children under 19 diagnosed with cancer each year
survivors face chronic health condition
families experiencing financial hardship
US childhood cancer survivors
Facts pulled from American Childhood Cancer Organization
Today, Candlelighters celebrates Jordan for his courage and spirit. This is his story.
“On June 19, 2018 our lives changed forever. Our son, Jordan, who was 18 months old at the time, was diagnosed with Acute Lymphoblastic Leukemia.”
“Jordan had never been sick before. No fevers, no sniffles, no unexpected trips to the pediatrician. He was perfect in every way,” remembers Carrie, Jordan’s mom. “Greg and I are both older than the average first time parents, and we often talked with each other about how fortunate we were to have such a healthy child. Never in our wildest dreams did we ever imagine ourselves to be in this situation; our child has cancer.
“Everything happened so quickly. It began when we started to notice some bruising on Jordan’s legs. Within a few days, he woke up from a nap with a fever. This was so out of the ordinary for Jordan, we immediately took him to the pediatrician. We showed his doctor the bruising, and told him about the fever. Jordan was prescribed antibiotics and his doctor told us to keep an eye on the bruising. Should it become worse, we would need to take him to get some lab work done.
“A few days later, Jordan began to develop sores in his mouth. At first, I thought he bit the inside of his cheek. When I noticed the second one, along with small red dots (Petechiae) on his face, I thought he was having some sort of allergic reaction to the antibiotics. We brought him back to the pediatrician. He sent us to get the lab work done that day. The next day he called us with the results. His platelets were critically low, and we’d need to take him immediately to the Emergency Room, he most likely needed a transfusion. He said he was reaching out to the on-call hematologist-oncologist to let him know that we were on our way.
“In my shock, all I could think to myself was, “Did I hear that right? Oncologist?” I couldn’t believe what I was hearing. Surely, Jordan wouldn’t need an oncologist. Our child does not have cancer.
“Fast forward a few hours, and our worst nightmare was realized. After more tests in the ER, Jordan was admitted to the hospital. We were taken to a room upstairs, and it was there we met his oncologist who informed us that he was fairly certain that Jordan had leukemia. He told us that there would be further testing that would need to be done the next day, but when it is confirmed, chemotherapy would begin immediately. This would be the beginning of our new lives.
“The next morning after being admitted, Jordan was placed in a medically induced coma. We were informed that he’d be sedated over the next several days for further testing and treatment. First, he underwent a bone marrow biopsy to confirm the diagnosis. The doctors had his tiny little body connected to multiple IVs, a respirator to help him breathe, and a catheter was placed in the artery in his neck for leukapheresis (the process where they remove his blood and separate the high levels of white blood cells before returning the blood to his body). The first night under sedation he received his first chemotherapy treatment. Later that night, he was having so much difficulty breathing, the nurses had to call his doctor in from home to help regulate the respirator. He was running such a high fever, they had to pad his little body with ice packs. He was receiving so much fluid intravenously, that his body began to swell up, and was becoming less and less recognizable.
“He remained sedated for the next five days. With the chemo and the leukapheresis, his white blood cell count was zero, and his immunity was non-existent. He was neutropenic, and highly susceptible to infections. Greg and I had to wear a gown, gloves and mask just to interact with him.
“It is just the three of us here in Las Vegas, our families live in California. Both Jordan’s grandmothers wanted so badly to visit, and help in any way that they could. The doctors told us that anyone who loves him, should just keep their distance. Greg and I felt so alone and helpless. When we were discharged, his grandmothers came out for a few days, but because of his neutropenia, they were unable to interact with him like they wanted to. Not only did he feel weak, tired and sick from the chemo, he was prescribed steroids, which made him very irritable and agitated.
“Within a week of being home from the hospital, we were already going to the clinic for his next chemotherapy treatment. It was after his labs came back that we were informed that we’d have to head nd to be expected. None of this felt normal.
“Although the transfusion was an outpatient procedure, he developed an infection the next day and we were back in the ER. This was the start of another 12 day stay. At the end of this stay, Jordan’s PICC line was removed and he underwent a surgery to place a port in his chest. Now he can receive his treatments through his port, and he doesn’t have to have an external line on his arm.
“Since then, our lives have been full of appointments, medications, transfusions and hospital admissions. He goes to the clinic weekly, sometimes four or five times during the week for chemotherapy. Most of his chemotherapy is given intravenously through his port, but we’ve learned that he’s allergic to one critical IV medication. During a routine chemotherapy appointment, Jordan went into anaphylactic shock after receiving his second dose of PEG-asparaginase. I think every doctor in the clinic was at his side in a heartbeat, doing everything in their power to help him. They were prepared for a situation like that, Greg and I were not. He had tolerated all of the medications so well up to this point. We would have never expected him to have that kind of reaction. We thought we were watching our child die in front of our eyes. Nothing can ever prepare you for that, and I don’t think you ever forget it. The alternate medication is now given through four rounds of six shots in the leg in lieu of the IV treatment.
“Since his diagnosis, we’ve spent 47 days in the hospital, with three ER admissions, and hundreds of clinic appointments already and we have another two-and-a-half years to go.
“There is nothing you can do to prepare to hear the news your child has cancer. Your body just goes on auto-pilot. You really never know how strong you are until you have no other choice. We have to be strong for our son, but at times we can’t help but be weak.
“Jordan is a remarkable little boy. His courage, strength and positive attitude help us navigate this difficult road. We went from being quite the active family who is always out and about, to spending our days at home, the hospital, or the clinic. Throughout all of this, Jordan’s beautiful smile never fades. He manages to capture the hearts of all his nurses. He has become quite popular both at the clinic and the hospital. We just have to remember that leukemia is the only curable form of cancer, we just have to make it to the end of this difficult road. He has been a fighter through all of this, and continues to remind us how lucky we are that God chose us to be his parents.
“Candlelighters has very much been part of our team as we continue on our cancer journey. I am working full time as an elementary school teacher, which comes with its own level of stress. I have a limited amount of sick days available, so I am trying to only take off the time when Jordan is hospitalized. My husband is unable to work as he is Jordan’s full-time caretaker, and the one who takes Jordan to almost all of his appointments. We have a lot of friends and family who want to help as much as they can, but there is honestly not much anyone can do. A big hug and a smile go a long way, though. In a little over six months, we have already received thousands of dollars in medical bills, in addition to many other expenses we’ve also incurred. We expect the same over the next few years.
“Not only does Candlelighters provide much needed financial support to our family, they are a constant reminder that we are not alone in this. Through the fun family activities that are so thoughtfully planned, we have been able to connect with other people who understand the difficult journey we are on. Candlelighters really has been a bright light for us on this dark road. Through them, we are able to maintain our focus, positivity and sanity.
“I try to remind myself every day that even though we are a small family, our love for each other is immeasurable. Some days are definitely easier than others, but we try to stay focused on the future, and find reasons to smile. Our lives have changed, our world has become a little smaller (for now). We are so grateful to each and every person at Candlelighters that has offered their help and support, and are constantly finding ourselves in awe to be in the graces of such amazing people who help to keep our spirits lifted.”
Celebrate Jordan and other courageous Candlelighters children by attending the Evening of Hope Celebration and Honoree Luncheon. Proceeds from both events will benefit Candlelighters programs as the organization continues its longstanding commitment to providing emotional support, quality of life programs and financial assistance for local children and their families affected by childhood cancer. Tickets are on-sale now and may be purchased below.