Devastating news but trusting God’s story

We had a PET scan yesterday morning and were so hopeful with positive results. But when we sat down with our doctor, we could just tell it was more bad news. And it was very bad news. Here is the picture that we were given of our sweet boy’s scan…

Yes, that big thing in the middle of his little body is the tumor. I have to tell you my breath was taken away when I saw how much it was engulfing him. It is just plain devastating. We are devastated.

The doctor shared with us the reality of where we are with Bennett’s treatment. It wasn’t easy for her to say or for us to hear, but she said that in her medical opinion, they do not think they will be able to cure him. And curing him means that they shrink the tumor enough to have it surgically removed.

They have been giving Bennett the strongest chemo that fights Rhabdoid tumors the best, and his has continued to not shrink. This last round of chemo was the most promising because his liver counts got better and the tumor didn’t grow any more from last week. But it is so aggressive, that they don’t think they will be able to give him enough to shrink it drastically.

So now what? Well, we were given many option to pray over this weekend.

  • The first option is to switch over to hospice treatment. They said it is completely understandable and acceptable for families to get to this point and choose not to go through a long and painful battle. We are NOT choosing this option. We feel God has given us a fighter and is calling us to fight along side him.
  • The second option is to move to an experimental drug that is having some success in children with Rhabdoid tumors. It would actually be risky to move to this treatment now for a lot of reasons that would take a long time to explain.
  • The last option is to continue with chemotherapy but stay specifically with the drug that has at least stopped the growth and add radiation therapy as well. The thought is that this strongest drug combined with focused radiation could possibly get us to the point that the experimental drug would be more successful.

We are currently leaning towards combining radiation and chemotherapy together but are taking the weekend to pray about it and let God tell us what to do. But we are not done fighting and we know Bennett isn’t done either…and we pray you will continue fighting with us too!

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Holding hands with mommy and daddy.

So as I sit here and think of my little baby, I still believe God will heal him. I pray it is to heal him on earth, but he is still healed through heaven. And that brings me such relief…Bennett is part of God’s story.

I’ve been reading a book a friend sent me called Unfinished, and the author talks of three stories that we have the option of being a part of.  Here are those options (all taken from the book)…

  1. Believe There Is No Story – People who choose this option simply believe that there is no story. Everything we see and experience is totally random and without meaning. We are just meaningless species on a meaningless planet in a meaningless universe.
  2. Make Up Your Own Story – People in this story often don’t care exactly how they got here or why they are here. They make up their own stories about what’s important and what brings meaning. Often they believe you should do whatever you want as long as it doesn’t hurt anyone, the one who dies with the most toys wins, we can all find God in our inner self, all religions are just different roads to the same truth and so on. For seventy or eighty years they move from one event to the next, like balls in a pinball machine, bouncing off bumpers with lights flashing and bells ringing all the way. They are busy racking up points and bonuses until the ball finally goes down the drain, the noise stops and the lights go out. Game over.
  3. Become Part of God’s Story – People in this story believe there is an author who wrote it–one who created the world and the universe we were born into, one who cast the vision for the expansive plot and story narrative that has unfolded over eons of time, one who began the story and also will bring it to its conclusion, one who gave life to each and every character in the story. And we are designed to play a key role in this story. A role that glorifies God. We have a purpose.

What story are you choosing right now?

I can’t tell you how grateful I am that we are in God’s story. Bennett’s life has a purpose. And if his healing comes by way of heaven…his life will truly just be starting!

This mama’s heart is filled with joy knowing that truth. Yes, there is sadness in there too. But we are living by faith in a God who has created an amazing story that we get to be a part of!

Therefore do not throw away your confidence, which has a great reward. For you have need of endurance, so that when you have done the will of God you may receive what is promised. Yet a little while and the Coming One will come and not delay; but my righteous one shall live by faith…But we are not of those who shrink back and are destroyed, but those who have faith and preserve their souls. (Hebrews 10:35-39)

Now we need to pray. And pray a lot! Ben will probably write a post this weekend about setting up time slots every hour of every day to cover Bennett in prayer. He needs it. We need it.

So get ready to fight some more, my friends. It’s not over!

Be joyful in hope, patient in affliction, faithful in prayer. (Romans 12:12)

90 Comments

  1. I would be honored to take a time slot, or more to make sure Bennett is covered 24/7 in prayer. We serve an awesome God.

    1. I will keep you in my prayers will pass this to my prayer friends too! I would like to be able to pray in a prayer slot . My daughter-in-love shared this story with me and I’m so grateful just to do anything I can to help I know she has been praying and I will start now too .Ps.my son wanted her to tell me they both know how much we believe in the power of PRAYER:)))))

  2. Meghan and Ben,
    I too am devastated, BUT I will never ever stop praying for and fighting for Bennett. Bring on those time slots, I can’t wait to start filling them in.
    Love,
    Kathy Karnes

  3. My heart aches for Bennett and everyone. You are all in my thoughts and prayers. Prayers will continue for Bennett and his purpose.

  4. I am so sad to hear this news (and see the scan), but God is faithful, and I am praying with/for all of you. I will take 1 or more prayer slots this weekend, just let me know. Love, thoughts, prayers & hugs to y’all.

  5. I commit to pray for Bennett and Jay and their healing every time I crave a cigarette. That’s a lot of times right now. I’m sorry you’re dealing with this but we know our God is able.

  6. I am devastated too as I hear your heart. We have been praying constantly and will not give up believing that God’s story is being written beautifully. Love y’all, wish I could be there right by your side. Love you bunches.

  7. I am at a loss for words, so the Holy Spirit within me is crying out to God our Almighty Father, the One who created Bennett, the One who has a plan for him, and for you.
    Numbers 6:24-26

  8. My thoughts and prayers are with you and your little warrior today & everyday until Bennett is home happy & healthy!

  9. Sending so many prayers up. Please know there are many people out there praying and fighting with you. Even if you don’t know them….
    You are a beautiful and strong family. Your precious boy is so loved.

  10. We are praying for precious little Bennett to win this battle. We are praying for you as you struggle with decisions. Yes, there is an ultimate healing and heads he wins, tails he wins, but our gut level, honest plea is for the tumor to be arrested and removed. We are grateful that this tiny little baby boy has turned out to be such a warrior and a happy one to boot. We stand by you in prayer.

  11. My family will continue to pray for precious Bennett and for your entire family. God works miracles, we’ve seen them. He is awesome and able.

  12. Megan and Ben you have inspired me to no end with your faith, hope and love. God bless and heal Bennett. I know He is in control.

  13. I will also stand with you in prayer for complete and restorative healing for Bennett. That God will shine His Light on the darkness of that tumour. Praise God that Bennett is part of His story. Amen! Your family is a wonderful witness in Him. Bless you!

  14. I’m here via a friend that posted a link to your post. I’ll definitely pray for Bennett! I also noticed that y’all are at St. Jude — I live in the Memphis area so PLEASE let me know if there’s anything I can bring/do for you. Seriously. I used to volunteer at a children’s hospital when we lived in Louisiana and know how hard it is to be away from your home for long periods of time. I can bring treats, books, magazines, you name it. Please contact me at cyndillard@aol.com. Does Bennett need any toys, clothes, blankets? Seriously, please let me know if I can help in ANY way.

  15. Praying for your sweet son. I heard about him through Steve P. my son also had a liver tumor but it was attached to the liver and was able to be treated with a blood pressure medicine called propranolol. Jesus, we praise you for being enough for Bennett and his family.

  16. I am a member of First Baptist Church. We have been praying for baby Bennett for a while and my husband and i will continue to pray. Our Sunday School class is praying as well……most of our church is praying for baby Bennett. We are also praying for you guys as well. Please let us know if there is anything else we can pray for.

  17. Praying for all of you, especially Bennett. Asking for peace and understanding that transcends all. May God heal and comfort this precious child..

  18. We will take a prayer slot, u don’t know us, we live in Schulenburg, Texas. We have seen many prayers answered in our 60+ years on this earth. One was our newborn son, 48 days in a NICU nursery in Omaha, Nebraska. He wasn’t suppose to here today. He is over is 35 y o, has four daughters n runs a construction company with his older brother in Iowa. By the way he is 6’6″ tall and 240 lbs. And he loves the Lord with his whole being. So keep the faith.

  19. I don’t know you guys, but I learned about you recently. Just wanted to tell you that I’m praying for you guys for strength, peace, wisdom, and healing! …and even though we don’t know each other… I love you with the love of God. xoxo

  20. While our story is slightly different the main things are the same. Our youngest (of 3) was diagnosed with a rare (1 in 10 million) lung disease called pulmonary hypertension, a year ago. He was completely healthy up until this point. This is an in curable disease. Joel has exhausted all treatment options. My heart aches for your family. I know the feelings you write about. I’m so sorry you have to go though this. Through this year of suffering, God has continued to give us grace and remain so close to us in this time. I know he will do the same for you. Know our family is praying for yours and standing with you for a miracle!

  21. I am so sad to read the news of the last scan, but will continue to pray for Bennett, Ben and Megan. God is preparing you for His outcome and many prayer warriors are there with you.

  22. Will be honored with time slot to pray! Will be continuing to pray for Bennett and all his family and care givers.

  23. So sorry that this is not the news you wanted to receive – continuing to pray with you for a miracle. Love you guys!

  24. Oh my heart is screaming for you. I choose to continue to believe and pray right alongside you. I can not wait to rejoice with you when God completely heals Bennett. Keep going, keep fighting, keep trusting, and cherish every single moment in your heart.

  25. Ben and Megan,
    Weeping with you but praying now more fervently than ever. We love you guys. His strength is made perfect in our weakness. Praying you feel His mighty presence and that healing will come.

    Our love,
    JB and Shugie

  26. We are praying for Bennett every day and will continue to
    pray for him and all of you and your family.
    We praise God for Bennett and for you and Ben and for your
    faith. God Bless

  27. Sharon and I will be in prayer for little Bennett as well as his family.
    What a very difficult situation for all and what a horrible picture of this tumor growing inside him. Bennett is clearly in Gods hands and God knows this strong and courageous Christian family too!

    We pray that God will give Bennett to his family to grow and pursue his dreams and bring blessings to those who he comes in contact with during his time on earth which we pray will be for many years!

  28. We have been praying for Bennett and your sweet family every day. You are such an awesome example of courage, faith, and bravery. We will continue to pray for his healing and your strength.

  29. Lord, I lift up this family, especially little Bennett. I pray for this mass to be lifted out of his little body in the miraculous way that only you can do. I ask for peace for Ben and Megan and the entire family.

    In the Name of Him who can do Exceedingly More than we can Imagine, Jesus the Christ.

  30. “May the Lord bless you and keep you; May the Lord lift his countenance upon you; and give you peace.” I will be praying for your entire family as you process and pray through this news. Thank you for sharing your journey of faith, and for trusting in the Lord.

  31. It is possible to enjoy the Lord and glorify Him in the midst of adverse circumstances…
    John 16:33 I have told you these things, so that in Me you may have peace. In this world you will have trouble, but take heart…I have overcome the world.
    You are covered in prayers…

  32. Sending so much love, positive thoughts and prayers to sweet baby Bennett and your family right now. May God lay his healing hands on Bennett quickly and remove this dreadful cancer. Praying, praying, praying.

  33. my he heart screams out to God …my heart breaks .. my God is an awesome God that all things are possible. Bennett is on my mind and in my heart… a constant prayer for healing … for peace for you.

  34. My heart breaks for this sweet family. I can’t imagine what you guys are going through. Ours prays are with Bennett & his family. Praying for a miracle.

  35. You’re post is such an example of God carrying you in this valley. Our hearts hurt as we pray for your precious little boy. Pressing on in praying for wisdom, direction and of course healing! We love you all! Fight on!

  36. Megan and Ben, I am so sorry. I pray for Bennett and you guys everyday. I will continue to pray that God heals baby Bennett, keeps his arms wrapped around your family and gives you the strength to get through this.

  37. Number 3! We are part of God’s story. I lost my little brother Paul on February 7th, 1987 at the age of 12. He was sent to teach our family how to love. He was the epitome of love. They never learned. We walk our walks in faith, not by sight, I learned. He was part of God’s story. Walk your walk. We are not in control. God is love. “Come to me as little children”. All love, prayers of healing and peace to you.

  38. Your story was referred to me by a dear friend, Steve Peifer. I, too, am a cancer warrior and I can’t imagine having to go through this with a child. My life scripture is II Cor. 4:8-10 and 16-18. “We are pressed on every side by troubles, but we are not crushed and broken. We are perplexed, but we don’t give up and quit. We are hunted down, but God never abandons us. We get knocked down, but we get up again and keep going. Through suffering, these bodies of ours constantly share in the death of Jesus so that the life of Jesus may also be seen in our bodies. That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are quite small and won’t last very long. Yet they produce for us an immeasurably great glory that will last forever! So we don’t look at the troubles we can see right now; rather, we look forward to what we have not yet seen. For the troubles we see will soon be over, but the joys to come will last forever.” Speaking life and peace to your family.

  39. I am a prayer warrior and a soldier of faith. I will keep on praying and asking our father for a miracle as a partner in Bennett’s Brigade of believers.

  40. I truly believe god has special plans for little Bennett, he’s already touch our hearts. Praying god give your family strength and courage through this difficult time. ♥♥♥

  41. This is not the news we wanted to hear but God is still in control and we choose to keeping lifting up prayers on Bennett and the Coleman’s behalf. Just wanted you to know that our friends and family join us in Georgia, TN and IN, praying for a miracle in Little Bennett’s life. To God be the glory!

  42. As former neighbors of Ben and his family, we will pray continually for healing and God’s perfect plan. He will give you strength and endurance.

    1. Don’t loose faith our Lord Jesus will healed your beautiful boy Bennet he will put his hand on top of that tumor and he will erase it in Gods name lets pray together the our Father prayer, if you don’t know, it goes like this Our Father Who art in heaven, hallowed be Thy name; Thy kingdom come; Thy will be done on earth, as it is in heaven. Give us this day our daily bread; and forgive us our trespasses, as we forgive those who trespass against us; and lead us not into temptation, but deliver us from evil. Amen.

  43. My daughter has autism, and I know it doesn’t even compare to what you are going through. The only thing I can say is that my mommy gut has always been right, despite what people have told me to do or doctors for that matter. Listen to your mommy gut. It is the most powerful tool God has given us as mothers.

  44. Megan, thank you for sharing your lives with us. I have been praying and will continue to pray for your sweet little boy, as well as the rest of your family.

  45. Praying for Bennett!
    Father, I come boldly before Your throne to obtain grace to help in time of need. I have confidence in Your Word, and I take hold of Your promises to heal Bennett. According to Isaiah 53:5 and I Peter 2:24, Resist sickness and disease. Speak with my mouth and believe in my heart that Bennett is healed of all sickness and disease.

    Your Word says that Jesus bore all sickness and diseases, and He carried my sorrows, so let Bennett receive healing now. I know and declare that Jesus is Healer. I give You all the praise for providing everything for Bennett to walk in wholeness.

  46. I am praying for your sweet boy and your strength. I am one of so many people who you don’t know, but have heard of your struggle. I can’t even imagine how many lives you and your family have touched. I am so thankful for your strong faith. Sally

  47. Mad….Sad….Angry….but committed to the fight. God heal this baby child. Praying with promise that He will make everything work to His glory.

  48. Hi Ben & Megan,
    I am a member of The Bayou Youngsville. I can’t say that I have met you guys. Kori LeCompte is my Daughter & her Her Husband Jeramy LeCompte is my son-in-law (Just to let you know). I have read your post thru Kori forwarding it to me, and I have heard of your guys plight thru Church.
    Just wanted to let you know I brought supper for your family yesterday. I met Megan’s Mom, who was quite delightful & y’all’s other 2 children. Y’all have a lot of blessings in your life!! The kids were happy & beautiful. It means so much to me to help & pray for y’all.
    You know as I read all of these messages I keep thinking of the book “Heaven is for Real” and I keep thinking of Bennett’s Angels that are protecting him. He looks so happy even in the hospital. I know he feels so safe and secure with y’all’s presence.
    God has a plan. Y’all are Blessed to have little Bennett in your life. I pray for y’all and that little Bennett doesn’t hurt and will take a positive course after your and the Doctor’s decision for the course of action now. Praying constantly! God Bless Y’all & continue to fight!!!

  49. I believe in God’s story, and I shall pray for all of you. Part of Bennett’s story is it has touched my heart and moved me to tears. Sorrowful tears for your situation and joyful tears for Bennett as what ever the outcome may be, healing or life everlasting in heaven, he is surrounded by love and is part of God’s story, indeed. Peace be with you all.

  50. Sharon and I will pray for Bennett to be healed knowing that it will be by the grace of God the great healer that he be healed.
    We will also pray for his family that they may find strength and courage during this very difficult time.

    Little Bennett is an unusually beautiful child and we know your hearts hurt facing such difficult decisions and such a daunting
    diagnosis. Gob Bless you and give you rest.

  51. I, we, stand with you.. and cry out to God along side you. HE alone is our strength in such a difficult time. Let Him hear your crys and you hearts hurt…HIS desire is to hold you all through this time, HE wants to direct your choices, and will to HIS glory, you are HIS beloved, HE loves you all soo.. continue to cry out to Him
    I will send this to all parts of the world where I know christians and we will stand with you in HIM our father

  52. My heart is filled with sadness for the family. Sending prayers and hugs for Bennett’s healing. Such a precious child.

  53. You don’t know me but I am Sonja Davis’ sister. I have been praying for little Bennett everyday since Sonja shared your story and I will continue to pray for you and family as well. God our Father created Bennett and I believe that he was created for a purpose. So I take authority over this cancer and I curse at its roots command it to shrink and disappear in the name of Jesus amen. God is in control of this. Love and prayers in Jesus name.

  54. Dear Megan and Ben, Bobby and I are praying for Bennett’s healing. God bless all of you. Tina and Bobby Brown

  55. We pray for healing for Bennett and also pray that the family will find peace, acceptance and serenity. God bless.

  56. I’ve known George Coleman most of his life and this story of his grandson certainly touches my life. Read Dale Evans book: Angel Unaware. Perhaps it will help you as you travel this long and heart rending time.

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