The alarm went off at 5:30, although I don’t know why I even set it; I was up hours earlier staring at the dark ceiling with Finn snuggled against me. Today is the day, the beginning of round two of Finns fight against Ewing sarcoma, a rare soft tissue or bone cancer.
Our relapse technically started August 28 when we went in for routine 3-month scans. Routine is what they call it however there is nothing routine in the cancer world. We were 1 year and 10 days from his original surgery and only 3 months from his last chemo and bell ringing. The odds were stacked in our favor at the end of treatment. Our surgeon was amazing, Finn responded well to the chemotherapy regimen and radiation sealed the deal. Less than a 10% chance of relapse, said one specialist. Yet here we are.
Back to 5:30. I get into the shower thinking it will somehow make me feel refreshed and make the dark circles of worry under my eyes disappear. While I continue to get ready and make Declan’s lunch, Finn wakes and moves down to lay next to Declan on the air mattress. Yep, we camp out as a family the night before big days and the boys have shared a bed since they were toddlers. We wake Declan, say goodbye and hugs and then fart noises ensue because, well, brothers.
We hop in the car while it’s still dark and head to the hospital. On the way there we get a call he can go early due to a cancellation, which is great news to get this day over faster.
We arrive, get registered, and have some light chit-chat with Miss J at registration. It’s more nervous chatter between us as we both know why we are there. You see, every encounter we have had at our hospital has led to a relationship more than just a stranger doing their job. Relapse has been the worst family reunion we have ever attended.
As we rush upstairs, the normal practice occurs; height, weight, oxygen level, blood pressure. Finn sits through it all with a frown on his face, and who could blame him. He gets an oral medication to help him relax and “not remember” as they have to lead him back to the operating room without us. The anesthesiologist comes in and really all I heard was, “blah blah any allergies blah blah and heart issues blah blah last time he ate or drank.” It’s standard. Surgeon comes in, the same surgeon that removed his port just three months earlier, and there is the look: a mixture of nice to see you again, but I know why you are here. It makes me feel better that we have seen a mixture of emotions from our team. We live it every day, but I can’t imagine how they are able to process seeing this day in and day out.
It’s time. Time to wheel Finn back. He gets upset, we hold his hand and while we walk next to him, he screams for us to stay with him. Nothing is as heartbreaking as your child screaming for you and you can’t console them. A little piece of my heart was lost with his tears.
The procedure was quick and the doctor came out to review. The port was placed in the left side in order to use a fresh vein. We would be called back shortly to recovery and as soon as the doors opened, I heard him screaming, “Mom!” He was super angry; you see, we’ve sadly come to learn that when you fall asleep with anesthesia angry you wake up angry. He usually wakes up a little grumpy, but this time, he was screaming. Screaming at us, screaming at the nurses, screaming at life. “I hate this! I hate the doctors! I hate the hospital!” (“We do too, love, we do too,” my husband and I commiserated).
Finn tired himself out screaming for 30 minutes, and we traveled down to the doctor’s office for the next step. We were educated on the chemo, side effects and what to expect, and headed over to the infusion center. Finn had a 15-minute infusion of chemo, and we were sent home with instructions on how to give oral meds.
And with that our relapse journey began.