Carter Santos

First post: Dec 13, 2018 Latest post: Dec 5, 2019
First and foremost, we want to thank everyone for your love and support during this very difficult time. December 11th is a day our family will never forget. Carter was sick with a fever, I called Jason and shared my gut said something was off. We took him into his pediatrician for what we thought was an ear infection. Carters fever was 104.5 when we got to the office, after a few questions from the doctor I started remembering a few little signs over the last few weeks. A gaunt look in the face when we were taking family pictures the weekend after Thanksgiving, tiny red dots on his ankles a few weeks back, a few headaches in the last month. Jason took him golfing last weekend, which he loves, and after two holes he said he was done and ready to go. The red dots (which are a reflection of insufficient platelets) combined with the high fever seemed to be the red flags for our pediatrician. The Dr. pulled me aside and advised me to take him to the ER, he shared he feared a blood infection or Cancer. In that moment, the world stopped. I asked the Dr to call Jason since I couldn't recall a thing he had just said besides the word Cancer. We were off to pick up Jason and head to the ER. Seeing our boy look so sick and depleted and not knowing the fate of his health was torture. Our fears were confirmed when the ER doctor came in and said the words I will never forget "This is a day your family will never forget, I am sorry to tell you Carter has Leukemia" THE WHOLE WORLD STOPPED. Our sweet gentle giants life is forever going to change. Jason and I stood blank faced and strong to not scare Carter. We asked a few questions and then stood in silence and disbelief. A sweet nurse came to sit with Carter once he fell asleep which allowed Jason and I to step out to cry, hold each other, and then call our family to share the worst news of our life.

Over the next 36 hours he was admitted to Oncology, given a blood transfusion, had a bone marrow aspiration, received 3 platelet transfusions, had a lumbar puncture to test the spinal fluid for cancer cells, and then received another blood transfusion. Our sweet, 5 year old boy was in the middle of the fight of his life. We have had wonderful nurses, we love our Oncologist, the hospital staff is so friendly, and Carter is digging the room service. Today we received the news that his diagnosis is B-Cell Acute Lymphoblastic Leukemia, the good news is it has a 95% survival rate. We were told the great news that the spine fluid tested negative for cancer cells. In all of the overwhelming grief there have been small victories that we have celebrated.

We want to thank our village: our family, friends, Point Loma community, School of the Madeleine community, CCHS community, Saint Augustine community, Thursday Club Community and Aztec family. We are overwhelmed and humbled with the support, thoughts, prayers, and condolences. We would need 20 more kids to fulfill the number of play dates, rides, meals and offers to help and still couldn't keep them all busy. Jason and I value our family and friends as our most cherished blessing. We may not reply to each voicemail, email or text but we want you to know that we cherish ALL of you. You are what make this life so full and we truly believe this will all be part of what brings Carter a full recovery.

We are still learning a lot, all we knew was Leukemia is cancer of the blood. Now it is so much more. This is what we do know. His treatment will be 3.5 years. The first 8 months he will be the most fragile and will be the most intense and the following 3 years will be a slow and steady process. He will not be able to return to Kindergarten, however it is likely he will be able to return to School of the Madeleine for 1st grade. He will be treated with chemo, and he will most like loose his hair. He will have a port in his chest to allow for insertion of medication and blood draws that will stay for the 3.5 years, it will become his new norm.

We hope to use this as a platform to share Carters journey and allow for updates. We want you to know that we are INCREDIBLY grateful for ALL of you and your abundance love and support. It truly feels like a gigantic warm hug with your arms all wrapped around us.


Jason, Nicole, Josie, Payton and Carter Santos

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