Day 723/95


We. Are. Home. Until Monday morning, I will relish every sound and every smell and every breath in this house.

The decision to come home was very much a last-minute one. I was up before the sun, unable to sleep, wrapping gifts and nervous about the day. Benjamin was still sleeping at shift change when I tiptoed over to the computer. The lab numbers all pointed beautifully toward Sarasota. Benji’s blast percentage inched down a little but so did his total white count, which means the absolute number of leukemia blasts is smaller than it’s been in quite some time. Even more encouraging for a leave of absence was his platelet count, which was at 10,000, holding pretty steady for the second straight day.

When Benji woke up he felt good. Strong. He didn’t wince or complain. He looked around the room pensively. He knew there was a decision to be made. It really all came down to whether he felt he could drink enough to stay hydrated, take in a little bit of nutrition, and keep his pills down. It sounds so simple, but for him, it was monumental.

The pills almost kept us admitted. Benjamin vomited just seconds after he’d taken his morning medicine. I know how upset and painful his tummy is right now, but I also think he’s scared, and his anxiety isn’t helping. I called our nurse and asked her if his many medications could be combined into capsules, and she said absolutely. She was so helpful. She got me a pill crusher, sleeves, and three different sizes of capsules. I practiced with the dose of medicine he’d missed due to the emesis. He kept the capsules down beautifully.

With that victory and a few small sips of water and ginger ale, the decision was made. Benjamin was nervous but excited. We both were. Michael and Banyan came to help us load up. I packed the wagons and they wheeled them to our vehicles while Benjamin received a healthy dose of platelets. Even though he was above the transfusion threshold, the team wanted to be sure he’d be safe over the weekend.

I could open a miniature pharmacy with the medications and supplies I brought home with me. I went over everything carefully with our nurse practitioner and made sure I knew what I was doing. Benjamin’s platelets finished their infusion, his port was deaccessed, discharge papers were signed, and we were free to go. I found myself quite emotional as we left our sweet nurses. I will miss them, but it’s not that–we’ll be back on Monday–it’s how happy they all looked for us, for Benjamin. They care about his well-being way beyond the call of duty.

Benjamin rode with me, and we followed Michael and Banyan home. Everything outside looked crisper. More punctuated. Benjamin vomited once, on the Bradenton side of the Skyway. We all pulled over into a residential neighborhood and worked together to make him comfortable. Then we went home.

Home. We hadn’t seen home in 54 days. There were fresh flowers in the yard and happy dogs to greet us. There were brand new sheets on our family bed to give Benjamin’s body rest. Love was everywhere.

Benjamin felt pretty awful for the first few hours we were home. He vomited again and couldn’t eat or drink anything. At first, he didn’t move through this house as easily or robustly as he did a few months ago. He looked even more small and pale to me here, outside of the hospital walls, in this home that has seen him so healthy. But he is feeling better by the hour. Home is so healing. It is so wonderful to care for him here, in his own bathtub, in my own kitchen, in our own bed. It is so wonderful to hear him laugh here, with his daddy, with his brother, just because. It took me the better part of the evening to crush and capsulize all of his medicines. Part of me wanted to throw them all in the toilet and just let him be. 

Banyan has been absolutely amazing. He has encouraged Benji to drink water by offering him incentives in a video game they play together. He has helped load and unload, feed and water, entertain and comfort. He has been Benjamin’s greatest source of joy and has hugged me about a million times today. When he saw me feeling happy, he said, “I think it’s going to be a great Christmas.” When he caught me in the kitchen fighting tears, he said, “I wish things could be better.” He is so good. 

I’m so grateful for these moments with these people that I’m afraid they will slip away too quickly. It’s hard not to be scared when something feels so precious. As on every Christmas Eve, I draw strength from Mary. At only fifteen, she was surely terrified of the task ahead of her. But she kept her reverence. She maintained her awe. We are home for Christmas. I am treasuring up all these things tonight and feeling so grateful my heart is about to explode.

Luke 2:19 “But Mary treasured up all these things and pondered them in her heart.”

18 thoughts on “Day 723/95

  1. Both kids are amazing. I love y’all so much and pray you will have a Merry Christmas . I know how you feel to be home. Much love and prayers

  2. I have been praying along with all your hopes and desires. I literally have begged God on your behalf to bring Benji home for Christmas. Tears are in my eyes and on my cheeks as i read this today. Merry Christmas to Benji and a great family. In all my preaching this Christmas the verse you quoted was also one of the most quoted verses in my sermons. Mary was a ‘together’ young woman who ‘pondered’ what had been told her by the Angel. She was going to have a child and she was to name Him Jesus and He would be the Savior of the world. I will be praying all day that this will be a great Christmas for all of you. Merry Christmas!!!

  3. I have been praying for this! Among many other things for you, your boys and husband. Hope you have a blessed Christmas and New Year

  4. I am so happy to hear you went home for Christmas.!!!! You are a very strong family, I can only imagine how tough this is, but how wonderful it is to be home, if only for a short while. There is no place like home especially for a well needed energy boost for the soul.
    I have been keeping you in my thoughts and prayers and I know God is watching over your family. With God on your side and all the love, support and prayers that are surrounding you , this will keep you safe and get you through this until you can all be back home together permanently..

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