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Childhood Cancer

What a Difference a Decade Makes

What a Difference a Decade Makes

by | May 11, 2023

May of 2013 brought the last dose of chemo for my daughter, Danielle. Back then it was hard to see or even think about what life would be like ten years down the road. Honestly, I wouldn’t even allow myself to look that far ahead. Danielle was diagnosed with high-risk acute lymphoblastic leukemia in January of 2011. When the genetic testing came back on her leukemia about a month after diagnosis, it was not good news. She had all the bad markers and none of the good ones. I chose to focus on the fact that, one month in, she was responding well to treatment and was technically in remission. We just kept marching on. But it never left my mind that this unfavorable genetic news was lurking in the background. Her treatment had five phases with names…induction, consolidation, interim maintenance, delayed intensification and maintenance. As I lived in this world and watched other families...

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Brain Tumor Network Guides Patients and Empowers Care

Brain Tumor Network Guides Patients and Empowers Care

by | May 1, 2023

A few months ago, Rally Mom Tiffany shared with Rally Foundation the outstanding support their family has been receiving from the Brain Tumor Network (BTN) for her son and Rally Kid, Logan: “BTN has been a wonderful resource for our family. They are responsive, knowledgeable and compassionate.” BTN is the largest brain tumor patient support organization of its kind in the U.S. Since 2014, BTN has provided free navigation services to almost 2,000 patients. BTN pediatric brain tumor navigation program provides age-appropriate services for families with children under the age of 18 whose primary diagnosis is a brain tumor. BTN partners with care teams to meet each individual patient’s goal of care. How BTN Helps Led by Pediatric Neuro-Oncology Nurse Navigator Jenna Tozzi, BA, RN, BTN’s pediatric services include: diagnosis and treatment options education, treatment center identification,...

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What Is A Second Opinion?

What Is A Second Opinion?

by | Apr 26, 2023

Hey Mom and Dad, Let’s chat, Cancer Parent to Cancer Parent, about seeking a second opinion. I’ll be the first to admit I was very nervous when seeking a second opinion. I did not want my child’s team to feel insulted or think that I didn’t trust them. We LOVE our team, and we know beyond a shadow of a doubt that they love our daughter. And guess what? After receiving the second opinion, the first thing our primary doctor said was “Never feel bad about seeking a second opinion.” In the immortal words of artist and rapper Macklemore, let’s talk about “What it is. What it does. What it isn’t.” What it is: A second opinion is defined as an independent professional review and assessment of a patient’s illness. A doctor, who is not currently treating your child, carefully reviews the treatment plan and confirms the diagnosis, offers advice, education, and may suggest alternative treatments....

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What Is CAR-T?

What Is CAR-T?

by | Mar 29, 2023

You may have heard of CAR T-cell therapy, also called CAR T, but what is it? It is an immunotherapy treatment that uses your child’s own immune cells, specifically the T-cells, to fight specific blood cancers. CAR-T can be a frontline treatment or an option if one or more treatments did not work, meaning the cancer is resistant to treatment, or if the cancer returned. Medical professionals do a blood draw to collect your child’s T-cells, a type of white blood cell. Then the T-cells are sent to a specialized lab where they are changed (genetically modified) into individualized CAR T cells with the goal of making them destroyers of the cancer. CAR stands for chimeric antigen receptor and that is what is attached to your child’s T cells and programmed to attack the cancer cells. It takes two to four weeks to make CAR T cells. The CAR T cells are then infused through an IV into your child...

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What Is a Bone Marrow Transplant?

What Is a Bone Marrow Transplant?

by | Mar 7, 2023

You just learned that your child has to have a bone marrow transplant. It sounds ominous. You have a lot of questions. Like, what exactly is bone marrow and what is a bone marrow transplant? Bone marrow is the soft, fatty tissue inside your bones. It creates red and white blood cells, as well as platelets. In addition, bone marrow contains immature blood-forming cells known as hematopoietic stem cells, or HSCs. These stem cells are unspecialized, and they can either remain stem cells or mature into different kinds of blood cells. A bone marrow transplant is a medical procedure that replaces bone marrow that has been damaged or destroyed by disease, infection, or chemotherapy. It involves transplanting healthy blood stem cells into the patient so that they can travel to the patient’s bone marrow where they start producing new blood cells and promote growth of new bone marrow. Healthy...

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What Is a Lumbar Puncture? What is a Spinal Tap?

What Is a Lumbar Puncture? What is a Spinal Tap?

by | Feb 27, 2023

It’s scary enough to have your child diagnosed with cancer. But on top of that you hear all these new words and terms, which can be overwhelming, such as lumbar puncture or spinal tap. A lumbar procedure is the same thing as a spinal tap. It is a commonly performed procedure to diagnose and manage a variety of diseases including cancer. It is an invasive procedure used to collect the cerebral fluid that surrounds the brain and the spinal cord. A lumbar puncture/spinal tap may also be done to measure the pressure of the cerebrospinal fluid or to inject medicine, including chemotherapy, directly into the spinal cord and central nervous system. To prepare your child for a lumbar puncture/spinal tap, tell your child what to expect in the hospital and during the procedure. Ask your child’s healthcare team if you can stay with your child during the procedure, and if it’s OK to bring a...

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Childhood Cancer

What a Difference a Decade Makes

What a Difference a Decade Makes

by | May 11, 2023

May of 2013 brought the last dose of chemo for my daughter, Danielle. Back then it was hard to see or even think about what life would be like ten years down the road. Honestly, I wouldn’t even allow myself to look that far ahead. Danielle was diagnosed with high-risk acute lymphoblastic leukemia in January of 2011. When the genetic testing came back on her leukemia about a month after diagnosis, it was not good news. She had all the bad markers and none of the good ones. I chose to focus on...

read more
Brain Tumor Network Guides Patients and Empowers Care

Brain Tumor Network Guides Patients and Empowers Care

by | May 1, 2023

A few months ago, Rally Mom Tiffany shared with Rally Foundation the outstanding support their family has been receiving from the Brain Tumor Network (BTN) for her son and Rally Kid, Logan: “BTN has been a wonderful resource for our family. They are responsive, knowledgeable and compassionate.” BTN is the largest brain tumor patient support organization of its kind in the U.S. Since 2014, BTN has provided free navigation services to almost 2,000 patients. BTN pediatric brain tumor navigation...

read more
What Is A Second Opinion?

What Is A Second Opinion?

by | Apr 26, 2023

Hey Mom and Dad, Let’s chat, Cancer Parent to Cancer Parent, about seeking a second opinion. I’ll be the first to admit I was very nervous when seeking a second opinion. I did not want my child’s team to feel insulted or think that I didn’t trust them. We LOVE our team, and we know beyond a shadow of a doubt that they love our daughter. And guess what? After receiving the second opinion, the first thing our primary doctor said was “Never feel bad about seeking a second opinion.” In the...

read more
What Is CAR-T?

What Is CAR-T?

by | Mar 29, 2023

You may have heard of CAR T-cell therapy, also called CAR T, but what is it? It is an immunotherapy treatment that uses your child’s own immune cells, specifically the T-cells, to fight specific blood cancers. CAR-T can be a frontline treatment or an option if one or more treatments did not work, meaning the cancer is resistant to treatment, or if the cancer returned. Medical professionals do a blood draw to collect your child’s T-cells, a type of white blood cell. Then the T-cells are sent to...

read more
What Is a Bone Marrow Transplant?

What Is a Bone Marrow Transplant?

by | Mar 7, 2023

You just learned that your child has to have a bone marrow transplant. It sounds ominous. You have a lot of questions. Like, what exactly is bone marrow and what is a bone marrow transplant? Bone marrow is the soft, fatty tissue inside your bones. It creates red and white blood cells, as well as platelets. In addition, bone marrow contains immature blood-forming cells known as hematopoietic stem cells, or HSCs. These stem cells are unspecialized, and they can either remain stem cells or mature...

read more
What Is a Lumbar Puncture? What is a Spinal Tap?

What Is a Lumbar Puncture? What is a Spinal Tap?

by | Feb 27, 2023

It’s scary enough to have your child diagnosed with cancer. But on top of that you hear all these new words and terms, which can be overwhelming, such as lumbar puncture or spinal tap. A lumbar procedure is the same thing as a spinal tap. It is a commonly performed procedure to diagnose and manage a variety of diseases including cancer. It is an invasive procedure used to collect the cerebral fluid that surrounds the brain and the spinal cord. A lumbar puncture/spinal tap may also be done to...

read more

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