Day 32

We headed back up to All Children’s today, this time for a follow-up visit with Benjamin’s cardiologist after the echocardiogram he had in the hospital. These are a matter of routine for chemotherapy patients, as some of the medicines he’ll take–specifically during the Delayed Intensification Phase (about three months from now)–can affect heart function. During that initial EKG, there was a suspicion of a small Patent Ductus Arteriosus (PDA), so we scheduled a follow-up appointment for a closer look, and a more accurate baseline heading into the next phase of treatment.

We sat for a long time in the cardiologist’s exam room, but Benjamin was in high spirits, keeping us laughing through most of the wait. The doctor came in to talk to us about general heart health during chemotherapy, and what she’d be looking for in the follow-up EKG and ultrasound. Then the technician took us to the sonography room and took a bunch of pictures of Benji’s heart. Benjamin was so strong through the discomfort of goop all over his chest and belly and a hard wand pressing into his skin for 45 minutes. He fought tears at one point, but remained still and quiet, understanding that he had a hand in making this process go quickly. Once he was wiped clean and dressed again, the laughter came back.

During the ultrasound, the technician asked the cardiologist to come into the room to be sure she’d gotten the necessary images. The doctor took a long turn with the goopy wand, searching. We knew they were looking specifically for the suspected Patent Ductus Arteriosus. Patent means open, and the Ductus Arteriosus is a vessel that we are all born with. It connects the aorta and pulmonary artery, and in most people, it closes shortly after birth. For some, it takes a few years; for others, it closes almost completely, but leaves a small hole. From our research, we know that a PDA is often a non-issue needing little to no intervention. But sometimes, if a PDA is big enough, the extra blood flow created by the open vessel can tax the heart abnormally and enlarge it. Some cases can require open heart surgery. Michael and I exchanged worried glances on the walk back to the exam room. It was hard not to be concerned when the technician AND the cardiologist had such a hard time discerning what they were looking for.

We were quickly reassured. The doctor said that from the photographs, she feels fairly certain that Benjamin does have a PDA, but that it’s so small she can’t be 100% sure without a heart catheter. We wouldn’t have known about it at all if not for the routine EKG in the hospital, and the only risk associated with such a small opening would be an increase for possible infection, due to the tiny bit of extra blood flow from the lungs back to the heart. She said this increase in risk is less than 1%. She suggested that we consider an intravenous procedure to close the vessel, but not during chemotherapy. The increase in risk of infection from the PDA would be far outweighed by the risk of infection from another procedure at this point, albeit a very low risk procedure (nonsurgical). The doctor wants us to follow up with her annually throughout his treatment, and revisit the procedure after chemo is behind us. We are totally satisfied with this approach. She was not at all worried, there was no urgency in her recommendation. All of the testing on his heart shows zero decrease in function, no muscle atrophy from the chemotherapy, none of the issues a larger PDA would cause. Basically, she said his heart works perfectly. (We could have told her that without all of the fancy equipment.)

On the way home, we stopped by The Center for Building Hope for our weekly vegetables. Benji chose some peppers, lettuce, broccoli, cabbage and carrots, and Michael and I scored some kohlrabi and tomatillos. Today there was an extra treat–gorgeous fresh cut sunflowers. Benji was so happy to take one.

We learned this evening that our oncology team hasn’t received the results of Friday’s bone marrow aspirate yet from the cytology lab in Seattle. We were assured they’d be here tomorrow, so we set up a phone meeting for late afternoon. We can wait. We have plenty to celebrate. Banyan came home with straight A’s today, and for the next three days, Benjamin has no appointments, no medicines, no procedures, no tests. One more day without thinking about chemotherapy dosage is perfectly fine with us. We will enjoy the break, and be thankful for one perfect report card, and one perfectly functioning heart.

9 thoughts on “Day 32

  1. Glad your day went well. Love the picture. Sunflowers are my favorite flower. They look so happy. Way to go Banyan. Enjoy your yummy produce.

  2. Thanks, Laura, for this report, which had me frightened, like a thriller would, as I proceeded.

    After this, you should be able to get a license as an M.D., board-certified in childhood leukemia.

    I’ll ask a question I asked before. You showed us a picture and wrote text some time ago about Benji’s getting his hair cut off but since then you have been showing us beautiful pictures of Benji with gorgeous hair. Can you explain to me?

    Love, Sonia

  3. Hi Laura,
    We’re neighbors of Cathy who has shared so lovingly Benjamin’s story with us. We are with you all in spirit and find Benjamin’s experiences as you write them uplifting even with the long road ahead to recovery. What a beautiful picture you’ve posted.
    Sandy and Duayne

  4. Hi Laura, we are Wadis’s and Sherry’s Aunt and Uncle, We have been praying for Benji, and continue to do so, he is so strong, couragous, fun, and brave . Love and hugs for him and you all. Take care

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