Goodbye 2005!

I'll keep this short. We are not going to miss 2005. Lots of death; my grandfather, my Uncle Larry, Joe Valley (a close family friend), and the most tragic of all, Ashlyn (the fifteen year old daughter of my best friend). Lots of cancer; Uncle Larry, Joe, Julie's best friend-Kathleen, and of course Johnny. Lots of hurricanes (ok, they missed us, but a lot of other people were not so fortunate).

There were also a lot of really cool stuff that happened in 2005. We have met a lot of really great people, and gotten to do some really great things.

Even so Julie and I will be celebrating the end of 2005 with Johnny at TCH tonight. We will also be celebrating the begining of a new year. I don't want to jinx anything, so I'm not saying anything about 2006.

Mike

MERRY CHRISTMAS!

Merry Christmas to all of our family and friends who have supported us through everything.

We wish you a very Merry Christmas and a Peaceful New Year!

Love,
The Romano's

ps: The Nutcracker shot is from one of the kids -- that's what happens when you leave cameras around unattended kids!

THE SEA AIR IS DOING HIM GOOD...

We have been at the beach house for two or three weeks now (I can't remember), and Mike and I think it has really perked Johnny up. It took Johnny almost the entire time to get enough strength to chill with his "peeps", -- short visits outside and I screen everyone for germs, coughs, and sniffles. It has really brightened his spirits, he has had a complete attitude adjustment, he's talking, and actually initiates the conversations now. It is so nice to see him up and around (dressed too).

Because we are in Galveston, it was impossible for the home bound nurses to come out to give Johnny his chemo shots every day. We drove to TCH on Tuesday, our nurses showed me what to do, and now I give him his shots -- it's only three days a week. Next week Johnny will finish up his consolidation period, and I will give him his last three doses of chemo! We still go to the clinic on Tuesday for counts, this chemo makes his red cells and platelets drop, and kids usually need transfusions. The Gulf Coast Regional Blood Center is doing special things for folks who donate between Christmas and New Years -- so if you have an hour to spare, save three lives and donate blood.

Last Monday was a total shock to me. I couldn't believe that Johnny's counts were so high. His ANC takes forever to come up, and I had actually planned that he wouldn't even start the last two weeks until the first of the year. This is the first time he has been on track with treatment ever! I just wasn't prepared for such a big day. I brought all of the kids up to the clinic, Mike went to work, I didn't read any of the info about what was going to happen (I studied my book, I'm surprised I don't have it memorized), I just felt so unprepared. But so relieved we were progressing with his treatment. Johnny had to get a spinal tap, two other chemos, and 4-6 hours of fluid. Luckily, we had Dr. Dryer who really sped things up for us, and was totally on top of what we needed to do to get home at a reasonable hour.

At first Johnny was NOT happy about what was about to happen, but then we started talking about Oahu, and his trip in February. Once he knew he was going to be on track with treatment (and trip), he was in a surprisingly awesome mood. It was nice, just the two of us chatting about things, I told him that I like moments like that, and he told me "me too, just not here...". It was just a really nice clinic visit. When he was knocked out for his spinal tap, he was OUT. Totally relaxed, then I reached for his hand, and he felt me, and gave it a squeeze. He wouldn't let go. He just held my hand. He wasn't scared, just wanted to hold my hand. I thought it was very sweet.

Once he woke up, he wanted Chick-Fil-A. He ate the whole thing, that made me VERY happy. He lost almost 11 pounds over the past month. Nothing fits him anymore. We are working HARD to change that -- he is eating very well, drinking a lot, and wants to stay healthy.

He has also had some really cool things happen to him as well. Back in October during the Texas Skate Jam for Make A Wish, we met with some folks in the skate board industry. One person (company), really took a liking to Johnny and wanted to do something special for him. Jim is the owner of Deluxe Skateboards, which is a parent company of a bunch of other skateboarding logo's (Spitfire). Mike and Jim have been emailing each other ever since the event in October, and have become really good friends. Jim wanted to make a skateboard for Johnny -- make him a "Pro", with his very own logo. The boards came in the other day, and they are so incredible. Mike and I are still awe struck about the whole thing. To get a company to put YOUR name on a board is HUGE. This is what all kids (and adults) who skate dream of. Johnny is on cloud nine, and his friends are all buttering him up to get a board. I will have Mike give you more about that later...

GETTING ON WITH IT

Johnny finished his three weeks of vincritine. It wiped him out pretty good. Once it really hit him he lost all his energy and his appetite (even though he was on the steroids). I was really glad to have that part of the treatment over. I hate seeing him so sick. Last week he had a break from the drugs, but he still had to go in to have his counts checked. If you read Julie's last post you know his ANC count was down to 20! That's probably the lowest it's been since he got sick.

He was scheduled to start the last phase of delayed intensification this Monday. Because his ANC count has to be at least 750 to start treatment Julie and I were thinking he would probably have several weeks off. Johnny's counts have normally been pretty slow to rebound so we were shocked when we got his counts back on Monday. His ANC count was 2600! That's almost normal for someone without cancer. Luckily, even though we didn't think he would get treatment, Julie didn't let him eat before his clinic visit so he was able to start on the new drugs. This phase will last the next two weeks. These drugs are pretty bad stuff so he will probably not be feeling too hot during Christmas or New Years. I think he was hoping that his counts would stay down for a little while. The silver lining is that he will wrap up the heavy part of his chemo at the end of the year, and be able to start 2006 on maintenance. It also means that there is a pretty good chance he will be feeling much better by the time MAW sends him to Hawaii in February!

Yesterday we heard some good news about the house. The report from the environmental company said the mold is contained to the laundry room. AND, it's NOT in the wood floors like we originally thought -- more good news. After the standard 1 week waiting period, the mold remediation crew will come in to tear out the walls/wood with mold, then another company has to come in to repair the walls and wood. And hopefully replace the carpet in the living room and dining room. Our insurance company has been amazing, and has made the whole experience very painless for us. We are so thankful that they truly have our best interests at heart.

Johnny is doing okay. We are force feeding him anything he wants (donuts, Ding Dongs, McDonald's), making him drink lots of water and trying to keep him out of the hospital. Joey said that Johnny's fingers looked pruney, I told him it was because he was still dehydrated. This morning when Johnny finally got up, I was sitting with him and noticed that his feet are all wrinkly. That's dehydration too. We are making him drink all day long. Yesterday we actually went out to run a few errands. We stopped for lunch at the Ocean Grill. That took about 1 1/2 hours, I wanted him to finish his food, or at least stay until he was full. He ate most of his fries...

We bought our "Christmas" tree. We went to the local nursery and picked up a Queen Palm and decorated it last night. Hey, it's more likely that Jesus was surrounded by palm trees than a Noble Fir when he was born. It actually looks pretty good. Mike said we should do it every year from now on, it will be our new family tradition.

Today is the 93Q Radiothon. A local radio station is raising money for the TCH Cancer Center. We did an interview with them last October, and they turned it into a song, and have been using it to get donations. I still haven't heard it yet. I have been listening all day, it's pretty heavy stuff. Mike called me today and we talked about the stories we have heard. Even for us, it's very heartbreaking. But we can't turn it off.

It has made me realize how much cancer sucks, and how incredibly strong the children are. I know I have talked about how much cancer sucks, but it has been 6 months now, and I have just taken our "new life" for what it is. Going through the motions, and trying really hard not to think about the gravity of it all. Taking for granted how special the TCH Team of professionals are. Listening to all of the families stories, some with really good outcomes, some other families aren't so lucky. As we were driving today, all of us were chocked up. Johnny kept looking at me to see if I was crying, I was but didn't let him see me. No one talked, we just listened. When we got to Moody Gardens, Sophie had a total meltdown completely out of the blue. I asked her what was wrong and she said she didn't know. I think it got to her, even at three years old.

I can't tell what Johnny thinks of it all. I know he's worried, but I don't know if he thinks he will be a long term survivor or not. I don't even know. What I do know is that I don't take anything for granted, and nothing is as bad as it seems. Whether it's a car that needs a new engine or a house that has mold, in the whole scope of things, it's not that bad.

ALMOST ADMITTED...

Today was just a clinic visit. Johnny was scheduled for Pantamadine, and CBC's. I thought for sure he would need a transfusion. He did the pantamadine first, then we waited for his blood results. I had to carry him all day long, he didn't have the strength to walk on his own.

The counts came back (except for his ANC), and his red blood cells were great -- 14.0. His platelets had dropped from 140 last week to 90 this week. It is lower than it should be by about 20 points, but still not enough to need a transfusion. I was talking to one of our nurses and was telling her that something just isn't right with Johnny. He's been weak, not really eating or drinking for over a week. I wanted to see what his weight was. I brought him back to the scales and he lost over 5 pounds in a week. His legs are smaller than my arms, and his hip bones in his back are sticking out. He is 49 pounds. He has always been little, but this was too much. Our nurse Robin, thought something was up, so she took his vitals. His BP, and temp., was fine, but his heart rate was 140. Normally it should be around 80-90.

The nurses put him in "triage', and we waited for a doctor. I knew most of what was happening was due to the heavy chemo he has been getting for the past three weeks. But I was still glad to see a doctor. I told her about his mouth, and what I thought was "thrush", but knew it must be something else. Once the doctor took a look in him mouth she knew why he wasn't eating or drinking. He had mucusitis. Almost like thrush, but more like one huge mouth sore all over his mouth and tongue. They pumped him with fluids and some meds to combat the thrush, and waited for his heart rate to come down. It finally dropped from 140 to 119. Since he didn't have a fever, we just have to take it easy with him. His ANC is 20. TWENTY. Normal for kids like Johnny should be between 500-1500. Right now, everything is off limits. No kids in, no kids out. I want to try to avoid ANYTHING that would put him in the hospital, especially right now. Who wants to spend Christmas in the hospital?

Johnny is finally NOT mad at me. He was so mad that I was telling everyone what was going on with him. He was crying last night because his legs hurt so much (from the Vincristine). His mouth is a mess, and he is wasting away. If I didn't talk to the nurses, he would have been admitted for sure within the next few days. Mike said to Johnny "Looks like your short day, turned into a really long day at the clinic.". Johnny said "Yeah, it's all mom's fault.". Oh well, so sue me for caring!

Yesterday, all of the kids from the neighborhood came by to see the boys. Johnny was too weak to get out of bed, and I think it scared some of the kids. All of the kids went in the back room to play video games, then went outside to the ramps. Johnny pulled the blinds in his room so he could watch. Finally he couldn't take it anymore. He came out of his room, still wearing his pj's, a skull cap, and his shoes. He went downstairs for a few runs. But mostly he watched. He came up after about 15 minutes with a smile on his face. That was nice to see, the first smile in more days than I can remember.

Our next visit is for Monday. He is scheduled for a spinal tap and to start the last two weeks of treatment. I don't think any of that will happen. His ANC has to jump 730 points for him to start. The good thing about that is, he won't be on chemo for Christmas. Hopefully New Years...

HOME SWEET HOME.... almost

After spending six days at my parents house, we made the move to the Beach House this afternoon. We all wanted to come down earlier in the week, but Johnny wasn't strong enough to make the drive. Today he seemed pretty weak, but we just wanted to set up camp, and get things rolling.

It looks like we will be at the beach house at least through the New Year. Our email address is the same, and I will have the snail-mail forwarded too. Just call us on our cell phones, or we will check our messages at home.

We had a great time at my parents house, it was almost like being on vacation. Their house is beautiful, like something out of a magazine. The kids have spent a lot of time there, so they felt very comfortable. My parents even bought us a new bed for one of their guests rooms. As much as we enjoyed it, we want to get the dogs from the vet/kennel and be a "family" again. Sophie and I went to visit the dogs while they were being kenneled and when we left, she started crying because she wanted to bring them home. The first few days, it was nice not having to worry about them, but then I started to miss them too. Mike will bring them down tomorrow night.

On Saturday the environmental inspector came by to test the house. He said that it doesn't look too bad! Of course he has to see what the mold sample results look like (a/c, heater, air ducts, wood, and even the furniture), but from what he can see, it isn't too serious. Mike and I were very relieved that at least it doesn't look bad! One of our adjusters said it could take up to 3 months for the house to get back to normal. But the environmental guy thinks it could be faster if the tests are in our favor. Everything could change depending on the results...

To say that this has been an emotional roller coaster would be too dramatic. Mike and I have just learned to go with the flow, and know that there must be a silver lining somewhere in this mess! Our main concern is Johnny's well-being. So far, he's been able to hang in there. Joey and Sophie are up for an adventure too. Their only worry is that Santa won't find us.

We are all settled in, and ready for whatever comes our way.

Johnny doesn't get treatment this week, only blood work, and the clinic isn't too much further from here than it is from our house. His next visit is this Wednesday at 12:30, so I don't expect to be home before 5 or 6. I will update more later...

LIVIN' LIKE A REFUGEE

Well, it turns out the damage to our house will cause a little more inconvenience than we originally thought. All of the new regulations around mold remediation will probably cause us to be out of the house nearly three months. We have already set up temporary shop at Julie's parent's house. The plan is to eventually get everyone down to Galveston while the repairs to the house are being made, but Johnny is too sick right now to make the drive down. We needed to get him out of the house because of the mold spores in the air, and Johnny's compromised immune system.

Our Insurance company has been awesome (Allstate). We really feel that they have our best interests in mind as well as Johnny's health. Since the damage is over 10 square feet we have to have a special company come in and do the remediation, and then another company and do the repairs from the remediation. It looks like we will be at the beach house from this point on.

We just came home to get a few things and then we are going back to my parents house. We kenneled the dogs until we know when we will be going to Galveston. As things progress and we move to Galveston, I will update you with our new numbers, hopefully we will be able to keep the same email address.

LAST OF THE DOX!

The office visit went well. We were home by 1:30 or so. Johnny hasn't felt well in a couple of days, like Mike said, it's a cumulative effect. I think he really started to feel the effects of the chemo on Saturday. Sunday he didn't get out of bed at all. I don't think he would have yesterday if it wasn't for the clinic visit.

I asked our PA a few questions about Johnny while we were there. Last Tuesday Johnny was having chest pains. One of the meds he is on is extremely hard on his heart, of course when he came to me I called the doctor's right away. It was after hours, so I had to talk to the HEM/ONC (hematology/oncology) doctor that was on call. He said it wasn't anything to be worried about. Yesterday, Ruth Ann -- our PA, said the same. It happens with the medicine (DOX). But it usually happens in teenagers. Johnny will get another ECHO in a week or so. He is done with this medicine anyway. I also asked about giving him something for pain. The other medicine, Vincristine (VIN), causes leg and jaw pain. They gave us Tylenol 3, but we have to make sure he doesn't have a fever before we give it to him.

I also told Ruth Ann about his BAD indigestion, so she gave us some Zantac. His indigestion is so bad he will vomit. Last night he was getting sick (from everything), and we were trying to give him his meds (Zofran and Zantac). He got one down, but kept gagging. He wanted to take the last one, put it in his mouth and tried to swallow it. Then he "got all Exorcist" on me. Luckily it was just water. Mike picked the half dissolved Zofran off my shirt later. We had a good laugh!

I asked about his counts. Last week his ANC was 5,600. This week they are 460. When he had the time this summer where he went for 4-5 weeks without ANY chemo or meds, they did another bone marrow aspirate, and tested his chromosomes to see if he was sensitive to some of the drugs. One test came back shortly after, and it showed that he wasn't sensitive. That is good. Then they don't have to change the dosage (lower). The other one took MONTHS. I finally asked for the results yesterday. It is the MTHFR test. I have NO idea what it stands for. But it states that -- get your medical books out -- he has a HETEROZYGOUS 677C>T Mutation. Basically he is missing a protein pair in his chromosomes, and this is the pair that processes some of the chemo. Which explains why his counts drop so low, and stay low for long periods of time. Unfortunately, we can't change any of his drugs. That is just the way it is. It's kind of a "huh..." Conclusion. Not good, not bad, just "huh...".

Our bigger concern is that our house flooded. Last Thursday our washer sprung a leak. It must have been leaking for a long time, because when the Insurance company's clean up crew came and started checking things out, they found black mold in our laundry room. Our main concern is Johnny's health right now, so we are in the process of figuring out where we are going to go until everything is cleaned up, we have a few options. After today, we might not be around to check emails, so if your looking for us, catch us on our cell phones. Looks like I will actually have to turn my on, AND answer it!

Hair Today, Gone Tommorow

Johnny's hair started falling out again. Julie and I noticed lots of stray hairs on his pillow yesterday, and then when I washed his hair yesterday it was really sticking to my hands and the towel. Although it got pretty long, it never really filled in from when he lost it last time so I doubt it will take long before he's a que ball again.

He's at the clinic this morning for a third dose of vincristine. The effects on his body seem to be cumulative, so I doubt he will feel too hot this afternoon. The first week it hardly slowed him down. Last week he was pretty tired, and he started to get sick to his stomach once in a while. Who knows what he will feel like after today. At least he will get a week off before he starts up on a new set of (even stronger) drugs. Julie or I will update this blog with how he's doing either tonight or tomorrow.

Mike