Day 746/118


This has been our longest stretch away from the hospital since October. It’s been sweet, nourishing, comforting, and necessary. And I am so ready for it to end.

Benjamin needs treatment. He is in pain more frequently and for longer periods of time now, and it is all stemming from his spleen. Tonight he said he could feel his spleen in the middle of his belly. It’s overflowing with leukemia cells and filling any abdominal space it can find.  Tomorrow he will have a lumbar puncture with intrathecal Methotrexate in his spinal fluid to protect his central nervous system. Wednesday he will begin a three day round of Cyclophosphamide and Etoposide. These medicines will work swiftly, powerfully, and safely to reduce Benjamin’s blasts and give him relief from pain. 

Benjamin was hurting when he woke up this morning and he got into the bathtub immediately. He came back to bed and rested with a heat pack. He was able to move to the couch to spend time with Sarah and Lotus, and to say goodbye to Banyan, who spent the day with a new friend at a theme park. Benji was a little jealous that his brother is able to enjoy such things when he knows he cannot right now. He wanted to do something fun, away from the house, so we decided on one of our favorite places–Myakka State Park–because he could be very close to the truck at all times if he needed to rest. He enjoyed a nice stretch of feeling well at home before we left. He was able to eat a little bit and play on his electric scooter with his cousin. We loaded up the fishing poles, binoculars, vomit basin and heat packs, and headed to Myakka. Benji reclined in the front seat and rested on the way.

I love Myakka. We all do. It was a good choice; the entire park is driveable, with plenty of wildlife visible from the car window. There is also ample hiking, fishing, and exploring to be done by foot. Our first stop was a sweet little creek that looked like a good fishing hole. Benjamin casted two or three lines, then sat on a nearby bench. He was tired, but he enjoyed sitting there and watching. By the time we got to the next fishing hole, he was hurting pretty badly. He didn’t even take his pole out of the truck. He tried to sit on a log, but it was a short lived attempt; he needed to be in the truck and comfortable. I think I felt my heart breaking a little. If Benjamin was feeling well he would be the last to leave a fishing spot. He didn’t get out of the truck again, not at the bird walk, not at the alligator bridge. Sarah and Lotus said goodbye to him from the passenger side window and headed back to Gainesville, and we left with Benjamin in tears. The pain was on his right side, his left side, his belly, his legs. Everywhere. He fell asleep easily on the drive home.

Benjamin started to feel better as soon as he got comfortable again in his own house. He rested quietly for a couple of hours, then felt well enough to go outside when the neighbor kids came over to play. It didn’t last long. When Benji needed to come in, his best buddy came with him, and they watched videos together. Finally Benji walked to the kitchen, whispering to me with pain all over his face. He really needed to lie down but he didn’t want to hurt his friend’s feelings. He was asking for help. One more brave thing. Of course Benji’s buddy understood and left sweetly, and Benji went straight to bed. He agreed to Kytril for nausea at sunset, and morphine for pain an hour later.

The morphine did its job beautifully. The change in Benjamin was quick and wonderful to witness. He was able to eat a little bit of chicken pot pie delivered by a sweet friend, then enjoy the peace of not hurting for a the next three full hours. When Banyan returned from his adventure, the boys were so excited to see each other, they couldn’t stop talking. Banyan bought a super thoughtful gift for his brother. He said it was the best part of his day. The way they looked at each other tonight was definitely the best part of mine.

13 thoughts on “Day 746/118

  1. Tough to read….an exceptional person Benjamin. Prayers for stability and clearing for his spleen at the hospital. All my love.

  2. What a day.
    Thankful for ways for relief …..
    So brave……
    Prayers and Love….
    I Believe ……….❤

  3. Thinking of you all constantly, praying for comfort …and perfect healing. Praying for an easy lumbar puncture with clear answers. Visualizing the medicine and Benji’s body working perfectly together and kickin’ butt.
    Much love to all of you. Big hugs.

  4. Such wonderful boys. I have no words, but a heart breaking open with appreciation for the love shared between them, and among all of you.❤

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