Chapter One

Jutona's Chapter

January 10, 2003/August 24, 2012

“Those we love don’t go away,

They walk beside us every day,

Unseen, unheard, but always near,

Still loved, still missed, and very dear.”

Unknown

       Jutona is a beautiful Angel who was born on January 10, 2003. She was born into a family which included her mother, an older brother and older sister. Jutona's birth mother was addicted to methamphetamines and was actively partaking in substances throughout all of her pregnancies. All of the biological siblings demonstrate to varying degrees behaviors associated with drug exposure in utero.

       Jutona's adoptive mother, Pennie, has reported that Jutona's biological mother passed away in 2004 of a brain tumor (glioblastoma multiforme) shortly after giving birth to Jutona's younger sister. Jutona's great great Aunt and great great Uncle also passed away of the same type of brain tumor. The brain tumor that ultimately took Jutona's life is considered to have been a genetic issue.

     Jutona was born addicted to methamphetamines however, the greater challenge that Jutona would face in her short life was perhaps

the genetic issue. Jutona's biological mother passed away while in her

20's of a brain tumor (glioblastoma multiforme) when Jutona was around 11 months old. This same type of brain tumor would also claim Jutona’s life. The brain tumor for both mother and daughter was a rarity in itself considering their ages. *This particular brain tumor usually occurs in people over 50 years of age and rarely in those under 30 years of age. After a courageous battle for about 4 years from her original diagnosis, Jutona also passed away from the effects of the same type brain tumor. She never gave up; she never lost her spark.

       I will always remember the first time that I met Jutona. She had already had treatment for her tumor after the original diagnosis of glioblastoma multiforme which occurred when she was in Kindergarten. Despite this discovery and treatment at such an early age, her smiles lit up the room. Her curiosity was contagious. She was always ready to help others, adults and children, family, friends, and strangers alike. Her desire to blend in and be just like all of the other children was admirable and, I might add on this point, she was very determined. During this first meeting Pennie appeared exhausted however, she was all business and seriously and completely dedicated to making Jutona's life the best it could possibly be.

        To better understand the impact that this tumor had on her life the following is the definition of glioblastoma multiforme according to Columbia Neurosurgery.

"Glioblastoma Multiforme is a malignant tumor of the brain. This is one type of a group of tumors collectively known as astrocytomas - so called because they originate from astrocyte cells -." These tumors are

most aggressive and the most common type of tumor which starts in                

the brain. They are most often found in the cerebrum.

Symptoms associated with Glioblastoma Multiforme were found on webmd.com. Because glioblastomas grow quickly, pressure on the brain usually causes the first symptoms. Depending on where the tumor is, it can cause:

constant headaches

seizures

vomiting

difficulty thinking

mood changes

double or blurred vision

difficulty speaking

       Following Jutona's biological mother's death, a long and tedious custody battle for the four children had ensued. The conflict was between other family members and Pennie, Jutona’s mother’s aunt. Pennie and her husband Jim were ultimately able to adopt all four of the children. Jutona and her three siblings were adopted in November of 2005 by Pennie and Jim. Pennie is sister to Jutona's grandfather. All four of the children in Jutona's family were accepted and adopted into the aunt's already established family. Jutona was two years old at the time of the adoption. Her new family included Pennie and her

husband, two grown children from her husband’s prior marriage, two grown children from Pennie’s prior marriage, and two children from her marriage with her current husband, Jim. Pennie and Jim are now known and referred to as "mom and dad" by all of the children adopted from Jutona's biological mother. (For the rest of this chapter the terms "mom" and "dad" will be used in reference to Jutona's adoptive parents.)

      Jutona was 5 years old and two weeks into her Kindergarten year of public school when her tumor was originally discovered. Her treatment was very aggressive as this type of tumor is difficult to treat and cure. She underwent stem cell treatment therapy to help her young body recover from the more aggressive cancer treatment, as this type of tumor is difficult to treat and cure. She was told how hard this treatment would be and how sick she would be during this treatment. As was usual, Jutona tried to be happy however, the treatment was constant and relentless taking its toll on her small body. She was constantly throwing up, in pain, and in intensive care for three weeks. At one point her heart rate went up to over 200 and her kidneys began to shut down. Angel Jutona did persevere. She did beat the cancer demon this time. Once Jutona had completed this treatment she did get better and her smiles returned, much to her relief and the relief of her family and friends.

       During Jutona's recovery from initial treatment the professionals working with her from the hospital where she was being treated were very concerned for her safety. The school staff, administrators, and classroom teacher were quite concerned as well. Jutona wanted to be just like the other kids and be allowed to do all of the things her peers were able to do. Jutona's mom was very supportive of her being allowed

to live her life as a typical and inquisitive little girl. Her mother supported Jutona's decision to be like all of her friends and had the school lift all of the restrictions in place for Jutona except the universal precautions that were in place to keep all of the students safe. As she recovered from her treatment she was able to attend school in the least restrictive environment possible. She thoroughly enjoyed being with her friends.

       Angel Jutona's effects on those around her was nothing short of amazing whether at school, at home, or out and about in the community. Whenever she was home she brought much joy to the entire family with each member being positively impacted, depending on the relationship they had with Jutona. The home was much calmer and peaceful when Jutona was present. One friend who also had a child undergoing treatment in the hospital at the same time as Jutona's 1st round of treatment, volunteered to help take care of Jutona saying that Jutona's voice was very captivating, soothing, and appreciated. The Pastor of the church where the family were members, said that Jutona was an inspiration to the entire congregation as she was always happy no matter how ill she was.

       It is very difficult for family members and friends to understand and come to terms with the fact that a loved one is experiencing a terminal illness. The changes in physical appearance, behaviors, and mannerisms in the one afflicted are so very hard to accept. Many times family and friends can have the feelings of being inadequate, alone, or lost as they try to deal with watching their loved one suffer. Sometimes helping to care for their loved one during this process is simply more than they are capable of. Watching a child (or anyone) who

is virtually terminally ill can cause the people who are the caretakers

feel inadequate and helpless as they watch their loved one become weaker and weaker.

      When Jutona was originally diagnosed with glioblastoma multiforme, her Grandfather, biological mother's father, went into a significant depression which was understandable as he had watched as his daughter had passed away from the same illness just a few years prior. When Jutona was diagnosed the second time, her grandfather was absolutely devastated. 

      During the course of my interview with Pennie she had stated that she was usually alone with Jutona during hospital stays. Pennie was asked why several of the other members of the family had not come to visit Jutona while she was so very ill and in the hospital. Pennie’s reply was carefully considered in respect to each of the immediate family members. She answered that it seemed Jutona's sisters were really too young to understand the gravity of the situation. Jutona's older brother, who was eleven years old at the time of this second round of treatment and had served as the caretaker for her and all of his younger sisters when their biological mother was alive, appeared to be afraid for her and could not bear to see her sick. Jim also could not bear to see her sick and in the hospital with such a serious illness where he was helpless to ease her pain.

      At each and every turn of Jutona's treatment her mother was there for her. Pennie spent countless days and nights away from the rest of the family so she could be with Jutona wherever she was and for as long as her treatment was given. They were able to spend much time together talking about her illness, treatment and eventually what the outcome would be for Jutona. Pennie is able to recall all of her moments with Jutona be they good, difficult, and sad and retold this

particular story. It appears that the second time that Jutona was diagnosed and the day before she was to undergo surgery, Jutona was told that her tumor had returned. She asked her mom, "Why me and not the other girls?" (referring to her sisters). Her mother told her, "Because you can handle it." Jutona agreed!

       One story that Pennie shared was recalling an occasion when Jutona had come home after her initial treatment. The family had gone out to dinner at a family restaurant. Jutona had lost her hair as a result of her treatment and was wearing a hat. She was amazed by an older couple in the restaurant who kept looking at her. She was not alarmed, she was not afraid, nor was she angry or confused. On her way out of the restaurant as she passed the table where the couple were seated, Jutona simply took off her hat and told them that she had cancer and then walked on. This message was from a child who was 5 years old at the time. She passed no judgment nor did she speak unkind words. Perhaps many of us could learn a lesson in kindness, understanding, and wisdom from this Angel.

      The second time that the tumor was discovered, Jutona was in the Second Grade. This time around she kept up her smiles and positive attitude through all of the treatments provided to her. This time she did not get better. This time Angel Jutona did not go home to her family and all those who loved her so very much. Our very brave Angel Jutona passed away at 9 years old with more wisdom, kindness, and courage than many of us accomplish in a lifetime.

       Throughout all of the multitude of treatments, stays in the hospital, and therapy sessions Jutona maintained her patience with all of her health issues and those who wanted to make her life as comfortable as possible. She wanted to be like a regular kid. She did

not want the over-protectiveness or the comments and looks of pity.

       Angel Jutona led a very courageous battle against cancer as well as with society in order to be able to live her short life as normally as possible. She left behind the gift of wisdom, demonstration of how to be kind to one another, and how understanding others actions can prevent anger and frustration. She showed us how happiness can be found for all of us. Jutona is one very unforgettable Angel!

 * - UCLA.edu -neurosurgery

"Life is full of moments that only you and your angel share.”

Anonymous