Friday, February 21, 2014

The "C" Word

We had our first visit to Roswell today in order to register and meet with anesthesia. We'll have a simulation of the treatment on Monday, 2/24, and then radiation will begin on Tuesday. Chemotherapy will be administered at home on the same days as treatment in a crushed-pill form.
 
I'm still not sure how long we'll be able to keep Ben from hearing the "C" word. Cancer. He knows that word. He knows what it does. We've talked about it quite a bit over the past few years, as the thing that took their grandma home this past October. They saw it overtake her body and make her weak. We were at her house for dinner a few nights before she had passed while she was under the care of Hospice. She could barely walk. She wasn't making sense. She just stared into space while her husband tried to feed her teaspoonfuls of the soup we had brought. She fell on her way back to her bedroom, but my husband caught her. And my sons watched.
 
We were at the funeral and encouraged my boys to see her "old body" laying in the casket. She wouldn't need it anymore in heaven. She had inherited new legs, new body. She was now running free for the first time in years. We talked a lot about heaven. About dying. About our guarantee that we would join Jesus in heaven someday. Both of my boys asked Jesus to live inside their hearts last April when my own grandfather died at the ripe old age of 97 that spring. They wanted that guarantee that they would never again be separated from Jesus. And what a joyful day their spiritual birthday was!
 
So, yes. They know all about dying. About cancer. I still don't feel prepared on how to answer those questions from my inquisitive four-year-olds when/if we have to cross that path.
 
You see, I am a truth-teller. Especially with my kids. Ben had a reputation at Children's of being a really smart kid. They'd say, "Okay, buddy, I'm just gonna take my little hugger and squeeze your arm a little bit." Ben would look at them with a doubtful stare and say, "Do you mean you're going to take my blood pressure? To see how my blood is flowing?" They'd look at him in shock as if he had just cracked their locker combination.
 
But my kids trust me. They look to me for answers. Questions in the hospital like, "Mom, will this hurt?" "Does this medicine taste bad?" or "Will we be able to go home tomorrow?" were like daggers through my heart. My poor baby. I was devastated that these were questions that he even had to ask. But there is no way in the world I could lie to that boy. He wanted to know the truth. Even when he didn't like my answer, at least he knew it was accurate. When I had to respond, "No, you'll need to stay in the hospital for ten days," he would just hang his head slightly and say, "Okay, Mom."
 
At one point, he had an intense fear of his IV. The sensation of medicine moving through his veins was almost too much for my little one. He would scream in protest, thrashing in the bed, and yelling for the nurses to stop hurting him. Definitely one of my lowest points as a mom. After the medicine had made its way through the IV, the nurse and I talked to try and make a plan for when he needed to receive his next dose just three hours later. "It's only 1 mL of medicine," she told me. "If we just hold him down, it would take just a second and it would be over." "No," I said immediately. "He trusts me. And I'm gonna need that trust to get through the next few months." She agreed to let me try my way. I talked to Ben and he agreed to take the medicine orally if they would flavor it. And he did.
 
At the midnight visit, he woke up to administer three rounds of medicine - by himself - and then peacefully laid back down and went back to sleep. And that's how he has continued to take his medicine, from that point forward. He's the one that pulls the trigger. It's just about the only control he has these days. But he does it.
 
He trusts me.
 
I can't even tell you what an awesome compliment and burden that is.
 
Thankfully, the mediport they inserted this past Wednesday should help alleviate the stress that comes from painful IVs during radiation. That will help.
 
Now, how do I begin to tell him he'll need to go back to the hospital? For every weekday for the next six weeks? To be put to sleep for 15 minutes of radiation and then another pill at home? That he won't be able to go to preschool with his brother because his treatment will be at the same time? And he will possibly lose some of his hair?
 
Hmm.
 
Good thing I've got two days to think about that one.

22 comments:

  1. Praying. Praying. Praying. That trust he has with you is so important. Your Heavenly Father will guide you as you guide sweet Ben!

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  2. Father God, I thank you for the Sauer Family. You are beautiful and mighty in them. I ask You Father, to heal Ben! I know that You could put Your hand into his precious body and heal him. ...and that is what I ask. I ask You to pour Your peace and comfort and guidance over, around and through Mindy and her Husband as they travel this road. Give them the words to say when Ben asks difficult questions, and please prepare Ben's heart and mind to be able to receive the information. Father, I know that Your way, is to meet Your children when they're in their darkest, most difficult times. It's what You do. I ask You to let Your Presence be tangible to the Sauer Family. Any moment, however difficult, is completely doable when YOU are in it. I know that You are working all things together for Ben's good...and for Your glory. Thank You for the ways that You are revealing Yourself to The Sauer's and to the world who looks on. I ask all these things, in the name of Jesus. Amen!
    My prayers won't stop!!

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  3. You're doing a wonderful job Mindy. Thank you for sharing these touching posts. We are praying with so many others every day...I will continue to pray that God provide you with clear wisdom and the ability to make the right decisions as you navigate all of these new details.

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  4. You are a wonderful mom, helping your son get through his problems day by day. We have had 2 family members that had this disease & you are doing exactly what you need to do to help him stay positive & give he & your family all the love you can. The Bible scriptures that have helped us are Rev. 21:4,5 that gives us our future hope & Psalm 83:18 tells us God's name & the strength in it. Prov 18:10 relating God to a strong tower that the righteous can run to. Blessings to your family.

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  5. Ive just spent some time reading every word on your blog. My heart hurts for you and your family. Your faith is so deep in such a painful time is inspiring. Even now as i type i am overwhelmed with tears. All i can say is i will pray for you and Ben and your family.

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  6. Mindy, Thank you for sharing your journey with the world. I pray for your Ben and your entire family every day. You are constantly in my thoughts. Ben has touched so many lives and while I am sure you wish it was for other reasons, he has touched them nonetheless. Your faith is an inspiration to me at a time when I really need it the most. Love and prayers, Denise Englert

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  7. You are the most wonderful mom any little boy could ever dream of. God will give you the strength and the perfect words- we're praying for that. You just keep being exactly what he needs to get through this!

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  8. My 11 yo daughter is a twin and is raising money for Roswell Park and will be shaving her head in May. I will be sharing Ben's story...I would like your permission to share your story. Ben is one of the reasons why cancer research is so important. Sending many prayers his way and the family's way as
    well. And your strength is a true inspiration. You are his Rock!!!

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    1. Thank you, Tara, we would be honored <3

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  9. I think you'll come up with the most comforting words because you know Ben better than anyone. Maybe his brother can bring his preschool "work" home and you can have preschool with Ben later in the day. You will make it special for him because you are a special Mom. You inspire me and I'm praying for your family!

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  10. Please, please read the book Defeat Cancer. I am praying and there is an army of prayer warriors also praying. Trust in the Lord.

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  11. The love you have for your children comes out in knowing the truth leads to trust, and trust leads to truth. Your honesty with Ben is what makes it possible for him to know his Mom truly loves him, enough to say "I'm sorry, but here's what's going on." What a gift for such a young person to have from his mother. The message, because he will know what the C word means, is to do what you've done. Be honest, including, including uncertainty of exactly what will happen physically, but that he has family love and God's love. You, Ben, and the rest of his loved ones have our prayers -- because this is a family struggle-- and we hope the best for all of you. My personal prayer, as a Mom who was told she was going to lose her child-- 14 years ago-- is for you to find those moments of peace and joy with Ben whether who you have him for a short while or until he's 90 years old.

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  12. http://www.youtube.com/watch?v=_l09AJ9lXSE
    I heard this song on the Radio last night and immediately thought of Ben. I am Praying and spreading to the word to everyone I know to pray! Keep you eyes fixed on the Lord! Sending lots love to your family!

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  13. Your heart is in the right place, and that right place really hurts right now. We're praying for you.

    I understand that Ben's condition is very rare. Will he be able to have all of his treatments locally at Roswell?

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    1. Yes, all treatments will be at Roswell. <3

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  14. Mindy you are amazing. Honesty is important. Sam is the same way and I think it is good for the kids to have some control in an uncontrolled situation. I will be praying that the Holy Spirit gives you the perfect words to bring him peace and understanding at just the right time. Love you guys!

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  15. My thoughts and prayers are with Ben and all of his family. God Bless.

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  16. Mindy- I've been praying- I know this isn't much but can I please make him a hat? I have a few friends going through chemo right now and I've made them hats too- it's what I do and he can pick out any style at all (his siblings too)- my gift to your family- www.facebook.com/sheepybaby/ please message me on there or LMK what he's interested in- if he'd like a different style than is on my page I can do whatever. Much Love to you all.

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  17. Darlene, they send people from Rochester to Roswell, it is regionally well respected.

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  18. So many of my Facebook friends are sharing your story. I cannot stop reading, and checking in on how Ben, and your family are doing. I am amazed by your faith and love of God.

    I am continually praying for peace for your family. I pray that God is working through the doctors - giving them insight, allowing them to do God's work through them to help Ben. I pray for Jack. I pray for you, as a fellow mom. I am praying for a miracle.

    I included Ben and your family in our Prayer book at school as well. I just wanted to write a note from one more member of the army of pray-ers praying for Ben.

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  19. My prayers for you, and your family.
    May you feel and know the grace of right now.
    Godspeed you this journey,
    Lynn Oeser

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  20. MIndy - I am sure you have tried everything but have you tried going to Our Lady of Victory Basillica in Lackawanna and asking Fr. Baker for a miracle. His crypt is in the main church and his would do anything for his boys. It's worth a shot. In the mean time we'll keep Ben close in our prayers.

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