OKAY! SOMEBODY IS FEELING BETTER...

Today was our "big" office visit. I told Johnny that this visit he won't have to get "stuck" with any needles. Ooops -- my bad. But this time it was just for blood, no IV's. So he was okay with that. Since we knew the rest of the week was going to be busy, Liz took Joey and Sophie to Galveston for the week. They left last night. Joey doesn't mind, but I think Sophie isn't the "gypsy" I thought she was. She seemed a little sad to leave us. Last weekend at my sister's house, she kept saying that she missed her mommy and that she wanted to go home. It could have been because Sophie and Emma are great buddies, then mortal enemies (Sophie got bit!). We will see how everyone does this weekend...

We met with Dr. Mahoney so he could tell us which arm of the treatment Johnny will be on, and to also tie up some loose ends regarding Johnny's portacath surgery tomorrow. The doctor literally puts Johnny's name in the computer and waits for the program to place him -- it is that random. I was hoping for the Standard Treatment. It is the best that is out there now. The other arms of treatment have much more chemo. More chemo doesn't mean less chance of relapse, or better chance for a cure. It does mean more side effects and possible other cancers later in life. I think it is so strange that the drugs they give you to treat your cancer can cause other cancer -- that is just crazy! But anyway, I was hoping for standard and that is what we got! There will be some intensive parts to his treatment, but right now I am enjoying the crazy Johnny he used to be. I'm not ready for the blink-your-eyes-to-answer-me-Johnny yet!

Pretty much from last Friday until now, Johnny has had the giggles -- BAD. He won't stop, not that I want him too. He looks REALLY good too. Although he looks more like a "keg-on-legs", which is so weird to me. I'm not used to his belly being so BIG-- he usually has a six pack -- not a KEG! He has been in the best mood. The kids have been running around playing and fighting together. Just like it was before this whole cancer thing started. And LOTS of laughing! You just look at the kid and he laughs. All day at the clinic he was laughing today, the big belly laugh that is music to a parents' ears!

Except that he had been having some lower back pain -- probably due to the BMA last Friday. I figured with the blood tests today, we would know if there was an infection. I didn't want one -- that would mean a delay in EVERYTHING until it was cleared up! I kept telling Mike the kid is full of crap again, that was causing the pain. He gets this every time. I felt confident in my feelings when we were waiting for the doctor and Johnny kept cutting the cheese and blaming it on us! Then laughing like crazy... nice. Sure enough, that's what it is. He's full of shit again...

After the clinic visit, we came home and had lunch. We are all relaxed, and I am totally pumped about the treatment he will be getting. After lunch, Johnny decides he wants to paint. I love arts and crafts, so of course I pull all the stuff out. After about 1 hour of painting it hits him. He has to go to the bathroom. He's in there, and in there, and in there. I ask if everything is okay, and he says, "yes!". Good, maybe he will feel better. He comes out and I tell him to clean up the paints. He does. He takes his brushes and paints the entire sink. No biggie -- just water colors. Plus he is having a blast. Then he paints and "cleans" and the same time. The kitchen is soaked! I come in and finish up the cleaning. I pass by the bathroom he used earlier and I notice something on the walls and mirror. TOILET PAPER! Soggy toilet paper slapped on the ceiling, walls, and mirror. No wonder he was in there so long! Okay, someone is feeling better! But that 's a good thing ;) I better go clean the bathroom...

I have to take our dog Slater to the vet. He hasn't stopped throwing up for the past 3 days. YUCK! I'm sure he ate a frog or something. Okay, just got back. The vet did all of these tests on him and everything is fine. Except that he keeps throwing up immediately after he eats or drinks. We ruled out everything but "lodged objects". The x-ray came back with some sort of odd mass in his tummy. I think it's a sock. SO Slater and Johnny will both be in surgery together. Well, not together, at the same time -- different hospitals! We think it's a sock because of the shape. Kind of ball like, not to solid, but just the right size to fit a kid's foot! It's not a Hot Wheels shape, or Legos shape. Hopefully just a sock. I'll keep you posted!

THE LUV AIRLINE!

WOW! Talk about LUV! Mike and I always knew what a special place SWA was. Not only as a place to work, but while we were there, we met some of our closest and dearest friends. When we first learned about Johnny, I immediately called Kathleen. We talked and I filled her in on what was happening. She came down to see her little man the next day. Not too surprising, since Kathleen has been such a HUGE part of our lives over the past 10 or so years. But, because Kathleen is going through her own treatment for breast cancer, she had to drive because her immune system was so low. If she flew, she could risk the chance of getting an infection! The fact that she was so sick but still came is the amazing part to me.

She is more than a friend, she is family -- not only to us, but to everyone here in Houston. If we have a party or event in Houston, no matter how big or small, she is always invited, mostly by other family members! And if she can't make it, the first question out of everyone's mouth is "Where is Kathleen?". On her visit, she gave us encouragement and hope and was the comic relief. She also told me about how to create a blog for Johnny. So that is how all of this started. Kathleen had been writing about Johnny on her blog, and a lot of her SWA friends and co-workers found out about Johnny through her blog, and talking to her at work.

One of the first SWA friends to contact us was Cynthia. We were touched. Then a gift came from Colleen. WOW. We were astounded. Next, a phone call from Shari. We couldn't believe how many people contacted us. When Mike called Shari back, she couldn't talk, she was getting on a cruise --out of Galveston. Mike told her to call and stop by on her way home. She did! Shari stopped by with her three beautiful kids and we had such nice visit. She said that there were a few people who would like to do something for Johnny. She asked what he needed or wanted, and we couldn't think of a thing -- except for blood. She said that when she got back to work, she would get everyone together and put together a package.

Later that day ANOTHER package came from Colleen and Gary. Mike and I just couldn't believe it. Yesterday another package came from Shari and friends. This one was huge. Not in size, but in heart. Gift cards for all of the kids, McDonald's gift certificates (Johnny's favorite post procedure food) and an Olive Garden Gift card for the whole family. I couldn't believe it. Cards came from my friends in GOT and from the People Department. When I read the cards I cried. I didn't tell Mike until he came home. I wanted the gifts and cards to have the same impact on him as it did me. He had the same reaction as I did. Shock. Neither one of us could talk. When we finally composed ourselves all we could say was WOW. I read the cards over and over again, and thought about each person that signed it. Then I read them again. Words can't describe how touched we are. I still get choked up NOW, just thinking about it. It makes me want to go back to work at SWA. My heart fills with pride that Mike and I were part of such an amazing and caring Company. It really is the LUV Airline!

Last night my friend Sarita who works in SAN called. We have been friends forever -- ever since we worked together at the Station. Every summer when we go out to visit Mike's dad, I always make a trip to see Sarita and her family. I even brought my cousin Grace with us last summer, and stayed the night with them. We all hit it off great -- they love Gracie too and still talk about her. Last night Sarita called and told me that she is doing a fund raiser for Johnny next week! She has been working on it ever since I told her about his diagnoses in May. Again, I was in shock with her generosity. Unfortunately, Sarita and her family know all too well about cancer. She lost her daughter Isabella to cancer almost four years ago. She got together with some of our friends at the Station and decided to do a fund raiser for us. Again, Mike and I are at a loss of words. I guess the good thing about Johnny's Leukemia is that it really bring people together.

I don't know how to thank everyone for all they have done for us. Mike and I are touched to say the least. Thank you everyone for all of the thoughts and prayers -- it hasn't gone unnoticed!

Yesterday was an awesome day! Actually all weekend has been great. Johnny is up to his usual self -- teasing, playing tricks on people. I never thought I would say this but I don't mind at all. It's good to have the old Johnny back. Mike bought Joey and Johnny new shoes on Sunday. Mike said that Joey was complaining that his toes are at the end of his shoes. I figured he just wanted new ones. I checked Johnny, and thought he could probably use some new shoes too. They went shopping and came back with shoes for everyone. I felt bad when Mike said that Joey was in a size 5 and his new shoes are an 8. Johnny had a size 1 and his new shoes are 3's. Okaaaay... ooops! Oh well. Now they have shoes to carry them through until school starts.

Since Johnny isn't used to shoes that fit, he tripped down the WHOLE flight of stairs. Then hit his head on the marble floor once he landed. Just a little bruise on his head! I called the doctor's, and they just said to keep an eye on him. So far so good. He just has to get used to his shoes.

Mike's mom's department at CononcoPhillips had a blood drive for Johnny today too. 40 people donated in his name and only 35 signed up! We are so grateful for every drop of blood given to Johnny. It really makes a difference! It melts my heart to think of the people who go out of there way to help the little guy.

Thank you everyone!

Shopping for Mom

Even though Joey had spent the night with the Valley's and Sophie was at Julie's sister's house I knew Saturday would be a busy day for Johnny and me. It was Julie's birthday, and Johnny had asked that I take him shopping for a birthday present for his mom. Julie had already told me that her mom was coming over to help clean the house in the morning so I thought that would give us the perfect opportunity to get out. Johnny had a pretty big day on Friday at the clinic, and I wasn't sure how long he would last, so I kept our list of stops to a minimum, but just as we were leaving Julie and her mom gave us a list of things to pick up at the grocery store. We decided to leave that stop till last just in case he starting getting tired.

Our first stop was at the Orek store to pick up some vacume bags (don't worry, not one of Julie's gifts). Johnny wasn't too excited about the stop and decided to stay in the truck and listen to the stereo. I wish I could have stayed with him. Our next stop was a little more exciting. Julie has been talking about needing some new clothes, but things have obviously been a little too busy for her to get out much, so Johnny and I decided the mall would be a great place to start our search for the perfect gift. As soon as he stepped out of the truck I knew Johnny was in a little more pain than he wanted to admit. His last bone marrow asperation was taken from the back of his hip, and I could tell by the way he was standing that his lower back hurt quite a bit. When I asked him if he wanted to go back home he said "no way", but he didn't hesitate on taking me up on my offer of a piggy back. My initial thought was that we would walk around and find something that Julie would like, but as soon as I felt the effect of all the pizza Johnny has been eating I knew I couldn't carry him far. It didn't really matter much because as soon as we walked through the door to Foley's both Johnny and I remembered that we don't like crowds of people, and I think we were both a little overwhelmed with the number of people who were milling about. We both knew we wanted to make this quick (a good plan for our mental health, and my back). We stopped at the first register and bought Julie a gift certificate.

Our first two stops hadn't taken too long, but it was long enough for Johnny to work up an appitite. When I asked what he wanted all I got was "french fries." We were still in the mall parking lot so we decided a stop at Fudruckers sounded like the ticket. As soon as Johnny saw the menu he blurted out "grilled cheese!" So we had another lunch of grilled cheese and fries. It's starting to become the regular meal for our outings. It was really nice eating out, just the two of us. We took our time, talked a little, and made sure no fry escaped uneaten. He declared that Fudrucker's fries are right up there with the ones his mom makes. They really are pretty good.

After lunch we decided that just giving mom a gift certificate was pretty lame, and we needed something to go with it. I gave Johnny a few choices and he decided on flowers. There's a florest between the mall and home so I thought that would be a quick stop. It wasn't for two reasons. The first is that the spot where the florest used to be is now a very large hole. It's not just gone, but there is actually about a four foot deep hole where the building used to be. It kind of makes me wonder if there was something toxic (I do remember seeing some really giant mums there once). Johnny said he was still feeling pretty good, so we decided to drive around until we found a second florest. When we eventually found one that's when we discovered that it really didn't matter that the first had disapeared, they all close at 1pm on Saturdays. Who knew? By this time we were pretty far down FM1960 so we decided to stop at a nusery just to see what they had. No flowers, but before we left Johnny saw a really pretty tropical plant that he thought his mom would really like. A plant and Foley's gift card. I thought we were doing pretty good, but Johnny wanted to get one more thing that he thought his mom would really like, new wheels for her in-line skates. Now we're talking. A quick stop at the shop, and we walked out with the fastest wheels we could find. They were light blue too. Really fast and a pretty color to boot. Julie would love them.

We had decided early on that our last stop would be at Ben & Jerry's for an ice cream cake, but we still had the shopping list Julie and her mom had given us before we left. Johnny said he was still up for a stop at the grocery store, and by this time his back had loosened up a little, so we dashed in. There were only a few items on the list, but a couple were found on one end of the store, and the others were on the oposite end. Johnny made it all on his own, but I could tell it was time to head home. I thought the stop at Ben & Jerry's would be quick, but it took a little while to get Happy Birthday Mom written on the cake in hot fudge, so we decided to have some ice cream while we waited. Not too bad.

By the time we got home it was after 4pm. We were out a lot longer than I had planned, but the time had really flown by. Julie and her mom were finishing up on the house, so Johnny and I stayed out in the garage and installed Julie's new wheels on her skates. After I had changed the first wheel Johnny asked if he could do the next. I had to help him with that one (pulling the bearings takes some practice), but after that he had it down. He pretty much changed out all the rest by himself. It was cool seeing him work so hard on something, and he did a really good job. All I really had to do was check to make sure all the axle bolts were tight when he finished. He seemed really stoked to be doing something mechanical by himself. I couldn't help but get Julie as he was installing the last wheel so she could see how happy he was working on her skates. The look on her face told me that getting her present like this was better than unrapping it later.

The rest of the evening was really fun for the family. Joey came home from the Valley's and the four of us went to Carraba's for a late dinner. Joey and Johnny were cracking each other up the whole time. I haven't seen Johnny laugh like that in a long time. Any other time Julie and I would have probably told them to cool it, but I could tell that just watching them like that was probably the best birthday present Julie could get. When we got home Johnny, Joey, and I set up the cake and her gifts on the kitchen table. When everything was ready we brought Julie in and sang her happy birthday. I think we all missed Sophie (she was still at Aunt Krissy's), but it was nice eating a cake that didn't have finger prints all over the frosting.

Happy Birthday Julie! We love you!

CLINIC DAY

Friday was our clinic day. It went well. Long though. Johnny had the LP (spinal tap) and bone marrow biopsy (BMA), and all went well. He still shows no signs of blasts in his peripheral blood, and only .5% in his marrow. Since a "blast" is an immature white blood cell, ANYONE at any given time can have up to 5% blasts in their marrow --it's considered normal. But with Leukemia, the immature white blood cells never mature into healthy white blood cells and continue to multiply, blocking out the other blood cells needed to survive.

This is something I learned early on, Leukemia is not "staged" like other cancers. On our first night at the hospital, even in the emergency room, I kept asking what stage is he in (I, II, III, or IV). The doctor's kept telling me that there are no stages with Leukemia. So I kept asking what stage is he in different ways. The doctors held strong with their answer. I automatically thought that they were holding back info. Then the more we got into this, I finally realized that, no, there are no stages. Only different types. Cancer is never easy. It doesn't matter what "stage" or type you have. There are so many other variables that go along with it. That yes, at first blush, someone who has Stage I breast cancer, or Pre-B ALL, it might sound good to an outsider, but the fact of the matter is, that person still has cancer. And depending on how any treatment goes, anyone could fight cancer for the rest of their life. Pretty much our doctor has told us that someone will be following Johnny for the rest of his life, no matter how long it is. He will be tested, poked and prodded forever.

Until you go to every doctors meeting/visit, you as an outsider, can't comprehend all that goes into treatment. When people ask how the visit goes, usually I say "fine". Because it did. Nothing earth shattering, but the doctors never say "After this amount of time, you will be cured." So far there isn't a cure for any cancer. BUT, there is great promise and hope. Treatment for ALL is very good, and has a low recurrence rate (about 25% for boys). And each doctor's visit for us is an all day event, so for us to try and remember every detail and go in to it for you would be boring. We ask so many questions, and are bombarded with so much material, I have to let it all soak in before I can even think about what just happened. So when I say the visit was good or fine, it was, nothing earth shattering and we are on track. I'm not hiding anything, or holding it in.

When people ask "How is Johnny doing today" or "Was today a good day?" Everyday is good, even GREAT, when we are not in the hospital. As long as we are home and not at TCH, our day was AWESOME and Johnny is fine. He actually hates it when I take his temperature, because he knows if it's 101 and greater, he has to go in. So each time I take it, he asks what the number is, and I tell him. Then he says "does that mean we get to stay home?!" When I say "YES!", he throws his fist up and yells "YES!!!" too. Everyday is an awesome day. I know that sounds cliche, but it is. Even when we are in the hospital, it's still good as long as Johnny isn't in any pain (chemo makes your bones ache), or feeling too tired, or, just feeling like shit. All side effects from the chemo. These side effects in general make you feel like crap. So we rather be home and have them than at the hospital.

Friday was great. Even though we were at the hospital, Johnny was in great spirits. We had our doctor's visit. Then went down to have everything done. After recovery we go back up to talk more with Dr. Mahoney about what our next "Road Map" will look like. While we are waiting for our Dr., Johnny gets his fill of Chick-Fil-A, finishes his food, comes up for air just long enough to ask for more fries. I run back down to get more. Mike and Johnny are watching a movie -- Ella Enchanted. It reminds me A LOT of The Princess Bride. Almost to the point of ripping it off, but it has it's funny moments, and is a great family movie -- unlike Fast Times or Caddyshack! I don't have to worry about someone's boob's popping out... anyway, I hurry so I don't miss the Dr. It's almost 3:30, and it IS Friday! I get back just in time for him to tell us he is ready to talk.


We leave Johnny in the infusion room, so he can finish his movie and fries and doesn't have to listen to us talk cancer for an hour. He is surrounded by families and nurses and is in good hands, besides we are just down the hall. Dr. Mahoney tells us his results from today. His marrow is .5% blasts and still no blasts in his nervous system. Good news. Then he tells us what the next six to eight months looks like. WOW. I suddenly don't understand what people meant when they said that the first month (Induction) is the hardest. Because looking at what will happen next is down right mind boggling.

Because Johnny in enrolled in a "study" there are four possibilities (Arms) of treatment. There is the standard arm, that if we didn't enroll him in the trial he would get anway (there are no placebos). But because he is enrolled, what happens next is there is a randomization. His number (name) is entered into the computer system and the then he will randomly be put in one of four arms of the treatments. Remember that the "standard" is the best proven treatment available to mankind. Even if he went to MD Anderson, he would still get this "standard", and probably the same trial. The thing with trials is that, the doctors are studying the results of what the doseagages of the other three arms will produce. Each of the other three arms of the trial has a higher or different dose of chemo, and given at different times. Don't think that more chemo is better either. There are so many side effects to his organs with more chemo, that it is scary. Even if he gets the standard arm, the side effects can be terrifying. Long term liver, heart and other major organ damage, even death (always a possibility with anything, but it would be inevitable if we didn't treat him). Yes, he PROBABLY will be fine and go on to lead a normal life, but the side effects and the potential hazards are scary. And these things will be happening over long period of time. Lost of time for things to happen/go wrong. Also, the time period is always up for opinion. Any change in blood numbers or infection, will push out the end date that much farther. So when someone tells me he will be okay and I say "I hope so", I'm not trying to be a pessimist, I'm just taking it a day at a time.

The best thing to tell anyone regardless of what kind or stage of cancer they have is, "I will be there for you." Not, " I KNOW it will be okay, he will be just fine, the cure rate is high, at least they caught it early, he is strong, he is young, he has you guys for parents,..." All anyone needs to hear, is "I AM HERE FOR YOU." Because with cancer there are no guarantees, except that it brings families together and that it lets you know who loves you most.

Our visit with the doctor was about an hour. He described what the four arms of treatment looked like and that depending on Johnny's Minimal Residual disease (MRD) results looks like we will know what his treatment will look like. Boy have a high recurrence rate than girls. But a test is done that will tell us what kind of risk he is. Low, Standard or High (there are many levels involved within each too). Right now, Johnny is in one of the Standard Risk categories far as age, and how many white blood cells he had when he was first diagnosed. Within the Standard Risk category are 3 more (low standard and high), depending on whether he has a higher recurrence rate. They can tell this by looking at the DNA of the white blood cells. Which the results come back for that on Monday or Tuesday.

I go back to the infusion room to check on Johnny. He is sitting there, and tries to get up, but can't. He is in pain. It's from the BMA and LP. I lay him down, and get a nurse. At this point I think that what seemed to be going really well, was starting to go bad. I had the nurse take his temp. -- fine. They checked his back -- fine. The part that killed me was that when I asked if he could walk or if he wanted a wheelchair, he opted for the chair. ouch. He ALWAYS says he can walk. This is just part of our new normal good day.... Then I started to feel scared about all of the treatments and what might happen. But as quickly as I start to feel scared, I start to think "okay. How are we going to do this." No time to think about anything else but logistics. We put heating pads and Johnny's back and head home!

Pretty much all of this and we still don't know what the next steps are FOR SURE. Mike are I are torn. Do we want him to get the standard treatment with minimal side effects, or more chemo, and more side effects? All have an excellent remission rate, we just want the best for our little guy, with the least amount of impact on him!

VOLUNTEERS

This is a side note to anyone who volunteers.

Whether it is time, or giving blood, THANK YOU SO MUCH! You don't know how important you are, and how many people you are helping. Each time that Johnny gets blood, I look at the bag and wonder who the person is that has done such a giving selfless act. My sister's office (BMC Software) just did a blood drive in Johnny's honor today. It is so touching that complete strangers will do something that is so caring. Without donors, Johnny would not be here today. With each bag of blood that Johnny receives, I wonder about the story that goes along with it. What makes a person decide to do such a thing? I wonder if it was a man or woman. If there was a situation in their life that made them want to do it on a regular basis. Then I just thank God that there are such people. I never gave blood before,but now I plan on doing it the rest of my life!

When I used to work at SWA, we always did things for the Ronald McDonald House. Usually dinners. At least once a month we would make a huge dinner and take it to the local house. Or do Thanksgiving or Christmas. It was fun for us. We could leave work early! Then when Mike started at Starbucks, the local store in G-town did the same. Every time I went and helped out, I wondered if it made a difference. Usually, you would never see a single person. We were there from about 3 PM until 6 or 7 PM. Still, we wouldn't see anyone. You wonder, where is everyone? I know the house is full. Don't they want a hot meal?

Now I know. I know EVERYTHING. That yes, we are grateful. It doesn't matter if it's the full meal or if someone stocked the TOP RAMAN NOODLES, we are so thankful. And we notice when it's not there. Every time I go to the kitchen on the 9th floor of TCH, or the Kitchen next to the clinic (all run by Ronald Mc Donald volunteers), I hug them. They don't know me, but I thank them for being there, and spending time to help others. I let them know they are special. I ask "why here?", and find out that, somehow they were touched by cancer and wanted to give back to the people who helped them. Some people had breast cancer, some prostate, some had friends with cancer. Everyone has a special story that brought them here. I'm just glad they are here.

And the reason you don't see a lot of the families, is because they are afraid to leave their loved one. It's not until late in the night when they need a cup of coffee to keep them going, or warm them up, would you see them in the kitchen. Believe me, the kitchen is full then. And they are so thankful that someone stocked the muffins or crackers or raman noodles! So thank you so much for putting your time in to help someone else. YOU MAKE A DIFFERENCE! If you ever wondered about making a difference in someone's life, volunteering is the thing! Once this is over, you will see me doing my share too.

ANOTHER AWESOME DAY!

Mike calls this morning to tell me there is an ozone warning. Even if you are healthy, don't go outside. Bummer! We had planned to go to the pool again. But we can wait until dad comes home. We decide to go see Herbie Fully Loaded instead. We get some pizza for lunch (are you starting to see a trend?), and head over to the movies. As we are walking, Johnny takes off his hat and asks me to hold it for him. WOW! Of course~! I think he is comfortable with the way he looks now. He never put it back on the rest of the day!

We get home, and Johnny wants a snack. Pizza. I cook him a couple mini ones and tell him dinner will be in a few hours. After he eats, he wants his cousin Grace to come over. The kids LOVE grace. But I also said last night that maybe we can pick up Grace early and all go to the pool...

We head over to Honey Buns to get our Gracie (that's what Sophie calls her), and I see that Granny is there. She has been beside herself for over a month now. Poor thing. On Saturday at my sister's house I had to leave the room because all Granny did was cry and talk about Johnny. Luckily I had Sophie and Johnny in the car. We all go in. Granny lights up! She is so happy to see Johnny, she crys. I'm sure it's hard for her too. The last time she saw him he was running around and looked like himself. Now, he is still running around, but he looks so different. She holds him. And we all talk about him like he's not there. He HATES being the center of attention. He wants to leave -- NOW. We hug and kiss everyone and say our goodbyes. Granny is happy now.

We come home and order dinner --what else but PIZZA. Johnny is on cloud nine. We eat, head up to the pool, and sit down with some friends. All the kids swim together and Mike and I enjoy seeing Johnny act like a kid. He still can't jump off the high dive because he doesn't have the strength/energy to get up the stairs. I asked him if he wants help up, but he says no. At home, he climbs our stairs one at a time and uses both hands to pull himself up the railing.

Our friends Marilyn and David Bell have two girls. One is Kate, she is going in 6th grade and Caroline is in Johnny's class. They are great pals. Marilyn asked to take Joey and Soph up to the pool tonight. But then Johnny felt so good we all went! The Bell's usually spend an evening at the pool swimming and then have pizza delivered poolside. So that is what they did tonight. Of course Johnny had another couple slices! About 8:30 he looks sleepy, so we head home. We have a big day tomorrow.

CLINIC! Another biopsy, spinal tap, and of course more vincristine. This will determine whether he will need two more weeks of induction, or if he will go on to six months of consolidation -- the next phase of treatment. We will know more July 1st! I wonder if he will want to go to the pool this weekend? Usually Friday - Monday he is on his ass. He wakes up wanting to do something and is talking about all the stuff he wants to do that day (of course he is still in bed). We say okay -- let's do it. I get dressed and the next thing I know, he asleep. For about the next 5-6 hours. So we will see!

Johnny

CIMG0598
Originally uploaded by jromano1.

THINGS ARE GETTING BACK TO NORMAL

Today is Tuesday -- and a great day it is. We ALL went to the pool today! I called the nurses to DOUBLE check that it is okay Johnny goes, and the answer is yes! The nurses probably see my name pop up on caller ID and they fight over who has to answer it. I call almost daily. I would think that most parents would do the same, but maybe I am hyper-protective about Johnny. I actually had two questions. One was his temperature. I take it throughout the ay to make sure he isn't running one. Sometimes it's 97.0 and sometimes it 99.5. I'm sure if I took Joey's or Sophie's it would be the same. But why would I do that?

Robin assures me that it's normal for a person temp to rise and fall during the day, but we have to go in if it's 101 and higher. I knew that. I was just making sure. It reminds me of that commercial, I can't remember what it's actually for, but he has 24/7 customer service on some product he just purchased. And it shows the guy laying in bed in the middle of the night talking to a customer service person, just to make sure he can. That's me. I ask her if it's okay if we go to the pool. Yes! Then I ask if Johnny can go underwater -- Yes! cool... HEY -- I just wanted to make really sure! Stop laughing at me.

So we go to the pool and have a total blast. At first Johnny wanted to know if he could wear one of Mike's surfing hats. It has a chin strap so it won't fall off. I say sure and give him one. Up until now, no one other than us has seen him without a hat. We walk in the pool, and he goes to the edge. He comes back and asks if it's okay to take off the hat. I say "SURE!". He takes it off and I lather him up with sun screen. He says "dad says I need sun on my head". But we don't want to get burned -- that would hurt! He never thinks about the hat again! I'm so happy.

None of the kids notice any difference. I get the looks from the moms though. The pitty smiles. I know, I've given them. You can tell he's a Leukemia kid now. Bald, and lots of cheeks and tummy. But other than that, he is normal. He goes down the slide, jumps in the pool, swims laps and can't wait for the 10 minute "Adult Swim" to be over. He's my Johnny. I do notice that he isn't the FULL STEAM AHEAD Johnny, but he is still my little Johnny. We stay for 2 1/2 hours, then he wants to go home to eat!

We go home, and I make him his second round of pizza's for the day. Mike's mom is coming over and she is going to pick up Chinese food. One of the kids favorites! When mom shows up Johnny asks if we can go out to eat. WOW! Two outings in one day -- OKAY! So we go out to eat. But what he really wants to do is go back to the pool with DAD! So after a big dinner, we all head back to the pool and close the place down. A great day for all of us!

Our First Trip to the Emergency Room

Every time we meet a doctor or a nurse, they always said, "this won't be the last visit here". I love to beat the odds, and be the first family that DOESN'T have to come back for infection. Since we have been home from the hospital, we have been really good about hand washing and using the antibacterial foam. We don't think twice about telling someone they can't come by -- even if it's my niece Emma.

When we came home from the Hospital, Johnny has slept between Mike and me. We just won't let him out of our sight. At about 2:00AM, Johnny started to throw up. I called TCH and we were told to come in, I called my mom and she came right over. We were at TCH by 3:30. They took blood, ran his numbers and came back to us and said that he was fine. No infection! We were so happy! We were also scheduled for a transfusion in about two hours at the clinic. Johnny's counts were so low on Friday that they automatically scheduled him for transfusions on the following Tuesday and Friday. Then the ER doctor looked at his numbers again and saw that his numbers were up enough that he didn't need a transfusion! Good News AGAIN! Awesome. We are home by 8:00AM, mom brought Grace over to watch Sophie and Joey, so we laid around all day long!

Mike thinks he was sick from the pound of bacon for breakfast and the pasta and butter for dinner. The doctor's think it's just the treatment catching up with him. I side with the professionals! So far, he hasn't had an severe adverse reactions to his treatments, just really tired. And that could be because of his counts more than anything.

Mom visits and Mike goes to Galveston

Mike and the kids went down to Galveston for the weekend. My mom came over to help clean the house. Johnny is still pretty week from yesterday, so he just follows us from room to room and sleeps. Before we actually start cleaning, mom and I get our first brisket ready to cook for dinner. We use a couple of recipes, and hope for the best.

Dad and Craig went to Galveston for the day too. Dad wanted to clean the carpets and Craig was helping. You can see our beach house from their front porch, so they watch everyone come and go from our house all day long. About 4:00, Kris and Emma come over. Mom and I are exhausted. Dad and Craig get to the house about 5:30. We all have dinner and discuss our days. Everyone is pooped, but it was a productive day none the less.

Mike calls about 7:00PM and says that they will spend the night in Galveston. I think "GREAT! the house will stay clean for a few more hours!". But I miss them anyway.

Johnny and I try to watch what I though were "classic" movies. Fast Times at Ridgemont High and Caddyshack. I know they are both rated "R", but that was like over 20 years ago. Most of the stuff they considered rated "R" then is on TV now. I put in Fast Times first, I figured he would get a kick out of Spacolli. In about 10 minutes I find out that it truly is a rated "R" movie, and that there is only about 2 minutes of Spacolli.

I take out Fast Times and put in Caddyshack. I thought he would get a kick out of Bill Murray and the gopher, and the Baby Ruth scene. Most of the comedy is over his head, a few 'cuss words, and I skip the two sex scenes. He didn't seem that impressed, even when Bill Murray ate the Baby Ruth bar, or when Spalding picked his nose. Kids love the low-brow, gross out humor usually! I guess we will stick to Disney for the time being.

FATHER's DAY WEEKEND

A pretty quiet weekend for everyone. I take Sophie and Joey to my sister's house on Saturday to celebrate early with my family. I play with the kids for a short while, then decide to take a nap. This is my first official "outing" since May. It feels strange. I mean, I've run to Randalls and Target, but the longest I have been away from Johnny is about 1 1/2 hours. I miss him, but it's nice to get out for a bit. We eat a great dinner -- I never knew how much I would appreciate a home cooked meal -- and head home.

Sunday morning we all let Mike sleep in. But finally about 10:30 he decides to get up. We give him his Father's Day cards and gift, and we are all thankful to be together. I think Mike is under the impression that Father's Day is the one day a year he has to do something around the house, so he goes to the garage to clean it up. Don't tell him that he is supposed to relax and celebrate being a great Dad...

Mom comes over and brings dinner. Filets and potatoes. Nothing like grilling on Father's Day! We eat until we can't move. Earlier in the weekend Mike promised Joey and Sophie that he would take them to the pool. Johnny BEGS to go, so we all decide to go swimming. Johnny is STOKED! His first visit out of the house that doesn't involve doctors! He is smiling from ear to ear and dancing all over the place. We load up the van, drive to the clubhouse, only to find out it's closed! Bummer!! So we do the next best thing, go to the gas station and fill up the van... and get it washed. Yippe! Well, it's a start I guess.

Day 22, It's CLINIC DAY

Today is Friday, day 22 of treatment. In some respects it has flown by, and in other ways it seems like our life has always been this way. Today is just a shot of vincristine, and possibly a transfusion. Mike decides to go to Galveston and cut the grass and I take Johnny to the clinic.

Grace spent the night last night so Sophie is taken care of, and Joey spent the night at his cousin Daniel's house. Even though Daniel is a Senior in High School, he and Joey get along so well. They have a lot in common. They both love every video game on the planet! Both Grace and Daniel are great kids -- Grace is awesome. She can come over at the drop of the hat. I really enjoy just having her around, babysitting or not.

Each clinic visit I have a ton of stuff to bring. It's freezing, so I bring a small blanket and pillow, games, and the portable DVD player. I also have a big 3 ring binder that I keep all of Johnny's records in. That way I can easily track of all of his test results and anything the doctors give us. Every Friday I TRY to bring less, but in case we are there all day, I want to be able to do something other than watch TV.

This morning Cara comes in and we have a nice long talk, she answers all of my questions. Then I apologize for last week if I seemed a little curt. She says she doesn't remember, but I'm sure if what Mike says is true about the way I acted, she remembers. Johnny's numbers look great, still WAY below where they should be, but he doesn't need a transfusion! YES!

I ask Cara about what all the abbreviations and numbers mean on the test results. I know what the really important numbers mean, but I want to know what all the other stuff is. She was very sweet about the whole thing. Because looking back, she could have easily said, "you don't need to worry about those, just keep your eye on these numbers". But she didn't. She took her time and went through each number, and made sure that I understood what it meant and how it relates to the other numbers. Please don't ask me to explain it to you! It is incredible how doctors and nurses treat these diseases. They look at your DNA and all sorts of stuff to see how you will respond. Crazy!

Then Cara tells me that if she were in my shoes she would want to know every detail too. Actually she was diagnosed with a brain tumor two years ago! Talk about crazy... so she knows all too well about being scared and asking questions. I am so grateful that she spends the time with me to answer my silly questions. I just figure that if the number is important enough for the doctors to know, then I should too.

We go to the area where Johnny get his treatment. He lays down on a couch. We only wait about 15-20 minutes and the nurses come and give him his shot. They are great, no problems. And we are home by 12:30! I ask Johnny if on the way home he doesn't mind stopping to get Father's Day gifts. He says "No". As we get closer to home, I notice the effects of the chemo are kicking in. Still no vomiting, but it wears him out, and he just doesn't feel good. I take him home and quickly run out to get the gifts. There is a Barnes and Noble next door so I pop in to look for books about ALL.

Nothing! Well, almost nothing. I was able to find one book titled "100 Questions about Leukemia". But it mostly deals with adult Leukemias which is so bazaar to me. Most Leukemia is childhood, the adult type is rare. I buy it anyway. It turns out it is actually pretty informative. I still want to know more about Childhood Leukemia, but it will do. I guess because it changes so frequently, a book wouldn't stay current. Plus, Johnny is in a brand new study, it would be different anyway. I guess what I am looking for is a book like "What to Expect When Your Expecting", the book your doctor gives you when your pregnant. Just a brief month by month of what to expect. "Is throwing up at 2AM normal?" I could look it up! A reference book of some sort...

It's Official -- We Shaved Johnny's Hair Off

Last week in anticipation of Johnny loosing his hair, Mike shaved his head. BALD. Not a #1, but BALD -- as in Mr. Clean bald. A few days later at Johnny's next clinic visit, the nurse told him that some kids don't loose their hair. I laughed so hard! But Mike likes his hair short. So he will probably keep it.

Today Jon was in a great mood, almost my little Johnny hoo-hoo again. Happy, singing, jumping around (kinda). Each day I do a "test" on Johnny's hair to see if it has started falling out. Nothing. Until today. Every time I ran my hands through his hair, a pretty good amount was falling out. Then, Johnny started to see what he could get out! When I asked him in the hospital what he was going to do, shave it or let it fall out, he NEVER answered me. Just ignored my questions. He loves his hair. I mean really loves it. I knew it would be hard for him. But today, he didn't seem to have a problem -- he said "Let's Do it!". I got the razor, Mike, Joey and the camera. We went outside and Johnny sat down on a stool. Mike started to shave his little head.

At first we were all joking around. Mike gave him the "Flock Of Seagulls" haircut -- shaved on one side, long on the other. Then a Mohawk. Suddenly no one was laughing. Especially Johnny. He was real quiet, and I got all choked up. Mike and I try not to get emotional in front of the kids. Johnny's head is down and I am just staring at my baby. It's hard for me too. Now he is really sick. Cancer sick. Suddenly, his cheeks become more pronounced as with his belly. His arms and legs are like twigs. His joints are bigger than the rest of his limbs. He looks pale. It was like Mike shaved off the "healthy" part of him or something. It's hard to explain...

Mike finishes up and I take Johnny's picture. WOW. I'm sad. Mike is sad. Johnny is sad. But no of us show it. We all have fake grins and say it looks good. I hand Johnny the mirror. He looks at himself in utter shock. I think he wants to cry, but he stays strong. He gets his hat collection and takes them to the mirror. He tries them all on and quickly finds out that baseball caps don't cut it -- they don't cover enough of his head. Next he goes to his sock hats, and they go all the way down to his hair line on the back of his neck. "Perfect", he says no one will know. He takes his hat off again and looks at himself for a long time. His eyes are as big a saucers, just staring. I think it has hit him too, that he is seriously ill. Hard stuff to take when you're only seven. But the little guy is strong.

The worst thing you can do to a cancer patient is say they look good with their heads shaved. Because they don't. I know that everyone is trying to be nice, or trying to make conversation, but telling them it looks good is like saying "this cancer thing looks good on you..." Or "it's a good summer time haircut". I know it might be extreme, and I am his mother, and all hyper sensitive to everything. But let's face it. No one CHOOSES this look, they don't do it because it's not attractive. Also, I think most cancer patients don't want to hear that it will grow back thicker, or a different color or texture.

That's just me. I could be wrong, and I don't want to hurt anyone's feelings. What should you say? I don't know, I wish I had the answer, but compassion goes a long way...

Dinner at Nana's YUM! the A/C breaks...

The one good thing about Johnny being sick is that everyone feeds us and I don't have to cook!!! Mike is supposed to be back about 1:00PM with the kids. I will take Sophie and Joey to Nana's and bring the guys back leftovers. About 10:00AM, I notice that the house feels unusually warm. I quickly forget about though. Dad drops by with some bacon for Johnny.

When he gets a craving, it is CRAZY! He needs it now. Whatever it is, he has to have it. I think it is the steroids that make him that way. All day yesterday he had cravings. French Fries, pizza, salami. It's weird. But I try and fullfill them for him -- I know what it's like to get insatiable cravings! So in between cleaning the house mom and I are short order cooks. Then out of the blue, he wants bacon. We were on a roll and hoped that he might forget about it. At dinner, he was already planning the next day's meals. Bacon was on the list. So Pops comes by with his order. I thought that was so sweet.

I make his bacon, and he eats all of it, in one sitting. I love to hear him say "that is the best bacon you ever made me!". It is so cute. The not so cute thing is that he uses my BED SHEETS for a napkin! YUCK! But he is sick, so I let it slide. He doesn't have enough energy to go up and down the stairs. He eats most meals in my bed. I now put towels down first and give him plenty of napkins too.

It's 11:00AM and it is 87 degrees in the house. I called our A/C guy, he is super nice and is all too familiar with our unit. I tell him what the problem is and he says he has 3 other emergency calls ahead of me. I decide to play the sympathy card. I tell him of our situation and he says he will see what he can do. Mike comes home to a hot house, and I leave with Joey and Sophie to go to Nana's.

Jason and Rene are there when we arrive. Nana is disappointed that Mike and Johnny can't come. I explain that Johnny is still pretty weak along with his immune system. But the big thing is Mike has to wait for the A/C guy. CJ shows up and we all sit down to pasta. The phone rings, and it's Mike's dad. They just had another earthquake -- but all is well! Everyone talks to him and he promises that he will make it here for a visit this summer. Then the phone rings again and it's Mike. He and Johnny were at the gate! The A/C guy came and went, so Mike took Johnny for a ride. But first they had to make a stop at SurfHouse to say hi and look at some boards.

Mike gets his fill of Nana's cuisine and Johnny chows down on the garlic bread. He is a carb-a-holic! Within about 20 minutes, Johnny is ready to go and the boys take off for home. Our nice cool home! I stick around and chat with Nana until about 7:30 or so. I think we are all asleep by 10:30 -- a new record for us~!

Day 15

It's Friday again and we are off to the clinic. Our appointments are always early -- for me 7:45 is the crack of dawn! Today will be relatively short compared to the last two Friday's. Today Johnny only gets his vincristine and a bone marrow biopsy. We should be home fairly early!

TCH is an incredible facility. It is completely geared for kids, hence the name Texas CHILDREN'S! It is very colorful, arts and crafts tables are everywhere, video games, movies and the Cartoon Network are on every TV. So when the doctor's said the word "clinic" to me during our hospital visit, I had something entirely different in mind. I pictured a clinic with cold tile floors, a bunch of out-of-date chairs lined up, and pictures from the 70's on the walls. Not at all what TCH really looks like. I hope that no one else has to experience what we have, but if you do, TCH is the place for kids!

When you check in you are given a pager (like you get at a chain restaurant when you wait for a table). Once we are paged, we go to "Band-Aide Junction", or what adults would call the "lab". There is a huge fish tank, with all sorts of beautiful tropical fish. Once Johnny has his IV put in, we go back to the Leukemia "Pod". Each blood disorder has it's own "Pod", where the doctor's come and see you. If you have Sickle Cell Anemia, you are in the Pink Pod, Leukemia is red, there is also a blue and green pod for two other diseases. And then we wait. For about an hour. The reason it takes so long is, with Johnny's type of Leukemia, and the blood that is drawn from Band-Aid Junction, a technician has to count each of this cells -- by hand. Each red, white and platelet cell. It won't always have to be this way though. It's just that his counts are so low that a machine cannot correctly read them.

This visit we meet Cara our PA. We chat and discuss Johnny's counts. Then I get the feeling that this IS the visit. I thought Cara would come in, talk and then the doctor would come in. So I asked her if we were going to see the doctor today, and she said no. I guess my reaction of "Oh!" was a little rude. Because after that Cara told us all about her background, PHD, and from that point on, I couldn't understand a single word she said to us. I think she was trying to reassure us that she knew what she was doing. I didn't doubt that, I just thought at each visit we would see Dr. Mahoney, kinda like when we go for check-ups at the pediatrician's office. But I guess that when we have an appointment that isn't earth shattering, we will see Cara. Today is just a bone marrow biopsy.

Mike later told me how rude I was to Cara. I truly didn't mean it. I just have a really bad habit or reacting as I feel. I'm not a good one to hide it. If I try to hide it, I am way to transparent!

Because Johnny's counts are low, he needs a transfusion. He needs whole blood now. His red blood cell are 7, and to do procedures the anesthesiologist wants them to be at least 9. For healthy kids it should be between 11-14. His white blood cells are at 50. Normal should be between 1000-1,500, and his platelets are 56, and should be 150-450. Johnny is low on everything. Cara checks to see if the anesthesiologist will do the procedure with the IV "hanging". Meaning the transfusion is almost done, but it is still hanging. He will! Great!

We go down to PACU (Post Anesthetic Care Unit) and wait for our turn. It's almost 1:00 and we are all starving. Johnny is quiet the whole time. He never complains, but never talks either. All he says is that he can't wait for his Mighty Kids Meal. As we sit and wait our turn, I look around the room. Toys are scattered EVERYWHERE. Wagons, Green Machines (yes, they still make those things), trikes, TV's with video games -- the works. But what I notice the most are the families. Some are lucky, or at least I think they are. The parents all have worried looks on their faces because their child is about to go into surgery, but the kids are older, and appear to have some sort of minor sports injury. I assume that because they are boys, they aren't pulling an IV pole, they appear healthy, and the doctors don't seem to be too worried about it. The kid doesn't seem too worried either.

Then I start to feel like the lucky one. This is when I really like to come here and think that Leukemia isn't that bad. As my eye scans the room I see babies. Tiny, tiny infants. Little tiny infants, so small, you can't even see their little noses over the blankets they are swaddled in. Most have tubes up their noses, and are attached to IV's. All are surrounded by family. Lots, and lots of family, holdings rosaries and stuff. Yikes. This is when I feel like it will be okay and I am strong.

It's our turn and we all go in. I feel better this time because Mike is with me. Johnny is always dressed in what I would call skater clothes. Jeans, Vans, long sleeve shirt under a short sleeve shirt and a sock hat, or skull cap (to me they look like the knitted hats I used to wear up north, except his hats don't have the big pink ball on top). Everyone comments on his clothes and hair. He still has lots and lots of hair. Long hair. He likes it that way and besides he looks really cute with long hair. His hair is so long and pretty, that when people see him they say things like "she". I play dumb and ask "who?" and then they have to look again, or look for his name somewhere. I think it because he is such pretty boy. Joey is handsome, and Johnny is pretty. Like Ashton Kutcher pretty. And besides, his hair isn't that long. When he wears a hat, it MAYBE goes down to the middle of his neck.

Then somehow the conversation in the procedure room turns to the Doodles. Mike is talking to all of the nurses and doctors about our dogs. About surfing, about our trips to CA and Hawaii. I can barely think about the next minute, and these guys are just having a good ol' time getting to know each other. That is how Mike and I are different. He is really good at chit-chating with anyone. Not me. Especially right now. They try and bring me into the conversation, but all I can think about or want to talk about is Johnny. I try my best, but it is half hearted. Then it's time for Johnny to go under. They shoot this thick milky stuff into his IV and he fights it by trying to keep his eyes open. Instead of going out by the count of three, his heart races and we count all the way to 8. I know the little guy is so scared even though he has done this 3 times before, he is scared. Tears fill my eyes again because I don't want him to be scared. We leave the room and get a bite to eat.

I see a mom that we met when we were at the hospital in May. I can't remember her name, but her daughter is a little cutie pie. I remember feeling so sorry for the parents. Not because they are in the hospital (yeah, that sucks too), but because all they did was run up and down the halls chasing the baby with her IV pole. I wish I could remember the baby's name! But she is 18 months old and FULL of energy. After watching her laughing as her parents chased down the halls, I stopped to meet them one day. To find out why they are here.

This little angels story is like all the other child on the 9th floor. She was sick, but her mom didn't know why. Her mom kept taking her to the doctor's, but they couldn't find anything wrong. Her fever would spike, she couldn't eat, she had night sweats, but nothing too serious. Then by chance she spiked a fever at her pediatrician's office and they sent her to the emergency room. Upon arrival, the staff did the routine x-ray. That's when they found the giant tumor that was in her abdomen, and wrapped around her spine, and pushing her vena cava to the side.

When I saw her today, she was scared. All of her family was there for support, but today was their big day, surgery to remove the tumor. Chemo over the past month had shrunk the cancer down small enough for the doctors to remove it. They took the baby in at 11:30 AM and told her that it might be about 6:30 or 7 before they are finished! This is when Leukemia doesn't seem so bad. I hope I get to see her again soon to find out how everything went.

We are called back to recovery and Johnny is waiting for us. He isn't awake yet. But I stay by his side until he opens his eyes. Mike comes in and says that Joel, our friend who works at MD Anderson, is going to stop by to say hi. Johnny wakes up about 3:30 and is ready for his Mighty Kids Meal. We are ready to go. Just like last week, someone from PACU put Johnny in a wheelchair and escorted us to McDonald's without us even asking. Once we get to Mickey-D's I tell them that we can take it from here. I will return the chair to the PACU when we are done. They are so nice at TCH!

We order, and sit and talk. Joel looks over Johnny's lab results from the past month and notes how badly he is getting "slammed". Meaning his counts are so low. It is just amazing to me that the kid can walk around, since his blood is a fraction of where it should be. Johnny finishes his meal and we go home. Liz has the kids at home. We call and tell her we are on our way.

We get home and dinner is waiting for us! Liz gives us the run down of the days events. Joey is at a friends house swimming and my mom took Sophie to a birthday party. Mike is going to G-town tomorrow with the kids, go to the beach, and let off some steam. I will stay home with J-Grom. We eat dinner when everyone gets home. Play a few board games and then call it a night!

A Day on the Island by: Mike

It's Tuesday morning and Johnny has been out of the hospital for almost a week, but he hasn't been out much at all. I was starting to get a little stir crazy too so I asked if he was up for a drive. He immediately lit up and asked if we could go to Galveston. At first I wasn't sure if it was a great idea, but he seemed to be feeling better so I thought we would give it a try. I needed to take one of my spare bikes down to Marci so I thought if we made it all the way to the island we could take care of some errands. As we left the house Johnny was quiet, but seemed very interested in everything going on outside. It was really sunny out so I made him wear a pair of dark glasses. Because I couldn't see his eyes I couldn't say exactly when he fell asleep. I don't think it was too long after we hit the freeway.

When we got to the island our first stop was Ohana Surfshop to see the owner, Booger. Booger's shop is on the seawall, and as soon as we pulled up to park Johnny popped up. He jumped out of the truck as quickly as he could and took a big wiff. The first words out of his mouth were "Man, I miss that smell." I think he was talking about the water, but I still thought the comment was a little funny because all I could smell were the mounds of rotting seaweed on the beach (it smells like fish, only worse). Booger and I have been talking for a while about the possibility of moving the skateboard ramp from our backyard to his shop in Galveston. That's still up in the air, but it was really nice catching up. He had already heard about Johnny's illness, and had a lot of questions about treatment and what he can and can't do. He gave Johnny some gum and stickers, and a really nice girl named Andi (very good surfer by the way) who works for Booger helped Johnny pick out a new necklace and a surf movie.

It was getting time for lunch so we had Marci meet us up at the shop so we could go together. I told Johnny we could go anywhere he wanted to eat on the island. I was sure he would want a pizza from Mario's, but he shocked me when he asked for french fries from The Spot. Booger overheard this and told Johnny to make sure he ordered them extra crispy. He said otherwise they come out too soft and mushy. Johnny's answer was "Hmmm." I think he likes his fries mushy. We had a really nice lunch at The Spot, and Johnny did a good job on his grilled cheese sandwich (which has the thickest bread I've ever seen), and his mushy fries. He also tried one of my onion rings, but seemed horrified when he discovered there was an onion in it.

After lunch we drove back to the shop to pick up Marci's car. I asked Johnny if he wanted to take a walk to the Flagship to watch the kids surf for awhile. He seemed pretty excited about this and we headed out on foot. It's only a couple of blocks from Ohana to the Flagship, but about half way Johnny decided it was time to have a seat and watch from where we were. It was pretty obvious that he had hit a wall so we watched for a few minutes and then headed back to the car. I still had Marci's bike in the truck so we made a quick stop by her apartment to drop it off and headed back home. Just like on the way down, Johnny slept almost the whole way home.

It wasn't a long stay, and the whole time I was a little concerned that we were pushing it, but I think Johnny had a really good time. When I asked him if the trip had worn him out too much he said "Hey, I was awake for the good parts." Very cool kid.
-Mike

Joey Goes To Camp

Joey had his first day of camp today. It is called Camp Invention. He always talks about inventing stuff. Everything from flying cars, to time machines, and potions. He seemed to have really enjoyed it. He had to take apart an old broken home appliance (cassette player) and rebuild it into something else. Right up his alley! Sophie stayed home all day with us. We ran errands and went grocery shopping.

I have to have all kinds of things on hand to satisfy Johnny's cravings. Mainly pizza. I've never seen the kid eat so much. Strangely enough, he hasn't gained any weight. His cheeks and tummy are filling out, while his arms and legs are getting smaller. It's a side-effect from the chemo. He still has his hair though! Mike and Joey want to shave their heads in solidarity, but I'm not too sure.

Johnny is still tired and sleeps all day. Even after his transfusion on Friday, he is still very week. He has been getting transfusions almost daily since he was diagnosed. His body just can't make enough "good" blood to keep him up. All of his counts are down, red blood cells, white blood cells and everything in between. I'm still not sure what makes him so tired, the chemo or his numbers being so low. I hope that he starts to get more energy toward the end of the month -- I never thought I 'd say that one!

Joey came to me today and told me he thinks he has leukemia. I asked him why and he said he was tired all the time and he was ache-y. I took his temp. And he has a low grade fever. Sophie just got over hers, now I guess it's Joey's turn. I hope he isn't sick too. My dad and Aunt Sugie both have summer colds. This is the one thing that worries me with Johnny. We just have to wash our hands, and keep the sick ones away from Johnny until the end of the month.

The Results. Friends Visit!

The Doctor called last night when I was sleeping. Johnny still has 15% blasts in his marrow. If you look at the numbers that is great! When we were admitted in May, the blasts in his marrow were 97%. A big drop. But the doctors said that usually by the end of the first week, his counts should be 0%. He is just responding slower than anticipated. They will keep their eye on him. The doctors won't know for sure which type of consolidation treatment he will get until his cytology report comes back. Am I going to fast for you?

The first month (35 day period) of treatment is called "Induction", and it is basically the same for all patients with his "numbers" and type of cancer. After induction comes "Consolidation". This is a six month period where the protocol (mixture of chemo) is very specific to Johnny. Specimens from his first marrow biopsy were sent off to a lab where they will determine, from his DNA, which treatment will be best for him. His biopsy will also determine if he is a low, standard or high risk for recurrence. After consolidation, comes the maintenance phase. This will last at least 3 years. During maintenance, we will only have to visit the clinic once a month. That is kinda the Readers Digest version what our next 4 years will look like.

So it is kind of a good thing/bad thing. Good that his counts are dropping, but bad because they should be lower. He will get there, just give him some time!

Wendy and the boys came by. I wasn't sure if Johnny would be up for them, but he was. In a way, it's hard to watch him "play". Because you can tell he is really trying to make an effort. Kids shouldn't "try" to play! I'm glad they are here. The boys go upstairs to play legos. Wendy and I sit and talk "shop". Her husband Joe has been battling stage 4 melanoma for the past 3 years. I asked her if all she does is cry. It seems like that is all I have been doing. She hugged me, and we cried. We just talked cancer for about 2 hours. Sounds boring right? Not really. Not when you have someone you love who is fighting it. And you are scared.

I find it hard to have meaningful conversations that aren't about Johnny's cancer. If I am talking to someone, even if I start the conversation, my mind starts to wander back to Johnny. The weird thing is, I don't want to talk about it all of the time. I just hope that the person I am having a conversation with won't ask me an important question, or for my opinion. I'm not sure I could answer them.

We go upstairs to get the kids. They are watching Nemo on Johnny's portable DVD player. He looks tired. I ask Wendy to stay a little longer so I can take a shower. We have friends coming over for dinner. Joel and Crissy live in G-town and want to make us dinner. They cut their CA vacation short once they heard about Johnny. Joel works for MD Anderson. They also just lost their beautiful daughter Ashlyn at the end of April. I know it all sounds depressing, cancer and young kids dying, but in a way it is comforting to talk to someone who really knows about being scared or sad. It's hard to explain... I guess they can understand if your mind wanders off.

Joel and Crissy came over bearing gifts from their trip. A great stained glass "Aloha" hanging for us, and lots and lots of stickers for Johnny. And of course sock hats. He loves those things. Johnny smiles. We are all sitting on the bed talking to Johnnie, trying to lighten the mood, when out of no where Joey lets one RIP! NOW THAT MADE JOHNNY LAUGH! We all did. Always a good ice breaker -- or melter! They make dinner. It's awesome, I didn't do a thing. Joel and Crissy are great cooks. Grilled pork chops, with grilled asparagus and zucchini. YUM! Johnny came and sat at the table and picks at his food. Mike ends up going to chick-fil-a for him. He scarfs it down!

Joel, Crissy, Mike and I sit and talk about what we all want to do next. What does our life hold for us? None of us can answer that, but we do know that now matter what comes our way, we will be there for each other.

The Big Procedure Day!

It's Friday! I know for most of the world it means it's the weekend, but for us, Friday feels like Monday. Not the, "crap! I have to go to work..." kind of feeling, but the beginning of the week feeling. Friday's are our clinic days. Johnny gets a shot of vincristne every Friday this month. Vincristine is the chemo that, if it touches the skin, it burns. He will also get another spinal tap and bone marrow biopsy. This will be day 8 for treatment. Today's tests will determine how much cancer (blasts) are still in his blood and bone.

Sophie is running a fever, so Mike stays home with the kids. It's just me and Johnny. We leave the house about 6:30AM for our 7:30 appointment. I give him his medication on the way. He can't eat or drink anything before his procedure, so he takes his meds on an empty stomach. Bad move. We are almost there when he starts to throw up. Poor thing. Luckily I have a zip lock bag in the car. I will, from this point on, always have one on hand! I tell the nurse and doctor, but they don't seem to be to bothered by it. It's "normal". Okaaay, I change my definition of what normal is...

We are both STARVING. I said if he can't eat, then I won't eat (or at least not in front of him). Neither one of us have eaten since dinner last night. Johnny and I both fantasize about what we are going to eat when he comes out from the procedure. He wants a Mighty Kids meal and a coke. Finally at about 1:30 PM they are ready for Johnny. Woo-Hoo! I go back with him. There are a bunch of people in the procedure room. It's not "surgery" really. Although we are in the surgical area (like my medical terminology?) He is just heavily sedated, and the PA does the work. There are about 3-4 nurses, and the anesthesiologist, all crammed around Johnny. It's the end of the day for them, so they are all loose and talking up a storm. I'm my usual stand-offish self. All I can think about is Johnny, not small talk. I stay until he closes his eyes. I always hate that part. He fights it this time. Last time, by the time we counted to three, he was OUT! This time I can count all the way to 10. He closes his eyes. I watch the monitor to check his heart rate and pulse. His heart was racing at 78 beats per minute, now it slows to about 50. I have tears in my eyes as the nurses tell me to leave. I wish Mike were here! I hate being alone. Now, I'm not hungry. I don't leave to get a bite to eat, instead I eat a muffin from my purse that I picked up from our last hospital stay. yummmm...

After about 30 minutes they call me back to recovery. He is laying on his side, fast asleep. He must stay flat for at least an hour or he will get the "bends" because of the spinal tap. I let him sleep for about two hours. I stroke his hair, hold his hand, and just try to remember him. Every part of him. I cry. I hate being alone. My mind drifts to negative thoughts of the possibility of losing him. I tell myself to stop, but I can't. He is my baby and he is deathly sick. This is every mothers nightmare come true. I find myself just staring at him so I will never forget him. I don't want to forget his cute little nose or his long eyelashes. I don't want them taken away from me. So I stare. I hope my memories will last forever. I tell the nurse to have the doctor call me tonight with the results. And to bring me a coke. Last week when he opened his eyes, the first thing he said was "coke". I want him to have it as soon as he opens his eyes.

He wakes up and is happy that I have his drink waiting for him. He says his hip hurts, well actually he has a hard time sitting up, and I ask him what's wrong. THEN he says his hip hurts. The nurse gives him some Tylenol, he drinks his coke and we are out of there by 5:30! We are home by 6:30, have dinner and hang out. Oh yeah, I actually pass out from exhaustion and sleep until 8:30. Then we hang out and watch our bootleg copy of "Revenge of the Sith". Joey and Sophie go to bed. I take Johnny up. Mike is down playing video games. I "spoon" the little guy, and pray that he will be okay. He falls asleep in my arms, and then I cry. And cry. I'm just so scared. The worst thing anyone tell me that it will be alright. Because know one knows for sure. Not even the doctors. I try not to wake Johnny, but I guess I'm crying so hard I do. He sees me cry and I tell him I'm scared. He doesn't say anything. I wipe away my tears and go down stairs. I go to Mike and just cry. I'm scared. What will happen? He is so little. I don't want to lose him.

Jonathan wants to color, so I bring up the supplies. He and Mike draw and color for an hour or so. Johnny is so creative. He doesn't like using coloring books. His best work is on blank paper. He just doodles, and sketches whatever comes to mind. He is so free, no boundaries or rules. I encourage him to create something everyday. We paint, color, or cut daily. He wants to do play-doh, but the doctors said he can't. Anything that is sticky has the tendency to harbor germs. His white blood cell count is 30. It should be in the range of about 1,000-1,500 to be able to fight off infection. So no movies, stores, restaurants or play-doh. Johnny sleeps between us, and I quietly cry myself to sleep.

A new beginning...

WOW. This is scary. I remember talking with Mike in the hospital about coming home. It reminds us of when the kids were born. You're in the hospital, and you feel safe. You desperately want to go home and start your life, but there is this little voice inside saying "are you crazy?!". You want to go home and sleep in your own bed, but there is something comforting about being in the hospital and being able to track down your nurse or doctor to ask them a question. I like that part of the hospital. Information at your finger tips.

My friend Dympna came over about 10:00AM and picked up Joey and Sophie. It's great because she takes them. She doesn't ask, she just does it. If someone asks if we would like them to do something, it's much easier to say, "thanks, but I can handle it", then to say "Oh, God, YES. PLEASE!". I know that sounds crazy, but that is just me I guess. I don't want to inconvenience anyone.

It is a much needed break. Mike and I can start putting our life back together -- literally. The whole week before school was out, we went through the house to get things together for a garage sale. A BIG one. Clearing out furniture, toys, clothes -- EVERYTHING MUST GO. I didn't want to put things in storage. We were going to lease our house in Houston and live at the Beach house. Our house in Houston is 2,600 sq. ft. And in Galveston, the house is only 1,500 square feet! With that in mind, I really wanted to clean house and get rid of the clutter.

Our purpose of moving down was to simplify. I felt that we were getting caught up in material things, and the traffic, and hustle and bustle were wearing thin. I felt I was sufforcating. In G-town, it is a much slower pace. Your on Island time. Sometimes that can be a good thing, sometimes it can be bad.... But we love it down there. The boys (Mike included) can surf everyday, there is tons of land -- it's like having "free-range" kids. It is geared towards outdoor living. Biking, swimming, rollerblading. It's a beach town and we are beach people. So anyway, we packed all of our useless crap up, and we were headed down to G-town for a huge garage sale.

Then life happened. Change of plans. Mike and I spent all day unpacking what we really needed, like coffee tables and stuff. Most of the junk is still ready to be sold off and sitting on the trailer in the garage. The rest of the day was spent on paperwork and phone calls. Because of his suppressed immune system, Johnny will have to be home for most of next school year. I called the school. I knew no one would be there, so I left a message. About 5 minutes later the Principal, Ms. Messina calls me. I tell her what is going on and she lets me know that she will do whatever it takes to help Johnny along. She also tells his Kindergarten and First Grade teachers. They call immediately. Johnny is looking forward to being "home schooled". It's not really home school, but it's close enough. I will get a lesson plan and do most of the teaching, then a teacher from the district will stop by 3 times a week to make sure we are on track. Should be interesting...

Dympna brings the kids back about 5:30 PM. I'm grateful, but feeling slightly guilty. Joey is a piece of cake. But SOPHIE, she is a wild woman! I feel bad that Dympna had to have her all day, yet glad she won't home! They come home tired (yeah!), tan and happy. They have been at the pool all day long, every kids' summer vacation dream!

Johnny is up. He has been sleeping all day long. We all spend time together, eat dinner as a family and get ready for bed. We try to go to bed at a decent hour again, but end up talking and playing games until about 2AM. TOMORROW will be different! -- yeah right...

HOME!

It's Wednesday, and it looks like we might get to go home. The doctors and nurses keep saying "might". They don't want to get our hopes up. But I pack everything up anyway. It's only 10:00AM but we are ready to hit the road. I hope everything fits in Mike's car. Although we have been here since last Thursday night, it looks like we have been there for six weeks, not six days! Balloons, stuffed animals, legos, all kinds of goodies. Johnny learned how to build legos with one hand! Anyway, we take walks, but don't go far because we want to be in the room when the doctor's make their rounds.

Liz has the kids with her at her beach house. We told her we probably won't be home until 7 or 8 PM. I can't wait to be at home with everyone. Cuddle up in our nice, soft, squishy bed. Watch movies, or read. I don't care what we do. I just want to be a family again. Joey and Sophie have been all over the city. They have stayed with my sister, my parents, and even went to Galveston for a few days with some friends. They have gone out to dinner, saw the movie "Madagascar", went shopping, and Lord knows how much junk food they consumed! Sophie doesn't really understand the magnitude of what is happening. Joey does. He has been enjoying the time away from us, but I know at night all he is doing is thinking about Johnny. And probably about Johnny dying. After all, our experiences with cancer in the past have been less than favorable. Of the 11 people we know who have cancer, only 8 are still around. Uncle Larry, mom's brother, just passed away on Friday night from caner! Joey is worried I'm sure.

Joey knows that Johnny is sick, but it's still hard when your 9, and your little brother (the trouble maker) is getting all of the attention. I tell him that it's okay if he is mad at, or jealous of Johnny. Or, it's okay if he's scared. We tell him that the kind of cancer that Johnny has is different from the cancer everyone else has had. I think that makes him feel a little better. I don't know why. I don't feel any better about it. It's still cancer. And it's not just in one spot, it's all over, it's running through his veins. How could that possibly be better? We try and comfort Joey. Let him know it's okay to be frustrated, but he has to tell us when he is. I talk daily to him about it. I try and do special things with him, to let him know he is still my baby Joey... I hope it works.

The doctor's finally come in, and it's almost 4PM. We chat about what our future looks like, Johnny's treatment, and when we should call the doctor. Right now, we don't have a pediatrician. I mean we have one, but for the next three years, Johnny will not see him. Everything will be done through TCH. If Johnny has a fever of 101 and higher, we go in. If he vomits or has pain, we go in. We got all of our information about what we can and cannot do. Then they released us!!! YIPPIE! We hop in the car and take off for the homestead.

We get home about 6:30PM. Man, does it feel good! I unpack and wait for the kids. The house is too quiet. But it is also very peaceful and I am thankful for the down time. 8:30 PM rolls around and Liz shows up with the kids. Everyone is happy. They all run around and go from room to room to make sure the house is the same. We talk to Liz briefly and then she leaves. Aaaaaa... It's our little family again. We all hug and kiss and get ready for bed. But we end up staying up until about 2:00AM just talking and catching up. Maybe the next chapter of our lives won't be so bad after all!