When you’re in the middle of something really challenging and scary, it feels like it will never end. And then when you’re at the end, it sometimes feels like the whole thing was a blip. That’s how Jenna’s chemotherapy has felt to us. On Friday, after 18 months almost to the day, her chemo came to an end. Just like that, we’re done. WOOHOO!!!!!!!!
And yet, we’re not really done at all. Not that we’re not thrilled that her chemo is finished, please don’t misunderstand, it’s just that so little has really changed. Jenna still has a feeding tube and 6 medications she gets each day, some twice a day. Our daily routine of care is basically the same. Because she’s on so many different medications, we’re not sure what being off chemo and steroids will impact. We’re crossing our fingers that she’ll start eating, and that her diaper rash will go away now. But we don’t know.
Even though her chemotherapy is finished, she will be monitored for many years to come, quarterly for at least 2 years, then less frequently as time passes, to make sure the LCH doesn’t relapse or a different cancer develop as a delayed effect of the chemo. This was news to us. Apparently we tuned this out in previous appointments. So in the wake of her chemo ending, mixed with the excitement and happiness, we are having to come to terms with the real possibility of relapse.
And then there’s a whole new leg of our journey that will begin in the next few weeks, with fears and challenges, possibilities and joy all its own… Jenna’s liver transplant.
Our son has been good at helping us keep things in perspective by reminding us, “It’s just a stepping stone.”
And also… “At least her hair’s been growing.” So true!… (Unfortunately, we can’t say the same for my husband’s hair. HeeHee) : )
Joking aside, what truly matters more than years of monitoring, fear of relapse, possible side effects, and an upcoming liver transplant, is that Jenna is ALIVE!!!
On that note, let me share photos from Jenna’s Last Day of Chemo which began early at the hospital with an abdominal ultrasound, followed by a skeletal survey (x-rays of all her bones), blood draws at the oncology clinic, a quick visit from her liver doctor, bone marrow biopsy and aspiration, and hours later, a final visit to the oncology clinic where the nurses threw her a little party, gave her gifts and let her ring The Bell!
And the ringing of The Bell!…
And so, using your best Star Trek Next Generation computer system voice, say with me, “Phase One… Complete. Initiating Phase Two.”
Or, if you like, say in your best Borg voice, “Resistance is futile.”