Wow! Here we are. It’s already been 12 weeks since John’s last scans ( It is absolutely crazy how quickly 12 weeks fly by!) and the somewhat of a finish line is in sight. For the past 1, 281 days of John’s life, of our lives as parents, we have endured the brutal roller coaster of scans EVERY 12 weeks. No matter how much I tell myself to “buck up”, get a grip, to breathe or remind myself how much we have to be thankful for …it never gets any easier. Never and I believe this is true for all families that have been through the hell of cancer. Why? Because we know that our lives can be turned upside down in an instant. Because we’ve lived that nightmare and we silently beg and plead for cancer to stay away.
They cycle of scans and the events that accompany the 12 weeks seem to remain pretty consistent in our home. We leave the most recent set of scans with great results on a high. Yay! We can breathe a little easier. We go about our lives as normal as they have ever been. Weeks fly by and now it is closer to scan week (UGH!). Without fail, John will complain that his leg hurts and while I am cool as a cucumber on the outside, (“Remember….you skated a lot tonight or jumped on the trampoline or I saw you sitting on your knees while playing Xbox…”) In my mind it’s pure panic, (“Is it cancer? it’s not cancer. He looks great. Sure he looks great, but he had leg pain at diagnosis. Just calm down. Don’t make a big deal about it to John and then he’ll stop saying his leg hurts. What are we going to do if…”, over and over.
This time we had some added excitement with the teeniest of bruises to his eyelid. (Other Neuroblastoma parents know where this line of thought is going.) Bruises around the eye are a sign of relapse in the brain. I had that kid closing his eye so often so I could examine that speck, I’m surprised it’s not permanently locked at a half blink. When I finally couldn’t stand the voice in my head saying, “Is it? Has he relapsed? Are we going to be going to New York for treatment?”, I told my husband my fears. I believe his response was, “What the hell are you talking about?” Ahh….the voice of reason, not that I didn’t have him all jacked up too and he was now also participating in the several times a day eyelid inspection of our irritated 9 year old son. The speck….all gone. it was a bruise and I probably took yet another year off of my husband’s life expectancy with my irrational thoughts.
And…last week John woke with a stomach ache and had diarrhea. The flu right? Not in my mind…,”He had stomach problems when he was diagnosed, weeks leading up to his diagnosis, didn’t he throw up in Dad’s car at the church in Green Leafton?…” (And yes… it is all one rambling thought.) Then a few days later Jeffrey gets the flu and (I’m so sorry I am admitting this Jeffrey and I love you tons.) and the ticker tape of pathetic thoughts is in full force, “Good Jeffrey has the flu, so that means John did have the flu, which means he hasn’t relapsed, he just has the flu, we’re all good here.” Seriously? Yes, cancer has driven me to a place where I find relief and comfort in one son’s illness as it gives me peace of mind for my other son. How backwards is that?!
My mind….it is EXHAUSTING! Every normal childhood complaint, in my mind, is a road back to the hell of childhood cancer. These thoughts can make the most rational person crazy and at times….batshit crazy. Now that is some real crazy.
Guess what week this is? Bingo! Scan week…and a big one at that. Tomorrow (Thursday) John will have a CT scan, an injection for Friday’s MIBG scan and a hearing test. Friday is MIBG scan and an END OF DFMO TREATMENT exam with Dr. Raawas!! If all goes well (Rational Shelly feels it will) scans will officially move to every 6 months (that’s the some what of a finish lie part. Done with DFMO, but never really done as he will continue to receive scans and be under the watchful eye of Children’s).
So tonight I can’t sleep, my head is pounding and I’m not looking forward to the donut scan (CT scan…John says it looks like a donut). I know from past experience that even though I will have given him Ativan for anxiety and Zofran for nausea,as soon as they start pushing the contrast in he is going to become very upset, extremely anxious, his stomach will hurt and he will throw up. He knows this is going to happen and yet walks in willingly every time. I wish my mind had the courage and composure of John Joseph.
Even with all the crazy mind games I play with myself, I know now clearer than ever, how grateful we are to have had the opportunity to have John on the DFMO trial…to give our child a fighting chance to live the life he deserves….to give us hope for the future. Jon and I are are so thankful to all the nonprofits groups like Beat NB and Because of Ezra, that have helped to fun research by the NMTRC (DFMO trial). Research that is dedicated to finding a cure for childhood cancer.
For the first time since April 6, 2012 John will be off of treatment. No daily medicines. No monthly doctor appointments with labs and urine tests. Just living the life of a 9 year old boy. The thought of it is both exciting and terrifying. Crazy stuff…
Love, Hope, and Blessings,