The Journey of a Lifetime is Always Worth the Wait

Have you ever had THAT feeling? The feeling in the depths of your soul that God is about take you on an exciting adventure?

         I’ve had IT a few times in my life.

         When my immunologist told me that he sent my medical case to The National Institutes of Health, I just knew I was on the brink of something life-changing.

 In 2010, I was at a routine follow-up exam with my immunologist. During that appointment, my doctor informed me that he sent my case to be evaluated at The National Institutes of Health, (The NIH).  There was a new disease that was discovered at the NIH called DOCK8, and the symptoms I had exhibited were very similar to those for this illness. My doctor presented my case to the immunologist at the NIH who discovered DOCK8 in hopes that she would accept me into that protocol.

 He told me there was a possibility I could receive a phone call from the NIH if she felt I was an appropriate candidate for DOCK8. I didn’t fully understand the type of medical jargon my immunologist was using, but immediately an excitement came over me. For the first time in my life I thought, this could be it. I may finally know what had been causing my illness.

   If you’re confused about what the NIH is and what protocol means, don’t feel bad because it’s taken me a long time to understand what it fully entails.  The NIH is our government’s medical-based research facility located in Bethesda, Maryland.  At this hospital many new diseases are discovered, known illnesses are researched, and treatment and medications are explored as solutions to help the quality of life for people who suffer from diseases.

         A protocol is the guidelines, rules, and symptoms a person must fit into and show signs of to be accepted into a NIH doctor’s particular research program.  

 In order for me to be accepted into DOCK8’s research protocol, not only did I have to exhibit the characteristics of the disease, but I had to fit into the set guidelines and rules this particular research doctor had deemed necessary.

The next few months, I was on the edge of my seat waiting to be contacted by the NIH. In my heart of hearts, I knew it was just a matter of time before someone would reach out to me.

 After three months of waiting, I received THE phone call. The woman who contacted me was the research doctor’s nurse and he explained that her boss believed my case DID fit the DOCK8 protocol. The first step they required was preliminary blood work at Nationwide Children’s to assure my labs lined up with what my medical records showed.  She cautioned me to not get my hopes up, because there was still a chance my bloodwork results would not fit in the guidelines.  Once again I understood the reason she cautioned me, but the feeling was still strong— the story God was writing for me had a new exciting chapter I was about to live.

After several months of the NIH studying my bloodwork, the results came back. I received the word I DID INDEED fit the DOCK8 protocol; and the research doctor wanted to set-up a week for me and my parents to come to the NIH for more testing.

 Even the research nurse told me I might not have DOCK8 and more than likely, the doctor and her team would never unearth what was wrong with me— it didn’t damper my spirits. There was a good chance I would only give them valuable research through my case and nothing more.  It was something they said to every patient, so false hope is not given and end in disappointment.   I understood their message, but once again, I felt the Holy Spirit whispering in my heart I wouldn’t be one of those patients.

My first visit with the NIH was in August of 2011.  That week was a whirlwind of tests, procedures, and being seen by multiple speciaists .

 By the end of the week my parents and I were physically and mentally exhausted from walking to one part of the hospital to another one and sharing every piece of my medical history from birth to present. Through all of the testing, I endured that week, it was determined I did not have DOCK8.  Despite these findings, my research doctor assured me her and her team were committed to my case.

If you were wondering was I disappointed I didn’t have DOCK8—Definitely Not!  It would have been a quicker journey to finally receive answers, but I believed God had an exciting twist He would reveal in His time.  I also came to see God has given me another team of amazing doctors and nurses of whom I have become very close. 

Since becoming a patient at the NIH, I have found some of the public’s persona of this facility is negative.  People assume because it’s a government research hospital, the people who work there are robots treating their patients like test tubes and not like people.  What I have come to discover is this is not accurate at all.  Every doctor and nurse I have come in contact with has been so personable and they have respected me as person.  What has impressed me the most with the NIH is they have assured me that if there is any test or type of research I’m not comfortable with, then I have the choice and right to opt out.

 There was just one little glitch when I chose to participate in the research they requested.  I came to see test results wouldn’t be available within a day or even a week.  No, it would take months and months of research in her lab, making long spans of time just waiting.

I recently attended a writing conference and each morning there would be a devotion before everyone would attend the different sessions. One particular day, the woman gave her devotion on waiting, because in the world of writing there includes a fair amount of waiting.  She gave us the clever and profound analogy that writing is one typo off from waiting. 

I have to laugh at the fact I’m immersed in two worlds where waiting is not only normal, but should be expected.  Thankfully the waiting has not only paid off, but has brought me tremendous blessings.

In 2013, three years after I began my journey with the NIH, the very same nurse who told me not to get my hopes up for my doctor and her team discovering what had been causing my illness, gave me the most amazing news.  They had indeed discovered what was wrong with me.  I must admit that while writing this, I have tears in my eyes; because I still remember the closure and elation I felt when I heard those words.  Little did I know at that time, God wasn’t finished with this chapter yet.  The plot was about to thicken in a way I never expected or dared to dream. 

I went to the NIH in November of 2013 for them to explain everything to my parents and I.  I was taken from the waiting room to an exam room and to my surprise…are you on the edge of your seat? 

Good!  Because this is the perfect place to stop, so I can share the rest next week.

Why you may ask? 

Because God wrote this story and as with all stories that God writes, it’ll be worth the wait. :)