The Story of J-Grom

REAL SKATEBOARDS WORLD PREMIERE - SINCE DAY ONE

2011-03-12T11:03:00.006-06:00

Show your support for the JohnnyKicksCancer Foundation!

Real skateboards World Premiere 'Since Day One' - April 11, 2011
All door entry fees received ($2-$5) will benefit the JohnnyKicksCancer Foundation.

Check your local skate shop for details and times -- or we'll see you at:

Yaga's Cafe
2413 Strand
Galveston, Texas 77550

(drink and food specials too!)

Or check out Ohana Surf & Skate for more dets about the premiere.

Can't make the World Premiere? Support the JohnnyKicksCancer Foundation by making an online donation here.

Other ways to show your support around the country:

For the fourth year in a row, Tampa artist Chad Cardoza is continuing his relentless effort to raise awareness for JKC by auctioning a one-of-a-kind deck he created for the 2011 Tampa Pro 2011:

You can also check your local skate shop for the Actions REALized decks our good friends at DLXSF.com continue to make in memory of Johnny. Each year they tweek the logo a bit to keep it fresh! Make sure you get the new 2011 deck before they're gone!

And last but not least, our friends over at blind Skateboards are also raising awareness for JKC with their blind Brotherhood Series deck using Johnny's own artwork he created in 2008 before he relapsed.

Stay tuned for more ways to support the JohnnyKicksCancer Foundation and help us raise awareness for the most commonly diagnosed form of childhood cancer - leukemia - because 'common doesn't equal cured'.

Two Years Ago...

2010-09-22T21:56:00.002-05:00

...Johnny and I spent our last night together. It still doesn't seem that long ago. I still think about him every day. I still miss him very much.

Almost every night for the last two years I have sat down at the computer and looked at a few pictures of Johnny before going to bed. I'm not sure whether or not that's healthy, but until I get a call from Dr. Phil I'm probably going to keep doing it. A few days ago I was going through some pictures of Johnny skating. Pictures I have probably looked at at least a hundred times since he has passed, but this time I noticed something I had somehow been missing before. As I looked at one picture of Johnny doing an ollie it really struck me how happy he looked. I had always noticed his smile, but for some reason this time I was left with the impression that he was truly happy in that moment. When I went back through the other pictures I saw the same thing. He didn't just look like he was enjoying what he was doing, he looked like he was doing something he loved. It makes me smile knowing that Johnny had those moments.

What's changed in a year? This time last year going through those pictures would leave me with a tear in my eye (or maybe crying like a baby). Now I sometimes find myself smiling at those same memories.

Johnny,

You are the bravest person I have ever known. I love you, and I miss you very much.

Love,

Dad

Rock the Cradle, Ohana Surf and Skate Longboard Classic and the Johnny Romano Skate Jam For Make-A-Wish

2010-09-17T20:42:00.006-05:00

Lots of events coming up for JohnnyKicksCancer and the Make-A-Wish Foundation -- hope to see everyone there!

You can purchase tickets online for the 2010 Johnny Romano Skate Jam for Make-A-Wish - just click on the link to get your tickets before they're gone!

http://johnnyromano.eventbrite.com/?ref=ebtn

ABOUT A BOY

2010-08-18T19:17:00.002-05:00

You can now read the full story titled 'About A Boy', in Texas Monthly online at: http://bit.ly/wepbY

Michael Hall did a wonderful job, we are very pleased to say the least.

Just in case you missed the link for the video: http://bit.ly/be1d5b

I think it's a solid piece all the way around -- story, video, photos -- Texas Monthly covered it all.

Rock The Cradle for Johnny Romano

2010-08-18T13:16:00.001-05:00

Saturday, October 23, 2010 is the Third Annual Rock the Cradle for Johnny Romano at the Houston skatepark. Wiley has been the artist the past few years - he does amazing work! I love the way he incorporated Johnny's very own design into this years poster. Hope to see everyone there!

Texas Monthly

2010-08-17T13:12:00.002-05:00

A few months ago a writer from Texas Monthly, Michael Hall, contacted Mike and I and asked if he could do a story about Johnny and the skating community. Of course we said yes. We've been working with Michael since last Feb/March and the piece is finally finished and published. In addition to the feature article, they also produced a video -- here is the link:

http://www.texasmonthly.com/multimedia/video/home/15142/

I know I might be slightly biased, but it's a solid piece all the way around -- story, video, photos. Texas Monthly did an amazing job. We can't thank them enough.

FUEL TV CLIP: Rock the Cradle for Johnny Romano

2009-12-12T22:12:00.003-06:00

Here is a clip from Fuel TV about the Rock the Cradle for Johnny Romano event held Saturday, October 24, 2009:

Fuel TV

Giving: Johnny's Skateboard Legacy

2009-11-10T01:00:00.001-06:00

Giving: Johnny's Skateboard Legacy

Posted using ShareThis

The Story of T

2009-10-12T10:51:00.001-05:00

This is the story of Thomas.

He has leukemia. Actually this will be his second relapse, and third time to battle the most 'common' type of childhood cancer - leukemia. I knew Thomas before I even met him. Let me explain. Lisa, Thomas' mom went to school with Mike at the University of Texas and for a brief time one summer, lived at what is now our house, but back then it was just called 'the beach house'. Over the years Lisa kept in touch with Mike's grandparents, and one Christmas I remember sitting at Mike's grandmother's kitchen table as she read her Christmas cards to me with tears in her eyes. She received a card from Lisa and her husband Gary saying that their three-year old son, Thomas had been diagnosed with acute lymphoblastic leukemia. As Mike's grandmother wept, I tried to imagine what it would be like to be in Lisa's shoes -- I couldn't though. No one can.

We followed Thomas' story as he valiantly received his scheduled 3 1/2 years of chemothereapy treatment. Our families kept in close touch with each other over the years, especially after Johnny was diagnosed with leukemia in 2005. By the age of 8, Thomas was considered a long-term survivor (cancer/treatment free for 5 years), unfortunately it wasn't for long. Thomas relapsed when he was eleven years old, and because of the type of leukemia, the protocol didn't require a bone marrow transplant. This time the protocol was only 2 1/2 years and things were going well when suddenly, while still in treatment, Thomas relapsed again, only this time in his central nervous system (CNS - spinal fluid).

At the age of 13, with most of his life spent receiving chemotherapy, Thomas is fighting the battle against leukemia again. This time his best chance for survival (40-50% - which is considered 'great') is to have a bone marrow transplant. Our hearts ached to hear of Thomas' relapse. It's something only a parent who has faced this battle with cancer for the first, second or third time, could understand. No amount of photos or writing/blogging could take the place of first hand experience.

So I asked Thomas if I bought him a video camera, would he take videos of his journey and allow me to post them on our site, to try and convey to everyone, on some level, what it's like to be a 13-year-old kid battling cancer for the third time? He said yes. So here are the first few installments of the Story of T and what it's like to hear you have a 40-50% chance of survival, when you're 13 years old. It's hard to imagine, I know. But Thomas and his family are going to show us what treatment looks like and why we need your help to raise awareness and funding for cutting-edge research and improved treatment options for our children battling the number one killer by disease - leukemia.

Let me know what you think at: Julie@JohnnyKicksCancer.org

Godspeed T. The world is watching and we are behind you.

Thomas and the City of Austin Proclamation that September is Childhood Cancer Awareness month.

If you would like to follow The Story of T, please go to JohnnyKicksCancer.org website.

The JohnnyKicksCancer Foundation

2009-09-23T09:28:00.013-05:00

A Year Ago...

2009-09-22T21:51:00.002-05:00

...Johnny and I spent our last night together. It doesn't seem that long ago. Of course I've thought of Johnny every day since then, and I usually remember him laughing and running around, just being a kid. It seemed as though he always wore a big smile, and there are so many good times to think of. I've tried not to think of his time in the hospital, but somehow that last night always seems to creep in. I'm grateful for every minute I had with Johnny, and that night a year ago is no different, but he was so sick, and so tired. He had been fighting so hard for so long, and I knew (even though I tried not to admit it) that he just didn't have much more fight left. Johnny was too sick to sleep that night so we stayed up and watched movies and a surf contest on the internet. He pretended to be interested, but often I would look over and catch him staring at me. When I would ask if he needed anything he would shake his head. He couldn't talk much, and as usual his thoughts were completely hidden. When Johnny finally fell asleep around 4 or 5 in the morning I stepped out to collect my own thoughts. I had been praying to God for years to help Johnny, and after he relapsed all I wanted was to get Johnny to a bone marrow transplant, and a cure, but it always seemed as though he had one hurdle after another placed in his path. It felt like he was in some weird type of tug-of-war. There were times while we were in the hospital that Johnny had almost died, and each of those times was horrible. Each of those times he pulled through (often to the amazement of his doctors), but the thought of him dying like that was more than I could bare. When I stepped out of the room for the first time I didn't pray for wellness, but only asked that if it was His will to take Johnny that he wouldn't continue to suffer. When I got back to the room Johnny was still asleep. I asked the doctor not to wake Johnny when she made her morning rounds because he finally seemed to be getting some rest. Not long after that Johnny quietly slipped into a coma, and passed later on the 23rd. Looking back on that night I think he was ready to go. I think he was just waiting until Julie and I were ready to let him go.

Johnny,

You were the bravest person I have ever known. I love you, and I miss you very much.

Love,

Dad

Dream Vacation: Deep Thoughts by Mike and Joel

2009-07-13T19:49:00.005-05:00

Costa Rica has always been Mike's dream vacation. Less than 12 hours into our trip and after two surf sessions I asked Mike and Joel what they thought about the dream destination surf trip thus far:

I Miss Costa Rica

2009-07-13T15:49:00.007-05:00

I know techniquelly I'm still walking distance to the beach, and it's just as hot and humid here as it is in Nosara (okay, it's A LOT hotter in Houston right now), but I miss being there none the less. There is something to say about the jungles of Costa Rica and ice cold beer at 3pm... mmmm... beer....

Here is where we all hung out most of the day:

The Beach Cafe

Our group pretty much filled the place up everyday... They have the best veggie sandwiches and french toast!!!

COOLEST DJ ever

2009-07-10T11:15:00.004-05:00

I'm not even sure if they are called DJ's anymore, but this guy rocks! If you live in Houston, you can listen to AD on 94.5 and if you have Sirius/XM radio you can hear him on Faction or Alt Nation. You can also follow AD and his wife, Tara, on Facebook too.

NEW SHOES

2009-07-09T23:37:00.002-05:00

This came out right before we left and didn't get a chance to post before the flight:

http://etnies.com/blog/skate/collaboration/

We are blessed with amazing friends and family!

Just got home from Costa Rica late last night. It was incredible!

I will update more about our trip this weekend -- hugs to all, Jules

DC, next stop COSTA RICA!

2009-06-27T22:54:00.003-05:00

Our trip to DC went pretty well. It brought home the fact that I didn't pay much attention in my government classes! I am going to do a crash course on basic government, the House, the Senate, and appropriations.

When we left I kinda knew we weren't going to 'speak to the Senate' ala Dee Snyder and the PMRC hearings... but I still hoped something like that would transpire. It didn't. It was still exciting to have 'tea' (okay, it was just coffee) with a Texas Senator, then run from building to building in the tunnels of DC to meet with our constituents. Everyone we met with seemed open to listening to our story and why we need them to support specific appropriations (funding) -- through the Department of Defense (who knew?!?!) and Labor, Health and Human Services to further research and trials for childhood cancers. We also asked them to support funding for the Caroline Pryce Walker Act that was passed unanimously for childhood cancer research as well as support for the childhood cancer research caucus.

At first Mike and I were very emotional, then by the end of the day we were like, "Look, here's our story, yes, the numbers aren't in our favor but you can't deny the human factor, and that kids with cancer are being left out of NCI and NHI research and funding. It's unfair, and you can change it." Some Legislative Director's and Assistant's seemed excited about our story but when we left Mike and I wondered if we really made an impact. As we left one office to meet the next representative we were stopped in the hall by an assistant to let us know they had already heard from two or three of the people we already met with and wanted more information about our appropriations! That was really cool to hear something within minutes. Now we wait and see what happens next....

We came home Wednesday and in the morning we are off to Costa Rica for a few days -- with 40 of our closest friends. We leave tomorrow -- early -- and you know I'm not a morning person -- so I better get going. I hope to update more while we are on our trip.

ONE TRICK PONY

2009-05-26T23:04:00.003-05:00

Johnny didn't really care for Mr. Boo Boo very much.

Yep. That's me lately. A one trick pony. I think I used to juggle projects pretty well, but since Johnny passed away -- nope. Not anymore. I'm a one project kind of gal. Don't get me wrong, it's not that I have one project going at a time -- hell no. I like to start many projects all at once, big ones too, knowing good and well I can only focus on one at a time. Just when I think things are slowing down or a project might end -- HA! Snafu's, bugs and wrenches come flying right for me. Luckily I was born on the same Island as Wonder Woman -- the wrist cuffs (or gaudy gold bangles depending on what era your from) are standard issue and have really come in handy.

So here's a few tidbits of what we've been doing...

First and most importantly, we are going on a family vacation to Costa Rica! WOO HOO! We've never been before and Mike has always wanted to go. He is so excited about the trip he has been buying clothes (surf trunks) for Joey and himself, had a 'meeting' Saturday night at our house (ahem, my parents...) about the trip with our 40 or so friends that are also going (unfortunately we don't remember to much of the conversations), and then I knew something was up when he called to tell me bathing suits were on sale at the Gap (it's been a few years since I bought a new one). I'm really happy for Mikey. He needs something good to focus on for a change. - We all do!

Before we go to Costa Rica though, Mike and I are going to Washington DC, on behalf of CureSearch to speak to Congress about increased funding for childhood cancer research. Okay, this was totally my idea... but Mike has been a good sport about it. Hey, what can I say? I'm a mom on a mission -- don't get me mad, because I will be all over your ass like fly's on a rib roast.

Our other 'side' projects --

Starting a foundation and getting 501c3 status for JohnnyKicksCancer. HUGE. I had no idea how big the project would be, but it's been fun and definitely worth it. We're still fine tuning everything, but I will keep you guys posted....

Probably the biggest project as well as the most bitter sweet, is the house. We are tearing it down -- actually someone is going to haul it off -- suckers! To demo a house is like 12-15 k -- and that's the 'bro' price, if they take it, it's practically free. Estimates to fix our house are around 80-100k, but if you've ever done any home improvements before, you know that number will increase to at least double the price of your original estimate... It will be interesting to watch them cut the house in half or whatever they do to it to be able to drive it down the highway.

Last week my sister and I packed the house. The whole thing. Everyone, even the place where we bought the packing supplies, thought it would take a minimum of 4-5 days. But like I said, we are moms on a mission -- so get the hell out of our way. Movers are coming this week to take everything to storage and then the 'house movers' will take the house about a week later!

Now all we have to do is find a new place to live... actually we have. Found a builder, house plans and now all we have to do it choose tile and paint colors. Sounds simple enough... that part should go smoothly, right?

WHEW!

2009-05-14T09:07:00.004-05:00

To say that we've been busy the last 6-8 months is a colossal understatement. May is usually pretty busy anyway for parents, with the exception of last May when Johnny relapsed, I think May '09 takes a close second for being one of the busiest months ever for our family...

Here are a few highlights from the last few weeks:

The Ashlyn Would Go Grom Contest -- Sophie actually surfed (her new name is Surfie...)! Both Joey and Sophie did great and can't wait for next year's contest.

12th Annual Yaga's Children's Fund Wild Game Cookoff and Silent Auction. The silent Auction raised over 25k for children's charities -- 7k of the total was from JohnnyKicksCancer and will go to the new foundation! We had some pretty incredible items -- the Endless Summer trip for two on CO to Costa Rica - accommodations at Casa Agusto -- Robert August's home in Costa Rica, two giant skate duffles stuffed with decks, t-shirts, DVD's, & helmets, a longboard and shortboard shaped by SPD, tons of jewelry -- lots of good stuff!

You guys have to come next year! TONS OF FUN!

PoPo

2009-05-05T10:40:00.003-05:00

Last night at 8:56 pm my father, Patrick Michael Romano (PoPo to his grandkids), passed from complications related to pancreatic cancer. He slipped away very peacefully surrounded by his family.

My dad will be greatly missed by both his family here in Houston, and his many good friends and associates in California where he has called home for the last 33 years.

Services for dad are still pending, but I will update as soon as I have more information.

Rest in peace dad.

Mike

LINKS

2009-04-30T20:45:00.007-05:00

Here are a few links from the dedication last weekend:

galvestondailynews, skatehouston, houstonpress

As quickly as the park opened, this morning I heard on our local news station that the park was already closed due to the 'swine flu'... Temporarily. It's a bummer for the kids, but I can understand the reasoning behind the closure, it's for the safety of the kids and the community... It will be opened again very soon, I'm sure.

Don't forget this Saturday, May 2, 2009 in memory of Joel and Crissy's daughter Ashlyn who passed away April 21, 2005, there will be the Ashlyn Would Go Grom Round-Up surf contest, for kids 13 and under. See you guys at the beach!

SATURDAY, APRIL 25, 2009 SKATEPARK DEDICATION

2009-04-27T20:25:00.004-05:00

It was a beautiful day and we had a great turn out! Thanks to everyone who came out to help celebrate with us and to the Texas Gulf Coast Surfing Association (TGSA) who put the contest on hold for a while so folks could be at the dedication!

HAPPY BIRTHDAY JOHNNY

2009-04-22T21:14:00.023-05:00

April 23, 1998 was a very special day in our lives. Our second little boy was born (who we were positive was going to be a baby girl) and our family was almost complete -- until 4 years later when Sophie was born. Now on your 11th birthday, our family is incomplete again, because we don't have Johnny with us anymore.

Happy Birthday little guy! We miss you and hope you are having a blast in heaven skating the perfect bowl, or surfing the perfect wave, breaking only for Chick-Fil-A nuggets and drinking massive amounts of Dr. Pepper. It really sucks without you baby boy.

I love you so much,

Mom

GALVESTON CITY COUNCIL

2009-03-26T19:45:00.003-05:00

As I was driving home after today's City Council meeting, there was a beautiful sunset to the right of me, to my left, dark skies were the backdrop to a beautiful rainbow, and right over us was a thunderstorm. Seems to be our theme lately -- clear skies ahead.

The meeting started at 4:00pm, with a full agenda -- recovery items, beautification items, budget items, FEMA items -- and renaming the skatepark in Johnny's memory. When it was time to open up the meeting to the public for discussion regarding the skatepark, Rhonda and Rebecca were the first to be called, then Brax (one of the author's of the proposal) -- they all had very touching tributes/justifications about renaming the park in Johnny's memory. I really didn't think I could get up in speak -- but then the Mayor called my name. Knowing I wouldn't make any sense if I tried to wing it, I prepared something instead:

"I'd like to thank the Parks and Recreations Board, Rebecca, Brax, Barbara and everyone who has supported Johnny and kept them close to their hearts. Even now Johnny's message is global and continues to bring people together for reasons I can't understand or explain. It would be an honor to the Romano family and hopefully the skateboarding community to have the park renamed in Johnny's memory.

Johnny skated everyday -- healthy or sick, with friends or professionals -- which the average person might find impressive or even brag about. Yet Johnny who many feel represents the true spirit of skateboarding wasn't impressed with anything remotely related to stature. Johnny was about a shared drive and love for the sport -- skating has never been about who you are, sponsorships, age, gender or skill. The universal element that bonds the skating community is simple: a pure passion for the sport. This quality cannot be learned, taught or practiced. People who me Johnny quickly felt his passion and knew it reached far beyond skateboarding -- he was passionate about lie, never wasting a moment. It was his spiritedness that soon became synonymous with what some felt was the true meaning of skateboarding.

For an hour, one Sunday morning last May, the Parks and Recreations board quietly opened the gates to the 'almost public' skatepark -- allowing Johnny to skate on last time before chemo started. Only now can I understand what a beautiful gift the Board gave our family that day. It's amazing that when a small town with a heart the size o Texas, told a small boy 'Yes" -- how much impact that one word, for one hour, had on our family -- never knowing it would be Johnny's last time to skate.

It's the little things in life that make a difference -- just saying the word 'yes' can change a life, a community, a family and has left us with a lifetime of memories that we will never forget -- watching Johnny skate the empty park all to himself, with a big smile on his face and his friends and family cheering him on.

May the memory of Johnny and his unwavering passion for skateboarding and life, continue to inspire generations of skaters as well as those who have followed his amazing story of strength and courage. Roll Forever. Thank You."

I honestly can't remember much about the entire thing, except that two Council members spoke and said they wished they would have gotten a chance to meet Johnny -- then the City voted unanimously to rename the park in Johnny's memory. It's official.

We will schedule some sort of ceremony for Saturday, April 25 to celebrate the new name -- and Johnny's 11th birthday. I will update more very soon.

CITY COUNCIL MEETING

2009-03-22T11:41:00.001-05:00

Thursday, March 26, 4pm -- Galveston City Council will vote to rename the skatepark in Johnny's memory. Everyone is invited -- there is strength in numbers!

City Hall

823 Rosenberg (room 200)

Galveston TX

JOHNNY EVENTS

2009-03-06T12:40:00.001-06:00

Here's a rundown of some upcoming events organized by family, friends and maybe the City of Galveston -- all of which need your support!

Race For A Wish - 4/25/09

Mike's cousin Lucille, a teacher at Klein Oak High School, has organized her 3rd annual Make A Wish walk -- this year event is in Johnny's memory.

Race For A Wish (5k run/walk)

Date: Saturday, April 25, 2009

Time: Sign-in @ 7:30, Start Time: 8:00am

Where: Klein Oak High School track

Early Entry Fee: $15.00 adults/$10.00 K-8th grade

Day of Walk fee: $20.00

Each Participant will receive a "Race For A Wish" t-shirt. Donations accepted! If your company or organization would like to be a sponsor (your logo on the t-shirt) contact Lucille. Not an early riser? Can't make the event? No problem -- you can Sleep For A Wish and still get a tshirt! Contact Lucille at: lrowley@kleinisd.net, or Patty pkravetz@kleinisd.net or Darla dsparks@kleinisd.net.

Rock The Cradle - 10/24/09

Our friend Barry is already planning his Rock The Cradle event scheduled for Saturday, October 24:

wcsk8.com or rockthecradle.wordpress.com

Last year Barry's event raised 10k for the JohnnyKicksCancer fund.

The Jonathan M. Romano Memorial Skate Park - 3/26/09

The City of Galveston

And last, but far from least -- The City of Galveston will vote March 26, at 4pm to rename the new Galveston skate park in Johnny's memory. Mike and I had no idea our friends submitted the proposal to the Parks Board who voted unanimously in favor of the proposal. I bought Sophie and Joey with me to the Parks & Recreation Board meeting, and we were touched by the number of people who came and showed support -- in the middle of a work day! Not sure how many people attend the meetings outside the P&R Board members, but this particular day was standing room only.

Brax and Rebecca (authors of the proposal) spoke to the Board about why they wrote the proposal and what a great kid Johnny was, then Rhonda spoke in support as well. I tried my best to keep my composure while telling the Board Johnny's story, what a special kid he is and how honored our family would be if they supported the proposal. One very sweet gentleman on the P&R Board spoke before they voted and said, "I know men aren't supposed to cry, but this story really touched my heart." When the Board gave their 'I' vote, my 'I' was the loudest -- of course it didn't count, but I had to vote...

Now it's up to Galveston City Council to vote in favor of the proposal. The Council meetings are always open to the public -- I checked to make sure if I posted this information I wouldn't get in trouble if a ton of Johnny supports showed up. BRING IT PEOPLE! Don't forget to wear you Johnny stuff! Mike and I think it's incredible that our friends thought about Johnny and our family enough to do this, and it's beyond words the City of Galveston supports us as well.

Last Saturday night after the kids were asleep I decided to Google Johnny. He still pretty much dominates the first 15 pages -- with the exception of some old baseball player named Johnny Romano sprinkled here and there. As I was surfing through my Johnny's info, I stumbled across this:

johnnyromanowasthes**t

Just to let you know -- I have no idea who these people are and they didn't contact us for our 'approval'. As far as we know, money made from the sale of this shirt isn't designated to any non-profits we support (MAW, GCRBC, TCH, etc...).

MAKE A DIFFERENCE

2009-03-02T23:09:00.003-06:00

Strength in numbers! If you would like to write the National Cancer Institute (NCI -- they fund the most clinical trials) and ask specifically for more childhood cancer research funding here is the email address:

ncirecovery@mail.nih.gov

One interesting bit of information I learned about Bills and Acts -- when the government passes an Act or Bill, that is only the first step. Funding for them is the hard part -- they must be voted on as well -- sometimes years later!

This is what I emailed them:

Dear NCI Office of Advocacy Relations:

I am a mother of three -- two of my children will be luckily enough to have a long, happy and healthy life. Our middle child, Johnny, is not so lucky. At the tender age of 7, he was diagnosed with standard risk ALL. The medical staff at Texas Children's Hospital (3rd best children's cancer hospital in the country) assured my husband and I Johnny would be the 80-90% of kids who make it to be a long term survivor and beyond. We considered ourselves to be one of the fortunate families because Johnny seemed to stay strong throughout most of his 31/2 year protocol.

Unfortunately, at the age of 10, and just a few months before Johnny's protocol ended, his ALL relapsed. During induction he became septic, then after numerous bacterial infections and fungal infections in his lungs his 'standard risk' ALL morphed into AML. Johnny lost his battle with leukemia on September 23, 2008 -- or what would have been his last day of treatment had he not relapsed. No one can explain why he relapsed or why his ALL morphed into AML. The team of highly skilled professionals at TCH were amazing -- they not only treated Johnny, they loved him as well.

Johnny's story is heartbreaking on many levels, but the fact that his cancer always stayed one step ahead of the best care on the planet is tragic. Until researchers have the funding to understand, learn and conquer childhood cancers, they can only attempt to treat cancer -- one symptom at a time. Treating children using this type of 'protocol' leaves researchers, families and children always steps behind the ever changing cancer cells, never getting the opportunity to be in the lead -- or at the very least, a chance to catch up.

Please don't let childhood cancer research funding become a priority only when your child has been diagnosed. Use the funds allocated from the stimulus package to help researchers lead childhood cancer treatments, not the other way around.

Warmest Regards,

Julie Romano

WHAT THE HECK HAVE WE BEEN UP TO?

2009-02-17T22:51:00.005-06:00

I feel completely overwhelmed with the enormous amount of crap we have to do to get our lives back on track. Still haven't settled with insurance companies (more our fault than theirs), just thinking about what we have to do -- regardless of our decision to remodel (the least favorite option) or to rebuild (hands down our first and favorite option!) -- both require thinking and follow through. But the moment I start formulating a plan I feel like Homer Simpson -- and suddenly a happy little monkey playing the cymbals pops into my head. The next thing you know it's the weekend -- crazy --! WOO HOO! mmmm....donuts...

The key to successful planning something of this magnitude is to have a clear mind. Really, the only way to organize your thoughts and find your 'focus' is to sleep on it. Once the kids are at school, my day is already laid out for me -- I know if I don't get my nap on now, it just starts to pile up. The next thing you know it's 2:30 -- and time to get the kids. It never fails, when you are this busy, time seems to evaporate into thin air. Even after a full day of 'planning to plan something' I still feel like there aren't enough hours in the day! I know you're thinking I'm being too hard on myself -- nothing happens overnight -- just step back and allow the process to evolve. I know, I'm trying -- baby steps. You guys will be the first to know if an actual thought happens (no, talented little monkeys playing beautiful music don't count)-- Promise.

Aside from the daunting task of 'planning to plan something', we've been doing stuff like this:

Celebrating birthday's! Sophie is SEVEN this week!

Hangin' in the Oppe gym -- donating blood in Johnny's memory.

Proudly watching Sophia's Kodak moment!

Hosting yet another wild party -- luckily, our neighbor's didn't have to call the cops -- this time!

IT DOESN"T MATTER WHICH SIDE YOU'RE ON...

2009-01-12T21:18:00.003-06:00

Go to citzensbriefingbook.change.gov and vote to increase childhood cancer funding.

Find the "SEARCH" box

Type in childhood cancer

Click 'vote' or tell your story

"Share your ideas on any issue facing the new administration, then rate or comment on other ideas. The best rated ideas will rise to the top -- gathered into a Citizen's Briefing Book and delivered to President Obama after he is sworn in."

I can't do this by myself (but I'm trying!). Get the word out! Shit, if they can make Viagra and perfect breast implants they can find a cure for childhood cancers...

(sorry, I'm PMSing)

PLEASE HELP

2009-01-11T22:28:00.004-06:00

Please help further childhood cancer research by signing this petition!

thepetitionsite.com/1/curechildhoodcancer

BLOOD DRIVE AT OPPE ELEMENTARY THURSDAY, JANUARY 29, 2008! Sign up NOW!

Dang! you guys listen! I've already seen a bunch of names sign up -- THANKS!

Back on the Island

2009-01-03T19:07:00.003-06:00

Julie's parents have a vacation home in the same neighborhood in Galveston where we live full time. Their house is much newer construction than ours, and fortunately weathered Ike without major damage. Both Joey and Sophie have been eager to get back to their friends and schools in Galveston so we decided to move down to the Batten's place while the kids were on Christmas break. We started packing everything up on the Saturday after Christmas, and we were pretty much moved in by Sunday (pretty easy when all you have to pack are clothes). The house is really nice, and both kids have their own rooms again. Hopefully we won't be here too long, but it's a great place to stay while we are getting our place back together.

We've now been down about a week, and it's been really nice to be back on the island. The Colombos held a New Year's Eve party and we got to see almost all of our friends in one place, and at one time. It felt like a coming home party as much as anything else. We all got together again on the 1st to help clean up, and eat all the leftovers from the party. It was a great reminder of all the reasons we love living down here so much.

Although it's been good being back there have been some tough moments for Julie and me. There are memories of Johnny everywhere down here. I see him at the beach, or riding his bike or skateboard all over the neighborhood. The kids have been having a great time with all their friends, but whenever I see the group running around I always expect to see Johnny right in the middle of everything. It just makes it so much more apparent that he's missing. While we were in Houston I felt like I had come to terms with the fact that Johnny was gone. Most of my memories were of him sick and in the Hospital. But down here it just doesn't seem real. Here I see him healthy, full of life. He was so much a part of everything that it just feels like he is right there, just out of reach and out of sight.

I recently went surfing in Galveston. It was my first time in the water here since Ike, and only my second time surfing since Johnny relapsed back in May. The whole time I was in the water all I could think about was the last time I took the boys out surfing together. It was late April or early May, and one of those really clean offshore days we rarely get here. Everyone was having a good time, but it was definitely Johnny's best day of surfing. He was catching a lot of waves, and although they were overhead on him, and really peeling off quickly, he was making everything. He would drop in and disappear for a few seconds, and then I'd see a fan of spray followed by a kickout near the jetty. Then Johnny would paddle back out as fast as he could with a huge smile on his face. As soon as he locked eyes with me he would start screaming "Did you see that?!?" Much like his skating about that time it was apparent that he had suddenly figured something out. Worked out that one turn or something that all of a sudden clicked and made everything easy and a lot more fun. At the time I thought that was just the beginning of something, not that I was witnessing the end. It doesn't seem right. It isn't fair.

I have a feeling that those types of memories are waiting for me all over the place down here. I welcome them, but they do hurt because they remind me that he's gone.

Merry Christmas

2008-12-25T20:20:00.002-06:00

Hard to believe a whole year has passed since these photos:

THREE MONTHS

2008-12-23T11:02:00.004-06:00

I guess it's all relative because sometimes 3 months seems like a long time and then again it can feel like nano seconds. I'm not sure which way I am leaning today -- but more times than not it feels like an eternity since I held Johnny in my arms.

Sunday was the first time since September 23 we've been together as a family -- we stopped by to visit Johnny, and it was Sophie's first to visit since he passed. Of course the kids did well, it's Mike and I that have a hard time. Everything looked beautiful -- My sister dropped off a stocking for Johnny a few weeks ago. It's 'Stewey' from Family Guy and has a photo of my nieces, Sophie and Johnny playing together. My mom bought some Christmas greens for Johnny too.

Mike was named after his Grandfather, so it's a shock for Joey to read this:

But this is the one that gives me the chills:

Last Minute Gifts?

2008-12-18T15:54:00.002-06:00

If you've been looking for JR products I know of a couple of shops on the island that still have stuff.

Ohana has shoes, decks, hoodies, and t-shirts. I think they may have the Spitfire JR wheels too.

Surf Specialties has hoodies, and at least one full JR board with his last deck design, thunder trucks, and JR wheels.

In Houston Surfhouse has JR decks and wheels, and they may also have the t-shirts and hoodies. There may be a few other shops that have Johnny's stuff, so you should check with your local shop first.

Merry Christmas

I CAN'T LIE, IT'S BEEN ROUGH...

2008-12-10T22:20:00.003-06:00

I guess grief comes in waves -- for awhile I was doing pretty good, but lately it's been rough. The pain is crippling -- it's sucks big donkey -- well you know what I mean. But instead of talking about how much life bites the big one right now, I have a good story...

Okay, this part sucks, but it gets better -- Johnny's headstone is in. On the way home from Joey's paintball party Saturday, Mike stopped by to check it out. It's cool (duh), and reads 'Roll Forever'. Mike also had the boys with him, Joey, Kyle, and Joseph -- just as things started to get a little emotional -- BAM! -- out of nowhere the cutest little bunny runs out from behind the headstone giving everyone a heart attack. They all thought it was odd how the 4 of them had been walking around the very small area and none of them saw the bunny -- it just 'appeared'. They laughed their butts off knowing it was Johnny telling them to 'knock it off!' Johnny loved scaring the crap out of people (apparently he still does!).

I stopped by on Tuesday. Super hard day. I cried a lot -- and begged Johnny for something big -- a 'sign' -- to let me know he's okay. But nothing. No rabbits, no butterflies, no dragonflies, no birds, no antelope, no grizzlies, no crocs ( you get the picture), -- or anything you read about that might symbolize a loved one is with you. More tears. And it was pouring down rain. The harder I cried, the harder it rained -- I would stop and the rain would stop. I got out of the car to see the 'family garden', and cried some more (FYI: buy Visine stock!). One thing I love though, waaay before May 26 was ever a reality, Johnny wrote in the steam (or what some would call the 'grungy film') on the inside of my sunroof: 'MOM' with a bunch of stars all around it. It makes me look up to heaven and smile. Okay... I'll take that as a 'sign'.

Typical Houston weather yesterday, rainy and muggy -- not good for the hair... For strictly vanity reasons, I almost turned the a/c on in the house -- but heard it might be cold in the morning (today), so held off. MAN it was friggin' cold this morning and only got colder as the day went on -- it was still flat and gray, with rain.

This morning was 'Morning with Moms' at Sophie's school -- something we've done since Joey was in Kindergarten here -- it's breakfast for Moms only and of course their kids. There I saw fifth graders who were in Johnny's Kindergarten and First grade classes. They had play dates together, I saw the girls who used to fight to do his homework for him, I was their room mom for two years -- and it really sucked to be surrounded by hundreds moms with their little boys. Of course I had my Sophie who always makes me smile, brightens my day and makes me hug a little tighter - but this morning still sucked.

Tonight was our orientation at Bo's Place and I had to pick the kids up early from school -- it was still cold and rainy. (More sucky stuff -- Bo's is near the Medical Center so it was the first time I drove the 'route' since September). Bo's isn't 'therapy' -- it's a peer support group, geared for kids and parents who have also lost a sibling/child. I'll fill you in later ...

We do our thing, yadda, yadda, yadda... and as we are leaving Bo's, it started snowing -- well, probably more like sleeting but in Houston, we call it snow. Mike and I drove separate and I followed him as he decides to go through the Med Center -- right by TCH, already decorated for Christmas (it was the quickest route home...). I tried not to cry, but it didn't do so good. Sophie announced she missed Johnny, asked why he had to die and said she thought he was always going to live and be okay. I agreed with her and told her everyone thought the same thing. The harder I cried, the harder it snowed. This time big fluffy flakes we don't normally see here. The last time it snowed in Houston was Christmas Eve 2004, 5 months before Johnny was diagnosed. I remember it well. Everyone was at my parents house and the kids were going crazy -- we all were -- it was snowing!!! WOO HOO!

Tonight Sophie was beside herself with excitement -- this was the first time she remembers seeing snow (in 2004 she was only 2). Then it hit me. I said, 'this is Johnny's 'big sign', letting us know he's okay'. But I still cried. Like the day before, the harder I cried the harder it snowed and the flakes got even bigger too. When the snow let up Sophie said, "Johnny's just filling up his bucket" and then it would start snowing again -- crazy hard too -- I'd guess you could call it a "Texas Whiteout" (you could still clearly see in front of you).

Yesterday was in the 60's -- and all last week and really, all through fall, the temps never dropped much below 50 for more than a few hours. Tomorrow's forecast as well as the rest of next week will be back in the 50's and almost 80 by the weekend. But today it decided to snow.

Christmas Eve 2004 it snowed and everyone was happy and healthy (no cancer) -- then it didn't snow until now -- 4 years later, and I like to think that we are all healthy (no cancer) and on our way to being happy. someday...

(.... it still sucks big donkey balls though!)

LIFE AS I KNOW IT, IS OVER...

2008-12-10T21:15:00.011-06:00

Joey is 13... YIKES! I can't believe it -- I used to ask 'him what happened to my baby?', but then I finally figured out he ate my baby. Mike and Joey share clothes and shoes -- but it won't be long before Joey is giving Mike hand-me-downs. He was very specific about having a BIG family birthday party, so that's what we did! Joey was the first grandchild on both sides, way before anyone else -- so this is what a 13 year olds party looks like in our family:

I'm pretty sure the kids had a great time

A house full of family

Tessa LOVES the doodles (and I mean, LOVES them)!

I was nervous about letting the doodles run free with all of the little ones around -- I didn't want it to look like Mutual Of Omaha's Wild Kingdom -- you know, the dogs taking the kids down -- and everything happening in slow motion. As we let the dogs out to 'run free', they became the hunted and were chased by kids screaming, "DOGGIES!!! DOGGIES COME HERE!!! DOGGIES I WANT TO RIDE YOU LIKE A PONY!!! DOGGIES DON'T RUN AWAY!!!" Both dogs hauled ass and and ran for cover. They got a little taste of their own medicine... it's good for them.

The following weekend Joey wanted a paintball party with all of our friends, obviously it was a hit. He invited his best friend Joseph -- who had never been before, but we knew he'd have fun. I caught a glimpse of him as he was 'preparing for battle' and I could see the fear in his eyes -- he was white as a ghost -- you couldn't even see his freckles. Turns out he loved it and wants to do one for his birthday party.

Mike taking money from a baby

Preparing for battle -- Joseph is the kid staring at Mike, nervously wringing his hands

Ellie. Cute as a button, but put a paintball gun in her hands and she's out for blood

Goodbye Aunt Katie

2008-12-09T21:53:00.003-06:00

Today we buried my great aunt Katie. She was my grandmother's only sister, and her youngest sibling. The service was held at St. Rose this morning, and then aunt Katie was laid to rest at the small cemetery where her parents are also buried. I think she would have been happy with both services.

Aunt Katie was a very kind woman. She will be sorely missed and her passing is very sad, but it also marks a significant event for our family. After my grandmother, Sarah (Colonnetta) Romano, passed last February aunt Katie was the last remaining member of the first generation of the Colonnetta family raised in America. I know that the ties that bind the Colonnetta family together are strong, and will remain so, but sitting in the church today I couldn't help but think that we were not only saying "goodbye" to Katie, but also to a whole generation, and a significant link to our roots.

I also have decided that I'm tired of funerals.

REALITY BITES

2008-11-24T20:11:00.005-06:00

The doodles, excited to be with us and at home for a few hours.

Sunday marked two months since Johnny passed, in some respects it seems like it's been forever, in other ways, it feels like yesterday. Most of the time I can't even understand what happened to us or what's going on, but I'm learning this is our new reality.

When hurricane Ike hit I didn't have A CLUE what it was like to be on the 'outside'. Texas Children's had water, electricity, cable and wireless Internet. The day after Ike, Mike came to visit Johnny and I at the hospital, I expected to have our usual 'shift change', but Mike looked at me like I was crazy and said, "We're not switching out, I just came to tell you I'm taking the kids and dogs to Kathleen's house until Houston is up and running again." I didn't leave the hospital until Johnny passed away 10 days later and our life was far from normal -- my parents were the only people we knew who had electricity (most hotels didn't even have that much!), so that's how we ended up on their doorstep.

In a way, Ike was a blessing for us because we were forced to be with people --specifically family. Not that we force ourselves to be with our families, but the house in Galveston is 11 miles from the thriving metropolis of Galveston proper and 80 miles from our family -- who we really needed the most. If Ike didn't hit and Johnny passed, we would have gone back home and I know I wouldn't have gotten out of bed, showered, or gone past the driveway, let alone 'socialize' with people 11 miles away. This used to be our old neighborhood, so we have all the same friends and every person in our family is a 10-30 minute drive -- max. As much as I know we would all like to be 'at home', we really needed to be with family and friends the past two months.

Cooper checking out the kitchen...

We've always had intentions of moving back to the Island, and decided the best time would be during Christmas break so the kids can start the new semester in Galveston. Our house still isn't even close to being livable. Luckily though, we will stay at my parents beach house in the same neighborhood while ours is being fixed. To be honest, fixing the house and dealing with insurance hasn't been a huge priority. But as it gets closer for us to move back, we are focusing on the mountains of paperwork and adjusters we've been ignoring for so long. That's when it occurred to me -- reality bites.

This is the boys room. It was hard for Joey to walk in the room he shared with Johnny for so long -- they always shared a room, even when they didn't have too. He shed a few tears when he saw the shape it's in.

We've been lucky enough to avoid as much reality as possible -- staying with my parents, yes, my mom does our wash, the doodles are with Mike's mom, but nothing says, 'this is your new reality', because it's all temporary. Moving back home seemed so far away and as long as we avoided fixing the house, our 'temporary' life could last a little bit longer. Sunday Mike and Joey went to the house to clean up the yard. I decided to go and drop off a few things, and assess the inside of the house again.

As I drove closer to the Island I noticed the boats that were lying on the side of the road were gone -- and both sides of the new causeway were open, as well as a few more restaurants and shops. Once on the Island, there are still boats on top of cars and in parking lots, but for the most part it looks like Galveston is on the road to recovery. On this trip I realized things were different and we were one step closer to moving back, without Johnny.

Cooper is in Kindergarten and is Sophie's best friend. When he saw me pull up, he ran to me and gave me a big bear hug!

At the house I saw Mike, Joey, Kendall and Cooper chopping down oleanders. Kids were riding bikes and skating down the street. Neighbors came by to say hi and ask when we were coming back. As I unloaded the car, I tried to find a place in the house to put everything. It was too overwhelming, so I just threw it on the floor. If you don't know by now, I have issues. I need to have things in complete order, I hate piles, I label just about everything with my handy-dandy labeling machine and like everything in it's place. And, well, our house is the exact opposite. I know it can be fixed and cleaned up -- shit, I didn't lift a finger to get the house this far -- it was Mike, Rhonda, David, Wes and Mike's Mom with her friends/clean up crew from her office.

I wish the storm washed away our house. I mean, I am grateful we still have something to go back to, really. Believe it or not I can look past the destruction and mess, I actually envision the house back to normal. That's when reality bites. I can see us six months from now sitting around the dinner table with one empty chair, or getting ready for school without Johnny yelling at us to hurry up, I see an empty driveway with no ramps or little skaters or bikers, I see an empty bed and dresser, I see Johnny's peeps patrolling the neighborhood without him. It is our new reality, much sooner than I wanted. I don't like it one bit. It sucks the big one.

That's why I wanted the house to wash away. We would get to start completely from scratch -- everything would be new and the everyday reminders of life without Johnny would be a tiny bit less in our face. Now when we go home I will think about the last time I saw Johnny in his bed, or in mine, or walking up the stairs, or finding something to eat in the pantry or running through the yard. I am already painfully aware Johnny isn't with us anymore, I just wish I didn't have to be reminded of it over and over again.

BIG WEEKEND part 2

2008-11-19T23:16:00.017-06:00

FINALLY! right? Okay, I didn't update as soon as I though I would... here are a few more photos from The Johnny-palooza Weekend:

I love this photo.

It is surreal to walk around and see your name on the backs of complete strangers. There was a design from a company named Volcom that also did a Johnny Skate Jam shirt -- they just keep popping up!

Zane is one of Johnny best friends who decided to help out with the dunk tank. Or at least I hope it was his decision!

Aimee was Johnny's teacher last year and organized the Super JR 'This Is How We Roll' photo shoot at the school this fall.

Mike and Sophie

This Fallen shirt can be ordered online at Zumiez.com, along with the hoodie and shoes.

Sunday afternoon was the Rock The Cradle contest our friend Barry with the help of World Cup Skateboarding organized. All proceeds went to the Johnny Romano Foundation --

Everyone doing a 'shout-out' to Johnny!

A few of the Vert Pros.

Mom and Joey

This was a little boy who met Johnny at a local skatepark. They exchanged phone numbers and have been friends ever since,. Even though they didn't go to the same school, he still followed Johnny's story and when Johnny passed his friend told someone on his school bus and the whole bus started crying.

This was part of the contest -- who can get the highest out of the bowl or cradle. From this photo, you can't see the bottom of the bowl, but trust me -- it's waaay down there. I went to the edge of the bowl before the contest started and felt butterfly's in my tummy.

One of our friends, G.Scott took these photos -- I think they are so awesome with the skyline in the background. Perfect weather too!

Lincoln Ueda popping out of the bowl.

More cool shots of the contest by G. Scott Imaging.

This thing is what they call the 'cradle'. It has height markers at the top of the inside measuring 10 feet+, most guys skate over that too! It's the equalviant of a big wave at Waimea or Pipeline.

After the Rock the Cradle event, there was another fund raiser at the Continental Club. A bunch of really great bands played while the silent auction was happening. Liz won a John Ogilvy painting of a sunset, waves and Johnny's skateboard that reads "Roll Forever".

This little guy won the deck during one of the many raffles that night as well.

Just a cool shot...

A crazy crowd as Sugar Shack played -- oh, wait -- that's us....

More raffle winners.

Stefanie is the drummer of Sugar Shack (she moon-lights during the day as a reading teacher...), not only does she totally rock in her chiffon dress and high top Chuck T's, she also organized the entire evening at the club.

I see crazy people...

Silent Auction items...

A classic car club also showed up at the club. Mint vintage VW's...

Mike's bro-friends -- David, Scott and David.

My coach from the Marathon last year runs marathons like I go on shopping sprees. Holly, her husband Josh, and son Jacob (he's 10 years old!) ran a half marathon in San Antonio. Holly had special team shirts made for her crew of about 10, in memory of Johnny.

Holly and family!

Holly and Jacob also came to the Johnny Romano Skate Jam for Make A Wish.

BIG WEEKEND part 1

2008-11-11T20:49:00.008-06:00

This pretty much says it all.

A packed house again this year

The BEST BOOTH EVER!

...was actually one of the most popular booths as well.

Sophie and Emma worked the crowd like they owned the place.

Jim at the dunking booth...

...looks like he got Jamie!

The most anticipated part of every event is always the product toss. Everyone loves SWAG!

Emma caught this shirt. It says 'Ro Sham Bo Down Low', which Joey and Johnny learned from their Aunt Krissy and Uncle Craig. It was always a 'location joke' for them, so when Emma caught a shirt with 'their' slogan emblazoned on the front, Kristin knew it was Johnny's way of letting her know he was right there with them having a great time too.

This is my niece Tessa -- every time she heard Johnny's name she screamed along with the announcers. She totally loves Johnny -- and had a ball at the event honoring her cousin. Although I'm not sure I will let her go to Mardi Gras by herself until she's at least 25...

The three little cousins. Even though Tessa is almost the same size as Sophie, she insists on treating her like she's a 'baby'.
This was from our friends in Austin a few weekends ago when they walked in memory of Johnny and raised money for 'Light The Night'-- a Leukemia Lymphoma Foundation event. They even made their own 'team' shirts!

This shirt was made by a company called Elwood, based in CA. The Longhorn is part of their logo and under it, their name -- but for the Make A Wish event, they replaced the Elwood brand for Romano in memory of Johnny.

A company called Volcom also did a Johnny Romano Skate Jam shirt as well. I'm not even sure I can put into words how incredible this weekend was. Amazing, phenomenal, extraordinary, don't even scratch the surface. Photos and links might help describe how spectacular the weekend was.

SUGAR SHACK!

2008-11-07T09:50:00.007-06:00

One of the many benefits this weekend held in Johnny's Honor is the one Sugar Shack organized -- SUNDAY -- Nov 9 at the Continental Club, 3700 Main. This one is extra special because Sugar Shack hasn't played together for over 5 years so they decided to come together just for Johnny. A bunch of bands and artists will celebrate Johnny's life and raise money for The Johnny Romano Foundation -- for research, advocacy and education (go to the Donate Now link on the far right hand side).

Barry Blumenthal also has an event on Sunday at the Jamail skate park in Houston -- Rock the Cradle -- the worlds largest bowl/cradle competition with lots of pros coming to show off their skills.

Mike and Barry did an interview with the local Fox station yesterday afternoon. They looked so cute together in their matching outfits! -- Actually Mike came home and the first thing he said was -- not, "it went really well" or anything but -- "Barry and I had on the same outfits..."

MAW Preview

2008-11-05T21:24:00.004-06:00

This coming weekend will be a busy one for us. Saturday is the first annual Johnny Romano Skate Jam (or the 12th annual Texas Skate Jam) for Make-A-Wish. This is an event that meant a great deal to Johnny, and played a huge part in making the last three years of his life so amazing. Johnny loved that he got to show up early to the event and skate with the pros. All of the skaters on the Real team made him feel like one of the guys, and really pushed him to go for it. He wasn't in awe of anyone, but I could tell he really wanted the guys to think he could skate well. I think that knowing he would have this one chance each year to impress those skaters really motivated him to progress. To that end Johnny skated almost every day that he felt well, and always showed improvement, but it was this past spring that I could tell things started clicking for him. Instead of slow steady progress he began making big leaps. All of a sudden he was surprising me with something almost every time I watched him skate. He was going for bigger tricks, and he almost never fell (he really did have cat-like reflexes). I know he was looking forward to surprising his buddies on the team the same way.

Since Johnny can't skate at the MAW Jam this year I thought I would post a few pictures from the last few months before he relapsed. There are even a few pictures taken at the Galveston skatepark the day before he started reinduction. I will always wish I had taken more.

FRONT PAGE

2008-11-02T12:02:00.003-06:00

A reporter from the Chronicle, Lisa Gray, did a really nice piece in this mornings paper.

HAPPY HALLOWEEN

2008-11-01T11:35:00.003-05:00

Sophia found her costume over a month ago. She insisted on being a Vampiress 'with blood coming out of her mouth'. Here is a photo of the first pouty vampire...

Joey, on the other hand, waited until two hours before we hit the streets to decide what he was going to be. We went to Walgreen's looking for a couple of masks -- one for Joey:

...And one for his friend Joseph. They have been friends since they were about 5, so I guess they have a 'special' bond of sorts... Joseph had a great time with the Hillary mask -- and he's such a good sport too.

We also carved pumpkins the night before -- 3 -- one for Joey, Johnny and Sophie.

The whole crew.

The kids had a great time dragging us around the neighborhood. Needless to say when we got home the moms insisted to 'get their drink on'.... HAPPY HALLOWEEN!

SLIDE SHOW

2008-10-27T13:44:00.002-05:00

I made a slideshow of Johnny's amazing life and my cousin Greg put it on the web for us. It's probably too long for the average person but it is everything from the moment he was born through his birthday weekend before he went into the hospital May 26.

MOMENTUM

2008-10-22T20:39:00.003-05:00

This was sent to me today from one of Johnny's teachers he had last year.

I guess every parent who loses a child has the fear that the child will be forgotten. I don't think that is what will to Johnny. It seems like suddenly is more popular than ever -- kind of like Elvis or Curt Cobain. And I am totally fine with his popularity, it tells me Johnny Romano will always be with us, still making a difference.

Mike and I want to start a foundation in Johnny's name, having all funds go to research. Tomorrow I am meeting with Rene (she's so awesome) to discuss how to establish the foundation and what it will entail to get it off the ground. Of course, I will always keep you guys posted...

"So, how you doing?" -- the dreaded question that is asked of us many times a day. Usually my answer is 'Meh', or pretty good. Luckily people don't know what to say after that so the conversation usually turns to another, more happier topic. I'm pretty busy tying up loose ends all day and running errands and hopefully start writing thanks you's. If it weren't for the little stuff that needs to be done, I'm not sure I would get out of the house, much less take a shower.

Most of the time I'm okay with the fact Johnny's not with us anymore, then something will trigger me and I fall to pieces. I know he was sick, really, really sick and there were times when things were bad I would pray to God that if he really wanted Johnny, to please take him so he wouldn't have to endure such pain. I don't blame God, or anyone for Johnny's passing -- I totally believe there is an afterlife and we all have our Angels that watch over us. I think what makes me cry the most is all the shit he had to go through -- that part tears me apart. I pray to Johnny every night that I hope he forgives me for making him go through such rotten shit for so long.

Tuesday was a bad day for me. I couldn't stop crying and I just couldn't understand any of 'it'. Why did he have to go through so much pain the past 4 months -- all I could think about was watching him take his last breath and watching his heart beat for the last time. How horrible the entire process was -- why does this have to happen in such an ugly way? I had to go to Texas City for some Ike aftermath paperwork and I cried the entire way -- over an hour. I was in the parking lot at the location and tried to compose myself before I walked into a crowd of FEMA people.

As I sat there I listened to the radio -- an oldies station that Mike always listens to. Usually when i get in the car the first thing I do is switch the radio station, then put on my seat belt. Except this time. I heard a Beach Boys song California Girls, which wasn't one of Johnny's favorite bands or songs, but lets face it -- he's a red blooded American boy and like California Girls. So I kind of chuckled to myself, thinking that it was Johnny's way of telling me he's right here with me. Then another song came on, something I have never heard before -- not sure of the title but the lyrics talk about a guy named Jim and his Superman cape. That definitely caught my attention -- the song also had Jack's name (Jim's son) and the state of Alabama (that's where Jamie Thomas is from). So I verbally asked Johnny if this was him talking to me and was with me.

The next song that came on was Some Kind Of Wonderful. I was familiar with the song but never really listened to the lyrics until now. I'm totally certain whom ever wrote the song, wrote it about the love of his life -- a girlfriend or wife -- but the words could fit the way Johnny felt about me (or so I like to think...). It seemed like every question I asked Johnny he replied with a song that if you listen to the words, could be Johnny's reply to me.

Sometimes it was just a line or a verse but it still comforted me enough to get out of the car. I can't remember the questions I was asking but I remember the songs that followed. Everlasting Love, Miss You and Free falling. I do remember the last question I asked -- was he happy with our idea of a Foundation for leukemia research, and the songs that followed were Come Together, You Ain't Seen Nothing Yet, and his last song was Iris (about missing someone who has passed).

I stopped by the cemetery and it looked beautiful. Uncle George pays a landscaper to plant seasonal flowers and to cut the grass -- so where Johnny's body is of course looks better than any other plot. And who names all these places anyway? Every term used to define that place is ugly, so I decided to call it the Romano Family Garden, because that's what it looks like -- a beautiful garden. I know Johnny isn't really at the cemetery, but it still felt good to stop by and say hi to him. Of course I lost it and had a hard time composing myself, so I hoped back in the car to leave. When I got in AC/DC was playing -- one of Johnny's favorite bands, so I quickly changed the station and it was another AC/DC song -- must be a coincidence -- so the third time was a charm and YEP, you guessed it another AC/DC song. I couldn't help but laugh.

I was certain Johnny was with me all day long, helping get to the next hour of the day. for the rest of the day it was just random songs playing until I picked up the kids. As soon as Joey stepped in the car one of Johnny's favorite songs came on and Joey commented that he wished Johnny were here to listen to it with us. I said, "Oh don't worry, he's here alright!". Then some random comment about putting 'lipstick on a pig' came on, this is one of Johnny's favorite sayings -- along with 'you can't polish a turd'. Thanks Kristin!

We laughed and remarked about how it always made Johnny laugh, then AC/DC came on. After that came the Ramones. I knew it was Johnny saying 'Hi' to the kids and welcoming them after school to talk about the day. I told Mike about my day and he was less than impressed. All he said was, "Huh. Maybe it was Johnny", his sentence reeked of skepticism. I think it's the 'psychologist' speaking and that science tends to think there is no such thing as divine interventions. Or maybe he was jealous Johnny spent the day with me -- who knows.

Okay, here comes the paranormal mumbo jumbo. We went to bed and I said my usual prayers to Johnny and thanked him for staying with me, then fell fast asleep. About 4am I woke up in what I thought was a dream, I was looking down at myself and I was snuggled up with Johnny. I was so happy all I could say was "I love you, I love you, I love you". As I held him, I could actually feel his weight, like I was really holding him in my arms. I ran my fingers over his and saw how beautiful his skin looked. The connection seemed to have lasted a very long time, but never long enough. We talked a little, but not using verbal words, just thoughts -- most of which I can't remember and then he told me it was time for him to leave. I begged him to stay, but as I looked down to snuggle him he was gone. I was so happy. I looked up and saw him leaving with a few other people and then I woke up.

It seemed so real. I could still feel his weight pressing against me snuggled up next to my stomach like we did so many times before. I haven't told anyone yet -- so why not tell everyone at once! To me it was a real experience and perfect ending to a perfect day. I'm sure a lot of people will try and discount what happened, but I don't care. I guess you could say I was grieving and tried to find something when there really wasn't. You could say that when Johnny left, it looked like he was in line boarding a flight -- of course a few days earlier we flew SWA -- so that must be the connection. Whether it was real or not, it comforted me and helps me have more "I'm okay with it" moments than "what the hell just happened the past 4 months?".

We're Back

2008-10-19T22:28:00.002-05:00

We got back Saturday night from a week in California. Julie and I really needed to take the kids and go do something fun for a little while. We really did have a great time. We got to see some old friends, and made a few new ones. We also hit a couple of amusement parks during the week, while school is in session. That was really cool, but I was still really surprised at how many kids were there. I'm sure Julie will post a few pictures.

The trip was good medicine for us, but it was tough being there without Johnny.

The Johnny Romano Skate Jam For Make-A-Wish

2008-10-09T20:00:00.004-05:00

How cool is this?!?

Johnny Lives On - Roll Forever!

TEXAS SKATE JAM FOR MAKE-A-WISH RENAMED IN HONOR OF JOHNNY ROMANO

(HOUSTON, TX) – October 6, 2008 - Southshore Distribution and Fallen Footwear are proud to announce that the annual “Texas Skate Jam For Make-A-Wish” has been renamed “THE JOHNNY ROMANO SKATE JAM FOR MAKE-A-WISH” in honor of 10 yr. old skateboarder who passed away Sept. 23, 2008.

As skateboarding’s largest and most well-known charity event, The Texas Skate Jam has raised over $400,000.00 for The Make-A-Wish Foundation since it’s inception and will continue to raise money for the charity under its new name.

“Damian and I met Johnny in 2005 and felt an instant connection with him. He was an everyday skateboarder that was facing a life-threatening illness with the greatest display of courage we’d ever seen. He truly embodied what the Texas Skate Jam was all about and we’re stoked to have the event continue in his namesake.” - Jeff Taylor, Event Co-Chairman

“It has been a privilege to get to know the Romano family and I’m thankful for the opportunity to get more involved with this special event. Johnny has been an inspiration to us all and renaming the event in his honor will hopefully help keep that inspiration going.” - Jamie Thomas

“We’re honored and stoked to have Johnny’s name associated with such a great event.” - Mike Romano, Father

Over 50 top professional skateboarders will travel to Southside Skatepark in Houston, TX on November 8, 2008 to compete in a series of “best trick” contests to support the cause.

Sponsors of the 1st Annual Johnny Romano Skate Jam for Make-A-Wish include Fallen Footwear, Southshore Distribution, Zumiez, KR3W clothing, Spitfire Wheels, Zero Skateboards, XingTea, Southside Skatepark, Independent Trucks, Transworld Skateboarding Magazine, Thrasher Magazine and Spotlight Productions.

For tickets and general event information, go to http://johnnyromanoskatejam.com

# # # #

ABOUT MAKE-A-WISH FOUNDATION: The Make-A-Wish Foundation grants the wishes of children with life-threatening medical conditions in order to enrich the human experience with hope, strength and joy. For more info, go to http://wish.org

ABOUT SOUTHSHORE DISTRIBUTION: Southshore Distribution is one of the largest distributors of skateboard hardgoods in the United States. Southshore’s President, Damian Hebert, is the founder and chairman of the Texas Skate Jam For Make-A-Wish. For more info, go to http;//skatenet.com

ABOUT FALLEN: Fallen is a footwear and apparel brand dedicated to skateboarding.
For more info, go to http://fallenfootwear.com

CHAOS GOOD -- ROUTINE BAD

2008-10-06T23:06:00.002-05:00

To say the past 2+ weeks have been chaos for us is such an understatement it's pathetic. It has been the darkest days for our family, but we are surrounded by incredibly loving family and friends who have helped ease our pain.

During the chaos of Ike's aftermath, we had the difficult task of planning Johnny's funeral. Last Tuesday we enrolled the kids in school and they seem to be adjusting very well. Sophie has Johnny's Homebound teacher from a few years ago, and Joey is back with all of his friends he's had since he was in kindergarten. Finally, a little comfort and stability. I guess the chaos has kept our minds busy with mundane tasks and details, but as we slowly get into a routine it starts to sink in Johnny isn't part of our routine anymore.

It's so hard to understand, I can't even wrap my mind around it. He wasn't even a kid, he is still a little boy, practically a baby -- barely ten years old -- he just got into the double digits. Simple things like a child's birthday party nearly brought me to my knees. I watched an adorable little boy smile and say 'hi daddy!' to his dad and I was so jealous I had to look away. Our long time friends have 3 kids all about the same age as ours and to watch them play together tore me apart. What do I say when people ask me how many kids we have? Do I tell them three or two? Either way it sucks. I think the more things settle down, the harder it will be -- at least for me. Hopefully our time in CA will delay facing a routine one more week.

It's seems insane to try and think of the 'good things' about Johnny passing. As I sat next to Johnny day after day, it was hard to remember what it was like when he was well, but now when I think of him, that is all I can think of, not the 'sick Johnny' that was bed ridden for 121 days. A very good friend of ours had a dream the other night, and she told us she saw Johnny in heaven playing croquet with all of the other children in heaven laughing and having a ball. I can't wait to see him one day doing just that and we are all together again.

So, What's Next?

2008-10-04T22:25:00.002-05:00

When I think back to everything that has happened I can't believe its only been eleven days since Johnny passed. It seems so long ago that everyone was here for the funeral, but it was only last weekend.

What's next for Johnny? That may seem like a strange question, but Julie and I have been thinking about it a lot. There are people all over the world who have followed Johnny's fight against leukemia, and many have been moved to action by his story. We want to keep that momentum going if at all possible, and have decided that we will start a foundation in his name to support the search for better treatments, and possibly a cure for childhood leukemia. We also have some ideas on how to help kids get through the "experience" of being sick for extended periods that we want to explore. Many have already donated to help with Johnny's medical costs, and once those expenses have been met any additional funds will be used to seed the foundation. I will post more information on as we flesh out the details.

So what's next for us? I've been down to Galveston a few times to meet with insurance adjusters, and start cleaning up a little. It's pretty depressing down there right now. It's somewhat strange to have a Red Cross van stop by the house and ask if I need a hot meal or cold water. Galveston is really only a short distance from Houston, but it is a world away regarding the damage and devistation done by Ike. My house is by no means ok, but there are many on the island who have lost everything. I consider myself lucky to still have a home. The downstairs is a total loss. Everything will have to be torn out since there was salt water up to the top of the doors. The main living area upstairs did much better, but there is more damage than we initially thought. The roof held up well, but water came in under the eaves in several places, and through most of the windows. Much of the ceiling in the boy's bedroom and kitchen will have to be torn out, along with all of the flooring in both of those rooms. There is also quite a bit of paneling under the windows that is showing water damage and will need to come out. That work will start next week.

Until we can move back in full time we will be staying with Julie's parents. They have a very nice home, and luckily have a "room mate" type floorplan where the guest bedrooms are on the opposite side of the house from the master. We have enrolled the kids in school up here, and they seem happy to be able to spend some time with their old friends. Joey has become especially popular all of a sudden, which is fun to watch.

Julie and I will probably spend next week working on the house, or at least cleaning it up, and then we are taking the kids to California for a week. We will spend a few days with my dad, and then the middle part of the week down in San Diego. We may get to see some old friends, but it will be nice to spend some time alone as a family. Maybe hit an amusement part or two, you never know. After that I will be back at work and things will slow down a bit.

At this time we're not really sure how long it will take to get back home full-time. Most of our friends are already back, and a few of the schools are starting back up on the island next week. I'm definitely home sick already, but it will take a while before the west end of the island is back up and running. Julie's parent's vacation house in JB sustained very little damage, and should be livable as soon as Jamaica Beach has water and electricity back up and running. That will give us a place to stay while working on our house, and the Battens have offered the house to us if we want to move back down before ours is ready. That's a nice option, and it will really just depend on how the kids are doing in school up here, and when Julie is ready.

Right now it's just one day at a time.

Onward still.

Mike

SO SPECIAL

2008-10-01T10:26:00.004-05:00

A lot of people think Johnny is special, especially us -- but it's hard for Mike and I to wrap our heads around why he was so special to complete strangers. He has that sparkle in his eye that always came through and touched everyone he met. Chicks love him.

I distinctly remember his kindergarten open house with Mrs. Tucker (she had Joey a few years earlier, so she probably thought Johnny would be a snap...) -- she pulled Mike and I aside and with a very serious tone told us "He's probably the smartest child I've ever had in my class, but you will never know it by looking at his report card (mostly B's and a few C's). In all my years teaching, I've never seen anything like this before, the girls fight over who will sit next to him during circle time and who gets to do his school work. And he lets them do it too!! I just had to put a stop to that right away, because he can't rely on women to do his work, he needs to learn to be a man..." Mike and I got the biggest kick out of what Mrs. Tucker said that night.

Obviously he was special way before he was diagnosed.

I felt the amazing moment Johnny was conceived. He was born on his due date. When I was giving birth to Johnny my epidural wore off so I also felt the incredible moment he was brought into this world and it was the most amazing feeling ever -- it literally didn't hurt and I instantly told Mike I wanted to do it again. After the nurses scooped Mike up off the floor, he told me to wait a few years before we made that sort of decision. Johnny was our only baby we didn't find out the sex before he was born -- and we were convinced he was a girl. We were so sure we had a ton of girl names but only a few boy names. Just a few hours before we left the hospital we decided to name him Jonathan Michael Romano.

His favorite all-time movie is Peter Pan. Mike's mom used to ask him when he was about 3 and 4 years old, when he was going to be a big boy, he always told her "I don't want to be a big boy. I don't want to grow up!" He loved being a baby (and loves babies) and still drank out of sippy cups -- not the kind with the plastic thing inside to prevent drips and they didn't have handles, but they still had lids and resembled the sippy cup style.

He wore bathing suits 24/7 until about the 3rd grade. When we met families who had pools I told them Johnny wasn't trying to throw hints -- he just likes to wear trunks -- even during the winter. The only way we potty trained him was to take away his trunks. It took all of about 30 seconds and viola! No more diapers! He loved to go commando.

Johnny was diagnosed on Thursday, May 26, 2005. When he relapsed and started treatment, and was readmitted because of sepsis it was May 26, 2008. He started and ended his 121 day stay at TCH in ICU. He passed away in our arms on September 23, 2008 which was supposed to be the last day of treatment had he not relapsed. He was buried September 27, the day Galveston declared it "Johnny Romano Day!".

It sounds to me like he had this whole thing planned. Just wish he would have consulted us beforehand... I miss him so much. I feel blessed I was chosen to be his mommy, even if his visit was only to be a short one.

Farewell Johnny

2008-09-28T01:25:00.002-05:00

We will miss you very much.

Planning

2008-09-25T18:34:00.002-05:00

Planning a funeral is probably not easy under the best of circumstances, but this is definitely the hardest thing I have ever done. It's not hard because the decisions are difficult, it's hard because they are decisions a parent should never have to make. I cannot express enough thanks to our family for stepping up, and sometimes stepping in, to make sure that we are able to get through this. Every time there is a question that comes up it seems as though my Uncle George has already anticipated it and provided an appropriate answer or resource to use if needed. My cousin's wife, Rene, has also acted as a personal assistant to Julie and me, making sure that we are where we need to be when we need to be there, and gently making sure that we are covering everything. I honestly don't know how we would manage this without them, or the rest of our family and friends who are helping with all of those other things that would have distracted us from what we really need to do.

I know that if I had been a more practical person I may have made arrangements in advance, but I just could never bring myself to do it. I just couldn't plan a funeral while Johnny was still fighting so hard. To be honest, I'm not sure that even if everything had been in place long before now these last two days would have been any easier.

At this point I think almost everything is ready for tomorrow and Saturday. I hope I am, and I hope that if Johnny is watching he likes what he sees.

Mike

PS. Since we started this blog we have had hundreds, maybe thousands, of messages and comments from people all over the world who care about Johnny. We read, and save, every comment, but unfortunately unless a name is entered in the message or the message is signed we do not always know who has sent it. It is also impossible to (or at least we don't know how to) reply to those comments to the blog. If anyone wants to contact us directly, and would like a reply, you can email us at Triplejms@comcast.net. I would ask that this address only be used by those who would like us to return the message. Otherwise a comment to the blog would be best.

Viewing and Funeral Information UPDATE

2008-09-24T19:38:00.006-05:00

Although we prefer donations made in Johnnys name, if you wish to send flowers the shop we are using is the Heights Floral Shop.

After what has been a very long day I think we have some of the important information about the services nailed down.

All of the following services will be held at:

St. Ignatius Catholic Church
7810 Cypresswood Dr.
Spring TX 77379

Friday, September 26th:

4:00pm to 6:30pm - Viewing

6:30pm to 7:00pm - Rosary

7:00pm to 8:00pm - Vigil

Saturday, September 27th:

12:00pm to 1:30pm - Funeral

Burial and reception times to be announced

Johnny will be buried at Forest Park Lawndale Cemetery, 6900 Lawndale St., Houston TX 77023.

In lieu of flowers, donations can be made in Johnny's name at the following:

Make A Wish Foundation

Gulf Coast Regional Blood Center

Texas Children's Hospital

If you are able to, please join us in celebrating Johnny's short but full life.

Onward,

Mike

Our new temporary residence will be with my parents until we can figure out what is happening in Galveston. Their address is:

Mr & Mrs Joseph Batten

5011 Coral Gables

Houston, Texas 77069

From a Brother's Viewpoint

2008-09-23T18:30:00.000-05:00

My life has been pretty dang hard since this all started. This is what my life has been like the last few years. As you know, Johnny, my little bro has been though a lot these past few years, and I haven't been having such a dandy time either, me nor Sophie so this is how we got along these past few years. Things started to go down hill for me when I was nine or so and Sophie was a little three-year-old and Johnny was diagnosed with ALL. Johnny and I have a special brother bond to where I can still talk to him now and we've been pretty close our entire life, through the thick and thin, the yelling every now and then, and all that has happened up until now and from now on until forever ends. Ya, that's how close we are! So anyway, Johnny was doing good up until he was seven when he was diagnosed and he was put in the hospital. We had some pretty good times and some pretty bad times, but all in all he had a pretty good life. He was very funny if you got to know him and he was very nice to every one, he loved to skate and surf but liked skating better even though he was a good surfer and he cooked his own food most of the time, and there is so much more I would like to tell you but that is for later entries.

At first it wasn't to hard on Sophie and me and everything was alright for a while until this May when he got sick again and had to go back while I went to Hawaii (and right now I am starting to regret going and wishing I had stayed to spend time with him) and he got to stay in the hospital and lose his hair. But even then, things were alright for us and then came AML. That was when I knew things weren't alright. Things were pretty shaky for a while and Sophie and I were moved around a lot. I had a feeling things weren't OK but I put that thought away. Until today I thought things were going to turn out. Then when Nana and Pops said we were going to the hospital I knew what was going on. I got up as soon as possible and got dressed and we went up. I am glad I got to see him alive for the last time, because he could still feel what I was saying even though he was in a coma, and while he still had that yellow tinge that said he was still alive. after spending some time with him I was sent back to the family room where I stayed for an hour and a half. When ever my parents came back I convinced them to let me go back with the others to say goodbye. When I entered the room I saw him laying in bed with out being hooked up to all the machines and for the first time in along time he looked peaceful. I almost started to cry when I realized that the green skin color meant that he was dead. It was hard to see him, no his shell with out any life and to know that Johnny's spirit was outside of this lifeless body so we can't physically communicate and that made me sad, but to make it worse, every body was freaking out at this and that was harder than anything that I have endured my entire life to try to keep my tears in. That was when I paid my respects before I left and that was the last I saw of him. I think his purpose here was to inspire hope and courage through out this dull and hard world and once that was done then God wanted him back and at leased now he has no pain or anything and we are the ones suffering and not him and he has more family now then he ever did before.

always moving forward,

Joey

The End of Treatment

2008-09-23T16:00:00.003-05:00

Today would have been Johnny's last day of treatment if he hadn't relapsed in May. We have had this day circled on the calendar for almost three years.

At 11:45am this morning Johnny passed from complications related to his AML. He peacfully slipped into a coma early this morning, and passed after being visited by his siblings and grandparents. Although Johnny had been sleeping almost none stop for the past last night was different. He wasn't feeling well, but he was awake almost all night, and was pretty alert. We watched a surf movie, and then watched the ASP pro surfing contest in France live on the internet. I would like to think he was dreaming of surfing.

Julie and I will be planning funeral services tomorrow, and I will post time, date, and location as soon as we have that pinned down.

There is much I would like to say about what we experienced today, but I don't think I can do it now. This has been the longest day of my life, and I am exhausted. I do want to thank the nurses at Texas Children's Hospital, and especially Dr. Dryer, for treating Johnny with the utmost respect and dignity. The little guy definitely deserved it.

Onward still,

Mike

Times Up

2008-09-22T17:23:00.002-05:00

Although Johnny's liver functions are slowly getting better we are still pretty much in the same place we were this time last week. His liver is still very enlarged, and his bilirubin is very elevated. There were also some indications from the GI scope that blood is being routed around his liver indicating that there is some blockage inside the organ. As we have noted before; the liver is a very resilient organ, and given time almost all of these problems will probably correct themselves. The problem is that we are out of time. Over the weekend we noticed a small but steady increase in his WBC. It's still very low, but definitely increasing. On today's lab results we discovered that he again has cancer blasts in his peripheral blood indicating that the leukemia is once again active. They had scheduled a bone marrow aspiration for today, but with blasts in his blood the doctors decided to pass on putting him through another procedure. They now know that his bone marrow is active again even without the test.

We are now faced with two choices. The first choice is to start another round of the Clofarabine tomorrow. This is very risky since his liver is already is a state of distress. The concern is that another round of chemo may damage it to the point where he will not be eligible for a bone marrow transplant. If that happens then we are basically putting him through all this for nothing. The second choice is to start "comfort care." That would entail taking him off all the anti-infection medicines and other stuff that may be making him feel bad, and starting him on some meds that will try to suppress his WBC for as long as possible. For some kids this might allow them to go home for a while, but Johnny is too weak for that. He also will need platelets daily, so he would have to remain in the hospital. Right now we don't have a home to take him to, so getting him out of here is kind of a mute point. At this time Julie and I have opted to try the Clofarabine. He will probably start tomorrow, and go for a full five days. Dr Dryer is going to reduce the dose to help with the stress to the liver, but it will still be a risk. Both of us hate to put him through chemo again while he is so weak, but while there is still a chance we can't just give up. The doctors will be monitoring his liver very closely, and if they think we have passed the point where the damage is too great we will stop.

I have requested a 30 day leave from work so that I can spend as much time with Johnny as possible as we manage through this next challenge. My employer has been tremendously supportive over the last four months (hell, over the last three years) while we have been dealing with Johnny's illness, but with everything that is going on I think I have crossed the line where I can keep all the balls in the air. This is a difficult decision for me for many reasons, but I don't think I can put this off any longer.

Onward,

Mike

EXTABATED

2008-09-21T22:12:00.003-05:00

Today around 7pm the breathing tubes were taken out and Johnny seemed very pleased he had one less thing attached to his body.

While I was in Dallas picking up the kids from Kathleen's house, Mike stayed with Johnny. I asked my parents to relieve Mike during the day so he could sleep for a few hours at Ronald McDonald. We weren't sure how my parents would take seeing Johnny in this condition, it's even hard for us and we see him everyday and they were just walking in. Although it was hard to see their grandson in such critical condition, they did really well and enjoyed their time spent with Johnny -- even if he was completely out of it. I was only gone 2 days but I think my parents left a lasting impression on the hospital staff -- everyone called them Nana and Pops and gave them hugs when they left.

While my parents were filling in for Mike today, the doctors decided to place a feeding tube. None of us were very happy about this plan, most of all Johnny. I'm sure it's in because he's been on TPN (total parental nutrition) for months and it is very hard on the liver and right now we need to keep his organs as healthy as possible. The feeding tube goes through his nose (yuck), through his stomach and stops at his intestines. I guess the upside -- if there is one -- is that it takes the burden off the liver and will make his gut start working again. Once he gets his snap back I know he will want it removed asap -- but until he can eat well enough to keep himself healthy, I think the tube has to stay.

Tomorrow the doctors will see if he's strong enough for another procedure -- a bone marrow aspirate -- to get some idea what's been going on the past 3 weeks since his last dose of clofarabine. At this point I would LOVE to wait -- he's been through SO MUCH, he's so weak and tired, plus all of sedation -- I vote to take a break. I'm not sure it will change anything as far as treatment goes. If there is more cancer or less than last time, he still has to get more chemo. I will talk to the doctors tomorrow to find out exactly what is the purpose of the BMA.

GI Scope

2008-09-20T23:24:00.003-05:00

Johnny has been doing a little better the last couple of days. Because his liver is not functioning properly the doctors have been lowering the doses of some of his meds, and tweaking others. The result is that although he has still been sleeping a lot, he seems a lot more comfortable. His vital signs have also improved quite a bit, probably due to the lowering of his morphine dose. He is really sensitive to that type of pain medication. He has also pretty much stopped throwing up buckets of blood. I think that's better. What hasn't improved is the size of his liver. His stomach is still very distended. His bilirubin numbers are getting better, so there is some indication his liver is healing.

Because he was throwing up so much blood a couple of days ago the GI team was called in and it was decided to scope his stomach to make sure the blood is not coming from his GI tract. Because he hasn't been as nauseous lately the procedure was not a high priority for the OR, but it did need to get done as soon as possible. For various reasons when Johnny's spot came up on Thursday and Friday he was unable to have the scoping done. Today all his counts were within limits, and the doctors had their act together so they were able to get him scoped. It turns out that he doesn't have any lesions that would be causing any bleeding. He does however have very bad mucusitis all the way down to his intestine. The GI doctor, Stephanie Abrams (not from the Weather Channel) doesn't know Johnny at all, but commented on how tough a kid he is. She said it probably hurts like hell just to swallow his own spit, much less his oral meds. I'm starting to think he just has a really high pain threshold. The only thing he really every complains about hurting is tape. I guess medical tape is like his kryptonite. He also a little scared of crab legs, but that's another story. Now that we know the bleeding is not coming from his stomach the doctors will focus on his sinus. The good thing is that although a bloody nose can seem like a lot of blood the vessels in that area are so small that you can't really bleed to death from your sinus.

The GI scope required general anesthesia so Johnny was intebated for the procedure. When they were done and removed the breathing tube he was having a hard time breathing on his own, so they replaced the tube while he was still out. At this time Johnny is back in ICU, and is intebated and sedated. The machine settings are very low, and Johnny is already taking more breathing a little faster than the pump, so the doctors will let him rest tonight, and then will try to remove the tube again tomorrow. He does seem to be ok, but I hate seeing him on a breathing machine. It like he's on life support. I guess he is on life support. The worst part though is that he has to be very sedated. To the point that he is uncontious. Even though he was sleeping a lot anyway I still want to be able to talk to him.

Onward,

Mike

15th = New Washing Machine

2008-09-19T00:52:00.005-05:00

Yesterday Julie and I celebrated our 15th anniversary! Although the day this year was a little different than usual we were together, which was the most important thing. Our life together has continued to be an amazing adventure, and I am thankful every day that I'm going through it with Julie. I love her very, very much.

I'm not sure what the appropriate gift is for the 15th, but Julie has already told me what I'm getting her. Front loading, stackable washer and dryer. Pretty romantic.

BAD TIMING?

2008-09-19T00:52:00.002-05:00

The scope scheduled for mid-morning Thursday was rescheduled for later in the day because we were waiting for platelets . Right before the procedure more labs were drawn to make sure Johnny was running on a full tank -- but a few numbers were off. Labs were redrawn (STAT!) to keep his OR slot but in the short 30 minutes it took to get the results -- he lost his slot and had TEN people in front of him. I guess it's like getting out of line at the grocery store or something....

Hopefully Johnny's counts will make the 'cut' today and he will have the procedure about 9am. Results should be soon afterwards. Mike and I were talking about how fortunate/happy/relieved/blessed we are to have our current team of doctor's -- Dr. Dreyer, Dr Krishna (GI) and Dr. Palazzi (ID) -- all top notch in their field. I know, I know, I always talk about how our doctor's/nurses totally rock but it's the entire package this time -- Mike called them the A Team, hmmm... I wonder who would play Mr T?

Since we heard Johnny's biopsy results a few weeks ago, I've had a hard time keeping it together. I haven't cried or been emotional since his diagnosis in 2005 -- because I knew if I did, I probably wouldn't be able to stop and I needed my focus on getting Johnny well. With our current state of affairs, it's been hard and I am scared. Today I was able to use the Ronald McDonald House rooms on the 4th floor for some much needed rest. The atmosphere at the 'House' is more hotel than hospital -- free private rooms with showers that are available on a first come, first serve basis.

For the first ever, Mike and I decided to break away and use the 'House' facilities -- because, well, it has been days since either one of us had a shower. After a much needed and well deserved shower I stayed at the 'House' and Mike went back to ICU. My goal was to sleep until 5pm -- plenty of time for a good nap. Only I didn't nap -- I obsessed about Johnny (don't ever use the Internet late at night, by yourself, to research medical conditions) and the sucky conversations we've had with the doctors. You know the -- "Can we speak to you in the hall..." or "If he 'codes', what are your wishes..." and the ever popular, "Do you still want to continue treatment..." type of conversations.

There are SO MANY seriously wrong things happening with Johnny right now, but the scariest issue for me is how much he sleeps. He's been asleep since last Friday -- literally straight through. We have a hard time waking him and even harder time keeping him awake just to take his pills most of which he does with his eyes closed. In the past when Johnny was teetering on the edge, he slept a lot -- maybe 2 or 3 solid days straight and on the fourth day just wake up and he's better. So far that hasn't happened.

Today I let it all out. I cried uncontrollably, begged, pleaded and got down on my knees and prayed for Johnny's strength, health and recovery. Religion is a very private subject to me and I don't usually talk about it because I think it's just between me and God. I'm weird, I know, don't try and figure me out. Anyway, I cried so hard I couldn't pull myself together and worried that people in the hall would hear me. I wanted so badly to be with Mike and Johnny, but couldn't stop crying long enough to get it together. Then I started visualizing Johnny healthy, not getting healthy, but strong like he used to be and one of his favorite songs popped in my head. That seemed to help give me strength to pull it together and walk to ICU, thinking about Johnny and playing his music once I got to the room.

When I walked in, things were different. Johnny was awake, alert and even talking -- Mike was already playing music and they were looking at old skating and surfing photos. I know we have to take each day at a time and it may even sound trite, but you don't know what tomorrow will bring, just be thankful for today. I am still nervous about the procedure and I'm not sure what they will find.

What I do know is since Johnny's relapse, people from around the world support, send good 'vibes' and pray for his recovery and I know it's what has gotten us this far. Miracles don't have to be 'parting of the sea' scale, little miracles happen everyday all around us -- something as small as being awake and keeping your eyes open is miracle enough for me.

JOHNNY UPDATE

2008-09-17T17:36:00.009-05:00

In some respects Johnny seems to be getting better, his breathing, heart rate and oxygen levels are awesome. But he's been sleeping since Friday -- that part bothers me. I understand it's important his body has time to recuperate, but still, it's just not my Johnny when he's like this. I think Dr. D feels the same way so we looked at all of his meds -- 27 to be exact -- to find out what we can cut out completely or adjust to lessen the drowsiness effect.

It's been 24hrs since most of the adjustments and he seems to be better -- not awake for very long -- but better. When he is so sedated, Mike and I noticed he moans more in his sleep -- which makes me push the morphine button more, which adds to the sedation side effects. A vicious circle, I know. But all of that seems to under control for now.

Tomorrow is a BIG day. Due to Johnny's mild liver failure and cirrhosis, all sorts of weird things are happening in his GI tract and his eyes are the color of Big Bird. The liver does all sorts of stuff I had no idea it was in charge of -- more than just filtering out last night pitcher of margarita's (oh, how I wish...). Johnny's liver has had a huge burden the past 4 months -- all sorts of heavy duty meds have been filtering through it, not to mention his current medical state.

So the liver is a filter but is also helps with coagulation factors -- or clotting -- which Johnny can't do on his own any more and also works closely with the gall bladder for various other duties (I really should have paid more attention in biology...). The gall bladder produces bile or helps filter the bile or has something to do with bile -- again, I should have paid more attention. I digress ... Since the liver can't help filter or clot stuff, the gall bladder (and possibly spleen? I'm now convinced that planning my outfits for the rest of the week during my high school biology class wasn't such a good idea after all -- but damn I looked good!) are backed up and that is why he is in so much pain, extremely bloated and the color of Big Bird - yellow. So we know his liver is messed up.

Here comes the vicious circle again. As the liver, spleen and gall bladder enlarge it can also cause problems with the blood vessels in and around the stomach. As illustrated above, if things aren't working properly the vessels can break and cause internal bleeding in the stomach and GI tract. That's why it was so scary the other night when Johnny was vomiting real blood -- not old clotted blood, but really fresh, bright red blood in copious amounts -- worthy of the Discovery Health Channel. His daily labs don't appear this to be the case but honestly, with Johnny, who the hell knows. He doesn't like playing by the rules.

To find out if the bleeding is from his gut or mouth/esophagus or nose or from every place in between he has to be scoped tomorrow. Scary shit when you can't make your own platelets and have no immune system, in addition to a very compromised GI tract. What they are looking for during the 10 minute procedure preformed in the OR tomorrow is, actively bleeding blood vessels, ulcers or anything suspicious that might cause these things to happen. They will also pass through the stomach and into the duodenum -- oddly enough, I TOTALLY remember this freakishly weird part of your intestines from biology.

The good thing is while they are scoping him they can also fix him as they see fit and possibly do any biopsies if needed. The totally scary side effects -- besides death -- are he has to be intabated -- a breathing tube stuck deep in his throat -- almost to his collar bone kind of deep. Sometimes after the procedure they cannot immediately extabate -- or remove the enormous tube from his throat. This in itself is a huge risk, let alone the possibility of the whole death thing again and the scope possibly poking something on it's way down or while it's doing it's thing, causing more bleeding -- which could also cause death.

Mike and I are still hoping that the blood was from an unusually, unnaturally large nose bleed due to the low platelets -- due to the hurricane -- hey it's all IKE's fault!!!! Stupid Ike. And that his tummy and GI tract are fine.

Today Mike tried to donate platelets for Johnny but missed the time slot. While he was at Gulf Coast they told him Johnny got 20 directed donations today just at that location!!!! I want to thank the 20 nurses on the 9th floor who donated for Johnny -- THANK YOU GUYS!!!!! That said, we need to have more donations all over the city spread out over time to make sure the supply is there!

WEATHERING THE STORM....

2008-09-17T17:36:00.005-05:00

Our good friend Rhonda made it past all of the Federal, State, Local and Coastie check points and was able to take some photos of the house. If there is one person that could talk their way past security, it's Rhonda.

All of the photos show significant damage to the lower half of the house. For those of you not familiar with Galveston houses, since we don't have a seawall to block the storm surge we are all on stilts. Because there is always the chance of a good storm with flooding, nothing under the house can be insured. Obviously, we don't keep our fine china in the garage, but our washer and dryer are under the house, so we know they will need to be replaced.

Before Rhonda sent the photos she called and gave Mike a verbal report of the damages. Mike listened as she went through everything and at the end, he asked her how the shed looked. I think her response said it all, "was it something free standing?". Yes it was, -- in a lot all by itself next to the house. We have a lot of land with noting on it except the house and garden stuff, so the shed should stick out like a sore thumb. Guess it didn't weather the storm too well -- good thing Mike removed the tractor beforehand.

The only thing we don't know is, how the inside looks and if we have any water damage. Can't tell if we lost any shingles or if we have holes in the roof either. When the officials give us the okay, Mike will be down in a flash to check it out.

Obviously at the bottom of the stairs. The hurricane fence is something Mike and Joey installed so the dogs couldn't get out and bite/terrorize people. The fence seemed to have trapped debris from other yards because nothing you see here is ours.

See. The front almost looks as if nothing every happened.

...Except for all the crap at the bottom of the stairs.

We think this could be the fencing from our neighbors, the Kumpas' house across the street.
Mike was so excited when he saw this photo -- "Look! We have a new picnic table!" I'm not sure how the neighborhood will sort everyone's belongings -- should be interesting though. The chair isn't ours either...
This was Mike's mom's room when she came down to visit --
More stuff that isn't ours -- we studied the debris to figure out who it might belong too. It looks like we have at least two wooden trash containers the one on the far left hand side is painted blue and looked familiar. I asked Johnny if it came from the blue church at the front of the neighborhood and he opened his eyes long enough to say, "That's Dominic's..." and went back to sleep. And you know what? He's probably right too.
This is our front porch. Mike moved the plants -- so no damage here.
This was Mike's garage. We had some exercise equipment and of course about 15 surfboards stored here which Mike moved upstairs before he evacuated. Not so sure how all of his tools did though...

U-Turn

2008-09-16T14:32:00.002-05:00

I got a text from Julie about 3am this morning letting me know that they were sending Johnny back down to ICU. Johnny's liver seems to be the main problem now. All of the medications Johnny has been receiving for the last four months have to be metabolized by the liver. The TPN is also a burden on the liver. You are supposed to eat your food and have it processed by your gut, not shot directly into your veins and have it processed by your liver. Because of all this abuse he is experiencing "mild" liver failure. Your liver does a lot of things you don't think about, like making the clotting factors the platelets need to stop bleeding. When the liver is not working well you are going to bleed. Because of this, and because his platelets got so low, Johnny has been having bloody gums and bloody noses for the last couple of days. Julie and Johnny got up to 910 last night about 10p, got the room organized, and went to bed. About 3am Johnny got nauseous and started thowing up a lot of blood. Most of this was probably due to the nosebleeds, but there was so much the doctor was concerned he might also have some internal bleeding. So they loaded him up and moved him back down to ICU. Julie said it was pretty scary.

I immediately headed back down to the hospital from Dallas. Kathleen is going to take a few vacation days and keep the kids and dogs until either Julie or I can get back up there to pick them up. If needed she will put them on a flight home, and we will get the dogs a little later. The kids have known Kathleen their whole lives, and she is pretty much family, so the kids are very comfortable with her. I could tell yesterday that Sophie feels a lot safer in Dallas than Houston, and both the kids really appreciate air conditioning and open restaurants.

At this time Johnny seems pretty stable right now. He has lost a lot of blood, but they are trying to keep up by giving him transfusions. About an hour ago I got a repeat of what Julie experienced last night, and it really is scary to see someone throw up that much blood. It all looks clotted so it's probably blood that has drained down the back of his throat when his nose bleeds, and not bleeding from his stomach, but it is a lot more than what I have seen before.

Julie and I will both stay here with Johnny tonight, and I think Julie put our name on the list for the Ronald McDonald house here so she can get some sleep.

Today Galveston started letting residents back on the island to check for damage, and secure any remaining property. You can't stay, but you can go down for a few hours during the day. I have some friends that went down today to check on their homes, and all said they would try to get down to check on ours. There are multiple checkpoints where you have to show ID that proves you live in the area you are trying to enter so it's possible that none will be able to get to my house, but if I do get any information I will post up here. There is a lot of distruction on the island, but there are also many, many homes that are fine. My house is in the middle of our neighborhood so I am hopeful that we will have no, or minimal damage.

Livin' Like a Refugee

2008-09-15T20:53:00.002-05:00

I'm sorry for not posting for a while, but the last few days have been pretty crazy. I'm going to apologize again, and in advance, for the length of this post.

First let me start with Johnny. Dr. Dryer decided, smartly, not to start round two of the Clofarabine on Friday. When it became obvious that Houston was going to take a direct hit she thought it would be too risky, and decided the delay might even be good in that it would give Johnny a few extra days to recover before starting. When Ike hit on Friday night all of the patients were moved to the hallway. Because of Johnny's condition he and Julie were moved to a procedure room in the center of the floor. There was just room for Johnny's bed, and a chair for Julie, but they were safe. Julie said that even there she could feel the building shaking, and hear the walls creaking. There is a lot of building construction going on in the Med Center, and so there are a lot of those super tall building cranes. Johnny is on the 9th floor, and the cranes are several hundred feet taller than that. Julie said the nurses would come in the room and tell her they could see the cranes spinning like tops in the wind. That's pretty freaky because it seems like you always hear about those things falling over in the news. It was a pretty long night for Julie, but Johnny slept through the whole thing.

Johnny was safe from the hurricane, but it still impacted his health. Johnny has been getting two transfusions of platelets every day. On Friday night Dr. Dryer informed Julie that Johnny was getting his last bag of direct donation platelets, and after that there were only four more units of platelets available in the hospital. That meant that very likely there would be none available in the morning, and his platelet count would drop very low. Dr. Dryer halved his infusion and substituted IVIG for the rest. This enabled her to stretch the one bag of platelets to cover Friday night, and Saturday morning with the hope that the blood bank would be able to deliver more platelets sometime on Saturday. Even with these measures Johnny's platelets fell to about 17 for a whole day. Dr. Dryer has been trying to keep them above 50 because of bleeding. And Johnny did bleed. Both from the gums and the nose. Luckily on Saturday St. Lukes hospital was able to deliver more platelets and he was able to get a whole transfusion on Saturday evening.

Johnny's stomach has been distended for several days, and different specialists have been taking a look at him, and trying to figure out why his liver and other organs are swelling. He has been in a lot of pain because of the swollen organs also, so they bumped up all of his pain meds. On Saturday Johnny wasn't looking very good. He was swollen, very groggy from all the meds, bleeding from his gums and nose, and in a lot of pain. He was also very nauseous from swallowing so much blood. Dr. Dryer was looking at him, and thinking that he wasn't looking all that great when he decided to thow up a large bloody clot. The next thing you know I'm getting a text from Julie letting me know they are moving him back to ICU. She was not stoked. She has seen him throw up blood after a bloody nose, and didn't think it was a big deal. Dr. Dryer had not, and it worried her enough that she felt he needed closer observation. Julie would be sleeping in a chair for a few more nights. We had been in room 931 for almost two weeks and had been on the waiting list for room 911 (the largest room on the floor) since getting back on the 9th floor three weeks ago. They had moved us back to 911 on Thursday, so we only had the room for one day before being moved to ICU. The last time we were in 911 we also ended up in ICU after two days. We have now requested not to get 911 again. All the nurses strongly agreed with that request. Johnny is moving back to room 910 as I write this.

Johnny is doing a little better today. His liver has just been really beat up from all of the antibiotics and anti fungal drugs he's been taking for the last several months. The liver specialist said Johnny is having mild liver failure, and that he needs some rest from the drugs to give the organ a chance to recover and repair itself. This is pretty tricky since his immune system is gone, and the drugs are helping him fight off infections. They are pulling back on a few things, and stopping his TPN for a few days. So far it seems to be helping and his liver is a little smaller today. That's why they are moving him back up to 9 tonight. I'm sure Julie is looking forward to sleeping lying down for the first time since last Thursday.

Now to the rest of the family: They called for a mandatory evacuation of the West end of Galveston on Thursday morning. I was anticipating this so I packed a bag of clothes for the kids and got a few things for Julie and myself. As I was packing the car I took a last look at the house and decided a pull all of the family portraits, and pictures of Johnny that I didn't have saved on the computer. I also got the computer, and all of the insurance papers for the cars and house. That may turn out to be a smart move. I took Joey and Sophie to my mom's house in Houston, and spent the afternoon cleaning up her yard of anything that didn't look like it could stand up to the 96 mph winds that were predicted in her part of town. After visiting Johnny on Friday morning we just settled in and waited for the storm. It was pretty wild watching the news and seeing how badly Galveston was getting hammered all day on the news and not even having any wind in Houston. The storm was still 150 miles out in the Gulf and the surge was already 5 or 6 feet so I knew then it was going to be pretty bad for the island.

I waited all evening for the wind in Houston, but it was really calm at my mom's untill about 9pm. Even then it was just a strong gust every few minutes and then calm. When we lost cable at about 10p everyone got bored and fell asleep. At about 2am the wind was strong enough to wake me up, I noticed that all the power was off by then. The kids were still asleep and I dropped off again pretty quickly. Then at about 4am things really got crazy. I woke up to a loud howling. It sounded like a deeper version of jet engine noise. You couldn't hear anything over that sound except for the snapping tree limbs hitting the roof. This kept going on for hours without letting up at all. My mom has a battery powered tv (everyone should, just in case) so I was able to check the local news. When they showed the radar picture I could tell it was going to be a long ride. The eye of the hurricane had missed my mom's neighborhood to the east by about a mile. We were right inside the western eye wall of the storm as it very slowely moved north through the city. It sucked. I don't know how, but both Joey and Sophie slept through the whole thing. Neither of them seems very scared about the prospect of going through the storm, and they obviously weren't too nervous about going to sleep. At least they won't have memories that would freak them out if we ever are faced with another storm.

The next morning there was a lot of debris in the yards, but my mom's house was still in one piece. Most of her neighbors were not so lucky. I couldn't count the number of downed trees as we tried to drive around to assess the damage. Lots of houses had trees on the roof, or in the living room. There were a lot of pine trees that were broken in half with the tops still dangling over houses and streets. It was pretty increadible. We spent most of Saturday cleaning up the yard, and grilling any meat that hadn't been frozen. It got dark about 7:30p, and with no TV or lights everyone one called it a night early.

Sunday morning I woke to more rain. Lots more rain. When I looked out the window it was a lake. The steet hadn't flooded during Ike, but it and the yards were completely under water. My theory is that all the debris that littered the streets had been sucked into, and plugged up, the storm drains. If the water had gotten an inch higher it would have been inside my mom's house. It was bad enough to be without airconditioning, and running water, but the idea of adding wet carpet to the mix seemed pretty unbearable. Luckily it didn't quite get that far. Sunday also maked the second day without electricity. Just so everyone knows; that's about the limit of how long meat will stay frozen in a closed freezer without power. My mom has a large freezer, and two refridgerators completely packed with meat. She could have hunkered down for months - if the power hadn't gone out. So the rest of the morning on Sunday was spent cleaning out the freezers. Yuck.

Sunday was also the day it became apparent that I couldn't keep the kids in Houston much longer. Most of the city is without electricity and gas, and things are pretty miserable. The mayor is saying it could be weeks before everyone has power. I wanted a hamburger and a coke with ice. I called a close friend in Dallas and took her up on an offer to bring the kids up there and stay a few days. I actually had several family members offer their homes, but they are all in Houston, and in the same situation. I really wanted to get the kids someplace that felt normal. So Sunday afternoon I loaded up the kids and the dogs and headed up here. It's nice to have AC and a Starbucks, but it is hard to be this far away from Julie and Johnny. The hospital is still only allowing one parent per patient, but as soon as that is lifted I will head back down.

At this time not much is known about the condition of most of the homes on the island. I have heard that my house is still standing, but is damaged. How badly I don't know. The city is not letting anyone on the island until all the search and rescue has been completed, and no one can stay until utilities are back up. It may be weeks before I have a chance to see my house to assess the damage and secure what is left of my property. It may be months before we are able to move back home. Until then I'm not sure where we will end up. I need to get Joey and Sophie into a school somewhere in Houston sooner rather than later, so I will need to determine where I will live. Between offers from my mom and my uncle I'm confident I will be able to nail down a temporary residence.

I'm fairly certain that this will not go down as one of my favorite summers.

Onward,

Mike

HOLY CRAP

2008-09-12T12:43:00.002-05:00

Hurricane season is from May 31 through November 1, and September is historically the busiest month for activity in the upper Gulf Coast. It's also the only time Mike is nervous and I am calm, I try not to get caught up in the media frenzy, even if Jim Cantore is in our front yard.

The last real hurricane we've been through was Alicia in 1983 -- Mike and I were kids at the time and didn't know each other. I'm pretty sure Mike's grandparents took him to the beach house (our house now) to ride out the storm (they always loved a good storm), as my family was huddled in my parents closet. My mom's closet was fairly large and with no power, very dark. With all of the pillows and blankets piled up it was just too difficult for me not to sleep through the entire event -- only coming out when the eye passed over the house and we went outside for about 10 minutes before it all started up again. Something my family still gives me shit about to this day.

Besides, after living in SoCal for a number of years we've experienced huge fires, flooding of massive proportions and plenty of earthquakes (oh, and civil unrest -- Rodney King riots and the OJ trial). Earthquakes freak me out. Every summer we visit PoPo in the O.C. I always give everyone the evacuation plan and meeting place if an earthquake happens -- Mike is cool as a cucumber.

Galveston is a small Island with a very small town feel. That's why we live there. No matter where you live there will always be some sort of natural disaster, you can't escape Mother Nature, but I really didn't expect a direct hit from Ike. Before I went to bed last night the news said Ike was probably going to pass Galveston and make landfall as a KAT 1. I wake up today and find out we might not have a house tomorrow. Crazy shit man.

If you are watching national news, we live on the west end of the Island in Jamaica Beach -- right between Freeport/Surf Side and Galveston. As I watch the news I CANNOT fathom the waves and flooding already happening -- watching the fishing piers disappear and landmarks we pass everyday drown in the storm surge. All I can say is, 'it's crazy shit'.

Mike's grandfather built the beach house in the late 40's to early 50's -- I'm told it was the 4th house in Jamaica Beach. It's been through plenty of strong storms and Alicia was the only one that caused any significant damage, so who knows what will happen this time.

We are all safe -- I'm at TCH with Johnny and Mike has the kids and dogs at his moms house, just north of downtown Houston. I will try and update later tonight but at a TCH/parent meeting earlier today, found out we might be moved to the hallways as the storm approaches for precautionary measures and by that time Im not sure what sort of internet connection will be available, let alone power...

Johnny's is stable, still spiking fevers possibly due to his mucusitis or just all the stuff his body is going through right now. I think postponing chemo until Monday was a good thing! Please hold our Coast Guard friends close to your heart the next few days -- they are incredibly brave men and women and have become such good friends of ours!

IKE

2008-09-11T22:47:00.002-05:00

Due to the impending hurricane Ike, we decided to wait to start chemo until Sunday or Monday. TCH is well prepared for what ever Ike has to offer, but just in case it's really bad for an extended period of time (as in, days) with the possibility of losing power, water and other utilities, Dr. Dreyer wants to ensure that we have everything at our disposal for Johnny's five days of chemo.

Now it looks like Ike is moving more towards the east and might not be as strong as predicted when it makes landfall. All good news. Otherwise not much change on our end. I took Johnny for a ride in a wheel chair yesterday -- just made a loop on the floor, but got him out of bed! He wasn't too happy about the whole thing, I noticed as I pushed him down the hall he was checking out everything, so I think it may have been a good thing for him. He also started PT -- very, very light PT -- it reminds me of the exercise show on PBS for old people where they do aerobics in their recliners. And actually Johnny has to work up to that level -- I know it was hard for him but I could also tell he was giving it his all and impressed everyone with his perseverance. Of course he will probably sleep until tomorrow night, but that's okay, he deserves it after two days of 'action'.

With tonight's new forecast, it looks like Galveston might be in the clear as the storm moves east. I'll update more later!

T MINUS 3 DAYS...

2008-09-09T19:05:00.007-05:00

Dr. Dreyer confirmed that Friday will be the start of Johnny's second round of clofarabine. I'm afraid the more I say this the less meaningful it becomes, but Dr. Dreyer rocks and everyone loves her -- especially us. I mean, we love all of the docs and they all know their stuff, but there is a huge level of comfort for us with Dr. Dreyer. Every time Johnny hit a 'bump in the road' no matter what doctor we had at the time, they always asked Dr. Dreyer for advice.

Dr. D is very hopeful about Johnny's current health status -- the way she sees it is, this is the first drug that has actually worked on his leukemia. Yes, there is still about 40-50% viable cancer, but the clofarabine works --and most people need two rounds anyway. I don't think anyone expected Johnny to tolerate the first round let alone make it to a second.

Although Johnny feels like dog doo-doo, he's much healthier now than the first time he had CLO -- he has no WBC so there is no worry about tumor lysis and all of his chemistry's have come back nearly perfect. We also know what/how/when to pre-treat for his nausea, hand, foot and mouth pain/reactions. Plus the spinal fluid came back clear of any WBC or blasts -- Monday was probably Johnny's last LP -- so that treatment worked.

When Mike told me the biopsy news on Saturday I was devastated and my heart broke. I cried all weekend, then it hit me that although this is not what we were hoping for, it is working and he is fighting and as long as he fights there is always HOPE. Johnny is in a dark place right now and we are obviously in a very serious situation, yet somehow I feel Johnny will make it through this. To make it this far, someone definitely has big plans for Johnny.

I talked to our transplant doctor last week and transplant is extremely risky too -- with a mortality rate of about 20%, if I remember correctly -- usually caused by viruses. 20%? Shoot -- each time Johnny had a serious bacterial infection, septic shock, fungal infections and/or diagnosed with a completely different cancer, he only had a 20% chance of making it then. The future is unknown, anything can happen and we still have a L O N G way to go, but he's doing it and I am blessed to be his mother.

Aunt Jennie and Crew showing the LOVE!

Round Two

2008-09-08T21:03:00.002-05:00

Today Johnny's primary leukemia doctor, Dr Dryer, confirmed what we found out on Saturday; that the Clofarabine only killed about 50% of the AML, and that Johnny is not in remission. She also confirmed that there really isn't another drug, or course of treatment, to try at this point. As she delivered this news she also made sure to point out that although Johnny still has some viable leukemia the Clofarabine was effective against Johnny's AML. She believes there is hope that another round of the drug may be able to kill more (maybe all) of the remaining cancer.

Although Julie and I were quick to agree to giving Johnny another round of Clofarabine, this was not an easy decision. The toll the first round took on Johnny was heavy, and he has not really made much progress towards recovery yet now we are going to be putting him through this all over again. Not many kids even get this drug, so the doctors don't have a ton of experience with prevention of the types of side effects that Johnny had. As a matter of fact none of the doctors had seen these types of side effects from this drug before they happened to Johnny. Dr Dryer has seen similar effects from other types of chemo, so she will try some techniques that have worked with those drugs to help lessen the pain, but she doesn't know if they will work with Clofarabine. We'll find out shortly because she wants to get started on round two as early as this Friday. With Johnny's cancer she thinks its best to try to kick it when its down. I wish Johnny was stronger, but I have faith that he will continue to be strong enough.

Onward,

Breaking The Rules

2008-09-07T16:56:00.002-05:00

Well, our rules anyway. Even though we said "no kids allowed" we let Joey spend the weekend up here at the hospital. After I called Julie yesterday to tell her about the biopsy results she and Joey had a talk about Johnny. He immediately told her he wanted to see him, and when I asked Johnny he said he would like Joey to come to the hospital. It was really nice to have them together for a couple of days. Joey is pretty much never board, so he was fine just sitting around with Johnny. Although Johnny can't really talk much because of the mucucitis I think he really enjoyed having Joey here. Johnny usually falls asleep off and on throughout the day, but while Joey was here he didn't nap once. He stayed awake all day Saturday, and they watched a couple of movies, and Joey read to him for a while. The same thing on Sunday, but he finally passed out about 3p, but Julie showed up to get Joey shortly after that, so they had a pretty full couple of days together. I think at this point it was worth the risk.

No new news from the doctors today. Before we started the Clofarabine they were pretty clear with us that this was really the last chance, and that if it didn't work there really isn't another option waiting in the wings, so I'm not sure I'm looking forward to the next conversation about how his treatment plan will change moving forward. Regardless, we'll probably know more in the next couple of days.

Biopsy Results

2008-09-06T12:59:00.002-05:00

The bone marrow biopsy results finally came back this morning. About 50% of the leukemia in Johnny's bone marrow is dead. Unfortunately it looks like some of the leukemia has survived the Clofarabine and is still viable. Dr. Shaw has already reported the results to the rest of Johnny's doctors, and we should have a good idea of our options moving forward by early next week.

At this time I really don't know what will happen next. There really isn't another drug to try, but they may decide to do another round of Clofarabine to see if it can reach the rest of the leukemia, or they may feel that this drug has done all it can do for Johnny. I know all of Johnny's doctors are working very hard to come up with something that will give him a chance to get through this.

NOT MUCH CHANGE

2008-09-04T23:31:00.002-05:00

Johnny's mucusitis seems like it's in full swing now -- it might even be working it's way down his throat, because there is a lot of stuff coming out but nothing really in there -- if that makes any sense. I'm guessing that he has the mucusitis in the back of his throat which makes it hard to swallow and forces all of the goo out. Anyway -- that was WAY too much detail for most of you, I'm sure.

When Dr. Shaw came to visit, one of the first things she did was reassure me that this is not a step backwards, it's more of a continuation/progression of the mucusitis. She wanted me to understand things are still okay -- his numbers look great, nothing has grown from the cultures and still no fever. Of course -- as always -- they are keeping an eye on every detail or change. We also found out that Dr. Dryer (his actual oncologist) will be his doctor for the next two weeks starting Monday.

On top of everything else Johnny's going through, I thought I'd amp up the pain factor a bit. I was certain a bath would make him feel better (first bad idea), and once he was ready I had him walk to the tub (about 10 feet) -- second BAD IDEA. His feet hurt so much he was in tears. But I was still positive a good soak would do him good and carried him to the tub and had him test the water -- which was WAY too hot for him. For some odd reason our bath doesn't have cold water, it feels like a 'lighter' version of hot or something, so I ran to the ice machine with two carafes (which are about the size of a 7-11 BigGulp) three times and one time I even ran barefoot, you know, because running is much more sanitary...

Johnny checked the water and gave me the signal it was okay, so I picked him up and sat him in the tub, at which point he immediately started crying that it was too hot for his feet. I quickly pulled him out and had him rest before I carried him back to bed. Luckily, Dr. Shaw increased his morphine dose well before the tub incident -- so I pretty much just sat on the button for about an hour after his bath. I should have known he would be sensitive to the water. During his last (and only bath so far) he ripped off a ginormous layer of skin and I soon found out what Mike meant when he said it was 'coming off in sheets'. I actually thought Johnny had a piece of paper towel on the side of the tub (you know the brown tri fold stuff in public restrooms) and when I reached for it I nearly tossed my cookies. Probably like you guys right about now... sorry too much info I know. That should have tipped me off that baths are pretty much out of the question for now.

Tomorrow, I will try not to inflict too much pain on the poor kid I promise. We should also hear the final results from the biopsy and spinal fluid -- pray everything is GONE!

COMMENTS

2008-09-04T13:21:00.002-05:00

Over the past few years we've haven't let Johnny's illness restrict our daily life, vacations or whatever we like/want to do, in fact it may have inspired us to push the limits a few times -- which is good. Regardless of how dark times have gotten, I think the good experiences out-weigh the bad ones for sure. We've had quite a few people say that our life would make a great movie one day (sometimes I think more 'horror' than 'feel good/chick flick', but that's just me...). Mike and I always laugh at the idea when I tell him it would probably be some cheesy over dramatic Lifetime movie starring Meredeth Baxter-Briney or Leah Thompson or something.

Enter a new character: Kenny the young uber-cool Jamaican cleaning guy -- I kid you not. Mike and Johnny met him last week as Kenny took care of their room. I just met him this week -- and to me, he would be the important tertiary role (played by Don Chedele) who walks in towards the end of the film to give the parents hope and esoteric advice. Okay, I'm obsessed with pop culture, okay?

The other day before Johnny had his procedures I was definitely nervous, borderline tense. In walks Kenny with his dreds pulled back in a thick ponytail wielding a broom and cleaning products. He only nods to say "hello" and gets to work, then slowly starts to start a conversation by asking where dad was and letting me know he took care of them last week. I'm positive he sees a lot of nervous, tense parents and probably picked up on my vibe pretty quick.

He starts to tell me about how to heal Johnny and how he prays for him to get back on his skateboard to be the Johnny we all know and love. Then he starts to tell me that the only person between God and Johnny (or any child) is me (a mother) because God brought him to the world through me. And that nothing can heal a child like a mothers love and strength, but I have to channel God to help with the process because He calls all the shots. I know it sounds cheesy coming from me -- Kenny did a much better job of it with his Jamaican accent and earthy, esoteric philosophy. As he finishes cleaning the room he starts to hum a Peter Tosh song Johnny Be Good Tonight (reggae of course) to Johnny and leaves the room. Each day Kenny comes in to do his job, he adds to yesterday's lesson and sings Peter Tosh to Johnny.

I think Kenny genuinely wants Johnny well, is sincere about his philosophy and not feeding me a bunch of crap. Mike and I both talked about how interesting he is and what a great character he would be in our movie. But if Don Chedele plays Kenny I'm sure it will make it off cable and into the theaters. Anyway, all that to say I never really considered our life a movie until Kenny entered the picture --

SMALL VICTORIES

2008-09-03T21:27:00.002-05:00

Yesterday's news is definitely a small victory but regardless of how fantastic the news, we still have a long way to go before transplant.

Today was not quite as good as yesterday, although we had a pretty uneventful night which is awesome. His pulse/oxygen monitor only went off when his heart rate was to low -- it dropped as low as 66, which is totally normal for kids Johnny's age!

But this morning Johnny awoke with severe mouth pain due to the mucusitis. I pressed his morphine button quite a bit today because I don't like hearing him moan in his sleep. This stuff is crazy and hard to understand, yesterday it looked great -- even awesome -- like it would only be a few more days before it was gone. It's nothing really tragic, but after yesterday I hoped it might be smooth sailing until transplant. His hands and feet really look great though!

This afternoon the doctor's seemed more worried about Johnny's comfort level than anything else -- the mucusitis isn't an issue right now -- it's just part of the process yet extremely painful. I then asked if yesterday's results meant 'remission' (what she said yesterday was 'his marrow is wiped out and there were no cells to even look at' yet avoided the word remission). Dr. Shaw hesitated to say 'yes' because we are waiting for the biopsy results, not just the aspiration. Although his LP fluid showed no white cells or blasts, there were a few red cells -- the results should be here by Friday -- although everyone is pretty confident it's contamination. She was very positive about everything -- even today and doesn't expect anything else to show up.

Tonight he spiked a 102 fever, which stinks because it's been nearly a week since his last one. I am praying it's due to mucusitis and the pain associated with it and not an infection in his line or something. It feels like we are so c l o s e.... and trading every victory for a setback. UGH! All I pray for is Johnny to be infection free and able to regain his strength for transplant -- that's it. That's all I want... come on, how hard can it be, right?

PROCEDURE DAY

2008-09-02T20:22:00.002-05:00

Wow. I don't even know how to being this one -except that I finally have good news to report!!! Not just good news, or even great news -- beyond words that's all I can say. Our doctor's came in this evening to report that the clofaribine did what it was supposed to do; completely wipe out Johnny's marrow -- as in there were no cells to even look at.

His heart rate is back to real Johnny numbers -- somewhere in the 60's, his liver, skin and mouth are recovering -- all good signs of course. The doctors, nurses and even the cleaning people are ecstatic to say the least. Mike and I are beyond words, finally tears of JOY!

The other side of not having any marrow is Johnny cannot make blood products -- namely PLATELETS -- so please still donate A+ or O+ for our little HERO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

BIG HUGS TO ALL Jules

ps: keep praying for no infections until transplant!

SWITCH-A-ROO

2008-09-01T22:16:00.002-05:00

Mike and I switched places for the week -- I have to say being home for a full week felt good, I was able to start and finish projects and even had a little quiet time. Hopefully Mike will too.

When I arrived at the hospital, Mike gave me the run down of any changes in meds and generally how to take care of Johnny. When I left 7 days ago, his hands were just starting to turn red and he could stand with assistance. The past week was a different story -- Mike had to lift Johnny to use the restroom and bathing was a thing of the past. I cannot describe how bad Johnny's hands looked -- the only thing I can compare them to is a burn victim. Since this is at least the third time Johnny has been extremely sick over the past 90 or so days, his strength and immune system ain't what it used to be and now we are battling bed sores. oh goody.

None of this has anything to do with Mike's care taking abilities -- he just happened to chose a bad week to be here. As Mike was giving me the down-low on Johnny's mouth care, he was also showing me. I can't begin to describe how gnarly this stuff is and won't go into any sort of detail except that when Mike was showing me how to clean Johnny's mouth, I thought to myself , "Well. I won't be eating this week..." that's how gnarly it is.

There was a moment when I thought I couldn't make it the whole week. Yesterday I hit a few rough patches but luckily Johnny seemed to be somewhat understanding. The planets must be in perfect alignment or something because today was a great day. My goal for the day was to clip Johnny's nails -- gross, I know, but for the past week and a half we were terrified to touch them and cause any unnecessary pain. So I recruited our nurse to help me with a quick manicure -- Johnny was less then stoked about the idea but it went very well -- so well that I thought even bigger than just manicures -- I was thinking bath time!

Over the past few months Johnny's muscles have atrophied -- and so have mine. That said, the first time I tried to pick Johnny up I thought "oh shit this kids heavy...", followed by, "oh shit, I'm outta shape...". I had to have a heart to heart with Johnny and we agreed I would help him as much as I possibly could, but I would need his help as well. I could tell he was very nervous about the possibility of walking, let alone getting in the tub -- but he did it. We did it. He enjoyed his tubby and soaked for about 30 minutes -- wire/tube free.

As Johnny was soaking, I was trying to get a feel of what was going through his mind and maybe have a small conversation about anything. There was a slight pause and out of the blue he said, "I want the Hi-C orange juice boxes... and some of that Hawaiian punch stuff. Oh and some green Gatorade." So that was what was on the kids mind -- what to drink when he's out of the tub. I placed the order with Mike's mom and in no time, his drinks were here and Johnny was having his own 'taste test'. I'm not kidding -- I can't keep the cups full enough or cold enough and he just goes from one cup to the next. They are lined up according to preference, but most of the time he tastes everything just to see what he likes. So far it's everything. Later, he said, "I guess Grandmommy forgot the Sunny D" -- and I told him it wasn't on his list (I wrote it down to make sure I got his order perfect) and showed him. He shrugged in a way that let me know he told me, but I didn't write it down -- (basically, I was full of crap). He also had TWO Popsicles -- not the whole thing, but two flavors none the less.

All in all I think the day was a huge success even with the few minor bumps in the road -- and pray tomorrow is just the same if not better.

Another Platelet Run

2008-08-31T10:29:00.002-05:00

Johnny's doctors just stopped by to give Johnny the daily once over. They really seemed pleased with his progress, and will start backing off on some of his pain and anti-nausea meds. His IV pole currently has six pumps going. It looks like a Christmas tree.

While they were here Johnny's doctors mentioned that there is a real possibility that he will have to get multi-donor platelets over the weekend because his store of single donor units is running low. Johnny is burning through platelets as fast, or faster, than ever and is getting at least two transfusions every day. I know everyone is very busy preparing for the possibility of a hurricane in the next few days, but if anyone has time to donate platelets for Johnny it would be very much appreciated. Johnny is type A+, and now the CMV doesn't matter. His last test showed he is positive for the virus, so he can now get platelets from any A+ donor. Platelets are less dependent on type than whole blood, so in a pinch he can get platelets from O- or even other from other blood types, but that would not be preferred. If the blood bank is running short of platelets for Johnny they are probably running short for everyone, so if you have time please donate regardless of blood type.

Thank you.

A Little More Comfortable

2008-08-31T01:53:00.002-05:00

Johnny finally seemed to be a little more comfortable today. He still can't stand, but he is able to put a little more pressure on his feet. His hands didn't seem to bother him as much today either. His hands did start to peel though. Not like after a sunburn, but big, thick sheets of skin came off his palms. It looked gnarly, but he said it actually felt better to get the dead skin off. Unfortunately the skin underneath looks just as red. Johnny was also awake a lot more today than the last few days. He's not talking much, but he is starting to watch TV a little more. We watched a really cool program on Discovery about life in the ocean. It was nice seeing him interested in something.

Although we have been very careful with Johnny's mouth care it looks like he is developing mucusitis. This is a painful condition where the inside of his cheeks develop sores, and the skin slofts. It also causes him to have a lot of bloody saliva. He is really trying not to swallow too much, but he can't help but get some in his stomach which causes nausea.

Johnny's counts remain looking good. His WBC was as low as .01 this morning! He didn't spike a fever today, and his heart rate was in the 130s most of the day. All improvements from Friday.

Onward,

Waiting

2008-08-29T22:10:00.004-05:00

It hit me today that the next few weeks of recovery for Johnny may well be the most difficult for Julie and me. Until he is ready to go to transplant Johnny will not be getting any additional chemotherapy other than the spinal taps scheduled for the next two Mondays. This will allow him to regain some strength, and hopefully start feeling a little better. For Julie and me though, it will be weeks of waiting for twice daily lab results to see if his WBC stays down, and worrying that every fever spike is the start of another infection. Johnny has crossed so many obstacles to get to this point, and its hard to finally see the goal and not quite be able to reach it.

I confirmed today that Johnny does have a donor ready for transplant, and that the only real holdup at this point is Johnny. He is currently too weak to go to transplant. Preparation for transplant involves more very intense chemotherapy with drugs that Johnny has not yet had exposure to. He will also go through extensive radiation therapy to make sure to the greatest extent possible that none of the cancer has survived. Both Dr Shaw and the doctors on the transplant floor are worried that in his current condition Johnny would not survive the procedure. The normal recupreation time before begining transplant preparation is eight weeks. Johnny will not have the luxury of that much time to regain his strength. All of Johnny's doctors feel that it is important to get Johnny to transplant as soon as possible to avoid the possibility of another relapse. None of them want to put Johnny through another round of Clofarabine, and doing so may be pointless if he can't get enough recovery time to get to transplant. At this time everyone has agreed that Johnny will move to the 8th floor (transplant) on October 1st, but with the understanding that the date could be moved up or back depending on his condition. I'm sure Johnny would probably like to put off the chemo and radiation as long as possible, but for Julie and me it can't come soon enough.

Onward,

Tachycardia

2008-08-28T20:21:00.003-05:00

A case for working out: When Johnny relapsed he was in pretty good shape. He got some form of exercise almost every day, and when we first settled in to this hospital stay many of his doctors and nurses commented on how low his resting heart rate was. While sleeping his heart rate regularly fell into the mid 30 beat/minute range, and while awake he would be in the 60s. I guess for a kid his age this is really low. All that conditioning has really paid off. When Johnny had his first bacterial infection I remember how frightening it was to see his heart rate in the 160s. When he got his second bacterial infection it went to 200 when his fever hit 106. Both of those episodes were short lived, and as soon as the infections and fever were under control his heart rate dropped. It never got back to normal for him, but it dropped into the 70s/80s. Then he got AML. When his WBC first spiked several weeks ago his heart rate jumped up into the 180s/190s and stayed there. For days on end. Even now that his white cell count has dropped to less than 1 his sleeping heart rate is in the 150s. For weeks now his heart has not beat slower than 120 beats per minute regardless of fever or white count. This is probably another side effect of the chemo used to fight the AML since many of these drugs can have a negative effect on the heart. The cardio team just completed a 24 monitor of his heart functions and we should have the results in a few days. Their immediate impression is that his heart is still functioning properly, and does not appear to be damaged. It's just going really, really fast. I'm just glad its beating, but I do hope it slows down a little.

Today was relatively uneventful. Johnny is on morphine for the pain in his hands and feet, so he slept most of the day. It does look like all of the drugs are starting to cause some liver problems, so the doctors and pharmacists are trying to work out a program that might be a little easier for him to handle. He also spiked a fever this evening. Nothing has grown in any of the cultures, so he may have a virus, or it may just be because of the pain. All of his labs were good, and his WBC was down to .03!

Onward,

No Kids Allowed

2008-08-27T19:52:00.002-05:00

We have a new Attending starting this week, Dr Shaw. This is Dr Shaw's second rotation with Johnny, so it was nice that she was familiar with him from day one. All of the doctors do a great job of updating each other, so they all know about Johnny's medical condition, but Dr Shaw already knows about how to read Johnny to tell if he's hurting or mad or whatever.

Today Dr Shaw came with some good news. The spinal tap that Johnny had on Monday came back clear! No blasts, which means that more than likely the cells found in the earlier LPs were contamination with blood from outside his spinal cord. Johnny will still need two more LPs, but at least we know we aren't fighting cancer in his spinal fluid. Johnny's WBC is down to .05, so if things continue on this track Johnny should be headed to a bone marrow transplant sometime late September or early October.

There are still a couple of things that could delay, or even prevent, getting to transplant. The first of course would be the AML flaring again. This would put us back at square one, and at this time I'm not sure what our options would be. The second, and much more likely, would be Johnny getting a secondary infection that would need to be fought prior to going to transplant. An infection could kill Johnny, or delay treatment long enough for the cancer to come back. We can't do much about the possibility of the AML returning, but we do need to take every precaution against the possibility of secondary infection. Now that Johnny's immune system has been completely compromised, and school has started back up, Julie and I would like to ask that Johnny is only visited by adults who are pretty sure they're not sick. I hope this doesn't come across as rude. We just want to make sure that we take every precaution possible to ensure that Johnny has the best chance we can give him to get through this.

Johnny's hands and feet actually look worse today, and seem to be super tender. Because Johnny won't push the button on his morphine drip Dr Shaw decided he needed to be on a continuous drip. Today she increased the amount he is getting because even though he won't say anything he is obviously in a lot of pain. The nurses and I are keeping the palms of his hands and soles of his feet moisturized with lotion, but we have to push his button several times, and give him a dose of Adavan just to be able to touch him. Not because he will complain, but because it hurts us to think that we are causing him any pain. It's just nuts to think how toxic the Clofarabine must be to do this to him. Now I understand why the nurses who gave it to him were wearing haz-mat suits.

Hopefully tomorrow will bring him a little more relief.

OVERWHELMING SUPPORT

2008-08-27T09:59:00.002-05:00

WOW... Thank you for the overwhelming response with donating blood in Johnny's name! Trust me, he's been burning through platelets like crazy. Unfortunately he can't use everything donated in his name because of the HUGE response from everyone -- some times he has over 50 donations waiting for him in one day -- that is AMAZING!

Blood products are HOT commodity and platelets only have about a 3 day shelf life. Of course the blood center at Texas Children's doesn't want Johnny's donations to go to waste so they need our doctor's signature to release them for other children. Which technically doesn't sound too bad to us, but it is a nightmare for the technicians and doctor's as they race against the clock trying to coordinate signatures, donations and recipients.

The blood center at Texas Children's asks everyone to still donate separate blood products (platelets OR red cells OR plasma) in Johnny's name only if you are A+ CMV negative -- usually blood type doesn't matter with platelets but because of the past reactions we have to be specific with Johnny. If you don't qualify specifically for Johnny, you can still donate and Johnny would receive 'credit' for the donation -- that way other people can use your donation, but you still help us out.

I hope I explained this correctly! If not and someone from GCRBC or TCH blood center wants to clarify things, email me at triplejms@comcast.net and I will set the blog up so you can post a clarification to my clarification:)

hugs to all Jules

LOST

2008-08-27T08:14:00.002-05:00

Mike has lost contact with all civilization -- no internet connection -- so he's asked me to do a quick update.

Yesterday Johnny's WBC count was .5 and blasts were under 10%. The scheduled LP (lumbar puncture) was done in ICU due to Johnny's nausea (he could aspirate under sedation) and all well well. The preliminary results showed no signs of blasts, but that could change as pathology takes a closer look.

Johnny is scheduled to get his hearing tested although it's not a huge priority right now. He mentioned to me last week that his hearing seemed muffled, but lately it seems to have gotten worse. Quite honestly I can't tell if it's his hearing or he's just out of it from the drugs. When his eyes are open, he seems awake and you ask him a question he usually doesn't answer you. Then you talk louder and slower (like your talking to your grandparents) and he slowly turns his head to look at you and asks "huh?", and you have to repeat the question a few more times. I hate it and it totally creeps me out, but the alternative is much worse -- nausea and extreme pain -- so if I had to choose between the two, I'd opt for a comfortable loopy Johnny verses being covered in vomit and tears of pain.

I'm not sure what the next step is for treatment and transplant, but as soon as Mike gives me an update I will let you know.

I'm at home with Sophie and Joey for the first week of school -- Sophie is in First Grade and Joey is in Seventh. I have to admit it felt strange the first day of school without Johnny yelling at everyone to hurry up or we will be late. I was very proud of Sophie marching in school all by herself -- usually she walks in with Johnny, but this year she hopped out of the car and walked right in no problems. My niece Emma had her first day of Kindergarten this week too. As they toured the school last week to get the kids acclimated and were in the cafeteria, Kristin asked Emma if she was going to buy her lunch and Emma asked, "Are their waiters?" and Kristin replied "No. No waiters at school", so Emma said if there are no waiters she will just pack her lunch. -- and I thought Johnny was high maintenance!

Both Joey and Sophie were having major mommy issues last week -- even Joey who is a TOTAL daddy's boy. They have been very clingy and needy -- kinda makes me feel good though. Since we've been together this week, everyone seems to be doing much better and very happy with our monotonous school routine.

Busy Day

2008-08-25T23:55:00.002-05:00

Johnny had both a spinal tap and ultrasound scheduled for today. The ultrasound was to check his kidney and liver, and everything seems to be ok. Johnny's liver chemistry is elevated, but it doesn't look like the chemo and meds have done any real damage. The high numbers could be a reason for all the nausea though. The spinal tap went very smoothly. Because Johnny had been sick to his stomach all morning Dr Kilbourne decided to do the procedure in the ICU in case there were any complications. Nothing happened though, and Johnny handled the sedation well. Although we won't have the results of the LP until tomorrow I do know that there was only one white cell found during the preliminary check. When they spin it down they could find more, but it looks like a lot less than last time. If none of the white cells found are blasts then the LP is deemed "clean", and Johnny will only have to have two more. Regardless he will have another LP on Thursday.

Today started at about 3am this morning with nausea, and has been going pretty much non-stop. I'm hoping Johnny will sleep through till morning. Me too.

SUPPORT

2008-08-25T14:08:00.004-05:00

Although Johnny is technically in fifth grade this year, his fourth grade teachers wanted him to know they still love him very much:

This was from Holly -- my coach from the marathon last year -- she and her son are running the SFO Nike Women's Marathon with a bunch of other folks and breaking the rules by having a 'sub group' called the Romano Running Rebels.

Holly and her son Jacob

WBC = .8/ What's Happens Now?

2008-08-24T23:12:00.003-05:00

Johnny's afternoon labs showed his WBC down to .8! His blast count is also dropping, and is down to 19%. So he doesn't have many white cells left, and of those he does have only 19% are cancer blasts. As nasty as the Clofarabine is at least it is working against Johnny's AML. I'm excited at his progress, but I hate to see what this chemotherapy is doing to him. Johnny's hands and feet are very swollen and dark red. It looks like he's been soaking them in boiling water. I wouldn't be surprised if the skin starts coming off soon. He has to be in a lot of pain, but he won't complain. I know his feet hurt because he can't stand at all, but I usually have to make him push the button on his morphine. If it was me I would hitting that thing as often as possible. I would also be crying like a baby, but I don't think Johnny has shed a tear or complained once during the whole three + months he has been in the hospital.

So what's next? Getting Johnny's WBC down was just the first step towards a bone marrow transplant. Now we will have to watch his counts closely for any indication that the AML is still active. The doctors are pretty confident that the Clofarabine has pretty much wiped out his marrow, so they doubt that will happen, but this is Johnny so nothing can be ruled out. Our next priority is to get his spinal cord clear of blasts. His next spinal tap (LP) will be sometime tomorrow, and he will get a combination of three chemotherapy drugs. They usually only use one at a time, but at this point I would be cool if they threw the kitchen sink in there also. Nothing should be held back. If tomorrow's tap is clear he will still need to get two more LPs to make sure there is nothing hiding in his spine. If he stays in remission, and we get the spine clear Johnny will be "rushed" to transplant. I say rushed because treatment for AML is typically several months, but in Johnny's case the doctors want to get him to transplant before his cancer has a chance to adapt to treatment.

Johnny's immune system is completely compromised at this point, and will stay that way until well after the bone marrow transplant. Apart from keeping his cancer in remission, keeping him from getting sick will be the major battle. If Johnny were to get another bacterial infection or a pneumonia it wold be very difficult for him to recover. He has fought these types of bugs before and beat them down, but he was much stronger then, so we want to avoid a rematch if at all possible.

Onward,

MR

930

2008-08-24T19:04:00.004-05:00

We are in! This morning the doctor's came in and looked at Johnny and thought there is nothing that ICU is doing that can't be done on the 9th floor -- so we are in room 930.

The final dose of clofarabine couldn't have come any sooner -- this stuff is hardcore and we are all glad it's over. It seems to be working -- this morning Johnny's WBC count was .80!!! Awesome. If you look at all of his labs it would seem that he's a relatively healthy kid with cancer -- a few things are off but nothing too dramatic, which is why the docs sent us up to 9.

But looking at him is a different matter. He is in incredible pain all over his body, his face, hands and feet are swollen with a burning rash that makes it painful for him to do anything. He still has bouts of vomiting, but I think pain management is key.

Yesterday Johnny stopped breathing 4 times. The first 3 times it was just Jim and I and we kind of looked at each other like "did that just happen?", all three times I woke him up but it was difficult to arouse him and he still seemed pretty out of it. We told the nurse and she said she make a note of it and a true apenic episode is when he stops breathing for 20 seconds. I wasn't about to let it escalate to that point.

The doctor's came in and we told them about what had happened, they didn't seem terribly concerned, but would make a note of it. As we all stood around Johnny's bed and gabbed about how we think this was a side effect or that was a side effect -- it happened -- and no one noticed until the alarm went off which meant it had reached the 20 second mark. We all jumped and I had to shake him quite a few times while practically yelling at him to wake up. When he finally did, he was extremely groggy and out of it not to mention mad at me for bothering him.

I guess we were lucky it happened with the standing bedside. They think it is due to all of the anti-nausea meds he's on and decided to cut the most potent one and only use it on an as needed basis. Right now he is on zofran, phenergen, and marinol (a marijuana based drug -- ROCK ON!) and this mixture seems to do the trick without making him so out of it and relaxed he stops breathing. Since the adavan was cut, he's been fine and no more incidents have occurred. WHEW!

For the past two night exactly 12 hours after chemo the side effects kick in. Fortunately, they peak between 12-2pm and start to drop off about 8am. With the clofarabine behind him hopefully things will start to get back to normal -- except he has an LP tomorrow with all three drugs and will probably make him pretty sick for a day or two.

Although Johnny seems to be responding to the treatment, Mike and I are still on pins and needles. So many things can still go wrong very quickly with his organs and infection (his heart rate has been at 130-200 for almost two weeks) and I'm not sure how much he has left in him. It seemed like before with the other illnesses as soon as he made it past a certain point things would be good but with AML the future is very uncertain.

Day Four

2008-08-23T22:50:00.002-05:00

Johnny had his fourth dose of Clofarabine last night about 10:30p. This drug has a cumulative effect, and almost as soon as they began the chemo Johnny started having stomach and joint pain which got progressively worse as the two hour infusion wore on. Once the infusion was complete the pain slowly subsided, but later in the day on Saturday Johnny's hands and feet became very red and swollen, and he said they felt like they had been burnt. Another side effect of the Clofarabine. This stuff is nasty. The good thing is that it seems to be working. Johnny's last WBC was 1.4. If it continues to fall at this rate we should be at or near zero by the end of the weekend. With no white cells there should be no blasts. The next focus will be Johnny's spinal fluid. He will get an LP on Monday, and if everything is clear he will get two more over the next couple of weeks. During the last couple of visits by the Hem/Oc doctors it sounds like there are preparations being made for transplant. At least they are entertaining the thought that we will get there.

As I write this Johnny just completed his fifth, and last dose of Clofarabine. They ran the infusion over a longer period of time (2 1/2 hours) to lessen the negative reactions. That was probably the right thing to do since his only real complaint was hip pain, but it did prolong this reaction. He was obviously uncomfortable, but the nurse tried to stay ahead of the pain with morphine which seemed to help. I'm not sure if tonight's infusion was less painful than last night, but I don't think it was worse. Since the effect of Clofarabine is cumulative the doctors said he will probably feel worse before he starts feeling better. Maybe in a couple of days, after some of the drug leaves his system, he will begin to regain some of his energy, and we can get back up to the 9th floor.

INFORMATION

2008-08-23T05:39:00.006-05:00

There have been some requests for information about the up coming benefit held for Johnny, hopefully this will help:

Johnny Kicks Cancer Benefit Saturday, September 27, 2008

2:00-6:00pm Skate Contest @ Galveston Municipal Skatepark (27th & Seawall Blvd.)

6:00-11:00pm BBQ benefit @ Float (2828 Seawall Blvd.)

Sponsorships available at:

JohnnyKicksCancer.com

via email at:

JohnnyKicksCancer@live.com

and at local surf shops...

Ohana

Surf Specialties

Underground Surf Depot

Medical trust account:

Johnny Romano Medical Fund

c/o Bank of America

6311 Central City Blvd.

Galveston, Texas 77551

Or check out the flyer.

Day Three

2008-08-22T20:19:00.002-05:00

Johnny seemed a little better today. His WBC has continued to drop, and as of his 4p labs is down to 6.5! He still has two more doses of Clofarabine, so we are looking forward to his WBC going to zero, or very close to zero, by the end of the weekend. The Hem/Oc doctors have decided to wait until Johnny is done with the Clofarbine before they start up the spinal taps again. His clotting factors are still high (which means he has a harder time clotting), and the doctors would like to see them come down a little to lessen the chance that they will get a contaminated sample of spinal fluid. There is still a chance that his spine is clear, but we won't know until they are able to get a good LP. Dr. Kilbourn would also like to get through the Clofarabine before doing the LP just because this chemo is so strong. Johnny seems to be tolerating it ok, but it's still wiping him out. I agree that it would be better not to hit him with too many things at once even though the blasts in his spinal fluid need to be addressed.

Even though it is very difficult to have visitors in ICU our friend Jim T. and Johnny's best buddy, Heath, have been up to the hospital. Johnny's been pretty out of it, but I think he has enjoyed listening to "skate" talk. When those guys are in his room he tries pretty hard to stay awake so he doesn't miss anything. Jim even showed Johnny some ideas for future products and clothing, and asked for his opinion. Jim was able to tell between a good shrug and a bad shrug pretty quickly.

Overall Johnny looked a little better than yesterday. He doesn't seem to feel much better yet, but he might not until he gets to the other side of the Clofarabine, and has a little time to rest.

Day four starts at 10:30p tonight.

Donation Clarification

2008-08-22T14:23:00.003-05:00

We understand that our call to action regarding blood donations is getting great results! Julie and I cannot thank everyone enough for how everyone has rallied around Johnny and taken the plunge to donate blood or platelets. I can promise these efforts will not go to waste. Johnny got platelets last night (single donor, yea!) and has already gotten two more bags this morning. He also got red cells this morning.

One issue has come up with the direct donations. It is important that donors provide Johnny's full name; Jonathan Michael Romano. Apparently quite a few people have tried to donate for Johnny Michael Romano. I guess the computer system doesn't recognize "Johnny."

Thanks again. Without people willing to give blood Johnny would have passed long ago. It really is the gift of life.

BTW WBC down to 11 at the 10a labs! The Clofarabine is taking a toll though.

STEADY

2008-08-22T04:13:00.003-05:00

Not much change today -- everything seems pretty stable -- which is good. Maybe slightly better than yesterday as far as the vomiting goes. The doctors put him on a rotation of 4 anti nausea drugs scheduled to overlap one another so he will always be covered -- which seems to be doing the trick.

His mouth is a mess-- swollen, bleeding gums -- but when we ask if they hurt, he says no. Which is really hard to believe from the looks of his mouth. Although with all of the nausea meds, maybe he doesn't notice the pain because he's sleeping most of the day.

The last labs showed a WBC of 15 -- almost a normal number! I know the doctor's advised me to not get too hung up on the blast count but I can't help it -- it was 86%. Johnny was due for another LP(lumbar puncture) yesterday but because of his high heart rate and breathing and the sedation used for the procedure, the doctor's decided to wait until the numbers dropped. The leukemia team also discussed the chemo options used for the LP's. Usually it is either methotrexate or ARA-C but because Johnny is Johnny they don't want to take any chances and are thinking about using both chemos plus a steroid. I'm sure we will find out more during the morning rounds.

Late this evening our friend Jim T. flew in from SFO to hand deliver some stuff he made for Johnny:

Even though Johnny was pretty much out of it for most of Jim's visit, every once in a while he would open his eyes, check out the deck then fall back to sleep.

DIRECTED DONATIONS

2008-08-21T02:07:00.003-05:00

My sister checked with the Blood Center and Johnny is already in the system -- his MRN# won't work, but if you say your donating for Jonathan Michael Romano DOB 4/23/98, it shouldn't be a problem! He just finished a bag a plasma (FFP -fresh frozen plasma) and is getting ready for what will hopefully be his last bag of random platelets for a long time! Usually if there could be a potential for reactions the doctor's will hold off on transfusing, but he is at a critical level right now (13 -- with active bleeding) so we just have to be prepared for what might happen.

THANK YOU SO MUCH FOR DONATING!

Big Drop

2008-08-20T23:45:00.003-05:00

The results of Johnny's 10p labs just came back and his WBC is down to 50! That is less than half of what it was this morning. I am both very relieved, and more than a little surprised. Johnny looks like crap. I think it's the bleeding gums that are throwing me off, but he doesn't look like a kid who is heading in the right direction. It appears that in this case looks may be deceiving. As he is loosing white cells, he is also burning up platelets. He will need another transfusion tonight since his platelet count has dropped from 57 this morning to 13 this evening. That could explain some of the leaky gums and nose bleeds. Thanks again to everyone who is donating blood and platelets for Johnny. They definitely won't go to waist.

So far Johnny seems to have done pretty well with the chemo tonight. His vital signs were stable throughout the transfusion, but he is laboring to breath. This has been going on for some time (off and on for a couple of weeks) but the

Day Two

2008-08-20T20:21:00.002-05:00

By the time I finish writing this Johnny will probably be starting his second day of Clofarabine. Hopefully the next 24 hours will go a little more smoothly than the last. Today wasn't actually that bad. The doctors are trying a rotation of different anti-nausea medications that seem to be doing a pretty good job of helping keep the dry heaves at bay. Yesterday he was vomiting all day, but today he only had a few bouts with nausea. These were mainly due to swallowing blood. He has had a nose bleed off and on today, and his gums are bleeding pretty badly also. Because a lot of the meds that help his stomach also put him to sleep he ended up swallowing enough blood to cause problems that no meds are going to handle. Like I said in an earlier post; "Stomachs do not like blood." Johnny also spiked a fever a couple of times today. Most likely due to the blood products he received, but the doctors are continuing a lot of heavy antibiotics just to make sure he isn't getting an infection. Every precaution is being taken to make sure he doesn't catch anything, since he would have almost no defense right now. When we were told that 3 of the 4 kids who got Clofarabine died during treatment it was due to secondary infections. On the plus side, the one kid who made it through treatment went on to be a long term survivor. At least that's the way I remember the story.

Johnny's WBC has been slowly going down. On the last labs from late this morning his WBC was down to 106. They aren't dropping as quickly as they went up, but at least they are going in the right direction so far. I will feel a lot better when I see them head down past 15, the lowest mark they reached on the last meds.

BTW We are officially out of room 911. Although we weren't there long, I'm gonna miss it.

DIRECTED DONATIONS

2008-08-20T12:46:00.006-05:00

I was just talking to one of Johnny's nurses about his reaction last night and she told me she will contact the Gulf Coast Regional Blood Center about making Directed Donations for Johnny. This way if you make a blood product donation -- please either platelets or red cells or plasma -- Johnny will have it waiting for him when he needs it.

For Johnny, a reaction to the blood products is usually because they are from random donors -- meaning if you donate whole blood (takes about 15 minutes) -- it's separated into 3 components: red cells, platelets and plasma. It could take many random donors to make one unit for Johnny -- and this could potentially be the root of the problem. Most people --even Johnny -- didn't have problems with random donations, it wasn't until he was diagnosed with AML that he had reactions.

So please, if you like to do whole blood -- that's cool -- but if you want Directed Donations specifically for Johnny that is even BETTER. As I was packing our room on 9, it sounded like the paper work was already being signed and faxed -- when I find out his 'specific number' I will post it as soon as possible. His MRN: 8928268 -- you might try that in the mean time.... I hope I said all of that correctly -- and our friends at the Blood Center aren't mad!

thanks Jules