Laurel's Fight v. Neuroblastoma
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Our baby, Laurel Pearl Bares, was diagnosed with a rare and aggressive pediatric cancer called Neuroblastoma on March 16, 2017.
How did this happen? Laurel began acting extremely fussy and lost interest in her favorite foods in February 2017. Although she was just learning to walk, she appeared unsteady and clumsy. We voiced our concerns to our pediatrician - multiple times via visits and phone calls, who just assured us it was normal behavior. Call it mother's intuition, it just felt like something was very wrong. Four days after her first birthday on March 6, 2017, we took her for her 1 year checkup. She received vaccinations and was weighed - it was then we learned she was only in the 22% percentile for weight.
As soon as Laurel received her vaccinations, she became very sick, and refused to eat or drink and began throwing up. I rushed her to the ER on March 13, 2017 for what I believed would be for a bag of fluids. Upon seeing Laurel, the doctors asked that we ride via ambulance to Children's Hospital Boston. It was there that the doctor's found her blood pressure to be unusually high. And a mass was discovered in her 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. The tumor in Laurel's abdomen measured the size of a large softball - about 8 cm wide. After it was biopsied, we learned that Laurel had Neuroblastoma. It was advanced as it had spread to her hips and was in 5% of her bone marrow. She was categorized to have MYCN amplified, high risk Stage IV Neuroblastoma.
Since March, Laurel has undergone 5 rounds of high potency Chemotherapy. Each round lasted 21 days and became progressively stronger. Her tumor was resected in June and the surgeon believed he removed almost 99% of the mass.
Sadly, in preparing for the next stage of treatment, Stem Cell Therapy, it was discovered by a nuclear scan on July 14th, 2017, that Laurel's cancer has spread to both hips, her entire spinal column, jaw, and left side of her skull. Our doctor will not proceed with Stem Cell Therapy and explained that chemotherapy can have no effect on 10-15% of high-risk Neuroblastoma cases. It was explained that our future is grim, that the disease has advanced more than expected, and only a few therapies are left for Laurel.
Laurel is considered to have relapsed; however, we will never give up hope that she can be cured.
At this point, we've explored all treatment options and are moving forward with a promising trial called ch.14/18IT Treatment with Irinotecan and Temodar. The chemotherapy/immunotherapy drug combination has been used in trials for about 5 years for kids with relapsed/refractory neuroblastoma. It is not yet approved by the FDA. When ch14.18 attaches to Neuroblastoma cells, the body's immune system is stimulated to attack and kill the Neuroblastoma cells. Laurel will begin this treatment on July 24th.
Because the future remains unknown, we hope this fund with provide some financial padding if we decide to travel to another hospital for more experimental treatment. Brad has used up his earned time working at the hospital and we want to enjoy being with Laurel as much as possible now.
Pray for Laurel. Kick and fight and heal for Laurel.
Be good to each other and hug your babies hard.
Love,
The Bares Family
Please visit this site to read more about Laurel's journey:
Laurel's Caring Bridge Medical Journal
How did this happen? Laurel began acting extremely fussy and lost interest in her favorite foods in February 2017. Although she was just learning to walk, she appeared unsteady and clumsy. We voiced our concerns to our pediatrician - multiple times via visits and phone calls, who just assured us it was normal behavior. Call it mother's intuition, it just felt like something was very wrong. Four days after her first birthday on March 6, 2017, we took her for her 1 year checkup. She received vaccinations and was weighed - it was then we learned she was only in the 22% percentile for weight.
As soon as Laurel received her vaccinations, she became very sick, and refused to eat or drink and began throwing up. I rushed her to the ER on March 13, 2017 for what I believed would be for a bag of fluids. Upon seeing Laurel, the doctors asked that we ride via ambulance to Children's Hospital Boston. It was there that the doctor's found her blood pressure to be unusually high. And a mass was discovered in her 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. The tumor in Laurel's abdomen measured the size of a large softball - about 8 cm wide. After it was biopsied, we learned that Laurel had Neuroblastoma. It was advanced as it had spread to her hips and was in 5% of her bone marrow. She was categorized to have MYCN amplified, high risk Stage IV Neuroblastoma.
Since March, Laurel has undergone 5 rounds of high potency Chemotherapy. Each round lasted 21 days and became progressively stronger. Her tumor was resected in June and the surgeon believed he removed almost 99% of the mass.
Sadly, in preparing for the next stage of treatment, Stem Cell Therapy, it was discovered by a nuclear scan on July 14th, 2017, that Laurel's cancer has spread to both hips, her entire spinal column, jaw, and left side of her skull. Our doctor will not proceed with Stem Cell Therapy and explained that chemotherapy can have no effect on 10-15% of high-risk Neuroblastoma cases. It was explained that our future is grim, that the disease has advanced more than expected, and only a few therapies are left for Laurel.
Laurel is considered to have relapsed; however, we will never give up hope that she can be cured.
At this point, we've explored all treatment options and are moving forward with a promising trial called ch.14/18IT Treatment with Irinotecan and Temodar. The chemotherapy/immunotherapy drug combination has been used in trials for about 5 years for kids with relapsed/refractory neuroblastoma. It is not yet approved by the FDA. When ch14.18 attaches to Neuroblastoma cells, the body's immune system is stimulated to attack and kill the Neuroblastoma cells. Laurel will begin this treatment on July 24th.
Because the future remains unknown, we hope this fund with provide some financial padding if we decide to travel to another hospital for more experimental treatment. Brad has used up his earned time working at the hospital and we want to enjoy being with Laurel as much as possible now.
Pray for Laurel. Kick and fight and heal for Laurel.
Be good to each other and hug your babies hard.
Love,
The Bares Family
Please visit this site to read more about Laurel's journey:
Laurel's Caring Bridge Medical Journal
Organizer
Leah Bares
Organizer
Plymouth, MA
