Wow where do I start.... first the important news .... he had his MRI scheduled at 8:30am ... prep at 7:15am - we were told yesterday that our time changed to late noon and it of course was upsetting trying to figure out how to keep him happy without eating all day. The scheduler asked me to stop by to pick up a new schedule. I headed over and saw another family and a child in a wheel chair that clearly was pumped with massive steriods, so swollen it was heartbreaking. I asked the mother if she was there to get a new MRI schedule, she said yes. I asked what time, she said 7:15am. I responded you took my time slot, but thats totally ok. I felt so humbled looking at this little boy in such a poor condition. She said she was so sorry, I know its hard not to eat that long for a baby. I responded, please don't apologize it ok, he can wait. I then asked her sons diagnoses. When she said DIPG my heart sank and I realized then that at Jude when a schedule changes, there is a very good reason for it. I will never again question a schedule change. The severity of his condition was heartbreaking. So a few hours later I got a call from the schedulers that told me that we had our initial time back and that the emergency scan was canceled because the child was too sick to scan. While I as glad to take that spot back, I didnt want it knowing another child was so very ill.

So scan for the first time was on time! Yet never have we ever waited longer for results. He was in recovery by 10:30am and we got him at 11am. Our primary doctor was so busy we could not hunt her down for results. Everyone knows that Wednesdays are a bad day to scan because its tough to get results, docs are in meetings all day. So we met with Dr. Merchant that said he looked at the scan and didn't see anything, but we would have an official report by tonight. He said now everything gets easier since your treatment is done. (I dont understand that, these scans are enough to kill a horse the anxiety) So we left with still no answers. We waited till 3pm still nothing. We went back and when I'm stressed, I sleep. I woke up at 5 and went back to the hospital to pick up pedialyte for tomorrows hearing test. E Clinic was still open and so I asked if they saw Dr. Wright - they said not all day. 2 minutes later the scheduler popped her head out and said Dr. Wright was back there and to wait .... I was numb because Nick my Rock was not there! I called and said get your butt back here! She never came out which would scare anyone, so another nurse practitioner walked out and Nick asked is Dr. Wright back there? She said no. We were told to stay here so she called Dr. Wright and we were told she would call us.

A few minutes later my phone rang and I had Nick answer it since I was maxed out! She said it was a terrible day and that everything was NED (NO EVIDENCE OF DISEASE) That means clear !!!! CSF (Cranial Spinal Fluid) Clear of cancer cells. Long breath .......she also had no clue the schedulers were telling us to wait, she felt bad about it but she didn't know. As we walk into the Grizzle House a tornado watch sent us all into the stair wells! This is becoming a new habit while we visit Memphis. I will report back with the rest of the details later .... but I just wanted to tell you the 8 hour wait really stunk and I know people wait days ... we are just so spoiled at Jude and our Doctor. Thank you all for your prayers .... you have no idea how grateful we are that we FINALLY get to come home no more chemo or meds and just enjoy our family for the first time in a year!!!!! We can't wait to be somewhat normal -though our normal is very different we are embracing and new normal and praying for scans to remain cancer free always. To the ones that read our updates and truly have been with us through this whole journey - THANK YOU SO MUCH you have touched our hearts and we know who you are .... We love you ...

So I want to leave you with this .... below is an image of the tornado that came in this trip ... this bridge is outside of the hospital. To the right you can see a paramid shaped building - our building is just behind that building where we were while I typed this message to you .... CRAZY RIGHT???