Alliance for Arli, a group started to support Arliana Weber and her family while “Arli” fights a childhood cancer called Neuroblastoma and create childhood cancer awareness, plans to hold a series of three fundraising events on October 15th 2016.
On the one year anniversary of Arliana “Arli” Weber’s cancer diagnosis, the five-year-old prepares with family and friends for a day of fun fundraising (or fun-raising) events including a wig workshop, a carnival, and a concert:
- From 10 a.m. to 2 p.m., that morning, there will be a wig workshop at Davis High School in Kaysville, Utah. For more details, visit www.facebook.com/events/1157130110974031.
- From noon to 5 p.m. in the afternoon there will be a family-friendly carnival and silent auction at Davis High School in Kaysville, Utah. For more details, visit www.facebook.com/events/1618028725177358.
- The day of fun-raising will end with an evening concert at 7 p.m. in the Davis High School auditorium. Performers include Cori Connors, Peter Breinholt and Nancy Hanson. For more details, visit www.facebook.com/events/239509406450640. The concert is reserved seating. Tickets can be pre-purchased at dhsboxoffice.com/performing-arts.
Annesha Weber, mother of Arliana Weber and creator of Alliance for Arli, states, “They informed us that we could choose whether or not to treat Arliana. There was no choice for us. A life without Arliana is unimaginable,” said Annesha Weber.
About Arliana Weber & Family
Arliana “Arli” Weber, is a cheerful 5-year-old. She thinks blueberries are “bellicious” and prays that “fire ants will turn into butterflies.” She loves to snuggle her baby brother. Arli is fighting High Risk Neuroblastoma – a childhood cancer.
It’s that universal experience of childhood — growing pains. But what if you discovered your child’s leg aches were actually caused by cancer? That’s what happened last year to local Farmington mother, Annesha Weber.
In Texas, just weeks after giving birth to their youngest son, Dean (who spent his first 10 days of life in the NICU) they learned their daughter had Stage IV High Risk Neuroblastoma.
One Year after Diagnosis
After one year, six cycles of chemotherapy, two stem cell transplants, three rounds of immunotherapy, multiple surgeries, countless blood transfusions, and costly medical bills, Arli’s spirits are still high and her family is given new hope by the reduced number of cancerous cells in her body.
Alliance for Arli was created to show a small child mankind’s generosity. As members of the Alliance, we have found ourselves taught by Arli’s courage. As you see childhood cancer through Arli’s eyes, you will see that even the worst days can be made beautiful with kindness.
Since her diagnosis, Arli’s family has been separated for long periods of time. “I have basically seen my husband once every quarter since this began,” said Arli’s mother. Arli is currently receiving treatment at Primary Children’s Hospital in Utah. Meanwhile, Arli’s father continues to work in Texas. Cancer has forced the young family to separate and seek support from family in the area.
Siblings are the unsung victims of childhood cancer. One-year-old Baby Dean is not permitted to stay in the hospital with his mother and sister, Arli. This prompted Arli’s mother to move her youngest children to Utah. They joined Arli’s eldest brother, Cannon, who moved to Utah last year to be with his grandparents. When the unpredictable emergencies surrounding Arli’s care increased, the family had to consider the needs of all their children, resulting in long periods of separation. They plan to remain here, in Utah, with family for the remainder of Arli’s treatment or until reunited with Andrew, who they miss every day.
There is still a long way to go and a lot of love and support needed. They need your help. Join the Alliance! Help the Webers!
What is Neuroblastoma?
Neuroblastoma is a type of cancer that is usually found in children younger than 5. When a child has neuroblastoma, neuroblasts — immature nerve cells — in parts of their body begin to grow out of control. Unlike healthy neuroblasts, which only create new nerve cells when the body needs them, cancerous neuroblasts don’t stop dividing and they don’t stay put. These abnormal cells continue to grow and spread (metastasize) through the child’s body, invading other tissues.
What are Arli’s Neuroblastoma cells doing?
The cancerous cells in Arli’s body most likely began in her abdomen, where they have been found on some of her lymph nodes. Overtime, these cancerous cells traveled through the blood and lymph systems to the bone marrow in her legs and hips. The marrow in our bones is where blood cells are produced. When the cancerous immature nerve cells spread to Arli’s bone marrow, they didn’t start making blood cells, they continued to act like nerve cells. These cancerous nerve cells are crowding out the marrow in in Arli’s hips. This build-up of immature nerve cells is extremely painful.
What is Arli’s diagnosis?
Arli has been diagnosed with Stage 4 High Risk Neuroblastoma. Stage 4 means the cancer is advanced and has spread to other parts of Arli’s body, such as her bone marrow. High Risk, as opposed to low or intermediate risk Neuroblastoma, means the cancer needs to be treated aggressively with chemotherapy, radiation, and newer treatments through clinical trials.
What is Arli’s current phase of treatment?
After one year, six cycles of chemotherapy, two stem cell transplants, and three rounds of immunotherapy, Arli will continue immunotherapy. If Arli’s cancer does not respond to immunotherapy it will be classified as “Relapsed Neuroblastoma.” Relapsed Neuroblastoma means the cancer has not responded or has returned in force following treatment. Arli’s treatment plan will become far more aggressive if her cancer relapses. The survival rate following relapse is poor. Some estimate it is less than 10%.
What is Arli’s prognosis?
Prognosis is a difficult word. It’s impossible to forecast how long any one child with cancer will live or how their lives will be affected. Statistics and estimates look at thousands of children with differing access to health-care and support groups. Survival rates can’t possibly take into account the ever burgeoning wealth of medical knowledge and new treatments. They can’t measure the miracles that come from prayer. So, this is where you come in. Your prayers and your support create the scope of Arli’s prognosis.
How much is this going to cost Arli’s family?
Even with the best insurance coverage, a family struck by childhood cancer will have out-of pocket expenses of about $40,000 per year, not including travel.
How did she get this cancer?
The Mayo Clinic states that Neuroblastoma is caused by a genetic mutation. This does not mean that Arli inherited the cancer. This just means that her genetic expression went haywire and no one, not even the best oncologists know why. According to the Centers for Disease Control, cancer does not discriminate, sparing no ethnic group, socio-economic class or geographic region. Cancer is the leading cause of death by disease in children in the United States (National Cancer Institute). Childhood cancer affects all of us.
Isn’t there funding for stuff like this?
Unfortunately there is very little financial support for those struggling with childhood cancer. To give you an idea of how underfunded aid and research for childhood cancer is, let’s looks at the National Cancer Institute’s (NCI) federal budget. It has been stagnant at $4.6 billion/year for the last decade. Despite being the leading cause of death by disease in children, pediatric cancers combined received less than 4% of that $4.6 billion. Every penny helps.
Links for more info and to help
Alliance for Arli’s website is www.arliana.org
Alliance for Arli’s Facebook page can be found at www.facebook.com/allianceforarli
Alliance for Arli’s gofundme page can be found at www.gofundme.com/helpthewebers
Tax Deductible Donations can be made at https://redbasket.org/1024