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Neuroblastoma is a tumor of the primitive nerve cells that may arise in the adrenal glands (which are located at the top of the kidneys) and in a chain of nerve tissue that runs along the spine. Most tumors are in the abdomen. Half of these are in one of the adrenal glands. Tumors can start at more than one site in the same patient.
Neuroblastoma is one of the most common “solid” (non-leukemic) tumors in children. It effects one in 7,000. Almost all children who are effected by Neuroblastoma are under five years of age at the time of diagnosis. 50% are under the age of two.
Normal cells from which Neuroblastoma may develop anywhere from the neck to the pelvis. Since the structures from which Neuroblastoma can arise lie deep in the body, the tumor is often very large by the time of diagnosis. The disease may come to the parent’s attention in the following ways:
1) The expanding tumor is visible (as in the abdomen) or causes pressure on normal neighboring structures. For example: the chest, causing breathing problems, or the pelvis, causing bladder and bowel problems; 2) it interferes with the normal function of the nerve from which it arises, producing, for example, a paralysis of muscle in the eye; 3) production of excessive hormone by the tumor may cause diarrhea and high blood pressure, or 4) widespread disease may appear, for example, in the skin (appearing as bluish bumps) or bone (resulting in pain).
Exploratory surgery of the abdomen or an x-ray of the chest are the most common ways of making a diagnosis. A wide range of tests are performed to determine the extent of the disease so appropriate therapy can be scheduled. This process is known as staging. Then, tests are conducted on blood and urine for substances produced by the tumor to find to what extent these are related to the disease. Servial measurements enable the determination of how much of the Neuroblastoma remains after treatment and whether or not there is a growth present.
For patients with localized disease, surgical removal is often the only form of therapy required. If the disease is extensive, for example, involving both sides of the abdomen, or already widespread, chemotherapy, with or without radiation therapy will be required.
Three-year-old Angela, (her name has been changed to protect her privacy) was a healthy little girl on Canada Day weekend 1999. The family traveled to northern Ontario to visit her great-grandparents. Angela became ill during the visit, but since she had a history of ear infections, her parents weren’t too worried. However, as the weekend progressed Angela’s condition worsened. She was taken to a nearby clinic. The doctor ordered tests at a nearby hospital. He phoned Angela’s parents and asked them to stop by his office. He advised them to take Angela home.
Monday morning the visits to the doctor began. After two weeks of exhaustive tests, blood transfusions and a tense waiting period, doctors ruled out leukemia. The diagnosis: Neuroblastoma. The news was devastating. Angela’s parents were told that there are fewer options for treatment of this type of cancer. Angela had a large tumor in her abdomen and another in her chest. Worse news was to follow. Angela had “stage four” Neuroblastoma, which meant it was full-blown and more difficult to treat.
The world fell apart for Angela’s parents. They describe the first month as a “blur” filled with emotions ranging from fear to anguish. But support from family, friends, neighbor, members of their church and strangers, made the anguish give way to hard determination.
After the initial diagnosis, radical treatment followed. Angela was scheduled for 16 chemotherapy treatments. With these came the vicious side effects. Angela’s beautiful head of long, blond, curly hair had soon totally disappeared.
Angela continued to have regular blood and platelet transfusions. Like every child who has chemotherapy treatments, other side effects brought the family back to the hospital. A fever of 101 degrees Fahrenheit meant being admitted to the hospital if her immune system was low; a small cut on Angela’s finger required a six-day hospital stay. Urinary infections caused her to be admitted to hospital for five days.
Angela handles all this incredibly well. She accepts everything she has gone through. From her first visit to hospital, Angela began helping the nurses do her vital signs and she helps her parents give her nightly needles. She likes to have control over the situation and even when she was terribly sick with pneumonia, she was sitting up in bed, trying to smile.
Angela’s illness has caused a strain on her family but she is the glue that holds them together. Her parents take turns staying with her 24 hours a day while she is in hospital. They also have two other children to care for and they both work. They demonstrate an extraordinary combination of resolve, hope, reality and prayer.
In December, Angela was responding well to her chemotherapy treatments. The chest tumor was completely gone and the one in her abdomen was almost gone. There was still something there. At the time, the doctors told Angela’s parents it could be scar tissue or another form of cancer. They wouldn’t know until she had surgery in January, 2000. However, specific tests showed no signs of Neuroblastoma. The cells were gone.
Angela went into remission after that and seemed to be doing extremely well. Then, in May, one of Ashley’s tests came back with bad results. What is in store for this brave, happy and determined child in the next few weeks? A battery of tests to find out if the Neuroblastoma has returned or if Angela suffers from some other disease.
What can we do to help Angela and her family? Pray for them every day and put Angela in God’s Hands.
Angela is so determined to beat her Neuroblastoma and she has a very positive outlook on life, even though she has suffered so much. She never complains and always tries to smile for everyone she meets.
We should take a lesson from this young girl and instead of griping about the things we do not have, we should be thankful for our blessings. Miracles do happen and I hope and pray that God has a miracle planned for this vivacious and determined child. She is an inspiration to us all.
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