Day 165

I stayed up too late last night getting ready for today’s probable hospital admission. I’m glad I did, because I overslept this morning and had no time for last minute preparations. We had a quick breakfast and loaded the car, and made it to the All Children’s Outpatient Clinic just in time for our appointment.

Benjamin made counts easily, with an absolute neutrophil count (ANC) of 1,060. I was thrilled. He was not. He knew that meant his port would be accessed, his line would be flushed, and we would be admitted. I reminded him that this is our last planned admission, and to try and be grateful for the medicine, grateful for the healing, grateful to have this phase almost behind us. His tummy started to hurt. I think it’s fair to say that he is now susceptible to anticipatory nausea.

Banyan was such a tremendous help today. He loaded my car. He kept Benjamin entertained. He helped me get the wagons from the front desk and pile them high with our bags once we were cleared to head to the seventh floor. When I had to pop into the registration office on the way upstairs, I gave Banyan some money and he took Benji to the cafeteria for a sandwich. He made me laugh. I loved having him here with us all day.

I’m a big fan of our room this time; it’s the closest yet to the water, and directly across from a nurse’s station. We unpacked, settled in, and got Benjamjn hooked up for the prehydration necessary to receive high dose methotrexate. I’d requested a road map for Benjamin’s next phase of treatment (Delayed Intensification) during our clinic appointment. The boys picked out a movie to watch, and I sat down with the roadmap, my book, and my moms’ group to research.

I am made constantly aware of how beautifully Benjamin is responding to his medicines, in reading about children who aren’t. It is a hard dose of gratitude to swallow. While researching, I saw a post from a scared mother whose child’s medicine has to be stopped, for reasons so terrifying I don’t want to write them. It makes me feel so lucky, and then immediately guilty for feeling that way.

I pray love over fear for these families. Love is stronger. It makes me so proud that Team Benji the Brave raised enough money for more than a week of pediatric cancer research at yesterday’s lemonade stand. That means less fear, and more love.

After the kids’ movie was over, we went to the play room for some air hockey. Michael arrived a little while later, around the time we expected Benji’s urine to clear its benchmarks for pH level and specific gravity. Benji’s first sample showed a good pH, but his specific gravity was still a little high. His next sample showed the opposite. His pattern continued unpredictably. Additional fluids were ordered. We were confused.

Our nurse was fabulous, and decided to rule out any error by sending a sample to the lab downstairs to compare it with the machines on the seventh floor. There was a definite discrepancy. I was glad to have this comparison; it would ensure that Benjamin wouldn’t get the methotrexate until both numbers were where they needed to be.

We were visited today by the Clinical Manager for the Hematology Oncology department. She spent a lot of time with us, asking questions about our experience at the hospital, making sure we felt like our questions were answered and our voices heard. The informed consent champion in me was doing cartwheels. I told her we felt so well taken care of here that at yesterday’s lemonade stand, Benji had “ACH ROCKS” painted on his arm.

She wanted to know more about the lemonade stand, and I showed her pictures. She wants to use them for the All Children’s newsletter! I told her about the bake sale leftovers, and Benji’s desire to give cookies to the children on the floor. Some kids are on special diets, others are profoundly neutropenic, and a few have had bone marrow transplants recently. So we decided to give the homemade treats to the nursing staff, and they would then offer the individually wrapped store bought goodies to the kids. I’m grateful he can share some of the sweetness of yesterday.

Kathy, Gana and Uncle Bob brought us another yummy meal and stayed for a visit and some Old Maid. The shift change came and went while they were here, and Benjamin still hadn’t cleared his urine benchmarks by the lab’s standards. Over the course of the evening he received two extra sodium chloride boluses and one extra sodium acetate bolus. This, plus the usual prehydration, and lots of water throughout the day by mouth.

Finally, after nine hours of maximum hydration and then some, Benjamin’s 10:30pm urine sample cleared. Our night nurse got the results and immediately prepared his Kytril, vincristine, and methotrexate. Benji also resumed his oral chemotherapy (6MP) tonight. The nurse donned her blue chemo gown as we watched the last game of the Stanley Cup Finals. The methotrexate began its 24 hour drip just before midnight.

I’m thankful for this medicine and for Benjamin’s tolerance of it. I’m thankful for this nursing staff and for their ingenuity. I’m hopeful that Benjamin can leave this hospital stay and this Interim Maintenance phase with a sense of pride, and a comfortable body. We are more than halfway through with “frontline” treatment. He’s doing so well.

2 thoughts on “Day 165

  1. Dear Laura: I feel so good that I could see you, Michael, Benji and Banyan on Sun. It was great to be there.

    My love to all–


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