My day started at the hair salon. As I mentioned on my Facebook post, I really don’t care what I look like right now, but my sweet hair dresser friend, Jodi Tullier, was keeping me blonde. So, I went in. I laughed while I was driving to the salon as I was thinking of all the times I’ve sat in Jodi’s chair and cried. I knew today would be another one of those days. Jodi’s dad died of brain cancer just a few years ago and she has been burdened with our situation since finding out. Well, all the girls in the salon have been reading our blog, so we had a great time talking about the Lord today. I brought them all up to speed on the latest news and we laughed about a few stories they’ve heard that are not true. If you heard that Clay’s secretary called me to tell me he wasn’t feeling well…..let me be the first to tell you that Clay doesn’t have a secretary! Ha! Part of the reason I started this blog is so that you can get the story straight from us. But, I just chuckle when I hear of the crazy stories. And, really, I just love y’all for loving us enough to be talking about our situation and wondering what is going on.
When Jodi finished my hair, the girls all got around me and prayed for me. It was awesome. Of course, I left there so encouraged. Thank you, girls. I love y’all!
Our Pastor and his wife visited with Clay while I was gone. I got to see them for just a second on their way out of the neighborhood. They are so special to us. The Lord has used them in our lives for 15 years and we would not be where we are without them.
I made Clay a big breakfast and our sweet neighbor visited while we ate. Then we got ready to leave for our appointment with Dr. Russell. Several of you have told me that you know him and that he is a Christian. So, we were excited about our visit. We got to the Pennington Cancer Center and it felt like we were the only people there. We were not, but they just treated us like royalty. They were so attentive to us and so helpful. We saw the Social Worker first and she showed us a video of how the treatment will work. Then, the nurse greeted us and got vitals, etc.
Then, Dr. Russell came in. Clay started by telling him about our common friend, Randy Sumrall. That question lead us to talking about the Lord. When I said, “Are you a believer?” He said, “Absolutely!”
So, as much as we might have liked Dr. Russell, the conversation that followed is never easy. No matter how many times we’ve had this talk with a doctor, it never gets easier. He reviewed our case and told us his thoughts on our situation. It remains pretty grim. He told us that 20 years ago, no one lived more than 9 months when diagnosed with Glioblastoma. Now, people are living longer, but not long enough. It still feels very surreal when we have these talks. Clay usually looks at me the whole time and we just hold hands and trust God to help us in the moment. But, this conversation ended better than any other. Dr. Russell leaned in, held both of our hands and prayed for us. He prayed for us! While he prayed for us, I prayed for him. Please help me pray for him as he works to determine Clay’s exact treatment. He has a lot of hard work to do over the next week.
We started talking about alternative treatments and clinical trials and Dr. Russell mentioned that he studied at Duke. We started talking about the Polio Vaccine work they are doing. He said that he was aware and he knows the head of the program. I told him that we were told that we would only qualify for that program if we have a recurrence of tumor, post surgery and post treatment. He agreed, but in the middle of a sentence, he said, “Hold on.” And, he left the room. I looked at the Med Student in the room and said, “Is he going to just get him on the phone?” He just smiled and said, “Probably.” Well, he was! He came back into the room on his cell phone and he was talking to Dr. Henry Friedman. He is the head of the Neuro dept at Duke University! He agreed to review our case and Dr. Russell is sending him the MRI. We will be in an established relationship with Duke, so that if we are a candidate for their treatment, at any point, we’ll be able to get in quickly. This is Dr. Russell talking to Dr. Freidman. And, the pic on the right is Dr. Russell’s office wall. Um, I think he might know what he’s doing!!
Ok, so the first step is to get an MRI done. Our appointment started at 1:30, so by now it’s like 3:00 pm on a Friday afternoon. The doctor requested that the MRI be done as soon as possible. I said, “Any chance we could just do it today while we’re here?” He kind of laughed and said, “We’ll see what we can do.” 20 minutes later, our insurance had already approved it and the people were waiting for us to walk over. The doctor and his nurse were kind of laughing in surprise. When they came back in the room, I said, “I’m not at all surprised. This is exactly how God has been doing everything in our situation.” They smiled. The second step is to get the simulation done. This is where they make the mask. Because MDA already did this, our insurance company couldn’t approve for BR General to do it until MDA releases us. The financial lady was telling me to call MDA and ask them. Well, it has been taking them 24 hours to return my calls. Dr. Russell said that I should just call BCBS. So, while we walked to the MRI, I called my Case Manager at BCBS. By the time we came out of the MRI, she had already left me a voice mail saying it was released!!! So, God just did everything. Everything. It is so amazing to watch Him work. We should be completing the simulation by early next week and treatment will start about a week after that.
When we arrived to do the MRI, it was the same two technicians that did our very first MRI while we were staying at the hospital in the first week of May. They remembered us really well. We felt like we were surrounded by friends. As they were taking us into the MRI room, they told us that one of the ladies at the hospital is reading our blog and came to tell them about it. So, they knew about our surgery and most of our story! It was so cool. Clay made it through another MRI just fine. I got to sit with him, again. They were so sweet to us.
The best part of the entire day for Clay was when I asked Dr. Russell about Clay’s diet. I asked him if he would recommend that we make any changes. He said, “Give him whatever he wants.” Clay just about did a back flip right there. He got so excited that my attempt to fill him up with carrot juice and prevent him from ever eating sugar again, may be futile. Now, let me just say this. We’ve received a lot of advice regarding the importance of Clay’s overall health right now. So, we are going to keep juicing and eating healthy, but Clay is going to get his occasional M&M Blizzard from Dairy Queen. And, he was very happy on the way home.
We left in the pouring down rain at 5:00 pm and drove home. Our lifelong friend, Jane Smith, had already delivered our dinner. We’ve had a quiet night at home with the kids. We love you all and thank you so much for praying today. We felt it. Believe me. Your prayers are holding us up. I hope you are blessed by seeing how much God is moving on our behalf. He is a faithful God. Amen. Goodnight.