DAY 18 - MRD Results & The Godfather

Apologies to leave you hanging, it was a roller coaster of a weekend. We were automatically admitted to the hospital for 48 hours due to his ANC being zero, combined with his fever. ANC = Absolute Neutrophil Count. Neutrophils are the key componets in the body’s defense against infection. A safe or “normal” ANC would be 500-1500. Tash’s ANC count is zero. Yes, ZERO, ZILCH, NADA. He basically has NO defense against any virus or infection. It amazes me how many things your body naturally fights on a daily basis and those of us with a healthy white blood cell count can fight. But these kiddos, undergoing chemo don’t have the ability to fight things like the common cold, its TERR-I-FYING. His cultures came back negative for an infection (YAY!) so they aren’t really sure what spiked the fever but glad it wasn’t anything too serious. 

We were hopeful for a negative MRD report (negative is .01% or less) but that wasn’t the case this time. Tash’s bone marrow results came back and his MRD is 2.8%. The doctors were also hopeful for a negative result and they definitely wanted it to be under 5%, which we were....but I was still crushed. I just knew it was going to come back negative......Tash received more chemo, including the extra dose of PEG (a chemo drug) on Friday. The Day 15 dose of PEG is the trial part of his treatment. His doctors are researching the likelihood of relapse with his particular form of leukemia. If your MRD results are greater then 1% on Day 15 then you receive the extra dose of PEG in hopes of lowering the chance of relapse in the future. So I am going to try and stay positive and think that that extra dose is just going to help lower his chances of relapse.

PEG & PAP

Dr. Pui, the head of Oncology at St. Jude, was on over the weekend so we had the pleasure of visiting with him while we were inpatient. Around here they refer to him as the “Godfather”....when he walks in to the room people stop talking, and it feels like time stops. The man is smart, like super duper genius smart...and here he was reviewing Tash’s case and eventually telling me it was going to be okay. After the nurse practitioner gave us the results of his bone marrow test, Dr. Pui popped his head in to our room and told me not to worry.....Tash was doing well and he expects his MRD to be below 1% next Friday. (Praise the Lord) It was comforting to hear that (especially from the Godfather himself) and I am glad he has that confidence but I’d be lying if I said I wasn’t worried. 

"The Godfather"

We had a clinic visit yesterday, Tash’s counts were low so he received a platelet transfusion. Its amazing how quickly you learn the patterns/routines. Mom and I knew he would need platelets before they even drew his blood. We had the pleasure of meeting a new nurse in the Medicine Room, Mr. Ron. We’ve seen Mr. Ron in the Medicine Room before, he has HUNDREDS of bracelets that his patients have given him over the years. He currently has about 360, and that does not include the 260 he had stolen from his truck a few years ago. I mean what kind of person steals bracelets....sheesh. Anywho, Mr. Ron has been a nurse at St. Jude for 20 years, he was such a sweet man and took great care of our boy. I’m sure he’ll be our nurse again and we can’t wait to give him a #TEAMTASH bracelet to add to his collection.

Nurse Ron

I was in a bit of a funk through the weekend....between the bone marrow results and missing Sloane’s birthday party, I’m sure I was a bit of a pill. BUT, today is a new day. Its Monday, the beginning of a new week and one day closer to remission. We were also “off” today, no clinic or doctor visits. Having an off day is much like a Saturday or Sunday for us. We have the opportunity to relax, refresh and rejuvenate. All of which are needed in this process. It also happens to be Pap’s birthday, so Happy Birthday Pap, we love you to infinity and beyond!! 

Cheers to a new week, a better week, with positive results ahead of us! 

We are #TASHTUFF!!