Day 327

Our bags are packed and waiting by the door. The four wheelers and dirt bikes are strapped onto the trailer hitched to Michael’s truck. All of the medicines, supplements, oils and tools we truly need are coming with us. The rest we will leave behind.

This morning began early for all of us. I’m thankful that mine began on the Ringling Bridge, with my friend, watching the sunrise. I came home bearing coffee, and Michael and I split forces. He took Banyan to school and ran some last minute errands for our trip, and Benji and I loaded up for his long day at All Children’s. It felt like it had been an eternity since we did this. It’s only been two weeks. I almost forgot to put numbing cream on his port.

Our ride over the Skyway was so much fun. That sounds strange to say, considering that we were going to get Benjamin three kinds of chemotherapy; but it was. We played twenty questions, watched for birds, played the alphabet game on road signs. We didn’t turn on the radio once.

When we entered the outpatient center, however, Benji began procrastinating. When we got into the elevator, he asked me exactly what he was having done today and what the parameters would have to be for his chemo to be delayed. He was hoping for a delay. I was quick to try and reframe his intention: we hope for quick and effective treatment that brings us closer to never having to come back. That’s the hope.

Things were a little chaotic in the oncology clinic today. Our usual vitals nurse just had a baby, and there were two replacements trying to fill her shoes. Since things were getting backed up on the nurses’ end, Dr. Oshrine was the first to enter our exam room. He was happy to see my boy, and Benji returned the kindness with a much more appropriate sense of personal space than the last time we saw his favorite doctor. We talked about our trip to Georgia tomorrow. I told him we’d mapped out the nearest COG directed children’s hospitals, and that we were prepared with supportive medicines and backup plans. I’m not worried, and neither is he. We discussed Benji’s medications and looked at the rest of his roadmap for this first maintenance cycle. We talked about the new All Children’s Research and Education Center, and what grants Dr. Oshrine would like to see come to fruition. I hope I can help one day. We wished each other a happy Thanksgiving. Our entire family is so grateful for that man.

Next it was Krista, one of our favorite nurses, who came in to access Benji’s port and draw his blood. Here’s where the professional procrastination began (Benji must have just been warming up in the waiting room). Krista and I were patient. In one way, I expect that once-a-month accesses feel easier; in another way, the farther removed they are, the harder they must be to come back to. He squeezed my hand. I told him he was stronger than this feeling. And he was.

On his terms, Benji finally had his port flushed and he proceeded to draw his own blood. He walked the vials over to the pharmacy chute with Krista and sent them to the lab. We waited, and waited, and waited. Dr. Oshrine came back in a while later to report that everything looks perfect. Benji’s platelets, red blood, and absolute neutrophil counts are all healthy and strong. The only blip on Benji’s lab report was an elevated liver enzyme, which is to be expected during nightly 6MP. After last night’s KICKcancER webinar, I was prepared for this and excited to try our new detoxification techniques. Dr. Oshrine said we can discontinue Benji’s daily blood pressure medicine (but monitor his levels weekly), and resume Septra on the weekends instead of the dreaded Pentamidine.

With the blessing of the lab report, Benji’s chemo was ordered, and we waited some more. Michael arrived then. We were both very happy to see him. He excited Benji with photos of the new four wheeler helmet that awaited him in the truck. Finally Krista came in with Benji’s pre-medication, and she realized that Zofran had been ordered instead of Kytril. We let Benji make the choice: try Zofran again (even though it hasn’t worked since April) or wait, and have Kytril administered down in surgery? Benji opted to wait. He knows what works for him. Krista hooked up his intravenous Vincristine and left us alone while it dripped slowly into his veins. Benji didn’t even need his oils today. He found all he needed within himself.

When the Vincristine was finished, we walked down to the Special Procedures Unit. Michael and Benji played an epic game of trash-ketball with bouncy balls while I signed our boy in for his lumbar puncture. They brought us back to pre-op promptly. We didn’t wait long before Michael was kissing Benji goodbye, and I was holding his hand as he was being wheeled into the operating room.

After all this time, Benji was really nervous for his procedure. His lip was quivering and he was close to tears. He doesn’t like the feeling of sleepy medicine. He didn’t want to go. Dr. Grana was in the operating room waiting for him. Her relaxed smile set me at ease; despite what happened during our last hospital stay, the woman has a certain measure of sturdy experience that still comforts me. To calm Benji down, I immediately started reminding him of jokes we’d recently learned. It worked. He was telling jokes to Dr. Grana, to the nurses, to the anesthesiologist right up until the milky white propofol put him to sleep. I leaned down and whispered to him, “Dream of the dirt roads. Dream of the tall pines. We’ll be there soon.”

Michael and I took our buzzer downstairs and grabbed a bite to eat, then picked up the five prescriptions Benji will need during the month-long break we’ll have from the hospital. We went back upstairs to wait. It was perhaps the shortest wait we’ve had yet. We sat by Benji’s bed while he slept off the medicine, then suddenly he opened his eyes wide and said, “Let’s get out of here. I want to go home.”

Benji said it was the best he’d felt yet while waking up from an LP. He also said the thing he dislikes about the sleepy medicine is that it makes him “shake inside his body.” I was nervous he was rising too quickly; he said he was starting to get a headache. But it faded, thank goodness. We have yet to deal with a spinal headache and I pray we never have to. The nurse brought the wheelchair, and before Michael and I could gather our things, Benji was already wheeling himself out of the surgery unit. He was ready to go. He wanted to see that four wheeler helmet. We followed his lead.

Again Michael and I split forces. He took Benji home to rest while he loaded the truck, and I picked Banyan up from school and got the ingredients for a soup Benji requested for dinner. I was so pleased. The soup was an opportunity to make sure Benji had healing bone broth today, giving him the glycine and proline he needs to heal the mucosal lining that chemo attacks. After dinner, Michael and I packed while the boys rested. This was another opportunity for healing; I put castor oil over Benji’s liver and placed a hot water pack over the area for about twenty minutes. This stimulates liver detoxification. I hope to reintroduce milk thistle tomorrow and help bring those liver numbers down even more. Before bedtime, Benji took a detox bath with Epsom salt, baking soda and essential oils, and as I tucked him in I used frankincense, sandalwood and myrrh on his feet. Thank you, KICKcancER.

Tomorrow, bright and early, we will hit the road. We haven’t spent a night away from Sarasota or St. Pete in a YEAR. I’m prepared, but not neurotic. I’m practical, but not worried. Benji is ready. We are all ready. We need to breathe the air up there. We need to walk in the woods. We need to plant our roots back into the earth. We need to sit around a campfire, gazing upward, giving thanks.

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