Day 291

We are HOME. I don’t think this blessed event could have waited a single day longer.

This morning’s blood draw was kind of the last straw for Benji. Our night nurse forgot to draw up his fresh saline flushes. We were both sleeping when she hooked his line up to the preservative-laden prefilled variety. He woke up crying and upset. It was such an appropriate metaphor for the past three weeks. Those flushes make Benji feel miserable, yet their use is entirely preventable. He asked to take a bath when it was over. The sun wasn’t up yet, but Benji didn’t want to go back to bed. He said he wanted to be “up and out.” It was time to go home.

I didn’t wait for rounds to get the good word. I brewed the morning coffee and started taking everything out of the cabinets and off of the walls. Benji wanted to help me. We couldn’t get it all packed up fast enough. In the past, I have waited to pack until we hear the word discharge, because I didn’t want to “jinx” our departure. Today, I didn’t care. I felt certain we’d hear that magic word, and if we didn’t, to be honest, I was prepared to fight for it.

Benji asked to warm up a leftover bagel for his second breakfast (after his Fruit Loops, of course). He couldn’t have timed his request more perfectly. The decision to send us home lay in Dr. Grana’s hands this morning, and she and her team were holding morning rounds outside the room next door. Benji and his bagel marched out of our room in sock feet, no IV pole in sight, and interrupted the doctors’ circle with a bee line toward the microwave like he owned the place. Dr. Grana and some others in the circle hadn’t seen Benji in ten days or so. Their expressions showed a satisfying combination of surprise, relief, and admiration. Benji had just unintentionally made the best possible case for his own discharge.

We were next in rounds. I approached the conversation as if going home was a foregone conclusion. Fortunately, so did they. Dr. Grana and I talked about which medicines we’d need to continue at home and which we could give as needed. We discussed follow up appointments with various specialists. Finally, I brought up the outpatient meeting we would need to determine Benji’s treatment path moving forward.

Had Benjamin not experienced Methotrexate toxicity, he would have had two additional escalating doses of the offending medicine by now, as well as a dozen more Erwinia shots. The decision moving forward is a tough one. Our options are to continue as planned but with rescue provisions in place (like serious hydration and Leucovorin), or to eliminate this part of treatment altogether. There are also considerations to be made during long term maintenance, as Benji is scheduled to have Methotrexate orally and intrathecally every month until May 2018. We stand at a critical crossroads. I told Dr. Grana that I wanted Dr. Oshrine to be present at this meeting, and that I would appreciate her input as well as Dr. Moore’s, who was his diagnosing physician. I told her that Isaac had mentioned contacting the Children’s Oncology Group protocol director, a move I strongly encouraged.

Dr. Grana’s response left me with yet another loss of confidence. She told me that she and the team had talked about Benjamin’s case unofficially several times, and what would probably happen is that he would move straight to maintenance, and that they would discuss whether to follow his oral and intrathecal Methotrexate with Leucovorin in the coming months. She said, and I’m paraphrasing, that this (Interim Maintenance 2) phase hasn’t really been proven to give much benefit anyway, even to high risk kids like Benji.

Um, excuse me?

I have been under the impression for months now that this phase, along with the more aggressive chemo in the phases preceding it, were a direct result of statistically based study. That this treatment was what works for high risk kids like mine. It prevents their relapse. And now you are telling me that this entire two month phase was added on without proven benefit? Just for the hell of it? This phase that has poisoned him? This phase that has had me asking your nurses whether we belonged in Intensive Care, or perhaps at another hospital in another state?

I understand that Benji isn’t fitting the typical leukemia patient mold with this Methotrexate reaction, and that clinical studies are scarcely populated and scarcely funded to inform cases like these. But it isn’t exactly reassuring to be told that he was given an entire phase of treatment that had no proven benefit. My thoughts on this continue to evolve as I step farther away from the hospital. My focus this morning was on coming home, and without the entire team present, I wasn’t going to ask these kinds of questions during rounds. We have a meeting scheduled for Wednesday with Benji’s care team, including Dr. Oshrine. Michael will be joining us. We will need the time between now and then to collect our thoughts. We will be placing some serious intentions on clarity for all involved at that meeting.

Michael joined us for the discharge procedure and to help us load the wagons and exit the seventh floor. Before he arrived, Benji’s port was deaccessed. While this act meant his freedom, it was an uncomfortable sequence. His needle didn’t want to come out. There were more tears, and another comfort bath followed. Benji seemed so down, even though he was free. It seemed like now that the idea of being home was so close, it couldn’t come fast enough.

When we finally left All Children’s Hospital, we were rewarded with the most gorgeous October day. We drove with the windows down until we reached the Skyway, where we could see dozens of kitesurfers braving the gusty winds. Benji slept and I sang nearly the entire way home. The tears find me in unexpected places; today, it was in a gospel hymn on the radio as I passed the neighborhood park near our house. How many times have I lay on that grass with my babies, watching ducklings and turtles and flocks of ibis birds. Too many to count.

Michael took the afternoon off and helped Benji to get comfortable in his space. Kathy and Gana had made sure there were clean sheets on our bed, and our laundry was clean and folded. I unpacked the many hospital bags and enjoyed tending to mundane tasks like loading the dishwasher and going through the weeks of mail. When it was time to retrieve Banyan from middle school, Benji didn’t want to part with either of his parents, so we all took the trip together. Banyan climbed into the back of the truck and sat as close to Benji as he could.

I gathered Benjamin’s prescriptions from the pharmacy, purchased a home blood pressure cuff for nightly monitoring, and picked up Vietnamese noodle soup for dinner, per Benji’s request. After we ate, Benji bravely decided to venture out into the street with his brother and greet their neighborhood friends. Much credit to the children on our street: they all seem to approach Benjamin with the exact perfect mix of warmth, compassion, excitement and normalcy. It doesn’t matter that he’s been gone 24 days, or that his skin looks different. No one grilled him with questions. They just offered him a nice place to sit in the grass, a place to enjoy a gorgeous October evening.

6 thoughts on “Day 291

  1. Oh Laura, I am SO grateful to read you are & Benji are back home!! I am also so tore up about the comments made about this phase and the “unnecessary” undertones however I have a strong feeling this path was laid out for the fiercest woman I know because a much higher power knew only a special team like you & Benji could make big changes for families fighting leukemia. I’m just sorry you’ve had to travel this road but I can already see the impact you guys are making on the world..thank you for another blog post that shapes my frame of mind every single morning & welcome home guys!!

  2. The perfect wave that carried you both through this storm, and landly you safely on your shore on this perfect October day, will bring you perfectly to the next phase, and perfect healing.

  3. I’m not sure I like Dr. Grana’s opinion. I know you Laura & Michael and you will keep your guns loaded to make sure right decisions are made for our Brave little boy. So happy you guys are home. Sending Love, Prayers & Hugs.

  4. Blessings are all around you with the loving village that has gathered and circled the wagons to welcome you both home. Sending light and gorgeous October weather to settle you back in your nest. ❤️

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