Brinly Ford Brinly's Story

First post: May 16, 2017 Latest post: Jul 26, 2017

Our BrinlyAnn was diagnosed with Nodular Lymphocyte Hodgkins Lymphoma in January 2017.  It all began, unknown to us, a year or more prior.  She had a small bump form behind her left year.  It seemed to be swollen lymphnode due to a minor illness, which is totally normal, the doctors said.  We were fine with that until it began to gradually grow.  It grew a little bit here and there, but still not something we were overly concerned with, it didn't hurt, nor was it an issue with her pediatrician.  Then at the end of November 2016 it started to grow significantly.  It was now the size of a golf ball, about 7-8 cm in diameter and began causing discomfort.  Now was the time to do something about it!  Our pediatrician was immediately concerned and suggested we have it surgically removed as soon as possible.  We scheduled the surgery as soon as we could.  
On Friday, January 13th, 2017, it was removed, entirely.  The surgeon extracted the entire whole lymphnode, still not knowing it was a lymphnode.  He thought it was a salivary gland full of necrotic cells.  He continued to say he did not think that it was cancer, but would have it tested anyway.  Later, we would learn this is a common mistake.  
By the following week, biopsy results were in, but we struggled to  get word due to some communication errors.  But on Friday, January 20th, 2017, we were notified this "bump" was indeed cancer, a blood cancer, Hodgkins lymphoma. At this point, the believed it was Nodular Sclerosis Hodgkins (a classical Hodgkin's).  This sent our minds reeling with the unknown.  At this point we had no idea how far it had spread or what treatment would be like.  We would meet with the oncologist the following week.   She assured us that this was a very treatable cancer, and would only require a few months of chemotherapy, if needed at all.  But first they wanted to verify the biopsy diagnosis with their pathologists.  
We got call after call about scheduling tests and appointments for the following several weeks.  After a PET scan, a pulmunary function test, blood tests, EKG, Echo, etc.  They found no significant points of interest in her PET scans and staged her at 1a (asymptomatic).  BUT the diagnosis was not confirmed by their pathologists.   Six weeks later, after 9 pathologists studied her biopsies, including a world renowned lymphoma specialist, her official diagnosis was Nodular Lymphocyte Predominant Hodgkin's Lymphoma.  This is one of the rarest types of Hodgkin's Lymphoma known of, and it isn't well understood.  We were told it was very slow growing, as in years and years to grow....unfortunately, that didn't ring true for Brinly.  
At this point, the suggested treatment was removal of the affected lymph node, and then watch at wait.  So that is what we did for about two weeks. Another bump, very close to the one that was removed, developed.  We watched and waited for about 4 weeks.  It only grew larger and larger.  
So, we had it removed on Monday, April 24th, 2017.  The results were the same, Nodular Lymphocyte Predominant Hodgkins, but this time they sampled some surrounding lymph nodes.  Another one came back positive for the cancer, making a total of 3 known affected lymph nodes.  Now the doctor wanted to talk about some treatment.   
Treatment began May 11th, 2017, six months after our initial decision to remove the first node.  She finished 3 cycles of chemotherapy, and as of August 2017 she is free and clear of any evidence of cancer!!  She started 8th grade on time, her hair is returning, and she is doing well.  She celebrated with family, friends, coworkers, medical personnel, teachers, and neighbors on Sept. 8th by Ringing the Bell of remission at Texas Children's Hospital in the Woodlands.  
We have been overwhelmed by the love and support of so many friends, family, neighbors, acquaintances, and even total strangers.  There are so, so  many good people in this world.  God has been by our side, giving us peace, and we turn to Him continually.

CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.

To interact with Brinly’s website, sign in or register today.

By registering with CaringBridge, you will join over 300,000 people a day who are supporting friends and family members.

Sign In Or Register