Yall, I have the BIGGEST NEWS EVER! You might want to sit down, or prepare to pick your face up off the floor. Remember when I shared recently that Noahs latest MRD test came back negative for leukemia? And that the house doctor (not the doctor we love so much) and nurse practitioner were surprised because they said usually when theres an engraftment drop such as Noah experienced, that the leukemia comes right back? But it didnt? And they didnt know why? And we were in total shock because we had no idea they were actually expecting it? And how if that had happened they would have had meetings to determine if Noah was a candidate for CART because that would have been his last hope? Well... when we arrived at Noahs appointment on Tuesday, I immediately had a bad feeling. I look for anything thats different. I watch expressions- tones of voices. I listen for vague answers. Then, the nurse practitioner arrived in the waiting room and called us back to an exam room. Thats when I knew there was trouble. Most of his appointments actually take place in the waiting room or in the Day Hospital with dozens of other people sitting around. I dont know if HIPPA laws apply to children, but I can tell you, no one in this area gives a flying fig about HIPPA. You would not believe the conversations I am privy to when Im in a doctors office. I once listened to a nurse talk to an old man, as he stood in the waiting room, about his prostate issues, and how he needed to collect his urine for 24 hours. The good news is, I dont care about HIPPA either. But I digress. Im pretty manic right now so this story could go anywhere. Anyway, the nurse practitioner wasnt answering some of my questions about random things. She said the doctor (the one we LOVE) would be in soon to talk to us. So what I began to assume was that Noahs engraftment had plummeted. We werent waiting on any other test results. Soon we learned that he was holding steady at 91%. Thats not great news, but not bad either. Its medium news. BUT THEN IT HAPPENED. They told us that the hospital had made a terrible error. The MRD (leukemia test) results they had given us last week were incorrect. They said something went wrong, and the blood was never sent to Seattle for the test. It was lost or something. When they gave us the results last week, the number that popped up on the computer was one of his old numbers. We just sat there in stunned silence and our doctor was the one who was really angry. We knew heads were going to roll. He planned a full investigation and Id hate to be the one who screwed it up because he was coming after them. We told him we werent angry, only afraid and shocked. He said we needed to be angry. lol I wanted to die. We decided not to share this information with you all because its not fair to drag you along on the emotional roller coaster- this leukemia experience we refer to as The Swirling Vortex of Terror. We didnt even tell Elizabeth. Another MRD test was ordered right away and wed have to wait to get the real results. It usually takes a week, sometimes more. Our doctor said he was going to do everything in his power to speed up the process. I knew he would, because after seeing him in action that day with the blood bank, he would be on it. That night, the Make-A-Wish people were coming to our house, and I couldnt think of anything I wanted less. We were very shaken up, and we were going to have to spend the evening talking about a dream vacation that I wasnt sure was ever going to happen. However, once they arrived, the evening became kind of fun, and I stopped thinking about the bleak news. The following day, which was yesterday, I spent the entire day sleeping, playing Solitaire, popping Xanax, drinking pumpkin spice lattes, and praying. Everyone here knows, when they see me in that overall state, Im not doing well. It hadnt happened in about 5 months. I was also physically ill. I know what youre thinking, last week I told you how Id turned that fear over to God, when it popped up. Were all still going to have those days. What time I AM afraid, I will trust in Thee. (Psalm 56:3) Fear happens. So heres the BIG news: Today, Steve received an email from the nurse practitioner, with an attachment and a note. They already, just 2 days later, had the new, real MRD results. Hes REALLY negative for leukemia. There are NO detectable leukemia cells! The attachment was the dated report from the lab in Seattle so wed know to believe them this time. Steve even printed it out for me, so I could touch it. So the surprising good news that turned out not to be real, actually did turn out to be real. Praise God. Ive almost stopped shaking.
Posted on: Fri, 31 Oct 2014 03:24:25 +0000
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