Caylee Cepero, 9/3/00, diagnosed & passed the next night from AML on 3/8/05 at age 4. We had no warning. I love you Caylee & my heart is broken.
Caylee was 4 yrs old when she passed and was completely full of life. There was never a bad moment, never a bad memory, except the one where she died. Caylee comes from the word Katherine, meaning -PURE -and she sure was. All of my children had an upper respitory infection and had been to the doctor's the week prior and put on Zithromax.
She was over the cough and on day 7 of the treatment, Her temperature was only 99.1 and the school sent her home. They said she was not feeling well(Thursday March 3, 2005,). She was still acting like a healthy kid. We had been for a field trip to the Fire Station the day before. On Friday, she had begun vomiting.
I thought it was stomach virus. Saturday, she had stopped vomiting, was dry heaving and not keeping anything down, I took her to Healthpoint After Hours Pediatrics. He diagnosed it as a Stomach Virus. I let her sleep Sunday except when she wanted to go to Church, she ate some breakfast, but was tired because of the Promethazine they had given her. Monday morning she looked worse, we took her to her Pediatrician about 9am.
He immediately diagnosed it on sight as Leukemia, Monday, March 7, 2005. We were devastated. He said, "This is not a Death Sentence like it used to be."
We took her to the Children's Hospital and they aspirated blood from her marrow and diagnosed it as ALL with a 80% chance of survival, this was the initial early diagnosis. The next morning the final results came in and it was not ALL, but AML, Acute Myeloid Leukemia and now the prognosis was 40% with Chemo and 65% with a Transplant.
My whole world seemed to end at that moment. The Oncologist gave us her road map and said it would mean 10 days of Chemo and then more treatments lasting 2 1/2 years and then she may relapse and need a bone marrow transplant and could eventually die. With 20 years + of experience, they had never seen or expected anything like this. Her WBC was 283,000 (hyperleukocytosis) and when they started Leukopheresis, a treatment that cleans out all unnecessary white blood cells.
Her count came down momentarily to 190,000 and then went back up to 220,000 with an hour left of the treatment. Her heart rate was now at almost 200, they had to put a ventilator in and they explained that we could lose her. They had to resuscitate her twice, 2 minutes and back on Support.
She was not clotting and all of her organs were failing, she was not stable and having a difficult time breathing, she was now hemoraghing and I was told she probably was not going to make it through the night. I told them to keep trying. I could not fail her. Our priest, Father Rich from St. Catherine's Episcopal Church was there and he said, "The last bit of love you can give her is to let her go."
I knew he was right when the bags of blood they were putting in to stabalize her started coming back out. She was bleeding to death, so we had to make a decision to let her go before she did. The Hematologists said that it would be far worse if that happened. We could not bear to do that to her. So, I told them to disconnect her and asked them to give her to me. She never took another breath after she was disconnected.
I held her for a long time. I touched her little feet and hands and rubbed her tummy that had hurt so much and kissed her over and over again. I told her that I was so sorry that this happened to her and that I loved being her mommy and that I was lucky to have had that opportunity. She died at 8:13 pm on Tuesday, March 8, 2005.
In November, her class made cards for Thanksgiving. Caylee's card said she wanted to thank Papa for taking her fishing, mommy for buying her things and Jesus for giving her TV. The last thing she said to us just a couple of hours before she passed was, "Papa, I want to watch TV."
I want to think that Jesus was standing there telling her whenever she was ready to go home just say it. I think it was her way of saying to us she was ready. She closed her eyes and did not open them or ever speak again. I truly believe she was already gone.
For information on Hyperleukocytosis, (what was happening to Caylee) Click Here - this is when the white blood cell count passes 100,000 quickly.
Two Foundations have been formed, Caylee's Hope Foundation, http://www.cayleeshope.com raising awareness and money for research money for the Leukemia Lymphoma Society for research towards Pediatric Blood Cancers and Diseases and funding for research into causes of Pediatric Cancers and the Caylee's Heart Foundation, www.cayleesheart.org benefiting families through the Children's Cancer Center, who have or have lost a child with cancer; touching the hearts of those touched by childhood cancer.
Her MySpace site is hosted and run by Felicia.. Click Here - Thank you
START A CAYLEE'S HOPE TEAM AND WALK TO STOP LEUKEMIA, LYMPHOMA AND OTHER BLOOD DISEASES.
Make a donation to Caylee's Hope at www.cayleeshope.com and/or walk or start a Caylee's Hope team in your area for the Light tne Night Walk to raise money for the Leukemia Lymphoma Society. Visit the site and find out how. Please send me a tribute message if you will be starting a team, with your email address and city.. I appreciate it tremendously. Click Here Contact the Leukemia Lymphoma Society in your area and tell them you wish to start a team under the Team Caylee's Hope umbrella.. If you cannot walk or cannot become a team captain, please make a donation to Caylee's Hope in support of the Leukemia Lymphoma Society(100%of funds are used for Childhood Cancer Research)
Some of our Teams...
Nominate Caylee for Oprah's Heroes and get her story out there..
Kenny Chesney was kind enough to wear the Caylee's Hope/Caylee's Heart awareness wristband on his left arm at the Tampa show. He is pictured here singing, "Who You'd be today" Thank you Kenny for wearing the wristband, it means a lot to me.
Both foundations are on each one on the opposite side. If you would like a bracelet, please make a donation to Team Caylee's Hope and then email me requesting a bracelet. Thank you for your support! The proceeds benefit the Leukemia Lymphoma Society.
For information on cell mutations and translocations Click Here
For a list of cancers/other diseases and their causes Click Here
For a list of Nationa and State SuperFund Sites Click Here
Vaccines and Other Drugs and Diseases and articles Click Here
Sites AND Videos made by others.. Thank you so much!
Paul Tungol, is a young boy in the Philippines who has Acute Myeloid Leukemia. We have been raising funds for Paul for almost a year and he has undergone treatments of chemo for 4 rounds. He is in remission. This is a very poor country and the average annual salary there is approx. $3200 US Dollars. It is a 100% fatal there because of the lack of funds. Every child deserves the chance Caylee didn't have. Thank you! If you can help this family, please make a donation to the Tungol Family directly - Click Here
Caylee's Tea Party was a great success raising over $2,000 for the Leukemia Lymphoma Society. A british style tea party for all ages. Silent Auction, Tea Cup Exchange and Lots of Great Teas and Goodies Created and Hosted by: Alison Gonzales Sponsored by: Celestial Teas, Biscotti and other great sponsors.
Thinking of you / Tara C. (Friend In Christ )
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Caylee / Tara Xxx (beautiful angel )
You have inspired and touched me so much. I'm so sorry that your life was cut short. It seems unfair that I'm growing up, and your an angel. We would be the same age, you're exactly three weeks and one day younger than me. I wish thi...
just got tears ! / Hayssam Dalank (None)
I really don't know how to describe after this year of the loss of your angle daughter ... i remember that a light a candle on this page from years ago and get back by accident , i really got many tears looking at her video and i feel deep sadness in...
Gone but never forgotten! / Carmen Mehl (Aunt)
Our sweet Caylee eight years have gone by, how we miss you. Everyday that goes by we miss you constantly. We think of you at every family gathering ,there is a constant void. We wonder how big would you be, what grade would you be in. What would you ...