Day 766/138

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The sky at shift change was a thick, foggy red. This is is a strange and confusing time. I am trying to accept all phases of this slow and peaceful transition, but it is so hard to swallow.

We all slept in as late as we could this morning. We woke up needing a quiet Sunday, and our family honored us with that space. We are all learning how to do this together. We feel so well taken care of, so beautifully supported.

Benjamin’s white blood cell count has been lower than 1,000 for several days now. Usually this would be a very optimistic sign that the steroids are working to reduce blasts in his peripheral blood. But we’re being told it is more likely a result of his marrow being so packed that it isn’t producing any cells anymore, healthy or otherwise. Yesterday’s platelet transfusion brought his count to 7,000, so we didn’t transfuse today. His hemoglobin continues to drop without replenishment.

The white blood cell count is one of several misleading improvements. Though he mostly slept, and he used his pain button with regularity, Benjamin hardly used any supplemental oxygen today. This morning he asked to walk to the couch, where he sat and played a game with Banyan. He is completely and totally coherent, no longer speaking in dreamlike phrases. His color has returned. He has eaten several bites of food throughout the day. When our friend and custodian Thelma walked in and saw him, she said, “My heart just overwhelmed me! Thank you Jesus!”

I spoke with our sweet nurse about this disconnect between what we’ve been told to expect and what we can see with our eyes. She said that these waves are not unheard of. Nothing is predictable in death, but she said she remembered an elder nurse once telling her to notice the frequency of clinical changes. If change happens weekly, expect weeks to live. Daily change predicts days to live, hourly change predicts hours. A few days ago, by this rule, I would have expected to say goodbye this weekend. Now, I have no idea.

Michael and I decided to send one more email to Dr. Oshrine. We asked him if it would be prudent to stop the steroids, in the event that Benjamin’s clinical performance continues to improve and we could possibly make it to NIH. As I hit send I realized how foolish and desperate the words sounded. The trial is out of reach now. I know that. Acceptance comes slowly. Also, we believe it’s the steroids that are responsible for Benji feeling so much better; they’ve relieved some pain and pressure from his organs. He can take deeper breaths now. The steroids are certainly responsible for his hunger. If I listen to my instincts, I really don’t want to stop giving them to him. Benjamin needs to feel as comfortable as possible now.

Benjamin’s improved condition also made us consider another possibility more carefully: home. We haven’t made any decisions yet, but we are going to talk to Palliative Care about what a transfer to Hospice might look like. Can he get platelets at home? How often would nurses be there to help us? Where and when would we get our medicines? Who is responsible for what? We are very comfortable here with our 7 South family, and this may be where we stay. But if we are looking at weeks instead of days, we want to know our options. We want to think about where Benjamin would be most comfortable.

One hesitation I have had about going home is that it will precipitate The Conversation with Benjamin. Telling him he will die has been among my biggest fears. A few days ago I didn’t think I would need to talk to him about it at all; that my job was just to keep him comfortable and happy. But I believe we owe it to him to make sure he knows what to expect, and has his questions answered. I know he will let us know when the time is right. It is quite possible he knows already, instinctively. I trust in the guidance that has allowed us to answer all of his hard questions honestly.

My emotions were more grounded today with Benjamin’s improvements, so I spent some time in research. I have researched every phase of his disease and treatment thoroughly, and this should be no exception. Knowledge will help me better guide him through his passage. I joined the bereavement branch of the moms’ group and asked some specific questions. I reached out to two women who have each lost children to cancer and gleaned their wisdom. I researched stages of death specific to leukemia. I feel more prepared now, and more grateful than ever for the sweet moments we have left.

We have no idea what tomorrow will bring. We will make the best decisions we can with the information we have, and we will trust our instincts. We will work on acceptance and sink deep into gratitude. We will surround our boy with love.

60 thoughts on “Day 766/138

    1. I am keeping Benji and you and your family very close in my heart and prayers, witnessing your journey and sending you love and support! ❤

  1. I’ve prayed for you all several times today. Even without knowing you, your story has touched me. Peace be with you.

  2. You were neither foolish nor desperate for writing that email. You are a mother, a fierce and present mother, who – like all good mothers – does not want to let her baby go without making sure every ounce of fight has been made. This is unbelievably, impossibly hard and no one can blame you for asking about one last possible shot at helping the beautiful soul entrusted to your care to live a little while longer.

    I am glad to read that Benjamin had a better day today. I’m holding you all in my heart and my thoughts, and I keep a candle lit for your family.

  3. I follow a blog written by the wife of a man who suffered a traumatic brain injury in 2014. He died this past summer of kidney failure. She described his final days/weeks much the same as what you have shared about Benji. When they removed the life saving measure of dialysis, he actually improved for a short time before he died. Their 6 year old daughter wondered why he looked so healthy and peaceful. Her mom told her that he was “becoming heavenly”, and they were able to witness the transformation. Thank you for sharing such an intimate time for your family. You are so loved.

  4. There is nothing foolish in your hope or your questions, and any mother, especially one as loving as you, would naturally be desperate to have every option weighed. Your concern is part of something you have done perfectly all along: to give your sons well-lived lives. We other moms ache to help you, we pray for a miracle, and we are with you in spirit as your family so beautifully navigates uncharted waters, relying on the ingenuity of your loving hearts. Kudos to you for your overarching presence of mind.

  5. Laura you are so right to send that email. Being in nursing I have witnessed people miraculously recovering. As a mother and wonderful one you want to fight as long as possible. I’m so glad Benji had a good day. I wish I would have gotten to meet my little cousin, he’s a strong, wonderful, and loved little boy. I’m praying for you and your family.

  6. One step forward one step back back is how labor often progresses, right? My experience with death is the person comes together in clarity and presence in waves. They dissolves out into the vapory beyond at times, then come back together, like alternating from solid to gas, solid to gas in turns. His improved comfort tells me people are making the right choices (less fluid, less lung congestion, better breath, better day). It is a gift that such a dire moment forced everyone’s hand to accept that this is the path, with out going there how else could you have? But then it slowing to a place where you can be prepared and not in crisis mode when it happens will allow you peace and some measure of control and intention, so you will be able to look back knowing you had all the information before hand, which is an important part of your process, to be involved in an educated conscious way . So glad the special tribe of mothers who have already been through this more fiery initiation are there to give you some guidance and support through this moment. Holding you up, surrounding you in love.

  7. Your words are not foolish and desperate, they are faithful and strong. You have not quit loving your boy in the way you have always loved him – fiercely, completely, and without reserve. We continue to pray.

  8. My family holds space for you and your family. Benji has been such an exquisite inspiration to so many, and so have you. Your words this week describing the ebb and flow of this process have brought us to tears while bringing smiles to our faces. Friends who don’t know you have thanked me for sharing your story. It’s my first read every morning, before the sun rises. You’ve said you can feel the overwhelming love that is coming from this community and beyond, and I’m certain that love grows exponentially with every share. Prayers for another good day with colored cheeks, games and smiles.

  9. Each day comes with new awareness and you seem to always pick the right path to move down with your Benji. Your family is your grounding place where the love, joy and sorrow all comes together. You will know what the next steps are as you move along I believe in your wisdom.

  10. Praying and praying for Benji, for his physical comfort and his spiritual comfort. Praying for Laura and the entire care team. Asking God for wisdom, clarity, creativity, hope and acceptance. All things are possible, be it miraculous healing or heavenly transition. Sending love from many who know your story and are praying for you all.

  11. You are not foolish at all. Your ability to be present during this devastating time and your ability to feel grateful is humbling and inspiring.
    I must admit, I felt optimism and joy seeing your Benji sitting beside Banyan today.
    I am keeping Benji and your family in my thoughts and prayers every day. There are so many, including myself, who are here to support you . ❤️
    I am hugging my ck much tighter.

  12. The first thing I read, daily. Sending prayers and love to you all. All of us who are following his journey and yours are touched and changed in some way by it. Hope his ‘good’ patch continues.

  13. Thank you so having the courage to share all of this with so many people, Laura. As always, you are touching so many people’slives, inspiring them, and reminding them to cherish their time, to be present. I love you, and Benji, and I know you’ll have the wisdom to get through. There is no shame in asking the hopeful question. Ask them all. Better to ask now than to wonder and wish you had asked. You are strong. I am wrapping you in my strength as well, my love, my light. Hugs to all.

  14. May love, hope and faith bring you peace during these difficult times.My prayers are for

    brave Benji and the Gilkey family.

  15. I have an adult friend also battling ALL. She is just starting her journey. I pray for peaceful and pain free days for your son.

  16. It was such a lift to see Benji and Banyan sitting side-by-side, playing games on the couch together…so very glad to know Benji had some happy & comfortable moments yesterday! But then, he has his amazing family and his Heavenly Father right there giving him the support and love he needs as heaven awaits his arrival with open arms… God Bless you all

  17. Love the picture…
    Praying for constant comfort, peace and strength. You are always on our minds…
    Sending much love.

  18. I continue to put my faith in God to keep his arms wrapped around Benji, you, and your family in such a difficult situation.

  19. A Mother’s love has no end…… you do what you feel is the right thing to do. I pray God and the Heavenly Angels are there for you and this sweet boy and your entire family. One minute at a time, keep reminding him how much he is loved.

  20. My father was passing and my mom would often call (from NC) and tell me that he had less than 24 hours. I would leap on a Delta flight out of SRQ or drive, if the last flight had already left for ATL, and race to NC. This happened for weeks over 2015 and every 2 weeks over the summer of 2015. Each time, she told me how dire the situation was…and each time, I was panicked. Miraculously however, whenever I arrived, my father was fine…as if death was no where in his next decade. I was terribly confused. I questioned everything. Others, who had been through this, told me, the ups and downs were normal and part of the process. I believe in miracles, even if they are small and spread out. Praying for you and your tribe.

  21. You are amazing. Beni is amazing. Thank you for sharing your journey….I am thinking of you all non stop, praying for peace and comfort for you all.

  22. I am reading a book called “Anam Cara: A Book of Celtic Wisdom” and read in its pages a portion of a prayer which is sometimes referred to as “St. Patrick’s Breastplate.” It is spoken in times when we are in need of divine protection—armor for the battle—whatever it may be. I continue to hold you all in my heart.

    I arise today
    through the strength of heaven,
    Light of sun,
    Radiance of moon,
    Splendor of fire,
    Speed of lightning,
    Swiftness of wind,
    Depth of sea,
    Stability of earth,
    Firmness of rock.

  23. Hi Laura,
    For the past week, I have been reading your posts first thing in the morning, before I crawl out of bed and was so hopeful reading the post from yesterday. I hope today is equally optimistic and I hope you get a response from the doctor about NIH. Nothing is impossible and we are all sending all of our love and healing energy to your sweet boy. Trust your instincts and keep doing what you are doing to advocate for your child.

  24. Our hearts go out to you and your family. Benji was just a baby the last time we met. Love and strength during this difficult time
    -the Hwang family

  25. Thank you for continuing to share this journey. Your strength is beautiful, including (and maybe especially) your strength to face and discuss your doubts and fears.) Continuing to lift you up in prayer and wishes for healing and peace.

  26. Laura,

    I am a stranger to you but also a mother which bonds us. A coworker came into my office today with some of your latest words and we both cried and marveled at your strength, and Benjamin’s.

    Although your blog is somewhat public, I would never use your words without your permission. You beautifully state why blood and platelet donation is so important, and I would love to share this with our donors. And no, you are not being selfish. I speak for the local blood bank, and we are honored to provide blood and platelets for Benjamin for as long as he needs them.

    God Bless.

  27. So wonderful to read that you’ve gotten some more quality time together. Thinking of you and sending you peace and strength!

  28. Joining this community in offering positive energy and prayers to Benjamin, you and your family for continued strength and love.

  29. I’m so happy to read that Benji had a better day yesterday and got to spend some quality time with Banyan. I’m sure it was extremely beneficial for Banyan to be able to talk and laugh with his brother. Indeed, yesterday was a gift for all of you., a much needed lift to cherish in this unpredictable process .

  30. I feel foolish relaying stories of the closest things I’ve known to dear Benjamin’s journey, because they’re nothing like it, don’t come close to giving me the depth of capacity to grasp what you’ve been through and are going through. But it’s a thought that, in this open universe you’ve created, seems worth sharing-
    I knew a guy, and we were very close since high school, though we chose very different paths in life – I should say instead that fate gave us very different lives. He had rheumatoid arthritis since he was 5 or 6, entered remission for a while in his teens, but then went active for the rest of his life and he died at 43. His body was wrecked by all normal standards since about the time he was 30, disfiguring him as if he were an elderly man, and he lived a sparse, meager, shadow life of public assistance and medical episodes after his mother died, and after his family had disowned him. He brought the weight of family indifference upon him by bad choices and addictions that had come upon him through the disease and medical mismanagement all along the course of his life.

    The real point of describing this guy is that he managed to bring a spark to life that was unique, a humor and levity so utterly in defiance of his daily pains and trials, that it was more inspiring than sad to witness his struggles, best as I could from afar, across daily telephone calls. He knew the fate that awaited him for many years, in and out of a dozen surgeries, shattered bones, fused vertebrae, joint replacements, organ failures, but ignored it and went about his business, doing what he could to laugh at it all and savor what he could in life, every day.

    On my friend’s journey, he ‘went dark’ several times, lost in a wilderness I pitied. We were very close, like I said, and I never knew if he would pop up again in a new place with a new phone, or in a hospital room with a new injury, or if he might never show up again because he had died. I mourned several times for my friend when I thought it was too long for him to possibly resurface. I got used to the thought of losing my friend through this repeated mourning. And in the end it was easier to finally let go, but I still miss him.

    May you be ever foolish in your drive to see your boy enjoy every day, best that he can, for as long as possible.
    Nothing is beyond the power of God in miracles.
    May God bless and keep your Family.

  31. I am so happy Benjamin had a great day. And wanted to move his energy in eati and playing.

    Sending you alll strength as you move into the time of The Conversation. Discussion rather tha succumbing to the heart of darkness is noble. May a eureka of thought guide you all and Benjamin into an easy transition.

    Sending hugs from the frozen tundra.

    -mrl

  32. Laura,
    Have you asked Benji if he was ready to stop treatment? Find out what his thoughts are. Maybe he is ready to transition, but he has fought for so long, and you want him to keep fighting that this is all he knows to do. His poor body is in so much pain, but he just can’t let go. If you give him permission to let go, the process may be easier on him and he won’t feel like he is letting you down. I have known quite a few people that kept hanging on just for their family. I know your family is so, so tired, and he has to be as well. Just ask him what he wants to do, keep up the treatments, or if he just can’t stand it anymore, he can stop. Accept his answer if he is ready. Be honest. Like you said, his instinct’s may be telling him it’s time, you need to tell him as well…….I am saying this with love and honesty. Just my experience. All of us at Bradford in Huntsville have been praying for your family for so long and will continue to do so.

  33. My 6 year old daughter passed from leukemia last spring… if you have any questions, please feel free to contact me. You can find me on Facebook, either through my personal page, or through my daughter’s facebook group, Team Super Everybody.

    God bless, my heart aches for you as you support your son during this surreal time between heaven and earth.

  34. Think about you guys daily! Give that boy a hug from us please

    Let him know his friend has been asking about him!

  35. I can not imagine the feeling and pain you all are going through. Since I seen this post, I have been in pray for Benji since and your family. I know you do not know me however feel free to add me in FB. I lost many thought battles of cancer of some type. My best friend from brain cancer. She asked her husband to call us from NC and request us to come from Ga, so I can spend a day with her. We surprised her with a visit on my birthday. We talked a lot, hugged, laughed and cried. We spoke long about her pending fate. She got sleepy so she asked if I would help her to bed and stay with her while she napped. I said what ever you want to do. I helped her to bed and sat near by and held her hand. She asked if it would be terrible of her to ask if I could lay down and hold her, so I obliged. This is where she asked me if I would be mad of upset if she stopped fighting the battle. I responded that I would miss her with all my heart however if she felt it was time to let go then do what would help her to stop the pain and sickness. She said so many people she asked the same question to told her to stay that they couldn\\\’t live without her. I told her that may be true that they\\\’d miss her but they do not understand the pain you are in. Later that evening we all went to dinner because she wanted to, even though we knew it wasn\\\’t a good idea and we tried to talk her out of it. She demanded to go. After dinner we hugged and cried and said our see you soon. We both told each other we loved each other. Her husband said she knew that she was getting her wings soon and she was so happy she got to spend the entire day together that her final wish came true for me and her to spend the day doing what we done best, laughing, crying and hugging.. I got a call at 4 am before anyone from her hustand saying she was taken to the hospital by ambulance and she was in a non responsive state. But made him promise to tell me thank you for a great last day here on earth. She and I were best friends for about 20 years. Our closing saying was: Love, Hugs and Kisses from Earth to Heaven. She is missed so much I can\\\’t explain it but I know when I need her or thinking about her she will send me a beautiful rainbow. Like the day we said our final goodbyes. She gave us a rainbow that was so bug and bright. Just like she always was. Take it day by day and make the most out of your days. Be upfront and as honest as you can with him. Answer his questions and make sure he understands as well as he can. I know your heart be broken and it will be very hard on all of you and I will pray for comfort when that day comes. May God help you through this battle you are in and hold you when you are so tired you feel you can not walk anymore. Read Footprints in tbe sand. Prayers for all.

  36. Your strength is amazing. I will hug my kids tighter, after reading some of these entries. Benjamin the brave is a true reflection of what amazing parents he has. My heart breaks for you. & your family, your continued strength through this transition and all the lives you have all touched raising awareness with your rainbows.

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