Her Story

ALISA'S STORY...AS TOLD BY HER MOTHER

Alisa Taylor Danley was born on Monday, June 19, 1995 at 9:14AM. Although she was four weeks early she was a strong, healthy, bouncing "Baby Girl." She came into this world weighing 6 lbs. 2 oz., 191/2 inches long. My husband Rich and I have three other children. Jason is 19, Dawn 15 and Heather 9. Being the youngest of the family she has always had a strong personality, which keeps all of us on our toes. Alisa was always a very healthy and happy child. She loves to sing, dance and act. She is a real entertainer and steals the hearts of everyone she meets.

On Tuesday, November 7, 2000 Alisa's drama began. She was running on the hardwood floor in socks and fell into an awkward split. This fall caused her a lot of pain to her left leg so we took her to the emergency room of our local hospital where she was examined and x-rayed. The x-rays revealed a fractured left femur. The emergency room staff splinted and wrapped her leg and instructed us to keep it stable and go to the orthopedic office in the morning with our x-rays so home we went. In the morning we took Alisa to the doctor to check the x-rays. They then sent us to the hospital to be admitted. After admission, Alisa was taken to the O.R. and placed in a "Hip Spica Cast." This was Alisa's first experience dealing with a hospital. It was very traumatic for her, but she was exceptionally cooperative.

After ten long weeks of staying in bed with the cast, Alisa finally had it removed. We were all so happy for her. But the bad news was that Alisa still could not walk. I inquired about getting her some physical therapy, but the ortho group insisted it wasn't necessary. Rich carried her for the two weeks during Christmas and New Years. She flatly refused to walk. She was scared and upset. My husband and I insisted that Alisa receive physical therapy because I needed to get back to work. Also, my brilliant husband built Alisa a custom walker to assist her in getting around. Between the walker and the physical therapy, Alisa finally started walking.

By March 2001 Alisa was back to her old self, running, playing, dancing and fully active in school. We started to get our lives back to normal. This normality was short lived and lasted until the end of May, at which time Alisa was experiencing pain again but this time in her right leg. She walked with a very bad limp and complained of a lot of pain. Again, we visited our local hospital emergency room where X-rays were taken and their results reported that there was no fracture, but a bad sprain/strain of the quad muscle. Treatment was to rest for one week and notify her pediatrician. The pediatrician was asked to review the x-rays and prescribe any additional treatment. We never received any response or follow-up from the pediatrician. Alisa continued to limp, complain of a lot of pain and at times even cry. This condition lasted another six weeks.

At the end of June our oldest daughter, Dawn, was to compete at a dance competition so we had planned to take a family trip to Orlando, Florida (Disney World). However, with all that was going on with Alisa and my loss of three months income, my husband I decided it would be a financial strain and the trip should be postponed. So I accompanied Dawn to the dance competition alone. Alisa and Heather were very disappointed, but as a consolation, my aunt offered to take them to her shore house for the week. Rich and our son stayed at home and went to work.

When Dawn and I arrived home, we went directly to my aunts to pick up the Alisa and Heather. The moment I saw Alisa's face I knew something was wrong. She looked as if she was pushing her tongue into the inside of her left cheek, but she wasn't. Alisa's cheek became swollen on Sunday, July 1, after she experienced three nosebleeds. No signs of cuts or sores were noticed. Alisa swished with warm salt-water soaks all week. There were no complaints of pain, just a swollen mucous membrane.

On Monday, July 9, Alisa's pediatrician diagnosed her as having a clogged solivary gland. The treatment was to augment, warm soaks, and suck on sour candy. I wasn't satisfied with that, but I tried it for three days. On Thursday, July 12, while at my girlfriend's house, she noticed that Alisa's right femur was abnormally swollen and taunt.

Off again we were to another local hospital for evaluation and x-rays of her cheek and again to her right leg. The emergency room physicians offered no opinion. The X-rays showed sinusitis and missing left sinus bone. However, this time the right femur showed an old healed fracture with calcification and a large haze where the femur was swollen. The emergency room referred me to the orthopedic doctor. He viewed films and affirmed a sinus infection, but disregarded my concern for the missing facial bone. Instead, he told me I was over-reacting. I suggested that we should take her to Children's Hospital of Philadelphia (CHOP), but he would not entertain the idea. He said it wasn't necessary. He also compared the films from May of her right femur with those just taken and confirmed that the right femur had been fractured in May. He also added more views were necessary, but seemed to be missed and he sent us for additional x-rays. The doctor looked at the new x-rays and laughed, stating that in 6-8 months - one year at the most, that both legs would be equal. He also stated Alisa is fine and to take her home there is nothing wrong.

On Saturday, July 15, my husband and I decided to gather our x-rays, lab work and Alisa to head to the emergency room of CHOP. We sent our other children with family members and prepared ourselves for a long wait. At 4:00AM we were admitted. to the respiratory floor - 5 East. Alisa was tossed and turned and examined by many resident interns, fellows, physicians and nurses without complaining. Monday night Alisa went through approximately four hours of MRI testing of the brain, abdomen, chest and both legs. Fellow Dr. Charles Bailey came in and discussed Alisa's medical history with us and reassured us they would get her diagnosed.

Tuesday morning we were moving to 3 East - Oncology. I was a complete zombie, just going through the motions. The next few days were heart wrenching, watching our baby go through several CAT scans, x-rays, bone marrow aspirations, drinking contrast, and biopsies of her left cheek and right femur. At this point the team of physicians had a good idea what was going on, but there was one last test - a spinal tap with injection of chemo, which wasn't completely clear at that time. The spinal with sedation only (no anesthesia) was the most devastating test of all.

Friday night, July 21, 2001, was when we were given the diagnosis of Lymphoblastic Lymphoma of Pre-B Cells. This is an aggressive lymphoma of mostly T cells, B cell is rare. About 2/3 of the patients are male, with intensive chemotherapy and long-term, disease-free, survival may be attained. On Saturday, July 22, Rich and I, along with Dr. Anne Reilly, explained to Alisa her illness and treatment. Alisa was very receptive and relieved to know what was wrong and how to get better.

A very hard long road was now ahead of us. Alisa was to now begin a two and a half year combination of chemo and radiation She has a double lumen called a Broviac, inserted into her heart for delivery of some chemo drugs and also to draw blood. She has completed Phases I and II so far, with hopeful results. She is currently in Phase III that consists of a spinal tap without anesthesia and injection of chemo in her spine. Then if her blood counts are up enough she is admitted for four or five days for intense chemo administration. Then we try to send her back to school for a few days and return the following Wednesday for blood counts and examination. At the end of each phase Alisa must go through another complete series of testing (as she did in the beginning), to check for improvement.

There are also many unexpected visits for fevers, infections and low blood counts. These visits are very upsetting to Alisa as well as the rest of the family. Alisa is in fear of the unknown, of why she is getting symptoms of sickness, and so are we. Our three other children get looks of fear and despair every time. As parents, it is something you just do not get use to.

Alisa is a super child with a great attitude. Our family and friends surround Alisa with positive aurora. Rich and I pray Alisa through each and every process and treatment. We are constantly by her side giving her hugs, kisses, love, and support. Our church family, Princeton Alliance Church in Plainsboro, New Jersey, has been at our sides continuously, in all aspects. Many visits have been made to both the hospital and our home by the pastors, elders of the church, ministers, children church groups, and tons of friends in the congregation. There is also a fund setup by the Princeton Alliance Church for Alisa and our family.

Friends and family have been a great help and support for all of us. There are so many people helping, in so many different ways. We don't know how to thank everyone enough. Many businesses have donated time, supplies, and monetary donations to help our family survive. We are deeply touched and grateful.

Also, I can't begin to tell you how much the principal, nurse, teachers, secretary, PTA board, parents and even the children of Sayen Elementary School have done to help. It is really very comforting to have so much love around you. As a family, we practice the Christian faith! We are as involved as we can be in our Church at this time. We all pray together as a family. We have total faith in God and thank God for every day we are together. We pray for God's miracle and always remember "There is nothing impossible for our God."

Alisa's Drug Treatment List (So Far)

Danunorubicen I.V.

Cyclophosphamide I.V.

Prednisone P.O.

Vincristine I.V.

L-Asparoginase I.M.

Methotrexate I.T.

Cytarahine I.T.

Mercoptopurine P.O.

Lencovorin

Bactrim P.O.

Senokot P.O.

Mineral Oil P.O.

6TG P.O.

6MP P.O.

Pentamine

Zofran I.V. & P.O.

Arac Sqb-f