Exactly a year ago, we were in the hospital with Ellie, getting an MIBG. This was pre-heart diagnosis. After her tumor diagnosis, we had to do some testing to see if her tumor had spread to other places. We had a MRI previously during the week and had surgery scheduled for that following Friday to remove the tumor. We went to the hospital the day before to do labs and inject the radioactive die into her through an I.V. For anyone reading this that has to go through this, ask a bunch of questions, tell them to talk you through the process while the MIBG is going on, because it was a roller coaster of a day. During the MRI, the tumor appeared to be smaller than the previous one done in St. George. This test was to show if any of the cancer cells were any where else in her body. They also told us that if it had spread to her bones or her spine, than it was a very bad prognosis. We were already nervous for this test anyway, but after they put her to sleep, they allowed us to sit in the room and watch. The one thing that they did tell us is that the cancer cells glow and show up on the screen. So as we were watching the screen, all her bones start to glow and her liver is glowing brighter than ever. This test took about an hour and a half, and half way into it, I become physically ill to the point where I had to leave. I was at the end of my rope. I thought that that was it and we were going to loose our little girl to cancer two days after I was given hope. Nate and his mom stayed in the room but later my mom-in-law told me she was thinking the same thing and thinking that the cancer was everywhere. At the end, they showed us where the tumor was in her neck, which was lit up, and that her liver was filtering the die and that is why it was showing up in her stomach. Her bones also attracted the die but it had to be solid to show cancer cells. So after we met with the doctor's we felt more relief when they told us that the tumor appeared to be contained in her one spot in her neck and that it indeed had not spread. PHEW! Maybe, this should be one of those tests that they should have you wait outside until they get the results back. They took Ellie's case to a national conference board the next day and they decided to cancel the surgery. They felt like her tumor had regressed enough and thought that it would be better to watch it and see if it regresses away completely. Because of where it is located, they decided that this was the better option and retrieve the tumor if it began to spread. I liked that they had a conference with about ten doctors nationwide to come up with her path of treatment. It made us feel at ease with their decision to cancel the surgery. Anyway, it was a roller coaster of a day but somehow we survived it and many more days like this. Retelling this day has brought back a flood of emotions but we ended on good note. Nate felt like this was all he needed for a birthday present. Cancer contained, surgery cancelled, a good day after all.
Where to even start
7 months ago
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