Angel's Story
written by mom Rosemary
Angel and her twin sister were born 6 weeks
early. She was only 4 lbs. 6 oz. when she was born and she had problems
gaining weight. At about 3 months old, she started to develop cafe-au-lait spots. We watched as the CALs became more numerous and got larger. She
then started to develop skin fold freckling in the axillary region.
At age 3, we took her to a specialist and that is when the Neurofibromatosis Type 1
(NF 1) diagnosis
was made. At age 5, she had to go through surgery to repair a Pectus Carinatum
which is a deformity of the chest characterized by a protrusion of the
sternum and ribs. She has had speech problems and learning disabilities since she
has started school. This has been quite an ordeal for Angel because she has
been teased by the other children. Angel has suffered from migraine
headaches since she was 4. She has suffered from hearing loss since she was
5. Through school she has struggled with the academics and the socialization
skills because of the teasing.
When she was 13, she started complaining about pain in her knee. The pain was
sharp and made it hard for her to walk. We took her to the doctor who did
x-rays only to find a Plexiform Neurofibroma (tumor) behind her left knee.
At this time, they found out that she had the non-ossifying bone mass and
the tibial nerve had numerous tumors inside it. She was put on medication to
help with the pain and had to go to routine doctor appointments to her
orthopedic specialist and her genetics doctor.
On March 16, 2007, during a routine physical exam by her genetics doctor, a
large, solid mass was found in her left abdominal cavity. The doctors
ordered x-rays, MRI, and ultrasound to aid them in the diagnosis. Then on
March 19th, the diagnosis was confirmed with the tests... it was a tumor. The
doctors scheduled her for surgery on March 26th to remove the tumor. During
surgery, they discovered that the tumor was over 4 inches in diameter and it
was attached to her spine, so they could not remove it.
They did biopsy the tumor and sent it off to be tested so they could
determine whether it was cancer or not.
On April 13, 2007, the doctors brought us into their office and told us that
the tumor was in fact cancer and it was a stage 3. At this time, we were in
shock and completely dismayed. Our daughter Angel is fighting for her life.
When the doctors brought Angel in to tell her about the diagnosis, she just
looked at them and told them she knew it was cancer and that God is going to
help her beat the disease. Angel proceeded in asking the doctors what her
plan of care was going to be.
The doctors had set her up to have a dual mediport placed on April 24th. She was then scheduled to start her chemotherapy on her 16th birthday. She had the port placed and the chemotherapy started right on schedule. The first 2 drugs that they tried, failed at shrinking the tumor. In fact,
the tumor grew by over 40%. This completely disheartened me, but Angel kept
saying "Don't worry Mom, everything will be alright". Angel's weight also
plummeted to 103 lbs. She could not eat because she slept all the time and
food did not interest her.
The doctors are now using a different type of chemotherapy and it seems to
be working on the tumor. She had to have a stem cell harvest done for the
new chemotherapy drugs she is presently on. We have been told that the drugs
will bottom her white cell count out so they wanted her stem cells frozen in
case of an emergency. They told us that she would more than likely need to
be rescued because her white blood cells will completely bottom out.
She has been in and out of the hospital for chemotherapy treatments or for
testing to monitor the tumor. She is so upbeat and refuses to allow the
cancer to take over her life. She has a very strong belief in God and she
looks to him for her strength. She has just recently had to have a nodule on
her thyroid biopsied to determine whether or not it is cancerous. I am proud
of my daughter because she never stays down or feels sorry for herself. She
has her moments of depression and anger but she refuses to
let them overtake her life.
Abilities:
See: Yes.
Hear: Yes, but her hearing is diminished in the right ear and may
need a hearing aid.
Talk: Yes.
Walk: Yes.
Read: Yes.
Use hands: Yes.
Siblings:
stepsister Amber, age 20
stepbrother Bradly, age 19
brother David, age 18
twin sister Annie, age 17
half brother TJ, age 10
stepsister Lillian, age 7
half sister Zoe, age 2
Child's Interests:
Angel loves attending church youth group, soccer, track, movies, music,
drawing and her computer.
Sibling's Interests:
David likes sports, music, computers and movies.
Annie likes band, music, church and computers.
TJ likes cartoons, his four-wheeler and John Deere die-cast.
Lillian likes cartoons, Strawberry Shortcake and Polly Pocket.
Zoe likes cartoons, Elmo and P.J. Funnybunny.
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