Ready or not, John’s scans were here again before we knew it. How can 12 weeks possibly fly by so quickly? Scan week kind of snuck up on me, but when the week prior to scans my face started to tingle…I knew I was stressing out…WAY out!
The tingle in the face? Weird I know. I don’t get it too often only when I am really, really stressed. It all began way back during the school year of 92-93 (My Alief friends may remember this.). The short story is there was a father of one of my first grade students that didn’t like me very much. His son told me his dad said I was a “Lowdown, beer drinking, Norwegian ” or something along those lines. While my friends and I did have a few good laughs over that comment, the dislike for me grew to be rather intense. On the last day of school before Thanksgiving break that year, I was sent home because I believe he had called the school letting them know he was coming up. My principal came and pulled me right out of my class and had me leave immediately. All rather nerve-wracking for a 2nd year teacher. The tingle in the face led to hives, which led to steroids, and that led to me hitting the Stop and Go for a personal pan pizza on the way home to my mauve and light blue decorated apartment …on too many evenings. Not good
Since then whenever I am stressing a lot…tingle face. Thankfully it doesn’t happen too often.
There have been a lot of changes this year for me and everyone at school. I think I thought I was too busy with school to worry about scans this time, but the tingle face was reminding me.
Last Thursday, Jon, John and I headed to Children’s in Minneapolis. First was the hearing test and there was no cheating this time! John’s hearing hasn’t changed since last time. Next, he had the MIGB scan. Our routine for this is that Dad doesn’t come in with us, but I keep him posted with text messages. John picked out Despicable ME 2 to watch and the scan starts. It lasts about 36 minutes. I can see the scan on the screen and I was sending John reports as it moved down John’s body. I was later informed that was too much information. He just wants the 1 “Looks good” text in the future.
When that was over I thought we were moving on to CT, but I was informed that there was new protocol and there would be another 30 minute scan. This was a MIBG Spect scan that would give a 360 view of John’s torso area. I wasn’t to worry. They hadn’t seen anything. This is what they would be doing for scans for now on. Part of me wanted to say, “Hey…I’m fine skipping it. We haven’t done it before…let’s not start.”, but of course I just finished watching the movie with John. He was a trooper as always.
Next on to CT. Up on the table John climbed without reservation. This is a short scan. A few pictures with holding his breath, then they give him the contrast, one more picture and then he is usually done. There was a little drama with the contrast this time. It usually gives John a warm sensation throughout his body that he doesn’t like, but this time he could taste it as well and he briefly thought he was going to puke. As I was comforting him, the lab tech opened the door from the room she was in (the one with the class window I can see into) and said to the other tech that was with us, “I need you to come here and look at this picture.” Immediate panic set in. Through the window I could see the two of them looking at the computer screen. John was still on the table, thankfully distracted by all the new Finding Nemo stickers on the walls and ceiling. The tech people left the windowed room and went out another door. My mind raced….”This is it. They see something…”. Thoughts of the 3 children that had just recently been taken by neuroblastoma filled my head. The lead apron I was wearing was becoming unbearably heavy. The longer we waited the heavier it seemed to be. I could no longer stand completely straight up and soon I found myself leaning on the CT table where John was still laying. I’m talking bent over resting on my elbows leaning. John found this great because he could play the “I Spy with my little eye” game even better with me so close. Finally they came back in and sent us on our way with me convinced we were about to enter hell of cancer once again.
Thankfully my darling son had no idea he was in the company of a complete basket case. I had sent a text to Jon about what had went on and what I thought. (Poor guy! Note to self: Don’t do that again!). I couldn’t even make eye contact with him without being teary eyed. He kept mouthing to me, “It’s fine” as John ate 2 hot dogs and a bag of pretzels. This day was just a normal day at the hospital for him. 2 hours…That’s how long we had to wait for results at John’s scheduled appointment with Dr. Walrus. When given the good news a wave of relief along with exhaustion…hit me.
Of all the scan days since being off treatment this had been the most difficult one for me. I had no reason as far as symptoms to worry about John. He’s doing AWESOME! I think it’s all the sadness that has been happening in the world of neuroblastoma. Those 3 children being taken from their families just days within each other. How sneaky and evil this stupid cancer is. The worry…forever the worry.
A few days ago Michael mentioned to us that he received a pass in one of his classes to go see his counselor. He told me thought it had to do with John and it made him very nervous. She just wanted to talk to him about college plans. Of course this made me very sad for him. The worry. Michael worries about John. He is always the first person we call after John’s scans.
While I was extra stressed this time around, I am also very aware that we are so very blessed to have John here to worry about. John’s story is an awesome story. Story of hope for other families facing stage IV Neuroblastoma. His mom just needs to chill a little….maybe a lot!
The next set of scans for John will be on December 31st. We learned if everything goes as planned,he will be done with DFMO on September 10, 2015…6 days before his 9th birthday. At that time scans would move to every 6 months.
Thanks for listening to my rambling this evening.
Love, Hope, and Blessings,
PS – The tingle in the face is gone. :)