NIH Day 2

We started the day bright and early at the Pediatric Clinic, meeting with our favorite Nurse Practitioner, Anne.  Anne reviewed our schedule with us, performed Jane’s physical exam, and consented us for several research protocols related to Jane’s surgery.  It turns out that there are lots of researchers who are looking to study fresh samples of neurofibromas, and Jane’s tumor will be going to at least seven different scientists to help study the effects of various treatments on the tumor cells.  I explained to Jane that the reason she had to give permission for her cells to be studied was to avoid situations like that of Henrietta Lacks.   In 1951, Henrietta Lacks had surgery for cancer and the tumor cells were used for research without her knowledge.  These cells, known as HeLa cells (“HeLa” from “Henrietta Lacks”), are now the most commonly used human cell line in studying cancers, even though the patient from whom they came never gave permission for this.

Jane commented that if her cells led to a breakthrough in neurofibromatosis research, she would allow them to be called “JaCo” cells :)  We also joked that if her tumor was going to be split between seven different researchers, maybe that made them Horcruxes!  (A little Harry Potter humor.)

An aside: our nurse practitioner Anne is an officer in the United States Public Health Service Commissioned Corps, which is one of the uniformed services along with the US Army, Navy, Air Force, Marines, and Coast Guard.  She told us that she only just learned yesterday that she will shortly be deployed, though she doesn’t know to where, to help the PHS with the pandemic.  We feel so lucky that we got to see her during this visit.

Next, Jane had her blood drawn and IV placed so she could receive contrast for the MRI.  The nurse ended up drawing 10 tubes of blood!  Then we headed to the MRI.  Unfortunately, there was a mix-up in the Radiology Department, and they could only perform Jane’s abdominal and pelvic MRI, not the one of her face and ear, nose, and throat.  The additional MRI has now been added to our schedule tomorrow afternoon once we’re admitted to the hospital :(  In a way, it was just as well she has to do the MRIs in two parts because for the abdominal and pelvic MRI today alone Jane spent over 90 minutes in the scanner.

After the MRI and lunch we stopped in the lab to have Jane’s EKG done.  We chatted with the friendly technician there, who told us stories about Dr Fauci, who has understandably become somewhat of a rock star at the NIH Clinical Center.  He told us to look for the giant poster of Dr Fauci in the Clinical Center atrium, and instructed us to watch for him in the halls surrounded by his security detail: “Just look for a group of people in black suits surrounding a little guy in a white coat.”  It turns out that Dr Fauci, known for his huge contributions to science and medicine, is little!  Jane was quite tickled to learn that she, at 5’9”, is two inches taller than him.

A tribute to Dr Fauci in the NIH Clinical Center atrium

Now we’re back at the Children’s Inn for the night, resting up for a big day tomorrow:  x-rays, echocardiograms, more MRIs, hospital admission, and consultation with all our surgeons.  Tomorrow night we’ll report from the hospital.