Tuesday, August 13, 2013
1 Year Scan Results
First of all, I will not do to you all what was done to me today. I am not going to dilly dally. Kayla's scan results were ALL CLEAR!!!!! Now, let me begin by saying, this was the most nervous I have been since UCSF.
We woke up early and quickly made it over to E clinic. 9:15 came and went. I sat in the cheery waiting room at E clinic just waiting for Kayla's name to be called. It was not like them to be this late with us this early in the morning. The clinic was empty. While we were sitting, Ashley from Child Life all of a sudden appeared. She came and sat next to Kayla. I didn't really think anything about it at first because she had a release form for me to sign for some art work Kayla did that they wanted to display. Sure! No problem! But when she continued to sit next to Kayla and ask silly questions I started to get concerned. She seemed to be trying a little too hard to keep conversation and didn't seem to have any plans on leaving her side. I had heard many stories from other families at St Jude that were about to receive bad news that someone from Child life comes and stays with the kids so they don't have to be in the room during the conversation. Immediately that thought came to my mind and I began to sweat. My heart was pounding so hard and all I could hear was Kayla saying, "Mom.. you aren't answering any of the questions. Mom! Are you listening?" I looked at Ashley and asked her with a lump in my throat, " Do you know the results of her MRI? Is that why you are sitting with Kayla?" She quickly answered, "Oh no! Not at all. I don't know the results". Still, I wasn't really able to believe her since she didn't seem to be moving any time soon. I just kept thinking, maybe she doesn't know the results but got a call to come and sit with us.
Kayla's name was finally called. I couldn't get in that room quick enough. We went back to room 6 and sat down. A new nurse came in and introduced herself and left. I was expecting Kayla's nurse Lizzy or Dr. Gajjar to walk in, but instead walked in two doctors in white lab coats with badges that read "ONCOLOGY" in big bold print. The lump in my throat returned again this time bigger. What in the world was going on here? What bad news were they about to share??? I was so scared. They asked about 4 pointless questions before I interrupted demanding that they tell me why they were there and did they know the results of Kayla's MRI. The lady said, "Oh yes! Everything looks great! I will get you a copy of the report if you want". And just like that, I felt like I was going to have a heart attack.
I just kept trying to catch my breath. It was so unfair that I had to go through that added stress on top of already being worried enough. When Lizzy and Gajjar finally walked in, I made sure they heard my story loud and clear. That is just NOT ok to do to someone. They reassured me that all doctors there deliver news in different ways. That it totally depends. And that each day it's different. So no matter how much I try and search for a clue, I won't get one. I guess that makes me feel better. Still, those long hours after an MRI and when you finally learn the results are the most excruciating stressful hours EVER.
Yes, Kayla looks fantastic. Yes, she isn't showing any symptoms. Yes, over and over I have watched as friends have gone in with their kids looking and acting perfectly healthy and thriving to be told that their new normal was about to get rocked yet again. Over and over I have heard the stories. You are never safe. It's never over. No one can ever tell. The reason for the scans every 3 months is to find things early if they are back- hopefully before any symptoms have occurred. So, you can imagine how you just really don't know. It's always scary.
Today I met a mom and her 16 year old son, Anthony - yep- Anthony. He was there for the results of his yearly scan. 7 years out!!! He also had Medullo and was diagnosed when he was only 9 years old. It was refreshing and also sad to hear her say that even this far out, she gets SO scared each and every year. They walked out of there able to breathe again today too! I was so happy to hear this news. His cancer had metastasized to his spine. So the fact that he has remained cancer-free this long is so inspiring to so many of us!
We are back home safe and sound. Kayla had the awesome surprise of her room being painted while she was gone! She is so excited to have her "tropical room". I am about to crash. It's been a very long and exhausting day as you can now imagine. Thank you all so much for the prayers, thoughts and kind messages. Kayla has the most amazing loving team behind her... we are so grateful!!!!
Next up. 4th Grade!!! YIKES!!! :)