puppy eyes on me, but it didn't work.

The kids had only eaten 4 brownies and he ate the rest.

Micaela and Joella are enjoying being back home. They have spent hours in the pool and have enjoyed local events, like the mobile book library. Wayne and I have enjoyed many hours on our deck reading in the beautiful weather. I was even brave enough to have Shan drive me today for his driving practice. Since everyone was used to doing their own thing, we had to have a family meeting and come up with a "motivational plan" for getting our chores done around the house. 

Prayer Requests:

- Please continue to pray for Wayne as he weans off of steroids and for his body to get stronger.

- Please pray for our kids as they all travel around.

Update 6/15/23: Changes

Ecclesiastes 3:1 "There is a time for everything, and a season for every activity under the heavens." 

Yesterday, Wayne finished his last radiation treatment! He was able to ring a gong to show he was done. This was a little cooler than just ringing a bell. I continue to hound him like a paparazzi. After we were done at Northwestern, we took the drive back to Beverly where we have been staying for the last two months. 

The mask that Wayne wore each time for radiation. It would snap his head to the table so he couldn't move. It is so accurate that he couldn't shave or cut his hair because the mask might become loose.

Last view home of the preparation for the Nascar street race (for my father'n'law who loves Nascar)

Goodbyes are so hard!! The Kreider family may not be related to us by blood, but there are our family. If you don't have a church in Chicago, I highly recommend checking out St. Paul's Bible Church in Beverly. You get the real deal there. From the solid, biblical preaching to the love you will experience from the congregation...you will experience Jesus. Jason and Sue live out the gospel in every area of their lives. They have blessed our family in unimaginable ways the last two months. Jason and Sue, we cannot begin to thank you for the love and support you have shown us not only the last two months, but over the years. We love you!!!

Today my kids are going through withdraws from seeing and being with their best friends non-stop for the last two months. I am going through a transition as well. Why is change always so hard?

On our way home, we made our traditional stop at Albanese to get candy for the drive home. 

Most of today was spent catching up around the house. I started by day by weeding a million weeds, which apparently teenagers don't "see", and cleaning the pool. We spent some time unpacking, making the house easier for Wayne to get around (he needs a little more space and clear walking paths), grocery shopping, and visiting with my parents. My dog hasn't left my side. I think he is glad to have me home and I'm glad to be back with him.

Speaking of change, Wayne has been experiencing a little of that. The damage from radiation was making his hair in one section fall out in handfuls yesterday. So, we took the clippers today and said farewell to all of his hair. He really is a trooper with all of this.

Transitioning from playing with their friends to each other.

My garden and flower seeds all grew significantly over the last month. I'm glad I made it home to enjoy the flowers!

An amazing lady from church blessed our family with a huge meal (it will probably feed us for at least four days). The body of Christ in Chicago and Winchester (plus all of you praying for us from everywhere else), has been unbelievable. You continue to love on us and pray for us. We appreciate each and every one of you!!

Prayer Requests:

- Pray for Wayne as we being to slowly taper his steroids. We are modifying the doctor's taper since this time they sped it up and normally they take it slower. We don't want to increase our chances of having Wayne react to the decrease, so we are taking it a little slower. We felt like they were setting us up for failure (jumping from 8mg to 4 mg at once). Instead, we are doing 7mg for 3 days, then 6, and so on. We will also be increasing his frankincense during this transition to help with any swelling. 

- We are going to be selling our property in Richmond that was set up to be used as a ministry to pastors. First of all, we have not experienced as much use from pastors as we had planned, so it has just been sitting many days not used. Secondly, it is a lot of work to keep up the 10 acres on top of everything else we have going on. A sweet friend has been helping us with mowing, but we have decided that it is just too much for us to maintain going forward. If you know someone who wants to build a house and needs a beautiful spot, let us know. There is a cute cottage on the property that can be lived in while a house is built. You can see pictures on our Airbnb listing.

- Pray for everyone as we transition to all these changes...regular chores (yes, mom is here to follow up), new routines, trying to figure out our new normal with Wayne, and so on. 

- Please also pray for Shan as his leg heals. He got a wound on his stub from his old prosthesis. I had them look at it when we got his new leg, but I found out last week that it still wasn't good and was getting worse. Thankfully, Abigail took him to the doctor for me. He had staff infection growing and they followed up with a wound doctor. Shan now has a plan to deal with the wound. His just really disappointed that he can't work for the next two weeks as he lets his leg heal. 

Update 6/13/23: One More Day

1 Chronicles 16:11 "Look to the Lord and His strength; seek His face always."

Wayne and I made the most of the weekend. We took it easy for the most part to help Wayne's body recover from treatment. Friday evening, Wayne stayed home and watched a movie with Naomi. The other kids went with our friend Jason to some baseball games. I took the time to meet up with my friend Maria. We took a nice walk/hike and were able to catch up on our crazy lives.

Above: Susan; Below: Maria

Saturday morning Wayne went out for breakfast with his friend Mike while I went for a massage. I also managed to quickly meet up with my friend Susan and snap a picture since we failed to do that on Thursday. Wayne enjoyed a nice long nap that afternoon and I watched the closing program that Micaela attended. (I’ll post pictures soon) She attended a retreat with girls her age from St. Paul's Bible Church. On the last day, they did a fashion show and the parents were able to attend. I cannot believe how old Micaela is getting!! My friend Faye stopped by to visit that afternoon. I’ve loved getting to see and catch up with so many of you!!

Sunday, Wayne and I watched church from home after not getting much sleep Saturday night. That was a rough night for Wayne. He was so weak, he could hardly sit up again. Thankfully, it got better as the day went on, but we didn't get much sleep that night. Our friends came over after church and brought us food from the church picnic. It was great catching up with them. 

Going to the mall with friends.

Naomi and Sophia spent the weekend with Meghan and her parents. They literally grew up together since we lived up the street from each other. These girls were always at each other's houses. Meghan is like another daughter to us.

Yesterday, after treatment, Wayne had to get his weekly blood draw. While waiting, we were able to meet up with another Inheritance of Hope family that is also being treated at Northwestern. It was great to hear some of his good news and see his son. I'm still hoping to catch up with Carrie one day for coffee! After Wayne's three hour nap, we went on a date. It was nice to get away and try to talk about other things besides treatment. I do have to admit that conversations are a lot harder these days with all of Wayne's communication issues. But, we made the most of it and enjoyed ourselves. 

Today, Wayne and I drove to La Grange to meet with his former boss from RSM for lunch. I forgot to snap a picture of this occasion. Wayne laughs at me when I take pictures. He said I'm like his paparazzi. I told him pictures make the blog updates more exciting then just a bunch of words. 

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We are down to one more day of radiation...which means one more trip to downtown Chicago. I have to admit that the city is very beautiful, I just don't miss the traffic. Wayne and I have been enjoying seeing the city preparer their first ever Nascar street race. We have tried to make the most of all these trips to the city. 

Last night was Wayne's last night of chemo and tomorrow at 10, Wayne will get his 15th and final radiation treatment. Wayne is seriously my hero. He has continued to push through all this hard and has looked to the Lord for his strength. 

We are still in limbo between the doctors. The radiologist is still convinced that Wayne's symptoms and need for the increase in steroids isn't from radiation, but from tumor progression/swelling. He explained in detail somethings about the cancer and steroids after we asked about a taper schedule. He said at a minimum, Wayne will be on them for at least 1-2 weeks before they would even consider it. But he is of the opinion that Wayne won't be able to taper because of the swelling and symptoms he has experienced. He also explained that it will take a few weeks for the treatment that he gave Wayne to start to attack the tumor. 

Meanwhile, the oncology team said they think it is seizures (without us seeing them). They want to raise Wayne's seizure medicine, even though he is on 3 medicines at super high levels (the max on two). They finally said today they want to do an EEG, but we are leaving tomorrow, so that isn't happening. Wayne is done with EEGs. He told me that he has done 3 of them and they all don't show seizure activity. He is a little frustrated, and so am I, that they just keep calling it seizures. They did that before and it was tumor growth. 

Wayne and I are considering writing a letter to our team and asking them some hard questions so we know how to prepare and what to expect coming up. We know there are so many unknowns for the doctors, but they also have been around this long enough to give us a few different outcomes/suggestions so we can discuss possible options for the future.

Please pray with us that God will make it clear what next steps we need to take. I told Wayne that sometimes I go back and forth in what we should and shouldn't do for treatment. Ultimately, it is up to Wayne since it is his body and health. He has always said that he wants quality over quantity. That is some of the questions we want to ask the doctors about future treatment options.

Wayne and I once again want to thank each and every one of you for your love, support and prayers for us. This has been a long journey so far, and you are keeping us going. Thank you for the texts and calls. Never worry about bugging us, we enjoy hearing from you and talking about other things besides cancer.