THE WORKS

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).

photos from the past two months...

See! I told ya there were PINK POODLES at the parade! that's way too much work for me...



Aarrrr matey!


Corpus Christi (CRP) Skate Park



CRP Skate Park, a short detour on their way to pick up new surf boards...






CRP Skate park during Spring Break



These were the CUTEST cupcakes ever!



Mike and Gary, and Mike's new board...



Happy 5th birthday Sophie!!!



A week later, the little boys picked up their new boards!






Fat Tuesday on the Strand in Galveston.



Mardi Gras Parade -- Pet Parade.



I thought our dogs were BIG! woof!

TONIGHT

Okay, sorry for the short notice, but tonight is the night that Fuel TV is supposed do a piece about Johnny and his skateboard. Fuel TV (for those of you that don't have kids under the age of 18) is a sports channel and all they cover is action sports -- stuff you would see at the XGames. It is Johnny's F A V O R I T E channel, so we are pretty excited about it. If you are in the Houston area, it is channel 111, and will be on about 8PM, and then run a few times after that.

SPRING BREAK UPDATE:
We all survived without incident! WOO HOO! Kathleen and a friend came down from Dallas and brought their dogs too. The dogs almost outnumbered the people at times, and after a few hours, everyone got along fine. Kathleen's dog, Murphy, is still a puppy and just wanted everyone to get along and play. So did Slater (our boy doodle, you know the one with the rasta upfront and bad 80's perm in the back --it's weird we know), but his big sister CoCo wouldn't have any of it and tried to shut them both down when they started rough housing. Then Kim's dog would step in with her "OH NO YOU DIN'T JUST TRY TO BITE MY BOY MURPHY", attitude. The humans had to run interference every now and then. But Murphy wouldn't let it get him down. He kept after CoCo, and I swear I heard him say; "She is going to play with me and like it before this trip is over!". By the second to the last day, CoCo gave in and tried to play. Keep in mind that CoCo and Slater are 75+lbs. and Murphy is just a snack to them at 12 lbs. -- wet. You could tell they were trying their hardest not to crush the little guy -- it was pretty cute.

Our friends Wendy and her kids came down for a day at Schlitterbahn. Wednesday it was -- rain or shine. And BOY DID IT RAIN. We went anyway, because part of the park is covered, but if it's lighting no matter what, we have to get out. We spent the first two hours sitting, eating pizza and catching up, W A I T I N G for the storm to pass. It did finally and we all had a great time. As Wendy and I were floating down the river watching our kids whiz (eeww... not a good word to use when talking about a waterpark) by us uncontrollably, I asked her if the park in New Brunsfuls is this crazy and out of control, and she said "yes". We had fun, but I just don't get how the "lazy river" passed all federal and state safety inspections! Johnny only had two melt downs when we all were separated -- the kid HATES crowds and feeling out of his own control. He screams safety instructions to everyone like we are going down on the Titanic or something "GRAB MY HAND! DONT LET GO! WE CAN MAKE IT TO SHORE! JUST HOLD ON TIGHT!" I told him if he gets scared just frickin' stand up -- it's only waist high for pete's sake!

Anyway, our days were relaxed most of the time, we all had fun and believe it or not, no children were harmed. I'm actually looking forward to summer vacation now.

Johnny's counts were great last week, so no real worries there. This Friday is the big stuff (spinal, vincristine, etc.) and I'm sure everything is go fine. I told him that he needs to eat really well the next few weeks so he can build his strength for the contest at the end of the month. I don't want any unexpected ER visits! So far, he's been eating his usual Johnny diet, Popsicles and PB&J's.

Mike and I are trying to convince him to cut his hair again. I trimmed it, but it still looks like crap. When Kathleen was here she saw it during the day (and probably a few days dirty), so it looked passable. She said, "Hey man, it looks okay to me, you should keep it.". Then the next morning after he woke up and Kathleen stopped laughing, she said, "dude, maybe it's time for a trim...". After I trimmed it Joey said to him "now we both have bad hair cuts...". It's just really wiry and course. I'm not asking to shave it or anything, because it's too thin, and I think it will really make him look like he's still on chemo. I just want it about an inch and a half or two inches all the way around. Like it did last summer, short and curly. But most of all MANAGEABLE....

Anyone still on chemo that has the same problem?

Better go get the kids at school! I'll post photos later

love jules

ITS ALMOST SPRING BREAK...!

Yikes! I'm so not ready for spring break! We plan to stay local, no out of town trips, just lay low.

Johnny had a few visits since the last update -- one ER and a few clinic. Luckily we were not admitted, but it took all of us pretty much the rest of the week to recover from the loss of sleep. His counts are great - last Tuesday/Wednesday at the ER, his ANC was 3,900!, then at clinic on Thursday it was still 2,900. He also had chemo, and seems to be doing okay this time. Very tired, but otherwise okay.... Everything else looked good, just some sort of virius/ear infection that made his fever spike to 104. Sophie was also home sick with the "viral"-du jour last week too. Joey is our ROCK -- he's been well for a while now.

Sophie actually turned FIVE on February 19th, so she had, like, three brithday parties. Two "family" parties, and one friend party at this place on the Island called Ellie's where she painted pottery with a few of her friends. It also happens to be the day she started getting sick too -- poor thing.

We went to two more Mardi Gras parades -- one was a pet parade with every kind of pet you could think of -- even a giant turtle! No pet parade is complete without the Standard Pink Poodle either. It was fun, we took the doodles and they were SO good -- I was pround of them. Of course they about soiled themselves when the horse behind us got too close. We all walked the parade and didn't expect the enoumous turn out it had -- we didn't even finish the parade because it was so long. Mike loved the attenention the doodles got, he heard someone say "hey! look! surfer dogs!", that made his day.

We also went to the Fat Tuesday parade too. It was great -- hardly any crowds -- which is nice when you have three kids in tow. Definately something I would do again...

Johnny's next office visit is 3/16 for labs (counts) and pentamadine, then 3/23 for the big stuff. Spinal, vincristine -- the works. We actually moved it up a week so he could go to a surfing contest at the end of the month. The doctors always get a kick out of our schedule and how we plan around contests and surfing.

FYI:
If anyone has the cable channel "Fuel TV", keep your eyes peeled for a spot about Johnny's skateboard during the "Daily Habit" this week. When I find out what day it will air, I will let you know.

Also, the Blood Center will be doing another spot with Johnny for their commercial as well. They gave Houston TV stations both commercials to choose from, one with all of the recipients, and one with Johnny and Matt, and all they ever play is the one with Johnny and Matt! I guess he's a big hit!

...having a hard time posting photos and working SPELL CHECK! I can't live without spell check!... will post photos later...