Day 3

Yesterday was a lesson in expectations. We learned they can be promptly chucked out the window when leukemia is involved.

After a stellar morning, Benjamin started feeing pretty uncomfortable around 2pm. We encouraged quiet time, and he napped from about 2:30 to 4. When he woke up, his pain around his new Medi-port got worse and worse, and his lower back was sore from the bone marrow aspiration and spinal fluid draw. Still, he did not want pain medicine. He has already learned that most of the meds that make him feel better also make him sleepy, and this guy doesn’t want to miss a beat.

Yesterday was also a lesson in voicing our parental instincts. Loudly. Benji got super hot as the afternoon went on, but no one said he had a fever, and all temps recorded normal. He finally asked for pain medicine–a big sign to us–and then fell asleep again. When he woke up, he vomited, though probably not from the pain meds but just from the cancer or the chemo medicine from Day 1. He had only tried a few bites of various things and all of that was gone. So he hasn’t really eaten anything since about 11:15pm on New Year’s Day. He’s lost six pounds. His taste buds and sense of smell have completely changed.

Finally, a new tech was on shift and voila, a fever registered. We KNEW it. So in came many people, and he had blood drawn from port as well as from a peripheral vein to rule out infection at the site. He was so brave. He was not expecting that second needle (gosh, it makes such a difference when people just tell you what they’re doing to you before they do it–even if you’re only seven).

The cultures take days to get back, so they started him on antibiotics and Tylenol anyway. Fever was normal within an hour. But he kept complaining of itching at the port site, and we noticed way more blood in the bandage and trickling down underneath. The nurses called Dr. Moore and he requested a surgical tech look at it.

The tech removed the dressing way too roughly and then left, and the nurses didn’t come back to redress the wound for like 5 minutes (or maybe it was 2, but it felt like 20). So Benji was sitting there with this wound, and he was so scared. Not crying though. Friends, I have never in my life seen a moment of more pure, not-for-anyone’s-benefit, honest to goodness bravery. He has taught us so much in these few days already.

The nurses finally came in and carefully redressed his port site, and within a few minutes, he was sleeping soundly.

In addition to infection worry, Benjamin’s wound told us something else. The bleeding was a flag for low platelets. His morning blood count today verified our worry, but also came with some good news. His platelet count was only 9,000, but his white blood cell count was 2.84. Take the good, take the bad. So we woke up to another platelet transfusion and they’ll check those levels again at noon.

I know I’m getting personal here but I process through writing and currently this space is giving me that relief. So here goes. My gratitude for my family overwhelms me. My husband is amazing, and has abilities I simply do not possess. This morning, during Dr. Moore’s rounds, we were going over all of these recent developments and I started to tell him about our frustration with the surgical tech, and leaving Benji and us alone with his open wound. Michael stopped me so kindly and subtly, and suggested we step outside after the doc was finished talking with Benji. We did, and Michael communicated our concerns so diplomatically, yet so assertively–I found myself flashing back almost eleven years ago, to our stay in the NICU with Banyan. Without his composed and clear voice, I don’t know what I would do. I am sure there are many single parents who go through this. I don’t know how.

Just as we have gained a new level of respect for Benjamin the Brave, we are giving a new kind of thanks for Banyan the Strong. Our eldest has carried quite a lot on his shoulders over the past few days. He feels it so deeply yet rides the wave so easily. As he goes back to school tomorrow and has to answer questions about leukemia and cancer and words a fifth grader shouldn’t have to use, we are with him and thankful for him as a champion of his family’s needs. I look forward to my next uninterrupted chess match with the boy. I’m sure he’ll win.

With our solid partnership comes an absolutely invaluable extended family. I just can’t say enough about it. Michael’s mother (happy birthday!) and sister have kept us fed and brought us every single item we have needed. My sister and her sweet family have been solid advocates, keeping me grounded when I feel shaky. My mother was at my side yesterday and my father is on the way. And again, our dear friends have made sure we don’t have a care in the world on the homefront. I can’t get on this journal or on Facebook or on the AMAZING gofundme site without falling apart. WE FEEL IT.

Here’s to no expectations, and to better days ahead. Here’s to community. Here’s to family.

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