Week 15

Week 15 of Chemotherapy proved that we really don’t know what to expect!

For the first time on a clinic chemo day, our kiddo threw up while still in the treatment room. Usually we’re at least on the way home, if not home, before that happens. (And, yes, for those who are wondering, she had been given anti-nausea medicine -this time through the IV line right into the port in her chest).

It’s so heartbreaking to see things cause new “side effects” or problems for her. This visit that included:

• Discomfort when the catheter was removed from having her blood drawn at the beginning. (the numbing cream we’d applied at home made it so that she didn’t feel the needle go in, but she did feel it come out this time -that was new)
• Pain from the needle poke when her port was accessed. (This had happened before so we asked the nurse for new cream at the hospital, it seems that applying it at home may be too soon these days). For the first several weeks she did not feel the needle. For whatever reason, now she does. My English vocabulary doesn’t include appropriate words to express how it feels to hear her squeal from this “poke”.
• Vomiting from the taste of the heparin being used to flush her port. After all the meds, they flush her with saline and then heparin. Those have started making her gag, and now, throw up. (There’s no way the nurse who was helping her is getting paid enough for her job -she caught the vomit with her hands).

After all this we still had to go down the street for her radiation session. The fact that she can still walk in there with a smile on her face and kind words for everyone she encounters is amazing. Not only is she coming from a yucky situation, she knows that the radiation has been messing with how her mouth and cheek feel. But she does – day after day, she adds a little light to the day for the staff and other patients we encounter there.

Twenty-four weeks of “treatment” may not sound very long. Right now it feels extremely long, as we’re still facing 9 more weeks of chemo, plus 8 more radiation sessions. Realizing that we still have no idea what to expect is hard. Multiple weeks I’ve left the hospital thinking “that was the worst ____ yet.” Just because the same things are happening doesn’t mean that her body is reacting the same way. For a kid that likes to know the plan that adds some extra stress. And, foods that she loves continue to be added to the list of things that just don’t taste good anymore. Each snack or mealtime is a new experience all it’s own. (Today it was that mango juice stung the inside of her mouth on the side being radiated. It tasted good, but any that went on the right side of her mouth hurt.)

So, if you ask how we’re doing and we hesitate or giggle, it’s because this is just a tiny snippet of what’s going on. We truly don’t know how we’re doing. We do know that we are thankful for each other, we are thankful for the staff that has been kind and helpful as we’re navigating this, we are thankful for the hours or days that she’s not throwing up or feeling bad, we’re thankful for the friends who have reached out with encouraging notes or words and practical help, and we’re thankful to be together.