Day 767/139

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Benjamin continues to do his brave work, and we continue to make the best decisions we can for him. This has always been true, of course, but we are accustomed to being informed by evidence. Now we are being informed by instinct and love alone.

I was woken in the middle of the night when our nurse came in, alerted by the monitor that Benjamin’s pulse was in the 150’s. His skin had never felt so hot to me. I requested a temperature (now that we have stopped everything but comfort measures, I have to request invasive vital signs like temperatures and blood pressures). We followed it with intravenous Tylenol. It took the rest of the night for his pulse to come down again.

Benjamin’s fever was almost certainly caused by the leukemia itself, but just to be sure, I asked the team at rounds this morning if we could resume his antibiotic. This was a decision we had to make ourselves; our care team is not going to add things back into the plan at this point. But we have gone more than two years without an infection, and we are absolutely not going to start getting them now. It was a decision we made with confidence.

This morning Benjamin felt strong. He sat up in his chair, he ate a little and drank plenty, and we even played a quick round of UNO in bed. The activity prepared him well for a long nap. While he slept, the Palliative Care team came in, per our request. We wanted to talk about hospice. We had several questions, but the biggest one was whether the hospice team would be able to transfuse platelets at our house. After much investigation we were told this wasn’t possible. The arrangement would have to include us taking Benjamin to our local hospital every other day or so for platelets. Michael and I couldn’t imagine doing this to him, as uncomfortable as his body is. The rest of our questions didn’t matter. We decided to stay here.

We will never stop platelet transfusions, because we want to avoid excessive bleeding and the chance of stroke and seizure. We had, however, decided to stop transfusing packed red blood cells to avoid excess fluid in Benjamin’s system. But his hemoglobin is dropping (it was 5.7 this morning), and it was clearly affecting his comfort level as the day went on. We decided that we will request a small unit from the blood bank in the morning. All other volumes of fluid have been removed from his daily regimen and he is not showing signs of retention. If it brings him comfort, we think it’s the right thing to do. This is another decision that belonged entirely to us.

Dr. Oshrine responded to our question about Benjamin’s steroids exactly as we expected him to. I think it is very unlikely that the benefit from steroids is going to be sustained. I would look at this improvement as an opportunity to spend quality time with him and focus on his comfort. We are trying, so hard. But Benjamin spent almost all day without supplemental oxygen again. And those collected cells are just sitting there at Moffitt. Acceptance is not coming easily.

Benjamin’s pain started to increase as the evening approached. Soaking in a bath was his answer. He was extremely pale and got very lightheaded to and from his destination, but for the length of time he was submerged, he was in complete peace. He could hardly hold his head up he was so tired, so I steadied my arms on either side of him, allowing him to choose which way he rested. I kissed his head and hummed songs I sang to him when he was a baby. It took all my strength not to cry. I just kept thinking about what an honor it is to be here with him now.

Benjamin’s fever returned tonight. His pulse started to escalate and he felt warm. We caught it much sooner and requested IV Tylenol, which worked quickly. We also increased his pain medicine doses in his PCA. Once his fever broke, he woke up and felt well enough to eat. Out of nowhere, he asked, “Do you know when we’ll be going to NIH?” My stomach dropped.

Michael and I waited until our nurse left the room, then we sat down with our boy. We followed his lead. We answered every question as best we could. We told him that the doctors didn’t think he could go to NIH anymore. He asked what we would do next. We told him they didn’t think there was anything left that would treat his leukemia, and that the most important thing now was that he was comfortable and free from pain. He asked when we could go home.

We considered tonight’s conversation “part one” of what will surely be many more. He didn’t seem scared or confused at all. When Michael asked him how he felt in his body, he said, “I feel fine!” What a kid. We didn’t use the words death or dying, not yet. It didn’t feel right. We told him that his body would know what to do, and that he didn’t have to do a thing. All he has to do now is be happy. Regardless of what we’ve been told, I will make it my mission to figure out this platelet situation, and discern whether hospice is the right decision for us. If Benjamin wants to go home, then we will take him home.

67 thoughts on “Day 767/139

  1. You are doing everything just right Laura. You are such a brave Momma. And if you decide to come home, this tribe will rally around and provide whatever you need so you can just be with that sweet boy and love him as he does his brave work. Praying as I fall asleep and sending much love from Sarasota. <3

    1. Sending all my prayers to Benjamin tonight. The cougage he demonstrates is amazing. Laura and Michael, I pray for your continued strength in this most unimaginable time.

  2. What an honor it is to share this journey with him and you through your words. I know I am not only speaking for myself when I say that Benjamin’s bravery and your steadfast guidance throughout this ordeal have brought so much gratitude into the world. I really believe he is fulfilling a higher purpose and these moments you share with us are such a gift. He is so blessed to have you as a mother. We are so privileged to hold this space with you.. May you both continue to be enveloped in love and may divine guidance continue to touch the difficult choices that lie ahead.

  3. Laura, I just can’t imagine what lays ahead in the decisions that have to be made or figured out. I wish any one of us had the answers or remedies to give. What we do have is a strong community who would help your family any way we can and surround you all with our love.

  4. I am so honored and grateful to you for sharing Benji’s story. You are doing all the right things and absolutely follow Benji’s lead. He’s all that matters right now. His comfort and time with you is everything. I wish NIH could come to him with those cells!! If only it were that simple. I’m praying for all of you and am in awe of your family’s strength and patience throughout this journey. God Bless you!!

  5. i am so honored to know you, Laura. praying that platelets may follow you home. no matter what, you are doing the right thing. holding you with loving, supportive sister-mama energy from afar.

  6. You amaze me with your words. It is very hard not not to get a glimpse of your struggles through your words. My prayers are with you and I too think your best course of action is what your “momma & daddy”instincts are guiding you to do. My prayers are with you.

  7. Thank you for sharing these moments with us. It allows us to feel we are helping by sending love and prayers. And we are sending them, in abundance. I wish you continued strength and support as you follow your incredible instincts to care for your beautiful boy.

  8. You are a momma bear taking such good care of Benji with such courage & strength. Much love and blessings to you Laura. You are amazing and I am honored to know you and be part of this journey. Benji and your whole family is constantly been prayed for and lifted up for peace and comfort. Brave on Benjamin!

  9. I am so honoured and humbled that you share Benji’s story. You are an incredible mother/human, Laura.

    Cheering for Benji!! Sending love, and peaceful energy from Canada.

  10. May God continue to bless Benjamin, you, Michael and Banyan through this time. We are so in awe of your strength and endurance. Keep running the race. You are continually in our prayers.

  11. I feel so honored to read your words! I am in prayer for you daily. Prayers for a lot of things for your family. One that God will give you the clarity you need for the decisions you are faced with. I pray for Bayan and the reality he is faced with and the matureity he is having to display. I pray for Michael and the strength he is having to show in the midst of him crumbling. And you Laura you. The super hero keeping this family together. You Laura the Mana bear. I pray for super human mental, emtional, and physical strength. Thank you for sharing your journey❤️ We love your family!

  12. The first thing I do now in the morning is read this blog. My heart and thoughts are with you. as you travel this difficult journey. Benjamin really is so brave. And so are you.

  13. Your strength and your love is the light that Benji needs. He is blessed to have a strong mama (and family) who will fight for him every step of this journey. Sending love and light from Sarasota.

  14. Continue to trust your exceptional intuitive guidance…you and Michael both have made choices so solid and prayerful all along…Don’t question your spiritual compass….I don’t. It has guided you well.

  15. Your son is so amazing and so brave. It is clear that he gets that bravery from you. In complete awe of your strength. Sending love. Laura the brave.

  16. Thank you Laura for sharing all of Benji’s Journey as completely as you are – your grace is an inspiration to us fellow Cancer Mama’s out here who still struggle and sometimes feel frustrated with a lack of healing. Please know you are in my family’s prayers. Prayers for comfort and peace ✌️ – love always, Stella’s mom, Jen

  17. Holy ground, uncharted territory, liminal space – you are in a perfect place. You are his everything, an eternal spring of love. Blessings, xoxo.

  18. Benji is the bravest little boy I know. Thoughts of you all are with me everyday. Sending my love. Praying for comfort and peace.

  19. Your presence is the most beautiful gift. Offering prayers for continued strength and loving guidance. Sending love with every breath.

  20. Thank you for sharing your journey and your precious boy with us. Thank you for the reminder of what is really important in this life. Love your family. Praying for comfort and peace for Benji and his family.

  21. It sounds like he is still fighting; like his life force is still there. Intention is powerful and, while false hope has got to be torture, one never knows. Praying for the highest and best for his soul in this lifetime to unfold and for the inspiration and guidance to support that. Brave on, Benji. You are a champion! Love to you all.

  22. Sending love and prayers from Michigan. We are praying for you every day….. strength and peace to keep going. What incredible parents you are. Sending virtual love and hugs today.

  23. I weep for Benji, I weep for his Mom and Dad. I pray from the depth of my soul for them to remain strong in the love that surrounds them. I send positive thoughts on what is to be and most of all I celebrate their bravery.

  24. Laura I am MARTY SANDERS mother have been keeping up with BENJI and the family my heart hurts awful for you all and if I could give any part of my body to make BENJI well I would come be there I have gone thru this very same illness with my ten year old son lost him at ten he was the bravest little guy and stole the heart of everyone that knew him and BENJI reminds me so much of my RANDY ,wish there was something I could do to make you feel better my prayers are with you all…I love all the WILSON family as my own…Take care and give him a love kiss from me.

  25. Laura. I met you and Bengi at all children, I’m Misha’s mom. I know exactly what you and your family are going through, we lost Misha on January 12. Enjoy and make as many sweet memories as you can. There will be time for years later. Celebrate him. May God and the knowledge that you and your family did everything you could and were there for him bring you comfort and peace. There are no words. The rainbow star you gave me hangs in her room
    Jackie

  26. Hi Laura. You don’t know me. I found your story through Jennie Joseph, and I am also a birth worker. I am so deeply honored and grateful that you are sharing your journey, and am heartbroken that this is happening to sweet Benji. Please know as a fellow boy mom your words are making me do better as a parent and person. You have made is easy to revel in the wonder of my child and to celebrate right where we are today. It’s all we have. Sending love from the California desert.

  27. Laura, My heart aches for you, Benjamin, your husband, Banyan and your entire family. Your beautifully touching posts have me in absolute tears. I am on my knees in prayer for Benjamin, you, and your family. May The Lord continue to give you strength, wisdom and comfort. I pray that Benjamin will be restored and for God’s perfect will for His beloved Benjamin. You are all in my daily prayers.

  28. Let Evening Come by Jane Kenyon

    Let the light of the late afternoon
    shine through chinks in the barn, moving
    up the bales as the sun moves down.

    Let the cricket take up chafing
    as a woman takes up her needles
    and her yarn. Let evening come.

    Let dew collect on the hoe abandoned
    in the long grass. Let the stars appear
    and the moon disclose her silver horn.

    Let the fox go back to it’s sandy den.
    Let the wind die down. Let the shed
    go black inside. Let evening come.

    To the bottle in the ditch, to the scoop
    in the oats, to air in the lung
    let evening come.

    Let it come, as it will, and don’t
    be afraid. God does not leave us
    comfortless, so let evening come.

  29. Laura, I have been in a constant state of prayer for your boy Benji, for your husband, for your son Banyan and for you. I have contacted all my prayer warriors and prayer lines. Your whole family is wrapped in prayer. Expect miracles…. big and small. You and Benjamin are loved by many. You are teaching us the value of life, love and being in the moment. ” Be still so that you may hear God whisper” . You are all being guided by love and faith..

  30. The picture of you holding Benjamin in the bath is intensely moving and your courage, strength and overwhelming love are all palpable. I’ve never met you but I care deeply. With love.

  31. Bless you, Gilkey family, for your incredible strength and love during this transition.

    You remain in our hearts and daily prayers.

  32. Laura,
    I can not imagine the strength of spirit it takes to walk the path you are on with Benjamin. May God continue to provide you with His strength and comfort. Peace , love and prayers.

  33. I believe wholeheartedly what someone else expressed; He is fulfilling a higher purpose. Your words, your faith, your lives Are blessing others. Thank you for your bravery and honesty. I’m praying for your strength to continue in this great work of loving him through..

  34. Laura, our lives intersected only for a short time, hours…I am sending you so much love, light and comfort as you and your family and Ben walk this path. Your words are teaching me and so many others that there are different responses to life and dying, and we need to listen, learn, empathize, trust, support, love, pray, keep on, acknowledge our own pain and grief, heal, nourish. So many things…

    I will keep you and Ben (and your family) in my heart and prayers.

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