So far living at the beach has exceeded our expectations of fun, family and friends. It seems like we see more people now than we did when we lived in Houston with everyone else. Kathleen came down for the week and we had a great time. The kids all fought over who would sleep with her, sit next to her at dinner, or walk next to her as we strolled the Strand. The week started off kinda shaky — rain expected for the rest of her vacation, with some sun shine here and there. Monday and Tuesday it poured all day long, you might have seen it on the weather channel — they were comparing it to TS Allison a few years back. Luckily it wasn’t that bad, but it did rain A LOT the first few days, so we did lots of baking, movies and laying around. Very relaxing. Wednesday the sun finally came out and we went to Shlitterbaun Waterpark. That was a BLAST! Sophie rode so many “big kid” rides and LOVED every minute of it, that girl is going to be trouble… she’s our dare devil/thrill seeker. She would go down a slide and I would see her face and think, “she’s going to start crying any minute now…”, but as she walked over to me with a semi-stunned expression on her face, eyes wide, mouth open, I would ask her “did you have fun? do you want to do that one again?”, knowing full well that her answer wouldn’t be so much in words as it would be in tears, she suddenly snapped out of her state of shock and screamed “THAT WAS FUN! I WANT TO DO THAT AGAIN!”.

I honestly don’t know how she made it out of the park alive that day. The girl has nerves of steel and muscles to match. Actually I know how she survived, she held on for dear life. We were on this one ride called the Dragon Blaster, it is a double tube ride, she was in the front and I was in the back. The boys had been talking about this ride non stop ever since one of their friends told them about it a few months back. They even did the virtual tour on line to see what the ride was like, so Sophie was going to go on this ride if for nothing else than to be part of the crowd. It didn’t look too bad (the park even rates the rides with circles, triangles and diamonds just like a ski resort to let you know how rough it will be) — it was rated one higher than the kiddy pool, so I thought we were okay. Whoa. I mean, WHOA! Of course when I sat my fat butt in the tube, it was more than snug, and poor little Soph could barely reach the handles with both arms. I didn’t notice this until we were at the top of the slide, positioned to go, on the conveyor belt thingy that clicks like a roller coaster to get you (more like propel you) down the slide. Honestly, I don’t know how she made it. We shoot down the slide, and no matter how big or small, fast or slow a ride is, I scream my head off like I’m on the Texas Cyclone at Astro World (may it RIP). So I’m screaming my head off, and it is dead silence from Sophie. We hit some significant drops and dips and head for the part of the slide with the tube and it suddenly gets very dark. I’m still screaming, finally Sophie breaks her silence and starts screaming, not the “holy-crap-when-is-this-going-to-end” kind of scream, but the “WOO-HOO!” kind. By some sort of divine intervention we make it to the end of the slide and shoot out of the tube unharmed and in one piece. Of course Sophie turns to me and screams “lets to that again!”. MY nerves are shot and ask her if we can take a break, but her answer is no, she wants to go on the big huge twisty turny slide that I took Joey on earlier (the one labeled with a diamond which is code for “holy-crap-when-is-this-thing going-to-end?!?!?” or better yet “wow, slipped discs DO hurt”.

The one Joey and I rode together, I think it’s called “Future Lawsuit” or something to that affect, kept him in stitches (figureatively). It was another “fun” tandem tube ride, but this time we faced each other as we were propelled over the falls, oh yeah, and there is plenty of room on this slide to spin around — I guess tossing your cookies appeals to some crowds… Anyway, as we were pushed to our death Joey couldn’t stop laughing at my screams for help. I think he really enjoyed seeing me scared out of my wits, yelling “I WANT MY MOMMY!” and getting thrown around like a rag doll. yeah, big fun.

Johnny and Kathleen loved it too. Because I spend a lot of time with Johnny on a pretty regular basis, I thought I would show some love to the other kids and hang with them while Kathleen and Johnny spent some time together. We would meet at certain times, switch groups, go on rides, meet, switch, eat and ride some more. I really had a great time, it was fun and I bought us all season passes, eventhough it’s hard to believe that some of these rides are actually legal in all 50 states.

Wednesday was International Skateboarding Day too. Of course we participated with a bunch of other kids and showed our support of the local skate shops. We all met at Ohana’s and skated for what seemed like 10 miles because of the blazing heat (hey, it’s not global warming, it’s ‘Freedom Heat’), but in actuality was only about a mile, to Ben and Jerry’s for some free ice cream.

Although each morning the kids woke up and asked if we could go to Shlitterbaun, we usually just hung out and relaxed — I think Kathleen is going to buy a hammock for her house when she gets home. It seemed like Saturday came so fast and the week flew by. Kathleen headed home on Saturday, and Anne and Claudia came down for the weekend. It worked out perfectly too. Today is my birthday, so Claudia took the kids for pizza and putt-putt while Mike and I had a lovely evening on the town — just the two of us. We acted like tourists too, walking the Strand, window shopping, it felt like we were on vacation. ALONE. We talked to each other without interruptions, and when there was a lull in the conversation we would turn to each other and say “WE ARE ALONE BABY!”. It was such a treat. We ate at a local restraint called Rudy and Paco’s — totally awesome! We haven’t had a great meal like that in a LONG time. Then when it was time to get the bill, our waitress told us that “Your bill has been taken care of by your friends, the Guffins” — our friends that live behind us, Gordon and Carolyn, bought our dinner! What an incredible evening! It really put a smile on my face and made it that more special.

We ended the weekend with a 5 mile bike ride on the seawall tonight. We watched the sunset, rode to the ice cream parlor, and was a very peaceful ending to a great week. Johnny is doing well, he looks great, feels great and plays hard everyday. His energy level is high (as is his temper with Sophie), I feel like I haven’t really seen him lately because he is so busy with his friends. And that is a good thing. I KNOW he feels well because he’s OUT doing things. His next clinic visit is on Wednesday, I have no worries or concerns, I know he will do great and that we will bump up his dosage to 75%. I will update more this week — Much Love To All,
Jules

Let’s all stare at the baby! I want to hold her too!

Johnny and Dr. Mahoney — I think Sophie took this one, but I still think the perspective is pretty cool.

We were running errands and Joey screams out “IT’S THE MYSTERY MACHINE!”. How cool would it be to drive this thing around, if only it ran on vegetable oil…

Brad Lidge and Johnny

Brad Lidge, Roy Oswalt and the Romano’s

Look at how great our seats are!

I wish I didn’t eat so much cotton candy….

Baby Tessa

Friday Johnny had an office visit to check his counts and get back on chemo. Since he has been off the oral chemo for almost three weeks his counts are excellent. His ANC went from 290 at the last visit to 2,970! Again, he is only going to start off at 50% and work his way up to 75%, I don’t think he will ever be able to tolerate 100% dosages.

While we were there I asked (yet, again) if Johnny could get in the water. I’m not exaggerating when I say we ask the doctor’s CONSTANTLY if it’s okay Johnny surfs. Mike read an article in one of his surfing magazines that told of a man who fell into a Honolulu harbor and died because he was infected by a flesh eating bacteria (Vibrio vulnificus). A flesh eating bacteria that is rare in Honolulu, but very common in the Gulf Coast region. Mike doesn’t want Johnny in the water — EVER. Not even to skim board (in ankle deep water — “what if he has a cut that’s invisible to the naked eye?!?!”). It’s easy for him to tell Johnny he can’t go in the water, because then Mike goes surfing for hours while I sit on the beach with Johnny trying to cheer him up. Anyway… back to the article. It contains a comedy of errors that led to this poor man’s demise. First he had liver complications (due to alcoholism), which lead to a compromised immune system, then Honolulu accidentally released a huge amount of raw sewage into the harbor (stagnant water — perfect breading grounds for Vibrio vulnificus), at which time the man in question just happened to be frequenting a local “watering hole”, got in a fight and fell into the harbor. Oh yeah, then promptly died due to septic shock.

I tried to comfort Mike by telling him Johnny hasn’t started drinking yet, so I’m sure his liver is still in realitively good condition. But all Mike saw was: immunosuppression (Johnny) + potentially open wounds (skinned knees, hands, elbows, etc.), + biohazardous waters (flesh eating bacteria) = No surfing for Johnny.

I told Dr. Mahoney the reason Mike is uncomfortable with Johnny getting in the water, and the reasons why I think he should be able to surf when the conditions are good (the water is checked on weekly basis and is given either an acceptable or unacceptable rating for beach goers), and Dr. Mahoney said anytime the conditions are unacceptable NO ONE should get in the water — immunosuppressed or not. We all agree on that. He also went on to say that “It is not TCH’s policy to tell kids they cannot go to the beach. The rest, you two have to work out…” HA! He also added that in the 30 years TCH has been operating they have yet to treat a child for the flesh eating bacteria. HA! HA!

Of course I don’t want to take chances with Johnny or any of us for that matter, but I also don’t want Johnny’s first summer at the beach to totally suck because we are afraid of some strange, rare disease that, odds are, won’t happen to him. Now that Mike and I have resolved our issues (mainly his), it’s raining today, and forecasted for the rest of the week. I’ll keep you posted on Johnny’s futrue surfing career.

Now on to more interesting things… Yesterday the Houston Chronicle came by to do a story on Johnny and his board. We actually did a phone interview the other day and the photographer came by yesterday and took some shots of Johnny. I’m not sure when it will run, but the photographer said it will run on a Thursday, either this Thursday or next. I will post the link when I know something more.

We also received a call from one of the doctor’s at TCH (Dr. Dryer totally rocks), to invite us to an Astros game, sit with the players families and go down to the locker rooms after the game. Of course we said YES! It was a 6:05 game versus KC — the Astro’s spanked ‘em too! The seats were incredible, we met Nicole Oswalt (Roy’s wife), and Lindsey Lidge (Brad’s wife). Super nice guys, they took the time to pose for pictures, chat and sign baseballs for the kids. Nicole also gave the kids baseball hats, and baseballs with cases, and 50$ in Astro’s money which we promptly used to get cotton candy (my tummy still hurts — a few bits = good, three BAGS = all night in the bathroom). The kids LOVED it — even Sophie. I think the highlight for the boys was doing the wave, Johnny got so excited when he saw it coming his way… “Here it comes! Here it comes! Get ready Joey!” Then he would just laugh his pants off afterward.

About the 9th inning Nicole took us (there was another family as well) downstairs. It’s not actually the locker room, but an area right outside of it, to meet the players. We spent awhile chatting, but it was almost 10PM, and we all needed our rest, we shook hands one more time, said our “Thank You’s”, exchanged numbers and headed home. What a great experience! Something we will all remember for a very long time.

Johnny’s next doctor’s appointment is next Wednesday, and Kathleen is in town for the week too! I will update more later!