Todd feeding Ben the day they came home from the hospital.In November of 2007, my nephew Ben came into this world with a headful of strawberry blonde hair. His hair became the centerpiece of our conversations. Whenever any of us held him, it was inevitable that our hands would run through his hair and feel its downy softness. We used to spike his hair straight up and then stare and smile at the chubby little boy sleeping peacefully in our laps. Ben and his mohawk
As he grew, his hair lightened to a beautiful white blonde with strawberry highlights. It was still thick too. Many people referred to him as being a “towhead” because his hair color resembled that of a sun-bleached sandbar during low tide. The cowlick that swirled at the back of his head and the two that clashed right above his forehead conjured images of bygone days when little boys who looked like Opie Taylor or Dennis the Menace would put bullfrogs in their pockets and make mud pies in the backyard. Ben’s towhead
All that changed days before Ben was scheduled to check in to Children’s Hospital for the bone marrow transplant. The doctor had told Katy and Todd (Ben’s parents) that Ben would have to go through a brutal regimen of chemotherapy in order to kill off his immune system and bone marrow, a preparation for his body to accept the new bone marrow he would receive. As many of you know, one of the possible side effects of chemotherapy is hair loss. Both Katy and Todd thought it would be too difficult to watch Ben lose his hair in clumps and be left with bald patches and possibly sores on his scalp. To help all of them cope, they took Ben outside to the driveway and sat him in a chair while Todd lovingly gave Ben his “summer buzz cut”. Ben right before Todd gave him his haircut & 1 week before beginning bone marrow transplant process. Todd shaving Ben’s head. Ben being brave. Showing off his new ‘do.
The shock of seeing his once beautiful head of hair being reduced to nothing but a burr cut made many of us realize there was no escaping the inevitable transplant and everything that goes with it, along with the fear of the constant unknown. I saw photos of his haircut in stages via my sister’s Facebook page. I had prepared myself for it, but when I saw the tuft of hair on the green grass, my heart broke and I began sobbing uncontrollably. Tears fell from my face and spilled onto my neck. I bent over to catch my breath and the tears poured onto my jeans, soaking me through to the skin. I cried because in those few strokes of the razor, Ben had lost some of his innocence. I cried for my sister and brother-in-law and the sheer courage it took for them to deal with this harsh reality. I cried for my parents because Ben is their one and only grandchild. I cried for myself because I couldn’t stop the memories of holding this precious kid in my arms and telling him stories and reading him books. I cried just because I didn’t know what else to do.
A tuft of hair in the grass
Over the course of the following months, we all had a specific role to play in Ben’s care and well-being. Katy took FMLA leave from work and stayed by Ben’s side every waking moment. Our parents took turns visiting and playing with Ben every day at the hospital and eventually paid for the hotel that would become everyone’s safe haven, home, fish bowl, and recovery rooms at once. I too chipped in daily and used all my energy to entertain Ben and allow my parents and sister many breaks from the stress of the entire process. Unfortunately, Todd had to work every day back home (which was 3 hours away) so he and Katy could have the income to pay for the bills that were already adding up. He visited every single weekend and spent and talked with them via Skype almost every day. Still, I’m sure he felt out of place and very angry that he couldn’t take a more direct role in helping Ben deal with the day to day experiences of life in a hospital isolation room or a 2 bedroom hotel room.
Towards the end of the chemotherapy, Ben’s hair (which was already beginning to grow out), began showing signs of the most common side effect. Little wisps of hair were falling in his face, landing in his mouth and causing him to gag. He was getting a few small bald patches, and every time we changed his clothes, more hair shook loose. Todd came to visit on July 4th weekend. Both he and Katy decided it was time to shave Ben’s head completely bald so no one would have to watch Ben’s hair come out in stages and lose morale or feel sad and scared. Todd asked one of the nurses for a razor. They brought him in a wet-dry razor. Todd told me they had to shave Ben’s head slowly as to make sure not to cut his scalp. It took almost an hour and Ben cried the entire time, which upset Todd. When Katy shaved Ben’s head, Todd became angry and began cursing the razor the nurse brought them. He told me that he knew it wasn’t the nurse’s fault, but he had to put his blame and anger somewhere because it was upsetting him and he felt like he had to get mad at someone so as to not break down. When they finished shaving his head, Todd says he remembers thinking that Ben had even a bigger head than before. Though it was odd to see his son completely bald, the fact that his head was nice and round was a great relief to him. Ben finally had a chance to look in the mirror and see what he looked like. He laughed and touched his head and simply stared at his reflection. Ben had such a positive attitude and wasn’t upset by the loss of hair which reassured Todd that they did the right thing. Ben’s hair begins to fall out after chemotherapy. It was more difficult watching him lose his hair the second time around.
Todd returned back home the next day. On his way, he called his sister, Kendra, and told her of his plan. When he got to her house, she brought out her clippers that she uses to cut her own boys’ hair, and had Todd sit out in her backyard. Todd’s buzz cut only took 20 minutes. He drove home and took a razor to it so as to smooth out any rough patches. After that, he showered and when he took a towel to his head so as to dry off, he realized it wasn’t the best idea: a towel to a freshly shaved head is like rubbing Velcro all over your scalp. Todd will tell anyone that shaving his head seemed like the logical thing to do since he was going bald any way. Those of us that know him, know better. This little boy who makes him giggle like a kid, who reenacts Star Wars light saber moves with him, and who melts his heart with the smallest of gestures, is the real reason Todd shaved his head. He did it as a way to show solidarity for his son who was in a fight for his life. He did it for the best reasons of all: for love. Our sweet lil’ pumpkin head Todd after he shaved his head to show solidarity with Ben Todd & Ben sharing a relaxing moment
Many people my age and older grew up with PBS kids’ shows like “Sesame Street” and “Mr. Rogers’ Neighborood”. Little did we know we were learning important life lessons while at the same time being entertained. Watching Cookie Monster inhale his chocolate chip cookies while mumbling, “Yum, Yum, Yum, Yum, Yum, Yum, Yum,” or the red and blue martians saying, “Yep, Yep, Yep,Yep, Yep” or “Nope, Nope, Nope, Nope, Nope,” when discovering radios or telephones or clocks would make us laugh. Yet, listening to Bob or Maria or Mr. Hooper tell us how to love one another and help one another (like when Big Bird’s home got destroyed by a tornado), opened our hearts and taught us compassion.
Later in the day, we would tune in and watch Mr. Rogers change out of his suit jacket and zip up his red sweater, then take off his loafers and slip on his cloth tennis shoes all while singing a song. “Hello, Neighbor” he would smile and say to us, and we would wave back to the TV set and say, “Hi Mr. Rogers.”
These shows have been in our collective consciousness for a long time now. At work, I laugh every time my friend Andy points at his zip up khaki cardigan and says he’s wearing his “Mr. Rogers’ sweater.” I’ve jokingly referenced Sesame Street’s “Which one of these things is not like the other?” to my students when asking them to claim the misplaced books at the front of the room. And at some point in our adult lives we’ve all sang, “C is for Cookie! That’s good enough for me!”
I make the above point because lately, with what’s been going on with my nephew Ben and this first week of receiving the autoimmune suppressant drugs to prepare him for the chemotherapy and later the bone marrow transplant, my brain has been thinking about who he will meet during this journey and how they will take care of him and guide him. The two songs that have been playing a constant loop in my mind the past few days are Sesame Street’s “Who Are The People In Your Neighborhood?” and Mr. Rogers’ “Won’t You Be My Neighbor?” I thought it was odd to have these songs going through my mind, but last night I opened up my small book The World According to Mister Rogers: Important Things To Remember and I realized, “These people are our neighbors in this small community of Children’s Hospital, and we better get to know them because they are the ones we need to learn from and trust.” So, I thought I would share with you a few of the special people we have gotten to know in this very short time.
A few days prior to Ben getting admitted to Children’s, my sister had posted pictures of her husband shaving Ben’s hair in order to not have the shock of his hair falling out from the chemo. I wasn’t prepared to see these pictures, and I mourned the loss of his beautiful, soft blonde hair. I also mourned the loss of something more elusive: innocence? security? constancy? The photo of the tuft of hair laying in the green grass like the soft, sheered wool of a sheep caused me to put my head in my hands and cry so hard that tears dripped through the gaps between my fingers and soaked into my jeans. The weight and the reality of his situation hit me so strongly, and I prayed desperately that he would have nurses and doctors and other people with him that would not only take care of his health, but bring him love, light, laughter, and kindness. People that would fight for and with him during this difficult journey. So far, we have met a handful of people who are doing just that.
On Wednesday, June 1st, my parents and I were in the parent lounge on the 9th floor where the Bone Marrow Unit is (BMT). I was slumped in my chair, quietly depressed because I only got to talk to and see Ben through the ante-room and the glass partitions outside of his room. He had hit his max on visitors that day (Katy, Todd & my parents), and it broke my heart when he slumped over in his bed after I told him I couldn’t come in to see him. He cried when he asked for Sancho and was sorely upset when he realized Sancho and I couldn’t come in to visit him that day.
I was curled up in a recliner in the parents’ lounge feeling a bit sorry for myself and for Ben. Just the day before, he and I were playing outside, walking my dog, laughing and having fun. Now, we’re smack in the middle of his necessary treatments and fun isn’t in our vocabulary at the moment. In the room with us were 3 black women wearing scrubs and watching TV. Immediately, my mom struck up a conversation with them, and we learned their names: Keisha, Rosie, and Chemiere. It was obvious that Keisha was the talker of the three. Through her, we learned that she and Chemiere clean the rooms in 9B (where the bone marrow transplant patients are, and where Ben is right now), and that Rosie is in 9W – the recovery room for post-transplant patients.
Keisha let us know that she had already gotten acquainted with Ben and that they are both Scorpios – her birthday on November 18th and Ben’s on the 19th. She told us that she and Ben are buddies already. I can believe it. Keisha has dark eyes that smile and light up when she’s talking. They’re fierce eyes as well, so don’t get on her bad side she said. She has deep dimples on the sides of her mouth and a constant smile across her face. She told my dad she would “break him down” (meaning she would get him to open up and talk like my mom). It’s working too. Yesterday, I was on the phone when Keisha came into Ben’s room. She said, “Hi Chuck!” and he laughed and happily replied, “Hi Keisha!”
She also snuck in chocolate milk for Ben this past Thursday from the other side of BMT. When his steroids kicked in and he was feeling angry and out of control due to the drugs and his new surroundings, he said to her, “Shut up, Keisha.” She gave him the half-eyebrow raise, the pursed lips look and said, “Mmm Hmmm. I got you. I see you. Mmmm Hmmm. Don’t be foolin’ me boy.” She knew he didn’t mean it and recognized the pain he was going through. He stopped mid-sentence and didn’t know how to reply and later forced back a smile when she gave him the half-eyebrow and half-smile look. Saturday, she came in the room and teased Ben and visited with us for awhile. Ben even flirted with her while he was eating his French toast sticks by putting the serving tray lid on his head and laughing. She gave him the half-smile, half-eyebrow up look and said, “Booyyy. . .” and he laughed and with a mouthful of food he mumbled some words and then said, “Giirrrlll. . .” That made Keisha laugh. Later, she even stopped everything and took me down to the 5th floor Ronald McDonald lounge and showed me where the washer and dryer are.
Rosie and Chemiere both are sweet as well. I ran into Chemiere on Thursday in the cafeteria and she smiled and softly said, “Hello.” She’s very shy, but she has such a lovely disposition and you can feel her watching out for you and know she is listening to everything you’re saying. Rosie is the oldest, and she keeps Keisha in check. I would even describer her acting like a second mother to us all. She’s comforting, kind, but has a tough-love quality to her to which I can relate. But, she can laugh with the best of them. Mom gave all three women that day hand-crocheted washcloths she has been making. They all got to choose one they liked the best, and they all loved the handmade work.
Kari, one of the nurses in the BMT is bringing a lot of strong, determined, but positive energy to Ben. Kari is in her mid to late 20s with blonde hair and a big smile. She has a great sense of humor and a quick wit. She curses with the best of us as well. Anyone who knows me or my family knows that we tend to trust “cussers” a bit more because that type of language usually goes hand in hand with “telling it like it is.” Kari does just that. She doesn’t mince words, but at the same time when she tells us what could happen and what to look out for in the days and weeks ahead, we are grateful for her honesty and it helps us prepare for the dangers ahead. The waters we’re treading don’t seem as deep or scary if we know what’s underlying them.
When she taught my dad, mom, Katy and I how to take care of Ben’s broviac tube (his chest tube where he will receive all of his medicines and blood draws), she not only gave us specific training, but she counseled us and offered us tips that she has picked up from other nurses and parents in this situation. She let us ask a million and one questions not related to this particular training, but she answered them as if they were part of what we were there for. We asked questions ranging from food he can eat, how to bathe him, what will the chemo be like for him, to how we should handle our clothes and food when around him. She was optimistic and humorous about her answers, but counter-balanced them with honest and direct possibilities and challenges we will probably face. She didn’t sugar coat anything, and it was very comforting.
She consoled Katy and coached her through her breakdown when Katy began crying out of frustration on not cleaning “Chester’s” (the toddler training mannequin) broviac tube. We were over-correcting Katy because we wanted her to do it right and feel successful, but Katy told us later that the tears were more from the reality of the situation that just crashed on her shoulders at that moment. Kari made a joke, which made Katy laugh, and like a good coach, she encouraged Katy to take a deep breath and start all over again.
That same day, when Kari went in to check on Ben, he asked her for a train (anyone who knows him knows he’s obsessed with trains). Kari blurted out, “You want a train? Let me see if I can find one.” For about 3 hours she made phone calls to the social worker and other people in the hospital to get him a train, just so she could keep a promise to him. Every time she walked in his room to check on him, he would ask, “Do you have my train?” While we were finishing the training in the parent room of the BMT with her, a young woman brought in a plastic train set in a shiny box. Kari jumped up and grabbed the set. She was so excited. She excused herself and took the train in directly to him.
On Friday (June 3rd), the doctors and nurses were doing their rounds. Katy and I were sitting in the room with Ben. The entry way has an ante-room and then his room. Both are glass partitions and everyone can see us and we can them. Katy mentioned that she felt like fish in a fishbowl. I agreed. She laughed because I was bent over looking at her computer and my butt was facing them. I shook it a little bit. Hey! Give ’em something to talk about, right?
Moments later, a slender and tall Asian-American man in his early to mid 40s walked in the room. His head was shaved and I noticed that he had a perfect long, oval-shaped head. He was wearing his white lab coat and out from it loomed a big green bow tie with blue stripes on it. He introduced himself as Dr. Huang and smiled at the both of us. He updated Katy on what he and his colleagues were talking about outside of the room (it wasn’t my butt). He mentioned to her that his numerous hives and occasional low heart rate were side effects of the drugs, but he is taking exceptionally well to the treatment. He smiled and looked directly at Katy and matter-of-factly told her, “This is a good sign for the upcoming transplant.” My heart raced a little and I felt reassured that this phase is on track and we can transition smoothly into the next, yet more challenging phase: 1 1/2 weeks of keeping him, us, and his room at the hotel and surrounding environment as sterile as possible.
I could go on and on about all the people we’ve met this past week that have done something for us, or just have given us respite from the monotony and anxiety that creeps in on us. From the security guards (especially Clifford with his calming presence, big smile and John and his fancy way with Serbian, Spanish, Indian, Farsi, Japanese greetings and phrases) to the other nurses we haven’t gotten to know as well yet: Tessa, Lauren, Sue, Jess, and Amanda, they have welcomed us in their own ways to this neighborhood -a neighborhood we didn’t want to move into, but one that has become far less scary and strange in such a short time. Mr. Rogers once wrote: “When I was very young, most of my childhood heroes wore capes, flew through the air, or picked up buildings with one arm. They were spectacular and got a lot of attention. But as I grew my heroes changed, so that now I can honestly say that anyone who does anything to help a child is a hero to me.” I second that statement. These are the people in my neighborhood, the people that I meet each day.
Here Ben is wearing his Strong Man t-shirt. The front side is an image of his favorite dog Sancho saying “Yep” a motto Ben uses whenever you ask him if he can do something – no matter how big or small.Ben showing off his Will of 50 Strong Men T-shirt at the American Legion Benefit in his honor.Ben and his buddy Erwin and his Aunt Laurie (aka Aunt La-La) at the Dart Benefit in his honor.Ben & Keisha in his isolation room at Children’s Hospital. Keisha always found a way to get him an extra chocolate milk.
Three years ago, I held my newborn nephew, Ben, in my arms. I read to him his first book called Welcome To The World. I was overwhelmed with so much emotion that day. I wondered what type of person this little soul would become and how was I going to influence him? I was afraid that I may let him down. Self-doubt and worry crept up on me without warning. However, when I finished the book, I looked down at his soft, long thick blonde hair that stood up on ends and saw his fist wrapped around my finger. I knew then we were here to learn from one another.
Fast-forward to the present, and I watch him playing or I talk to him on the phone, and I am amazed at all the changes in him. He is no longer that wild-haired baby with a red face and chubby cheeks. He is a growing boy with whitish-blond hair, big blue eyes, and a sly smile across his face. This little “kiddo,” as he calls himself, has shown me more about how to live in the moment than anyone I have ever met. He laughs when the feeling overcomes him, sings crazy, made-up songs, and gets excited over gaggles of geese flying overhead. When upset and thinking about all the stresses in life, I am instantly pulled back to the present when he pulls out his harmonica from the toy box -playing and laughing in between songs as my dog howls in unison with him. Everything else melts away and we are together right then and there enjoying each other’s company. Nothing else matters.
A Heart As Big As The Sky.
Ben is never short on smiles, and he is definitely a “people” person. He talks to the refrigerator repairman, says hello to the grumpy guy in the grocery store, blows kisses to the old lady in the checkout line. He talks to kids and adults alike and tells them about his day and asks about theirs. He hugs friends that he just met. He gets and extra whistle-blow from the metro-train operator in St. Louis. He charms waitresses at restaurants -getting extra sides and toys with his meal. He is so charming that people gravitate towards him.
At the circus in July, we passed a clown. Ben smiled and said, “Hi.” The clown stopped what he was doing and gave Ben a sticker and shook his hand. Before long, other clowns gathered around, giving him stickers, and asking if they could have their picture taken with Ben. Other people walked towards us to see what was going on. It’s not that Ben manipulates people, it’s that he knows how to look you directly in the eye, smile, and make you feel special. He radiates love, joy, and kindness. That, I believe, is a gift you are born with, and Ben has it in spades.
The Will Of 50 Strong Men.
Woody and Buzz Lightyear, his heroes from the Toy Story movies, have nothing on this kid. One winter day, when he was about 14 months, Ben was just learning how to walk. He showed a stamina and determination unlike any other child I have known. Once he learned to pull himself up, he walked nonstop. When he fell down, he would crawl or walk back to his original starting place -no matter how far away- and start all over again. He did this hours upon hours, to the point he was grunting and sweating. No matter how much any of us tried to get him to slow down or take a break, he refused to stop until he had mastered the art of walking that day. He enjoyed it as well. He squealed in delight when he reached the ottoman, for example. Then, he would turn back around and walk and waddle down the hallway. There, he would reach the bedroom, touch the bed, squeal in delight, and start the process all over again.
Now that he is older, the focus and determination is set upon solving puzzles, learning flashcards, playing memory games, identifying letters and patterns, and building skyscrapers with his blocks. There is no stopping this kid.
An Epic Journey.
Recently, he was diagnosed with a rare blood disease: congenital amegakaryocytic thrombocytopenia – a disease preventing stem cells from producing enough platelets, which help us clot. He has been in and out of Children’s Hospital in St. Louis, Missouri, for about 2 years now. In January 2011, we learned that in order to treat his disease he needs a bone marrow transplant. Shaken to the core, we cried and wondered, “Why this kid? How will this kid handle the trauma to his body? How do we deal with all of our fears, worries, and ‘what ifs’? Can he survive this? Can we?”
I reflect back over the past 2 years, and realize he has faced countless blood draws, platelet transfusions, bone marrow draws, and 2 surgeries to remove his adenoids and tonsils. On top of that, he has had countless bumps and bruises that has left us on edge wondering if these normal toddler badges of courage will cause him to hemorrhage. Our hearts have been in our throats countless times as well. Through all of this, however, we have come to rely on Ben’s strength -mentally, physically, and emotionally. He is and will be our rock in the days ahead. His spirited attitude towards life has carried us through to this moment and made us grateful for the life in us and in front of us.
I look back at what I have learned from this child: to live life in the moment; to share your gifts with the world; to face life with passion and fierce determination – all valuable lessons when faced with life’s difficult moments. If anyone has a fighting chance to come out of this a stronger and healthier kid, it is Ben. He already has a resilient soul shining from his beautiful, blue eyes like a thousand suns across the universe. Our job is to join our love, support and positive energy with his to help him on this epic journey.
The Will of 50 Strong Men 