The First Puzzle Piece

Have you ever looked back at the puzzle pieces of your life and thought to yourself, there’s my first puzzle piece, the puzzle piece that was the beginning of my story? This was the thought I had a couple of weeks ago— But not the puzzle piece I received at birth, the first puzzle piece that began my medical journey.

         From infancy to five years old, I suffered from chronic respiratory infections and I was a severe asthmatic.  My pediatrician thought this was strange, but thought my immune system was building itself up and as time went on, I would grow out of these infections and asthma.

         This was not meant to be.

         One morning when I was six years old, I woke up with excruciating pain in my knees.  They were hot to touch and I couldn’t stand on them.  Eventually later in the day, I was able to walk with a limp.  The next evening, my parents realized my condition was serious when I spiked a fever of 105.  They took me to my pediatrician and she diagnosed me with septic arthritis.  She told my parents it was imperative that I be taken to Children’s Hospital.  When arriving at Cincinnati Children’s, the first department I saw was orthopedics, who determined I needed to be referred to Rheumatology.  I was taken back to a room to be seen by this new doctor, a tall man with a white coat and black shiny hair slicked back.  He looked at my parents and said, “I’m not supposed to be here today.  I was supposed to be at a Rheumatology conference.”

         My mom looked at him and said, “Oh yes you are supposed to be here.  This visit was ordained by God.”

         Immediately in that moment, I clicked with this doctor. The cherry on top was his amazing nurse practitioner who I instantly took to as well— no one could calm my nerves before a blood draw or an IV stick like she could. On day one, he coined me with the nickname, “WW Square.” With each visit, he would put on the exam table and look over at my mom and say, “Mom, you just sit over there and be quiet, “WW,” and I need to chat for a minute.”

This specialist and his nurse had a special calling on their lives because where most children dreaded going to the doctor, I didn’t because I was going to see my buddies.

         Through many visits, procedures, and tests with my rheumatologist, it became apparent that my rheumatological issues were secondary to my immunological and hematological issues.  So many of my blood counts were out of range, therefore, I was constantly weak and lacking stamina.  Another major clue was my enlarged spleen.  It came out from my rib cage, down to my hip bone, extending over to my belly button. 

         The problem was there was no hematologist or immunologist that would keep me as their patient.   These specialists had no clue what was causing my immune disorder and they didn’t want to responsibility or liability of caring for someone they didn’t know how to treat.

         This didn’t stop my rheumatologist though.  He took the bull by the horns and managed my care despite the fact that rheumatologically my symptoms were well controlled and not that much of issue.  He had round table after round table discussions with medical experts in different fields to try to get to the bottom of what was causing my illness.  His white board was covered with possibilities and hypothesizes of what could be the culprit to my weakened immune system. His constant digging and trying new treatments kept my immune system from completely crashing. He never gave up on me and truly cared about my well-being. 

         So much so when it was time to let me go as a patient he did.

         When I was 11, the doors opened for me to be seen by immunology and hematology at Duke University.  My immunologist and hematologist at Duke stressed the urgency of my having a hematologist and immunologist to manage my case and I needed to consider transferring my care from Cincinnati Children’s to Nationwide Children’s.  As a child, I was devastated.  I didn’t like this decision at all, because I would be leaving a doctor and nurse I loved dearly, two people who made me feel so comfortable, I sometimes completely forgot I had a disease.

         But my rheumatologist saw what I couldn’t see as a child and that was the bigger picture.  While he didn’t want to lose me as a patient, he knew this would be the best move for my well-being.  I began seeing an amazing hematologist at Nationwide Children’s and a few years later, I began seeing an immunologist, who ironically came from Duke University to Nationwide Children’s. 

My immunologist is the specialist who sent my case to the National Institutes of Health, (NIH).  My head doctor at the NIH told me that despite my medical team, not being in one area or hospital and virtually having no clue what they were dealing with, all of them amazingly did everything correctly in treating me.

         A few weeks ago, I had the exciting opportunity to tag along with my friends who are seen at Cincinnati Children’s, to see my former Rheumatology nurse.  I haven’t seen or talked to her in 15 years and I haven’t been treated by her in 20 years. My rheumatologist no longer practices there, but I got to share with my nurse about my journey and the miracles I have witnessed.  After I finished sharing, she looked at me and asked if I would like for her to try to get my rheumatologist on the phone so I could talk to him.

For 10 minutes, I was able to talk to him and share with him the exciting things I’ve gotten to do and experience.  I thanked them both for their excellent care of me and what my NIH doctor told me about the excellent care I had received and that they both were included in this.

         It was then I realized and understood that my rheumatologist and his nurse were my first medical puzzle piece— they were the puzzle piece that began my story as I have walked with MAGIS Syndrome. God used them when my disease was first exposed to keep me safe and alive until I could find the right specialists who would take my case.

 I thank God He revealed this to me. I thank Him for allowing me to see the bigger picture, and above all I thank Him for my first medical puzzle piece.

        

Real Everyday Super Heroes: The Real Marvels

         One thing that may surprise you about me is I love Marvel Movies.  X-men, Spiderman, Fantastic 4, you name it, I’ll watch it.  The characters in these movies become the heroes and idols of little boys and girls all over the world. When we become adults though, we realize the actual Marvels are the real, everyday people God has put in our path to touch our lives. 

Over the years, my doctors and nurses have become my heroes.  Two of my heroes I get to see every October and April when I take my treatment at Nationwide Children’s Hospital— those people are my Hematologist and my nurse who administers the IV medication. 

My Hematologist has been my specialist for 19 years and my nurse has been administering medication and treatments to me for 14 years. Just like the super heroes in the film, my doctor and nurse have always been dependable. I know I can always call on them and they will be there for me right away.  A Marvel always fights the bad guy who has masterminded an evil plan. My doctor and nurse fight my immune system’s “evil,” plan to wreak havoc on my body.  And of course, every hero has a super power such as flying or becoming invisible. My doctor and nurse’s super power is there gut instinct— many times they didn’t know the clear answer to my treatment plan, but they went with their gut instinct and they have always been right.

One of the most interesting aspects about every Marvel movie is the character’s back story.  They weren’t always a hero, so how did their heroism come to be?  Woven into the film is the character’s realization that they were different— they had something special to offer the world. 

I know for a fact that my Hematologist and nurse aren’t only my heroes, but they have touched thousands of lives over the years.  Today, I want to share with you their story they shared with me, so you will know how these two Marvels came to be. 

Whitney: How did you decide you wanted to be nurse?

Nurse S: Well, it’s kind of funny.  As a kid, I was terrified of needles and shots.  I mean, I dreaded it anytime I had to get any vaccine.  I was in the 6^th grade and it was time for me to get my MRI shot and once again, I was terrified.  Well the nurse I got did such a great job.  She really helped me through the process of having to get that shot even though I was so scared.  I had always been interested in science and so when it came time for me to decide what to do in college, my mind went back to that nurse who gave me my shot, and I decided I wanted to help others just like she helped me.

Whitney: How did you decided to be Hematology nurse?

Nurse S: I actually started out at Cincinnati’s Children’s in Neurology  and when I moved to Columbus, that’s the department I wanted to work in, but there were no job openings in those specialties.  The only two positions available were in Hematology and the PICU and I chose to become a nurse in hematology and I have been here ever since. 

Whitney: What is the most rewarding aspect of your job?

Nurse S: Definitely being able to ease parents and children’s minds.  Whether it’s helping the patient through the poke of an IV or soothing the child while I give their meds through their port— I’m doing what that nurse did for me.  Making the day easier for my patients is the most rewarding part for me.

Whitney: What’s the most difficult aspect of your job?

Nurse S: Death is definitely the most difficult aspect of this job, because you get close to your patients, getting to know them and their families.  I don’t experience that as much as some since I work the day hospital and not in-patient, but what I have experienced is extremely difficult.

Whitney: How many years have you been a doctor? What facilities have you practiced at over the years?   

Dr. O: I graduated from the University of Pittsburgh School of Medicine in 1988.  I completed training in general pediatrics from what was then called Columbus Children's Hospital (now Nationwide Children’s) in 1991. I completed fellowship training in Pediatric Hematology/Oncology from Children's National Medical Center in Washington DC in 1995. I was on staff as a Pediatric Hematologist/Oncologist at CNMC from 1995-1997. I came back to Nationwide Children's in Columbus in 1997.  

Whitney: What made you decide on hematology/ oncology as a specialty? 

Dr. O: My original goal was to practice in an academic medical center. I was planning on working primarily in the lab doing research and spending about 20% clinical time (patient care). As it turned out I have spent most of my career in patient care. I've focused most of that time in the area of pediatric brain tumors.

Whitney: What is the most difficult aspect of your job?

Dr. O: For most of us doing this type of work, the most difficult aspect of the job is the unknown. When we can't help a patient overcome their illness because medical science hasn't found all the answers, we as caregivers can feel frustrated.  That doesn't mean we give up on the patient, but we focus our attention on symptom relief and anticipating problems rather than a cure. 

Whitney: What is the most rewarding aspect of your job?

Dr. O: I find the "reward" comes from the fact that we’ve treated each patient as I would want my family member or own child to be treated.  Even if medicine couldn't cure the patient's condition, I know we provided the best medical care possible.   

Whitney: We’re coming up on 19 years of you being my doctor. Is there a memory you have looking back on these 19 years?

Dr. O: I distinctly remember reading all the medical reports from the other institutions you were seen at before you came to Nationwide.  This was even before I met you.  I thought, I better be very prepared for this patient/ family. I even called the Immunology doctor in North Carolina to discuss you.  When I first saw your mother's notebook of all the details she had kept, I was happy I had done my homework.


Whitney: What advice do you have to foster a positive doctor/patient relationship? 

Dr. O:  Listen, Listen, Listen. There is no detail too small that a patient may be trying to tell you that could turn out to be important. Also, physicians would be better served if they were more humble and kept a sense of humor.  We don't know it all.