Update 3/18/23: Life and Appointments

 Matthew 11:28-30 "Come to Me, all who are weary and heavy-laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and you will find rest for your souls. For My yoke is easy and My burden is light."

I am so thankful for a God who walks along side and carries me when life is too hard. The past few weeks since I last posted have been hard and emotional, and yet in the midst of that, there have been beautiful moments where I see God moving. We appreciate all of your prayers. I truly think they are what get me through many difficult days. I will have a whole post about the following picture in a few days, after I get all the photos back, but here is a preview of what is to come. The girls requested that Wayne walk them down the aisle and have it recorded in case he doesn't make it to their weddings. To try to express the emotional impact this had on all of us leading up to this event, and even afterwards as we have all tried to process this, is an understatement.

Wayne's neurologist started him on another medicine to help with his seizures. I am thrilled to share that he has not had a seizure in over two weeks, so we believe this third medicine is helping. Wayne has been going to physical therapy two times a week to try to help with is weakness and coordination. I think both of these things are helping him, although he still isn't back to his normal self.

Wayne's brother and his daughter came and visited us for a week. It was wonderful to have them around and spend time with family. Kevin helped Wayne with a few projects around the house that Wayne has been unable to complete. That was a huge blessing to our family. It was just hard that they came during the week Wayne was adjusting to his new medicine, which made him tired. It also was a very emotional week for our family, so the emotion dynamics were a little strong. 

We tried to do a few fun things while Wayne's family was in town. We took the kids miniature golfing during Civil Air Patrol. That was a lot of fun! Speaking of Civil Air Patrol, Shan just ranked up to Senior Master Sergeant. Micaela will be ranking up for the first time next month. Sophia is attempting to rank up to officer...she's missed passing the test by one point! I have no doubt that she will continue to excel along with Shan and Micaela. 

Micaela and Joella participated in a field trip to the local ABC news station. We all learned a lot on this trip and had a great time with our friends.

Abigail returned home from college on 3/9 and brought four of her college friends home with her. Although our house was bursting with people, it brought us so much joy to hear laughter throughout our house. 

In the midst of all of this, we have had so many doctor appointments. Shan is in the process of having a new prosthetic leg made since he has outgrown his last one. We spent 3 hours on 3/16 getting fitted for a leg. Unfortunately, the trial one did not fit him and we have to wait for a new one to be made to see if it is correct this time. The next evening, 3/17, Shan had an MRI to check up on his overgrowth syndrome. We had to drive to Cincinnati Children's Hospital for an 8pm MRI. We had a few unfortunate things happen: 1) his foot from his prosthetic leg came completely off - the prosthetic technician didn't put it on correctly when he tried it on the other leg. 2) Shan's MRI machine broke half-way through a 2 hours MRI, which means we were at the hospital until 11:30pm! It was a long evening, but thankfully, we had a room at the Ronald McDonald House, which saved me from driving home at midnight.

This morning, we got up early and drove home to catch Abigail and her friends before they left for college. It was worth less sleep to get a hug from my oldest before she left for Liberty again. Tomorrow, Grace heads back to Life Action to continue traveling for the rest of the semester. It will be weird that our house went from 15 people a week ago, to 7 by tomorrow. No one told me how weird it is to be a parent with adult kids that come and go. 

We have busy week coming up. Joella has a neurology appointment on Monday to follow up on her epilepsy. Tuesday, we will be heading to Cleveland Clinic for Wayne to visit a new doctor. We have been working for weeks to get all the paperwork to Cleveland for a second opinion. God works in amazing ways and through my friend Amy, whose husband saw this doctor, she was able to get in touch with him and work a miracle. We were told the earliest appointment was 5/4 and an hour later, after Amy reached out, we were moved to this Tuesday! From Cleveland, we will travel to Chicago to follow up with his regular neuro-oncologist. I see lots of Starbucks chai tea in my future this week.

We covet all the prayers we can get in the weeks ahead as we continue to learn more about what is going on with Wayne and come up with a plan. Thank you again to each of you!!! 

Update: 3/4/23 Making Plans

Proverbs 16:9 "The heart of man plans his way, but the Lord establishes his steps."

Before brain cancer (BBC), Wayne and I were typical type A personalities. We had a one year and five year plan. We also loved to make lists and make lots of plans. Since brain cancer, we have learned that lists are okay, but to hold on to them lightly because life can change in an instant. We have experienced that this year: our trip to Gulf Shores and my trip to Florida to volunteer with Inheritance of Hope were canceled due to Wayne's health. We also had plans to do quite a few projects around the house and now those are put on hold or we are in slow motion getting them done. 

Wayne has continued to have numerous seizures. Currently, we are averaging a seizure about every five days. His doctors added a third seizure medicine that is slowly building up in his system. The goal is to hopefully start to lower one of the other seizure medicines (Keppra), since he's at a high dose and it can make patients irritable. Wayne has been handling everything so well, but he is frustrated at times with the extreme weakness he is experiencing. The accountant/type A person in me is keeping a detailed list of symptoms and seizures for the doctors. I hope that this will help give them some more information to help us determine what is going on. Wayne jokes that he is turning into a stone man. The weakness he is experiencing after seizures is leaving him extra weak. We have noticed that he has also lost his sense of vicinity? I'm not sure how to explain. Normally, you can sense when you are close to something, he struggles with that now, thus the ugly toe that he knocked into a garbage can.

We have an appointment this next week with a physical therapist to see if we can work on that weakness. It is a balance to help him regain strength, but not strain him too much so he has a seizure. It's all about balance...the right balance of medicine, the right balance of activity/rest. I think it is hard on anyone to have to ask other people for help when you physically are unable to do certain things. Wayne cannot climb a ladder, can't drive, struggles with doing anything with his right side. What makes brain cancer difficult is that from outside appearances, he looks like he is fine. He doesn't have the "cancer patient" look, but he is definitely struggling. It's hard to not step in and help when he is struggling with a normal daily task. 

Wayne and I worked on re-doing the floor in our laundry room. He is a great teacher and helped me learn how to use a bunch of tools to help him get the floor done, since he was struggling that day with getting up and down. We are super thrilled with the end result.

Wayne continues to push through and make the best of it. I know it has to be hard. We are just praying that the doctors figure out soon what they can do to help him. This continual progression of weakness and seizures is unsettling. Thankfully, the new medicine seems to be helping with the seizure activity. 

Life continues to speed by with our children. Sophia has been participating in many Civil Air Patrol activities. She attended Hawk Mountain Winter school and a SAREX (search and rescue event). She is now certified level 2 for search and rescue and loves every minute of these classes. We are waiting to hear if she was chosen for her #1 pick for her summer activity. She hopes to attend a medical training camp. Micaela recently joined Civil Air Patrol, so we now have 3 cadets. I cannot say enough amazing things about this program and the opportunities it provides our kids. 

My handsome husband in front of my collection of orchids. He knows they are my favorite flower and so he has bought me many over the years. The best thing is that orchids love KY! These all continue to come back and re-bloom. 

Wayne pushed through our last dance class. If dancing wasn't hard enough before, add right side weakness and he's my super hero!

Grace came home for spring break from Life Action. They actually sent he home a few days early so she could spend extra time with Wayne. All of our kids are processing things in different ways.

Naomi is in Florida this weekend serving with Inheritance of Hope. That is the organization that served our family this time last year. I love seeing my kids give back to other families experiencing the same hardship. 

In the midst of all the chaos, we continue to press on and do school. I'm so thankful for the other homeschool moms in my life that are stepping in and doing other fun classes with Micaela and Joella. We do a writing/grammar class on Monday and Wednesday at our house and then on Fridays, the girls attend a geography class with another family and then have a Fun Friday class at our neighbor's house. Sharing the load with others helps tremendously!

Please continue to pray for us as we navigate the unknown. Also, on Friday (3/10), we are going to be doing a super special memory making session with our kids. Can you please pray that God is glorified in it and that I can make it through without being an emotional wreck? I will of course post about it once I get all the pictures and videos. We love all of you and cannot thank you enough for all the prayers and love you show our family!!