Hart to heart, p.17

  Hart to Heart, p.17

Hart to Heart
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  “Can we go to camp with Bri this summer, Daddy?” he asked as he finally gave in to sleep.

  I chuckled. “We’ll see, buddy,” I said as I tucked the blanket in around him. “I hope so.”

  I heard a sniffle behind me and turned to see Addison shuffling back over. She had tears running down her face too.

  “I take it you heard all that?” I asked, still wanting to drink in the moment.

  She sat down and started touching Jax again. “You know how they say moms have several moments with their kids that they will always hide in their hearts and never forget?” I nodded. My mother used to tell me that every once in a while. “That was definitely one of those moments.”

  We sat quietly again for a while, lost in our own thoughts, watching Jaxon sleep. His time was running out and we both knew it. Because there was nothing we could do, we were just content to sit quietly together.

  A while later, there was a soft knock on the door. We turned to see Kristina stick her head in.

  “Hey,” she said quietly. “Do you guys have a second to come chat out here with me?”

  I took a deep breath and stood up, bringing Addison with me.

  As we stepped into the hall, we knew that any news Kristina brought us could be really good, or really bad. At this point, it could go either way. I put my arms around Addison as she wrapped hers around my waist. We were clinging to each other, bracing ourselves for the worst.

  “I’m going to get right to the point and not drag it out,” Kristina said. “The results of the test came in. The cord blood isn’t a one hundred percent match.” I held my breath. “But it’s close enough that we can use it and probably will be able to do so successfully.”

  My eyes closed, and I felt myself breathe out. Addison stayed quiet. “So we can use it…but are we allowed to? Legally.”

  “I just got the call.” Kristina smiled. “It’s been approved by both the CDC and the IRB, so it’s time to get those signatures from you now.”

  I felt myself begin to cry, feeling Addison shaking as she did the same.

  “It will take us a few days to set everything up,” she continued. “But we’ll do the transplant within the week. Congrats, guys. We did it.”

  Burying my face in Addison’s neck, I couldn’t contain the sobs that came out of me. Jaxon, my son, finally got a match. His baby brother—the surprise baby we weren’t trying for, the baby Addison worked so hard to carry to term—was probably going to save his big brother’s life.

  That tiny spark of hope I had when this had all started so many months before was back. And it wasn’t so tiny anymore.

  Less than a week later, the transplant went off without much of a hitch. It took a couple days for Dr. Bates to be sure the cord blood was doing what it was supposed to do, and that Jaxon’s body was responding well to it. It would take months for Jaxon to be back to normal. He had lots of weight to put back on and some hair to grow, but within a few days, he didn’t need as many pain meds and his skin started to return to a more normal color.

  Even ten days later, I still wasn’t allowed to see him very often, because being a post-transplant patient, he was basically in isolation. And even then, I had to beg Dr. Bates to make an exception. Anytime I entered the room, I had to be thoroughly scrubbed down and dressed in sterile clothing, always, always wearing a mask over my face and gloves on my hands. Any sniffle or sneeze meant I was denied for a full twenty-four hours. It was brutal but necessary.

  “Hey bud,” I said as I walked in the door of the hospital room he had been in for so long. “Whatcha doing?”

  “Playing Minecraft,” he said, not taking his eyes off the TV.

  “How’re you feeling?”

  “Um, I’m kind of hungry, actually.” Still no eye contact.

  “Really? That’s a good sign. What do you want to eat?”

  He was quiet for a minute, probably distracted from food by the creeper who was stealing all his tools, or something like that. Finally, he paused the game.

  “I want a really large cheese pizza,” he said, eyes wide as he described it. “I want to have lots and lots of cheese on top. And I want it to have cheese in the crust, like that kind we saw on TV. Can we have that, Daddy? Please?”

  I smiled at him. I would never get tired of hearing him call me that. Ever.

  “I’m not sure Dr. Bates will approve of delivery quite yet. But tell ya what,” I answered. “Why don’t I see what kind of Jell-O crap they make you eat today and then we can Facetime Deuce and watch him eat the biggest pizza like that that he can find. We’ll have some men time. Maybe we can even patch in your Pee-paw.”

  “Oh yeah. I guess Deuce doesn’t have that much practice anymore since they didn’t make the playoffs,” he said somberly, obviously not happy over the pizza. He could have pitched a fit about it, but he was a real trooper about it all.

  I chuckled. “Just don’t remind Deuce about that. He’s still pretty upset by that loss to the Ravens. We wouldn’t want to make him cry.”

  “Deuce cries?” Jaxon asked, eyes wide.

  “Only every year when he doesn’t get that Super Bowl ring,” I said, standing up and clapping my hands together. “So, we’ll put in that call, but in the meantime, I have a surprise for you.”

  “You do?”

  “Yep. Feel like taking this wheelchair for a spin?”

  “Sure,” he said. “Can I put on some shorts first? I’m tired of so many people seeing my butt.”

  I snorted. “Sure, buddy. We can’t have that.”

  I helped Jaxon into the bathroom, where he could do his business and put on some shorts in privacy. Once I got him set up, I made a quick call to Deuce while I waited for Jax to get ready. He was still really weak, so it took a while. But one thing about Jaxon…he was determined to get back to normal. Even if that meant some very slow practice on everyday things like using the bathroom.

  “Dad!” he called out. “I’m ready. Can you help me?”

  I rolled the wheelchair up to the bathroom door and helped him shuffle over to it. Once he was settled, we got him all geared up as well. We’d gotten special clearance to leave the room since we were headed straight to another sterile environment, but I didn’t want to pick up any unnecessary germs on the way.

  “Where are you two headed?” Bri called as we wheeled past her station.

  “Just going on a little road trip,” I called back.

  I heard her laugh as we made our way around the corner. “Have fun!”

  “Where are we really going?” Jaxon asked as we made our way inside the elevators.

  “It’s a surprise, buddy!”

  “It better include that cheese pizza,” he said, making me chuckle.

  Once we reached the fifth floor, I pushed him down the hall and stopped in front of the door.

  “Here, bud,” I said, reaching for his wrist. “I need you to put it on.”

  “What is it?” he asked as I put the plastic bracelet around his wrist.

  “You’ll see.”

  As I pushed open the door, Kristen looked up. “Hey there, Jason! I see you brought company.” She walked over and scanned our wrists like normal.

  “Kristen, this is my son, Jaxon. Matty’s big brother.”

  “It’s very nice to meet you,” she said with a smile. “Would you like to meet your little brother?”

  “I can see him now?” Jaxon asked with a huge grin, peeking out from behind his mask. “We’re here to see the baby?”

  “Yep,” I answered. “Dr. Bates said we can’t stay long, so you don’t overdo it. But he said it’s okay for us to come up for a short visit since it has to be super clean in here, too.”

  “Yeah!” Jaxon half yelled, half whispered. It was clear he realized where he was and didn’t want to disturb any of the babies.

  As we strolled through the NICU and headed to our little corner, Jaxon looked around, wide-eyed at all the incubators. “Do all of those things have babies in them?” he asked.

  “Most of them,” Kristen answered. “When a baby is born too early, they have a hard time staying warm. So we keep them in the incubator to keep them nice and toasty.”

  As we rounded the corner, we saw Addison sitting in the rocking chair, wrapped up in a kangaroo hold. When she opened her eyes and saw us, her face lit up with the biggest, brightest smile I had seen on her face in a while.

  “Hey guys,” she said as she rocked. “Are you here to see the latest addition to our family? Kristen, can you hand me a face mask?”

  I wheeled Jax up right next to Addison so he could see Matty up close and personal as Kristen helped Addison get the mask on.

  “Wow,” he breathed. “Is that him?”

  “It is,” Addison said. “Jaxon, meet your new baby brother, Matthew. Matty, this is your big brother, Jaxon.”

  “Hi Matty,” Jaxon said, his entire focus on his new brother. “Can I touch him?”

  “Sure,” Addison said, shifting the blanket a bit. “Since he still has all these wires stuck to him, why don’t you start stroking his hand and his arm. He likes that.”

  As Jaxon reached over to touch the baby, Matty opened his eyes and looked right at Jax. As if he knew this was his brother, Matty grabbed onto Jaxon’s finger just as he started stroking his little fingers.

  “He’s so tiny, Mom,” Jaxon said, looking at up at her with concern in his eyes. “Is he gonna be okay?”

  “He’s gonna be just fine,” Addison said as I pulled out my phone and started taking some candid snapshots. “When babies are born this little, they just need a little extra help finishing their development. So he needs to grow a little bit more in the hospital like he should have done in my belly.”

  As I listened to Addison explain what every single wire and tube did, I couldn’t help the overwhelming feeling of joy I was having. Yes, these were private moments between us, but I wanted so bad to send them to Adam and have him post them everywhere. I was so proud of these three. Jaxon for hanging on until we could find a treatment. Addison for pushing through until Matty was ready to be born. Matty for coming to us at the exact right time to save his brother’s life. I was so full of pride I almost wanted to burst.

  My family had made it through a terrible time. Arguably the hardest time we would ever have in our lives. But not only did we do it, we came out stronger. And a bigger family unit.

  Deuce could have that ring if he wanted. No Super Bowl win would ever compare to this.

  I walked through the tunnel at Mile High Stadium. Immediately upon stepping on the field, I heard the crowds roar. I looked around, absorbing the fans decked out in their favorite jerseys, waving foam fingers in the air.

  So this is what the Super Bowl looked like from the field. It was like a dream come true.

  Except it wasn’t my Super Bowl.

  Jaxon and Matty were both still in the hospital, but they were doing well. And Addison and I had agreed that this appearance was too important for me to miss.

  As I made my way over to the fifty-yard line, dressed in my street clothes, I heard the announcement begin.

  My name is Jason Hart. You may know me as the defensive lineman for the Dallas Cowboys, but you may not recognize me playing the more important role in my life…the role of Dad.

  I looked up at the Jumbotron to see various pictures of me and the boys scroll by. There were shots of Jaxon decked out in his Cowboy gear. One from that Halloween a couple years ago when he was a football player and I was a banana. A good-looking candid from the wedding when we both wore tuxedos. And several of him in the hospital.

  As you probably know, my nine-year-old son, Jaxon, was diagnosed with Acute Lymphoblastic Leukemia, or ALL, last summer. While ALL has a ninety percent cure rate, Jaxon was one of those who had to fight a little harder than most.

  My eyes welled up a bit as the montage of Jaxon in the hospital started. He was still there. It had only been a couple of weeks since the transplant. But he was improving so quickly that seeing pictures of him so sick was surreal.

  When our attempts to find a bone marrow donor for Jaxon within our family failed, we began looking at outside resources like bone marrow donation registries. What we discovered was a severe lack of donors to meet the growing demands of those with childhood cancer. That’s when the idea for Hart to Heart was born.

  Our goal is to bring awareness of this need to the forefront of the public and to encourage people to join the bone marrow registry. Won’t you please join us on this very important quest?

  Our miracle finally happened with the birth of our second son, Baby Matthew. You can be the miracle for another child in need. You can save a life. Please consider joining us by checking out our website, harttoheart.net.

  I got to the fifty-yard line and smiled as I saw Roger and Joy join me.

  “Hey, man,” I said, shaking his hand and clapping his shoulder. “How’s it going?”

  “It’s great,” he said as I hugged Joy. “Thanks for doing this for us. We haven’t had a vacation together in years, so this is really nice. Thank you.”

  “No problem,” I said as I was handed a microphone by one of the stadium staff members. “This wouldn’t be happening if it weren’t for you.”

  “What do you mean?” he asked.

  I smiled as I heard the announcement start. Ladies and Gentleman, please welcome Jason Hart, who is joined by Roger and Joy Chilla.

  As we waited for the cheers to die down a bit, Roger looked at me like he couldn’t figure out what I was up to. He knew part of why they were here. I wasn’t going to start spouting off personal information in front of millions of spectators around the world without their permission. But they didn’t know everything.

  “Roger, Joy, we met under the worst circumstances people can ever meet…while fighting for the lives of our children,” I began consciously trying to not lower the microphone while I was speaking into it. “But a particular conversation we had in the hallway of the children’s oncology ward at Texas Memorial Children’s Hospital really stuck with me. It changed the way I look at certain issues.” The stadium attendant handed me a shiny, wooden plaque. It had a new logo and a picture of their baby girl, Iris, smiling wide for the camera.

  “I am proud to present this plaque to you as a way to honor the newest department in the Hart to Heart organization, called Iris’s Umbrella.”

  I handed it to Joy and watched as Roger put his arms around her when she wiped away the tears that had already started falling.

  “It is because of Iris that this particular issue was brought to light. As you informed me, so many families are stuck between making too much money to qualify for any assistance on medical bills, and insurance that has already been capped and won’t pay for any more treatments. We hope we can honor Iris’s memory by providing some much-needed assistance to those families.”

  “Thank you,” Roger mouthed through his tears.

  “Don’t thank me yet,” I said. “There’s more.”

  Roger and Joy both looked up at me in surprise. What they didn’t know is that in its short life, Hart to Heart had raised more than just awareness to the issues of bone marrow donation. It had drawn in millions of dollars in donations. So much so that Adam had already hired a director and a financial officer. In total, Hart to Heart already had six paid staff members because it was growing so rapidly.

  “As the ones who sparked the idea for the Iris’s Umbrella division, we thought it was only fitting that you guys also be the very first recipients of its assistance.” I paused to hand them an oversized check, made out to them. “Our treasury department has been in contact with the hospital, and as of this morning, all of Iris’s outstanding medical bills have now been paid.”

  As the crowd roared, Roger’s and Joy’s eyes went wide, and their mouths dropped open.

  “Are you serious?” Roger asked.

  “It’s all covered,” I said, handing the mic back to the attendant so we could talk more privately. “Hospital, doctors, surgeries, everything. You guys are in the clear now.”

  “I….just…” He finally gave up what he was trying to say and came in for a hug, Joy following closely behind him until the three of us were in a bear hug together, the two of them crying and me trying not to start boohooing too.

  It was one of those moments that I knew would be imprinted on my brain forever. And I realized if this was the only time I ever stepped on the field during the Super Bowl, it was worth it.

  “I can’t believe you talked me into this,” Deuce complained as we walked across the grass towards the pavilion. “I have sweat in my butt crack. Do you know how much I hate butt sweat?”

  I chuckled. “Don’t even try to convince me that you aren’t having a good time. It’s the best time of the year, man! It says so in the camp song we sing every morning!”

  He grumbled as we kept walking towards our dinner. It was our fifth night at Camp HopesALot, the pediatric oncology camp Jaxon had wanted so badly to attend.

  As soon as Jax was released to go home after his transplant, I’d put in a call to Bri, who made sure we were contacted when it was time to register. She also let me know how badly they needed volunteers, especially male volunteers. So Deuce and I signed up.

  We all agreed it wouldn’t be the best thing for us to be camp counselors. Especially Deuce. No telling what kind of chaos would occur if he had access to twenty little boys who were liable to follow him into whatever prank he could come up with.

  Instead, we were running a football clinic out on the big field to the west of the camp. July in Texas is brutally hot; everyone knows that. But July, near Dallas, when you are standing out in a field all day long, chasing around a bunch of rowdy campers with virtually no shade… Well, let’s just say that neither of us would ever complain about the heat at training camp again.

 
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