Nellie’s Story…told by her mama (Lisa):

On July 27, 2017 the news came that no parent would ever want to hear. My daughter, Nellie, found out at the age of 22 that she had cancer and needed surgery immediately. She was diagnosed with Papillary Thyroid TCV (Tall Cell Variant) Cancer. To help stop the cancer growth, many lymph nodes would need to be removed as well as her entire thyroid. Nellie had just graduated college with her teaching degree and was about to start her career as a HS Special Ed/Math teacher in the PV school district. This was not the way anyone wants their child to start their young adult life. 

It’s completely out of my character to reach out for help since I’m the type to usually GIVE help. My heart is breaking for my daughter and under these circumstances there is not much I, and as most would agree, wouldn’t do for their children. When you think of your own children or your nieces or nephews struggling, the only thing we want most for our children and family is for them to be healthy, happy and successful in life. I say those words every single day for my 4 kids when I pray and when I see 11:11...yes, I’m superstitious that way! Hell, I’ll take anything I can get! 

Nellie to this day is maintaining very well after all of her treatments (see her diagnosis story below) over the past 4 years. Thankfully, medical costs have been covered by my health insurance. However, now that Nellie turned 26 the financial burden is falling onto her lap and her insurance is not covering all that is required to keep her health up. On top of her college loans and every day cost of living, she is on a teacher’s salary which we all know is not a lot of money to cover the unique costs of situations like this. The maintenance costs of daily life saving medication supplements, Thyroid replacement, maintaining PET scans, ultrasounds, MRI’s, Calcium checks and panels, doctor visits, etc. All of the monthly medication and essential supplements are all weighing very heavily on her, and some of these special supplements and appointments are very expensive. She’s at the beginning of her journey as a young adult and is having to take on financial debt way beyond her means. 

It is my hope that if you have the financial means to help her with her medical expenses, (even if it’s only a small amount) together we can help ease her financial struggle. I will help her set up a medical fund to cover the next couple years. I know she will be grateful and I truly appreciate from the bottom of my heart your willingness to donate whatever your heart feels called to give. If you can’t afford anything, please send good thoughts and prayers of healing her way.  

The Story of Her Diagnosis:

Nellie has been an athlete since the age of 5. Healthy and in great shape, and compared to her 3 brothers, was rarely at the doctors. When I started noticing excessive weight gain during her visits home from college, we went to the doctor to have bloodwork done in case there was something underlying going on. 

The doctor noticed that her TSH levels were off and started her on meds to level them and would tell me that she needs to watch what she eats. This of course infuriated me to the point that I actually visualized myself reaching over his desk and punching him in the face. Nellie was on the girls rowing team, a very active sport, in college while studying to be a high school math teacher. She was working part time at a school and was having to travel on multiple buses every 2 weeks to get regular blood work done so the TSH meds could be altered as needed. 

I don’t have to tell you how stressful this was on Nellie during the first few years of college. I recall sometime in May of her senior year that she said she felt a lump in her neck. Just a few weeks prior to her graduation. My heart stopped.

During that time, I was planning on meeting my mom in Chicago for Nellie’s graduation, and was planning 2 grad parties back in Phoenix since Marcus was graduating from PV High as well. I was closing on my new home and had to be out of my rental by the end of May and was finalizing my divorce. I did my best to stay positive knowing that my baby girl was not feeling well and in trouble. 

In the meantime, I had been researching for a specialist to schedule an appointment with. We were referred to an ENT after checking out the swollen lymph node, and they quickly knew we needed a biopsy surgery. We did a needle biopsy as well, but that wouldn’t show cancerous results. They had feelings it could be cancer, so they quickly scheduled this biopsy surgery. Which ultimately led to the diagnosis. Everything happened so quickly because the cancer that had been growing was, unfortunately, ravaging her lymph nodes and her surgeon knew this. Within 4 days of her appointment she was scheduled for an even bigger surgery. The one that ultimately would change her life.

On July 29, 2017, Nellie had undergone a thyroidectomy which included removing 120+ lymph nodes during a radical “right side” neck dissection. This is a much bigger surgery than normal, and the surgery lasted almost 9 hours. This left her with permanent facial paralysis as well as possible life-long hypoparathyroidism, a chronic deficiency in calcium, nerve damage and pain as well. To add to her discomfort, Nellie had received a horrendous burn on her lower back during surgery that was caused by some “grounding issue”. Don’t get me started on THAT situation. All my focus was on keeping her comfortable which was nearly impossible due to the pain that she was in. Nellie is the epitome of what a warrior is. 

Because of this total thyroidectomy, her parathyroid glands were damaged which means she will require very high doses of calcium to just perform daily functions (I’m talking 30,000 mg of calcium per day) Without the proper dose on a daily basis her body was having muscle convulsions, which constricted the neck muscles, causing her to have a hard time breathing. She has been rushed to the hospital at least half a dozen times since her 1st surgery and this could happen with missing ONLY one dose of calcium. She is still living with this, but is taking less calcium these days because her body is slowly healing itself. 

We had found a medication that replaces parathyroid hormone, but each daily injection was going to cost 3-5k a day. When it was recalled, Nellie had to maintain an extremely high dosage of calcium on her own which of course was difficult to consume without wanting to vomit it up. This management became more difficult after there was a recall of her parathyroid medication, called Nat Para, which was being provided to her through a rare disease nonprofit charitable foundation who was covering the hundred thousand dollar bill every month. This calcium deficiency was just a cherry on top of all of her nerve damage from surgery.

Next course of action was that Nellie would need to be treated with radioactive iodine. After it was administered on Sept 30, 2017, she was not allowed to be near anyone and had to be secluded for several days. This later caused damage from radiation to her salivary glands. But a first initial scan showed that the cancer was gone and we were elated! 

Then after a necessary PET Scan and MRI was completed, it had shown that the cancer was already growing again. Due to this being such an aggressive form and she had probably had it for years without it being diagnosed, a 2nd “left” neck dissection was needed. It was at that time that we scheduled to meet with a doctor at Stanford and flew to California. It was confirmed with the panel of doctors that another dissection and treatment would be best. The second surgery was performed on March 14, 2018 (Nellie’s Bday). This was also another 6 hours of surgery to remove many lymph nodes on the left side of her neck, with a higher than normal percentage of them being cancerous. Then the final treatment of radioactive iodine was administered. We were informed that she can no longer be provided this type of treatment because she was given the maximum dose and all we can do is pray that the cancer would stop growing. 

The cancer is currently as small as it’s ever been. But that doesn’t mean it’s gone. And it doesn’t mean it’s not a constant worry about if it will start to grow again. Through all of this Nellie developed debilitating depression and anxiety which she has been treated for over the past couple of years. She's been in therapy but will be living with the conditions that this cancer has caused her. Her calcium deficiency is something she has to fight against every day, because if she doesn’t regulate her own calcium absorption she essentially cannot perform daily functions and could lead to serious life threatening issues. 

Nellie is truly amazing and maintaining very well despite the continual lifetime maintenance that will be required because of the cancer. She is slowly becoming more and more able to get back to normal things in life but the medical expenses she is going to face are going to be constant. She has consistent appointments to make sure the cancer is not growing again, as well as regular thyroid replacement, physical therapy for her neck, along with calcium deficiency treatments. She has been fighting every day since her diagnosis. She has had to suffer through enough pain for the last few years that no child deserves.

I appreciate you taking the time to read Nellie’s story. It wasn’t easy to write as there was so much more that went on along with every emotion possible. We think nothing but positive thoughts and are very grateful to our family and friends for being so supportive. 

Peace, love, HEALTH and happiness!!

❤️

Lisa, aka, Mama

ps.

Butterflies are the symbol of thyroid cancer which is why you see them tattooed on her.