WE LOVE LIVING AT THE BEACH!

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

GOOD OFFICE VISIT

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!

BABY JULIE HAS ARRIVED!

I went up to the hospital about 1:30 yesterday to be with my sister and Craig. I couldn't WAIT to watch the baby be born (or pop out), it's such a magical, wondrous, incredibly amazing experience, to actually watch a person be brought into this world. I think part of me wanted to see what it was like to be on the other side of child birth as well. I was telling my mom I must be an adrenaline junkie or something, I always have to be where the action is.

Kristin's doctor broke her water about 12 or 1, and we all thought it would go pretty fast from that point on -- emphasis on "thought". Three O'clock passed, four o' clock passed, FIVE O' CLOCK passed, then six o' clock started creeping up on us. During this time Kristin and Craig worked and pushed and tried their hardest to get baby Julie out. Poor Kris pushed for an hour at a time with short breaks in between. I had SO many questions, and tried my hardest to be quiet. I finally asked "So at what point do you get the doctor?", and the nurses reply was "When the baby is ready to come out". I wanted to say "So when the hell is THAT?". But I didn't.

At one point the nurse (who by the way, was very competent, and patient with me), noticed that baby Julie was turned sideways. Meaning that instead of her head facing down, it was facing to the right, and this is the reason she is having a hard time coming out. She had Kris do a couple of different positions to try and persuade the baby into the correct position. Kris had to lay on her side for 20 minutes to see if that would move the baby. After pushing for about 30 minutes we decided that didn't do the trick. So they emptied her bladder -- man it was full! It was like Austin Powers after they defrosted him, Craig had to quickly find another bucket thingy just in case. Okay, probably TMI for most of you, but at the time it was pretty damn funny. At first everyone was quiet, but then it started taking so long that we were having normal conversations like nothing was going on.

But I digress.... we all thought surely THAT would give baby Julie AMPLE room to do her flip and just glide right out. But first Kristin's doctor wanted her to sit completely upright for 30 minutes before she pushed. During all of this, we asked "so if this doesn't work, what next?" -- we all knew the answer though-- C-section. Kristin DID NOT want a c-section, I can't say I blame her. Who wants (or is prepared for) major surgery while taking care of a new born? While Kristin was sitting upright for 30 minutes Craig went to go get something to eat. Cool, now I can be the nosy sister and ask all of the questions that I have been holding back for the past 4 hours like:

What happens to Kristin during a c-section
What happens to baby Julie
How long does it take
What complications do you foresee
When can I see the baby
When can I see Kristin
Can I be there with her
How quickly will you/the doctor decide to do the c-section
Is a c-section the best thing for Kris and the baby
Is baby Julie stuck because she's so dang huge

By the time the nurse answered all of my questions, Craig came back in the room. WHEW! It was push time now. 6:06pm had passed and Kristin and Craig decided that 6 was their new lucky number, after all it was 6/6/06 and they were in room six. Mike later asked me if the baby couldn't come out because her horns kept getting stuck.... always the comedian. Anyway, Kristin pushed for 30 minutes with no luck. Looks like she's headed for surgery.

We all prepared (noticed I used "we" like I was with them) for Kristin to go to surgery once the doctor checked her out and assured her that she wouldn't do this just to do it. Dr. Gunn didn't like that the baby's heart beat dropped significantly (they call it D-cell) after Kristin pushed. Normally the heartbeat should be 130-140, but after Kristin pushed it would drop below 60. This could be caused by a number of (scary) things. The umbilical cord could be wrapped around the baby, or the baby's shoulders could be pressed against it, I think she added a few other (less frightening) scenarios but those are the ones that echo in your ears. As we (notice I am using that word again) started wheeling Kristin off to surgery I am literally two steps behind everyone, and when the nurse turns around to tell me something I am so close we bump into each other, her words are "you. Stay here."

Oh... Right... Me... I stay here. I will be here if you need me to fill in at the last minute. But your right, someone needs to stay with the stuff. 20 minutes right? Just call me if you need me. I'll be right here...

Then they completely kicked me out of L&D, -- they needed the room. I made a few phone calls to update the grandparents and told them I will call them back when Kristin is done. Craig came and got me about 20 minutes later -- with baby Julie. Craig and the nurse were on their way to take her to the nursery to get all of her important numbers (weight, length, etc.). She is beautiful. Such and angel. I couldn't stop looking at her. What a miracle. Craig said "say hello to Tessa Ann". I said "hello baby" and in my mind I added ... Julie...

Baby Julie (or Tessa if your her parents) was born at 7:05pm, 6/6/06, 8 pounds 12 oz., 20 1/4 inches long. I wish I had a camera. We watched them do all the things they do to newborns. Then they fed her. Man, did she drink too. At least 1/2 the bottle (go Julie, go Julie, go Julie). She is strong and healthy, and will be able to come home with Kristin and Craig on Friday. I waited until about 9:30pm for Kristin to get back to her room. I wanted to see her before I left. She is doing fine, as expected, and as long as everything goes well, should be home by Friday. Kristin told me that the doctor said her umbilical cord was too short, that's why she was stuck -- poor thing was tethered to her momma. Also, Krisitn did a really neat thing, she donated her cord blood to MD Anderson to be used for transplant or research. I thought that was very noble, it made me proud and happy at the same time. If she didn't then it would be throw away and couldn't be used to save a life.

So, there it is. I'm an Aunt again (crazy Aunt Julie). Instead of the word "crazy", which has such a bad rap, I like to think of myself as the Auntie Mame type, except without all of the jewelry and fine clothing -- I have kids instead. In the words of Auntie Mame, "Life is a smorgasbord, and most poor suckers are starving to death!

HOME ON SATURDAY

Hospital

Hospital

Cookies from Mike's office! Okay, I ate most of them...

Johnny was finally released on Saturday! WOO HOO! Sorry I didn't update sooner -- it's been a little crazy. His counts went from 50 on Friday to 270 on Saturday, I asked if someone mixed up the blood or something because his numbers are all over the board.

Monday was a scheduled lab/pentamidine visit, that turned into an office visit to see how he was improving. All of his numbers are up, well, his ANC is the same at 270, but his HGB and platelets are way up! He looks good, is acting fine (crazy), and eating well. He actually gained 4 pounds since his last visit! It's all in his belly too... but don't tell him.

I stayed up until 1:30 last night TRYING to organize the house. I was tired of stepping over stuff and having piles of who-knows-what all over the place. It seems like all Mike and I did on Sunday was try to "organize" things, and it looks worse today than it did when we started! It will all get done soon though -- I promise you that!

We keep asking each other "when are we officially living here?", and we both just shrug our shoulders hoping the other person will make the determination for us. So I will take the lead, we are officially here. I canceled the Houston phone and forwarded the mail, so I guess that means this is our new house. Of course once we sell the Houston house it will be officially official, hopefully that will be sooner rather than later.

Super good news is that at 8:30am my sister called me to tell me she is having contractions! WOO HOO! She told me she didn't plan on having her baby on 6/6/06, so I told her that now she HAS to name her JULIE ( I was the demon seed when I was little -- okay -- maybe just through middle school, well if my mom is reading this she probably saying HA! so maybe I was bad through high school, but then after that I was living with my sister so she really knows what I was like, she is probably reading this saying WHAT?!, so okay -- most of my life I have been pretty difficult).

Anyway -- I want to go see her and be with her when the baby is born, but I don't want to disrupt the balance between her and Craig, it can be very stressful at times when your in L&D. I hope he lets me in though... I will keep you posted on any new developments!

BUT HE LOOKS GOOD...

Joey!

Joey saw the guy catch this shark. He was about 10 feet away from the kids surfing and Joey said to Mike, "Is that a Salmon?"

LOOK AT THE SHARK!

One down, a million more to go...

I was up at the hospital all day today with the kids. Johnny seems to be fine, of course he's not eating, but his energy level seems to be almost normal. His counts on the other hand have dropped even lower than yesterday's -- his ANC is 50, HGB is 9, and platelets are 60. CRAZY. I don't know why, the doctor's don't know why, it's just they way Johnny is I guess. He won't be released until his counts come up, we were ALL expecting him to come home today -- it was even written in his orders that if his numbers were up, he was out! Who knows when he will come home...

Yesterday as I was talking to some mom's I have met over the past year, one of them had been there with her son for over two weeks. He's obviously having a hard time, but she also told me that he went into septic shock during his stay. It was the middle of the night, his fever was somewhat down and after a routine blood pressure/temp check they rushed him into ICU. His blood pressure was 40/60, and it was all due to FEVER. A perfect example of "you never know what is going on with these kids when they have a fever..." Okay, okay, I get it! THAT'S why it is SO important that we take Johnny in EVERY time he has a fever, the moment we find out. I promise I will -- cross my heart!

Mike is staying up at TCH with Johnny again tonight, hopefully we will know more tomorrow about when Johnny might come home. I miss my boys! I'm exhausted, I will update tomorrow night when I get home from TCH.

IN WITH FEVER

A Day at the Beach!

The boys out for a quick surf session

Mike and Sophie mowing the grass

Johnny was scheduled for an office visit on Wednesday at 10am, but we decided to take him a little early -- about 2:00am instead. Joey couldn't sleep and said he "felt sick" (he just wanted to sleep with us...), so Mike checked his temp. (normal of course), and then Johnny's just for comparison and HE was on fire-- 103.7. Mike asked me if I wanted to go to the ER with Johnny or if I wanted him to go. I wanted Mike to go, I had enough of the ER/TCH for awhile, and thought I could get a few things done around the house instead -- I know that sounds horrible, but I was just so tired and didn't think I could make it one more time.

I think it's viral, and we might not ever know what type of infection he has. So far all of the blood cultures have come back negative for anything bacteria related - WHEW! After talking to the doctor's, it's interesting to know that most of the time you get a bacterial infection it's from your own body. He hasn't had a fever since early Wednesday morning, but his counts have really taken a beating. Last week his HGB was around 9, and they transfuse at 8 and lower. All weekend I had a feeling he needed blood, low energy, crabby, pale and his gums were a very light pink. His HGB was 7 on Wednesday and today he is 10 (11-15 is normal). He received 250cc of blood yesterday, and he really perked up! He told Mike, "I feel better now that I'm all full of blood!".

PLEASE DONATE BLOOD! It's so important!

Of course all of this means that we are NOT going to the Faust Ranch this weekend. The kids are BUMMED. I think Johnny knew before we even took his temp, when we told him he we had to go to TCH he started crying and throwing a temper tantrum, something he NEVER does. He was punching the pillows and crying and saying he hated the hospital (can't say I blame him), I felt so bad for him. Mike and I completely understood, although I wasn't even thinking about the special weekend plans, we tried to console him the best we could. As he laid on the couch in a ball and cried, he suddenly stopped, calmed himself down and said to us "okay, I'm ready", and walked out the door. It made me so sad. I know something better will come along for him though...

Last night Joey wanted to stay with the boys so Sophie and I headed up to the Houston house. Our house is now officially up for sale. Today I was able to run some errands and then went up to relieve Mike so he could get some work done, I played with Johnny and it also gave him time to fight with Sophie for a while -- he's ALWAYS up for that! We are not sure when Johnny will be released, it all depends on his counts. His ANC and WBC's are very low -- 180 today, and it appears they are on their way up (they were 170 yesterday). Until they are up to at least 500, he can't go home. We are thinking it might be at least Saturday before they give him the okay to go.

May 26 was the one year mark for Johnny's diagnosis (May 27 was his first dose of chemo). I kept looking at my watch waiting for 8:10pm, his pediatrician's office visit the day we found out. As the time grew closer, I could feel myself getting anxious. We were all at the beach, the boys were surfing, and Sophie and I were watching them. About 7:40pm, Sophie distracted me for quite awhile and the time came and went without incident. I actually breathed a sigh of relief that the next time I looked at my watch it was almost 8:45, -- time to go home to clean up. It is so awesome that we are at the beach now -- walking distance. Watching the sunset, listening to the pelicans and sea gulls, the smell of the rotting sea weed...

The kids and I are at the beach house now, and will go back up to TCH tomorrow around lunch, hopefully by then we will have a better idea of when they will spring him -- I will keep you posted!

xoxo Jules

DONATE BLOOD! DONATE BLOOD! DONATE BLOOD! DONATE BLOOD! DONATE BLOOD! DONATE BLOOD! DONATE BLOOD!