“Imagine going before a judge every three months who could arbitrarily decide your fate. That’s kind of like scan week for cancer parents – our families live life in three month increments and our future is held hostage by scanning machines at our local Children’s Hospitals…” I copied and pasted this from Patrick Lacey’s FB page. He too is facing scans for his son this week. As I read his thoughts, I thought how true his statement is.
The Gegen’s and our extended family do live our lives in three months increments. Just give us great scan results today and we’ll be able to live the next 3 months without as much worry, although some level of worry is always, always there. Receiving the great scan results give us the strength to pick ourselves up off the emotional floor of scan week and face the next 3 months with as much optimism we allow ourselves to have.
John’s MIBG scan came back “Normal examination without evidence of neuroblastoma”. Beyond thrilled about that! I just about passed out during his MIBG because after he went through the 45 minute scan, they came back and said they wanted to do his pelvis area again. This news sent my mind racing. How many times had he had a MIBG scan and only once did they redo a spot, his pelvis? Just that first time when he was full of cancer. What a relief to hear all his bones were clear!
The CT scan threw me today too. They did his chest and tummy like always and I thought he was done. Nope… they were going to do his head. They’ve never done that before and I said as much. The test had been ordered so it was done. We did learn his brain and skull are great. 🙂
The doctor that read John’s scans noted that there was a spot on his lungs that hadn’t been there before and to watch this area. Dr. Chu told us right away that this “area” was not a concern to her. In fact, she wrote “not worried” in pen right on the report. She also commented on the fact that some of John’s counts were off most likely due to his cold and that is probably what is causing the change in his lungs as well. We were told that sometimes they don’t image a patient for those exact reasons. When John left the room to go to the restroom I was told to “%100 not worry”.
Of course I got home and over analyzed the documents, reading and rereading… I finally called our nurse back and talked with her. I feel some better…she is always so patient with me.
The news today was good, but I would have liked for it to have been better, but this is my life…John’s life…our family’s life. This is the life of a parent of a child that has/had cancer. I know scan week will never ever get easy! I pray I have the rest of my life to worry about John!
To be honest, I am totally exhausted today. Jon and I both know that everything can be turned upside down with one doctor’s appointment. I asked him today how much he thinks we’ve aged through this process. My husband does his best to remain the strong one, but I could tell today that he too was consumed with anxiety and worry. He is already well versed in Dr. Chu once again, ” Shell, Dr. Chu is not worried, so we shouldn’t be.” Yes, that will be the phrase to carry us through the next 12 weeks…until the next set of scans.
You know who’s not worried? John! He sailed through it all like the champ he is. Not a peep during the IV, was still as a statue for his 55 minutes of MIBG scan, and he skipped his way through Cassetta’s. Our youngest is an expert at taking life one day at a time.
The Youtube video below is for my champion…John, for Alannah whom was at the clinic today when we were (It was nice to finally meet you Angie!), Abby that was upstairs on the 7th floor we know so well, Lilah,Mathew, Braden,Sienna Joy, Christopher…all the children and families that continue to “brush off the dust” and keep getting up. Champions…each and everyone.
Love, Hope & Blessings,