As Long As We Love Each Other

As I lay awake tonight I can’t help staring at Cooper. Since Jack’s journey started he no longer sleeps in his bed - a small problem that we will have to tackle when this is all over. But from my current angle he is perfectly in ¾ profile, so I have the best view of his adorably sloped nose, he ridiculously long lashes, and his cute cheeks that keep him looking like a baby despite the fact another birthday has just passed. I really should be sleeping because we go back for Round 3 tomorrow and I know it will be a long day, but after two glorious weeks at home, I just don’t want our glimpse at normalcy to be over just yet. So I grab my phone and start typing, figuring if I am awake anyway, maybe I’ll put my time to good use and give everyone an update.

I was at work two Mondays ago when I got the text that Jack’s ANC was 410 and he’d be coming home. Jack hadn’t been home since May 5. I literally couldn’t help myself and started telling everyone I saw. I was dancing around singing “410! 410! 410!” and doing high kicks like my old DHS cheer days. I watched the clock all day and rushed home as soon as I could to see my boy at home. We decided to have an impromptu party. The weather was beautiful and it was time to celebrate. That night, once the boys were settled in bed, I texted my dad that I wanted to take him the next day to see my Grandma. What I didn’t know at the time was that my dad had just rushed my Grandma to the hospital as she had called him to tell him she was having chest pain... A massive heart attack… and he didn’t want to ruin the high I was on by having my family finally together. By the morning he called me to tell me instead of visiting Grandma with Jack, he would take me to see her in the ICU.

My Grandma Earley is a special kind of person. One who in my opinion we need so much more of in this crazy world. There isn’t an ounce of hate in her, okay maybe a little for stray cats, but I bet she’d help one out if push came to shove. My Grandma is the kind of person who is constantly thinking of others. Now by others, I don’t simply mean her family. My Grandma is thinking of the mailman, the gal she met in the grocery store, my best friend’s mom, and countless others. Almost every time I visit, which is often because she makes my heart feel so happy when I’m with her, she asks about my friends and remembers little facts about our previous visits and people we discussed. She’s that kind of gal who would never, I mean never ever in a million years, forget a special day. She makes the world a better place just by being herself. And she inspires me to be kind and love others every single day.

When Dan and I were planning our wedding, we didn’t have traditional PreCana classes. Instead we simply met with our priest a few times to go over things about the wedding and talk about life. One week we took that marriage compatibility test. The next meeting our amazing priest looked at Dan and I with grave concern over one part of the results. He mentioned how Dan and I both answered the question about how as long as we loved each other, everything would be okay, as something we strongly agreed. He looked at us like we were crazy and naive. He said, so you’re both living in the streets hungry, everything’s okay? The funny thing is, Danny and I never wavered on this answer. That day, I went to see my Grandma and told her the story. She was in shock. Of course everything will be okay as long as you love each other! She couldn’t believe it was even being questioned. Months later, when we were opening our cards on the day after our wedding, in the beautiful handwriting that only a grandmother could have, I read the worlds “Always remember, as long as you love each other, everything will be okay.”

As I entered the hospital room, I couldn’t tell who to be concerned for more, my amazing Grandma, laying in the bed, or my poor Grandpa, who looked a wreck seeing his first and only love this way. But after a few minutes of chatting about life as if we were in her parlor instead of the ICU, my Grandma, in her own beautiful way, told me she was just fine. A nurse entered the room to give my gal her medicine and meal. Like she always does, my Grandma checked on her people: “Hi honey, how’s your headache?” That’s right, Grandma who had just survived a massive heart attack, was worried about her nurse’s headache. I knew then and there she’d be just fine.

On our way home from the hospital, I got a text from Dan to call him immediately because CHOP had called. Part of the plan for Jack’s time home was for us to go to CHOP to talk to the Bone Marrow panel. Just before Mother’s Day, we had learned that Cooper was a perfect match for his brother and we had been anxiously waiting to find out what the plan would be - something that had been in the back of our minds constantly. When I called Dan, he happily told me that CHOP said that at this time, Jack could skip the marrow transplant and stay the course with chemo - a big win for our boy and his big brother. My Dad and I couldn’t even hold back the tears.

In the days that followed, we played so much. In the first time in forever we didn’t have a single rainy day and Jack was able to enjoy the fresh air and spend as much time as he demanded on his swings. We enjoyed every minute of normal then packed the cars and got ready to go back for Round 3. If you think packing for a weeks vacation is rough, try packing your baby for a month in the hospital. We try to bring anything and everything to make him happy - toys, decorations, snacks, more toys, music, did I mention toys? Monday morning we went in for customary bone marrow biopsy and spinal tap. Yes, these major things have become par for the course when it comes to Jack’s care. Something that scared the hell out of us the first time around is simply looked at as a way to see how our boy is doing. We play in the sedation room, whether it’s with a new toy or by spinning around in a computer chair until we can’t bare the dizzying effects. It’s amazing what we are able to handle now that would have been so terrifying BC - that’s before cancer. To our surprise, instead of being admitted to our second home (they even had Jack’s same room ready for us), we were sent home because his counts weren’t high enough to get knocked down by the chemo. At first we were scared, but the doctors assured us this was normal after round two. So we drove back to Dunmore for another week home as a family.

During his time home Jack has gone from taking baby steps to taking over the whole house. He strides from one place to another with an assertive nature that screams, “I’ll show you who’s sick!” He got to see two of his brother’s tee ball games - like a normal little brother. He slept in his own cribs with no IVs, monitors, or midnight vital checks to wake him. He got to see my Grandma, his biggest fan BC and his greatest cheerleader now, who is home with her boyfriend, my Grandpa. He got to be a kid - playing in the yard with his brother, getting reacquainted with all his toys that didn’t make it to the hospital, getting in trouble rummaging through cabinets, and being with friends. Then there were times when people saw him and had a look of horror on the faces - scared to see him home when he is sick, scared to get him sick, and questioning our parenting for having him out of the house. Those moments were hard but not bad enough to take us off cloud nine. There were the sweet times when strangers saw him and had no idea he was sick and let him be just a normal kid for a moment. There were moments where people thought him being home meant he had beaten the Leukemia already, unaware that the match is only half way over at best. Those times I took their congratulations with a big smile. After all, any positivity toward Jack is doing absolutely no harm in my book. Then there was a moment today when an older gentleman greeted Jack and I as we were running errands. He struck up a conversation about a mother’s job never being done. Just before I thought our conversation was over, he said quietly and almost knowingly, “his hair?” I didn’t let my smile fade and I simply said: Leukemia. Tears welded up in his eyes as he said that in a man his age he could handle that, but in a baby like Jack who has barely had a life, that was tough. I smiled and said, “Don’t worry. He’s beating it.” He smiled and said it must be hard on me. Still smiling...Not with a kid like Jack.

So tomorrow Jack enters the ring for Round 3. Another month or so in the hospital. Another month of us being apart. Tomorrow we’ll also know the results of Round 2. Please continue to think of, pray for, and send love to our boy. After all, as long as we love each other, he will be okay.