Next Steps – Oncology

Kiran’s symptoms have remained stable over the past few months, so today’s visit was pretty straightforward.

The medical assistants who draw blood for labs in the oncology department are truly incredibly good at their jobs. Kiran has notoriously been a challenging poke, and I have felt, both times, the blood draw has gone smoothly. I am thankful for that. It’s nobody’s favorite thing.

Dr did a quick exam. She asked me to send photos documenting the flushing symptoms because she plans to present Kiran’s case to the adult neuroendocrine tumor team in a few weeks. I guess neuroendocrine tumors are fairly common in adults but rare in children, so she wants to make sure she isn’t missing anything. I appreciate her.

I did ask if she has any other thoughts, aside from this tumor, as to what might be going on. She really doesn’t. His symptoms aren’t really consistent with anything else, but it may just be a part of his genetic syndrome (since we don’t know much about that either – this kid just has to be rare in every area).

So. We wait on lab results and suggestions from the adult team. Depending on all of that, it might be time to plan for more imaging. Watch and wait. Wait and watch. The path we walk on the daily.

Whisper Voice

Kiran and I were reading books and singing songs and snuggling on the couch before his bedtime tonight. He was getting sleepy, and he has actually been pretty snuggly lately which hasn’t historically been the case.

He grabbed a handful of my hair, like he does – the one behavior we are consistently, constantly working on modifying – and I whispered to him “no grab, no pull – can you let go of my hair?” – and he whispered his vocalization back to me!

I continued whispering questions that would occasionally get a quiet voiced (not *quite* a whisper but his version) response, and it was truly the sweetest, cutest interaction in the world.

It was just something I never want to forget, because it filled my heart during a time my heart needs filling.

I love him so big.