Day 750/122

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The goal for the day was to help Benjamin feel comfortable. I believe we are getting there. As the day comes to a close, I’m grateful that he feels better now than he did this morning. I am hopeful we are entering a healing, peaceful weekend.

The pattern of the last few days repeated itself, just a little earlier than usual. Benjamin was awake at 4:30am in pain and needing the comfort of a hot bath. He went back to sleep and woke up again at shift change to do the same thing. He agreed to intravenous morphine but vomited almost as soon as it started dripping. As the sun was coming up over the horizon, Benjamin was experiencing vomiting and diarrhea and pain simultaneously.

The morphine made Benjamin nauseous but it ultimately relieved his pain, and he had a nice long midmorning nap. His labs are doing exactly what they are supposed to be doing. His white cell count is down to 5560, his hemoglobin and platelets are staying steady above the transfusion level, his neutrophils are offering him some protection against infection, and his blast percentage has decreased to 60. His comprehensive panels show that his organs are functioning well. Last night’s cultures remain negative.

During rounds I focused most of my questions on Benjamin’s spleen and the pain and pressure it is exerting on everything around it. We talked about several options for pain and nausea, which I discussed with Benjamin when he was awake. We were visited later by the pain team and finally by the kind palliative care physician, with whom I finally agreed to consult. Their suggestions were all creative and thoughtful. Among a few other things, we decided to try a transdermal patch of Fentanyl for pain, so that Benjamin could avoid intravenous morphine as well as additional pills.

Sarah came to visit from Gainesville today. Benjamin slept for much of the time she was here (but they did get to enjoy a few minutes of fun with Snapchat filters). Benji was in serious pain just before she left, so much so that I called the nurse practitioner into the room to make sure there was no chance his spleen had ruptured. I was assured again and again that without external trauma this wouldn’t happen, and that if it did, I would see immediate relief followed by a plummeting blood pressure. Benjamin’s Fentanyl patch hadn’t kicked in yet and he adamantly refused oral morphine for pain in the meantime. He was sure he would vomit after taking anything by mouth. Finally we talked him into a dose of Marinol to try and tackle the nausea. It has always been such a strong ally. It was a big relief to see him take those pills, and they worked.

Michael and Banyan arrived as Sarah was leaving, and they were treated to his most peaceful and pain free window of wakeful time today. He even entertained the idea of a smoothie, which Banyan faithfully procured for him. Once he returned with it Benji only took one sip, but this is a huge step. I am grateful that through careful thinking and trial and error we seem to have a multi-pronged approach that will work for Benjamin’s pain and nausea. Benjamin enjoyed one last nap with his daddy before they left, then he fell back to sleep for the night.

For the next four days Benjamin will only be getting supportive care medicines, either to prevent infection or to alleviate pain. It is helpful to me to be able to stay in the moment, to focus on Benjamin’s present need for comfort and not on the bigger picture I can’t control right now. Seeing him smile is a goal I am happy to work toward. Smile counts, not blast counts, is the number I’ll try and focus on this weekend.

9 thoughts on “Day 750/122

  1. Benji’s skin has a nice healthy color in this sweet picture. I talked to God so many times today about Benji. You guys were our conversation at date night. I am sending my love and healing energy and so many prayers every day throughout the day. I think about you constantly. I feel guilty (and so very grateful) for my easy life with these healthy kids. You are so strong and beautiful, Laura Gilkey. I am inspired by your grace and strength every day. I hope to see Benji’s incredible smile tomorrow.

  2. Comfort to my beautiful family….
    Every mile today brings us closer to where we
    need to be…. coming home
    Prayers and Love
    I Believe……❤

  3. Always thinking of your family. Prayers, hugs and positive thoughts being sent your way. I hope there’s lots of smiles today.

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