Update 3/30/23: Surgery Scheduled

 Isaiah 26:3-4 “You keep him in perfect peace whose mind is stayed on You, because he trusts in You. Trust in the Lord forever, for the Lord God is an everlasting rock.”

Today we had a Telehealth visit with Wayne’s surgeon from Northwestern Hospital in Chicago. He informed us that Wayne’s cancer has progressed and is in his motor cortex. So far the tumor is in the pre-cortex, but it I s getting really close to breaching his motor cortex, which means if we don’t deal with this as soon as possible, Wayne could lose permanent use of his right side. Within 15 minutes of the appointment, the surgeon’s nurse got back to us and Wayne is scheduled for 4/11 for surgery. We have no clue how long rehab will last after surgery. The surgeon hinted that since he is experiencing weakness already, recovery could last a long time and things may get worse before it gets better. Wayne is praying that they are able to get him into Shirley Ryan Ability Lab, where he did rehab last time. 

The surgeon said that the tumor will be sent off again to be analyzed. He said that the testing is more sophisticated now then it was 8 years ago. We should have a better idea what treatments may work once we get those results.

We have a few projects to finish up before this huge change in our lives. We are in the process of hanging support bars in the bathroom and making sure their is room for a wheelchair, if that is the end result after surgery. We are hoping and praying for the best, but preparing for the worst too. We are packing a bag for Wayne in rehab.

So what will the day look like? From the pre-op information we received, we will have to arrive at 5:30 for Wayne to get a new MRI. Since things change so rapidly with brain cancer, they have to see what changes may have taken place in the weeks between MRIs. Wayne’s surgery will probably take at least a few hours. Thankfully, it sounds like this time he will not have to be awake for surgery like he was last time. 

People have been asking what they can do and we would just appreciate prayers. Pray for the surgeon that they are able to get everything and that Wayne does not lose any function. Please also pray over travels to Chicago and for us as we will be apart while he is in rehabilitation. Finally, please pray that when we get the DNA results from the tumor biology that we have clear direction what our next steps should be. 

On our way home from Chicago on Saturday, we made a detour and visited DJ. We took tve kids to an amazing sweet shop on the way home. It was a long, emotional day, but we finally got home late Saturday night.

Shan’s promised 2nd trip to Culver’s. If you are keeping track, that is 4 trips to Culver’s for Shan in 8 days!!

My early Mother’s Day gift. We have been working hard on building raised garden beds. Shoveling all the dirt, sand, and mulch for these containers of as my workout for the day. 

My dad taught me what ratio of dirt, sand, mulch, and peet moss to use.

I took a mental health week off of school so I could get some projects done and spend some time at the gym. Working out hard is a way for me to process all the deep, hard emotions. Relaxing in the sauna afterward is a huge reward. My friend took the girls on Tuesday and did school with them. Friends like this is what is helping us navigate this difficult time.

I took Micaela and Joella to see a play about Harrier Tubman. This was a special time with them.

Two of my cadets. Shan is with Naomi at Liberty for a college visit. Being the sole driver the past two days is exhausting. 

Thank you again for all your prayers and support, especially in the weeks ahead. We have a huge mountain to navigate, but we have the best guide! 

Update 3/24/23: New News is Bad News

 2 Corinthians 4:16-18 "So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."

Today we were delivered devastating news. After 8 years of clear scans, the brain cancer is back. Technically, we have always known that there is never remission with brain cancer, but we have always had clear scans with no signs of current tumor activity. Wayne's last scan showed some suspicious material, but they were mainly concerned with the cysts. Todays scans showed active tumor activity (the lit up areas are bad). 

Wayne's oncologist has scheduled us to meet with the surgeon. We will wait to hear back from the surgeon's office early next week to schedule a second craniotomy surgery for Wayne. We are also sending Wayne's scan to Cleveland Clinic. We will find out what trials and treatments each hospital has available for us and we will make our move from there. We will be seeking God's guidance each step of the way. 

We had to make the difficult call to each of our kids, who aren't with us, to let them know the news. So far, they all seem to be handling the news okay. I think that is partly due to the fact that we have all suspected that something like this was going on and we've been preparing ourselves. But no matter how hard you try to prepare yourself, there is nothing like having that news delivered to you. 

While I was waiting for Wayne during his MRI, I worked on getting things ready for the Hope@Home retreat I am serving on for Inheritance of Hope. It was helpful to pray over other families facing the loss of a parent/spouse. It took my eyes off my own difficult circumstances. Unfortunately, I missed the first meeting tonight as we were processing everything. I had promised Joella to get her ears pierced after Wayne's appointment, which went longer than anticipated. God is always in the details. I think Joella and Micaela having their best friends with them was a great distraction. We went out for ice cream afterward at our old favorite ice cream shop in Chicago, Plush Horse. 

Not only has Micaela and Joella had their best friends to distract them, the previous plan was to bring Naomi and Sophia's best friend, Meghan, home with us. This will be a wonderful diversion for both of them as well.

 On the way home from Northwestern, Wayne told me that he wished someone would tell him, "Well, praise the Lord it's back!" I told him that was bizarre. He told me, "God is in control and we should just praise Him no matter what that brings. When I say I want to hear that, I mean that I want someone to express, 'Praise the Lord for another opportunity to show God's grace to others and share all that God is doing in my life.'" I'm not sure I am at that place yet. I'm not sure I want someone coming up to me and declaring, "Wow, praise the Lord that Wayne's cancer is back!"

So where do we go from here? Well, as Wayne said, we just move forward and trust God, no matter what the outcome. We will wait to hear from the surgeon's office this week and make plans for surgery with Wayne's original surgeon, which is the outcome Wayne was really hoping for in regards to surgery. He knew they did such a fabulous job before and he trusts them. Plus, Wayne had an amazing experience at RIC (not Shirley Ryan Ability Lab) for his rehabilitation. While making plans for surgery, we will be researching our options for treatments. Please pray with us that God will make these steps clear. He has already been so gracious to us and has opened doors and answered so many prayers. 

Thank you again to everyone walking along side us and lifting us up before God. Please just pray that God is glorified. To quote Wayne from 8 years ago, he wants God to be glorified either in his life or his death. We know one way or another, God will heal Wayne!

Update 3/23/23: Cleveland Clinic

Romans 8:28 "And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose."

It has been a few whirlwind days. As I mentioned in our last post, God opened the doors for us to see a doctor at Cleveland Clinic on Tuesday. The day started out very early. We got up at 4am and were on the road a little after 5am. It is about a 5.5 hour drive, but we wanted to build in some time for traffic and pit stops. Unfortunately, about an hour outside of Cleveland, we hit terrible traffic. There were two accidents that made traffic stop completely. It was terrible seeing our ETA increasing and inching closer to Wayne's appointment time. Thankfully, we arrived about 20 minutes before Wayne's appointment.

God works in such amazing ways and really cares about the details of our lives. Monday I was trying to work out the details of how we would keep Micaela and Joella busy while at Wayne's appointment in Cleveland. The hotel didn't have check-in until 3pm and we weren't sure what to do with them. We enticed Shan to come along by offering him two meals at Culvers, since that is his favorite place to eat. We figured at least he is 16 and could "babysit" them for us during the appointment. Instead of all the crazy scenarios I had been trying to figure out, God worked His own miracle out. My friend, Sarah, saw that I was coming to Cleveland and said that she wanted to drive and come see us. She drove over 3 hours to come see us! It was such a blessing to our family to have time with her and her daughters. The best part was that she was able to take the kids to the Cleveland Natural History Museum while we were at the appointment. It literally brings tears to my eyes to think about how much God loves us and takes care of us. I'm also beyond thankful for friends who are willing to go out of their way to love on us and care for us.

The appointment at Cleveland Clinic went well. We loved the doctor that we met with on Tuesday. He took his time to listen and ask questions. We were able to ask him some harder questions that others have avoided, such as, what could be causing these sudden changes and cysts in Wayne's brain. Not only did he answer questions, he offered us viable solutions and options to consider. We left the appointment with the following plan: we will forward the MRI from Northwestern tomorrow to Cleveland Clinic. The tumor board, which is comprised of about 60 different doctors ranging from neurologists, radiologists, oncologists, and surgeons, will look over and discuss Wayne's last two MRIs and come up with a plan for us. Lord willing, we should hear something by the end of next week from Cleveland Clinic about what steps they suggest next.

After Wayne's appointment at Cleveland, we went out to dinner and ice cream with my friend Sarah and her girls. After being up over 18 hours, sleep felt wonderful that night. We took our time heading to Chicago after such a long day. The girls were a little disappointed because they were losing time with their friends, but it all worked out. A large chai tea later, and we made it to Chicago. We enjoyed spending Wednesday night at our old church with friends.

Fun random fact: this is the 3rd time Shan has eaten Culvers in six days! He said he could eat there every day!

Thursday has been a nice, relaxing day. The kids have been enjoying time with their friends and I have been catching up with mine. 

Meanwhile, Wayne will have his MRI tomorrow morning at Northwestern and we will meet with his neuro-oncologist. I have some questions I want to ask him and we are hoping that he will be as transparent as the doctor at Cleveland. Ideally, Wayne would love to have the same surgeons operate on him again, since they did such a fabulous job. But at this time, we are just asking God to give us wisdom to know which way to proceed. Please pray with us that God gives us patience as we wait for answers and that He gives us clear direction for which way to proceed. 💖