It’s been a bit over a year since treatment ended. You’d think that would be enough time for life to feel back to normal. In some ways it does. Yet, even with “no evidence of disease” dealing with childhood cancer isn’t totally behind us.
While we’re glad that hitting the year mark means we can do scans 4 months apart instead of 3, we’re still looking at 4 more years of doing scans. As we’ve spent more time in the pediatric cancer community we’ve made more connections, and through that encountered more people who are dealing with relapse of cancer and with passing from cancer. So, while our outlook is good, we know others who are in a very different place.
Scan day this time took longer due to some scheduling challenges. But, the IV insertion was the smoothest yet. YAY!
We met with the oncologist for the check-up and review of scans. It was great to see the doctor that has been with us throughout the process. It was good to hear her say the scans show no evidence of cancer. But, the things they’ve been watching on the liver haven’t resolved, so she has talked with another doctor, a hepatologist and referred Joanna to him. Yay for clear scans, boo for chemo damage and more specialists.
Two days after that appointment in the middle of enjoying a bowl of chili outside with friends, our girl stopped eating. When I asked what was happening, she said “it tastes like chemo again”. See, in the midst of chemo one of the sad things was that tomatoes started tasting bad. One of her favorite foods became impossible to enjoy. Something about the taste of this bowl of chili took her (and us) right back there. Talk about being blindsided. We’re trying to celebrate the NED status and not worry about the liver, and suddenly we’re back in the middle of treatment and all that went with it. Not fun!
It’s open enrollment time for insurance at work. I’m so, so thankful for Morgan’s job and the insurance provided through it. That made the life-saviing treatment possible. In addition to wondering how much our premiums are increasing, I was concerned about changes to deductibles and maximum out of pocket expenses. Before cancer I looked at those numbers, but they didn’t mean a whole lot because I didn’t typically hit them in a year. Now, for these years of scanning, I’m pretty confident we’ll hit both of those. So, when they change, we need to prepare for that.
Watching TV this morning it seemed like every other commercial break included a commercial for St. Jude. Joanna commented about them being on so much. We have lots of thoughts about that, and have considered sharing them several times, but haven’t yet. A short version is that they are great at advertising, and from watching their commercials you’d think that any kid with cancer can go there for treatment for free. That is not the case. Last year during the holiday season this all hit our girl pretty hard. It’s looking like it’ll be the same again this year. One question she asked today after the commercials was “where are the ones for the Jimmy Everest Center?”
So, yes, we are so very grateful that these one year post-treatment scans show no evidence of disease. The harsh treatment she underwent last year did it’s job. Yet, the excitement we want to feel about that is tempered by knowing that we’ll be anxiously waiting for scan results again in March, and then again in July, and then again in November, and so on. Yes, we walk in thankfulness, confidence, and faith, yet that walk is interrupted by foods that don’t taste right, by smells, by commercials and so many other things.
We continue to be thankful for and encouraged by friends that have prayed for us, brought us meals, sent us notes, and expressed love in lots of little ways. It really has been helpful to be reminded that others remember us through this isolating experience.