SPAZY AS EVER!

Wednesday was Johnny's clinic visit. He did VERY well. His ANC was 1,100. Right were it should be. I asked why his ANC counts could drop from 5,500 on Tuesday of last week, down to 600 in less than two days. Cara our PA, told me that the reason his ANC was so high on Tuesday, was that he was getting sick and his white blood cells were pumping up to kill whatever was in him. Just like they should.

I found out that the 6MP and Methotrexate that he missed while he was sick DOES NOT have to be made up. That is awesome! I thought that we would be behind a week in his treatment, which pushes it out more toward Jan/Feb., instead of Dec. Cara and I talked a little about what to expect when he starts the Intensification part of his treatment in Nov/Dec. It sounds pretty rough. We should expect transfusions, red blood cells and platelets, hair loss (he's gonna be crushed), weak, and possibly vomiting. The last two weeks of this round will require him to get one chemo for four days straight -- through his port. I thought that we would have to go to the clinic, but the (kinda) good news is, we don't. Since it will be through his port, either a nurse will come to the house to do it, or I can do it. I have a few months to think about it, but as of now, I'm leaning towards the nurse coming over.

Johnny did his Pantamadine on Wednesday as well. This time he watched his FAVORITE movie, Napoleon Dynamite. I bought the kids "Vote for Pedro" shirts about a month ago, and that is all they wear. Sophie, not as much as the boys, but Johnny, MAN! It's almost like it's the ONLY shirt he has. All of the kids know the movie by heart, even Sohpie. She can dance like Napoleon does at the end of the movie. ANYHOW, Johnny watched the movie while he did his breathing treatment. It made it go so much faster. The nurse fell in love with Johnny. Of course... she has two girls age 7, twins. She would really like a boy, and when she saw Johnny, it made her want one even more.

He has hair now if you haven't already noticed. It kind of reminds me of an Orangutan, thin and crazy all over. But he doesn't see it that way. He has been GELLING his hair. Yes, he wants it spiky in the front, and he is serious about it. We couldn't leave the house today because he was busy doing his hair. Then, because he didn't like the way it looked, wouldn't get out of the car. He hardly wears hats now. The nurse that was giving him the Pantamadine treatment got a kick out of him, when he put his headphones on, and then made sure his hair wasn't messed up. It was really cute.

Kinsmen Lutheran Preschool that Sophie goes to (Johnny went there when he was 4), is going to have a blood drive for Johnny in November. I will keep you posted on the date, probably sometime during the first week of the month.

Thank you to all that donated for the Candlelighters! The walk was cancelled because of the hurricane, but I raised almost 700$! Carol, from the Candlelighters, called today and said that if we are still interested, we are invited to Camp CLIFF, at Camp for All, where the boys went this summer. The only thing is, Sophie isn't old enough to participate. I am going to ask Kristin if she doesn't mind taking Sophie for the weekend. Emma and Sophie love each other, and always have fun together. Hopefully we will all be well enough to go when the time comes.

I also talked to Erin, from Make A Wish. She said that we are going to Oahu! It is so hard to comprehend. It's just so amazing, so incredible. But we won't make the Pipeline Masters (surfing contest) in December, that Johnny wanted to see. After talking to Cara about what lies ahead, I would rather not chance it. I hate to be overseas and have the little guy get sick, or need a transfusion. So to play it safe, we are going to go with Johnny's backup date in February. The good thing about that is, he will be able to get in the water and maybe catch a few waves too. In December, I am not even sure if he will be up for an 8.5 hour plane ride, let alone trying to surf.

We got a call from the TCH PR department today. Dr Dryer, one of our Dr's., is being honored as a Texas Legend, channel 11 and the Chronicle will cover she story. She is an awesome doctor, great bedside manner, kids love her, very energetic. The Chronicle asked Dr. Dryer about what type of props she would like to have during her shoot, and she asked if she could use kids. They said "yes of course..." She chose a little girl, and Johnny to be in the photos with her. We go Tuesday for photos, and I will let you know when it will be on TV and in the paper.

School is going well. I think that if I had to home school the kids, I could. So far, it's been going very well, and I'm having fun with it. Mrs. Hemmen is great, easy going and laid back. I really like her a lot, so does Johnny (and Sophie too). One of Kathleen's NINE kids lives in San Diego, and works for the FBI. A few weeks ago, Kathleen brought him an official FBI hat. It is pretty darn cool. Although he's really not wearing hats right NOW, once he loses his hair again, I know that will be the hat he reaches for -- if Mike doesn't take it over. Mikey could be pretty intimidating with it on, his head shaved, and the cop sun glasses he always wears. I bet he wouldn't even have to flash a badge or anything...

Speaking of Kathleen. MY Kathleen in Dallas is doing well. I know a lot of people are wondering how her treatment is going. She has officially finished all of her chemo. On Wednesday, Oct. 5, she goes in for a masectomy. Just one, not a double. We both thought it would be kind of easy, but after the Dr's discussed her options, -- not so much. We both joked about her getting the Pam Anderson look, but I think she will do something more subtle. I have been meaning to pass along her blog address so here it is: Katstress.blogspot.com. Let me know if it works.

Johnny lost a tooth today. He finally pulled it out. It had been bugging him for quite awhile, and when he bit into his breakfast this morning, it really came loose. He ran over to show me and I told him to just YANK IT! He did. I put it up for safe keeping so Sophie wouldn't lose it, or a dog that might eat it. When I took it out of it's "safe place" I promptly dropped it and lost it under the dishwasher. I tried to get it back, but it was no use. He doesn't know. I will still play "tooth fairy" tonight, and maybe that will be the end of it. Unless Sophie squeals on me, she witnessed the whole thing.

He has also taken over my iPod. He actually takes great care of it, makes sure it's put back and that it is charged. He listens to everything from the Beatles to AC DC to Beck. He asks me questions like: "Is AC DC from back-in-the-day?", same with the Beatles and Led Zepplin. He walks with the iPod and plays air guitar or air drums all day long. As his friends would say, "He's TIGHT!". Yes, 7 year olds say words like "tight"... now I really feel old.

It's strange how things work. Johnny has always been the shy one, and since his diagnoses, he has really come out of his shell. He still has his timid moments, but for the most part he has changed for the better. How could a person not change? Tonight I went to go donate blood and he wanted to tag along. I was surprised. We had always talked about it, but I didn't think he would go through with it. He did. He even talked to the people who worked there. I was too late tonight to do platelets, so I made an appointment for tomorrow at noon. He still wants to come. Now Johnny waves to Drs and nurses, and even talks to them when they ask him questions. He's growing as a person. It's an amazing process!

Some COOL Stuff happening...

I forgot to post some really cool stuff that has been happening with us. Since Johnny has been diagnosed, I am now a volunteer with the Gulf Coast Regional Blood Center. They asked Johnny and I to be in their calendar next year. We went, took pictures and even did some video for commercials. Turns out, they are going to use us for sure in the calendar, and some promotional stuff, and use the video at the blood centers.

Then TCH does an annual fundraiser, and needs families to talk about their story. After the TCH PR department talked to some Doctors in the clinic, the doctors told them about us and our story. The PR department called me the other day to ask if we wanted to participate and of course I said yes. It's something to do with the fundraiser and a local radio station, but it sounds like fun.

Then I entered Johnnys drawings in the Periwinkle Foundation, Making a Mark promotion. We saw it posted in the hallways at the clinic and it will tour the "country" this year. Jan/Feb at the Childrens Museum of the Brazos Valley in College Station, Winter Street Studios in Houston, Mar/Apr Childrens Museum of Virginia, May/Jun international Museum of Art in McAllen, and Jul/Aug Jung Center in Houston.

Johnny also received a package from Colleen at SWA, it is a juggling kit. The title on the box is "More Balls Than Most", which I think is VERY fitting. That is something he can take to the clinic and do, and it won't take up too much room in my bag. Then my Aunt in MI, Aunt Terry, sent him an action figure that he was so excited about, and a Roy Rodgers mug. On the mug it talks about the 12 commandments to be a good cowboy. It is really cute. She also sent a post card from the 70's, of one of my grandfathers friends who caught/shot a polar bear while on an expedition in Alaska. It is so awesome. Really brought back some memories...

Erin, from Make a Wish also called, but that was Tuesday, and well, I just got back from our own little adventure... more on MAW later, when I have more details.

IT LOOKS LIKE CHRISTMAS MORNING

This morning the doctors released us to go home. For the past few days it has been a roller coaster of emotions here. The night that Johnny went into the hospital Mike was on his way home from a 10 day office trip to CA. I knew earlier in the day that Johnny wasn't feeling well because of the way he was acting. Mrs. Hemmen, his tutor, came and they had a great session, he sat there the whole time and accomplished a lot of work. When Mrs. Hemmen commented on how well he did, THAT'S when I knew he was sick. I took his temperature and it was 100.5, and then again an hour later it was 100.8, an hour later it was 101.3. I called the ER at TCH to see what they wanted me to do. Of course I had to bring him in.

Since I thought the storm might be on it's way, I was already making preparations to leave. I anticipated that once we went to TCH, had Johnny checked out, we would be on our way to Dallas to stay with Kathleen. Mike was due in at 11PM, so my dad came with me up to the ER, my mom had Joey and Sophie. When we got to the ER, I walked in and told the person at the desk that my son has ALL, and has a fever. To say that it took about 5 minutes to process us and get us into a room is an understatement. We were whisked away and had a room in mere minutes. THAT, was the last of the fast stuff.

Everyone was glued to the TV and pulling up radar maps on every computer. The storm was headed our way, we just didn't know exactly when or where.

Once we were in our room we waited and waited. Finally the nurse came in and started getting things rolling. She had a hard time accessing Johnny's port. Usually once the needle is in, they flush it with a small amount of saline, and then draw blood. Okay, I am sure that there are VERY competent ER personnel, but I am not sure how often they see ALL patients and access ports. I knew we might have trouble when the nurse didn't know that the cream Emil (it numbs the port site, so they can access it) had to be opened a certain way.

As you all know I watch every move ANYONE makes around Johnny, so when I noticed the nurse was trying to squirt the cream on Johnny's port without opening it correctly, I told her what she needed to do. That may have been a mistake, I might have given her the impression that I do this all the time. When in fact, I WATCH THIS ALL THE TIME. I don't know the first thing about actually doing any of their jobs. Later when she came in to access Johnny's port, she had me help her. I have NEVER had to help a nurse before. I always ask, and they shoot me down real quick. But this time, I had to do the saline push, and then try and get a return (get some blood out). I can't remember what the nurse was doing, but I know she was trying to keep the site sterile, and that is why she had me help her. When I couldn't get a return, she took over and couldn't get a return either. After a few more tries, she decided to get someone else. This guy was experienced. He did it right away. I guess what happens is sometimes the port is "blocked" by debris that has built up around the port site. Usually scar tissue. When they flush the saline in first, it tends to push anything that might be blocking access out of the way. I didn't use much force when I did the flush. But now I can do it if I have too.

Once the port was accessed we had the blood drawn and waited for the results. We got to the ER about 8:30, and didn't get the results until the next day. It was a weird vibe in the ER. Everyone was on pins and needles, including the doctors and nurses. At one point the doctor came in and said from the door, that "yeah, he nutropenic", which means his ANC was under 500, and then left -- No explanation, just "he's neutropenic...". UNDER 500?! It was just at 2,300. yesterday! Later he came back and said that in fact, his ANC was 5,600 -- he just had us mixed up with another ALL patient, and assured me that I wasn't "crazy", for thinking he was neutropenic.

Great! We get to go home, or at least that's what I thought. I told dad to leave about 11:30pm, no sense on waiting for the actual results, we should be home a few hours later. HA! About 3am, I asked for another bed. I was told that we are just waiting on a room, and that it shouldn't be too much longer. Finally I said, "SO, if we are waiting on a room, wouldn't someone have to be released? That might be at least noon, right. Do they release people in the middle of the night?" They didn't answer me. I was able to get a few hours sleep on a bed they pulled in for me. Johnny finally had a room about
11:30am. I thought that once they got us up there, it would be time for us to leave. The doctor's checked out Johnny and said until we know what is going on, he was going to stay. We all thought it was a cold, but you can never be too sure. He had a fever the whole day and it spiked to 101.7 later that night. Which means another 24 hours before we can go.

Last weekend was our 12th year wedding anniversary. Since Mike was out of town, we thought we would celebrate this weekend. I asked our friend Anne if she could babysit, and she said yes. We made plans that if the hurricane hits, she can go with us up to Kathleen's. Because Johnny and I were already at the hospital, Claudia dropped Anne off, with the intent we would be going home later that day. But because of the fever, we ended up staying a few more days than anticipated. After watching the traffic jams going to Dallas, I wasn't in the mood for a drive anyway. I really didn't want to leave the city to begin with. In '83 we had a Cat 3 come through, and we had minimal damage, and it wasn't too bad to begin with. Of course I slept through most of it.... but I wasn't worried with Rita. Although once it went from a 3 to a 5 in a matter of a few hours I was starting to get nervous. Mike was a nervous wreck. Poor guy. I thought I might have to bitch slap him to calm him down. He was (and still is) worried about all of the trees we have around the house. Pine. Pine trees aren't the strongest trees around and have very shallow root systems. He is afraid of a tree coming through the roof or something. Can't say I blame him for that...

While we were in the hospital I met two families that had been evacuated from New Orleans. They couldn't believe what was happening to them again. Johnny also met a boy named Jacob. His sister was just diagnosed with a cancer I had never heard of -- has a really long name, but it was the size of a 12 pound football in her lower abdomen. Jacob is 7 too, so the both of them hit it off great. They raced the halls of the 9th floor all day and night, the whole time we were there. Plus Anne was there to help pass the time too. It was nice to have company. Johnny found some walkie talkies in his backpack of goodies and they were talking on those things and hiding from each other, just playing like it was their own house. It was pretty cute. I'm surprised the batteries still work!

The whole time we were there we were never sure when or if we would get home. We met our doctor from last May when Johnny was diagnosed, Dr. Russell. We hugged when we saw each other. I also saw Dr. Margolin roaming the halls. She was the one who was with us all last month when Johnny couldn't get treatment because of his counts. I felt good about having those guys there, it was comforting. There were so many factors on what would keep us or let us get home. I won't go into the minute by minute, because it changed so much it still makes my head spin. Later that night Mike brought the kids up for a visit. It was good to be a family again. It had been a long time since we were all together.

During the day on Wednesday, all of the families were gathered to have a meeting about what will happen when the storm hits. TCH is one of the safest places in Houston to be during a storm, but the thought of it hitting while we were there was kinda nerve racking. They had plenty of food, water and generator power for up to 7 days. The windows were built to withstand 100+ winds, but we still had a chance that we would have to evacuate. The night of the storm we would have to take our beds and sleep in the halls. If the windows start to break, we would go down to the lower levels or basement. I'm always up for a good adventure! All of the drs. and nurses brought in their "rations", and suitcases and were all ready for the hurricane.

I was glad to hear that we could go home today. Although Johnny's counts went from 5500 to 600 in a matter of days, I just wanted to get home to Mike and the kids. I still feel pretty confident that he has a cold, but just in case, I have a prescription that I will give him if he does spike a fever. Then of course, bring him back in if possible. On our way out of the hospital this morning, I saw Greta Van Susstran from Fox News. She is REALLY tiny!

On our way home the city was like a ghost town. That's why I titled this chapter IT LOOKS LIKE CHRISTMAS MORNING. That's the best way to describe it. The sky was gray, no cars on the roads, it looks like about 6am Christmas day. I had Anne take the last shots of downtown and the Aquarium Ferris Wheel. We all waved bye-bye to it as we passed. We drove by a gas station that obviously still had gas, the line was huge! We never hit any traffic though, that was the good part.

Now we are all hanging out for the hurricane that missed Houston. I guess we will know more in the morning about any damage that the island suffered. But right now, it looks like it might hit LA, and then maybe hover over the state for a few days.

Hunkerd Down in Houston

Julie and I had made plans to load up the family and go to Dallas and stay with Kathleen while Rita does what she will with Houston. But as they say, the best laid plans... One of the kids must have brought home a bug and Johnny spiked a fever on Tuesday. When his fever hits 101 it's a mandatory trip to the hospital for a few days of antibiotics and tests. It's Thursday night as I'm writing this and at this time it looks like he may still be at Texas Children's when the hurricane hits tomorrow night. It's probably one of the safer places in Houston to ride this out so I'm hoping that they keep him through the weekend. Of course Julie is with him along with our friend Anne.

In the meantime I have gone to Galveston to get the tractor and take a few pictures of the house. I spent most of today at the house in Houston trying to pick up anything that might turn into a missle when Rita gets here. I also made a couple of trips to the store for things I think we might need if it's a while before things get back to normal around here. Driving around in Houston was pretty surreal. None of the gas stations have any gas, there's no fast food, and the only place you really see anyone is at the grocery store (which was pretty crowded). Everyone was really nice to each other while standing in lines to buy the last few bottles of water. I hope they're still as polite after the storm comes and goes. We'll see.

The plan as it stands now is to ride this out at home with Joey and Sophie. If they let Johnny go in the morning then he, Julie and Anne will be her, and I think my mom and her friend may stay with us also. It's starting to sound like a hurricane party in the making. It's way too late to try to get out of town, and I feel horrible for all those people who will be stranded on the roads leading out of Houston when Rita hits. I definitely don't want to be one of them.

I'm going to go out on a limb here and say that the power will probably be out for at least a few days. Julie or I will post a blog entry as soon as it's back up to let everyone know we are OK.

I'm sure a lot of people will have a lot of stories when this is over.

Mike

IT'S ALL GOOD

Sorry I haven't written in a while. Mike has been out of town for the past 10 days. I'm just trying to keep my wits about me right now. He will be home late tomorrow night. YIPPE!

I will fill you in on what has been going on since my last post. Joey was in a surfing contest. It was a memorial, for our friend Ashlyn who passed away at school last April from a congenital heart condition. Her parents, Joel and Crissy, along with the Texas Gulf Coast Surfing Association, put together a great contest -- everyone is a winner. It was all in Ashlyn's name, and Joey won 3rd place in his age group. He was awarded a medal and a really cool trophy with Ash's picture. Joey and Mike went down, Johnny, Sophie and I stayed home. I could tell Friday night that Johnny was feeling a little low. He had the Vincristine and the huge amount of chemo pills later that week, so by Friday, it had all really started to kick in. Although I wish we could have gone, I'm glad we stayed. It rained in Galveston the whole day. When you are surfing, the rain doesn't matter, but when you are on the beach watching the surfers, the rain stinks. Besides, Johnny slept the whole day anyway.

Once the boys came home and cleaned up, we headed to Uncle George's 60th Birthday party. It was fun. All of the Romano's were there, including baby Sarah. It's the baby that Sophie is holding, it's amazing how much the girls look alike, especially for being second cousins. We all had a nice visit, -- Johnny and Sophie fell asleep on the way home -- YIPPIE!

On Wednesday, (9/14) it was Johnny's clinic visit. He wasn't due for any treatment, just a complete blood work up. Our appointment was at 12 noon. I knew that we wouldn't be home in time to get Sophie and Joey, so I arranged someone to pick everyone up. Sophie went home with a friend from school that lives in our neighborhood, and Joey and the Stemmlers caught a ride with another friend to the Stemmlers house. I always HATE asking for help. Even if it's for something simple. Anyway, while at our appointment, Cara (the PA who has the benign brain tumor I told you about a few months ago) and I started talking about Johnny's protocol and she noticed that the next few times we go, it's just for blood work. She didn't see any reason why we couldn't go to our pediatrician to do that! WOO HOO! That will save me from finding rides for the kids, a trip to TCH -- not to mention the gas to get there, and parking. It actually only works out to be one week, the last week in September Johnny is scheduled for his Pentamidine (the inhaled antibiotic). BUT it's great news none the less!

Johnny's counts were off the charts. In a good way. His numbers were what a normal healthy kid would have. I was very, very happy. Cara also informed us that we all need flu shots. We have never gotten them before, but this year we all have to. I asked her about Johnny's counts and the 6MP. Mike and I wondered that if I gave him the extra 12 days of 6MP before and it brought his counts down so low, when he is on maintenance (for 3 1/2 years), will they always be that low? Luckily, the answer is no (maybe). Although he will be on 6MP for an extended period of time, his body will hopefully not be quite as sensitive.

Anyway, back to the rest of the day. We were home early. I went to go pick up Sophie, and my friend Cynthia who had Soph, made us dinner! It was awesome. Earlier in the day, another friend of mine just dropped off some roses. I knew it was going to be a great day! And it was.

School work is going remarkable well. The first few weeks I was really concerned, and thought people who home-schooled were crazy. No, I mean REALLY crazy. But now we have a routine, and MOST of the time Johnny is willing to do his work. We are actually ahead of his class right now. I want to be. I know in another month, he won't have the energy to do anything, so the more we can do now, the better. We are actually having fun with it too. Yes, even with Sophie.

I was really anxious about the weekend. Mike was out of town, and I wasn't sure how I could/would handle the kids. At least with Mike we can divide and conquer. I wondered if, and how often, Johnny and Sophie would pick fights with each other... but we ended up having a great weekend. Friday, we stayed up and watched TV, Saturday, we went to pick up some school supplies at a local teacher supply store (Joey bought some Sea Monkeys), went to Toys R Us (kids love that place for some reason...), and picked up a double stroller. Then we went to Mike's Mom's house for dinner. Actually she and Wayne took us out to eat. Johnny wanted to go to Miller's so he could sit at the bar and watch the guys cook. The kids ate great, played all the pinball I could afford and called it a night.

By Sunday, we were all really missing Mikey. Plus it's our 12 year anniversary. The kids were starting to act up, so I threw them in the car and took them to the park. Okay, it was frickin' 100 degrees out, so it was a short trip. Came home, gave the dogs a bath and headed to my mom and dad's house for dinner. I chatted with my Granny and had a nice visit with my family. Dad made "Batten Burgers". Granny tried to tell us about "the storm' in the gulf, but we didn't believe her. We watched the Weather Channel, and still thought "Naaa, it will go to Mexico, or Corpus. They always say it's headed straight for Houston, but it never does..." famous last words maybe?

When we came home I was ready for bed. But the kids obviously, were not. They were not being bad, they wanted to play.
On me. At this point I wasn't in the mood, I was tired, and just wanted to chill. So I yelled at them to go to bed. I felt bad about it, but enjoyed my short lived quiet time. Then, Johnny comes running down to tell me Sophie is on a rampage, just trying to pick fights and acting crazy. Sophie?! Really?! Naaa... then he showed me the bite marks on his back and arms. Rats. This was serious, I couldn't just yell from the couch. I had to move.

The thing I hate about Sophie is that she is so darn cute. I try to get mad at her, she MAKES me mad, but I just can't stay mad at her for very long. The worst part of it, is that she knows it too. Totally takes advantage of the situation. Oh well, whaddya going to do? She turned on the Sophie charm and I melted. I took her in the other room so the boys could go to bed. She fell asleep immediately.

This morning, Joey taps me on my shoulder before the alarm goes off. He says he has a tummy ache and that he is going to throw up. He begs to stay home. I know he's not sick, but let him anyway. I told him "Nothing fun today...", but inside I was happy that I could sleep in just a few minutes longer and not have to take him to school. Turns out, he forgot to do his homework. I learned this about 11am, when we were in the kitchen doing multiplication drills, and he "suddenly" remembers his homework. I tell him how transparent he is, and he just smiles.

Now it's after dinner and everyone is bathed and slowing things down. Mikey will be home late tomorrow night, just in time to batten-down-the-hatches. I asked Kathleen if she would mind us crashing at her place if "Rita" is anything more than a 3. The good thing is that it's her birthday weekend, so technically it would be to help her celebrate. We just have to figure out what to do with Doodles.

That's all that has been going on here. Wednesday, we just go to our peditricians and do the blood thing there. YES! Mikey will be home tomorrow, YES! I'll post again soon! xoxo Jules

YEAH!

It was Sophie's first day of school! I dropped her off at 9:15, and she didn't even look back. Yesterday was a small "Open House", where the parents come in to get the low down on how to drop the kids off, what they do during the day, and what they can and cannot bring/do. The school is a Mother's Day Out program that runs 4 days a week, from 9:15 - 2:30. Just enough time to get a few things done around the house. Plus it's a great place for Sophie to go and play with other friends. She loves it!

After we dropped Sophie off, Johnny and I headed down to the clinic. Finally, at last, today was clinic day. I wasn't as stressed going into today as I have been the past few visits. I knew that Johnny was fine, and we were just waiting for his counts to come up. We had one of our favorite nurses too, Mindi. She is awesome, funny, and fast! She took Johnny's blood, then we waited for the results. This time, instead of bringing the DVD player, I brought school work. I know, chemo AND school work, -- it makes me sound mean. But trust me, the kid screws around all day long, he can do a few workbook pages at the clinic...

The doctor we have had the past month, Dr. Margolin, was in China for a meeting or something. We had Dr. Lee. He was cool. He and Johnny talked skateboarding techniques for a little bit. Dr Margolin had given Dr. Lee the scoop on what we have been going through the past month, so he was up to speed. I didn't have to do any explaining -- which was nice. I was excited to see that Johnny's counts were way up from last week! His ANC was 1,320 -- almost double what he needed to get treatment. His hemoglobin was almost to what a normal person should have too. I don't think it's ever been that high, and platelets were right in the middle of normal. AWESOME!

Johnny was able to get his full dose of Vincristine. Whether he starts walking like Frankenstein again, remains to be seen. I asked Dr. Lee today what he thought, and he said "hopefully not". The last time Johnny had Vincristine, he had a very hard time walking, he was always falling, and fell down the stairs. That was after a month of the stuff. This time it is only on day 1 (today) and then again 28 days later. When you are first diagnosed, you are given a "Road Map". It spells out each drug, and when and how much to take everyday, for all of his treatment (3-4 years).

Tonight, Johnny had to take 12 pills. He did really well. It won't be like this everyday. Only on Wednesdays. For the first five days he will take a steroid (dexamethasone), and then another five days (they call it a "pulse") at the end of this round of chemo. Every Wednesday will be the extra 8 pill of Methotrexate (chemo), during the week he will only have to take the 6MP. I bet none of that made any sense...

When he was taking the 6MP tonight, he asked "is this 6MP." -- he knew just by looking at it. It's one of the bigger ones. The rest are really tiny. He could almost take two at a time, but he doesn't want to. He washes them down with a ice cold coke. It makes it so much easier than trying to hide it in Jell-O. That is a mess. It doesn't make sense to me to take a big giant bite of Jell-O with a pill hiding in it, that you can't chew, and possibly choke on. He wanted me to do the "10, 9, 8, ... blast-off" thing. It makes him go faster. Hey, whatever works...

We were sitting in the den, and as he was looking at pictures, he said that he missed having hair, he can't wait for it to grow back. I don't blame him. I can't remember what he looked like with hair. I see his pictures and think, "wow, who is that kid?". I know it's my Johnny, his eyes give it away. His smile is the same. He is still crazy, but he has these mature moments that just knock me over. I tired to hold him, he wanted to be held, but he had an insatiable need to wiggle, which made the cuddling part really hard. I got to hear him giggle and giggle and giggle though, for no other reason other than just being Johnny.

I have been wondering how much bigger, if any, Sophie is than the boys. Everyone keeps saying, "she's so much bigger than the boys..." I pulled the baby books out. Johnny and I started with Joey's. Every page is filled in, tons of pictures, lots of documentation and detail. I can look to see how much Joey weighed and how tall he was, each month and year. So far, Sophie is smaller than Joey. I don't know about height, but weight, Joey is the biggest.

When I was pregnant with Johnny, and picked out his baby book, I went for a more scaled down version. Something where I didn't have to write so much. Joey's had a lot of blanks to fill in, and I did it... So we open Johnny's book, and he said "hey! where are all the pictures?"... There were a few more blank pages in his book. I didn't even write in his weight/height for his 3rd year. But I didn't tell him that. The only reason I didn't do it, was because his doctor always gave me a sheet that went in a binder from the Dr's office, that had all of his vitals at his yearly check-ups. Come on, it's written somewhere... I didn't want to be redundant... I will have to look for Johnny's binder from the Dr's to see how much he weighed at 3. Of course, Sophie is 3 1/2 now, so it won't be exact.

We finished Johnny's book and he says "let's look at Sophie's!". And I say, "ahh, let's not, not tonight..." -- If you think his book had some blank pages, you should see hers! At least she has a book, and it has her name in it too, so I know it's hers. That might be as far as I got on Sophie's baby book. I still have time, she is still a baby -- I mean, she still sucks her thumb... Anyway, Johnny kept asking to see it and I couldn't get rid of the kid. Finally he gave up. WHEW! I knew if he saw how little I wrote in Sophie's book he would let me live it down.

All of that to say, I'm not exactly sure what the size difference between the kid are at this point. I think that because Sophie is so much more mature, braver, and tougher than the boys, she seems bigger. Man, she's cute!

A pretty uneventful day, but we accomplished a lot. Joey made it to school on time, Sophie STARTED school, and Johnny was able to get chemo. The best part is, they are all asleep now... I will keep you posted about the side effects, if any, Johnny has. Hopefully nothing. Our next appointment is next Wednesday at 12:00, which means I probably won't get home until about FIVE!

Little Man on Wheels

Every cloud has a silver lining, and although we have been stressing over the fact that Johnny has been unable to take chemotherapy, a month off the drugs has had some positives. The first, and most noticeable, plus is that he has trimmed back down to his usual wiry self, and has regained much of his catlike coordination. The second is his energy level is up, along with his inability to sit still for any length of time. Because he's been acting like his old self, Julie and I have been letting him do a few things that either have been off limits while he's getting treatment, or he just hasn't had the energy for. Against doctors strict orders to stay off anything with wheels (I hope he doesn't read the next part), Johnny has been a skateboarding fool for the last week or so.

Johnny used to skate almost every day. He was actually riding his skateboard when he told Julie and me that he had been "wobbly" at school on the day he was diagnosed with Leukemia. The doctor later that day said his red blood count was so low he shouldn't have been able to stand up, much less ride a skateboard. Obviously, when he started treatment he didn't feel like doing anything, and even when he started feeling better the drugs made him clumsy. The steroids make him really heavy around the middle, while some of the chemo makes his legs weak and hard to control. This combination alone ruled out skating because even without the treat of infection he would have been an accident waiting to happen. I know from personal experience the bad things that can happen when your brain still thinks you can do things that your body knows you can't.

As the drugs lost their effect on his body, Johnny started begging to skate. Julie has already written several posts about taking him skating, but it took me a little longer to warm up to the idea that it would be ok. Last week I bought him a new board that was a little smaller than the one he usually rides. He was so excited I agreed to take him to the local skatepark the next morning to let him break it in. We decided to go early so there wouldn't be any other kids. Johnny has always been reluctant to skate in front of the bigger kids. It was so much fun for both of us that we went back several more times. Always in the morning before I had to be at work so that he could have the park to himself. I forgot how much I love to see him skate. He's just a little kid, and he can't do many tricks yet, but he has a lot of style. It's hard to describe, but he just looks "right" when he's on a board. I think that if he sticks with it he will be really, really good as he gets older. It's a lot easier to learn a trick than it is to learn how to look good doing it.

Johnny's older brother, Joey, has been skating as long as Johnny, but he never really had a passion for it. While we were in Galveston over the Labor Day weekend there were probably 10 kids skating with Johnny at the beach house and I was surprised that Joey asked to borrow one of Johnny's boards so he could skate with them. Something must have clicked, because Joey asked if I would take Johnny and him to the skatepark this evening. All the way there I was pretty sure neither of them would want to skate because I was sure the park would be packed with kids. When we got there I was right that there were a ton of older kids, most of whom could skate pretty well, but both Joey and Johnny grabbed their boards and got out there. Joey is still very much a beginner, and sat with me on the sidelines to watch for awhile, but Johnny climbed up on the highest ramp and got in line. I have never seen Johnny skate with other kids, all of whom were much older and larger than him, so I was a little nervous at first. You have to picture all these teenagers who are all flying in every direction trying to show off for each other, and then (in the middle of everything) a very small seven year old on a tiny skateboard.. On his first run he dropped in, got a little air over the box, and got a wheel out of the top of the opposite ramp. I saw several kids look at each other as he rode back up to get in line again. It was really cool to watch the bigger kids take notice of Johnny as he continued to get better on each run. Like I said earlier, he doesn't do many tricks, but his style catches your eye. At first they weren't talking to him, but he was getting a few head nods after each run. Then he pushed it a little too hard. He carried a little extra speed onto a ramp and instead of turning near the top he actually did a backside grind and over-rotated. He was tossed off backwards, fell all the way to the bottom and slammed pretty hard. He jumped up quickly, but I was holding my breath as he rode over to me. He looked like he wanted to cry, but he said he was ok and got back in line. There was one teenager who was much better than everyone else at the park. The other kids were mostly just getting out of his way, and I never saw him speak to anyone, but when Johnny got back to the top of the ramp I saw that kid skate over to him, give him a hand slap and tell him to keep it up. After that he pretty much owned the place.

A little while later Johnny came over to me and said he felt bad that Joey wasn't getting to skate much (he's not at a level where he gets much respect yet). I asked him if he wanted to leave and he said he would go get Joey, but instead of bringing him to leave he started having Joey follow him around the park. It was really cool because everyone was giving Johnny room and that allowed Joey to ride the ramps without getting run over. They skated like until we had to leave. I know Joey hadn't been having a great time until then, but they were both beaming when we got in the truck to leave. All they could talk about on the way home was how much fun they had skating together. Johnny didn't even mention the bigger kids who had started hooting for him. I was really proud.

Hopefully tomorrow Johnny will be able to start the next phase of his treatment. He knows that he will probably not be able to skate again until next year, but I think these last two weeks will serve as incentive for him to get well as quickly as possible. I can't wait!

I'm attaching a few pictures that I took during a couple of the morning sessions. Unfortunately I didn't take the camera last time so I don't have pictures of the crowd. Johnny probably wouldn't have thought it was too cool for his dad to be taking pictures in front of the big kids anyway.

Mike