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This site has been visited 20088 times.Personal Background
Caylee Cepero was born in Florida on September 03, 2000. She was diagnosed and passed the next night from AML on March 08, 2005. We had no warning. I love you Caylee and 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.
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. 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.
My Big Little Inspirations - Through my short life (13 years) I've had many hard times...I've had times when as the doctors said "you'll get through this", you could just see the worry in their eyes as they said the words they feared would become a lie. I have times where I must watch as my little brother jumps on the trampoline with his best friend, laughing and giggling, as my heart aches to know that. I have a disease called Dermatomyositis. It's an auto-immune disease considered by many (including the Arthritis Foundation and MDA) a form of arthritis and muscular dystrophy where my immune system attacks itself and whatever gets in the way, predominately my muscles, skin, and joints. Even before that I had a big heart. Yet despite what many would assume, it was not an advantage. I was teased, and made fun of. I was the kid you would invite to your birthday party because you felt you had to, though most likely on the inside you were wondering what fun I was going to ruin when you snickered at that nerdy boy your mother forced you to invite. I never had a real best friend for long...I had 3...one started school late, and was home schooled from then on, the other moved away a week after starting school late, and the other moved as well. I was always different, and now I'm beginning to learn to embrace it. It's hard. Very hard. But my heart is bigger than my fears and I can't stop helping people. I started my first not-for-profit at 10, and I'm now running it plus another organization type thing and a fundraiser for a child in the UK needing treatment in the US. Plus I've designed and co-run 4+ charity web pages. I feel the need to help others, especially children. Children are beautiful, innocent creations of God and should get to live with the only pains the ones every child experiences, the worse a broken bone after falling off a bike.
I try to keep up with 100+ children through the internet and have found so much hope through them and sense of purpose as well. These children inspire me so much. Caylee's story has touched me so much...I do not know how you do it. I love the way you love her...your promise to her, and the fact you're following through with it, says it all. She must be so very proud of you. I know I am, and I have never met you. I know many people are. You are making a difference for so many children. At times it may not seem like it, but WHEN (NOT if) a CURE is found, you will realize that EVERY PERSON makes a DIFFERENCE, including you and and all the people you and Caylee have inspired. There are so many promising studies out there, and with each dollar of funding we come closer to a cure. And if we can cure cancer, imagine what else we can cure?! Step by step, inspiration by inspiration, one heart at a time, we will be victorious.
I won't take up much more of your time here, but I just want to thank you from the bottom of my heart for all you do. You are a hero and inspiration to many, as is Caylee. So thank you once again and never stop being you!
The best way you can contact me if you ever want to is through my mom's myspace (myspace.com/alexs_life_fight_survival), or at awarenessangels.forumakers.com (soon to be awarenessangels.org)
I would love Caylee's legacy to be a part of Awareness Angels. We keep people updated on ill children, and on the families of "heroes in heaven" and any foundations, organizations/etc and their progress, goals, fundraisers and that sort of thing. You can find forms at the site I listed or myspace.com/awareness_angels
Blessings always,
~'~,~@ Alex - from Alexandra founder of Awareness Angels My Big Little Inspirations - Through my short life (13 years) I've had many hard times...I've had times when as the doctors said "you'll get through this", you could just see the worry in their eyes as they said the words they feared would become a lie. I have times where I must watch as my little brother jumps on the trampoline with his best friend, laughing and giggling, as my heart aches to know that. I have a disease called Dermatomyositis. It's an auto-immune disease considered by many (including the Arthritis Foundation and MDA) a form of arthritis and muscular dystrophy where my immune system attacks itself and whatever gets in the way, predominately my muscles, skin, and joints. Even before that I had a big heart. Yet despite what many would assume, it was not an advantage. I was teased, and made fun of. I was the kid you would invite to your birthday party because you felt you had to, though most likely on the inside you were wondering what fun I was going to ruin when you snickered at that nerdy boy your mother forced you to invite. I never had a real best friend for long...I had 3...one started school late, and was home schooled from then on, the other moved away a week after starting school late, and the other moved as well. I was always different, and now I'm beginning to learn to embrace it. It's hard. Very hard. But my heart is bigger than my fears and I can't stop helping people. I started my first not-for-profit at 10, and I'm now running it plus another organization type thing and a fundraiser for a child in the UK needing treatment in the US. Plus I've designed and co-run 4+ charity web pages. I feel the need to help others, especially children. Children are beautiful, innocent creations of God and should get to live with the only pains the ones every child experiences, the worse a broken bone after falling off a bike.
I try to keep up with 100+ children through the internet and have found so much hope through them and sense of purpose as well. These children inspire me so much. Caylee's story has touched me so much...I do not know how you do it. I love the way you love her...your promise to her, and the fact you're following through with it, says it all. She must be so very proud of you. I know I am, and I have never met you. I know many people are. You are making a difference for so many children. At times it may not seem like it, but WHEN (NOT if) a CURE is found, you will realize that EVERY PERSON makes a DIFFERENCE, including you and and all the people you and Caylee have inspired. There are so many promising studies out there, and with each dollar of funding we come closer to a cure. And if we can cure cancer, imagine what else we can cure?! Step by step, inspiration by inspiration, one heart at a time, we will be victorious.
I won't take up much more of your time here, but I just want to thank you from the bottom of my heart for all you do. You are a hero and inspiration to many, as is Caylee. So thank you once again and never stop being you!
The best way you can contact me if you ever want to is through my mom's myspace (myspace.com/alexs_life_fight_survival), or at awarenessangels.forumakers.com (soon to be awarenessangels.org)
I would love Caylee's legacy to be a part of Awareness Angels. We keep people updated on ill children, and on the families of "heroes in heaven" and any foundations, organizations/etc and their progress, goals, fundraisers and that sort of thing. You can find forms at the site I listed or myspace.com/awareness_angels
Blessings always,
~'~,~@ Alex - from Alexandra founder of Awareness Angels YOUR LITTLE ANGEL - Sorry for your lost. She no longers suffer. She is a beautiful angel now, she can spread her wings and fly. God bless you all and your little angel Caylee. - from ELLEN YOUR LITTLE ANGEL - Sorry for your lost. She no longers suffer. She is a beautiful angel now, she can spread her wings and fly. God bless you all and your little angel Caylee. - from ELLEN small ones hurt the most - my grandmother lost a son at the age of 12...i just wanted to say that i am truyl sorry to hear about this..i hope you are doing fine now....i have to admit there is something special about caylee...im 17 years old male and i havent cried like i just did in years...may God be with her...
Christian love,
dalton - from Dalton Shadia S - I'm so sorry for your loss.When I read this I thought about my little girl who had her spleen taken out at 8 months, and is always sick.I always thank god for protecting her.She is the light of my life and I don't know what i'd do without her. Again i'm very sorry for your loss. rest in peace Caylee.May god always be with you little angel... Samantha - Your daughter has the light of life in her eyes. May you know her heart lives on in you. barb - i dont know you but i want to tell you she is a beautiful little girl and she is watching over you i lost my grandson in jan of this year he was still born his name was austin now they can play togther in heaven Nicola Smerdon - Iam so sorry for your loss. I live in england and a came across this website by mistake. I am so glad I did. I got to see your beautiful girl. I am so truly sorry for your loss. thinking of you all. xxx amber bryan - im so sorry for your loss i cant even begin to imagine what u are goin through, i dont know u but i just wanted to let u know that she is lookin down on u and she will always be with u. god bless you
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. 
Two Foundations have been formed:
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.
Visit our store at www.cafepress.com/cayleeshope or make a donation to www.cayleesheart.org to benefit the Children's Cancer Center.
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