Day 123

It’s been a very long day. I’m lying in bed next to Benjamin, who is resting peacefully. Finally. Once again I feel grateful for this blank space to sort this out. Gratitude will come.

Michael left for work before dawn, and his mother arrived at our house before we dropped Banyan off at school this morning. I was thankful she could join us on our trip over the Skyway, and proud to show her the grace and humor with which Benjamin handles his now familiar hospital routine.

We took a gamble and skipped the finger poke, opting instead to access Benjamin’s port for his complete blood count (CBC). We felt sure he’d make counts, and with everything he’d go through today, I’m glad we spared him one more poke. I also wanted the blood drawn by port so we could get a comprehensive panel as well as the usual CBC. This would give me a baseline of numbers that indicate kidney and liver health going into this phase, so we’ll have a point of comparison.

Benjamin made counts easily with an absolute neutrophil count (ANC) of 994. I had many questions for the oncologist, as we are entering a new phase, Interim Maintenance, and I wanted to be sure I understood everything. Our oncologist was Dr. Lee, the sarcoma specialist. He answered all of my questions patiently and adeptly. He’s very familiar with methotrexate and its toxicity release, and with leucovorin, its rescue drug.

The nurse gave Benji Zofran preventatively, and we requested numbing cream for his back. We had been told this could reduce the amount of pain, and therefore of necessary propofol, during lumbar punctures. We were cleared to head down to surgery.

Registration took much longer than usual; the number on Benji’s orders didn’t match the number on his identification bracelet. It was a simple error. The dates weren’t matching up. But it was a reminder that humans make mistakes. I felt hypervigilant. I was grateful that Grammy kept Benjamin brilliantly entertained by having an epic paper toss contest in the waiting room.

We headed back to pre-op. Michael arrived just in time. We were going over everything with an anesthesiologist we hadn’t met before. The team started IV fluids in pre-op. This isn’t usually done before a lumbar puncture with intrathecal methotrexate, but Benji was also scheduled for high dose intravenous methotrexate later in the day. The two need to be given within six hours of each other, and the higher dose requires significant hydration to achieve urine that indicates the kidneys’ readiness for the medicine.

When it was time to go back to the operating room, Benji said goodbye to his daddy and Grammy, and I walked him into the room. I was grateful to see Dr. Moore there. I held Benji’s hand and kissed his head, and thanked the team who now hovered over his sleeping body. That sight will never be easy to see.

I rejoined Michael and Kathy, and we divided and conquered. I took the buzzer and the three bags we’d brought in with us to the seventh floor, and they went to my car to collect the rest of our things and then meet me upstairs. I was happy to see that we have a Skyway view from our window again. I hung the rainbow maker on the glass.

We went down to greet Benjamin when he woke. There was no usual post-op explanation or discharge process, as we were heading upstairs to be admitted. I did request the exact time of the LP (12:41pm) so we could watch the clock, as we were now in our six hour window.

The afternoon was relaxing. Our nurse was wonderful. She ordered Benjamin’s vincristine and high dose methotrexate from the pharmacy, and we waited, hydrated, and built Legos with Grammy. Benji began to complain of back pain when he’d try to get up. It was mild at first, but got increasingly uncomfortable as the day grew late.

I was watching the clock. I knew that the high dose methotrexate needed to start by 6:41pm, and the vincristine needed to drip first. Neither could happen until Benjamjn’s urine reached a certain specific gravity, and despite the hydration, it wasn’t quite there. We were cutting it uncomfortably close. While our nurse was on the phone with Dr. Grana getting her opinion on a.) Benji’s back pain an b.) whether to go forward with the methotrexate, we coaxed Benjamin into drinking two giant cups of water.

Dr. Grana had advised moving forward on the methotrexate to try and stay within the six hour protocol. She said the pH in his urine was favorable, and his specific gravity was so close. I told the nurse that we agreed with that decision but asked her to please check the urine just once more. This time it was perfect.

With all green lights given and time quickly running out, the nurses went into performance mode. Three of them strapped on their chemo scrubs, one preparing vincristine, one preparing an introductory blast of high dose methotrexate, and one preparing the rest of the high dosage that would drip over the next 24 hours. They lined them up to be administered one after the next. The high dose methotrexate began at 6:46, just five minutes past our window. I was very happy with the timing and appreciate those nurses so much.

Michael and Kathy left soon afterward so that Michael could relieve Gana and be there when Banyan returned home from basketball practice. The moments when his daddy leaves are so hard for Benji. I know how hard they are for his daddy, too.

As the night progressed, Benjamin’s back pain became almost intolerable. I had to get a wheelchair to get him from the bathroom back into bed. Finally, he accepted Tylenol from the night nurse.

Benjamin is learning so much, and he knows that medicine can be dangerous if you take it when you don’t need to. I believe that this notion, combined with his need for control wherever he can get it, is at the root of his aversion to pain relief. We talked a lot about how those medicines work and when they are appropriate to take. I hope he understands. When I look at the three bags of fluid hanging near his hurting body, with their neon colors and tangled tubes, I find it so ironic that it’s Tylenol he doesn’t want to take.

Once Benjamin finally settled into a restful position with some television, I spoke to the night nurse. I told him how uncharacteristic this was for Benjamin; that he’s had several LP’s with zero reaction, and rarely cries from pain, not even through twenty-four erwinia shots.

I looked at Benji’s back again and saw two holes. I knew that last week’s bone marrow aspirate was close to the site of the lumbar puncture, but I was certain that had healed by now. I asked the nurse if it was possible that he had been punctured twice today. She said she could look it up on his report from surgery.  She walked over to the computer, and after clicking through a few screens, she looked at me behind Benjamin’s back and compassionately held up two fingers.

I got up to read the report. The first puncture drew blood stained spinal fluid. A bad tap, so to speak. They chose another spot, between two different vertebrates. I felt so angry that no one had told me, or considered at that point that pain medication might be appropriate. I texted Michael, my wise and calming husband, who reminded me to be present for Benji’s pain now, and to wrap him with love. That’s what I’ve been doing ever since.

I have released anger. It has been explained to us several times that there are two spots into which they can inject intrathecal methotrexate. If one spot isn’t cooperative, the other is needed. This is their job. However, it is my job to advocate for my son. I will speak to the oncologists about this tomorrow. His pain could have been prevented.

Benjamin took his first dose of oral chemotherapy and another dose of preventative Zofran before falling asleep. The night nurse just came in at midnight to check his vitals. She has seen what he’s gone through tonight, and decided the vitals could wait. God bless her.

I give thanks for this strong and mysterious medicine that is working its way through Benjamin’s body, finding the leukemia cells that are hiding from detection. I give thanks for the hot tea with honey I’ve just had and the comfortable clothes I’m in. I give thanks for skilled and compassionate nurses. I give thanks for my family, and for my sweet and sage husband. I give thanks for my voice.

10 thoughts on “Day 123

  1. i loved hearing Michael’s words- he’s a gracious man, just like his father. Thinking of you all
    Karen

  2. I give thanks to you Laura. You truly are an amazing woman. You have taught me so much through this journey. Benji is so blessed to have you as a mommy. Hugs and kisses to your brave boy.
    Shannon

  3. You both are so strong and I am so impressed with your knowledge concerning these steps. My prayers will be with you all. Much Love, Aunt Kathy

  4. YOU are so brave. And so is your boy. What stuck out to me today is your ability to transform your desire to snap off some heads of with your words into gratitude for your VOICE. Bravo mama. I’m so sorry about what happened with the double puncture/no increase in pain med/communication breakdown though. I’m so glad you’ve got his back.

  5. Oh, there is so much in this post that I can relate to. My heart breaks a little every time I leave Clara sedated on that table; it has not gotten easier. Thinking of you and Benji today, prayers for strength and comfort.

  6. REMEMBER YOUR BENJAMIN DOCTOR 🙂
    NO ONE KNOWS HIM BETTER THEN YOU .
    YOUR HIS VOICE WHEN HE FEELS PAIN .
    BEN THE HERO !!

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