Day 762/134


Energy can neither be created nor destroyed. ~First Law of Thermodynamics

Benjamin, our brave, sparkly child, is dying.

I realized today that I never actually believed this would happen. Not when Benjamin was diagnosed, not when we discovered his genetic predisposition, not when he relapsed, not when any of his multiple attempts at treatment failed, not even this morning when steroids seemed to be working. Today his energy shifted. It left us with no doubt as to what we must do next. It will be the hardest thing. The impossible thing. The ache is unbelievable. But we owe it to our boy to be as brave as he has been.

This morning, we joyfully returned to 7 South. Benjamin’s night in the PICU was pleasant and uneventful, which means we didn’t quite meet their standards (the feeling was mutual). I never thought I’d be so happy to be admitted to this floor. His lab work showed only a slight increase in white blood cells, but 91% of them were leukemic. It also showed that neither the platelets nor packed red blood cells that were transfused last night lasted at all. He would receive repeat transfusions of both today, back in our home on the seventh floor.

Moving to and from Intensive Care was exhausting. When we were safely settled, Benjamin fell into a deep sleep. He has been complaining of pain in his abdomen for the past few days, but this morning his whole body was aching. The veins in his hands were glowing through his skin. I watched his breathing. I can’t wait to go to the beach with you again, I said. I wanted to fill his mind with peaceful images. I let the tears fall quietly. Benjamin was so, so tired. It was a new kind of tired.

Sarah came to sit with us today. The pain team walked in shortly after she did, and recommended increasing Benjamin’s Dilaudid dose on his PCA again. We both noticed after the change that Benjamin seemed a little more out of it than usual, and we requested that the old dose be restored. It was a better fit for him. He pressed his pain button so many times today. Each time he pressed it, I felt a little relief as well.

Michael took Banyan to school and went to the office briefly, then spent the day here with his boy. He was here when Dr. Wishnew, Dr. Oshrine, and Shari came in to check on their patient. We listened as they told us that they didn’t feel the PD1 inhibitor would be an option. They said we didn’t have to make any decisions right then, as the steroids seemed to be buying time. But if Benjamin’s condition worsened, they wanted us to prepare to either return to the PICU, or to remain on the seventh floor and agree to a Do Not Resuscitate order.

Even then, I didn’t feel the energy shift entirely yet. Michael and I were firm that we didn’t need to make such a decision until the steroids showed us what they could do. We calculated that between their long half life and the nadir periods of the chemotherapy medicines Benjamin just finished, we would know how well things were working by the weekend. The answer would come much sooner.

A thorough set of labs was drawn to analyze Benjamin’s blood–a cell count, a metabolic panel, and a blood gasses screen, something we’ve never seen before. The results were excruciating. Benjamin’s white count had quadrupled since morning. His hemoglobin dropped even after last night’s transfusion, and half of his blood contained carbon dioxide.

When we combined these numbers with what we saw in the boy in front of us, things started to become more clear. Benjamin’s oxygen needs continued to increase. His belly looked so uncomfortably distended. And he said, in one of his clearest and most pained sentences of the day, I wish I felt better.  

Michael and I had to talk. We went into the bathroom and closed the door. We didn’t know how to decide what to do next. We didn’t know what a Do Not Resuscitate order really meant, or what would happen in the PICU, or what intubation would look like. We didn’t know if Benjamin would struggle for days or weeks. We needed guidance. We thought of Palliative Care, who has been so supportive and knowledgeable. We thought of Shari, who has become our friend. But we agreed that the person we really needed to see, whose voice we needed to hear, was Dr. Oshrine. Not fifteen seconds later, he walked through the door. The energy shift had happened, and it was being felt by everyone.

Michael and I left Benjamin with Sarah and our nurse and went into the same closed room as Monday with Dr. Oshrine. He was followed by Dr. Wishnew, Shari, and the Palliative Care team. On Monday, the closed room held a glimmer of hope. Today, Dr. Oshrine used the words impossible recovery. This time I could not stand up straight. I could not. We don’t know how to make these decisions, I cried. Dr. Oshrine was there to guide us, and he firmly said he did not recommend intubation for Benjamin or for any of his patients for whom there was no available treatment. As he was explaining the process, Michael and I were nodding in agreement, suddenly finding the choice an easy one. I thought of Benjamin’s tears last night as we went down to the PICU. The ability to stay here, in our home on the seventh floor, is a huge blessing. The decision was made.

No other changes will be implemented right now. Benjamin will stay on steroids, because they are offering him some pain relief and fever reduction. He will receive transfusions and respiratory support and infection coverage as long as we ask for these things to continue. Our questions were answered. Michael asked the team to give us a moment alone. They closed the blinds and left quietly.  I can’t explain what happened when we collapsed into each other. But I will remember the sounds we made for the rest of my life.

We steadied. We stood up straight. Our work is far from over and Benjamin’s happiness is our priority. We were smiling when we walked back into the room. It was time for Benjamin’s weekly port reaccessing, and he exemplified his interminable Jedi force bravery as he allowed the nurses to puncture his chest with the needle. I watched him with such pride. He has done everything right. If the doctors’ estimates are correct, this will be the last port access he has to endure.

We wanted Banyan with us immediately. Michael left to pick him up from a friend’s house and tell him news no twelve year old should hear. They gathered enough clothes and things for the two of them to join us up here for the foreseeable future. We contacted our immediate families. I held Benjamin’s hand.

The nursing staff placed a shell sticker on our window and a beverage cart outside our door. These are telltale signs I’ve seen before. I couldn’t believe they were here for us.  Nurses came in throughout the day to give us love. One of the custodians we’ve known for over two years came in to clean our room, and her face was full of quiet tears. Benjamin’s nurse for the last two days has been absolutely incredible. When her shift was over, she told me that Benji had the best spirit she’d ever known in a kid. Everything in me wishes this were not happening. But I am grateful it will happen here, on this floor, with these people we love to help us.

I was so happy to see Banyan’s sweet, tear stained face walk through the door tonight. Michael took my place in bed next to Benji and I sat with Banyan and held him and cried. I told him how sorry I was. I want to do something, he said. You have, I told him. You have been the best big brother in the world since he was born. You make him happier than anyone on the planet. There is nothing better to do than that.  

When Benjamin was two weeks old, I went to a Mother Blessing for a dear friend. We sat in a circle and introduced ourselves by saying our names, the names of our mothers and grandmothers, and the names of our children. I had attended many such ceremonies, but this time, my introduction was different… mother to Banyan and Benjamin. I remember so clearly the feeling of pride swelling up in me at having two sons. Brothers. That feeling will never change, even if the physical shape of our family does. Energy can neither be created nor destroyed. 

We have not given up. We have not lost hope. Our hope has just transformed. We no longer hope for a cure, or a miracle. We now hope for a peaceful, happy, proud and beautiful transition for our sweet and strong son, surrounded by so much love I can hardly comprehend it. Deep breaths. You’ll feel so much better soon. Your body knows what to do. It will be my highest honor and my deepest heartbreak to midwife Benjamin through this passage.

199 thoughts on “Day 762/134

  1. Gilkey family, I am heartbroken to hear the news. I’m also deeply inspired by your love for Benjamin and ability to so quickly shift to meet just an needs. I am joining you in hope for a peaceful transition for your sparkly boy, and praying for waves of peace to wash over you as you too are so so brave.

    1. As I’m sitting here watching my father die from leukemia, I’m crying tears as I read this. It’s. Or something anyone should have to do and I’m thankful you are able to spend this time with him. You will be in my thoughts.

    2. I don’t know your family or Benji, but my heart is breaking for you all. Bravery shows through you all. My love and thoughts are with you. Cindi

    3. Gilkey family. Your news is heartbreaking and I have no words that could ever offer comfort. Ben demonstrates so much courage and strength which is truly inspiring. Our prayers are with all of you.

  2. To love someone so much that you set them free… this is true love. This is unselfish, deep, abiding, genuine love. Your brave child Benjamin has lived more, loved more, and laughed more in his time than most could ever dream, all because of your family. I’m so very, very sorry, Laura, for your and your family’s unimaginable heartbreak at this turn. We will keep lifting you all in these thoughts knowing
    you all are so, so good. So whole.
    Benjamin is whole.
    There is only love.
    There is only light.
    There is only truth.
    From one room to another… a passage… no loss..
    Only freedom, only joy.
    To bring them in, to guide them on… all in love… we are gifted with this shepherding.
    A mother and her child can never be separated, not in the reality of love.
    Proven: Energy is neither created nor destroyed. Fact..
    You have everything you need, and so does Benji. You are giving him everything he needs. We trust and we follow and we find peace.
    Benji, you are our hero. Courage and kindness beyond measure forever.
    We love you all so much.
    We are sending all our love and peace and calm and light, walking with you through this passage, holding you whether you stand or sink. We are here holding you in love.

  3. Oh, Laura. My heart is so broken for you all. Yet within your own heartbreak you show such strength, beauty, and grace. May your hopes for Benjamin be fulfilled and may his time be peaceful and full of comfort. We love you all and are praying for this.

  4. Sweet Laura, my heart is aching for you, for Benjamin the Brave, Michael, and Banyan. This indescribable, consuming ache is always directly proportioned to the love we feel. I know through the haze of this grief you feel that you will find the clarity you and your boys need to create the most loving, comfortable, and supported journey. Midwife, indeed.

    Laura—-You are brave. You are strong. You are loved. So very loved.

  5. We love you Benji. You’re the bravest kid I know. Thank you for sharing your journey with us. You will forever be in our hearts.

    Peace, sweet peace be with you all.

  6. Laura I have no words. I am just heartbroken reading this. You and your family are just the strongest, most inspiring and amazing family and are so very loved. I know that you’ll give Benji everything he needs. So much love to you all, you are in my prayers xxx

  7. My hearts hurts for all of you. I am now and always in awe of your grace under immense pressure. I wish everything for Benjamin that he needs now. You are brave. You are strong. So much love and light from us for your family.

  8. My heart breaks for you. You have shown such grace and strength throughout this journey as a mother, wife, and woman. During this transition, know everyone in the Gilkey family is being blanketed in love and light.

  9. Sending love, comfort, and peace during this time to your family. Unimaginable for most but you and your family are bravely taking it on in full force with strength and grace. My heart aches for you and your family. Just know that love is all around you.

  10. Dear family, surrounding you all in love.
    May you all have the support, strength to do this
    and feel infused with love and grace through out.

  11. May the road ahead be a gentle one, filled with
    love and profound peace, as your son and your hearts transcend this world we know and love. He will take A piece of all our souls to a place not as far away as it seems, and you will see him again there, as the future makes him whole again. His life, so far, has been a beautiful place where your love has has shown the full potential of human grace, kindness, and imagination. Benji is so lucky to have you for his family, and you to have him for yours. Our hearts all beat with yours today and in the days and hours which lie between us all and the next world. We offer all our hope of comfort and peace.

  12. I am heartbroken. Sweet, brave, spicy Benji. I love him, and you and your family beyond words. Each of you has done everything right. Sending you love and light now and always.

  13. You have been the best mama, and continue to be– you have given him such a joyful life, time to live out loud, so much love. That you can write all this and be so brave and strong is inspiring. Thank you for everything you do. Our love is with your whole family.

  14. I am letting the tears fall. Benji is and has been so very brave and fought a battle worthy of a giant. Your entire family is truly blessed. Words will not ease your sorrow, the love of family and friends is already pouring over you all.

  15. This morning I will buy supplies to make rainbow stars. The Honey Bee Cottage at Rosemary Birthing Home, where Benjamin received prenatal care, will be open all day to anyone that wants to be together and make rainbow stars in honor of the Gilkey’s. 800 Central Ave Sarasota FL 34236

    1. I have not yet located the needed supplies but the spaces open for anyone that wants to be together and the supplies will find their way there today at some point.

      1. Many gathered at Rosemary Birthing Home throughout the day today. Some came to teach us how to make rainbow stars. Some donated money for supplies to make rainbow stars. Some donated supplies. Many came and shared their love and grief . The cottage will be open all day tomorrow as well. Tomorrow evening we will gather at the beach on the northern end of Lido.

        “I can’t wait to go to the beach with you again” Says the Strong, Brave Mama to her Sparkly, Brave Boy.

        Lets take all of our love and all our rainbows to the beach tomorrow afternoon and gather in a “one heart pulse” bit of time.

        We’ll gather all the warm energy of the sun as it sets. Bring a picnic if you desire and all of your beach fun. If you have a rainbow star bring it. I will try to get some to bring also.

        We can make a mandala, we can run around and play.
        We can stand up straight and be BRAVE, we can


        Bring the children.

  16. I am heartbroken this morning. Your family’s
    (esp. Benji’s) strength, grace and positivity are truly inspiring.
    Wishing your family love, kindness and peace always.
    You are all in my thoughts and prayers.

  17. Tears are streaming down my face as I read this.what a beautiful tribute to your son. How heartbreaking and beautiful it is for him to have you with him, to be surrounded by love. Your family is surrounded by love and light.

  18. Our hearts ache for you. We are in awe of your grace and your strength. Sending our love to all of you but especially your brave Benjamin.

    Matthew 5:8 “Blessed are the pure in heart, for they shall see God.”

    Matthew 19:14 Jesus said, “Let the little children come to me, and do not hinder them; for to such belongs the kingdom of heaven.”

  19. Our hearts are breaking for you, Michael , Banyan and the bravest, and strongest little boy I have ever known. Yall are in our thoughts and prayers and we love y’all.

  20. My heart is broken. We love you Benji and we will always feel your spirit on Clematis Street. Love, Marcelo, Taís, Christina, and Filipp

  21. What an amazing family you all are! Your strength and courage are immeasurable. We send you love and comfort.

  22. Gilkey family….. you have taught us all what it looks like to be truly brave and strong. We love you very much and are praying for you, your family and friends as our hearts are breaking.

  23. I have been inspired by your writing for a long time now. Today I feel very sad but also privileged to know you and Benji and Michael and Banyan without having ever met you. I will be praying all day and until this amazing young man, brother, and son leaves us. If I were with you right now I would have nothing to say – I would pray to our Grace Filled heavenly Father in Jesus name and ask God to give you the help of His Spirit in this difficult time. Here are some verses that I hope will comfort you.

    John 14:1–3 (NLT) “Don’t let your hearts be troubled. Trust in God, and trust also in me. There is more than enough room in my Father’s home. If this were not so, would I have told you that I am going to prepare a place for you? When everything is ready, I will come and get you, so that you will always be with me where I am.

    When Jesus’ friend Lazarus died and was in the grave Jesus came on the scene and the Bible says; ‘Jesus wept.’ It is a picture of a man in deep grief because of the death of someone He loved.

    Lazarus’ sister was angry at Jesus and came to him and said – ‘if you had been here my brother would not have died!’

    Here is Jesus’ answer to her…
    John 11:21–27 Martha said to Jesus, “Lord, if only you had been here, my brother would not have died. But even now I know that God will give you whatever you ask.” Jesus told her, “Your brother will rise again.” “Yes,” Martha said, “he will rise when everyone else rises, at the last day.” Jesus told her, “I am the resurrection and the life. Anyone who believes in me will live, even after dying. Everyone who lives in me and believes in me will never ever die. Do you believe this?” “Yes, Lord,” she told him. “I have always believed you are the Messiah, the Son of God, the one who has come into the world from God.”

    Laura and Michael and Banyan, Jesus understands what you are going through. He entered our world as a baby and experienced the lives we are living and knows the pain of separation and the agony of the cross. He loves you and died for you and will care for you and Benjamin. My prayer is that you call on Him at this most painful and difficult time.

    Your love for Benji is something I will remember and talk about the rest of my life.

    1. Pastor Carl, thank you for your heart-felt words that echo my thoughts but penned them much better than I could right now.

      Dear Gilkey Family, I too, have only known you through Laura\\\’s eloquent portrayal of the daily challenges and triumphs you have all faced together in this terrible and long battle. Thanks to Gavin, I am grateful and honored to have been allowed to share in these intimate details of your family life. My husband and I have stood with you, and prayed for you all, and rejoiced with you, and now… we weep with you. We will continue to remember you in the difficult days ahead, and I agree with Pastor Carl\\\’s prayer above, that you would \\\”call on Him at this most painful and difficult time.\\\” He draws near to you in your pain… \\\”The LORD is close to the brokenhearted; He rescues those whose spirits are crushed.\\\” (Ps. 34:18)

  24. Laura, I am struggling so much to find the words. Benji’s beautiful inspiring life has affected me to deep depths of my soul I didn’t know existed. We are all hurting but somehow you are midwifing us all through this. I have no doubt he and you together have and will continue to change the world. Benji my sweet warrior you have fought so bravely and your journey will live on and change more lives than you could ever imagine. I will spend a lifetime continuing to honor you. We are going to do such BIG things because of YOU. I know that you’ll be there with us.
    Energy is neither created nor destroyed. I am here with you every step to your new beginning ❤️
    I love you Gilkey family. I love you Benjamin The Brave

  25. Endless love to you and your family and Benjamin the Brave. Our hearts, thoughts and prayers are with you.

  26. Sending all our love and strength to you now and always. Benji has been so brave and you so strong, you are love and family exemplified. Our love and hearts are with you all.

  27. It’s with both heartbreak and inspiration that I read this today. My thoughts and prayers and tears are with your family. I asked God for a peaceful and painless transition for Benji. I asked for Her to be there with open arms. I asked Her for peace in your hearts.

    Benji will continue to sparkle, in the sky amoung the stars. I have no doubt he will shine brightest.

  28. I am so sorry. You have done everything you could do for sweet Benjamin. His beautiful spirit will live inside your hearts and someday you’ll be together again. Love to all you you. You all exemplify what it means to be brave and to love with all your heart. ❤

  29. My heart is hurting right now. I know how hard this must have been to write all of this, but again you did it with so much style and love. I truly feel blessed to have gotten to know you and Benji. You both taught me so much and I don’t mean just all the games. I loved listening to Benji tell me about his trip or explain how to play this game and then beat me unmercifully. And then he would really laugh as a young boy does! I would have to laugh too.. I loved the calmness and strength that always seems to surround you. I wish I could hold your heart together but I know God has you and your family hearts in his hands. You are all in my thoughts and prayers.

  30. My dear friend, I am holding you and your family in pure love and light. May strength and comfort find its way to you all now . Benjamin’s courageous, graceful journey – and your beautiful, brave expressions of it – has forever changed so many. We sit with you in sorrow and engulf you in love and blessings.

  31. Laura, I’m so incredibly sorry. Benji and your family have our heartfelt love, (((hugs))) and prayers. You all are amazing .

  32. I cannot believe this. I am heartbroken. I never thought this would happen. You are the perfect mother for your son, exactly what he needs. I will pray for your sweet, brave boy.

    In your hands, O Lord,
    we humbly entrust our brothers and sisters.
    In this life you embraced them with your tender love;
    deliver them now from every evil
    and bid them eternal rest.
    The old order has passed away:
    welcome them into paradise,
    where there will be no sorrow, no weeping or pain,
    but fullness of peace and joy
    with your Son and the Holy Spirit
    forever and ever.

  33. I’ve always eagerly anticipated your blog entry every morning, and of course, today I dreaded it….avoided it even. I expected you to miraculously capture the broken heart, and you did with grace. I’m crushed, and my heart is so heavy, but so privileged and proud of you, Michael, strong Banyan, and Benji, my hero.

  34. Your beautiful family is a blessing, and I’m truly sorry for this heartbreak you are enduring. So many have expressed what I would like to say so eloquently above, and your words have touched me and placed me right next to you and your brave boy. Peace and love to you and your family.

  35. Laura, Mike, and Banyan…our hearts are with you. Your family has shown us the true meaning of love, courage, hope, strength and honor. May you have the peace you seek during this time. Always in our thoughts and prayers-Angel, Jimmy, Emma and Ava

  36. Through your blog I have come as close as I ever will to know the strength, pain, and love of your family. I have followed without comment but have heard your story and the story of your beautiful child and family.
    Though we are strangers, I hold you all in my heart and mind and while I am not generally a praying type, in this moment I pray for quietness, peace, support, strength, and a knowing that love is forever.
    Love and Prayers from one mama to another.

  37. There are no words sufficient. But I offer my love and support. You are the warrior mother and your strength, your son’s strength, teach us all to be stronger. May his transition be swift and the light close. ❤

  38. Laura, I’m heartbroken for all of you. I am heartbroken for all of us who have been praying for Benji’s recovery. I will still pray for a miracle. Sending you unlimited love, strength, and comfort. Thinking about you all every moment. Thankful that Benji’s mother is an angel on Earth. ♡♡♡♡♡

  39. Love and light to your brave, brave son Benjamin and to your beautiful family. Your words are filled with lessons of hope and inspiration. Thank you for sharing your journey. Peace.

  40. Benji and family,
    We are sending hope, positive thoughts and energy your way. Thinking of you!
    Mr. Dragon and Mrs. Brusoe 🙂

  41. Benji, Laura, Banyan and Michael, You are the most amazing family I’ve had the pleasure of meeting. All of you are being held in the brightest of light and greatest intention for guidance, healing, and big, big LOVE during this tender time.

  42. My heart is full of so much grief for you all, and relief too that he will find peace and has been so loved. There aren’t words. I love you all.

  43. My heart breaks for all of you! Please know I am sending love and prayers for your peace and strength at this most heart-wrenching time!

  44. Thank you for sharing your journey, your words, your hopes and fears, your joy, your heartbreak, and most importantly your brave, spirited son. Benji has touched more lives in his few years than most do in an entire long life. Benji is love, love never fails and never dies, yet it transforms. I will continue to pray for all of you daily.

  45. Dear Gilkey Family, my heart goes out to all of you, I will never know what loving a child means, but through your strength and all your post during this journey I somehow do. I wish you all peace and comfort in your family and friends, now more than ever ‘tears’ will flow but time and courage will heal. God Bless you All. Much Love Eddie MIdler

  46. I just don’t have the right words to express how I feel, just that my heart aches for you all. As always, my thoughts & prayers are with you all through this transition.

  47. My heart is holding so tightly to you and your beautiful family right now. I remember that motherblessing and what a beautiful, special day that was. I am always in awe of your grace, tenacity and strength. Sending you all of my love today and forever. <3

  48. We are holding all of you through this transition. May it bring peace to Benjamin the Brave. Sending you all our love today and always.

  49. I am sitting here with my 15 month old grandson,having raised 3 children,my heart hurts and my prayers are for peaceful transition.We have never met but your story has made me a better person.Your son has been an inspiration.Prayers and hugs,we are here for all of you

  50. Oh Laura, my heart aches for you and Michael. This morning Baird and I sat together sharing tears and it was hard to look at each other, to see the sadness mirrored there. I know you are just doing what you do, you\\\’re just being who you are, you don\\\’t see yourself as exceptional, but you are. Your grace and courage is inspirational. Holding you and your beautiful family in my thoughts, sending you strength and love.

  51. Sending so much love and strength your way. Praying for peace and comfort for Benji and your family. Laura- my womb aches with you. You are not alone.

  52. There are no words. Huge hugs and prayers for the peace and love you need. Your family will be in my prayers this week.

  53. Oh, Laura. My tears join yours, and so many others. Abiding with you, sending immense love, sharing your hope. You have all done everything right. My heart breaks, and I am so sorry that you have to do this. Prayers for peace and comfort to surround you all.

  54. This was the hardest thing I’ve ever read, what a strong and courageous Mother you are. I will pray for your sweet boy to be at peace. And for you and your family that angels be with you all through the days ahead. God bless your special family. As hard as this was to write, I feel honored to read such brave emotions you have penned. Thank you for sharing, the community loves you and your family.

  55. I have read the post several times but have not been able to reply. Just know I love you all so very much.

  56. Last night I dreamed of an outdoor dinner party with Benji as the guest of honor. Ivory linen covered tables stretched across the countryside as far as the eye could see. You instructed us all not to let him see us cry, that this was his happy occasion and our joy would keep him strong.

    I love you.

  57. I know your sweet son as Benji,. I work with your Mother and she has told me so much about Benji and his brave fight. I have laughed at the fun times and rejoiced with the good times during his illness. Laura, you have been the best Mother possible. You have researched and inquired and made so many things happen for Benji to make his path as smooth as possible. Your family is awesome and Benji is very blessed to have such a wonderful and loving family. My heart is broken hearing this news today. I have prayed for Benji and will continue to pray for him and your family in the days ahead. I pray that Benji and your family will feel the love and prayers that fill his room. Hold his sweet hands and whisper your love to him with many kisses and know that I will be praying for peace, comfort, patience,strength and love.

  58. To your sweet family and beloved Benjamin. God is catching your tears, and He cries with you. I pray for your peace and Benjamin’s comfort. May the Lord embrace you all in his loving arms. He will never let you go. Give Him the pain, the sorrow, and he will create miracles. Much love to you all. “Blessed are those who mourn, for they will be comforted.” – Matthew 5:4

  59. Laura, Michael, Banyan, and Benjamin I pray for you. I love you all so much. We may have never physically met, but Laura, your presence in my life and heart are constant. I wish I had words to express my feelings appropriately, but I don’t. I just have my tears and my prayers and love for you and your family. You have been a rainbow in my darkness, please let us be a rainbow in yours.

  60. I don’t know you, but I do know that you are amazing. You have fought the good fight, it appears with grace. Wishing you strength and courage, and Godspeed to Benjamin.

  61. I have admired your grace and strength from the first time I ever read your words, Laura. I am praying for the peaceful release of this sweet boy and continued strength and grace for those he is leaving behind. Especially you as you make the ultimate sacrifice that motherhood could demand.
    We are nothing, we are everything.
    We are a circle within a circle, with no beginning and never ending.

  62. Laura

    Clara has been asking about Benji for a couple of weeks.
    We are deeply saddened to hear the latest news.
    As always, we will pray–for strength, for hope, for peace that surpasses all understanding.
    The love of your family is an inspiration.

  63. A friend of mine posted your story, and I took a moment to read. I can feel the pain and, yet I sense some peace as the difficult earthly journey of your beautiful baby boy nears its conclusion. I pray for all of you, for peace, for comfort and for strength. Thank you for allowing us to join in this journey.

    “Smile, breathe and go slowly.”
    ~ Thich Nhat Hanh

  64. I am heartbroken for you all. You are all an amazing family, especially sweet Benji, with all he has been through. I am praying for you all to be surrounded in peace and love and comfort.

  65. I dropped to my knees and wept this morning as I was reading your post. I can’t imagine the pain in your heart right now, even though I am a mother who’s life was changed in just a matter of a few hours almost 16 years ago. I pray that God gives you and your family that same Peace that Passeth Understanding, that he gave to me years ago. I’m not going to say “when I lost my son”, because he is not lost. I know exactly where he is, and I know that he has been surrounded with nothing but joy and a greater love than we can imagine. I also know that I will see him again and we will have an eternity together with no sorrow, no pain, no loss, no heartaches. I have a grandson on 7 south, and I just want you to know that you and Benji have been such an inspiration to others there with your strength and love for each other. I will continue to hold your family up in my prayers.

  66. Tears and love from Issaquah, WA. You both inspire us all with your strength and grace and courage. May you have moments of beauty and peace through this transition.

  67. Laura,
    I don’t know what to say except that you and your family inspire so many. I can barely see past the tears to write this. I’m praying for you, Benji, Michael, and Banyan. That’s what I know to do. As a mother, I can’t imagine the long suffering you have endured. You are a wonderful mother. Youve sustained because of your unfailing love for your precious son, dear Benji the Brave. Although there is distance between us, our hearts are connected. May God bless all of you, comfort you, strengthen you. I love you.

  68. Just heard this story of your family- My family is praying for you right now- we will continue to. May God’s strength fill you and your whole family as only He can

  69. May you feel the *love* of a thousand hearts wrapping around you all.
    Energy can neither be created nor destroyed.  Benji’s light will continue to shine- his beautiful, brave, sparkly spirit will live on…
    Sending our love and wishes of comfort and peace.

  70. My heart broke even more for you all upon reading this . I can’t imagine the pain in your hearts! Praying for you all! Laura, I’ve never met you but I went to school with Mike. Your mid wifing sentence absolutely ripped at my heart. As parents, this is never supposed to happen to us. Sending you light, love and eternal prayers.

  71. As my tears flow, I am overwhelmed with sharing your disbelief that his path would come to this and also in awe of your grace and strength as you share this sobering truth you must now face. I pray for comfort and peace for Benjamin as you lovingly guide him through this passage and offer you all my heart, prayers, and support every step of the way.

  72. I have erased what I had written at least 5 times. There are no words to correctly describe the pain/sorrow another Mom can vicariously feel through your thoughts/words about Benji. We are all crying with you. I am so heartbroken for your family. You have brought so many such joy as you bringing babies into this world. No doubt that in this unthinkable situation your deep devotion and love will make Benji’s journey a pleasant one. Wishing you all PEACE. Benjithebravest

  73. I wish I could hug you guys right now. We will be praying for you and thinking of you. You’re so strong and Benjamin is so lucky to have you. You don’t know us but I am a friend of Celeste’s. We spent six months living on seven south. Our son has a primary immune deficiency and needed my bone marrow to a chance. We faced all of the uncertainty and it absolutely breaks my heart reading this. Please know we are here for you and the Angels and God are here for you always, don’t ever feel alone. ❤️

  74. I am crying with you this morning. I am so sorry Laura. Sending love and hope for a sweet transition for your beautful brave boy and your family. Thank you for sharing your journey with us.

  75. My heart aches with you and for you Laura. You are in my sincerest thoughts and prayers. You are so lucky to be Benji the brave’s mom and he is so lucky to be your son. From one cancer mom to another, I’m so sorry. May God give you all comfort and peace.

  76. We are praying for your beautiful family’s strength. We are also still praying for a miracle, the supernatural intervention of GOD! We love you so.

  77. My dear child, I am coming to be with you as soon as I can stop crying long enough to drive. My heart is broken. I am so sorry for all you and Benji and Michael and Banyan have endured, but so very proud of the way you have worked through it all. As you heart aches for him as a mother, mine aches for you as my child and for Benji, the youngest of my four beautiful, special, dear, dear grandchildren. ❤️❤️❤️❤️❤️❤️❤️❤️

  78. Our hearts are breaking. Sending you love and strength during this most difficult time. Continued prayers for Benji who has shown us a strength that we never knew could exist in such a little person. He has astounded us every step of the way. Wishing you all peace and comfort. Hugs. #BenjaminTheBrave
    Lisa and Geoff

  79. The tears won’t stop. You are always surrounded by brother and sisterhood, and I am holding you in the Light.

  80. Laura, and the Gilkey family– Love to you and to Benji, the bravest boy. You are truly the most amazing family. I wish you love and light, peace and joy, free of pain and surrounded by angels and guides as you go through the shifts in the days to come. I am so sorry it is ending this way. Benji will always be with you, no matter what form he takes.

  81. I read your story because a friend who has a beautiful 4 year old daughter going through her second struggle with childhood cancer shared it. The ultimate price of love is grief, it is a price we so willingly pay for the love we are so fortunate to have. Bless your family, Bless Benji, and most of all Bless your mothers brave heart.

  82. We are sending all our love to you, Benji and your family, to add to the ever growing circle of love that surrounds you during this time. Wishing you much comfort and peace. ❤Kristen, Dan, Aidan and Kyle Kelly

  83. Dear Laura, i’m struggling to find words, and there is no words to express how devastated we are. Your family strength love and courage is inspiring to all of us. We all praying for Benji. Wishing you all comfort and peace. Much love; Filipp, Christina, Marcelo and Tais

  84. Our is family praying for you all … As a parent I’d be lost too .. God give you all strength to get through this tough time in life .. GOD bless your son .. No more pain sweet angel ❤

  85. After reading your post words fail me. One thing is clear and, it’s my prayer that this will sustain you all in this time of unimaginable sadness. You’re surrounded by amazing love, friends and family. God Bless.

  86. Sending love to all of you.

    I wish there was something beautiful I could write here that would make it easier or less painful. Having lost a son recently myself, I know there isn’t. Thank goodness there is so much love surrounding you all.

  87. I wish I could hold you and your family and make it all better. I can only hold you in my heart and love you. Peace.

  88. You are an inspiration and even when doing the most impossible and unfathomable a mother could endure , you’ve displayed unimaginable grace, hope, and strength. Whenever people ask me why I chose a birthing home with my son, I always say your name. you have touched so many mothers and families, and have forever impacted me, then and even more now. May God provide your family comfort and peace. Benji is the bravest boy and his spirit will shine forever <3

  89. We don’t know each other but we have many friends in common. I just want to send my love, energy and strength to you and your family. May his transition be peaceful. And I’ll be keeping you all in my prayers.

  90. There are no words, only open arms. I will keep you and your family close to my heart in the coming days and months. Though I know you only as a friend of a friend, i am sending all of my love during such a difficult time.

  91. Rick and I send your family so much love. If life before life exists, Benji must have chosen each of you to be his family members, because I know he feels filled with and surrounded by love. May you all feel this as you travel this heartbreaking journey — filled with and surrounded by love.

  92. Laura & Michael,
    Please know that there are many people praying for your sweet Benji and your family as you face these days ahead. My heart is heavy for you and I send you all my love and prayers. I pray for peace and comfort for all.
    Love you all.

  93. My daughter was diagnosed with cancer in Oct. she seven. Thank you for sharing your journey. Your child has touched so many people. Sending love your way. ❤

  94. Dear lovely Gilkey family,

    With tears streaming down our cheeks, you are in our loving thoughts and prayers. We have witnessed countless Skyway Bridge hope-filled journies along with beautifully articulated and expressed updates – hoping for a different kind of transition. Your family strength goes beyond inspirational. Please know you all will continue to be in our thoughts and especially our hearts.

    Love to you all,

    Poppy and Geoff (Spencer)

  95. My dear Laura, I don’t remember the last thing that brought tears to my eyes. Your telling of this sad moment did, I’m sure to many of us.
    I am so grateful that you have been taking the time, energy and clarity of thought to include us in this journey. The opportunity to share this experience with you is a gift to us all, beyond words.
    Your family is a precious jewel.

  96. Laura, I worked with you at KFC for awhile. I was deeply saddened to learn of your son’s illness. My most sincere prayers are with you, your husband and both of your sons. We are going through ALL with a dear friend. I sincerely hope that the Lord grants you peace that passes all understanding.

  97. I have no words. Laura, you have been such an incredible inspiration to me through Ethan’s battle with Leukemia. I am heartbroken this morning, and am sending so much love and prayers for peace and comfort. Love to you all,
    ali posner

  98. My heart breaks for your sweet family. How do you bear the unbearable? How do you imagine the unimaginable? You have shown us how; with incomprehensible grace and love.

  99. Our hearts are aching with yours as you walk through this transition. I’m glad your darling boy has been so surrounded with love. Sending peace <3

  100. My heart breaks for you and your family. I don’t have words. I am so sorry. All of our love to you and your sweet sweet family. My heart will forever be with you and your bracve boy Benji ❤

  101. I read the first line and already had streams flowing over my face. While I have no idea the feelings that you are experiencing in this time of transitions, I can only have empathy and sympathy from one mom to another. As my heart is feeling so much for you, I know it is absolutely nothing compared to what yours is feeling. My prayers are with you.
    Please Lord have your angels wrap this family in their wings so they will know comfort in such times. Please touch their hearts so they know that you will hold it together while it feels like cracks are forming. In this I pray in your Name Amen.

  102. all the love in the universe is surrounding you, holding you, as you make this transition together. thank you for your bravery and making this world such a better place. hugs and kisses to you, sweet mama.

  103. I have no words, no experience, only love to offer. Please know that people around the world care for you and your family, and are willing as much peace and joy towards you as we possibly can during this hard transition.

  104. Jesus, God and the Lord are with you in the room.

    “The Lord is my shepherd; I shall not want.
    He maketh me to lie down tin green pastures: he leadeth me beside the still waters.
    He restoreth my soul: he leadeth me in the paths of righteousness for his name’s sake.
    Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
    Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
    Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.”

    — Psalm 23:1-6

  105. there are no words i can put down for this time for you. you’ve used all the brave and great words in your post. i wish you peace. <3

  106. Bengi, Laura, Michael and Banyan we are so sorry to hear this news. You have all fought a great battle against Leukemia. If there is anything we can do to help your family please let us know. We love and care about you guys. You have given all that you could and have done a wonderful job in parenting Bengi. Love you guys! Give him a kiss from us!

  107. Knowing you\’re there with him, that you\’ll guide him, follow him into that next transition, heart and soul, is what transcends the barrier, whether it\’s in days or miraculous years. Comforts, strength and bravery are in the bonds you\’ve all so lovingly built, shared and cherished together. You, too, have done everything right. His inspiration of bravery to you is shining through you, and you know what to do with it now. Not much different than the care and devotion you\’ve been giving for years, but in tune with the solemn shift. This wrenching tragedy is all wrong, but by something divine, you\’re all doing everything right, for Blessed Benjamin the Brave.

  108. Thank you for sharing your family and Benjamin’s journey. It’s a heartbreaking chapter and you tell it so beautifully. That child is incredibly special.

  109. Laura, I unfortunately was brought to your blog only now through a mutual friend. I am so sorry to hear about Benjamin, and I wish for strength and love for you and your family as you go through (and have already been through) something that no one should have to. Your writing is beautiful, and I will be holding space for all of you.

  110. I hope that in the midst of the most difficult path that you have ever had to walk that you feel all the love coming your way and all the hands holding you up! You are truly one of the most beautiful women I know and I know that your fire and your light will shine brightly on Benji as you walk him on to his next journey. I love you more than words can say!

  111. All I have for you is tears, and this song that gave me some comfort in loss. There is nothing harder than this. You are your family are in my heart.

    We’ll see creation come undone
    These bones that bound us will be gone
    We’ll stir our spirits ’til we’re one
    Then soft as shadows we’ll become

  112. Sending your family hugs, peace and love during this time. Benji you\’re a hero. Benyan continue being an awesome Big brother holding his hand and watching over him. May God bless y\’all and give y\’all peace and guidance.

  113. Laura, my beautiful friend, I am sending all the love in my heart to your family and praying for a peaceful transition.

  114. Prayers for you all from Indiana. We are friends with Lisa and Josh Spaulding. Lord, hold them close and let Your peace cover them.

  115. There are no words. Your family is in my heart, and I am wishing for an easy passage for your brave, beautiful boy.

  116. My heart, my thoughts, and my prayers are with you and your family during this most difficult time. I know that God has His arms wrapped around Benji. I pray for comfort for each of you.

    Christy, Joey, & Isabella Savage

  117. My heart breaks for you Benji and your family. As you surround him with your love you are in my thoughts and prayers.

  118. Sharing your love, and your grief. Holding a space for you all to know how great the love is that you have for each other. In peace…

  119. How lucky our family was to cross paths with your family that evening in August at Gecko’s. We were so happy to see both the boys and get an update on all. Banyan was so big and handsome. Benji was robust and happy. Those curls were awesome. What a great memory we will carry in our hearts forever. All of the Houser strength and love is here for you now and always.

  120. I have no words. My tears are falling for you, for your family, and for your sweet, kind, brave boy. I will continue to hold you in my heart and send hope for peace through these days. I’m so deeply, deeply, incredibly sorry. ❤️❤️❤️

  121. I have walked the path you are traveling unless you have been there you cannot imagine the pain you go thru. I lost my daughter and lost my husband to cancer. My prayers are with you!

  122. Laura, my heart breaks for you and your family! Benjamin THE brave will for ever be in my heart! You have generously shared your life and Benjis fight with us! My prayers are full of peace and love during this, most difficult time. Your strength is like none other I have ever witnessed! God speed, peace and blessings! May Benji and your entire family find comfort in the Arms of God! Love you

  123. Through tears today we have prayed for your family. Charlie, Morgan & Jack are heartbroken for their friend and are praying big prayers for him tonight. Our love to all of you and praying that you feel God’s closeness and peace.

  124. I wish I had words to help you through this difficult time, but I know sometimes words are just not enough. My heart is aching for you all, just know you are all in our thoughts and prayers.

  125. My heart is breaking. I do not know you……but there are no strangers along this final journey. We are all joined in faith and love. God bless.

  126. My heart hurts for you all — and yet I’m in awe of your bravery and love for each other. What amazing boys you have been blessed to raise! Praying for a peaceful transition. He will never be forgotten by us <3

  127. All of Benjamin the Brave’s energy, every vibration, every Btu of heat, every wave of every particle that is him will remain always with you. Love and light from the otherside of the state.

  128. I wish I had words for this. My heart aches for you all. Your unselfishness, your thoughts only for how to make this easier for him…You are all so brave. I love you so much. I am praying for you all.

  129. Gilley family,
    I do not know you but I can feel the love you have for your son by reading your story. I also have a Benjamin, along with 2 other sons, and am so proud of each of them as well. I pray the good Lord gives you and your family the strength and comfort you need to help your son cross over. My thoughts and prayers are with you. Cynthia

  130. Laura, Michael and Banyan,
    Our hearts are breaking for you in this most horrible of times. You have been a pillar of strength for Benjamin and your family through this all. You are strong, I don’t know how you have done all you have and keep,up with your writing. There are no words, just know prayers fill our hearts for you and all of your family. God bless you and God bless Benji and Godspeed him to a painless and happy place. Hugs and more hugs to you all. Love, love, love.
    Vickie and Dave – Al’s niece and nephew.

  131. It is a struggle to submit to the reality that is shifting you and your family. We have never met, however thank you for sharing a beautiful piece of your heart\\\’s story. I won\\\’t lie, it was hard to read. However, as a mother I would not want this beautiful story to go unshared, so here I am. Your story touched another complete stranger who is now forever changed. You all are so, so brave. You have remained profoundly connected to yourself, husband and sons. I recently held a loved one as they were dying. It was so painful I almost fainted. However, I refused to miss that part in such a beautiful journey of such a profoundly beautiful being. You are blessed to love so deeply and unselfishly. Please embrace the relief. The relief is first fought, then it comforts you.

  132. To The Gilkey Family – my heart breaks for you and your family and especially little Benji. I to will have hope for a peaceful transition for Benji. In my heart I believe he will have that peaceful transition as he knows his family is with him and loves him even after he transitions. He knows you will always have him in your hearts and he will be happy when he is free of pain completely and will be able to watch over his loving family as he will always love all of you. I am crying with you and for you – be strong for each other and for Benji. Although I don’t know you I send you love and prayers.

  133. Our hearts, thoughts and prayers go out to the Gilkey family as well as everyone touched by Benji. The love & strength that surrounding such beautiful boy is with him and will be forever in your hearts.

  134. My name is Deborah Thompson, Knoxville Tenn….I am a cancer survivor & have a sm group from our church that requests prayer for you & your family. What a beautiful family! My heart aches for you yet feels peace that you guys are going to share this great testimony with many prayers for you all this morning as I talk to God. So much of the unseen we can’t fathom…but your son’s life is touching many people & is a great tribute to the courage he possesses. Thank you for giving others the opportunity to know your beautiful son & family. God bless as you walk this journey…….

  135. I am with you I am with you in spirit. Your beautiful family has changed my life. You all are the strongest family I know right now. I too wish and pray for peace and understanding. As sad as this week has been
    I’ve never felt so much loved and connection with all of you. I am with you I am with you

  136. My deepest, heartfelt prayers for all of you, Laura. Benjamin, you are touching many, many lives. You are Benjamin the Brave, Benjamin the Admired, and Benjamin the Loved. Sending you all love and comfort.

  137. We don\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\’t know your family..but my family is praying for yours and that sweet, strong boy of yours! I am so sorry this is happening and we just pray for peace and comfort. So much love for you all!

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