It's Friday! I know for most of the world it means it's the weekend, but for us, Friday feels like Monday. Not the, "crap! I have to go to work..." kind of feeling, but the beginning of the week feeling. Friday's are our clinic days. Johnny gets a shot of vincristne every Friday this month. Vincristine is the chemo that, if it touches the skin, it burns. He will also get another spinal tap and bone marrow biopsy. This will be day 8 for treatment. Today's tests will determine how much cancer (blasts) are still in his blood and bone.
Sophie is running a fever, so Mike stays home with the kids. It's just me and Johnny. We leave the house about 6:30AM for our 7:30 appointment. I give him his medication on the way. He can't eat or drink anything before his procedure, so he takes his meds on an empty stomach. Bad move. We are almost there when he starts to throw up. Poor thing. Luckily I have a zip lock bag in the car. I will, from this point on, always have one on hand! I tell the nurse and doctor, but they don't seem to be to bothered by it. It's "normal". Okaaay, I change my definition of what normal is...
We are both STARVING. I said if he can't eat, then I won't eat (or at least not in front of him). Neither one of us have eaten since dinner last night. Johnny and I both fantasize about what we are going to eat when he comes out from the procedure. He wants a Mighty Kids meal and a coke. Finally at about 1:30 PM they are ready for Johnny. Woo-Hoo! I go back with him. There are a bunch of people in the procedure room. It's not "surgery" really. Although we are in the surgical area (like my medical terminology?) He is just heavily sedated, and the PA does the work. There are about 3-4 nurses, and the anesthesiologist, all crammed around Johnny. It's the end of the day for them, so they are all loose and talking up a storm. I'm my usual stand-offish self. All I can think about is Johnny, not small talk. I stay until he closes his eyes. I always hate that part. He fights it this time. Last time, by the time we counted to three, he was OUT! This time I can count all the way to 10. He closes his eyes. I watch the monitor to check his heart rate and pulse. His heart was racing at 78 beats per minute, now it slows to about 50. I have tears in my eyes as the nurses tell me to leave. I wish Mike were here! I hate being alone. Now, I'm not hungry. I don't leave to get a bite to eat, instead I eat a muffin from my purse that I picked up from our last hospital stay. yummmm...
After about 30 minutes they call me back to recovery. He is laying on his side, fast asleep. He must stay flat for at least an hour or he will get the "bends" because of the spinal tap. I let him sleep for about two hours. I stroke his hair, hold his hand, and just try to remember him. Every part of him. I cry. I hate being alone. My mind drifts to negative thoughts of the possibility of losing him. I tell myself to stop, but I can't. He is my baby and he is deathly sick. This is every mothers nightmare come true. I find myself just staring at him so I will never forget him. I don't want to forget his cute little nose or his long eyelashes. I don't want them taken away from me. So I stare. I hope my memories will last forever. I tell the nurse to have the doctor call me tonight with the results. And to bring me a coke. Last week when he opened his eyes, the first thing he said was "coke". I want him to have it as soon as he opens his eyes.
He wakes up and is happy that I have his drink waiting for him. He says his hip hurts, well actually he has a hard time sitting up, and I ask him what's wrong. THEN he says his hip hurts. The nurse gives him some Tylenol, he drinks his coke and we are out of there by 5:30! We are home by 6:30, have dinner and hang out. Oh yeah, I actually pass out from exhaustion and sleep until 8:30. Then we hang out and watch our bootleg copy of "Revenge of the Sith". Joey and Sophie go to bed. I take Johnny up. Mike is down playing video games. I "spoon" the little guy, and pray that he will be okay. He falls asleep in my arms, and then I cry. And cry. I'm just so scared. The worst thing anyone tell me that it will be alright. Because know one knows for sure. Not even the doctors. I try not to wake Johnny, but I guess I'm crying so hard I do. He sees me cry and I tell him I'm scared. He doesn't say anything. I wipe away my tears and go down stairs. I go to Mike and just cry. I'm scared. What will happen? He is so little. I don't want to lose him.
Jonathan wants to color, so I bring up the supplies. He and Mike draw and color for an hour or so. Johnny is so creative. He doesn't like using coloring books. His best work is on blank paper. He just doodles, and sketches whatever comes to mind. He is so free, no boundaries or rules. I encourage him to create something everyday. We paint, color, or cut daily. He wants to do play-doh, but the doctors said he can't. Anything that is sticky has the tendency to harbor germs. His white blood cell count is 30. It should be in the range of about 1,000-1,500 to be able to fight off infection. So no movies, stores, restaurants or play-doh. Johnny sleeps between us, and I quietly cry myself to sleep.
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