After Lilly's diagnosis our small town rose to the occasion and so did my job. One of her best friends Paige put together a team for the Relay for Life at Redbank Regional High School. Paige raised in one week with her friends at school 4000.00 dollars. These kids are 10 years old.My job told me to stay home with Lilly and they will pay me in full.My friend Maria put dinners together for our family every night.We are now a family of a child with cancer.A the Relay for Life
Lilly was pushed in a wheelchair around the tracks for hours by her friends and her brother Andre and his friends.The day was scortching hot and Lilly has developed a rash around the dressing for her brovaic site. She is itchy but smiling all day.
I have a call in to CHOP because the rash has slowly moved upward toward her face. She is due for chemotherapy in a few days.We are scheduled to go to CHOP but it is an hour an 1/2 away. We recently met Dr. Aaron Weiss at Bristol Myers Squibb Hospital in New Brunswick and are thinking of doing her Ewing's protacol chemotherapy there due to the fact CHOP is so far and I am told these kids get fevers all the time and you have many night in the Emergency Room. You have to bring your child in at 100.5 or above.This is to make sure there is no infection in the central line. This is protocal, a word that will become a mainstay of my vocabulary.
They put Lilly on Benedryl and Atarax for the rash.
The day was so much fun for Lilly and she even got a SURVIVOR MEDAL even though we were just diagnosed a bit over a week ago. As I look around to all the survivors I know in my heart my daughter will becoming back next year as a true testament of survival of this cancer.I silently pray lots of Hail Marys.I have taken to going in my yard in the morning and praying to St.Anne,Gerard and Teresa along with the Blessed Virgin. I am waiting for the flowers to bloom as my sign that I am heard. The flowers bloom daily in my garden.. I feel God there.
Lilly spiked her first fever 2 days before Chemotherapy. I quickly learn the ropes. I also quickly chose to take Lilly to RWJ Bristol Myers Squibb instead of CHOP . Lillys fever is over 101.4 and Dr. Attyeih at CHOP help me make that decision because he knows I am in good hands with Dr. Weiss.He will follow Lilly from CHOP.
Lilly is admitted Sunday night to room 2005 in the Pediatric Hemotology Section Of RWJ. This will become our new home away from home for the next 6 months..
