Tuesday, February 25, 2014

And So it Begins

Today was a good day. Yesterday was long.
 
Let me back-track.
 
Yesterday we began our journey at Roswell. We arrived at 8:45am and went through the process of talking to a myriad of doctors, shaking hands, verifying medications, setting up anesthesia, getting his mesh mask made (to hold his head down during radiation,) and familiarize ourselves with the process. Ben kept begging to leave. He was tired and just wanted to leave. Andy, Ben and I all left at about 11:45am that afternoon feeling completely exhausted. We felt good, but completely drained.
 
I had felt nervous about what I would tell Ben, about what to expect. But I decided to take the "less is more" path. I answered questions as he asked them. I was curious to see what he had thought about all of this, so the half-hour drive to the facility yesterday was valuable discussion time.
 
I told him that they took the bump out of his head, but that there were small pieces left behind. That's why we needed to go to Roswell, to let them give him medicine to help get rid of the extra pieces to be sure his headaches don't come back. The medicine would come through a machine and it would circle around his head, but it would not hurt. And that he would be asleep. He was okay with that. It was also nice to be able to say that he would not be spending the night there, but he would be returning home with us each afternoon. I did not say anything about the hair loss that would occur in a few weeks. That can wait.
 
I explained we let them put the port on his chest so they wouldn't have to give him an IV. I explained how important it is to us that he is comfortable and not in pain. So having this port will allow them to use it for medicine or to draw blood rather than put an IV in his hand or his foot. That brought tears.
 
The unknown is always a scary thing. For all of us. He had never allowed anyone to access his port - it hasn't even been in a week - and he was unsure what it would feel like. I didn't have too many answers to comfort him, so I had to end that teary discussion with, "I'm not sure. Let's ask the doctor when we get to Roswell." The tears lasted for a few more minutes, but ultimately ended with a sad, "Okay, Mom."
 
I think it breaks my heart more when he gives in than when he puts up a fight. My compliant second-born. He hates to disappoint us.
 
I hadn't anticipated having to explain how long he'd have to keep up this schedule, but he asked. "How long am I going to have to do this?" he asked bluntly. "You'll have to come to Roswell thirty times." His mouth dropped in over-exaggeration. "Thirty times?!? That's almost a hundred days!" He was right. I'm sure that sounds like an eternity to a four-year-old.
 
But just like when the boys were scared of the monsters in their closet, it's better for us to acknowledge their fears rather than dismiss them. "Yes, there are monsters in your closet. But let's clean everything out, put Christmas lights up and then hang signs that let them know that they are NOT welcome here." For whatever reason, that worked. The signs have since come down, but the Christmas lights are still up. And months later, monsters have not returned.
 
So I acknowledged his fear. "I know. This is frustrating. And it's gonna feel like a really long time. But this is the best way to be sure the headaches don't come back. And Mom and Dad wouldn't let the doctors do anything unless we knew it was going to help you."
 
Thankfully, he felt some sense of comfort in order to let us continue.
 
So yesterday was exhausting. But it had to happen.
 
This morning was a completely different story. Ben had his socks, shoes and jacket on before I even got to take a shower. "Bud, we won't leave for another half-hour. Do you want to wait to put your jacket on?" He wanted to be ready to leave as soon as we were.
 
He was a chatter-box on the ride to Roswell bounced into the waiting room. He barely sat in his chair. He laughed, mixing up his name with his brother's and jumped onto Andy's back like a monkey, making the others in the waiting room smile. He was a careless little boy! It was as if he felt comfortable within his territory. He had only been there twice, but he seemed good. Andy and I smiled at each other. Ben was okay. And we both knew it.
 
Because of the work that was done yesterday, today went extremely quick and we were in and out within two hours. Ben was anxious to leave, so he took his egg and cheese omelet to go! The radiation itself only takes 10-15 minutes. The rest of the time is setting up for anesthesia and then waiting for him to wake up, a time that was much less than expected.
 
So grateful to be able to come home each day.
 
Tonight was our first night administering the chemo at home. We decided to mix the powder into some ice cream. I'm not exactly sure what Ben thought about his dad feeding him vanilla ice cream in a plastic bowl with a plastic spoon and a mask and rubber gloves. I told him Daddy had to wear the mask to keep his germs away from his medicine. Our sweet son believed me. I mean, I never gave him reason to doubt.
 
So many changes, so little time. But I'm so grateful for the grace that God has given our little boy to walk this road ahead. He's carried himself with so much more grace than you would normally give a four-year-old.
 
And it's all because of prayer. Please keep them coming. We have been the grateful recipients of your selfless intercessions on our behalf.
 
Day Two is coming. Bring it on.

36 comments:

  1. Thank YOU, Lord, for Your grace to these precious people that You love.

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  2. Thank you so much for posting. I don't know if you know how much it has blessed my heart to see God's faithfulness demonstrated through your lives. I couldn't help but to feel overwhelmed with a sense of conviction after reading through your blogs and thinking about how much of a selfless act to take the time despite the road your walking, and still allow God to use you as a vessel. We prayed for your family tonight, and we will continue to lift your family up in prayer.

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  3. My God continue to hold your hands each step of the way during this journey. You faith is inspirational.

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  4. Such an amazing little boy you have. Miracles do happen. Believe! So many prayers coming your way.

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  5. Your words are very inspiring to me. I'm a young mom as well and I had breast cancer three years ago when my boys were two and four. I still struggle with fear of what the future may bring but seeing how your faith is carrying you through this time has been so amazing to me. Ben is an amazing person and so are you and your husband. I will continue to pray for strength and peace for all of you as you continue this journey.

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  6. I too am a mother to a three year old Benjamin David. Every time I look at or think of my son I cannot help but to think of your Benjamin David. You, your family, and your Ben have been in my prayers all day, every day since I first read of what you have been going through via mutual Facebook friends. (My husband Matt Zielinski went to Clarence as well) We will continue to pray for a miracle for your sweet boy. From one "Ben mom" to another please know how much I think of you all, especially your little guy in blue.

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  7. Thank you for keeping us updated! Love to hear about a good day

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  8. Good morning to you all. We do not know one another but I have been following Ben's journey. I have waited to write because the words, the right words, just don't seem to come. I just want you to know that prayers are being said in Texas for your sweet son and your whole family.

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  9. Praying every morning for Ben and your whole family.....and soooo thankful that God is your equipper and love your heart and openness to share this journey....May Ben feel God's peace and your family as well......

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  10. oh Mindy we walked that exact path remember all of this we still have our Ben's mesh mold from his radiation. Roswell is awesome and will treat him well. we are praying for you
    Missy and Kevin Dixon

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  11. Your post have been a welcomed part of my mornings. It is a faith-building, perspective-giving, prayer-inspiring moment each morning. Mindy, your openness to share this journey with us all, some strangers like me, and the Grace that is pouring out of you is a gift. Reading the comments are just as excited. God is fulfilling His promise to use all things for good, and Ben and you and your family draw people to Him.

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  12. Mindy, thank you for these updates. Should you ever be tempted to feel alone in this journey please remember that we are standing in the gap for you, for Ben, for Andy, Jack and Megan daily. Women in my Bible study who don't go to the Chapel are praying on their knees for you. Pleading before the Lord for a miracle. May you feel the sweetness of God around you as you walk this journey.

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  13. Much love and many prayers. My daughter works at Roswell in research. This is what she is working for. God bless and give you all strength & courage. And God give you the strength to find the words to say to your little one

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  14. You are always on my mind, and in our prayers.

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  15. Surrounding you all with prayers and love. Only God knows your every need and He is there beside, above, below, around, inside and out to care for Ben & your family. Miracles are happening. Praying for courage & strength. <3

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  16. My husband is an identical twin. I can't imagine how his mother would have handled this had it happened to her. I am praying for you and your family, what an inspiration you are. Our God is bigger than cancer!

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  17. I pray for strength and courage for Ben and all of you daily.

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  18. Thank you for sharing Mindy. I am encouraged and inspired every time I read one of your posts or messages. Thank you for sharing this journey with us. Praying hard for this incredibly brave little man of yours and for your family! <3

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  19. My brother Brett was born with Neuroblastoma. My parents were told he wouldn't survive. After surgery and chemo, he is 45 years old now and still cancer free. Miracles happen! God truly is bigger than cancer!

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  20. Philippians 4:7 And the peace of God, that transcends all understanding, will guard your hearts and your minds in Christ Jesus

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  21. Praying, everyday till Ben is Better.

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  22. Praying for you, your family, and especially Ben

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  23. Sugar feeds Cancer. Please look it up. Praying.

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  24. This comment has been removed by the author.

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    Replies
    1. Mindy -- learned of your journey through Arlene Meyerhofer, a real prayer warrior. We have two boards on our fridge. One says "We are grateful for..." The other says "We are holding in the Light..." I will put your family on the second board so we can pray for you frequently. Courage and strength in the days ahead. God is asking you to do something huge for someone you love, and I feel sure He will provide the strength for you to do it.

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  25. God gives each of us the Grace to bear things just when we need it. God bless you all, you are all inspirations to those of us who are praying. My daughter was 18 and had a brain tumor. The doctor was sure it was cancer. She is 42 with a husband, 4 children & adopting 3 sisters from Guatemala. My granddaughter was born with serious heart defects and we were told by the docs at Children's (Philly) she only had 40% chance of surviving surgery (and none without). She has had 4 surgeries. She is 26, married with 2 daughters. Miracles abound.

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  26. We are praying mindy. Our whole family is. Love to little ben and so grateful he was more comfortable today. Xoxo

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  27. Praying each and every night for your family Mindy. I was a tenant of Andy's on Heath and Lisbon during college and saw your page posted on a friend's page a few weeks ago. Your faith and trust in Him is remarkable and inspiring. Sweet little Ben is in my family's prayers all the time. If there is one little man and one amazing family that can pull through this, I think it's yours.

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  28. Ben, a family of seven is praying for you in Russia. God is with you!

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  29. Wishing you an ordinary day after treatment...lunch, play, hugs and lots of love!

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  30. Praying for Ben and his entire family.

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  31. I am praying for Ben and your family everyday. I found out about your journey through a forum of mom's with a thread entitled, "how can I pray for you?" Your faith is an inspiration, to greatly understate. As a mom of a toddler and one on the way, my heart breaks for what you all have to go through...and yet I feel hope...your peace is contagious. Peace that can only come from The One who loves us more than we can fathom. I wil continue to pray for you all and follow your blog, awaiting the miracle that will come. Thank you for sharing. You guys are amazing. Love from Virginia!

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  32. I remember your family in prayer daily. God is great. May He bless you all and keep that little boy smiling.

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  33. Lord we have You, the Father of us all. We are crying because the loss of a child is the hardest battle we go through. Thank you Lord for being the love that binds this family now and for many years to come. Strength God give them your strength and love. Let this child life be a lesson in love. To remember the love shared in this family. Understanding may not make sense at first but down the road this lesson will be passed on to other families in the same situation. God you taught me that not only are You the God of the eleventh hour but also the Master of the eleveth minute. Lord if his death is to teach us, make the lesson crystal clear. God, the Father of us all, bring forth a wellstream of love that passes all understanding. Peace from your mouth Lord and silent the nay sayers. I ask and also feel others in this prayer, stand hand in hand for your loving touch and dry the many tears and I believe that God will way lay the pain so his last moments on earth be blessed and pain free. Amen

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  34. I saw this post on FB and was immediately drawn to it because my father and grandfather were both named Ben Sauer. I wonder if we are somehow related. Have you considered or do you even know about Bethel Church in Redding, CA? They pray for people regularly for healing from cancers and many, including a man in MY OWN church have been healed. The man in my church had a brain tumor. He has recently had his one year scan since he visited Bethel Church for prayer, and it is clear! He'd been through chemo and radiation and the tumor had started to grow again and was facing more chemo. He went to Betel Church, got prayer, came home, was re-scanned and the tumor was gone. Please consider taking your Ben to CA.

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