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.

Update (1/11/23)

Exodus 34:6 "The Lord, the Lord God, merciful and gracious, long-suffering, and abounding in goodness and truth."

I decided it was time to give everyone an update on Wayne. We have received numerous texts and emails. It is hard to respond to everyone and so if we missed you, it wasn't intentional. 

We had a wonderful and relaxing Christmas Day as a family. The next day (26th), the girl's friend from Chicago came and visited us for the week. Meghan is like our 7th daughter. We have known her almost her whole life and she holds a special place in our hearts. Everyone enjoyed spending time with her.

On the 27th, we took Sophia to her Civil Air Patrol event. She was selected to serve as staff at winter encampment. Unfortunately, we hit a few snags getting her to this event. We had dropped her uniform off at the dry cleaners and we were supposed to pick it up on Friday (23rd). Then that crazy winter storm hit and shut our town down. We were unable to pick it up and they were closed until Tuesday for Christmas. We were hopeful that we could get her uniform Tuesday morning at 7am before we drove to Lexington. For some unknown reason, they did not open in time and Sophia had to board her van for encampment without her blues uniform. Sophia was slightly stressed throughout the week contemplating what she would do in case her blues didn't arrive in time in the Civil Air Patrol van that would pick up the cadets. We prayed with her and encouraged her to trust God with all the details. It came down to the wire, but 20 minutes before the closing graduation ceremony, Sophia's uniform arrived! God is good!! Sophia did amazing at encampment. She ended up receiving Honor Flight where she received two challenge coins.

December 28th, our family took a trip to Cincinnati to visit the Cincinnati Zoo and see the lights. We had a lot of fun making memories, even if our car battery died while we were at the zoo. Never a dull moment...

On December 29th, Wayne and I traveled December to Chicago to meet with a specialist from Northwestern Hospital. We were super impressed with the doctor. She spent a lot of time with us and really listened. She was also able to answer some of Wayne's concerns about some of the medication he is on. We left the appointment with a treatment plan, but no clear answers to what has caused the increase in seizures. We enjoyed spending the night with friends in Chicago and left for KY early the next morning. 

December 30th, our friends from Chicago came to spend New Years weekend with us. The kids loved having their friends around for the weekend. Before our friends arrived, we worked on cleaning out our travel trailer to sell it. Abigail came out to help us and she slipped down the ramp and ended up breaking her ankle. She now is in a cast for a month and will have to follow up with an orthopedic doctor in Lynchburg. 

December 31st, less then 24 hours after that event, Naomi was with Meghan at a trampoline park and she pulled tendons in her foot. She is now in a boot for a month. It has felt like a never ending cycle of craziness hitting out family. But throughout all of this, we have felt peace in the midst of the chaos. 

For Christmas, Abigail gifted me tickets to see Anastasia. On January 3rd, Abigail and I drove up to Cincinnati and enjoyed spending an evening alone. I treasure moments like this now that she is an adult and I don't get to see her much when she is at school. The show was amazing and it was great to see Abigail's excitement as she enjoyed the show.

So what is up ahead? Wayne has a two day EEG that is scheduled to start tomorrow (12th). Thankfully, he gets to stay home and have the test done here. Wayne's neuro-oncologist moved his next MRI up from April to February. I think they are taking a conservative approach to watch and see what is going on with Wayne. 

We are just taking a day at a time and trusting the future to God. Wayne and I have discussed recently how God has provided so many resources for our children as we face some of these unknowns. We have talked about worse case scenarios (the cancer being active again) and know that God is in control. If the worse thing happens, God has graciously given us 8 years and our kids have so many amazing people in their lives that would walk along side them. We have our church, our Celebrate Recovery group, Inheritance of Hope, and so many close friends and family members. We have taken some practical steps like ensuring that our wills and POA are all up to date for KY. There is a fine line we walk in trusting God with the future, but also taking practical steps as a family.

My theme for 2023 is the Goodness of God. Every time I hear the song the Goodness of God, all I can do is reflect on how good God has been to me my whole life. He has been good through the hard, gut-wrenching times and also through the easier times. How can I not trust Him with the future when He has been there every step of the way?

Thank you for the continued prayers and love!!

Chicago @ Northwestern

Cincinnati Zoo

Legacy Grove: Park with friends