Random photos from the past month or so....
Okay! I've missed a few weeks on the blog -- lots to catch up on....
First off -- Johnny WON his first official grom contest the weekend before school started! It was the Ashlyn Would Go Grom Contest in honor of our friend Ashlyn, it was a very touching day to say the least. Storms surrounded the event, with a patch of blue sky that hung over the competitors area. It was as if Ashlyn was looking down on us, keeping the skies clear as long as she could, we stopped counting the amount of water spouts around us, we knew they weren't headed in our direction. Johnny won all three heats -- first place in the micro grom! It was funny, when I was out in the water with him he came up to me as asked "I wonder if I will place 3rd or 4th?". Then after the heat we heard his name over the loud speaker and I told him to go see what the officials needed him for, he came running back with a huge smile on his face -- " I WON!".
That was Saturday. After the contest we spent the rest of the weekend getting ready for the first day of school on Monday. MAN, the summer went by so fast. The boys were super excited for school, although Johnny had his doubts about the whole idea. The thing that excited them the most was riding the BUS -- aka the cheese wagon. I drive them to school (the bus comes at 6:30AM!!!!), and they ride the bus home in the afternoon. They both said it was fun, and Joey thought the whole bus felt "greasy" so he was afraid to touch anything. Johnny didn't know there were girl and boy sides, so he promptly sat on the girls side. Joey brought it to his attention and then they sat together.
Johnny says he hates school and doesn't want to go. When I ask him why, he just shrugs his shoulders and looks down. I think he's scared. He doesn't like crowds, and he actually puts a lot of pressure on himself to get 100% on everything. So far he has been doing really well (okay, it's only been a week...). Joey loves being back in school. Tonight was parent/teacher night, and his teacher said he is definitely the leader, and caretaker of the group. He wants to be a play in a few weeks the fifth grade is putting on, he is the LEAD -- Abe Lincoln! He will do great!
The first day of school went well, the boys were stoked to be together again. Johnny seemed super hyper, and was bouncing off the walls all day and night. About 9PM Mike felt him and thought he felt warm -- he was. 101.1. Mike took him to TCH ER, and luckily enough they were released that morning -- they got home at 5:30AM, so Johnny and Mike both stayed home on Tuesday. Johnny was fine, just a small fever, like he had before SoCal. I asked his doctors if it is the chemo (vincristine), and they said no. But I really feel it is. The past two times he's had it, just about one week later, fever. It might not be directly due to chemo, but I think it's just his body trying to recover. We go again tomorrow, and I will bring it up then.
It seems like since we have been home from our CA trip, things have been crazy -- the weekend of the Grom contest Mike flew out to CA to pick up his truck, so he missed Johnny winning the contest. But there is another one this weekend, and we will all be there to watch!
The remodeling of the house is going along well, it feels like all I have been doing is painting - priming - painting - priming. I truly think my I.Q. has dropped about 10 points over the past week due to all of the paint fumes. I was trying to help Johnny with his homework one night and Mike looked it over not knowing I had already helped him. He just laughed at all of my incomplete sentences I "helped" him with. He told me to lay off the primers for awhile.
We checked out Sophie's new pre-school last week. It is incredible!!! I love it, the boys love it, and most of all Sophie loves it. They do cooking, science lab, music, and even have a pet tarantula and iguana. They change rooms for each activity, each room is ready to go for that activity. It's the best pre=school I have ever seen. Sophie starts the Wednesday after Labor Day. WOO HOO -- party at the Romano's!
Suddenly there has been a resurgence of interest in Johnny's skateboard. After the Houston Chronicle ran a story, Channel 2 (NBC) called and wanted to do a piece on him as well. They shot some stuff a few weeks ago, and I told them about the contest this weekend and they want to shoot that too. I will let you know when it airs -- but I'm pretty sure sometime next week to coincide with the release of the board (9/8).
The Gulf Coast Regional Blood Center is having it's big drive this week and asked Mike and I too talk to Channel 11 (CBS). After the reporter heard about Johnny, she wanted to do a whole story about him and us as a family and how donating has changed our lives. They were nice enough to come to the house in Galveston, and it was a total mess! I was so embarrassed. But at least the kitchen was clean enough for them to get some stuff without all of the "tester paints" showing in the background. I'm not exactly sure when it will air, but it will be this week, during the 5 and 6 o'clock broadcasts.
I know there is so much more, but really, my brain is fried. I'm surprised I can still type, much less formulate sentences.
Wednesday, August 09, 2006
BMX guy who designed the ramps
BMX area before the crowds
The jump that made history! Travis Pastrana
More XGames history
Tressells --San Juan Capistrano -- Old Man's
Tressells -- San Juan Capistrano
Our friend Barry has a contact at ESPN and said he would work on getting us in if we wanted. Of course we took him up on it. I really just wanted someone to tell me where to go and what time to be there -- if you look at the schedule it is very overwhelming, and I had no idea where to start. Barry helped with all of that. An Intern from ESPN, Jen, called us and had everything ready to go, all we had to do was get there.
At the time it seemed simple, but here's the weird random thing. I was getting the kids out of the car in a parking lot earlier in the week, when this van/trailer next to me started moving forward (the van was in the spot in front, and the trailer was next to me). When the guy pulled his van out (and probably turned the wheel too much), his trailer caught my drivers side door and kept on going. The door was now "taco-ed", as mike would affectionately call it, it was bent so far forward it was parallel with the wheel well. Luckily, no one was hurt. I almost lost my voice screaming, (grandma, don't read this part:) "WHAT THE F@#$! HOLY S@#$! STOP THE F&^%ING TRUCK". I think that scared the kids more than anything. The guy had insurance, so we had that going for us -- which is nice.
But now how do we get home? Or, more importantly how do we get to the XGames? I know there are a lot of people out there thinking "well, it was Julie driving, what do you expect..." -- hey, I wasn't even in the truck, it was turned off and the keys were in my purse, so please don't use my prior "record" as any indication or influence...
Mike and I thought A LOT about what to do, because the door wasn't even close to being able to close shut. Even when we forced it as hard as we could, it came within about 1.5 - 2 feet of actually closing. Mike did get it close enough to turn off the interior light and that annoying buzzing sound when the key is left in the ignition. Could you imagine driving across the country with the door half opened and the buzzing in the background? -- Although you probably wouldn't hear it with all of the road noise. He thought he could drive it home like that, but didn't feel comfortable with Anne and Joey coming along. I asked the other guy's insurance company and ours if it is even legal, and they quickly ignored me and changed the subject. No one knew. I think the deciding factor was when Mike came home after driving with the truck door strapped down but still open, he looked down and noticed that his wallet was just about to fall out. Now THAT would suck. Driving across the blazing hot desert, door ajar, ears ringing from the deafening noise, stopping to get a bite to eat and realizing your wallet fell out somewhere between Flagstaff and El Paso.
We called Kathleen, and without even hearing the entire story she FedEx-ed us some tickets. We all flew home together, it was pretty fun actually. Kathleen totally ROCKS! But she already knew that...
Anyway, on to the real excitement -- the XGames.
On Thursday and Friday it was practice sessions and the place was pretty much a ghost town. It was record heat temps, I made Johnny use a stroller, but he was too pumped to use it. We met some other families that were with Make A Wish, their kids wanted to come to the XGames as their Wish. We watched the BMX guys practice and even went down on the ramps to get some autographs and meet the pros. I had no idea who any of the people were, but Johnny was filling me in. Over the past year he has caught up on all of the action sports stars by watching Fuel. He would tell me someone's name and all about their "First Hand" (show spotlighting a particular pro), or when they were on the Daily Habit, or whatever.
Then it was on to the street session (skating). One of the guys from Real (the company who made Johnny's signature board) was there -- Dennis. This seemed to interest everyone Anne, Joey, Johnny, the other kids from Make A Wish, everyone except Sophie -- imagine that. We had "Family and Friends" access which meant we could go pretty much anywhere we wanted to, when we wanted to. Both Thursday and Friday we only stayed about 2 hours before Johnny was ready to go home. But we did go back Friday night to watch the Moto X.
The seats were AWESOME. Right down in the front, close enough to have my teeth coated with dirt when the guys landed. We were lucky enough to watch Travis Pastrana make XGames and Moto X history and see him land a double flip. That was so cool. We were close enough we could have given him a high five -- we tried, but he couldn't hear us over the screaming fans and media attention.
Our contact person Jen, stopped by to meet us and take us to the athletes lounge. It was pretty cool. Again, I only knew the big names, but everyone else knew the pros. Hey -- I saw Sandra Bullock and Jesse James! Anyway, it was amazing. I know I have used that word over and over again, but it truly was.
Mike came with us Friday night and Saturday, he was pretty impressed too. On Saturday, we were late getting to the Games. They started at 9am and we didn't even get out of bed until 10am. Jen called us to find out where the heck we were because she wanted to take us to the athlete's lounge. Saturday we met Bob Burnquist (my favorite because he is always smiling), and Bucky Lasek -- Johnny favorite since he was about two. Meeting Bucky really made me get all choked up again. Just because he has always been Johnny's favorite and he was so nice to us and played around with Johnny, not even knowing his story.
The only guys we didn't meet, that we would have loved to were, Tony Hawk (of course), and Shawn White. Mike said, "the kids aren't even into Tony Hawk, besides he doesn't even skate anymore.". NOT INTO TONY HAWK?!?! What planet do you live on? We've been to every Boom Boom Huck Jam in Texas, have the remote controlled Tony Hawk (he's old, beat up and naked now, but he still works), and every finger board ramp I could find on Ebay. Johnny doesn't make a move without a finger board in his hand. I step on those frickin'things in the middle of the night, and vacuum the microscopic pieces up daily. But I digress...
We did see them from a distance during the Vert competition. That was cool.
Surprisingly, Joey is totally into the Moto X -- the guys that call themselves The Metal Militia, most notably, Brian Degan. Joey knows all about comic books and video games (I dread the day he asks me to drive him to one of those nerdy conventions, I glance in the rear view mirrow only to see him wearing a Captain America cape and Spock ears...). He actually thinks he's getting a Moto x bike for Christmas, he's even talking CC's and everything. Of course in a very technical way, body weight, inertia, gravity, blah, blah, blah, etc... I kinda tuned the rest of it out... But he really wanted to meet some of those guys. Crazy huh? You think you know your kids...
Johnny was able to see the street and vert stuff as well as some Moto X. We left about 3pm, it was too crowded and we were all just too tired. We came, we saw, we conquered!
The summer vacation of 2004 was fun, it was before Johnny was diagnosed, and it was the first time in a long time I didn't have to worry about naps or diapers (possibly something only a mother would use as a gauge as to whether something is fun or not). I thought it would be hard to beat.
So far, the summer of 2006 totally ROCKS and beats 2004 hands down!
Not happy waiting for his spinal... Joey made him laugh though.
Today was Johnny's first clinic visit since before vacation. He did really well considering that he had to get a spinal tap. He couldn't sleep last night, and was up until 1am tossing and turning. Poor thing.
His counts were awesome -- ANC 1,220, HGB 12.5 and platelets 188. I was totally expecting something far worse, but was relieved when the official counts came back. The mouth sores are par for the course for him, and his nose seems to be fine today, so the doctor's went ahead with the LP (spinal). He is still only at 50% of his oral chemo and it will probably stay that way for a long time (maybe until 2008...). We are also going to try for clinic visits every two weeks as scheduled, but his counts wouldn't allow happen until now.
I asked about going to school this year, and both doctors said yes! WOO HOO! I don't know how excited Johnny feels about this, but with Sophie and Johnny both in school I don't know what I'm going to do with my time... the social worker gave us a "Going Back to School" package for the kids and teachers, and I asked if there was one for the parents too. They laughed, but I was half way serious...
August 21, 2006 will be Johnny's first day of school -- third grade, new school -- the works. He hasn't been to school since first grade. It's kinda hard to comprehend. He will have a bunch of friends to keep him busy though. I think after the first week, he will fit right in, no problem.!
Tuesday, August 08, 2006
Johnny shaking Rob's hand after his victory heat
Rob after the win
The US Open crowds -- it's insane!
The Big Kahuna
Johnny on stage with Rob and the USOS winners
I have a bunch more photos to show you, but this is the rest of the weekend with Rob. I will try and post an update tomorrow about our trip to the XGames (it was so cool), and the truck door being ripped off by some guys trailer (it's never a dull moment with us!), but more importantly Johnny's clinic visit in the morning.
He is scheduled for a spinal tap, but luckily no other chemo. I will be interested to see what his counts are, this has been the longest we have gone without going to the clinic -- or at least it feels like it. Johnny is really tired from all of the action the past two weeks, and not a lot of down time. He has a mouth sore and a runny nose, but seems to be okay otherwise. I will post again tomorrow when we get back.