Day 41

Day 3 of Consolidation.

Benjamin woke up and immediately said he felt like he had to throw up. I knew to expect this, and thought it was the Cytarabine catching up with him. I quickly gave him Zofran. I’ve heard from cancer patients, caregivers and severely ill pregnant mothers that Zofran is a miracle drug. It certainly worked like one this morning. Benjamin bounced right back, ate breakfast, dressed himself for the weather with knee high orange socks, and we were out the door.

Benjamin slept extremely well last night, and his dexamethasone mood swings have dissipated so much. He had a terrific attitude and a rosy disposition. It made for a great trip up, an easy clinic visit, a lovely lunch together and a smooth ride home. It’s so purely wonderful when he’s himself.

It was the first Wednesday we’d been in the clinic, so we had a new nurse and a new Physician’s Assistant. Benjamin’s vitals were collected, we were asked the usual questions about medications, then the chemo routine commenced and his 15 minute Cytarabine drip began. I compiled my own questions (our lists are much shorter now that we’re going up four times a week instead of one). First, I asked about the pupil dilation I saw last night (and again today). The PA said this wasn’t a usual side effect of any of the medications. His pupils weren’t dilated during the appointment; she did a pretty thorough eye examination and assured me this was nothing to be concerned about. Then, I asked a question that occurred to me only after reading another mother’s orders from her doctor upon administering 6MP. This mother was instructed to wear gloves when splitting the pills, to put them in paper cups when giving them to her child, and to wash hands thoroughly after each administration. Our nurse today agreed that this was best practice. It’s the first I’ve heard of it. Overall, the nursing staff at All Children’s has been fantastic–but this isn’t the first time the moms’ groups have come through with key information for me, and it won’t be the last.

Chemotherapy is medicine that is designed to kill cells. Period. It only makes sense that those of us that don’t have cancer would want to protect ourselves from it, in all its forms, whether it’s spilling from a tube as it drips into our boy’s veins, or hiding in his urine as we collect it for measurement, or sitting innocuously in a pill box on our kitchen counter. However, there is something simply not right, intellectually, about treating a medicine with blue-gloved fear and then handing it to our son to swallow. Benjamin doesn’t need fear. This, again, will be a balance I’ll have to find. Cute paper cups with puzzles on them is a start. The blue gloves may have to be donned privately.

Tomorrow we will visit All Children’s for the last time this week, God willing. Benjamin will get his last dose of Cytarabine, he’ll get a complete blood count, and if his neutrophils are high enough, we’ll keep his routine dental cleaning for the afternoon. (Oral hygiene becomes extremely important during this phase. Mouth sores are common. So far, we’ve escaped this side effect with a homemade mouthwash of sea salt, baking soda and warm water, rinsed once or twice daily.) Before we go home for three days, they’ll de-access his port. He’s happy about that. He’s done quite well with it, but the tape becomes itchy after a while.

When we came home this afternoon, we made gorgeous Valentines from Benji’s artwork for his classmates, and waited for his teacher to come for her weekly visit. He was attentive, happy, and focused nearly the whole time she was here. In addition to Benjamin’s weekly schoolwork, his teacher brought a giant gift basket from another first grade class. Her stay was followed by a delivery of fresh bread and homemade minestrone, and a friend depositing a happy Banyan from chess club. There were four packages and three cards in today’s mail. We continue to be overwhelmed by the unconditional kindness, deep nourishment, and many gifts swirling around this house, protecting us, keeping us strong, and smelling delicious.

6 thoughts on “Day 41

  1. Just want to let you know that I read every post, every day. I ran on Sunday morning, whined almost the whole time, but Benji came into my head near the end. I powered through with your mantra – “Perfect blood. Perfect bones.” I will dedicate every run to you, Banyan, Benji and Michael. xo – Jen

  2. You remind me of my own experiences when you talk about the mom’s group and chemotherapy vs. other meds. After I gave birth to my daughter, I learned infinitely more from the La Leche group than I did from my pediatrician.

    I had chemo for six months after my mastectomy. En route to my chemotherapy shot, I always thought how ironic this is: I’m feeling fine and I’m voluntarily walking into a doctor’s office where I’m going to get a med that will make me feel horrific in a few hours.

  3. I was taught that when giving homeopathics, it’s best not to handle them. So when we give them they go straight from the bottle… To some other receptical… To mouth. We always told the little kids it was so they would work best. Maybe an explanation like that would suffice?

  4. We recently heard about what was going on with your family and I wanted to let you know that we are all praying for him as well as your family. Charlie and Morgan have diligently been asking God to “make him feel better”. You are a brave mom and we will continue to pray for their baseball buddy Benjamin the Brave!

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