Last night, Adam had a sleepover at Grandpa & Grandma's house tonight. He packed up his Spongebob backpack with pj's, blankie, ruffie, play clothes, and my "Diner, Drive-In, and Dives" cookbook. Yes, he is looking forward to cooking with Grandma. He picked out steak tacos for dinner and walnut pancakes for breakfast. He is a boy who knows what he wants. He enjoys spending time with his grandparents and feels extra special that he gets to stay the night. It's not like he doesn't see them every day of his life anyway! But really, can you ever have too much of grandparents? I think not!
Today I got to see the “echo” of my son’s heart. An echo (echocardiogram) is like an ultrasound of the heart. The purpose is to get a baseline of Adam’s ticker so they can monitor for any unwanted side effects during the next round of chemo we go through (in October). The echo shows these things: a measure the size of the heart chambers, pumping function, valve function, circulation, and fluid in the pericardium (the sac that surrounds the heart). Of course, the echo set off a realization I need to write about.
As I was watching the sonogrammer (technically an “echocardiographer” – one of the few healthcare jobs that is growing due to our aging population and prevalence of heart disease), I felt like I was watching Adam grow up. Now, let me preface… He is my flesh and blood. When he is in pain, I am in pain. If there were any trades in life, I would trade his disease for my health. But as I watched his heart pump, I realized that he is functioning on his own. His own independent body and organs, working in harmony, fighting to be well. While we are his advocate, recipient of all medical information and decisions, it is Adam who is doing all the hard work. I have been distracted on my own “hard” work. How hard it is to go to work, clean the house, put food on the table, care for two kids, and then take care of a child with special needs. But, hello! I LOVE my jobs. I love being a mom, wife, friend, etc. I love to teach. I love where we live. I also love to cook. I even get to play softball on Sunday nights. I am doing what I LOVE to do – and OF COURSE daily challenges come up. That’s life. Adam, on the other hand is doing all the fighting. His body is fighting to be well. Adam is fighting to do the things he loves to do, realizing he is different than kids his age, and trying to learn a new normal.
On Thursday I was feeling really defeated. I had a long day at school, Rachel was desperate for attention from Adam (good or bad attention – she doesn’t discriminate), and I picked up my car from the shop just to find out it was in worse condition than when it went in. The final straw was when I found out that I had been giving Adam the wrong dose of medicine for the last 5 days. I wasn’t giving him enough. I don’t know when exactly my brain decided to start giving him 1.75 instead of 2.25 of his pills, but it happened. I am more greatful that my brain threw up the red flags and I had the urge that something was not right. And the rush of “failure” swept in. I thought I was at least composed enough to call the doctor, but the hospital receptionist was pretty harsh when I asked to speak to someone in oncology. She said, “well, they’ve all gone home, do I need to page the doctor?” Well, um, I guess I don’t know. So she transfers me to the advice nurse. Yes, the general, my kid has a runny nose, advice nurse. So, I called back and demanded the doctor. Unfortunately, by the time the doctor came on the line, I was in an uncontrollable fit of tears. I am pretty sure I asked her if she was a therapist as well. She of course said, no, and did not think my “joke” was very funny (she doesn’t know me well enough to know that’s as funny as my jokes get). But as an un-confrontational person who just had to tell a service manager that he is responsible for letting me drive my kids in a car that sounds like it is going to blow up and is therefore responsible for fixing it, and then go through a receptionist with a pitchfork up her (you know what) just to get a doctor on the line, I was spent. Luckily though, the world is not ending, and I haven’t failed completely. Adam will be ok, and I am probably a stronger person from the whole situation… somehow…
Adam also had some more chemo today intravenously. It is really non-invasive with the metaport. He might feel some pressure, but it takes like 30 seconds to do. The waiting is actually the hard part. We have to check in with the doctor, which takes a while, especially because I always have a ton of questions. Today we met our official doctor. Apparently, our pediatrician has worked with her and their sons played baseball together. I am sure Dr. Ross must have arranged for this, right? Because our doctor team kicks butt. Praise the Lord for working that out! She also tells us that this behavior thing and crazy eating thing will be over in about two weeks.
On that note, here is our latest list of new recipes: banana bread, macaroni and cheese, philly-steak inspired hot links, homemade French bread, steak tacos, walnut pancakes, blueberry sauce, strawberry cookies, and 50-50 bar milkshakes. While Adam will probably lose the weight next month (because he starts a chemo that is an appetite suppressant and may make him nauseous), the rest of us are going to be 20 pounds heavier and, well, screwed. At least it’s been fun!
So, I have posted a couple pics of Adam right now. Think, chipmunk storing up for winter. Sooo cute! I was trying to get him to smile, you can see he was trying really hard not to. I finally tickled it out of him (and bribed him with popcorn).
Yesterday Adam had clinic. They did his first LP of Methotrexate in Phase 2 (i.e. Consolidation). Unfortunately, the procedure wasn't until 3 pm, so he was again tired, cranky, and ravenous. He asked to go to the "planetarium" as soon as he woke up from anesthesia (meaning "cafeteria"). Lol. Daddy took him to get pizza and Doritos. Mommy spoiled him last time, so there was nothing else he could be convinced to eat! Oops. Oh well. At least it's the little things that keep him happy. Coming home he was tired and had a headache. He napped on the couch for about an hour, woke up for a meatball sandwich (his third in three days), and a bath. Since he almost fell asleep in the bathtub, we turned in early. Both Adam and me!
The doctor said some things that made us feel pretty confident. 1) we almost made a record of how soon we were released from the hospital after he was diagnosed. I wanted to know how close we were.. maybe we could find a way that we did break the record. That's my alter-competitive-ego talking. 2) That he went into Consolidation much sooner than they expected. Another great sign of recovery and we've got one tough cookie. 3) his ANC levels were so high right now, we could go out and have some fun without much worrying. Basically, as long as we don't take him somewhere a sick person is going to breath on him, we're ok. So, we decided to take the kids to Gilroy Gardens since we had bought a membership over the summer (that we've, of course, only used once). 
Gilroy was fun, felt like the first thing normal we've all done in over a month, but also one of the most stressful experiences yet. I have never been so aware of germs nor felt so vulnerable in public. All I saw were grimy fingerprints left on the handlebars of the rides, stray hairs on seats, kids sucking their thumbs and then touching hand rails, and the man getting out of the car we were getting into coughing all over the place. Yuck! We were at the park for 2 hours total, but at least 30 minutes of that were bathroom breaks to wash our hands. I've never used so much hand sanitizer and soap - EVER! On a lighter note, coincidentally we saw Elaine and the Mendenhall clan there! I think the last time we ran into them was at the Monterey Bay Aquarium. Random, huh? You live 5 minutes from someone... Anyways, Katie was excited to see Adam, but he was being standoffish. Kind of his M-O right now - not real social and a little self conscious. I think he was mostly pretty tired by that time and starting to get cranky. That, or he already realizes girls have cooties? He asked to leave while we were in line for the super-crowded train ride, and we were happy to oblige. Nonetheless, the short trip to the theme park was a full day of fun for us. The kids don't realize how long they were there - they just know they went to Gilroy Gardens today. And I have pics to prove it :) We'll take what we can get. 
