It’s amazing how fast God responds when we ask Him for help. We left the hospital on Thursday with such a heaviness. Remember I told you how sad I thought we looked while we were waiting for our car at the valet? Well, here is what we looked like Friday:
Friday was a much better day. We started the day by listening to a song given to us by our Pastor’s mom, Jeanne Shipp. She saw that Clay’s favorite scripture was Isaiah 53 and she sent us a CD from her daughter, De, that has a song from Isaiah 53. So sweet. Thank you, Mrs. Jeanne, for you love and for your prayers. Many of you have sent us songs to encourage us and that is certainly something the Lord has used to speak to us in this time. So, we had some church on the way to the hospital Friday morning.
When we arrived, there were cars everywhere. If you’ve ever been to MDA, you’ll know what I mean when I say that there are soooo many people here. You can’t help but realize that you are not in this fight alone. There are so many people effected by this stupid disease and they are fighting right along side of you. Look at all the cars! Our first step that day was an EEG. This is a test that is similar to an EKG for your heart, but it is for your brain. I don’t know what the acronym means and I’m too tired to google it right now. So, feel free to google it. Due to a few episodes Clay has had, the doctor was concerned he could possibly have had some minor seizures. So the EEG was to test for that.
He had little sensors all over his head and they were stuck on with lotion. It was very interesting to watch the technician apply them. That took longer than the actual test. Anyway, this took about an hour. I got to sit with him the whole time. He actually fell asleep for a while and I was jealous. The result of the test was basically normal. There was not enough concern for seizures to add medication. I was thankful because I’m hoping to minimize the amount of medication he has to take right now.
The next step was to meet the Oncologist. This is a large group of Oncologists that all work together. So, first one of the fellows came in to see us. She was very nice and she did all the physical testing with Clay.
She tested peripheral vision, physical strength, mental awareness, and some cognitive skills. He did great. Then she talked to us for a while. Dr. Weathers is our assigned Oncologist. She came in and spent about 30 – 40 minutes with us. She reviewed the pathology report and reiterated some things Dr. Sulman had told us on Thursday. She was the first person to tell us that Glioblastoma does not spread. Glioblastoma is a primary tumor that grows in the brain. It does not originate anywhere else and it does not spread. They are so confident that this cancer will not spread to other parts of the body that they don’t even do full body scans on their patients. Now, I trust her, but I was thankful that the doctors in BR had already scanned the other parts of Clay’s body to look for spreading and they did not find any. So, she’s right. But, I was happy to have the scans to prove it.
She explained that they do not have “stages” for Glioblastoma. When you hear people refer to cancer in stages, that is referring to the level at which the cancer has spread. So, because this cancer doesn’t spread, they don’t think of it in stages. They refer to it in “grades,” which imply aggression. Grade 4 is the highest, most aggressive grade. And, that’s what we have. She talked about the location of Clay’s tumor and some of the major functions that are controlled in that area of his brain. She referred to our tumor as “unique.”
One of the most important things she helped us understand is that the treatment at this stage of Clay’s cancer is very much standardized. They have been studying Glioblastoma for years and they have done many clinical trials in the past to determine that the most successful treatment for the first time Glioblastoma discovery is: Surgery with extraction, followed by 6 weeks of radiation, and a specific chemotherapy drug called Temadar. She complimented Dr. Weinberg on the amazing success of Clay’s surgery and told us that it will be the biggest factor in Clay’s survival. He really did a wonderful job and that miracle is positioning us for success. Dr. Sulman explained the radiation to us yesterday. 6 weeks, 5 days a week of targeted radiation. Then, the chemo. Thankfully, the chemo for Glioblastoma is a pill. We will take it at home and she is telling us that it is highly tolerable. The side effects are generally mild. He could be on it for 6 months to 1 year, depending on his response.
There are no clinical trials in the Oncology department for us right now. All the trials, including the polio vaccine treatment, are only being done for patients with recurrence of the tumor. When the speak to us about this process they always say, “When the tumor recurs…..” Their studies show that it will come back. The web site actually says 100% of the time. Wow. I’m so glad I’m listening to the report of my God, and not the report of these doctors. And, it excites me because it will just make it that much more spectacular if God heals Clay. Anyway, the trials and special studies are all for people with recurrence. So, for now, we just have to do the standard treatment. Honestly, y’all, that was a load off my mind. We have had so many decisions and we’ve been processing so much information that it made it very simple for us to be able to just say “ok,” and know that we just have to do what they know works for now. Clinical trials and other treatment options will come later….unless God does a miracle.
We had a little break, which felt really good, before we had to go to the Radiology department for our follow up visit. We sat in “The Park” at the hospital and Clay had a gigantic smoothie. We are trying to help him put on some pounds before we start treatment. And, the steroids are making him hungry, so he’s been eating everything I’ve put in front of him. We got to just sit and read for a while.
When we met with Dr. Sulman on Thursday, we agreed to go ahead and let them do what’s called a simulation. They make a mask for Clay’s face that will be used during his radiation treatment and they take some more scans that will help them plan for the treatment. By agreeing to do this while we are here now, it will prevent us from having to come back prior to starting treatment.
It is amazing to see all this technology. God made man to be so intelligent and we are reaping the benefit of years of study. So, they took this sheet of plastic with holes in it, dipped it in hot water, then laid it on Clay’s face. It molded around his face and got hard. They sent him into the machine and took images. I had to step outside while he was in the machine, but the technician left the door open so I could see what was going on. The pic above of the computer screens is me watching them work. It just all intrigues me. You can see the finished product in the bottom right hand corner. That’s Dr. Sulman at the top left.
While we were in the waiting room at the Radiology department, I reminded Clay of something he said to me yesterday. One of the first things the Lord spoke to me in this ordeal was out of Psalm 33. I encourage you to go read the entire chapter. It will bless you. It starts by talking about how wondrous God is. How he just spoke and created the heavens, etc. Then in verses 17-19 it says,
“Don’t count on your warhorse to give you victory – for all it’s strength, it cannot save you. But the Lord watches over those who fear him, those who rely on his unfailing love. He rescues them from death and keeps them alive in times of famine.”
As we were trying to decide if we should come to MDA or stay in BR for treatment, Clay asked me, “Do you believe that it is not the horse that saves us, or are we just saying that?” He wasn’t being harsh….he was just being honest. And, I had to contemplate the question. I thought about it for an entire day before I brought it up with him again. I asked the Lord to help me understand what He is saying and to give me direction. I asked the Lord if I am putting my faith in MDA or in Him. After some prayer and contemplation, I told Clay while we sat in the waiting room, that God has given me incredible peace about being in Houston. He’s even made me feel like it might be the best option for us. He has ordained every single step we have taken so far and He continues to part the sea as we walk. While I am not putting my faith in this hospital or these doctors, I do feel like this is where He is leading us. And, we have to have a horse to ride into battle on. We can’t put our faith in the horse, but no warrior would go to battle without a horse. And, why wouldn’t we choose the best one in the stable?
We left the hospital at about 4 pm and it was pouring down rain. But, we left with smiles on our faces and peace in our hearts. We went back to Andy and Brooke’s house to order Chinese food. Clay is so relieved that Dr. Sulman told him he can have some splurges. He has not been happy about the changes to his diet, but he’s making it. He had been craving Chinese food, so we ordered it and had it delivered to the house. My Aunt Janet and Uncle Bill came to Houston and brought my Grandmother, Earlene. They were coming just to see Andy and Brooke for the weekend, so we all got to be together last night and this morning. We ate and visited. Of course, we told them all about our day and we talked about what we might do. Brooke is helping us find some housing options.
This morning, we all had our coffee in our PJs and then we went to a local Mexican restaurant for breakfast. As a Louisiana girl, I can say that I have never had breakfast at a Mexican restaurant. But, it was good!
I had scrambles eggs with chorizo. Yum! Bill picked up the tab and treated all of us. Thank you, Uncle Bill! Clay cleaned his plate and ate Sam’s left overs. Then, we hit the road to head back to Baton Rouge.
Andy and Brooke have helped us so much and have been so supportive. It’s so wonderful to have family that loves you! Look at that selfie. Those are some of my favorite people in this world.
This is a special picture for me. My Uncle Bill has been in his own battle with cancer for about 2 years. Like Clay, the BR doctors told him they could not do anything for him and gave him about 6 months to live. But, he got to MDA and was put into a clinical trial and look how healthy he is right now. He just had his check up and they told him that he is still cancer free! Amen! God is awesome. When the world gives us no hope, there is God. Bill and Janet stood firm on the Word of God and they believed God to do a miracle in their lives….and here he is. I’ve been so thankful that God sent him before us and that his story has been such an encouragement to us. Janet, his wife, has been a strong support to me. She called me as we were driving to the hospital Thursday morning. It’s like she knew exactly how I felt in that moment. I couldn’t even really figure out how I was feeling, yet, but she knew. She called me and just talked to me while I drove. It was something I will never forget. You know how the Bible talks about our ability to comfort others because we have been comforted by God in our times of need….well, that’s exactly what happened. I love them and thank God that they are with us in our trial.
It is good to be home. We are looking forward to being back with our church tomorrow. Thank you, all, for continuing to pray and for all the ways you’ve blessed us in this time. We love you and pray that you are encouraged in your walk with the Lord. He orders our steps. He never leaves us or forsakes us. Amen.
Prayers continue for y’all. Your posts have been such an inspiration and testimony of faith in God. Thank you for sharing
Here’s one suggestion for housing. If you have access to a motorhome, George and i stayed in a campground directly south of mda. It was very nice i will try to look it up and get the name for you.
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