I don’t talk as much about the genetic disorder that Rebecca and I have. Mainly because it has often taken a back burner to things. Rebecca and I both have Neurofibromatosis. http://www.ctf.org/Learn-About-NF/Diagnosis-of-NF1.html
I recived my diagnosis approximately 26 years ago. My parents had long been curious about the “freckling” that I have on my skin. Becca and I both have multiple large freckles all over our body. Some the size of a pea, some larger than the size of a half-dollar (albeit they are oddly shaped). As it happened, there was a free skin cancer screening at Crabtree Mall. My mom took me, thinking that maybe this guy would know what they were. I know a few of my spots have been present since I was a baby, but I also know more developed as I grew older. The same trend is present with Rebecca. Anyhow, the dermatologist running the screening took one look at my spots and said they were not skin cancer, but was pretty sure he knew what they were. He mentioned Neurofibromatosis and suggested we get a referral to a Neurologist. And so, my journey began.
I do not recall my first appointment at Duke. There are certain things about those early days going to Duke that I do remember and it strikes fear in me. Back then it was not a matter of going into a bright, colorful Children’s Clinic. No! The Neurology Clinic was in one of the basements of Duke South. Dark wood paneling lined the walls. Poor lighting the hallway and waiting area. I remember taking the “shuttle” thing from one hospital to the other. But for years and years all I remembered was the elevator that moved sideways. Between that and the number of elevators that Duke has that have doors that open on either side has led to my great distrust of Elevators!
I remember the Neurologist telling my parents “Well she will never be a ballerina”. Little did he know that I wanted so incredibly badly for my parents to let me take dance lessons. It broke my heart! I vaguely remember some other poor little girl finishing her MRI scan and being wheeled away crying and being so upset. It did not bode well for me!
My parents got some pretty upsetting news from that first MRI. I had 4 tumors.
I remember the entire family being so incredibly upset, fearing I was going to die. None of the tumors were operable. There was no chemotherapy option.
For the time being it was wait and see.
I distinctly remember swearing that God would not let those tumors grow until He allowed Doctors to have a way to remove them. I also swore that one day there would be lasers that could get go them. (this was before CDs folks – so how my little 10-year-old self knew ANYTHING about lasers is pretty miraculous).
My parents had a long agonizing wait for the next scan, and then the next one and subsequent ones to show that the tumors did not grow. 26 years later and there has not been any growth.
Flashback to this past Tuesday. Becca had her annual MRI. I did not plan on a meeting with either her Neurosurgeon or Neuro-Oncologist afterwards. After all, her gliomas have been stable so long, I didn’t see a need for an appointment. They could call with results. Even the Nurse for the Neuro-Oncologist agreed it was a fine decision.
Famous last words!
Thursday the Neurosurgeon called. She has a NEW spot. Not seen on previous MRI scans. It is 5mm. Yeah – I had to google that too. It is slightly larger that the diameter of a #2 pencil. That gives you pretty good perspective. According to the doctor that is “tiny”. Our next step is waiting 3 months for another MRI.
So now I sit here, with a chance to look through the perspective glass. I know how my parents felt. Somehow I don’t have that same feeling I did when I was 10. I can not summon the “it WILL be okay”. When I was 10, I didn’t need anyone to tell me it would be okay. I just KNEW. Now, I don’t know. I can’t say if being a parent has changed me that much or if my Faith is faltering. I know she will be okay, don’t get me wrong on that one. I know God has His mighty hands around her. But I do not feel as assured about timing, or the overall sense of things like I did when I was a kid.
I ask you to pray with me. Pray for Becca’s healing. Pray for David and I as we muddle through this as parents. Pray for the doctors – that the right decisions will be made in the months to come.