Hospice: 101 (Ben named this blog!)

August 2, 2017

The past few days have been filled with decisions and meetings. And, while these are some of the most difficult conversations we’ll probably ever have, our home has been filled with peace and joy. Your visits, your prayers, your text messages, your cards, your gifts, your food….it has all meant so much to us. The love we feel right now is helping us continue on.

The Hospice Social Worker came yesterday at noon. Her name is Karen. I’m sure that she usually arrives and greets an anxious patient with a family that needs tremendous support and help coping with their situation. But, instead, Clay told her about Jesus. We shared our testimony and all the miracles God has done though Clay’s sickness. Every time we tell the stories, we get so excited because it’s simply amazing to think of how much God has directed our path. When we finished talking, she said something like, “Well, I’m not sure how much you will need my services, but the nurse will be here to meet you tomorrow.”

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And, she was. Julie came today. I’ve told you how Clay always wants to remember peoples’ names, so as soon as she said her name was Julie, he thought of a Mel Tillis song “Who’s Julie?” He said, “I’ve got it!” Hahaha. He has so much music and sports data stored in that brain! I wonder why God didn’t put the tumor there, instead of the part of his brain that controls short term memory and eye sight!?

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Anyway, Julie was very sweet. She answered some of our questions and helped us understand how Hospice works. After the two meetings, I feel like we have a good handle on what will happen from this point on. Honestly, it will be really nice to have in-home care and not to have to take Clay to the doctor’s office so often. The nurse will come twice a week for now. She will monitor his symptoms and help us with medicines, etc.

So many of you have been concerned for us. I’m sure you are imagining our situation and considering how difficult these days have been for us. And, I would be dishonest if I tried to say that this isn’t excruciating. It is. I think so often of Jesus in Gethsemene. Through bloody sweat, He prayed for the cup to pass. He cried out to His Father in agony because He knew what He was about to endure. He knew the pain He was facing. But, out of His love for His Father, He laid down His will and agreed to drink the cup. Not my will, but yours be done.

This is how we make it. This is how we keep from drowning in fear and anguish. We are surrendered to the will of God. And, we can clearly see how God has directed every step. He is in control. He has not abandoned us. He has not run away because this cancer is to difficult for Him. He is not afraid of death. He is not perplexed by our situation. He is right here. Right here in the midst of it. Helping us. Holding us. Moving us. Showing us. Loving us. Speaking to us. It’s amazing.

I wrote a blog several months ago about Gethsemene. I encourage you to go read it, again. It’s one of my favorites. God comforted me so much when He showed me several truths from Jesus’ Gethsemene experience. His example is helping me through mine. He led the way. He provided our greatest example of how to surrender our will and then take up our cross.

So, the papers are signed, and our relationship with Hospice has begun. And, while I type this blog, Clay is laying beside me playing “Who’s Julie” on his phone! Oh my gosh, y’all. It’s hilarious. He’s laughing and saying how crazy it is that he can remember the lyrics. I mean, who has even heard this song before??!!! He is so funny. We are grateful that his sense of humor is in tact. We laugh a lot, both at him and with him.

Dr. Weinberg called me this morning to check on us. You should remember him. He was the Neuro-Surgeon that operated on Clay at MD Anderson. We really grew to love him and feel such an attachment to him. We’ve seen him several times since then, but he was not at the hospital when we were there last time. It was in that appointment that we realized we probably won’t go back to MD Anderson. I was so disappointed that we couldn’t say goodbye to him.

But, he called me today and we were able to talk about Clay. He confirmed that he thinks we have made all the right decisions so far. There are many hospitals researching Glioblastoma and working to find a cure, but there are no therapies that are showing consistent results, other than the therapies Clay has already used. We would have spent his remaining days traveling a lot and he would have been very sick. That’s not what he wants. So, I was so thankful for the opportunity to thank Dr. Weinberg. He made a huge difference in our lives and I will always be grateful.

Clay is doing so well. He remains very encouraged. Every time someone visits and tells him that he has impacted their lives, he is filled with energy and purpose. I can’t count how many times he has said, “It’s all worth it, if my life has helped just one person.”

He has had many good visits the past few days. Sunday morning, I woke him up for church and he told me he didn’t think he could get up. I encouraged him to try, but if he showered and still didn’t feel like he could make it, we would stay home. After he got in the shower, he never even mentioned not going. We went to church, went out to eat, came home to a visit from his cousin, sat on the front porch, went back to church for prayer, stayed and talked to our Pastors, came home to an ice cream party with some of our favorite girls, and FINALLY went to bed at around midnight. It’s amazing what he can still do.

Corey, Clay’s cousin, and his wife, Stephanie, came with their kids after we got home from church. Corey sent Clay a text WAY back in the beginning of this diagnosis and it said something like, “Look what God is doing with a lump of Clay.” I LOVED it. I just couldn’t stop thinking about how cool it was that he thought of those words. When we started the blog, I knew immediately that I wanted to use that play on words and we decided on “justalittlelumpofclay.” So, we have Corey to thank for the blog name. We had a wonderful visit, in which we mostly talked about the Lord. Corey really thanked Clay for his testimony and expressed that Clay has had a huge impact on his life. Amazing!

I mentioned the ice cream party, right? It was supposed to be a girl thing, but Clay stayed the whole time! They got him Cherry Garcia and he was one happy guy. Kayla, Hanna, Emma, Mia, Me, Grace and Clay.

Monday, he slept in until Karen came. Then one of his baseball players and his family came to visit. Chuck, Jody, Chase and Brooke McCall. They brought food and flowers and a lot of encouragement. I love when Clay has the chance to talk to young people. He looked Chase right in the eyes and told him that the only thing that matters in this life is Jesus. “Don’t live without Him. Give your life to him, Chase,” he said. “It’s worth it. He’ll never disappoint you. Nothing is more important.”

I was watching Jody (Chase’s mom) as Clay was speaking to him. And, I could read her mind. Because I’m a mom who wants nothing more than for my kids to know the truth about Jesus and to love Him. What an amazing moment for Chase. He looks up to Clay as his baseball coach. And, Clay is telling him how amazing Jesus is…in such a powerful way. I’m praying that Chase will never forget that moment. I won’t. And, I have a feeling Jody won’t. (Chase had run off to play with Ben by the time we took the picture.)

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Our dear friend, Tiffinie Burychka came to visit. We’ve both known her most of our lives. She has been a faithful friend through this time. I love you, “Spiff!” You’ve helped and encouraged us so much.

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Robbie and Jodi Tullier brought us a delicious homemade dinner and visited for a while. Robbie shared with Clay how he has blessed him. It’s so incredible to see men share from their hearts with each other. It’s not weak. It demonstrates tremendous strength. We started talking about how Clay loved Krispy Kreme so much and he hasn’t had any in a while. When they left, they drove to Krispy Kreme and delivered hot donuts to him! So sweet.

Caleb came to visit and watched him eat the donuts. I was really impressed that he didn’t have one. They smelled amazing. I resisted, too, but later when my resolve had weakened, I went to the kitchen to get one, and opened the box to find it completely empty! Those donuts didn’t last 10 minutes in this house! Thank you, Jodi and Robbie. Love you guys.

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My dad spent the day with us working around the house and helping me get some things straight. He is such a help to me. Dinner was delivered by and enjoyed with some lifelong friends. Ms. Peggy, Candy, Jordan, and Brandi came to visit. Ms. Peggy went to middle school with Clay’s mom. So, this friendship goes way back! We love you, all, so much.

I received a beautiful flower arrangement today that made my living room so happy. We got a special delivery from a secret angel who stocked my pantry with snacks and drinks. We are just so blessed and it makes this burden easier to carry.

We are thankful for so many wonderful people in our lives. Thank you for loving us and encouraging us. Goodnight.

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  1. Kay says:

    Thy will be done
    Hard concept but total surrender
    Praying

  2. Mary Lynne He so says:

    Love you guys so much. Wish I could have been able to visit more but I am sure you know what has been going on in our lives. We have been praying for all of y’all. You all have been such an example of how the Lord works in and through us. Doy is having knee replacement today so he will hand a bionic knee like me. lol… Have a good day today and please know that we love y’all 😘

  3. Debbie Nelson says:

    Every word that you write inspires and encourages me! You are a blessing to so many! My prayers are with you and your family each and everyday!

  4. Christy says:

    I love seeing all of your smiling faces. I think Clay and your family have done more living in the last year than many people do their whole lives. Casey and I continue to pray for Clay. Love y’all!

  5. Cindy says:

    Prayers to you and your family.. Loved this Blog… Awesome. So good to have such awesome family and friends. Such awesome encouraging words and wisdom. Thanks for sharing.

  6. Sandra M Green says:

    Such a beautiful blessing that your family is to all of us!!!

  7. Trey McNabb says:

    Clay, you are one of the best guys I have ever known. You will be missed so much. But true to form, you and your family are blessing others in your time of need. God bless you and your family.

  8. Cindy Rome Estep says:

    Thanks for another loving heartfelt post I love reading them and hearing how Clay is doing. I feel so very close to Jesus while reading them. If only I had known y’all when my Mike was going through the same thing. We were blessed with family and friends and our priest. We also had a great repore with Mike’s Doctors. Though his time was much shorter then Clays I remember how much we felt loved and that we were not going through it alone.
    Sending hugs for both of you and thanking you again for sharing Alittleclumpif clayπŸ’œπŸ™πŸ»πŸŒΉπŸŽΆ

  9. Elaine Phillips says:

    I do not know you all. Terri Stanton forwarded me your recent blog posting. I am a patient advocate at MDA and although I’ve seen some patients fight the good fight but gracefully concede to the monstrous disease, I have also seen true miracles. I, myself, had little chance of living more than a year but am in my 7th year of remission. You all are amazing witnesses for God and trusting in His plan. I will, however, pray for one of those miracles for Clay. I’ve seen it happen!

  10. Lisa OIvanki says:

    I will pray for all of you as you transition to this chapter in your family’s life. It’ s so good to see people coming to see all of you. This is a difficult time and yet a peaceful time. Every minute of every day grows more and more precious. I was a respite care volunteer for Hospice of Baton Rouge many years ago before I went back to work after my divorce. I also did the special music for their annual memorial service for several years. My twin sister was a hospice care nurse for almost a year.

    I don’t know which hospice you are using, but they are all specially trained and so wonderful at what they do. I loved the time I worked with them.

    I have been having some serious health problems of my own this summer, which is why I have not written more often. I will continue to pray and think of all of you and try to watch over Ben as he returns to school. Do know you are in my thoughts and prayers daily.

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