The sun is up, and the doctors are on their way down to talk to us. Yesterday we were excited about the last day of school. Today we are meeting Johnny's Oncologists. Today will be filled with IV's, transfusions, spinal taps and bone marrow biopsies. Oddly enough, I'm not tired, even though I have been awake for over 24 hours now.
We meet our new oncologists, Dr. Heidi Russell and Dr. Jodi Muscal. They are young, smart, and articulate. Great! I didn't want some old geezer treating my son. They sit and discuss our options. We have three. 1. Get treatment, 2. Participate in a Study, or 3. Do nothing. Of course if we do nothing, Johnny will die in a matter of weeks. So what's the difference between treatment and treatment in a "study"? Pretty much nothing, except there is a huge team of Oncologists that are looking at everything from the does of chemo he gets down to how many times a day he takes a crap. We opt for the study.
But before we can do anything, we have to find out what TYPE of Leukemia Johnny has. There are tons! But they think they have it narrowed down to 4. So to find out, they have to do spinal taps and bone marrow biopsies. But before they do THAT, he needs blood. STAT. (Yes, they say that in real life). His counts are down. His hemoglobin in 4.7 and it needs to be at least 9. Normal kids are between 11-14. This is why he is so pale and so weak. It can take 5-6 hours to get it up to 9, so we need blood STAT. We have to find out what's going on so we can start treatment -- STAT. It's Friday morning, AND it's a holiday weekend! Doctors want to be home with their healthy families. We need to do this fast.
Four bags of whole blood and a bag of platelets later, it's almost 2 PM. We still have some time left. Four o'clock rolls around and we are escorted by Dr. Russell and Dr. Muscal down to PACU for his procedures. WOW! Such red carpet treatment! We are told what will happen, that we can go in with him until he falls asleep and the procedures will take about one hour. From these tests, we will know what we are up against. In the PACU waiting room, Uncle George, his daughter Allison, Mike's mom and Liz show up. We talk about what Johnny wants to eat after the procedure. MC DONALDS, PIZZA, CHICK FIL-A, all of it. He hasn't eaten since dinner last night. Johnny says he is "ready to eat his wheelchair!". They roll the three of us in. They put this thick milky substance in his IV to sedate him. He won't remember a thing. WHEW! In less than 3 seconds, Johnny is out like a light. Tears fill my eyes and I get a big lump in my throat. Mike puts his arm around me and we walk out.
We meet everyone and discuss what to get for dinner. Uncle George asks me "what do you want?". All I can think of is Tuesday. I say "Tuesday.", and no one knows what I mean except for Mike. Because on Tuesday everything was "normal". All I could think about the rest of the day is when I was a kid and really wanted something. What I did back then was say to myself the particular thing or word over and over again, and I thought it would magically materialize. That was what I did from that moment on, until Saturday morning. "I want Tuesday back", "I want Tuesday back", "I want Tuesday back". I wasn't mad, or I never thought "why me?". I just wanted to be "stupid" -- ignorance is bliss.
Johnny comes out of the procedure and turns to Mike and I in recovery and says in a very weak but clear voice "coke". We get him his coke and then we go to his room. There, he devours EVERYTHING he ordered. And almost his fingers too. His room is full of visitors, anxiously waiting to hear from the doctors. Even Joey and Sophie are there. The kids still don't know what's going on. Until Mike and I know for sure, all they know is that something is wrong with Johnny's blood. It's almost 7:30 PM. The Doctor's have the results. We find a conference room that is large enough to hold everyone in Johnny's room, but it's just me and Mike and my mom. The Dr's detail what is going on.
Johnny has Pre B ALL. Precursor B Acute Lymphocytic Leukemia. Very treatable, but still very scary. We sign up for the study. Johnny gets his first treatment of actual chemo (Vincristine) on Saturday. Things are looking good.