I haven’t slept much this week. I’ve only slept in my bed once, and not because I haven’t been home for a break or because I couldn’t, but because subconsciously I just don’t want to be comfortable. I watch this kid go through so much every day and I think I am trying to avoid the guilt of feeling comfortable myself. I sleep sideways in a chair next to his bed without pulling out the footrest. On the nights I am home I sleep on the sofa instead of my bed. My mind, body, and soul are restless.
Yesterday he had another spinal tap. The results came back negative and showed no cancer cells in his spinal tract, so I was happy about that. He needs to get 3 negatives in a row in order for them to stop the spinal taps. He has another one tomorrow, and then one next Wednesday.
In the late afternoon he had another chemo treatment, this time with a stronger medicine.
He hates the hospital food so for dinner I ordered him a burger and Oreo milkshake. He ate like a champ and said he felt stuffed and tired afterward. He became very sleepy as the night wore on, and I assume part of it was from the chemotherapy.
I performed my usual routine of trying to make him laugh with stupid antics and jokes, and I asked him if he had facetimed his friends. He often doesn’t want to be bothered he just wants to sit and vegetate which is so unlike him. I remind him every day that it’s important for him stay connected with his friends because they’ll distract him and lift his spirits.
At bedtime he used the two separate anti-fungal mouthwashes which he has to rinse with a few times a day because of the chemo, and then he went to sleep. I went to the family room down the hall and made a few personal phone calls. I returned and sat in the chair next to his bed. The room was dark, and I just sat quietly as I do every night, wondering how we got here. I prayed, and kept my nightly negotiations going with God. And for a little while I dozed off.
I heard him moving around and woke up to see what was going on. He was standing in the dark next to the bed changing his clothes because they were sweaty. He’s such a thoughtful boy, he didn’t even try and wake me up. I told him he needs to wake me up no matter what he needs. I wiped him down with some baby wipes and helped him change and get back into bed.
It’s morning and I only slept about two hours. The sun is up and shining broken rays through the big windows next to us that are all covered with posters and cards from his friends. He is tired and sleeping later than usual. I crawl into the bed behind him and put my arms around him kissing his ear and the back of his neck, stroking his hair while he sleeps. I love this kid so much it hurts. I wish I could carry this burden for him. There’s nothing I wouldn’t do. I’d die for him.
I shuffle down the hall to get a coffee, and then I return to the chair next to his bed opening my computer to start my work day. I let him rest. The nurse comes in and tells me there is a possibility of him coming home next week. Yesterday I spent two hours speaking to his nurse case manager and the doctors about what his home care is going to look like. He lives with me full time and alternates every other weekend at his mom’s. Fortunately, I work remotely so I will be able to handle him. He will not need intensive care. He’ll go for chemo once a week and it’s more about making sure his medicine schedule is perfect and that he is observed regularly for any signs of infection etc.
I am beginning to feel less worry and more determination. This kid is going to kick the shit out of cancer, and this is going to just be another badge on our family coat of arms. I am so grateful for all of the telephone calls, texts, and emails. Ray Nelson, a friend I met through coaching football called me yesterday. I’ve only known him a few years and was humbled by his empathy. I spent almost an hour on the phone with this man that was a complete stranger a few years ago. It’s instances like this that strike me as amazing. They make you not lose your belief in humanity. The authenticity and concern are heart-warming.
There have been dozens of examples like this over the past week. Thank you all. That’s what love is about, being there not only to share in life’s joys but to ease the pain of your friends and family during hardships. It is appreciated more than you know. My children and I will always be there for you on the flipside.
#SullyStrong
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