Laurel Bares

First post: Mar 25, 2017 Latest post: Jun 18, 2018
Ask anyone, Laurel is a feisty and tough kid. Here's 3 examples of her tenacity: 
- In utero, she made me crave apples to the point I have a hard time eating them now.  Maybe she was gearing up her strength even then.
- She stayed cozy in the womb to the very last second. I was scheduled to be induced at 6 pm on March 2nd. Brad and I were told to stay up late and sleep during the day so we would have strength for her delivery. We went to bed at 1 a.m. and my water broke at 3 a.m. Laurel decided enough was enough and came into this world on her own terms.
- Her strong voice. Laurel began vocalizing early and once she discovered her voice, rarely kept quiet. In the mornings she would scream MAMA and when I arrived, had a big smile on her face.

When we think back to her strength, it is clear that Laurel was preparing herself for the battle of her lifetime: fighting Stage IV Neuroblastoma. 

So how did we end up here? Sometime during the past two months Brad and I began voicing concerns about some of Laurel's behaviors and eating habits. She lost interest in her favorite foods, became picky, and acted like a typical fussy almost 1 year old - so it was hard to decipher if something was wrong. We voiced our concerns to our pediatrician over and over again at her appointments.  "Laurel's lost weight, is that OK?" I asked countless times. Food intake was my biggest concern and our pediatrician reassured us again and again that Laurel was just tall and of "super model status," perfectly "right on track," and there was "no need for concern."

But deep down, call it mother's intuition if you will, I knew something wasn't right. On March 6th, Laurel had her 1 year appointment. She had a full examination and shots. When the pediatrician examined her abdomen and belly, Laurel shrieked in pain. The pediatrician stated that this was because Laurel "knew she was about to get her shots and most kids become scared.." The pediatrician stopped examining her abdomen and proceeded to give her shots. When I asked about her lack of appetite, the pediatrician stated we should give her things that she enjoyed - ice cream or sweets to perk her up.

Now fast forward two days to March 8th. Laurel was still eating just a little bit of food. Sometimes, she spit out what was in her mouth. Laurel didn't care for her yogurt or her favorite lunchtime food, smoked salmon. She wanted to sleep more and she played less. The two following days I called the pediatrician relentlessly with increasing concern. I brought her in to the pediatric office again on March 10th. The pediatrician again examined her, manipulated and touched her belly, and sent us home with instructions for Laurel to take Tylenol and make sure she had plenty of fluids.

The next two days on Saturday and Sunday, Laurel barely ate. She did not drink her normal 4-5 bottles. She had 1 bottle each day and slept. Knowing something was seriously wrong, I called the pediatricians office several times and they (repeated advice about letting her rest and giving her fluids). Brad called too looking for more specific advice. 

Enough was enough and when we woke up at 1 am early Monday morning (March 13th), Brad and I realized her weakness and I rushed her into her carseat and drove right to the ER at  the Beth Israel Emergency Room in Plymouth, MA. We thought she must just be dehydrated and some IV fluids were perk her right back up. The hospital examined her, gave her an IV and a chest x-ray and we were rushed by ambulance to the Children's Hospital Emergency Room.

Brad drove behind the ambulance and we arrived at Children's Hospital by 5 am. A swarm of doctors, nurses, and residents rushed in and surrounded Laurel. Her blood pressure was so high (198), that they manually read it in disbelief. They immediately gave her an ultrasound, x-ray, and EKG. The initial tests revealed that there was fluid around Laurel's heart and lungs. A few minutes later, an ER doctor stated that the ultrasound revealed a "possible mass" on her left side abdomen.

Hearing the word "mass" and understanding how serious this situation was, Brad and I felt helpless. Everything at that point accelerated, both in actual time and within ourselves. The team placed Laurel in the ICU for further testing. When we were up in the ICU room, the oncology team came by and let us know that the size, placement, and positioning was characteristic of a pediatric cancer, called Neuroblastoma.

On Tuesday, March 14th, the surgical team biopsied the mass and also took fluid from her hips to check and see if anything had spread to her bones. We received a partial diagnosis, yes this is Neuroblastoma , but it was unlikely it affected her bones. 

On Thursday, March 16th,  we learned that Laurel was officially diagnosed with Neuroblastoma. The cancer is considered Stage IV because in addition to her abdomen tumor, it is present in both femur, hips, and her vertebrate. Less than five percent of her bone marrow cells are affected by cancer at this time.

On Monday March 20th, more testing revealed that the cancer is MIBG positive, categorizing her as High Risk Stage IV Neuroblastoma. This means that the cancer is at its most aggressive and the cells matastasize quickly. 

Laurel finished her first 5 day Chemotherapy treatment on March 22nd. She will have a 3 week resting period and then will begin another treatment. She will receive Chemotherapy by IV every 21 days. 

The treatment plan for this stage of cancer is aggressive and long. We are looking at 2 years of Chemotherapy, Stem Cell Therapy, and Surgery.

So that is all the technical information you need to know. 

Here's what is comforting us at this time:
- Laurel. She has been fighting her sedation, pulling tubes out, punching nurses. This kid is strong as hell.
- Our oncologist is the leading Neuroblastoma expert in the entire world. Seriously, google her: Suzanne Shusterman. She and other oncologists have blazed a path for treatment, and even as aggressive as Laurel's cancer is, there is hope and a path for her/
- Each other, family, and friends. If you're reading this, it is because you are a person that is contacting us and looking for updates and answers. We have such support with all of you and feel all of your love. 

Brad and I ask that everyone refer to these updates on CaringBridge so we can keep the matter private for now. Once she begins responding to the Chemotherapy and we aren't certifiable messes, we will begin to reach out and allow visitation and whatnot. 

Pray for Laurel. Vibe the f*ck out for Laurel. Kick and fight and heal for Laurel. 

Be good to each other and hug your babies hard.

We love you all,
Laurel, Brad, Leah, Veda and Leo

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