Beginnings

Today was a really big day for our Katertot and she simply wowed me from start to finish.

Usually we struggle with most of what is involved with varying degrees of frustration: we have a hard time getting the cream onto her port to numb it before leaving for the clinic and we struggle to get her to take her zofran.  We struggle with accessing her, she’s scared of chemo and we usually have challenges getting her to ‘settle’ and let the PPSU nurses get all the leads & gizmos onto her before settling in for Oncaspar, a 1 hour infusion & 1 hour observation.

Not today. Kate was a dream this morning – she only gave us half a glance about the cream and was giggling in the car ride to the clinic. She only gave Nurse S a mildly hard time while getting accessed. She played happily, chatted up Dr. D and didn’t so much as make a peep when Nurse H gave her chemo. Off to the PPSU, she was a charmer and settled in chatting up her nurses there, too. Even all through the dye study, she was happy as a clam, only really crying when her hands were restrained (who could blame her??) 3 or 4 months ago, this process would have sent her into a crazy spiral. The wheelchair ride alone would have set her of.  Today? She. Was. Awesome. I was such a proud, proud mommy.

My sister said it best on Facebook today when she said that while we still have a long way to go, the “end” of any chemo is something to celebrate. For 30 weeks Kate has had this chemo every other week. While she doesn’t react to it and it doesn’t cause nausea or anything like that, it is very likely to blame for her lack of appetite and, we suspect, for some of the overall weakness. Saying goodbye to this one is really quite a milestone for us as we head into maintenance.

We talk about “our nurses” a lot here and with Kate and really, we have two “sets.” The nurses at the clinic are tremendous and spending the mornings playing there has truly become something Kate looks forward to (once the icky parts are over.) Those people…they just have my whole heart and I’m getting choked up thinking about how much they mean to us…

Then, we have our PPSU nurses who are there with us for every sedation and Oncaspar infusion, which usually (from start to finish) takes about 4 hours. They have to observe her a lot on this chemo, so they’re in our room with her a lot of the time. We’ve gotten to know them quite well. Today, we wanted to say thank you to them in a special way because we won’t be spending any more time there except every 12 weeks for spinal taps. We got them each a small token of our thanks, coupled with an Easter basket filled with goodies & nurse-themed cake pops.

Nurse B welcomes us each and every time with the warmest heart you could imagine. She also has the prettiest hair I’ve ever seen. She told us early on that Kate would learn to love them and I scoffed. (Guess who was right?) Nurse C is one of the most thorough people ever and I always know we’re in great hands with her. She makes you feel safe. Nurse J is as sweet as they come and never, ever misses stopping by to smile and say hello to Kate. Nurse N was our nurse most of the time and had the most beautiful Russian accent. We loved getting to know her…sometimes she would sit for an hour at a time…explaining things to us, telling us all about her own children…really connecting with us as a family. And Nurse H, who is just…absolutely in the right profession. Her heart, her way with Kate…I will never, ever forget it. Whenever something seemed “off” for us, or whenever I really wanted an answer of truth, Nurses N & H were who I set off to look for. We love them all.

We truly will miss seeing them but are really happy to close this chapter of Kate’s treatment and head into a new phase. A new beginning. With (hopefully) a big appetite.

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