^^Angel^^ Celeste Y. - Quilt Finished in 2003

Born: May 17, 1999 Passed: August 3, 2004

Illness: Diffuse Intrinsic Pontine Glioma (inoperable brain tumor), Hydrocephalus

Celeste's Story

written by mom Tamara

The most joyous moment of my life was the moment when Celeste was born. Celeste was my first baby and the feeling of joy that I experienced when she was born was so incredible that it is impossible to describe. I knew from the beginning that Celeste was very, very special and has always been remarkably kind and loving. When she was only 2, she would give flowers to other children at the park. She has always been unbelievably sweet. Celeste and I were extremely close. I was with her each moment of every day. We were inseparable.

Celeste was beginning to show some behavioral changes in January 2002. She had intense fits about getting into her car seat occasionally. It wasn't like her to act this way and we knew that it was strange for such an otherwise agreeable and extremely lovable toddler like Celeste. She would often wake up at night screaming. We were told that this was night terror and normal toddler temper tantrums. We started to put her in bed with us and cuddled with her. We assumed that the occasional tantrums were normal even though they were extreme and out-of-character for our baby.

Our family made a move to Pennsylvania in March 2002. Celeste started to wake up in the middle of the night more frequently in October 2002. Her behavior was erratic when she would wake up but it was dismissed as 'normal' toddler behavior. She was also dealing with the hospitalization and sickness of a very close loved one (my grandfather) so it was partially attributed to stress.

Celeste was diagnosed with a diffuse Pontine Glioma in February 2003. This is a highly malignant brain stem tumor. Two days before she was diagnosed, she painted a picture with an angel in it. She frantically painted this and showed us the angel in the picture. The next day, Celeste began to stumble and seemed dizzy. She had the symptoms of a fever with no fever. We called her doctor and were told to come in first thing in the morning. The next morning, Celeste couldn't walk or stand. She could barely keep her head up. She was able to talk with slurred speech and vomited. She kept telling me that she loved me.

We went to the emergency room and a CT scan was done. The doctor came in and told us that our baby had a brain tumor but that it looked operable. They did an MRI and told us that it was in fact inoperable and seemed to be in the pons of her brain, the part responsible for controlling bodily functions like breathing, swallowing, speech, and motor skills. It was an agonizing wait to speak with the pediatric oncologist, who sadly confirmed the diagnosis.

Celeste underwent shunt surgery at diagnosis to help drain fluid that was accumulating due to the pressure from the tumor. Immediately, she had some relief from the headaches and was able to keep her head up and sit for limited amounts of time. She had a mediport placed for the administration of her medications. Our baby had stitches on her head and chest from these surgeries, was very listless, and was in pain. We were taken to a little room outside of the pediatric intensive care unit and told that our baby would die in 6-12 months (with radiation) and that the average life span after this diagnosis is 9 months.

Celeste was sent home in two days and steroids were admitted to her through the IV three times a day to control swelling. She stayed with her parents and siblings at home while undergoing treatment at the Children's Hospital of Pittsburgh. She endured 6 weeks of radiation therapy... given five days a week with weekends off. She was unable to walk until about two weeks after radiation therapy had ended. During radiation, Celeste had body pains, severe thrush and severe constipation from the steroid's effects on her body. We controlled steroid complaints quite successfully with homeopathic care. She went to physical therapy and regained many of the motor skills she had lost.

Celeste was able to begin music therapy as she continued her radiation treatments. A very important aspect of Celeste's brief life was participating in music therapy. It allowed her to feel like a person and feel the healing effects of sharing her inner strength with others.

When radiation was completed, we were offered to put Celeste on a Gleevac trial for possible tumor regrowth prevention/slowing. She was ineligible due to a brain hemorrhage.

Remarkably, Celeste's spirit remained strong. She is an amazingly strong soul and never gave up the valiant fight against brain cancer. By her actions, no one would know how difficult it was for her to do the simple things most people take for granted.

Celeste was placed on a trial at NIH in the attempts to slow tumor growth post-radiation. Alpha-Interferon 2B was administered to her (injection by mom, given at home, once a week) 3 times. At this point, we were taken off the clinical trial in June for what was disputed as being either tumor regrowth or radiation swelling. We were assured that it was mostly regrowth from our oncologist and were given 2-3 weeks with Celeste. NIH told us that it was most likely swelling that could hopefully be controlled with Decadron.

Celeste was sent on her Make-A-Wish trip immediately because of the time sensitive nature of everything that was going on. Celeste began using Protocel, an alternative treatment for cancer.

After our Make-A-Wish trip to Disney World, another MRI was done as a baseline before further treatment would begin. (We were only offered Chemo as an attempt to slow regrowth.) To our surprise, the tumor shrunk almost to post-radiation size. Celeste was ineligible for Chemo at this point and not considered eligible until the tumor regrew from this point.

Celeste began having headaches in September 2003, days after she began

preschool.

Due to the severity of her headaches, we took her to the ER. Upon arrival, Celeste vomited and screamed from pain. A CT scan was done and it displayed a new hemorrhage. At this point, Celeste had a hemorrhage in two areas of her brain.

We were told that Celeste could die at any moment due to the 'new found' hemorrhage and where it was located in the brain. We tried a homeopathic remedy for hemorrhage. The following MRI showed absolutely no hemorrhage 2 days later.

Our oncologist alerted us that the tumor was regrowing (dismissed swelling because of the time frame) and offered chemo to help stop its progression. NIH told us that it could be swelling, regrowth, necrosis... a lot of mess going on all at once and advised NOT to put Celeste on a clinical trial at that time.

Celeste was put on Temodar by prescription. She was given Temodar orally for 5 days, once a month. Celeste experienced tumor shrinkage.

After this treatment success, the tumor regrew and Celeste was ineligible for further treatment because of another brain bleed.

We accepted hospice care and continued with alternative treatments... stayed positive and kept believing that the miracle of healing would be on earth for Celeste. The sweet angel had a different agenda. She was able to be at home for her last few weeks here on Earth. On August 3rd, 2004, Celeste died peacefully in her mother's arms, surrounded by family and friends.