Day 768/140

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“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.” ~Thich Nhat Hanh

Benjamin had such a beautiful window of clarity before we went to sleep last night that Michael and I decided in whispers to approach Dr. Oshrine again this morning. We thought that maybe, somehow, we could persuade him to persuade CHOP to accept Benjamin in their CD22 trial. We had it all worked out. We’d fly up to Philadelphia with Benjamin’s collected cells, then return here and keep him sustained with steroids for the duration of the manufacturing period. It was such a long shot. But we went to bed feeling a glimmer of hope, and a great deal of gratitude for the moments that inspired it.

We did not approach Dr. Oshrine this morning. The reality of Benjamin’s “clinical performance status” came back into clear focus in the middle of the night, when serious pain, shallow breathing and an insanely rapid pulse disrupted our boy’s rest. He was burning up. He had to use the bathroom and eliminated a large amount of occult blood in the process. His pain button wasn’t cutting it, and neither were the boluses our nurse administered. She called the doctor on call and increased his rate of Dilaudid. This did the trick, along with a dose of intravenous Tylenol. But we were shaken.

During morning rounds we discussed the plan to transfuse both platelets and red blood today. Everyone agreed that this was the right thing to do.  We also talked about Benjamin’s recent request to go home, and the pieces that would need to fall into place to make that happen. I woke up to several messages and emails from people trying to help us in our efforts. People have been so incredibly kind, in so many ways. It’s really overwhelming.

Last night’s episode conspired with Benjamin’s depleted hemoglobin to make him feel exhausted today. He slept nearly all day, and we used the time to work with the Palliative Care team and our nurses to strategize a hospice transfer. After many phone calls, texts and emails between agencies, and an official prescription for end of life care, a plan fell into place. I was so thankful that it included the ability for Benjamin to receive platelet transfusions at home.

Hospice nurses will come visit us tomorrow and answer our many questions. If everything goes well and we are satisfied with the services they can offer us, they will get the orders for Benjamin’s medicines from our physicians, and start procuring the medical equipment he will need. They will set everything up at our house before we are discharged. We think this may happen Thursday morning.

Benjamin’s fever returned in the afternoon, and he received a dose of intravenous Tylenol. When it took effect he felt well enough to sit up in a chair near the bed. He had a craving for fried rice, which Kathy and Gana fetched for him, and he ate a few bites. He ended his longest stretch of wakefulness of the day with a bath. In the tub he asked me about getting his port reaccessed tomorrow. I told him that he didn’t have to go through that again, since he wasn’t getting treatment anymore.  “But it’s still an infection risk,” he said. He is doing everything right.

We received two more gifts of incredible food today. Benjamin asked why there was a meal train again. I told him that it was because people know he isn’t getting treatment anymore, and that he hasn’t been feeling well, and they know what a crazy time this is for us. I told him that it was also because people are just generally so very kind. We are trying to answer Benjamin’s questions as they come, honestly and concisely. We will always be honest with him, and we will always be present.

Benjamin is getting his blood transfusion now, and is sleeping peacefully. We have a lot to learn tomorrow if we are going to take our boy home. I’m so grateful the option exists.

64 thoughts on “Day 768/140

    1. Laura. Thank you for sharing this journey. I wish like so many others I could take a way a piece of your pain. I, obviously , have not had the honor of getting to know Benjamin personally but certainly feel as if I do, in a strange way, through these posts and the wonderful things I have heard from the landscape crew. Your family is in our prayers daily. ❤❤. Sending a huge hug to you!!

      1. Laura, I am in awe of your strength, focus and determination. You have always been a fierce protector of family but to remain so with such grace and gratitude in the face of such hardship is simply overwhelming. Jason sends heartfelt friendship to Benji and we send all the love, support and positive energy we can to you and The Gilkey Family. Wish we could alter course and make it all better. God bless and lots of love.

  1. I wish there was more that we could do for your family. Though I know that prayers are all I can offer at this time. You are a strong mom and I am in awe of the strength you show through your daily words.

  2. I still pray that things may change. It sounds as though Ben has an indomitable spirit. One day, I think you should write a children’s book about ALL and your boys. I imagine it would be so helpful to so many kids.

  3. hope- thank you for teaching me its truest meaning. envisioning you all home with so much love and rainbow star energy surrounding you all.

  4. What a hard road this is. I cannot fathom how you all are doing this. What a brave boy you have. Every bit of love we have is yours. ❤

  5. So greaful that Benji may go home. It is a place where he will feel the love even more. Please know you are all in my thoughts.
    Much love ❤️

  6. We are so glad he is able to go home. What a comfort that must be. Sending you love and prayers and hope for an easy trip..

  7. Thinking of you and your family every day (I’m a friend of Karen & Shawna). Thank you for sharing your story. I’m guessing it’s somewhat therapeutic for you. Hugs.

  8. I know we have never actually met Laura, but I am friends of friends and live here in Sarasota. I’m a physical therapist who works for a home health agency. If you need anything at all, I would come as a friend. Please let me know, I will make myself available at any hour of the day or night. I have a four-year-old and five-year-old , and my heart aches with yours, and I also feel glimmers of hope when you feel glimmers of hope. Your strength and courage and that of benjis, are truly amazing and heartwarming. With love, Susie Balaz Hughes

  9. I am so glad you get to bring your boy home. That must be a bit of a gift. And I know that your community will lift you up and support you even more as you return home. Thinking of you, daily.

  10. The loving walls of your home are being embraced by the whole community of love that is here to comfort and support you. So hopeful that being back in your nest brings Benjamin just what he needs on this journey.

  11. You have done a beautiful job guiding him and will continue to do so as you make the best decisions for him now each day. Love you ❤

  12. Laura, and the Gilkeys, I am so touched and honored to have a window into your bubble. You are doing everything right. Benji is a blessed being and blessing to all of you. I am so blessed to know him through the amazing journey you are taking with him now. I wish you all well as preparations are made to transfer him hoe with you.
    Namaste.

  13. No doubt you all will make the right decision. I’m still so amazed at Benjamin’s strength. Sending much Love and Prayers.

  14. Thank you for sharing your journey – it is such a gift and has touched me deeply My prayers continue for each of you this day
    I know that the Lord is guiding you –

  15. Hail Mary full of Grace, the Lord is with thee, blessed art thou amongst women and blessed is the fruit if thy womb….

  16. I think of you and your family a hundred times a day.
    Your clarity and eloquence is astounding.
    LOVE and hope for peaceful comfort for all of you is my wish … I’m trying to send my light and energy with positive loving thoughts your way.

  17. Oh my goodness.. so many waves you and Michael are on. God be with you as you endure this journey that should not be yours or any parents.

  18. Gilkey family,
    I have been following Benjamin’s transition, as one of your friends shared your blog. You are a strong mother to a strong family. I spent the last year with my granddaughter on 7South . We would come every other week for chemo for her brain tumor. We are in watch and wait now. There are amazing people on 7 South to care for families and children. But as we all know, there is no place like home! I hope everything falls into place for you to take Benjamin home. That should bring him a sense of peace. I will be praying, as I have been, that God will walk with your family through this time.

  19. Praise God Benji is coming home. What a blessing you and your family are. My prayers, my thoughts, my love and hope I know that He can and does preform miracles .

  20. Dear Laura, I am deeply touched by your words, your actions & who you be in the world for your beloved son, family & community and for that I am truly grateful! I am reminded of my mother who died from lymphoma shortly after my daughter was born. In her final days her greatest wish was to be at home, and it broke my heart that we were not able to fulfill this wish for her. I pray that everything comes together to make going “home” a reality for sweet Benji. Sending constant love and prayers for you all. You are doing most important work and a model of love and courage.

  21. Sending much love your way, to you and your family. I’m amazed at your strength and your son Benji’s strength. He should know he is inspiring people all over the nation… the hero that he is. Thank you for helping us appreciate the journey of life. You are incredible Laura.

  22. My husband and I are praying for sweet Beni and all of you. Praying God’s peace and strength and love to surround you all. God bless you!

  23. I’ve been following this leg of your journey over the past few weeks, and I want to let you know that your family is in my prayers. Thank you for being brave enough to share the good, the bad, and the ugly during this time. Awareness helps us to hold each other up a little higher. God bless you.

  24. You and your family are incredible & absolutely amazing………….Thank you for sharing your journey with us……Sending you Hope, Love and Light #benjithebrave

  25. Surrounding Benji and your family with love, light and the ever present comfort of God. Draw comfort in the knowing that Benji is making his transition in his exact right way and at the exact perfect time. Continue trusting that gentle voice within you that guides you through this difficult time. You are loved and supported more than you will ever know.

  26. I hope that Benji’s request to go home is fulfilled and as easy of a transition as possible. Sending love and peace

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