Friday was clinic day — it went okay. Johnny’s counts are low (imagine that), his ANC is 750, everything else dropped a bit too, but he was still able to get chemo. The clinic was crazy busy — we were the last ones booked in the procedure pod, so we didn’t get a room until 12 or so. Johnny, always the optimist, said; “At least the HOV lane will be open on our way home!”. That it will kid…
As we were waiting, one of our favorite Doc’s came in, camera crew in tow and wanted to know if Fox News could do an interview with Johnny. It wasn’t the local station — something to do with the sports cable channels or something. Of course we agreed. It only lasted about 5 minutes, and to tell you the truth I can’t remember what we talked about specifically, except that cancer treatment doesn’t get in Johnny’s way and he’s not bothered by it (his words). I added that it’s doctor’s and nurses like Dr. Dryer that enable Johnny to be a kid — his health is important, but being able to be a kid always takes precedence. Like, say for example, moving chemo schedules for surfing contests. I found out we are really skipping a week of normal everyday meds, not just moving things up a week. I will find out if we can make it up at the end of treatment, or regardless, it all stops on 9/7/08.
I was looking at the “road map” or treatment schedule from now until school starts, trying to see where the big days fall in relationship to holidays, birthdays and vacations. I might have to re-evaluate a few things before I ask to “move” future chemo days.
Okay, back to the clinic. I can tell that the big days are getting to Johnny. I wish I could tell you what he is thinking, or what his reaction will be, but the kid is so flippin’ hard to read. He could be thinking about bunnies and ponies or about something very dark, we have no idea.
We do however, have Dr. Muscal who is very clever when she asks him questions, using her little Johnny voice without being condescending. She gets him to open up a bit about how he’s feeling, what he remembers from the last spinal. I told her next time I will leave the room and see if he opens up more without me breathing down his neck. I think he has a special bond with her because she has been with him since the day he was diagnosed. Instead of asking him how his legs feel (the chemo weakens his muscles, it can be really random too, he could just be walking along and suddenly fall), she asks him in a way that means something to him “how are your ollies? can you still get them as high as you used to?”.
As we got him into position and the meds feed into his veins, he calmly reached for my hand and didn’t let go. I could tell he was scared. I ask for 3 verced — the stuff that makes him sleepy, I think he feels and remembers more than he’s telling us, because as soon as the procedure is over, he opens his eyes and coheriently talks to me. If I even so much as see his eyes move or a muscle flinch, I ask for more. Johnny is truly a hero and displays more courage than anyone can imagine when it comes to days like this, I want it to be as pain free and memory free as possible for him. So many kids fight days like these, cry and scream and I don’t blame them one bit, it doesn’t make them any less of a hero or courageous. He’s just so strong and adult like about the whole thing, I can’t help but proud of the little guy.
Everything goes smoothly, the doctors do their thing and I stay with Johnny as he recovers. We talk about what he wants to eat, what games he wants to play when we get home. After 30 minutes he is able to sit up, eat and drink — then we both want to go home. As we were gathering our belongings and chatting with the nurses, our nurse says, “let me just take a quick peek before you go…” and as she lifted his shirt we both said “WHOA!”. I almost fainted, my knees were weak and I suddenly felt very woozy. The skin around the spot where the needle goes in was raised about 1/2″ — maybe more — probably a lot less, I couldn’t get a good look with my head between my knees trying my hardest not to faint. He asked, “what it is?” I told him that there was just a little bump around the band aid, no big deal.
Dr. Dryer came back in to check him out. She assured us that if he was leaking spinal fluid it would be coming out of the hole where the needle was — and it wasn’t, it wasn’t bruised, looked okay, he didn’t have any headaches, so it must have been a reaction from the numbing meds they shoot all around his spine before they do the tap. I was officially freaked out. It took me all night to unwind, and then I couldn’t sleep. My mind wandered to all sorts of ugly thoughts of infection and what if that was chemo just sitting on his spine type of thoughts. He slept with Mike and I, just so we could stare at him as he slept peacefully and dreamed of taking out his new surf board or what type of trucks he should get for his skateboard, or bunnies or ponies or whatever the little guy dreams of. Mike and I on the other hand just stared at him until the sun came up. Somehow, a sunrise gives you a feeling of “we made it — it’s a new day — now I’m going to sleep! See you tonight about 10pm when I wake up”.
Mike and I were terrified to let him do anything but get up to go to the bathroom all weekend, even though Dr. Dryer told us he will be just fine (and he is). Johnny was okay with our restrictions for about 10 minutes Saturday morning, then once it sank in that he was restricted to our bedroom, he just got mad. Real mad. He wouldn’t speak to us all weekend, with the exception of “GET ME A POPSICLE!NOW!AND MAKE SURE IT’S NOT ORANGE!I DON’T LIKE ORANGE!”, “Uh, Johnny, were out of…” “NO!YOUR GOING TO THE STORE TO GET ME MY POPSICLE’S!NOW!”,… “Yes, Sire, anything else Sire?”.
Anyway, he skated all day yesterday, felt great, looked great, and Mike and I survived (even though Mike watched over him like a hawk). Besides, he was going to skate whether we liked it or not, he even laid out his clothes Saturday night knowing that was his mission the next day. His doctor’s wouldn’t want it any other way, he’s just doing what they told him to do, “If you feel like it, do it!”.
With low ANC’s, chemo and a and maybe a contest, I asked if we should come back this week to check his counts. We go back Thursday to make sure he’s not neutropenic (ANC lower than 500), if he is, he can’t get in the water or be around crowds, or go to school for that matter until it’s over 500. If his counts are fine, and Dr. Dryer talks Mike and I into it, he can participate in the contest this weekend — (as long as there is surf).
