Who is Charlotte Grace?

Charlotte Grace is my joyful, four-year old daughter who was diagnosed with a malignant brainstem and spinal cord tumor in April 2011, at only three-months old.

Charlotte at 3-months old - just before diagnosis.

Since then, she has undergone six surgeries and numerous other medical procedures.  Despite fighting childhood cancer and living with multiple special needs, Charlotte is one of the sweetest and silliest little girls on the planet.

Charlotte has an older sister, Elyse, an older brother, Henry, and a younger sister Marian.

She is currently receiving chemotherapy and other medical treatments at Duke University Medical Center.

Oh, and here's Charlotte watching the snow fall while keeping warm under her quilt! Because it's the little graces that bring so much joy...

Charlotte's Medical Journey:

Diagnosis: 

   At the time of Charlotte's birth, in January 2011, my husband's Army job found these Virginia natives living in Fort Huachuca, Arizona.  Charlotte's birth was uneventful, and she seemed a healthy baby until about 2-months old.  Around that time, her dad and I started noticing that her arms would appear weak at times.  At exactly three-months old, I took out my AAP book and looked at the milestones for that age.  She was not meeting four or five serious milestones.  Namely, she could not hold her head up, and she also appeared to be in pain whenever her head would fall back or if she were jostled in the least. Also, she was not reaching for or grasping toys, and in fact her arms were becoming increasingly paralyzed.  So we took her to the pediatrician, who sent us to a neurologist, 1.5 hours north of us in Tucson, Arizona.  On April 26, 2011, the neurologist ordered an MRI which showed a massive tumor inside Charlotte's spinal column.  We were then rushed by ambulance to the only pediatric neurosurgeons in the state at Phoenix Children's Hospital, another 1.5 hours north of Tucson.  The PICU team was extremely compassionate as they explained that Charlotte's tumor was very rare, extending from mid-medulla to T4, diffuse inside the spinal column.  Based on her very young age and how large the tumor was, they believed it to be growing extremely quickly. Furthermore, the location of the tumor is in the most precarious place in the entire human body: the brainstem.  So removing the tumor would be near impossible.  We wanted to do our due diligence, though, and get a clear diagnosis, so the neurosurgeon did a biopsy.  The tumor appeared to be diffuse within the spinal column, so he was unable to cut out any portion of the tumor. We had many meetings with the palliative care team, who sent us home with nothing more than a number for hospice in hand.  Everyone told us to just go home and enjoy her.  Everyone except for Charlotte's oncologist, Dr. Amy.

Port Placement and Starting Chemo:

   Dr. Amy sent the slides of the tumor tissue to the best pathologists in the country. Yet, the pathology proved to be confusing at best.  After five weeks and numerous opinions, we went with the only diagnosis offered, that of "gliofibroma."  The only thing that was clear was that the tumor was a low-grade process.  So Dr. Amy called us back in to offer us some hope.  It was growing slowly, so there would be time to try chemo.  The first thing to accomplish, though, would be a surgery to place a central line (a sort of permanent IV line) in order for Charlotte to receive the chemo.

Henry, Elyse, and Charlotte, just after beginning chemo

   On June 16, 2011, Charlotte and I traveled the three hours back to Phoenix Children's Hospital for the port placement surgery - an outpatient procedure.  There was a complication during surgery which resulted in Charlotte developing SVC syndrome.  Put simply, blood was restricted from flowing back into the heart from the upper extremities.  She was in a dire state for eight hours, until the cardiac interventionalist was able to place two stents, and in doing so, save her life.  As a result, Charlotte endured significant brain damage to the frontal and occipital lobes.  To this day, her speech and cognition are delayed.

  Instead of this surgery being an outpatient procedure and beginning chemo the next day as planned, we found ourselves in the ICU for a second week-long stay.  After that, we took a week off before beginning her 10-week course of chemotherapy (carboplatin/vinchristine) which continued the remainder of the summer.  Her MRI at the end of August 2011 showed stable disease.

Moving to North Carolina:

  During the summer of 2011, my husband finished his work in Arizona, so the Army was ready to move us. The personnel in charge of my husband's orders asked us where we wanted to take Charlotte for appropriate medical care.  After consulting Dr. Amy, we asked to be moved to Fort Bragg, NC, in order to take Charlotte to the renowned neuro-oncologist, Dr. Sri Gururangan, at Duke and to be closer to our families in Virginia for support.  

   When we arrived in North Carolina, we attempted to continue Charlotte's chemotherapy regimen.  But at the first appointment, we discovered that the central line (whose placement nearly cost her life) had shifted out of place somewhere between Arizona and North Carolina (probably in west Texas).  So it was time to have a new central line and port placed.  She had her second port placed on November 3, 2011, but it slipped out of place by morning.  So the very next day, she went back into surgery to have her third port placed.  During this hospital stay, her blood work showed her to be suffering from severe malnutrition.  Her recovery from surgery was far more difficult than it should have been, as well, due to this malnutrition and a few other compounding factors.  So we found ourselves inpatient for nearly the whole month of November, bringing Charlotte back to a healthier state.  It was during this time that a feeding tube was placed.  She endured an ND tube for five months, then an NG tube for another two months, before getting a G-tube placed in July 2012.

Neurosurgery:

May 2012

   From November 2011 through May 2012, Charlotte was too unhealthy to undergo chemotherapy.  Furthermore, her scans were showing stable disease.  So for those months, we focused on getting her healthy through her feeding tube diet and getting her stronger through physical and speech therapies.  Unfortunately, Charlotte's May 2012 MRI showed progressive disease: the tumor had clearly grown.  Not only that, but there was evidence of metastatic disease, too: cancer cells covering the base of the brain above the tumor, as well as cancer cells coating the entire spinal column.  At this time, we made the very difficult decision to take Charlotte in for a second neurosurgery.  We wanted her doctor to see if he could remove any portion of the tumor, since it had changed in composition as a response to her first round of chemo.  We also needed another biopsy in order to run further tests for a clearer diagnosis; we wanted to be sure we were doing the proper course of chemo.

   On June 26, 2012, Charlotte was taken in for neurosurgery.  Dr. Gerald Grant was able to get more tissue for biopsy, and he began to debulk the tumor as well.  But there was then a complication with her port access which caused him to end the surgery early for the sake of Charlotte's safety.  He was able to add a graft to her spinal column, though, which has allowed the CSF to flow more freely and has returned a bit of mobility to her arms.  For all intents and purposes, however, her arms remain paralyzed (as they were at diagnosis) due to the pressure that the tumor exerts on the nerves which control them.

Pathology and Resuming Chemotherapy

   We waited two months for the pathologists to return the same diagnosis of "gliofibroma."  With this in hand, Charlotte began a course of chemotherapy in early September 2012.  For the next two years, we traveled about 1.5 hours (each way) from Fort Bragg to Duke once each week for her to receive this treatment.  It was well worth it as her MRI scans showed a marked improvement: the tumor had shrunk a bit and there was a significant decrease in metastatic disease as well.  She ended this course of chemotherapy in September 2014.

Charlotte with Dr. Gururangan on her last day of chemo

   Even following the confirmed diagnosis of "gliofibroma," Charlotte's oncologist, Dr. Gururangan, was dissatisfied with this answer.  And with good reason - there was far too much disagreement among the pathologists as to what type of tumor this was... or if it were even a tumor at all!  Furthermore, "gliofibroma" is not even one of the 130 brain tumors recognized by the World Health Organization, as there are less than 30 cases reported in the last 30 years.  So while we had enough information to warrant continuing chemo, he wanted more answers.  Thus, he ordered a test to see if it could possibly be a mutation of another, more common childhood brain tumor.  His hunch was correct; the test returned a positive result for the tumor having a histogenesis of "pilocytic astrocytoma."  So this is what we now consider Charlotte's diagnosis.

Day to Day Life

   For the most part, one would never know that Charlotte has endured so much from nearly the day of her birth.  She is so sweet and so full of joy.  She loves each of her family members as any four-year old girl does: she loves to be kissed and cuddled by me and her papa; she looks up to her older brother and sister and loves to play with them; and she acts the big sister towards the baby by "looking after her" for me when I need her to "help."  The paralysis of her arms and general upper-body weakness has greatly hindered her development.  Thus, she has been using a wheelchair for mobility since she was one-year old.  Still, we are hopeful that she will one day walk, and we are working toward this goal in physical therapy.  Charlotte also has continuing speech therapy to help her to speak appropriately (due to the brain injury) and to help her learn to eat.  The majority of her caloric needs is met through tube feeds: pumping formula directly into her stomach.

   

   While there might be reason to be bitter in this situation, we have many reasons to be grateful.  From our first days in Phoenix to our time now at Duke, Charlotte's teams of doctors, nurses and other health professionals have been exceptional.  They have provided the best care for her, while being kind and compassionate to the entire family.  Also, while we hear many gripes about Army life, our experience has been wholly positive.  The health insurance provided has been excellent, and my husband's unit has always been understanding of our family's situation: giving him time off to be with Charlotte if she is hospitalized, among other things.  The Army also gave my husband a job at Fort Bragg so that we could take Charlotte to Duke.  Most importantly, though, from the devastating day of diagnosis, we have rested in the knowledge that God has all our days numbered and ordained.  He created Charlotte and loves her even more than we do.  There are many evidences that the entrance of sin in this world is causing our decay.  Yet we have the hope that Charlotte (and all who hope in Jesus) will ultimately be healed because in his death and resurrection, Christ conquered sin and death.

Last updated: February 23, 2015.