Day 579

day 579

Over the bridge we went today. Benjamin woke in good spirits, but his tummy was hurting. He was super hungry but nervous about eating. I reminded him that the last time we went to the hospital, he became nauseous from thinking about the medicine. I suggested that this time he take Kytril before we even left the house. He nodded emphatically and took the little pill as I put numbing cream on his chest. Then he begged for a sesame bagel with lox and capers, which I procured for him as quickly as possible–and we were on our way.

We had a new nurse in clinic today. She was very kind. It was the first time in a long time that we’ve had to review not only Benjamin’s medication history but his personal preferences too. No predrawn saline flushes, no adhesive remover, no need to count to three before accessing, he likes to fill his own blood vials, etc. She was patient and gentle and accessed him perfectly. Immediate blood return. Thank you, new nurse. Thank you, trusty port.

The clinic was packed. Benjamin got rearranged on the schedule, which was just fine with us, because it landed him with Dr. Oshrine. In September, our favorite oncologist is moving into the bone marrow transplant unit full time. We continue to feel so fortunate that he was our guy during frontline treatment, when we needed him most. We expect to see a lot more of Dr. Moore in the coming months.

Dr. Oshrine had the genetic testing I’d requested approved by our insurance company. An additional vial of Benji’s blood was taken today. It will be sent off to a laboratory somewhere so that genes can actually grow and copy and do things I continue to be amazed by. The results of this test will take a couple of months.

I went over my concerns with Dr. Oshrine–the sores on Benji’s lips and tongue, his tummy trouble, his recent breakouts, the smell of his sweat. No red flags at all. Everything I mentioned was either super common or not attributable to chemotherapy. The more logical explanation for most symptoms is that it is a thousand degrees outside and Benjamin spends a good portion of his days in the sunshine. He has always been sensitive to heat, since he was really little. It’s just that now, we question everything. We also got the all clear to put Benji on an airplane on Friday to go and pick up his big brother. This was an expected approval, but an exciting one nonetheless.

While we were waiting for Benji’s blood counts to come back and his Vincristine to arrive, two sweet friends from our All Children’s family came to our room to say hello. These little girls are both younger than Benjamin and both earlier in their treatment schedules than he is. They both share his diagnosis. It made my heart want to explode to see their little faces, their hair in different stages of loss, their smiles and wonderful attitudes. Both of their caregivers thanked Benjamin for being able to articulate to them how certain things made him feel. I really appreciated that. He needs to know that he is making such a big difference to so many people.

Benji’s new nurse brought his lab report into the room, and she had a giant smile on her face. Almost too big a smile. She said his numbers looked great, but she’s a bone marrow transplant nurse; she’s used to seeing zeros. When she handed me the printout, what I saw was a significant drop in hemoglobin, red blood count and platelets from last month. I asked her to please bring our good doctor back into the room, when he had a moment. Oshrine was completely unfazed by the drop. None of Benji’s numbers are anywhere near dangerous territory, and he said we should expect these ebbs and flows. I pulled him aside. I pointed at the platelet numbers. A full hundred thousand fewer than last month. “You look for blasts every time, right?” He nodded emphatically. “Absolutely. This is no cause for concern.” I am happy for those bone marrow patients, but I sure will miss the way he can set my mind at ease.

Benjamin’s absolute neutrophil count (ANC) dropped to 2000 this month. That is still higher than the oncologists’ threshold of suppression, so Dr. Oshrine increased Benji’s Methotrexate dosage. He is now maxed out on chemotherapy, at 150% of the “normal” dosage on all medicines. 93 pills in the pill box this week. It’s a LOT, but I feel confident that Benji’s body will continue to tolerate this medicine. It is also comforting to know that he won’t ever get another increase, except for those warranted by body surface area (weight and height).

One number that did make me very happy was Benji’s ALT, or his liver enzyme counts. They dropped almost 100 points. I think it’s safe to say our month of milk thistle worked. This is important because if his liver can continue to tolerate these high doses, and hisĀ  blood counts remain high enough, we won’t have to be put on a chemo hold. That’s the goal.

Benji’s nurses wheeled in his Vincristine and started the drip, and he didn’t complain a bit. While it was coursing through his body, the child life specialist came to visit us. I had brought her a new tally of the Beads of Courage due to Benjamin since his last hospital stay. She’ll get those ready for him by his next appointment.

When the Vincristine was finished, Benji’s nurse brought in his heparin to lock his line, and Benji administered it himself. (This is big. He hates that stuff.) Then she removed his dressing and deaccessed his port, and we were free to go. We said goodbye to our sweet friends and headed downstairs. Before we left the building, we picked up four prescriptions (including a new steroid pulse), dropped off a huge bag full of toys in the donation bin, and placed a Pokemon Go lure at the All Children’s Pokestop. We also stopped by the Special Procedures Unit to pick up an envelope of Tampa Bay Rays tickets for Benji and his buddy Cody, a special gift from one of their favorite nurses. They’ll get to attend a game together in a couple of weeks. The seats are ridiculous. Right next to the dugout.

As we were leaving, Benji said he thought the morning Kytril was a good idea. He felt totally fine, just a little sleepy. We grabbed our requisite sushi and headed home for a rest before our afternoon chores and playtime with friends.

Benji closed his eyes for a few minutes on the drive back over the Skyway. In that space of privacy I allowed myself a moment of release. I allowed myself to appreciate the difficulty of the stuff Benji still has to endure, and will have to endure, for so much longer. I thought of the faces of those two little girls that came to visit him and what they would still have to go through. I thought about the little girl at Southside who was just diagnosed with a brain tumor. Sometimes release comes more easily now than it did last year. I’m grateful for that.

Sometimes it does not.

Tonight I learned that another one of our All Children’s families received devastating news today, about their sweet, beautiful, perfect little baby. I locked myself up to this news. I shut myself down. I don’t want to become desensitized; I want the release, I beg for it. But sometimes it isn’t available to me. My body’s response is to shut down because feeling heartbreak (and fear) over and over again becomes exhausting, and my body recognizes these triggers.

I know what to do when this happens. I reach for the gratitude. But to get to the gratitude I have to find my way around a nasty pile of guilt. It tries to block me, to make me question my boy’s healing. It is a mess and it is hard. So I focus on sending all of the love and strength and prayers I can to this family, and to my own boy at the same time. I stand at Benjamin’s bedside and listen to the sound of his beautiful breathing and the gratitude comes, in huge and satisfying waves.

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