TEAM Mom's Perspective on Pediatric Cancer

September is Pediatric Cancer Awareness Month. In the United States in 2016, an estimated 10,380 new cases of cancer will be diagnosed among children from birth to 14 years, and about 1,250 children are expected to die from the disease. Although pediatric cancer death rates have declined by nearly 70 percent over the past four decades, cancer remains the leading cause of death from disease among children. This week, TEAM parent, Megan Rutledge, shares her son Drake’s story.  

Megan:  Drake was diagnosed with leukemia at age 3 on June 20, 2014. This diagnosis came only 17 days after he was diagnosed with autism. He had been sick for a month, if not a little longer. It was nothing too alarming; he just didn’t feel well. We took him to his pediatrician numerous times, as well as the ER. Nobody saw anything other than normal sick kid stuff. He had an ear infection or a cough, nothing major. The developmental doctor who diagnosed him earlier in June had requested that labs be taken to test for any vitamin deficiencies. The order was sent, and we were told we could do it at any time. June 20, Aaron and I were both off of work. We were tempted to go to Silver Dollar City that day but instead decided to go ahead and have the lab work done and then spend the day at grandma’s pool. Within an hour or so of leaving the Schmeiding Center and having blood drawn, I received a call from our pediatrician’s office. I was told that the blood work had come back already and that Drake needed to be seen at Arkansas Children’s Hospital due to some concern with a POSSIBLE cancerous infection. Being that it was a Friday afternoon and not knowing that he was sick, I naively asked if that meant early next week or what? She told me that no, he needs to go NOW and as long as he was stable, he could be transported by car, and that we needed to pack for several days. Stable? He was about to jump into the pool… Of course he was stable. I’m sure a lot more was said during that conversation, but I could not for the life of me tell you what it was. I blanked out and only heard bits and pieces of it. We got packed and met Aaron’s parents to drop our youngest off with them. We headed straight to the ER with grandma, grandpa, and brother following shortly after.

The ER was waiting on us. We waited in the waiting room MAYBE 3 minutes. More blood work was done, and we were eventually given the leukemia diagnosis late that night. We were moved to the pediatric intensive care unit for the first night. Drake’s blood counts were so low that they were surprised he was still able to function normally. The first several nights were very rough for everyone, but especially Drake. He had spiked temps of 104+ and was having allergic reactions to the medications. Type testing and plans were not made until Monday morning when we learned that given our situation, Drake had the best type of leukemia to have. He was diagnosed with Acute Lymphoblastic Leukemia, type B. While in the hospital, he had a surgery to place his Port-A-Cath, and it was discussed that after he was well enough, he would have surgery to place a G-Button (he refused to take ANY medication by mouth). We were finally released 7 days post-diagnosis.

Drake’s treatment plan is a total of 10 years. The first 6 months was very intensive, but now that he’s on maintenance, it is much better. He is seen once a month in Little Rock and has blood draws every week at Highlands in Rogers. August 2017 will be his last dose of chemo, and then he will been seen once a year until the 10 years.

What a powerful story. Can you tell me what friends and family did that was helpful for you during that time? 
Megan:  We had an absolute outpour of help from not only our friends and family, but from the community as well. Before Drake was even released from his initial hospital stay, there had been fundraisers set up, our house had been cleaned, and we had numerous offers to mow our yard. Mowing the yard was something that a ton of people offered to help with. We, at the time, did not need it done, but it was definitely something that you don’t think about having to do.  

Aaron and I were both off of work for several weeks after Drake came home, just to make sure that we were all accustomed to our new normal. A meal train was set up where friends and family signed up to bring us a meal everyday for a certain number of days. That was incredibly helpful.  

The biggest blessing for us though, was working for a department (we both work for the sheriff’s office) that was so understanding and willing to help. We did not have to worry about anything work-related. We are so appreciative of our work family and the sacrifices they have made in order to help us.  

Money, of course is going to be one of the largest burdens on someone going through a situation like ours. The hospital is amazing at helping, and every child is automatically matched with a social worker to help during hardships (gas money, paying bills, etc.). For the first 6 months of Drake’s treatment, he was seen once a week at Arkansas Children’s Hospital in Little Rock. Because his appointments were very early in the morning, we stayed in a hotel every Wednesday night and had clinic on Thursday. Without the help of others, we would not have made it. Even though Drake was not staying in the hospital, our friends and family realized that it was still very expensive making that trip every week.  

Was there anything people did that was NOT helpful?  
Megan:  In the very beginning… it was talking about it. We knew that people would have questions, but we didn’t even know the extent of what our new life was going to be like.

Another thing was visitors… Drake could not be around visitors for quite some time. His counts were too low to go into public or be around a lot of people. During the first several months home, he didn’t leave other than going to the hospital and the only people that came into our house were family members and therapists who had already received their flu shots.    

What tips you would give to other families dealing with pediatric cancer, on how to manage doctors appointments, side effects, other illnesses, school, friends, siblings, etc.?
Megan:  Just like every other stressful situation, you are your child’s advocate. If you don’t understand or like something, be their voice. The side effects of chemo SUCK. There is no way around that. There is nothing to prepare a parent for the sleepless nights, the constant vomiting, or the change in appearance. I personally did not want to see Drake’s hair fall out, so we chose to cut it as soon as he came home from the hospital. School is a whole new bag of worms now. There are restrictions and special forms and meetings that have to be had.  

How is Drake doing now?  
Megan:  He is doing AWESOME. He has doubled in weight since being diagnosed and truly looks like a normal, healthy boy. Looking at Drake, you would not know that he has leukemia. When we were going over his treatment plan during his initial hospitalization, they told us that they have NEVER seen a child NOT be admitted at some point during treatment. That was true for us. Drake was admitted in December 2015 for about 4 days. He developed cellulitis and his counts bottomed out. Once they got his counts back up, he was good to go. We have not (knock on wood) had any ER trips or hospitalizations since then. He started Kindergarten in August and is doing great.

A couple of months ago, Drake was having HORRIBLE issues with PICA. He was putting any and everything into his mouth. We talked to his OT. She hadn’t had much experience with it, but it didn’t stop her from helping. She talked to any and everyone that she could and suggested a handful of different things. I believe that she had even talked to you about it, Melissa! We did end up having his iron levels checked (big ordeal with what the chemo does to his levels and having to do additional tests), and we also had him seen by a behavioral doctor. With the help of his OT, other therapists, his pediatrician, and his oncology team, we have not had any issues with PICA in quite some time. It just goes to show that his therapists don’t stop caring once his treatment hour is up.  

It definitely hasn’t been JUST cancer with us or JUST the need for therapies. Therapy has helped Drake during our issues with cancer. 

Guest Writer Cassie Nolan: Kinesio Tape Advantage

The Paralympic Games are underway in Rio in September. And like the Olympic Games, we again see a lot of brightly colored tape on the skin of world-class athletes. I was recently asked about the purpose of this tape. In the health profession we call this “super stretchy tape constructed of cotton and elastic fibers” by a simpler name: Kinesio Tape. It has applications not only in the world of sports medicine but also in my own world of pediatric therapy.

Athletes use Kinesio Tape for multiple reasons such as stabilizing a frequently used shoulder. The same taping application can be used for a child with Down Syndrome who has low muscle tone and needs extra input to stabilize her shoulder while she crawls or plays with toys. Kinesio Tape can also relieve pain by promoting the draining of fluid from an injured area.

The “magic” of Kinesio Tape stems from how it is applied. I heavily rely on my training in anatomy, physiology and the musculoskeletal system every time I use Kinesio Tape. For example, where I first apply the Kinesio Tape to the skin and the direction I stretch the tape really matters. One direction will facilitate movement while the opposite direction inhibits movement. This has many wonderful applications in pediatric therapy such as helping a child develop better posture control or addressing pain in joints and tendons.

After I incorporated Kinesio Tape as a component of my treatment plan for 11-year-old Steven to address toe walking, I laughed when he asked me to also put tape on his arm to help his basketball shot. Steven loves sports! When kids know that part of their therapy also helps world-class athletes, they can’t help but feel stronger and more courageous.

As a therapist, I strive to provide the best, most effective treatment for kids to have success meeting their therapy goals. However, an even greater goal is to help kids build the strength and courage to win “gold medals” in their most important contests…THEIR LIVES!

Cassie Nolan (pictured right serving in Guatemala with TEAMworks) holds a Master’s Degree in Occupational Therapy from the University of Central Arkansas. She was initially introduced to Kinesio Tape applications during her field work at Children’s Therapy TEAM as a graduate student under the supervision of Occupational Therapist Julie Marvin. After becoming a licensed therapist, she honed in on her Kinesio Tape skills through training with Pam Samaniego, a certified Kinesio Tape instructor and physical therapist. In her work with children with special needs, she holds strong to her favorite quote by Olympian Scott Hamilton, “The only disability in life is a bad attitude.” 

Guest Writer Amanda Wherry: I have Something to Learn from You

When I first started my job in Central Asia, it wasn’t because I was proficient in the language. In fact, my language was pretty terrible. (I had just barely completed one semester of language study.) It wasn’t because I was a renowned expert. (I had worked in the States as an occupational therapist for just over two years before moving – certainly not enough time to feel completely confident and competent in my profession.) And it wasn’t because I was itching to dive into the insanity of paperwork required to get a work visa in the country where I lived. I don’t think anyone is crazy enough to actually enjoy filling out that many forms and finding that many government offices! Rather, I started working because there was a massive earthquake in the area – an earthquake that flattened an entire village. The city where I lived was inundated with earthquake victims – victims that needed surgeries and rehab and… occupational therapy. For weeks after this earthquake, most nights were filled with the sound of ambulances screaming their way through the chaotic 45-minute drive from the airport to the hospital.

Shortly after the earthquake, while news reports continued to focus on victims who were still being found under mounds of rubble, and either tragic or miraculous stories consumed household dinner table conversations across the country, an employee at one of the local hospitals sent out a rather peculiar email. He wrote it solely to the expat community, specifically asking if there was an OT who would be willing to volunteer their time at the hospital to treat the earthquake victims and also train the local people how to do OT/PT. Since I was the only person who met that description, it seemed pretty clear that this was a setup from God. I’m a “doer” by nature. And I had started to grow a little restless, not having an outlet to work and truly dig in deep with the community. Language learning is obviously a necessary part of moving overseas, but unlike some expats, simply learning a language to learn a language did not fuel my soul. I love people. So I learned the language because my options were to either: 1) learn the language proficiently enough to make local friends; or 2) have no friends and therefore be forced to talk to walls. Crazy people talk to walls, so I chose option one and studied hard.

But I needed an outlet for my “doer-ness.” Although it seemed completely intimidating and moderately terrifying to begin working as a medical professional with medically critical cases while having only beginner level language skills, I started volunteering one morning a week. This wasn’t a huge chunk of time, but it was all I could manage while still being a full-time language student. Within a year, I went on staff full-time at the hospital, but it was that first year of volunteering that really helped me gain so many cultural experiences, greatly shaping how I would later serve that population as a therapist.

As I’ve mentioned, my language was my greatest barrier when I first started volunteering. Learning one of the hardest languages in the world for native English speakers was no small feat for me. And so, at the beginning, I obviously was a “student” at the hospital just as much as a “teacher.” I needed my local staff to teach me medical terminology, and they needed me to teach them therapy techniques. But what was just as important, if not even more important, was that I needed them to teach me the ways of their culture.

Cultural differences can make or break a relationship, and I’ve seen it “make” AND “break” many a friendship or marriage. Cultural differences can make your skin crawl. I will never enjoy walking into a store and have an employee non-stop holler the daily specials at me, using a poor quality microphone and crackly loudspeaker. I honestly think I have hearing damage because of my years overseas. Or I’ll never understand why the hospital did not have a rule that employees and patients could not smoke in the hallways, the stairwells, and in their rooms – especially while hooked up to oxygen. (In fact, I became a little bit famous for chasing people down and forcing them to put out their cigarettes. I constantly used the line, “If you blow up and kill me in the process, my mother will cry. And you do not want to make my mama cry!”) There were so many cultural differences and interesting experiences bombarding me on a daily basis.

Here are just a few examples:

• Once, while at work, I saw a hospital patient peeling a tomato with her teeth and placing the skins like a patchwork quilt all over her face. My coworkers thought it was maybe good for her skin.
• Every spring, workers would paint the tree trunks of every tree in the city white with a colored ring at the top. I asked dozens of people why paint the trees, but no two answers were the same.
• The hospital did not have air conditioning, and so there would be several weeks during the summer when the clothes under my white coat would be soaked through with sweat. But my staff refused to open a window while having the therapy room doors open at the same time because they claimed that the refreshing cross breeze would cause paralysis over half of their face.
• Women who had just given birth couldn’t brush their teeth, couldn’t take a shower, and couldn’t wash their hair… for weeks.

Cultural differences. Not necessarily wrong. Just different. (And sometimes completely scientifically incorrect… but fascinating nonetheless.)

In order to gain more and more understanding of the local culture, I became a constant question-asker. I took on the mindset of, “I have something to learn from you” – with the “you” being absolutely anyone in front of me. This meant laying down any sort of thoughts or opinions that I was the “foreign medical expert” or that I “knew better.” This sort of learner mindset was regularly challenged, however, and there were several incidences where I fumbled to know how to encourage my staff to perform evidence-based practice methods and to think outside of their culturally created box, while at the same time honoring the fact that I was living in their culture.

One such incident was when we received a patient with ALS – Lou Gehrig’s disease. He had technically been diagnosed approximately eight months before at a much larger hospital, in a much more technologically advanced city, but no one had told him his diagnosis. Not the doctors. Not his family members. No one. This was the way it was done in this culture. If the patient had a negative diagnosis or prognosis, they simply were never told. I worked with patients who didn’t know they had cancer but were taking “preventive chemo.” (There obviously is no such thing as “preventive chemo.” No one would put him or herself through chemo unless they actually had cancer. But this person did not know this.) I also worked with patients who had Parkinson’s disease, multiple sclerosis, and muscular dystrophy, but had never been told by their family and therefore had become depressed because they couldn’t understand why their symptoms kept getting worse and worse.

That was the case for this man with ALS. He was a successful businessman who had worked hard his whole life and had retired less than one month before beginning to show signs of ALS. He had spent a vast amount of his savings to see doctor after doctor, specialist after specialist, and try drug after drug. I’m assuming that each new place saw a copy of his medical files and knew his diagnosis, and yet no one told him that he was never going to recover the use of his legs. No one told him that, in fact, he would eventually die from this disease. Initially, my staff at the hospital began with this same cultural approach. He had come to our department because he had heard that a foreigner was working there and that physical therapy would be beneficial for him. When my staff told me his story, I was alarmed. In my opinion, this man needed to know that he was dying. He needed to be honored with the time he had remaining to put his affairs in order and say his goodbyes. His disease was moving swiftly, and within the short time frame that I saw him, he lost the use of his arms. But, my staff was afraid. They were afraid of breaking the cultural taboo and telling this man the truth of his diagnosis. I could have done it. I could have walked right up to him and announced, “You are dying. Stop wasting your money looking for different treatment or a cure and take care of your business.” But, that would have destroyed my relationship with my staff, and it would have lost their trust for forever. What I did, instead, was have a private meeting with my staff and ask that we brainstorm a solution together. I told them that I wanted to learn from them, learn about how to honor their cultural norms, while at the same time honoring the man in front of us. I asked them, if they were sick with this disease, would they want to know if they only had a short time to live? They all emphatically said yes, that they would want to take advantage of each and every day. By telling them that I both wanted and needed to be a learner within their culture, and by not attempting to “prove” to them that the way my culture would handle the situation was a better way, my staff was willing to brainstorm options with me. They eventually worked out the situation in a way that I never could have imagined. Another patient at the hospital was an old classmate of this man with ALS. In this culture, classmates bond together as close as family members. So, we told this man’s classmate, and he told the man about his diagnosis and prognosis. (Somehow, this wasn’t breaking any cultural taboos.) The man promptly left therapy and went to visit his children who lived on the other side of the country. I never saw him again.

“I have something to learn from you.” It’s such a valuable attitude. As a therapist I have something to learn from every single child that I see. From every parent. From every co-worker. As a daughter and a sibling, I have something to learn from my mom and dad or my sister, every time I see them. As a human, I have something to learn from the toothless lady who bagged my groceries last week, from that person in line in front of me at the bank, or from that girl who hoots and hollers and makes classes at the gym so much more fun. I can’t afford to not engage these strangers, because I have something to learn from them. I would be remiss to not meet my neighbors, because I have something to learn from them. By taking on the attitude of, “I have something to learn from you,” we not only honor that individual, but we remove the nagging need inside of us to try and “be seen” or “be noticed” or “be in control.” By believing that I have something to learn from every person around me, I can no longer excuse hiding out, remaining “safe,” or staying comfortable. If I say that I want to learn, and if I believe that you have something to teach me, then I must engage. And, I must engage with honor and humility.

Honor. My staff was trying to honor the man with ALS in the best way they knew how – according to their custom. But that custom was based on a lot of never-challenged fears. Honor is driving, motivating, intoxicating even (so is fear). And dishonor is one of the biggest wrecking balls out there. When I honor someone by approaching our conversation, our every interaction with the honest belief that, “I have something to learn from you,” it engages and disarms the other person. The weapons of differences in ideas and personalities are laid down, and the white flag of togetherness gets waved. But the killer of that white flag is the battle cry of trying to prove oneself or gain approval from anyone other than the Lord.

When I approach anyone, at any time, in an effort to prove myself, I have effectively taken my eyes off of honoring them and certainly have back-burnered any desire to learn from them. Rather, my focus is now on me. Fueled by insecurities, brokenness, comparison, or previous hurt or offense, I want to take control of the situation, take control of the person, or force them to take back what had been said. Control and dishonor is trying to prove my knowledge, my ability, my prowess, my street smarts, my worthiness, or my willingness. When I step into a conversation trying to prove, I don’t want to learn from, but rather I want to be learned from. I want to be the center. I want to be the focus. And I want to exalt myself and exert myself over the other person. Out of my own insecurities or because I have taken my gaze off of Jesus and forgotten, even for the briefest of moments, that He gives me identity (not what I do or what I know), I want the other person to feel small in their knowledge. If I’ve just taken a hit or I feel like my skills or abilities have been questioned, then, consciously or subconsciously, I start to want to prove my worth. I begin to seek approval from man instead of from Jesus. But trying to prove myself will only leave me worn out, frustrated, offended… or having worn out and hurt the other person.

What eases the tension of a conversation that has gotten a little heated? Believing that you have something to learn from that other person.

What creates an atmosphere of togetherness and team? Believing that you have something to learn from that other person.

What bonds together spouses and parents and children? Believing that you have something to learn from that other person (even if that other person is your child).

What engages communities and creates connectedness? What adds health to relationships? And what encourages honor and humility? Believing that you have something to learn from that other person.

I have something to learn from you. Therefore, I am thankful for you. I need you. If I will lay aside my pride and insecurities, then I can allow you to make me better, stronger, and wiser.

I have something to learn from you.

Amanda Wherry serves as Children’s Therapy TEAM’s Faith-Based Program Coordinator. She is a local and international advocate for individuals with disabilities and their families. She spent nearly 7 years in a remote area in central Asia developing a hospital pediatric therapy program with teaching in physical, occupational and speech therapy as well as NICU therapy. read more

Leks Clark: My Service Dog Megan

Everyone loves a good story about a boy who loves his dog, right? So, today I share an interview with a 15 year old young man, named Leks, who has a service dog named Megan. Megan is truly a working dog. She not only works with Leks, but she also works here at Children’s Therapy TEAM during the day with the clients at the clinic. Last week, I interviewed Lek’s mom, Amanda Clark, as part of our three part series on service animals and now it’s Lek’s turn to share.

So, on to the sweet story…

Melissa:  How long have you had Megan?
Leks:  I have had her around 3 or 4 years. 

Melissa:  Tell me how you got Megan.
Leks:  We rode on a plane to California to attend 2 weeks worth of training [at the Canine Companions for Independence Training Center]. Before we even got there, the puppy raiser, Chris, had already taught Megan many commands. The first thing I did with Megan [when matched with her on day 3 or 4 of the training] was work on bonding. I laid on the bed the first night and cuddled with her. I loved knowing that this was my dog to take home. I was ready for this change. I was so happy. I told her that I was ready to take her home. Then we worked with Sarah and Seamus (the dog trainers). They taught me and Mom and Dad how to work with Megan. There were several other families there at the same time, learning to work with their new dogs, too.

Melissa:  What jobs does Megan do for you?
Leks:  She can pick up stuff that is dropped, opens doors by grabbing the door handles with her mouth, and open the pantry door. She has a command to close doors too.  

Melissa:  Does Megan go into public places with you?
Leks:  Yes. She likes to go to my grandma’s house, the clinic, and she goes to doctor’s appointments with me in Kansas.

Melissa:  Who helps you take care of Megan?
Leks:  I can’t have Megan by myself until I am 18 years old. So she has to stay with my Mom and Dad and me for now.  

Melissa:  Does she have to work all of the time, or does she have play time, too?
Leks:  She has both work and play time.

Melissa:  What do you like  to do with Megan during her play time?
Leks:  We take her to the dog park and play with her. I like to sit on the couch or lay on the bed with her. I like to love on her.

Leks and Megan are truly a great pair! I have many families ask me for more information on service dogs, comfort companions, and how to obtain service animals for their own children. If you are interested in obtaining a service animal or comfort companion (the two ARE different) for your family, please find more information in my resource list.

As a reminder:

• Service animal – provides a particular action/service for an individual with a disability and is protected by the Americans with Disabilities Act (ADA)
• Comfort companion – provides comfort and support (rather than a particular action) and is NOT covered by the ADA

Resource List (accessed in July 2016)
Canine Companions for Independence, the agency Lek’s family went through to pair Leks with Megan
Amanda Clark: My Family’s Journey with a Service Dog, Service Animal Blog Series Part 2, Children’s Therapy TEAM Blog, August 2016
Animal Assistance and Therapy, Children’s Therapy TEAM Resource Library
United States Department of Justice Civil Rights Division, Americans with Disabilities Act
Service Animals and The Americans with Disabilities Act, Service Animal Blog Series Part 1, Children’s Therapy TEAM Blog, August 2016
Service Animals and Emotional Support Animals, ADA National Network
Frequently Asked Questions about Service Animals and the ADA, U.S. Department of Justice, Civil Rights Division, Disability Rights Section

About the Author:
Melissa Foster is the leading contributor to Children’s Therapy TEAM’s Weekly Blog. She is a Pediatric Occupational Therapist with over a decade of experience in the field. An active public advocate in the NWA community, Melissa addresses topics related to Autism, Sensory Processing Disorder and general health and child development.