We are Team…
We are Team Mac Howard. We are Team Colin. We are Team Super Jake and Team Parker. We are also, Team Angela. More important than team, we are family. We are the Histio Family. We are all united by a blue ribbon, which we wear on our sleeves and in our hearts. We know what it’s like to have sleepless nights and restless days worrying not only for our own child but for the child of our histio family. We fight, pray, and cry for ALL of our histio kids. We mark our calendars with not just our own kids’ chemotherapy schedule, scan dates, and procedures, but for those of the other histio kids—because they are ours, too. Physical distance my separate us but we are on one another’s hearts and few know us so closely and so intimately. I’m not exactly sure why certain families connect so strongly but we do and for that, I am thankful. Sometimes, I will be trapped in a thought and someone will text me, call, me, email me—they will snap me out a darkness that I have no business being in and I love them for that reason alone.
Team Mac Howard is only ten months into our histio journey (though at times, it seems so much longer). We have had the pleasure of befriending Team Colin. Team Colin rocked our world. I think it is fair to say Colin grabbed my attention because he was receiving treatment at Children’s of Alabama, Birmingham, where Mac was diagnosed and received his first twelve weeks of chemotherapy. When I think of Colin, I think of his smile. I can see the hallways in which his family walked for my family has walked them, too. I wonder if they sat in the same “holding area” before sending Colin into surgery as we sat while not wanting to let Mac out of our sight but reluctantly doing so. I often wonder if they had the same nurses, the same doctors, and the same Family Resource personnel like Michael* who would come in and play the drums. Though Colin will forever be a part of our histio family, he was fighting a much tougher battle than Mac. Colin was diagnosed with HLH (Hemophagocytic Lymphohistiocytosis, which yields a mind-blowing 50% mortality rate. Colin refused to give this disease any recognition of power, insisting it being referred to as “hlh,” (all lower-case), when referring to this horrific disease. How can you not like a kid with that attitude?! He had an attitude worth having. Did I mention he was six? Though we were only able to correspond with Colin via mail, we were blessed enough to be sent his picture with the “HERO” card we sent him. “HERO” is a title worth capitalizing. As of January 9, Colin also has the title of “ANGEL.” I think it is fair to say the Histio-Family was absolutely shattered by Colin’s passing. Colin and his family remain so heavy on so many hearts. His family has vowed to keep the fight of awareness going and to find a cure. I can assure you his death will not be in vain and his Histio-Family will carry on for him. (To learn more about Colin and his family’s commitment to spreading awareness, please visit Team Colin)
We love you, Colin. Hope. Lives. Here.
Team Super Jake also holds a soft-spot in my heart. How can I not feel a connection to a family who gets to experience the beautiful-ness that is East Tennessee?!! The Air Force may take us many places but Tennessee will always be home. While staying with my parents (we were in-transit to Boston), we got to meet Team Super Jake as he was receiving treatment at East Tennessee Children’s Hospital. First impressions are lasting friends, and let me tell ya, Jacob is a first impression worth having. This young man is so sweet, so well-spoken, so brave, and…he has the face of an angel. Jacob was so willing to verbalize what he was experiencing, how the treatments made him feel, etc., which was (and still is) important to me since Mac cannot tell me. Jacob has a sweetness that you see instantly on his face. And his momma…let me just say…I love her. She is a constant source of love and support and if I could have her closer, I would stick her in my pocket in a heartbeat. (to learn more about Jacob, please visit Jacob’s Journey).
Team Parker is also receiving treatment in Birmingham at Children’s of Alabama. Parker is nothing short of a superhero and he has the wardrobe to prove it. Similar to age as Mac, he also has an older (and undoubtedly wiser) threenager as a sister. It is so obvious to state my connection to this family—even if you were to take away the histiocytosis disease (which God knows I would love to), this house undoubtedly experiences the day-to-day crazy we experience at the Howard House!! Parker, like many kids I have come to know, chose life. He choses to smile. He sees his obstacles and he climbs over them…smiling. He’s been on the toughest of roads and still has a tough road ahead of him but he and his family embrace it with love, determination, hope, and faith. Team Parker, if I could hug your face at this moment, please know I would. I love you through the miles and cannot wait to see you on the other side.
Team Angela. I pray for you every day, baby girl (as I do your mom, dad, and family / friends). Your parents love you so much. Your parents love you so much they are on a mission of hope to spread awareness of your (our) “rare” disease…I have no doubt they are ready to move you across the country to bring you to the best doctors…if it were only that easy. As a parent of a child with a “rare” disease, I’ve come to realize that there is nothing rare about histiocytosis. It consumes every free thought, hope, and desire that ravages your heart and mind. An “orphan disease.” Orphan…that’s what they call your disease. This is what happens when numbers take the place of human lives. Government funding need not apply if the numbers don’t meet the quota. It loses all meaning. Percentages and statistics preside over your child’s name: Mac, Colin, Jacob, Parker, Angela, and the rest of my family…You are only 1 in 200,000 Americans so we can’t help you. I’m a disgusted parent. A disgusted American. “Happy” Rare Disease Day.
Rare Disease Day is today (February 28). What are you doing to aid in awareness? Odds are, you’re not doing enough. Neither am I. And that is NOT okay. Do more than buy a shirt. Do more than pray. In fact, go ahead and send a letter to your representative, as well, and let them know that EVERY child matters and that “orphan” does not belong in the title of children with a rare disease. Mac, Colin, Jacob, Parker, Angela, Rio, on and on it can go. These are not numbers, they are our Team and our Family.