Below you will find the answers to some of our most asked questions.

We realize we can't answer everybody's questions here, so if you have further questions about Callen, or questions about childhood leukemia, please let us know.

  • How and when was Callen's diagnosis made? +

    Callen was diagnosed with leukemia on March 13, 2014. We were fortunate in that the diagnosis was made relatively quickly. He had been experiencing some intermittent muscle pains for several weeks, but was completely "normal" and healthy in between. His first fever was early Sunday morning, March 9. We took him to the emergency room where he had a thorough workup, and his fever resolved. There were some minor abnormalities on his bloodwork, but nothing that was specifically revealing for leukemia. Two days later, Callen experienced severe joint pain and his fevers became unrelenting. He was admitted to the hospital. A team of pediatric sub-specialists spent 2 days evaluating him through physical examination, extensive lab work and radiologic studies. Ultimately he had a bone marrow aspirate that was revealing for leukemia. Within a few hours of the diagnosis, we were transferred to an academic medical center with expertise in pediatric leukemia (and other childhood cancers).
  • What is leukemia? +

    Leukemia is a cancer of the bone marrow, which produces both red and white blood cells. When leukemia is present, there is an abnormal overproduction of immature white blood cells (called "blasts"). Only 5% of the cells in normal bone marrow should be blasts. With leukemia, the high number of blasts crowds out the normal cells. This affects production of normal healthy cells, and decreased numbers of red cells, platelets and normal white cells occurs. This leads to anemia, increased bleeding and poor response to infection, respectively. Callen had 2 bone marrow biopsies done, and his samples demonstrated between 39% and 80% blasts. Thus, the diagnosis of leukemia was made.
  • What kind of leukemia does he have? How common is it? +

    Callen has acute lymphoblastic leukemia, or ALL. Acute leukemia is the more common form of childhood leukemia. Approximately 4,200 children in the United States will be diagnosed with leukemia each year, and 75% of them will have ALL. Other forms are AML (acute myeloid leukemia), CML (chronic myeloid leukemia) and JMML (juvenile myelomonocytic leukemia), which are much less common. More adults than children are actually affected by leukemia.
  • What kind of treatment is he getting? +

    Callen was hospitalized for 7 days, during which time he had bone marrow biopsies, spinal taps, intrathecal (into-the-spine) chemotherapy, and chemotherapy through a central line (special IV that goes from a vein in his arm to the right atrium of his heart). He has also had a blood transfusion. He required narcotic medications due to pain from marrow expansion and from painful diagnostic procedures and treatments. Because of his high fevers and low normal white blood cell count, he was treated with antibiotics to help keep infection at bay.
  • How long will his treatment last? +

    Callen is currently in the "induction phase" of his treatment. This is an intensive 29 day regiment that involves multiple chemotherapeutic agents given in various ways - into his spine, into his bloodstream and by mouth. At the end of the month, he will be re-evaluated with another spinal tap, bone marrow biopsy (taken from his hip bone) and blood tests. This will gauge his initial response to treatment. If this initial treatment is successful, he begins the next phase of treatment, "consolidation", followed by "Maintenance". If he has not responded adequately to the induction phase of chemotherapy, he will receive several more weeks of intensive treatment. The entirety of his treatment will span three years. Boys are treated for 6 months longer than girls because cancer cells like to hide in the testicles.
  • Where is he getting his treatment? +

    Callen received his first week of treatment at Virginia Commonwealth University Medical Center (VCU) in Richmond, VA. He returns one to two times weekly to receive more chemotherapy. Additional outpatient visits and hospitalizations are required based on his response and symptoms or complications he develops. He also has a strict medication regiment that is administered at home by Mom and Dad.
  • What kind of side effects does his treatment have? +

    There are many side effects from the leukemia as well as from the treatment. Some are evident immediately, some take days or weeks to occur, and some may not be fully known for years. The biggest side effect we see is fatigue. It takes an incredible amount of energy to perform normal activities, and he must rest frequently. Some medications cause diarrhea or constipation. The steroids make him incredibly hungry and he will gain weight quickly during the first month. The steroids also cause mood changes, most notably irritability. Other side effects range from minor inconveniences to life-threatening reactions and organ / tissue damage.
  • Will he lose his hair? +

    Yes, Callen will lose his hair. This will happen after the induction phase of chemotherapy. When it does, we invite everyone to shave his or her head in support! At least it will be summertime!
  • Is he able to go to school? +

    Not at this time. Unfortunately, while the chemotherapy is working hard to kill the abnormal cancer cells, it also kills the healthy cells that support his immune system. He has very little defense against infection at this time. For the first few months he is in relative isolation, interacting only with the immediate family. If a family member is sick, he or she must remain isolated (yes, this includes Mom and Dad!) because even minor illnesses can be life-threatening to Callen during this time.
  • How are Olivia, Matt, and Julia doing? +

    We could not be more proud of Callen's big brother and sisters. They have been his biggest supporters and cheerleaders. They also are the most impacted because they see firsthand how affected his daily life is by the disease as well as by the treatment. They worry about his future. They help him in any way that he needs, and they have been a source of inspiration and joy for Mom and Dad. They also tease him, tell on him, and treat him like the baby brother that he is.
  • How can I be of help? +

    Our hope is to convey our current needs via this website. This will be a long journey, and the needs for Callen and for the rest of the family will evolve with time. For now, having an army of chefs and errand runners has been life-sustaining and sanity-saving. The consideration and support that Olivia, Julia and Matt have received is essential. We appreciate the outpouring of prayers and love for Callen and for our entire family. We have been uplifted by the incredible community support we have received! Our little guy has managed to mobilize and unite people of all ages, faiths and backgrounds in Virginia, across the country, and even internationally. Amazing!!
  • Can I come to visit? +

    There are times during his treatment that we cannot receive visitors. As his blood counts go up and down in response to treatment, his restrictions will vary. We will look forward to seeing friends and family when able. Unfortunately, if at any time during his treatment you are ill or have been around someone who is ill, or if you are not current with your vaccinations, your visit will have to wait.
  • What happens to the fundraising proceeds? +

    Countless friends, family members and anonymous donors have contributed to the TeamCallen-Superhero Strong fundraiser on line, and have signed up to run the ASK Fun Walk and 5K on April 26, 2014. We are humbled by the overwhelming response, and plan to give back to the local organizations who sustained us as a family during the first days after diagnosis. Very dear to us are the Certified Child Life Specialists at both St. Mary's Hospital and VCUHS, ASK Childhood Cancer Foundation, and Connor's Heroes. These organizations provide critical emotional, educational and financial support to sick children and their loved ones during times of crisis. They uplift and educate not just the patient, but also his/her entire family during one of the most vulnerable and terrifying experiences any family faces. They manage to bring calm during a time of absolute chaos. They ensure that no one fights alone. We will work to sustain these and other valuable community programs because we know that, unfortunately, Callen's is not the last young life to be touched by cancer.
  • 1

FAQ didn't answer your question?

We had lots of questions, and we're sure that you do as well.

Those of us at Team Callen had lots of questions, and we knew that we couldn't answer them all here. But hopefully we got to most of your questions. If you have further questions about childhood leukemia we suggest that you visit any of the links below. If you are Virginia based, ASK and Childhood Cancer Community Consortium have been AMAZING. Just incredibly awesome! The rest are great as well! Thanks for all your support.