This post is the last in the series are the staff members at the Marriott Residence Inn. These few people I interviewed reflect what type of excellent treatment and kindness we received while helping Ben heal during those 3 months post-transplant. I feel honored that they shared their thoughts and opinions with me and I hope my written interviews do them justice. My family and I would also like to mention there are more people at this hotel that touched our lives like Aretha, Bridie, Amy, Alex, Jerry and Mike to name a few.Home away from home
The first thing you notice about Shelbie is her smile. She is always happy to see you. She greets the customers with a perky “hello” and answers their questions quickly and with laughter in her voice. When she has to deal with a problem, her answers are straight-forward and she replies, “No worries. It happens,” and then smoothes things over in a friendly manner.
The front desk at the Marriott is almost always busy. She has learned not to get flustered at all the demands and addresses each person and his or her needs equally. She is comfortable listening to her colleagues’ questions and requests and giving them directions or advice on what needs to be done to make the hotel run more smoothly. She stocks the little market area behind the front desk with drinks and snacks and never once acts like it is a task beneath her.
Ben had to wear his blue mask any time he was in public.When I asked Shelbie her thoughts on getting to know Ben, happiness bubbled up in her eyes and a smile came across her face. It is so evident that she has a special connection with her “buddy” or “little dude” as she calls him. She said not a day went by when she didn’t see Ben at the front desk or ride by on his tricycle. She would always stop what she was doing to speak directly to Ben. He would tell her about his day or what he had to eat for lunch or dinner. He would play hide and seek with her around the desk too (if it wasn’t busy in the lobby). What impressed her as well is that he never hesitated to talk about his condition. He would tell her about his doctor’s appointments or any procedures or treatments he was going through at the time. If for some reason she didn’t see him at the regular time, she would get worried. Anxious thoughts like “Where is he? Is he ill? Does he have an infection?” would swirl around her brain. She would breathe a sigh of relief when she saw him with his parents and grandparents later in the day. It became important to give Shelbie her weekly “Ben update” as she called it.
The first time she ever saw Ben was in the lobby. He was balding and wearing his blue mask. She later revealed that seeing him in this condition bothered her. Not only did she feel sorry for him, it upset her to see a child who looked sick. Her only contact before that time with sick children was through TV commercials like the ones for St. Jude’s. It was entirely a different experience to see a sick child in person. She said she didn’t know how to react or what to say to his parents when they walked by. However, all of that anxiety and insecurity melted away when Ben first talked to her. She learned quickly that he is a very outgoing and positive little kid. She began looking forward to seeing him every day and Ben and Shelbie immediately bonded. He became her little buddy and he always put a smile on her face. She said the first time he told her he loved her and blew her a kiss really made an impact on her. “No other boy has told me that he loves me, so this was super-special for me,” she said and then grinned as she continued to stock the shelves with snack chips.
Throughout the summer, she got great enjoyment from seeing him in the lobby and dancing his “Thriller” dance. She also paid close attention on how he interacted with his grandparents. She loved how he tried to act like he was the one in charge, and tried to be bossy, but saw how his grandparents weren’t “having any of that nonsense” and instead let him think he was in charge. He would say things like, “Grandpa, hurry up! Gees!” and then grandpa or grandma would give him “the look” which would cause him to get quiet and stand patiently while he waited for them to take him out of the lobby to go on their daily car ride together. Shelbie would also laugh whenever his grandparents teased him. He would get so embarrassed that he would put his hands over his face, shake his head, and sigh.
One of the highlights she remembered was when the doctor lifted some of his restrictions and he finally got to take a ride in the hotel shuttle. She said he was talking to everyone in the lobby that walked by and was saying, “I get to ride on the shuttle!” People would walk by and simply say, “That’s cool,” or “That sounds like fun,” and continue walking. Shelbie knew the significance behind this momentous trip: he was one step closer to going home. In fact, she recalls the bittersweet moment when he got to leave the hotel a week and a half earlier than planned. She was glad that he was getting ready to go back home to a more normal life. It was proof too what a fighter he was, but she was sad to know that he wouldn’t be a part of her daily life. Everyone in her circle, from her friends to her family members, knew about Ben and all his stories. She was so connected to him that she made the special effort to go and visit him at the hospital once when he was admitted overnight for observation. Letting him go wasn’t going to be easy for her.Shelbie visited her little buddy when he was in the hospital for observation.
The one thing this 21 year old has gained from her time with Ben is how much he has opened her eyes to the trials and tribulations of others. She believes she is not as naive as she once was. Watching him go through this journey to health, she feels smarter and more mature about how to act around people, especially children, who have life threatening illnesses. “I feel less sad and don’t feel as sorry for them anymore. Instead, I really respect what sick children are going through now. I can see that they’re being strong and working it all out,” she told me the day of our interview. She told me how there is now a 13 year old girl in the hotel who is also going through a bone marrow transplant. Shelbie felt confident talking to this girl and retelling Ben’s story of survival to her. Her first-hand account of Ben’s struggles, positive attitude, and fierce determination gave her the courage to tell this girl that there is hope, and that she must hang in there and stay strong even on the bad days because if a 3 year old like Ben (her little best friend) can do it, so can she. Upon reflection, Shelbie feels like the lucky one for having met Ben and learning this life lesson so she can “pay it forward” to others in need of being uplifted.
The next series of blog posts are about the staff members at the Marriott Residence Inn. These few people I interviewed reflect what type of excellent treatment and kindness we received while helping Ben heal during those 3 months post-transplant. I feel honored that they shared their thoughts and opinions with me and I hope my written interviews do them justice.
Stephanie is a quiet, reserved young woman in her early 30s. She has delicate features and is soft-spoken. She works with ease and a quiet confidence at the front desk. She is polite and answers the many phone calls efficiently and with gracious manners. Her milky-white, soft skin and dark hair set her apart from others, but her quiet ways lend an aura of blending in and observing others and her surroundings. Underneath this well-organized, composed exterior resides a very deep and spiritual woman who recognizes the importance of the small details in life. I immediately connected to Stephanie when I first started coming to the hotel. I appreciated her quiet ways and understood that along with her observations came a reflective personality that evaluated and equated others’ experiences with the bigger picture in life.
Upon interviewing Stephanie, she told me she remembers another front desk clerk telling her and Niketta that our family would be coming to stay and that we needed all the necessities of cleanliness and extra services in order to keep Ben safe. She related to me that there is blank in her memory of Ben and our family until after his 1 month stay in the hospital isolation room and his arrival at the hotel for his 3 month stay post-transplant. When she found out that another 3 year old would be going through a similar process that another little boy and his family went through a few years prior, she became anxious and upset. The reason? The little boy passed away 2 – 3 years ago and Stephanie was afraid for Ben and our family. She didn’t want to see any of us go through the turmoil like that family went through. Plus, she connected with that little boy and his family on such a deep level that she was scared to get too attached again and possibly have to go through a similar pain all over again.
When she started seeing Ben in his mask and riding his tricycle around the lobby area, she was impressed how smart he was, not to mention talkative, outgoing, friendly, inquisitive and caring. She was worried about him because he had no “stranger danger” and so she was always mindful of how she approached him and talked to him. She always watched out for him and paid attention to the people in the lobby because as she said, “You don’t always know what kind of people are in a public area.”
She said she could tell that he had bad days or wasn’t feeling well by the pout on his face or the way he stood. She would check in with Katy or my parents to see what was going on and their words would confirm what she could read in his nonverbal behavior. She mentioned that regardless of how he was looking or feeling he never failed to check in with her or the others at the front desk and say “Hi”. His resilience impressed her.
Shelbie (left) and Stephanie (right) visit Ben at Children’s Hospital during an extended stay due to stomach complications.One of her fondest memories was going to visit Ben at Children’s Hospital with Shelbie (her friend and another desk clerk at the hotel) while he was in there for an extended stay due to stomach pains that led to a colonoscopy procedure. That was the first time she had ever visited a little kid in the hospital, and she was hesitant at first because she wasn’t sure how she would handle it. However, Stephanie was amazed to see that he was still the same little kid with the big personality in the hospital as he was in the hotel. She was pleased to see the same friendly, talkative, lovable boy who, even though he was attached to tubes and in obvious pain and discomfort, was willing to joke, play games, and show off for his new friends. In return, Stephanie enjoyed laughing, taking pictures, and joking around with Ben.Shelbie & Stephanie spent a few hours cheering Ben up while he was in Children’s Hospital for observation and tests.
Stephanie told me that she realized right away he has a spark in him which is amazing to see in someone so little. “I would kill to have that spark in me at my age,” she told me. That spark, his attitude on how he dealt with one of the hardest things in his life, plus the family support he had throughout have inspired her. She became slightly emotional as she admitted she admires how he deals with hardships, something she can relate to more than I knew. In July of 2008, Stephanie’s mom passed away due to complications of MDS – a blood cancer. Her mother was supposed to have a bone marrow transplant, and doctors even found an overseas donor for her. Before the transplant, her mother was receiving platelet transfusions 2 – 3 times a week and even had to undergo a few blood transfusions. Unfortunately, her immune system was weakened from the disease and the treatments which caused her to contract an infection. And then, one fateful day, her mother was driving to Barnes-Jewish hospital to get another treatment when she became weak and dizzy. She lost control of the car and swerved into traffic. Someone called the police, an ambulance came, and she was rushed to the hospital. She was never to recover from the infection and she passed away before getting the transplant.
Stephanie has every reason to feel like she was dealt an unfair blow, but she feels that Ben’s story (and other kids who have survived life-threatening diseases and/or procedures) is an inspiration to her. She got the chance to see a little kid’s life change for the better and gets to watch him continue his amazing journey. Stephanie is committed to ensuring he has a happy life, and even made a 3 hour drive from St. Louis to Ben’s house a week ago just to see how he, Katy and Todd are all doing. She does miss her mother terribly, but she does realize Ben and other kids like him have families too and deserve to live their lives fully and with no regrets. And this is what she told me she wishes for Ben: a life of no regrets where he can choose a life and a career he’s passionate about and travel to interesting places, and most importantly to not let anyone control his destiny because he can handle anything that comes his way. Powerful words from a quiet, strong woman. I wonder if Stephanie realizes she has that spark inside her too and never has it shown brighter than when she helped guide us through these challenges this past year by all of her compassion, caring, and insight into what it means to be a good human being helping others on a difficult journey. Stephanie made a 3 hour drive to visit Ben and his family at his house. What a good soul she is!
For those of you who have been reading Ben’s story, and for those of you who just started, you will notice this blog and the ones that follow are told out of sequence. The reason for this is because I finally have the time and great opportunity to go back and recount in more detail Ben’s journey. If you are interested, the first blog entry begins with “The Kid” and gives more detail of Ben’s condition and the reason for his bone marrow transplant back in June 2011. You may also follow his story using the archive links in the right hand column. Thanks for reading and sharing in Ben’s amazing story and recovery.
Entrance to the Marriott Residence Inn
The Marriott Residence Hotel in St. Louis is situated on a busy intersection of Jefferson and Scott Avenue. Cars race by on the intersection and traffic pushes through the stoplights in hopes to reach a specific destination by a specific time. Life moves quickly on a daily basis. Even a lazy Sunday sees the occasional spurts of traffic rushing to some sporting event or festival in the city.
The parking lot in the Marriott is filled with SUVs, cars, and trucks that carry the tired businessman to and from his meetings or the tired family who are stopping over night from a long vacation. Other cars are filled with groceries for the family of three who recently survived a traumatic house fire or divorce and are temporarily living at the hotel. Many people from many countries find their way to this hotel for various reasons. It was no bother for the staff to welcome our family there and do their best to accommodate our unique situation. So, day after day, month after month, for 3 months to be exact, my parents’ red Dodge Caravan was parked in the back on a daily basis. The front passenger’s side was usually filled with a crochet bag, 2 Diet Sprite bottles, snacks and Clorox wipes. In the back, along with a toddler’s car seat, Clorox wipes and hand sanitizer sat side by side next to Ziploc bags filled with small children’s toys. This van transported Ben on a daily basis as he lived in relative isolation with his grandparents (my parents) 5 days a week, and then with his parents every weekend. To go through a bone marrow transplant requires a lot of special care, but to add the heartache of being away from his parents daily due to their unwavering work schedules, must have been traumatic for Ben. However, his grandparents set up an amazing routine that helped keep a sense of safety, security, love and normalcy in his life. The hotel staff pulled their weight as well and made Ben feel like a part of daily life there.
Room 801. I can still picture his head, with ears sticking out from both sides, peering down at me from the room window every time I came to visit, which was usually on a daily basis, and then 2-3 days a week when I started back teaching during the fall semester. Every one of us (his parents, his grandparents, and I) did a ritualistic “booty shaking” dance and enthusiastic wave from the parking lot before we entered the hotel. It made him giggle and we all looked for his happy wave and a “thumb’s up” or other small sign that he noticed us. Room 801 windows are the top 4 in this image.
When our family first got situated at the hotel, Ben would always look out the windows and observe the comings and goings in the parking lot, his link to the outside world that closed in on him for 3 months. He loved looking at the church steeple in the distance and got excited every time a metro train or Amtrak train went by on the tracks nearby. He was always the first that could hear and then spot a helicopter or airplane. We would all rush over and “ooh” and “ahh” over his little discoveries. One day, he spotted a one-legged man in his late 50s or early 60s. Ben was transfixed on how mobile this man was on his crutches. The man slung his suitcase around as he simultaneously closed the car door. Then, he bent over, picked it up, and carried it inside as he rocked back and forth like a pendulum on his crutches. He looked for him daily and would always say, “Look! There’s our one-legged man.” Then he would wave and say “Hey!” to no avail. Like young Jim Hawkins in Treasure Island, we began to think of him as our personal Long John Silver.
As everyone fell into a routine, we discovered the best (and least busiest) times of day to go down to the lobby and let him ride his tricycle or mini-motorcycle. He also went to go visit his “girlfriends,” who were the women at the front desk, Shelbie, Niketta, and Stephanie being three of his favorites. He rode his motorcycle on the carpeted and tiled areas in the lobby. He loved looking through the glass door at the swimming pool and watching the kids swim and have fun. He never really complained that he couldn’t be with them, and he sat attentively on his motorcycle and diligently wore his blue mask. When he was finished watching, he would peddle his motorcycle in reverse and turn and race down the hallway to another part of the lobby. When the dining area was not in use, he even rode circles in there, and we pretended to have very important meetings in the board conference rooms as well.
We just had to be very diligent about sanitation and he had to wear his mask because he had a defunct immune system ever since the transplant. One day in the lobby, Jerry (one of the maintenance men) kindly asked a little girl how her chicken pox were coming along. He was very polite to the little girl, but it was a warning to my parents who had just brought Ben down to the lobby. Dad picked Ben up and took him back to the room. If he would have contracted chicken pox, he could have become seriously ill or have died. The hotel staff always looked after Ben and his health and safety. He wasn’t completely isolated from human interaction, however. He did get to sit inside a fire engine that was outside the hotel one day performing a routine check. The firemen were so impressed by his resilience and touched by his story that they told us they noticed instantly he was a strong-willed boy who was definitely a fighter. They laughed and sat in amazement as he visited with them through his blue “jet fighter pilot” mask. Ben even asked for Germ-X (for good measure) after accidentally touching the steering wheel. He was always diligent when it came to protecting himself. He finally convinced us to allow him to push elevator buttons as long as we smeared on the Germ-X afterwards. He also learned how to maneuver around his new world with his backpack that carried his “tubies” and I.V. that pumped his daily dosage of Tacro (his autoimmune suppressant drug).
The hotel became our family’s world. He lived with his mom (my sister Katy) and his grandparents (our parents) every day. When Katy finally had to return to work, our parents stayed with him throughout the week and then like clockwork Katy and her husband Todd were there every single weekend. I came every single day on my summer break, and then when I returned to teach high school in the fall, I came 2 – 3 evenings a week so as to give my parents and Ben a few hours break. The hotel was a microcosm of society, a fishbowl where we could look into or out from every day. It restricted us and contained us on one hand, and protected us and nurtured us on the other. It was our security blanket. Our island. Our home away from home. The staff members there became our family and worked equally as hard to keep Ben safe so he could heal. Everyone had a role to play, and they played it well.
Ben visited with Aretha every day when she came in to clean the hotel suite. She was so kind to all of us, and she kept Ben in check too and reminded him to listen to his parents and grandparents, and admonished him if he acted out by throwing a pillow or his blanket on the floor out of spite. She understood how crucial it was to keep him as free of germs as possible. We were so grateful that she took on this extra mothering role with him, especially when we learned she has 11 children of her own. She also took extra pains to clean the rooms in the suites and provide extra towels and linens for Ben’s room since we had to use separate towels, wash cloths and pillows so as not to cross contaminate. After our daily visit with Aretha, we got out of her way and took him on a daily car ride. [There will be another blog later about our epic car rides.]
After returning from the daily car ride, he would say “hello” to his girls at the front desk. Sometimes he would act shy and simply wave. Other times he would sneak up to the front desk and stand on his tiptoes and peer up at them from his big, blue mask that made his eyes even bigger and bluer. As time went on, he would show off and do a few of his Michael Jackson “Thriller” dance moves in the lobby (especially if Shelbie egged him on). He definitely did not have “stranger danger”. He was conscientious of not getting himself dirty, not taking off his mask, and not getting around big crowds of people. Yet, he always made an effort to push elevator buttons for guests and ask them what floor they lived on. He would talk to Jerry or Mike (some of the maintenance men at the hotel) and he would share his daily experiences with guests his grandma had befriended.
When the evening rolled around, it was not only time for dinner but time for his daily Tacro / I.V. change. He became somewhat an expert on the procedure and he even bossed mom, dad and Katy around if they didn’t do the I.V. change in the specific order or to his liking. Grumblings and fights would ensue on occasion, but we adults (who always won the fights) never once tried to break his fighting spirit. “Pause. Off. Clamp. Change the batteries. Check the line. System is Ok. Batteries full,” became his evening mantra every time the I.V. was changed and his “tubies” to his Broviach tube were cleaned. Even though we all got used to the fact that the I.V. had to be changed nightly (Katy and mom handling the medicine dosage, syringes, and I.V. tubing, Dad handling the machine, and batteries) it never became a stress-free procedure. Too much Tacro could cause him to have a seizure. Not enough Tacro could allow for Graft vs. Host Disease or worse, bone marrow rejection. If tiny air bubbles got through the I.V. line, they could get in his blood system and kill him. We were always impressed how in tune he was to this procedure (hence his mantra that was derived from astute observations). We were even more aware how hard he was fighting to stay alive, so we honored his fight by being extremely diligent every single day in every single action we did with him. Carelessness had no room in our hotel.
That’s why this special routine in this special residence hotel meant so much to all of us. From his daily I.V. and medicine regimen, the daily cleanse of the hotel room with Clorox wipes, the visits to the lobby, to the car rides, creative games and stories (and countless episodes of “Caillou”), we tried to maintain a world of love, optimism and normalcy in this otherwise bizarre and scary situation. We tried as best as we could to ensure that he never felt overly scared or terribly lonely. And any time any of us left the hotel, we would search for his little head in the window of Room 801, and then we would wave and do our dance routine until we made sure he saw us and waved back.
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.
The Will of 50 Strong Men 