We’re almost to 9 months post-treatment for our girl. YAY!
But, it’s has become a hard season for me… and, with things I had no idea to expect.
A week ago just eating a strawberry became a problem for our girl -it tasted like vincristine. That’s the chemo she had every week. The next morning it was our eggs for breakfast that tasted like it. These are things we’ve eaten LOTS of times the last months. And, suddenly, not only did they taste bad to our girl, but they tasted like medicine that she got through an IV into her chest. Talk about crazy, things you’d never know to expect.
Then, yesterday another fun activity was a strong reminder of it all -the dry erase markers we were using to play “Telestrations” smelled like the chloraprep that was used to clean her port site before access. Yuck! Sitting at a table, having fun with people we love and she’s dragged right back to the table in the hospital where she got the poison that was killing her cancer and making her sick. And, she smelled it through her mask!
Today the same thing happened as we were working on math -the dry erase marker smell did her in. So, we’re back in the living room enjoying a little “Bluey” before we get back to school without the marker. These are the same markers we’ve been using for years, previously with no problem. What a reminder that we really have no idea what to expect, and dealing with childhood cancer highlights that lack of control.
Besides all that, I have my own batches of PTSD hitting. Just over 2 weeks ago a sweet girl we had met through hospital connections went home on hospice care. Morgan’s immediate reaction was “I can make them some fudge and you can make cookies” -we know that chocolate fudge and chocolate chip cookies don’t solve anything. But, they are an expression of care and concern that we can do. So, we planned to do it. We didn’t have the ingredients so it took a bit to get it together, we picked a day to make and deliver it, that day was this past Saturday. As we were in the midst of preparations (including Joanna making a fun stack of Harry Potter jokes for her and her family) we discovered she had passed away the day before. So…do we still take them these treats and jokes?
Flashback to 1986 when my mom’s suicide left our family with the question about what do do with Christmas presents she’d already purchased. Not the same at all, but similar in so many ways. And, thinking about her and the effects of suicide had already been on my mind because we figured out that the Saturday we plan to be in Indiana this fall is the day of the American Foundation for Suicide Prevention Walk that my extended family participates in to honor my teen cousin who passed in 2011.
Yes, I’ve worked hard over the years to deal with her death. It hasn’t been easy, but I’ve healed a lot. But, that doesn’t mean that the pain is completely gone never to return.
This has been a hard several months for our local pediatric cancer community (yep, a community most of don’t realize exists, and none of us want to be in). Though kids pass away from cancer all the time, knowing 3 of them, and knowing people who know a 4th that all have passed in the last few months is a lot to process when your own kiddo has experienced it too.
Some time periods just feel a bit like are a bit of trauma on top of trauma. And, this is one of those periods. Sometimes just acknowledging it helps. So, that’s what I’m doing.