This morning our drive to Minneapolis was s-l-o-w! It took us almost 2 1/2 hours to get there! Surprisingly, we were able to get right in to the CT scan….everyone was running late this morning. John had his IV placed and was in the “Donut” (CT scan) before Jon was back from parking the truck! The Ct scan is the easier of his 2 scans because it is only about 10 minutes and I can’t see any of the images.
From the CT scan we were walked directly to the MIBG scan. Here we found one of our favorite technicians. She holds a special place in my heart because she did John’s first initial scan prior to being diagnosed and she was so kind to both of us. (Later today when I was sharing with John how much I like her he said, “Why don’t you marry her then?”). I sent a quick text to Jon to let him know where we were and that we would see him in an hour or so. John jumped up on the table agreed to a warm blanket, got his feet taped together, and got all tucked in. They always start with the head first and they lower the machine as close to his face as possible with out it touching him. He promptly fell asleep and he slept the entire scan! Obviously he had no concerns and was comfortable with the people and process. Behind me his image began to appear on the computer screen. Today I looked and looked and looked again. To my untrained eyes I couldn’t see any bright spots besides his soft tissue areas that are suppose to be bright. Then I started to panic a little bit that I was feeling over confident, I had been casually talking with the technicians….what was I thinking..shut up and quit looking! They had to scan his bladder area twice…they always do and today I didn’t let this bother me. I woke John up when it was done and he had his apple juice and animal crackers snack. Next we were off to the clinic to get labs drawn and his IV removed.
The lobby was busy, busy, busy…everyone that was late for an earlier appointment was there now. We found a few empty seats and did our people watching. Not too long after we were there a mom and dad pulled in a darling little boy in a wagon in to the waiting area. He was about 3 with a shiny bald head.. with a scar up the back of his head and another one on top. My heart ached for that family and it reminded me of John’s little bald head and of all the hurt, physically and emotionally, those shiny heads represent for the child and the entire family. They sat on the couch directly opposite of us. A child life specialist came out and talked with them. I overheard they had just had scans that morning too and they were sharing their agony of scanxiety and the wait. Man…I wanted to go plop myself between them, link one of their arms with mine and wait it out with them. No one gets it like another mom and dad. We talked with John’s nurse, got the IV removed and headed for lunch until his later appointment with Dr. Rawaas.
Before we knew it we were back in the lobby and escorted to a room. This is when I begin my practice of discrete deep breathing to prevent me from wigging out. While I was sitting in the child size chair (No biggy…I spend a lot of my school day in chairs that size) and John and Jon were on the couch reading a book I heard the couple with the little boy from the lobby sharing the good news that his scans were stable. Jon told me I should shut the door. I told him no way…I was listening to every bit of their wonderful news. I really wanted to run out and give all 3 of them a hug…but I thought that would have been a little much.
The nutritionist came in to talk to us as I requested. We didn’t really learn any new ideas for fattening the kid up. He has grown another centimeter since January 2nd! Tall and skinny boy! Next came John’s doctor. You can not read his face for good or bad…he always has the same expression. He is a quiet, gentle man. Now preferably I would like him to come in with a ginormous grin on his face, fists pumping and shouting that John is NED. Then I could breathe. This is not his way or probably the way of most children oncologist for that matter. He sat down and said, “John’s scans are stable.”,. We talked a little, he didn’t mention that previous spot on his lung, but I asked. THe report said it was smaller, but he still is confident that it isn’t disease. I am good with that. 2 counts were elevated slightly… most likely due to John’s cold. I asked questions, he answered..Jon did his best to hang in there. Mikko was oblivious to the seriousness of the conversation.
Towards the end Dr. Rawaas told me he had a new amended consent form for us to sign for the DFMO trial. In looking at it he saw that John now needed to sign as well because he is 7. He explained to John what is was, what he was consenting to and what they hope the DFMO will do (Keep Neuroblastoma away). I started to internally panic a little because we just told John those were vitamins. The gig was up!
On the way home Jeffrey called and I told him John’s scans were good. He said, “They’re always good. Why is Michael’s car in the garage?”. Jeffrey..Not a worry in the world. Love that about that kid! Michael’s car was in the garage because he was home with the stomach flu. He was sleeping when we got home, but as soon as he woke up he came to find me and ask about John’s scans. He wants everything to be ok for John. The big brother in him wants to protect him from cancer. Love that about that kid! In hindsight…I hope the stomach flu really wasn’t worry.
Me? I got home told husband Jon “Goodbye” and beat it down the hall, to my bed and nestled in under my covers for about an hour. I was beat…beat up and drained…as was he, but he had snow to plow!(Thank you for that hour Jon!) I can’t even put into words the mess these 12 weeks scans put me/us into.. there’s nothing we can do about it. Every parent in our position goes through the same mind games and terror. 12 more weeks until the next scans. Living our lives in 12 week increments…fully aware that each day is a gift.
When I tucked John into bed tonight I tried discuss the purpose of the DFMO and scans with him. He wanted nothing to do with that conversation. He said, “Can we just talk about my behavior instead?”. Wow…he really didn’t want to talk about it, so we didn’t and we will when the time is right.
Of course John’s dinner was served on the “CELEBRATE” plate tonight!
I’m not proof reading tonight…sorry for errors!
Love, Hope and Blessings,
Safe travels to Judy and Sam and my parents as they head to sunshine and warmth.