OUR LAST FULL DAY ON THE ISLAND

Today is Saturday, and we leave to go home tomorrow night about 10:15PM. We have all had a BALL, and no signs of any sort of illness! WOO-HOO!

We arrived last Sunday about 6PM, and were greeted with fresh lei's, picked up the van and headed to the condo. It is a one bedroom, with a fully stocked kitchen -- we supply the food. As soon as we landed, Johnny wanted to get in the water, of course once we got our bearings and finally had a bite to eat, everyone could barely keep their eyes open -- it was 2AM our time. We didn't have any problems getting to sleep that night. It's about a four hour time difference, so we hit the hay early every night.

Monday (and every morning since then), Mike got up early and went surfing before we all woke up. By the time he got back to the room, we were all ready to get to the beach. My parents stopped by our room to see what our plans were, I think they decided to go shopping, and we were headed up to the North Shore to meet up with some friends, Colin and Kili, who live on the Island.

We went to Haliewia Town. One of our favorite spots on the North Shore. Colin told us of a spot where the local groms go to learn to surf, and it would be a perfect place for the boys, really mellow -- turns out, that's where Bay Watch was filmed too.

I had my camera ready to catch Johnny's first wave in over a year, we were all excited for him, and knew it meant so much that he was in Hawaii, my hands were sweating, and butterflies in my tummy in anticipation for him. Mike took the boys out and pushed Johnny into his first wave, and he caught it -- no problem, like he never stopped. My eyes welled up, with happiness and pride. He made it. He did it, just as brave and strong as he always was, grinning from ear to ear. I have chills just thinking about it again. It was incredible. Totally worth the wait, I am so glad we didn't push the trip during his hardest part of treatment in December.

We met Colin and Kili, and their beautiful kids Kiani(she's 9), and Stridder(he's 3) -- perfect for our kids. They all surfed and got to know each other, and then headed up to Sunset to get some pizza. Then called it a day.

Tuesday was our helicopter ride, which was amazing! Johnny and Mike were in the front seat and had a birds eye view the whole time. It was about an hour, and was PLENTY long enough for all of us, we hit a little turbulence while we were in a valley and about that time I was ready to land -- all of us were! It rained on us a bit, but it was worth it, we got to see whales and turtles, and of course the Island where Gilligan's Island was filmed. I WAS STOKED, of course it meant nothing to the kids. After the ride we hit the beach -- of course!

Everyday was whatever Johnny wanted to do. We would mention things to him, but if he didn't want to do whatever we mentioned, we didn't do it. We had dinner at this awesome steak house that night -- Chuck's. If you ever get the chance to go there -- do it. Johnny CHOWED DOWN on the fries, and all through dinner he kept telling he "these are the BEST fries EVER!".

Wednesday was a day at Waikiki. It is crowded, TONS of tourists (like we aren't!), but Liz set up a great day for us. My parents joined us as well. We started off on an outrigger canoe, and actually went surfing with it! It was a BLAST. Liz's friend's set us up with beach chairs and umbrella's, so we could chill out in the shade, which makes a day at the beach much more tolerable. Then we took a catamaran ride -- again, an incredible experience. We all rode on the netting up front, and the boys had their heads hanging off the very front of the nets. We weren't able to see much sea life, but lots of beautiful coral and a few fish.

Earlier that morning, the life guards spotted about 200 jellies, so we didn't get to go surfing, Johnny was disappointed, but we let the boys skate everywhere we went, so that made up for the no surf day. I guess there are a ton of skate parks here but since we didn't pack their helmets, I wasn't going to push the subject too much. Johnny seemed satisfied with the street just the same.

Liz took us out for pizza that evening, and it was yummy, I think all the meals taste so good because we have so much fun during the day, that by the time dinner rolls around, we are READY to EAT! Then she headed home, I guess she is used to taking day trips out here -- it kills me and I have seven days in between!. So far Wednesday was one of the best days. Just lots of Aloha spirit, and it had a really great vibe.

Thursday was our surfing lessons. It was on the other side of the Island (I know it sounds far, but it's really only about 45 minutes away), at Barbers Point. It was the PERFECT beach, quiet, we were the only ones, nice easy waves, and it pretty much never gets any rain. I can't believe that more people don't go there. The only folks on the beach were the ones taking lessons! Anyway, Johnny and Joey had private lessons, and I was part of a group. Since I have very limited skills, I was slightly ahead of the rest of the group -- but not by much. During the "talking" part of the lesson, all Johnny could think about was "let's get this thing STARTED!". Of course once the boys got in the water, they caught every wave that came their way. Johnny let the instructor push him into the waves, and Joey caught his own.

Mike figured out that Johnny wasn't exactly tired, but more scared than anything. Scared, not because of the thought of sharks or anything, but scared because he knew he didn't have his full strength, and wasn't sure of himself. He went back in after about 20 minutes. I think he had fun just watching Joey catch the waves. Joey was doing so well, the instructor took him WAY out, and gave him his board. Joey was catching tons of waves and even did the "coffin", that's where you lay down on your back on the board, with your hands behind your head, then get back up. He was STOKED! I told Joey that he deserves this vacation almost as much as Johnny does.

Friday, we met up with Kili and the kids at Waikiki again. We had so much fun, regardless of the crowds. Joey and Kiani took off and found out a pretty good break and surfed together all day long, Sophie and Stridder played in the sand together, and Johnny and Mike hung out in the surf. Johnny had fun, but gets tired pretty fast. Kili brought a boogie board, and he used that most of the day.

Another Make A Wish dad came up to me and asked if we were with MAW. I said yes, and he said his daughter was here also (they came from Vermont). Turns out, she has AML (another form of Leukemia), and just finished her treatment as well. We have a Luau tonight, and they will be there too.

Friday was great day as well. It's nice to meet a family, and have everyone hit it off so well. The kids didn't want to leave each other. Sophie and Stridder hugged and cried when they had to go home. I think we made some friends for life! Great family, shared lots of the Aloha spirit!

Today is kind of a chill out day, then the luau. It starts at 3:30 and we don't get home until 9PM! Tomorrow we have all day, and I think Johnny wants to hit Pearl Harbor before we go. And of course the beach. We might try and get back up to the North Shore again and surf the harbor. We will just have to see what the little guy is up for!

I'll post photos when we get home!

WE'RE GOING!

Mike and I decided to live life on the edge and GO!

Actually we are going to take every precaution known to man to make this safe trip for everyone. I called the hotel and asked for their "hypo-allergenic room", and I'm even trying to move our seats on the aircraft closer to a door. I know we will be on the flight for EIGHT hours, but it helps to sit by the entry doors because you have a better chance of getting fresh air versus the recirculated air more towards the middle of the aircraft -- where we are seated now. My friend Wendy gave us a box of Joe's masks, so we will use those as well (even though they loose their effectiveness after about 30 minutes). I even made Johnny take a dose of that Airborne stuff, it's just a bunch of vitamins and since he isn't on anything else, I can't see it hurting him.

All that said, we CAN'T WAIT to GO! We have literally packed and repacked our gear, snorkels, surfboards, wetsuits, and oh yeah, clothes. Johnny asked me why I was packing his clothes -- "I won't need them, all I'm going to do is surf!". When I told him that we might go out to eat or something, he just asked why he couldn't wear his trunks. I guess he's right...

Well I have a big day ahead, I have to drop the doodles off at the vet/kennel (they are so awesome with them), drop Daisy off at Mike's mom's house (THANK YOU!), and finish up the last bits of packing. Then, hopefully have time for a margarita tonight! WOO-HOO!

I'm going to try and post while we are in Oahu, so keep checking in!

Love To All ~ Jules

JOHNNY'S EMAIL ADDRESS: j.grom@yahoo.com

Because we can't reply to a person when they post comments, we (Kathleen) made Johnny his own email account. Please, keep posting comments on the blog, but if you would like Johnny to contact you, just email him at:

j.grom@yahoo.com

With the production of his Make A Wish skateboard, we have had people from ALL OVER comment on his blog, but we have no way of getting in touch with them. This way, we can!

THE PORT

Here is a photo of Johnny's port. He drew a picture of his heart and the vena cava that the white tube attaches to. If you look at the top of the port (not in this photo), you can see each needle stick. Since it is so tough, I can only imagine the pressure used to insert the needles.

Johnny had to get glasses too. Just for reading, and it wasn't due to his chemotherapy, he has astigmatism.

And the other photo is of the boys working on the solar system, and actually getting along too! Joey told me that I spoil Johnny. Before cancer, I would make him do things, now I do it for him. I guess he's right. Unfortunately, it's a fault all mother's have I think.

When Sophie saw the camera, she insisted that she was in the picture too. So there she is. It kind of helps to put the size of the port in perspective.

Clinic DAY

Today was Johnny's clinic visit, an actual office visit and chemo. Everyone was glad to see us, and asked if we were ready for our trip on Sunday. "Of Course!". We announced to everyone that Johnny has been "de-ported", and has to get an IV now, and yes, he's happy about it.

But, his numbers aren't that great right now. His ANC is 570, his hemoglobin is 9.0, and platelets are 135,00. Our trip is in jeopardy.

Johnny was actually supposed to go to Ohana Surf and Skate in Galveston tonight, to have a "autograph session" for his new boards, but Dr. Mahoney said "NO WAY!". Johnny is bummed out. I called the skate shop and talked to Boog (the owner), and let him know. Johnny talked to him also, and then things were better. I think a lot of times when we can't do things, Johnny blames me for talking to the doctors about it (whatever "it" happens to be that week). The whole way home and about 2 hours after the clinic, I totally got the silent treatment. After Johnny's conversation with Boog, life was good again. This is something that can easily be made up at a later date. Plus, his boards aren't in, so there wouldn't be anything for him to sign.

Now about O'ahu. After we talked at great length about the "what-if's", Dr. Mahoney gave us the green light. And then confirmed with his Chief of Staff, to make sure it would be okay if we went on Sunday. encouraging, huh? Basically, if we were to stay in Houston, we would essentially be in "Romano Lockdown". No kids out, no kids in. Dr. Mahoney took Johnny off of all of his meds, no chemo this week either, or, until we get back from our trip. Then if his counts are still low after we get back, Johnny has to go in for a bone marrow aspirate to make sure he is still in remission. Dr. Mahoney re-checked Johnny's blood smears today to make sure there weren't any abnormal cells (cancer). But, hey, we can still make the trip if we want to.

If we go, and Johnny gets a fever, we are in the hospital -- in O'ahu -- for who knows how long. Mike and I will be on pins and needles the whole trip.

On the other hand, this is all due to his daily oral chemo (6MP, and methotrexate) -- probably. Just like a few months back when Johnny couldn't start the delayed intensification phase of treatment, it took him weeks to get his counts where they should be. Oddly enough, he never ran a fever or was admitted, and seemed "normal" on the outside. I asked if we DO go, can he get in the water, and Dr. Mahoney said "yes", to both the ocean, and pool water. Also, back in Aug/Sep when he couldn't start treatment for low counts, his body was in a different place physiologically, and Dr. Mahoney seems to think that now, his body will recover more quickly than last time.

Right now, Johnny will have about 4 chemo-free days before the trip, and because of the numbers within his white cell counts are within almost the same range, he feels pretty confident about his decision. I hope that makes sense. I'll try it again though, Dr. Mahoney doesn't see a huge disparity between the types of white cells, which leads him to believe that since they are all equally low, then it is due to treatment, not illness. If Johnny were really ill, his white cells would be all over the board. And luckily, they are not.

Anyway, Mike and I have to decide TONIGHT what we will do. If we decide not to take the trip, then we need a signed letter from Dr. Mahoney stating that Johnny shouldn't make the trip at this point. And everything will be rescheduled. If we stay home, we know (okay, we are pretty sure) nothing will happen, if we go, we are pretty sure nothing will happen either. Even if we reschedule for a later date, something could happen anyway, or we all could be totally healthy and Johnny could catch something while we are there. It's a tough call. Or absolutely nothing could happen on the trip and we will all come home rested and relaxed.

It's all about Johnny's health. Would a delayed trip effect his will to be strong? Would a trip effect his immune system and land him in a far away hospital? Where's that dang Magic 8 Ball when you need it?!?!

At our next office visit, if Johnny's counts are still low, even with a BMA, we will have to cut back on his oral chemo. We will start with the 6MP, if that doesn't help his counts, then cut back on the methotrexate. It is really against what they like to do, because kids need the strongest meds available, but, if in the long run it's better for his counts, then that is what we will have to do!

WHEW! I will update when we decide one way or another!

Love to all~ Jules

I CAN'T BELIEVE IT HAS BEEN 9 DAYS SINCE MY LAST POST

It seems like so much has happened, Ii don't know where to start. I guess I will start at last week's office visit. It went very well -- actually not an office visit, just for labs. But Johnny's numbers were off the chart! Of course I had to tell EVERYONE about his thumb, even Dr. Dryer noticed his bandage and asked us about it. I told them, since he still wants to wear a brace, I think it hurts him -- even though he says it doesn't hurt. Cara and Dr. Dryer sent us to X-Ray, to see if it was broken. When they looked at it, it was still blue and swollen, so we all knew it was crushed or something. Every time someone asked him what happened, he had the biggest smile on his face, and said, "I ran over it with my skateboard!". He was so proud!

Before we went to X-Ray, the kicker from the Texans (Kris Brown) was at the hospital, and they were sending everyone down to see him and get their picture taken with him. Do Johnny and I know ANYTHING about football -- NO! But I threatened him that I wouldn't take him to the skate park if he didn't at least get his picture taken with him. Of course he agreed. As Johnny walked up to Kris, he was wearing his Tony Hawk Boom Boom Huck Jam sweatshirt, "skinny" jeans as he calls them, and a beanie or skull cap. He looked pretty ghetto. Kris asked him if he watched or played football, and he might as well have been talking Greek to the little guy. Of course Johnny said "no", but I pushed the two together to get a photo anyway.

Then we went down to X-Ray, and found out that Johnny DIDN'T break his thumb! I was excited, he was bummed. I was talking to Cara (our PA), and asked if we could get Johnny's port out ASAP, because we were going to O'ahu, and he wanted to go surfing. Since his counts were great, she signed us up for Wednesday! Cara rocks -- she is SO on top of it. I also found out that Johnny's maintenance actually started during his Interim Maintenance in September. Which means that he only has THREE YEARS of chemo instead of 3 and a 1/2. I know it sounds minimal, but every day counts!

That was last Friday -- fast forward to a few days ago (Wednesday). Johnny was able to get his port out! If you have had any sort of surgery, you meet everyone before hand. Surgeons, Anesthesiologists, Nurses, everyone. Each time someone introduced themselves to us, I automatically told them we want to keep the port. Each time I said that, they thought I didn't want the surgery to happen, they would say "I thought we were taking it OUT?!". I would say "Yes, but we want to keep it..." and they would say "You don't want the surgery?!", and then I would say "YES! I MEAN NO! We want the port to take home as a souvenir!" I wanted to see what it looked like, so did Johnny. Then we would get a weird look and I would say, "Can't you just put it in a jar so we can take it home?!" Luckily, someone snapped and figured it out. I was DYING to see what this thing looked like. Anyway, the surgeon came out after about 45 minutes of surgery and told me everything was perfect and handed me a jar with the port inside. I can tell why the little guy wanted it out, you can see every little prick hole made, and it is NOT a soft rubber coating that covers it either, it's pretty tough.

Thursday morning Erin, from Make A Wish, came by to give us our package of info for our trip. Make A Wish is so incredible! They have PAID for our: hotel, airfare, rental car, helicopter rides, surfing lessons, and a luau -- for all FIVE of us! AND they included spending money! It is truly an amazing organization! If you can, donate to MAW, TCH, or the Leukemia, Lymphoma Society! Anyway, it was an incredible day -- I was on cloud nine. I read, and re-read the info, but of course, couldn't comprehend a THING! Once Johnny finally woke up about 12:30 -- I told him about our adventures. Ever since then, no matter what he is doing, he says, "I can't wait until Hawaii...!". We can't either!


Tonight it's Friday and all is well. Johnny took off his dressing from surgery, and my best friend Kathleen came in to spend the weekend. This is our first time together since she came down for Johnny's diagnosis in May. We have always made time for each other, even if it was for a day or so. It has been over 9 months! The kids are fighting over who will get to sleep with her, and she and Johnny gleefully swapped barf/chemo stories. All is good! We both talked about how we try and find the humor in the oddest things and how other folks just look at us with such dismay when we tell them our "funny stories". We are having Sophie's "4th" birthday party this weekend too, actually next Sunday is her actual birthday, but we will be on a plane to O'ahu!

DLXSF.COM

It looks like the Johnny Romano skateboards are available to purchase!

I just went to the Deluxe website (actually my DAD told me to check it out), and noticed that you can purchase Johnny's board for $44.99. His board is small, for groms (kids), but I was on the Deluxe Message Board and saw a thread about making the next run of boards in a larger size -- so, it looks like if there is a need, Jim will make them larger.

I found that if you want to hang a skateboard on the wall, you can use one of those cheesy plate holders thing-y's. All you need is a REALLY long nail, and voila -- skateboard is hung! I have no idea if there are "official" skateboard hangers out there, but in a pinch, these work great!

If you haven't gone to the Deluxe website yet, here's how you do it: Go to: DLXSF.com, click on DLXSF STORE. Choose REAL for the company, and Decks for the product -- then click "GO". Scroll down to "REAL", and click on Johnny Romano. Deluxe has also put a few things on their homepage about Johnny as well.

Johnny is doing really well right now. He still sleeps until 11am, but once he is up, he's doing great. Appetite is back too! When he isn't catching up on his school work, he is outside skating. Trying all sorts of tricks too. Sometimes he gets hurt though. Of course he doesn't tell me either -- he hides it, or asks the kids he is skating with to not say anything to me. The other day I think he broke his thumb. I didn't know until later that night, when I found a wad of band aid wrappers stuffed under something. I asked him about it, and he just kinda blew it off. I asked what was going on, and he told me he was "doing a trick and something happened..." but not sure what. I took a look at his thumb and told him it was probably broken, splinted it, and sent him on his way. Since it has been three days now and it still hurts, I think it's broke. The weird thing was, he seemed really excited about it. It's his first real injury skating, and he was grinning from ear to ear. He told Joey "Hey mom thinks it's broken! That's so cool -- my first broken bone!"

We go to the clinic on Friday just for labs, I will mention it to the doctors when we get there.

I think he is calling for his order of Wendy's chicken nuggets! I better go feed him...

WE WOULD ALSO LIKE TO THANK JIM, AND THE WHOLE DELUXE TEAM FOR SUPPORTING JOHNNY AND MAKE A WISH! I BELIEVE THAT IT WAS THEIR ENCOURAGEMENT THAT KEPT THE LITTLE GUY GOING THE PAST FEW MONTHS! THANK YOU!