Johnny’s Story

JOHNNY ROMANO – Common Does Not Equal Cured

Johnny is our middle kid, or what I like to call our cream filling. His brother Joey is two years older and younger sister Sophie is the baby of the family.

Johnny is not your typical kid. He isn’t into video games or sitting in front of the TV all afternoon – he’s always been a kid of action and loves to be outside. One afternoon as we were cleaning out the garage, he found his dad’s old skateboard and his eyes lit up. Usually, when kids find a skateboard for the first time, they either sit on it and scoot around or lie on their tummies and push with their hands. Not Johnny. He stood on the board – and didn’t fall. Pretty good for a two-year old.

You might say he became a skater at that precise moment. His dad and brother would try to get Johnny to play Tony Hawk video games but it only made him want to go outside to try the tricks from the game. He couldn’t understand why the boys would rather play video games instead of actually going outside to skate.

I would take him to skate parks and cringe as he dropped on a small bowl or try to pop an ollie over a ramp. Parents would ask how old Johnny was, and I would say, “He just turned four.” They would reply, “Wow. He’s a natural. He’s got great style.” I had no idea what that meant, all I could see was my son zipping along having fun and rarely falling. He would quietly study the older skaters and wait until we were home before practicing the tricks he saw the big kids land earlier that day. He loved skating.

The Diagnosis

Our lives changed on May 26, 2005 – Johnny’s last day of first grade – he was just seven years old. I knew something was ‘not quite right’ with Johnny for a few weeks, but couldn’t put my finger on it. No fever, rash, sore throat – nothing specific I could take him to the pediatrician’s office and say ‘this is what’s wrong with my son.’ Since Johnny wasn’t skating, not really eating, and wanted to sleep a lot I tried to ask him what was wrong. I said, “I know you don’t feel well, but you don’t know how to tell mamma, do you?” He just nodded and fell into my arms and cried. I called the doctor’s office and made an appointment for later that evening and had some time before we left , so I did what every mother does when they are worried about their child – comb the internet for answers.

I typed in the keywords “pale” and “weak”. Most of the sites were for infants with iron deficiencies or other aliments I knew weren’t affecting Johnny. I wasn’t too worried until I noticed at the bottom of every website I opened was a link to leukemia.

I finally got up enough courage to click one and read the symptoms: Pale, weak, fatigue, low appetite, low grade fever, aches, pains, — all of which Johnny had, but were also very vague as well. Then I read the last symptom – gum problems.

The entire month of May I had been taking Johnny to the dentist because his gums were inflamed and sore, but nothing the dentist did or prescribed seemed to help. At that moment, I knew Johnny had more than just the flu, I was sure he had leukemia.

Our doctor’s appointment was terrifying – they drew blood and we were able to get the lab results almost instantly. They didn’t confirm the diagnosis, but they knew Johnny had leukemia and wanted us to immediately take Johnny to the hospital. The scariest thing to hear from your child’s doctor is, “We will be praying for you.” Doctor’s don’t pray for your child, they fix them.

We were immediately sent to Texas Children’s Hospital where it was confirmed Johnny had acute lymphoblastic leukemia and treatment must be started the following day. Johnny’s protocol, or length of treatment, was 31/2 years – he was what doctor’s considered ‘standard risk’ (not high or low risk) with about a 75% chance of being a long-term survivor. Doctor’s never use the term “cured”, because when you have been diagnosed with cancer, there is always the chance of a relapse. Everyone was confident Johnny would definitely be a long-term survivor.

Leukemia is a blood cancer and affects your platelets – you need them to clot your blood if you scrape your knee or bruise — things skaters do on a daily basis. Once Johnny’s treatment started the doctor’s warned us, “nothing with wheels” because of the high risk of internal bleeding or breaking a bone. Johnny has never been one to relax, so the doctor’s orders didn’t seem to make much of an impact on his skating skills, or ability. We kept Johnny’s skating on the ‘down low’ and when he was strong enough, my husband Mike, Johnny’s dad — took him to the skate park during the day when other kids were in school. Johnny always wore a helmet and never took any risks – he only tried things he was confident about landing.

Skating was his outlet, his release and made him feel like a normal kid again – not the kid with cancer. It didn’t take long before Johnny became really good at it too. Finally, one day it happened, Johnny fell and injured his arm. He’s never been a kid who cried – always a happy baby, easily soothed and even during chemotherapy treatments ,IV’s and ports, bone marrow aspirations and spinal taps – he never cried or complained. But the arm injury brought him to tears. I knew I had to take him to the hospital. The jig was up. We had to tell them Johnny was skating.

At the hospital they took an x-ray of his arm and determined he fractured his elbow. The doctor’s slapped a cast on his arm and begged him to stay off of the board for six long weeks. This time Johnny listened. He wanted to get well so he could skate again – all the while he was still receiving chemo and counting the days until this ‘leukemia thing’ was behind him.

Johnny & Jim The Make A Wish Event

One day his dad took him to a friends skate shop and noticed a flyer for the Texas Skate Jam for Make A Wish. Johnny was also a Wish kid — his wish was to watch the Pipeline Masters, a big surfing contest, on the North Shore of O’ahu (Johnny also loves surfing). Plans were soon made for him to attend the annual skating event held to raise money for the Make A Wish Foundation – and to get to the event before the doors opened to the public so Johnny could meet and skate with the pros. He was stoked. Surprisingly, it wasn’t so much about skating with pros, but it was more about being able to have the park all to himself, without the crowds. As he skated with the pros, he met a guy named Jim Theibaud who seemed to take an interest in Johnny’s smooth style and pure love of the sport (Jim also has a son close to Johnny’s age). As Jim watched Johnny skate the park like he didn’t have a care in the world, he thought about how brave Johnny seemed – not like a kid who has a life threatening illness.

At the end of the Jam we exchanged numbers and went home. We never really expected to hear from anyone – but a few days later Jim emailed us to check on Johnny and his treatment. We struck up a friendship and began emailing and keeping Jim up to date on Johnny’s progress. When Johnny hit a hard part of treatment, Jim would post something on his company’s website to cheer him up. Then one day when treatment started to really hit Johnny hard, Jim asked if it would be okay if he made Johnny his own signature pro model skateboard – his own logo and everything. Just to cheer him up. Of course we agreed and when Johnny saw the design, he was smiling ear to ear.

Jim decided to take it to the action sports retail show to see what sort of reaction he would get — the response was overwhelming — everyone loved it. Jim asked Johnny if he could make a few more boards to sell and what he should do with the proceeds. Johnny gladly gave Jim the okay to make as many boards as possible – with all proceeds going to the Make A Wish Foundation. The first run of 50 boards turned into another, and then a run of 500 with requests of more. That was in 2006, and the boards are still being manufactured today raising over $20,000.00 for the Make A Wish Foundation.

Johnny’s treatments were going smoothly. The doctor’s credit his love of skateboarding and the ability to focus on something other than treatments that kept him so healthy. Most kids with cancer don’t have an outlet, hobby or release to focus on, and they tend to become isolated, introverted and tend not respond well during treatments. Johnny was just the opposite – he never wanted anyone to know he had cancer, or ached or pained, or missed school because of chemo. He wanted people to know him as the youngest pro skater ever.

Although he enjoyed the title he never boasted or bragged. I told his friends about his board! Like everything Johnny did, he kept things low key. Months turned into years and his last day of treatment seemed like it was within reach – September 23, 2008. Again, in May 2008, our lives changed forever. Johnny relapsed.

The Relapse

It was during a routine clinic visit one Friday that the doctor’s confirmed that Johnny’s cancer had relapsed, but to go home and ‘enjoy the weekend’, because Monday morning he would start intensive treatment to prepare for a bone marrow transplant – his only hope for survival.

So we did. We called all of our friends and family for a weekend of fun, paint ball, burgers on the grill, music and of course lots of skating. A close friend of ours, Rhonda, was on a committee to build a public skate park for the city of Galveston, for well over 5 years. It was near completion, it only needed a few finishing touches and remained closed. Rhonda knew people – she had been working with the City so long on this project, they exchanged Christmas cards and emails and were on a first name basis. Rhonda put a call into the mayor’s office to ask about bending a few rules ‘just this once’ for Johnny.

Early Sunday morning, the day before Johnny was scheduled to start re-induction chemotherapy, the City of Galveston opened the skate parks gates — just for our little guy. He was stoked. Weak from the cancer eating away at him, he only lasted about an hour before he said he was too tired to skate. Little did we know it would be the last time he would ever skate again.

Treatment started Monday morning followed by surgery for his new port. The protocol for relapsed ALL is 2-3 months of heavy chemotherapy, once his leukemia was in remission he would immediately have a bone marrow transplant. Knowing how difficult a bone marrow transplant is on a child, their organs and essentially their family, I asked if there were other options – something other than transplant. But the answer is unfortunately ‘no’. Once a child relapses during treatment (even though Johnny was almost finished with treatment) — they are considered high risk and a bone marrow transplant is the only treatment plan.

Friday was Johnny’s first day home after a full week of in-patient chemotherapy. The weekend went okay, but Mike and I could tell the chemo was hitting Johnny hard. It was Memorial Day, and I was up early sorting my thoughts for the upcoming months of treatment, Johnny’s bone marrow transplant, and what it meant for our entire family. Then, Johnny stumbled into the kitchen, immediately threw up and collapsed on the floor. He had a temperature of 104. He and looked and felt awful.

Mike and I jumped into high gear — Mike rushed Johnny to Texas Children’s, I would meet them there once I found someone to take care of Joey and Sophie. When I caught up with Mike and Johnny, they already had a room in the ER. Johnny was stable but under the watch of many doctor’s and nurses. As they pumped his little body with anti-biotics things quickly started happening – Johnny was going into septic shock and his blood pressure plummeted to 60/13 – they were certain they would lose him.

But Johnny fought hard to stay alert and awake the entire time. He was too weak to talk to us, but answered our questions by nodding his head or shrugging his shoulders. Once the doctor’s stabilized him, he was moved to ICU until he could regulate his blood pressure on his own without medication — life supporting medication. He fought hard and miraculously survived. The doctor’s couldn’t believe it. Mike and I knew Johnny would fight – he was a skater, a bit scrappy, and loved to prove people wrong.

When the skating community found out Johnny was back in the hospital, the out-pouring of support was phenomenal. Cards, letters, care packages and even skaters came from around the world to wish him well. Texas Children’s has a system that only allows friends and family members to send patients cards via email. The cards are printed and given to the child. In one day – Johnny received over 200 cards from well-wishers around the globe. Some were written in Italian or Japanese – almost all were from skaters. Johnny received a card from every continent on the planet and nearly every country – Africa, China – you name it. All supporting him and cheering him on.

Professional skater, Steve Berra and Eric Koston, who have a well-known skateboarding site filmed ‘invitations’ asking Johnny to skate their secret park, the Berrics. Phone calls poured in from Jamie Thomas, Danny Way, Jake Brown, Tony Hawk, and Guy Mariano. Skin Phillips of TransWorld Skate magazine, dedicated the TransWorld Award show to Johnny and made him honorary Skater of the Year. Jamie Thomas made a Johnny Romano shoe – with all proceeds to benefit the Make A Wish Foundation as well.

The Last Four Months

Mike and I couldn’t believe the support. We were impressed with the pros that called, special awards given and invitations Johnny received – but Johnny wasn’t. I mean, he thought it was cool skaters called him or invited him to skate secret spots, but to Johnny it didn’t matter who it was, it only mattered that they shared the same passion –skateboarding. Johnny didn’t care if someone was pro or if it was the kid off the street, as long as they wanted to talk ‘skate’, he was stoked. That is what kept him so strong through his treatments.

Over the next 121 days, there were ups and many, many downs. Infection after infection, numerous spinal taps and bone marrow aspirations, most of the time was spent in ICU. Through it all Johnny never complained and when his acute lymphoblastic leukemia morphed into the more sinister acute myeloid leukemia, he never lost hope that one day he would skate again. The diagnosis of a different leukemia is unheard of during treatment – Johnny never stopped baffling his doctor’s – with his resilience or with his leukemia.

Tuesday, September 23, 2008 was supposed to be Johnny’s last day of treatment had he not relapsed, but instead, he slipped into a coma and passed away a few hours later. Again, the skating community rallied around Johnny and that day, we received over 10,000 hits on our blog. Jim Thiebaud and Jamie Thomas came in to help celebrate Johnny’s life with us. We ‘tagged’ Johnny’s fire-engine red casket with “Johnny Romano” stickers Jim made just for us.

Our hearts still ache and the pain is crippling knowing we will never see Johnny skate again. Mike and I talk of the good times and the many lessons Johnny has taught us all: Live life to the fullest, don’t procrastinate, always have fun and no matter what anyone tells you about skaters, they are the kindest most caring people on Earth. Roll Forever

In the aftermath of Johnny’s passing, Mike and I wanted to start JohnnyKicksCancer — ensuring other children, parents, siblings, even doctor’s and nurses — wouldn’t have to go through what our family did during our fight with childhood leukemia.

We realized when people hear childhood leukemia is ‘common’, they assume there is a cure. There is not yet a cure for the most common childhood cancer, leukemia. There are only long-term survivors with life-long health issues stemming from harsh chemo-therapies.

Common doesn’t equal cured.

You can read about Johnny’s and our family’s journey from the beginning, by going to the blog on the JohnnyKicksCancer website.