Advocating for Your Child
- Kerri Paton, 27, was overjoyed to welcome her first child with husband Igor Topas, 28, a little over six years ago. But shortly after Kerri gave birth, her doctor noticed the newborn had pale purple spots all over her body. It wound up being a sign of leukemia, and tragically, she had two different types: acute myeloid leukemia and acute lymphoblastic leukemia.
- Acute myeloid leukemia (AML) starts in the bone marrow and affects myeloid stem cells, which produce red blood cells; acute lymphoblastic leukemia {ALL), which is the most common childhood cancer, also forms in the bone marrow and develops from early forms of lymphocytes, a type of white blood cell. This type of leukemia is also called acute lymphocytic leukemia.
- At SurvivorNet, we always encourage people to advocate for themselves when it comes to cancer and, more generally, healthcare. When it comes to a child, the parent must become the advocate.
- Seeking multiple opinions is one way to make sure you or your child is getting the proper care and attention. You should also try to remember that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes it’s essential to talk with multiple medical professionals.
“Once she was in my arms I just cried. I was so happy,” Kerri recalls of the birth to UK news site yahoo!life.
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“Acute” means that these types can progress rapidly.
Amelia had to begin chemotherapy at just three weeks old. Luckily, after the first round of chemotherapy, Kerri saw that her baby’s lumps and spots were gone, though she still had a long way to go.
Amelia also endured a bone marrow transplant, or stem cell transplant, which is a procedure where healthy cells are transplanted into your blood or bone barrow.
After eight months of treatment, she was declared in remission by her medical team.
An AML Relapse
Six months later after hearing the joyous news of remission, during a routine follow-up, Kerri and Igor tragically learned that their baby girl had relapsed with AML. Igor had been on his way to the appointment when the doctor called Kerri and said she should come in as well.
“I just knew it had come back,” Kerry said.
What Are The Symptoms of Relapse in Acute Myeloid Leukemia (AML)?
In addition to more chemotherapy, Amelia needed another stem cell transplant.
Thankfully, the transplant worked, and Amelia has now been cancer free for five years. Just before Amelia’s recurrence, the Scottish couple had another baby, a son named Oscar, so they’re now a happy and healthy family of four.
“Watching your kid sick — it was horrible,” Kerri said of all they have endured. At six years old, she noted that her daughter is “just so funny” and “fiercely independent. She’s very strong-willed.”
Added Kerri, “Even though she went through cancer, her story doesn’t end there.”
Understanding Acute Myeloid Leukemia (AML)
Acute myeloid leukemia (AML) is a cancer that affects bone marrow, the spongy tissue inside of your bones. It’s a rare cancer overall, but it is the most common type of leukemia in adults. Children rarely get AML.
This disease is caused by DNA damage to the cells in your bone marrow that give rise to blood cells. Red blood cells carry oxygen to tissues, white blood cells fight infections as part of the immune system, and platelets help stop bleeding. Those cells are damaged in AML, and the damage results in an overproduction of unnecessary white blood cells.
Understanding Acute Lymphoblastic Leukemia
Acute lymphoblastic leukemia (ALL) is a type of leukemia where the bone marrow makes too many immature lymphocytes, a type of white blood cell. It is also called acute lymphocytic leukemia, according to the National Cancer Institute.
Dr. Olalekan Oluwole, a hematologist with Vanderbilt University Medical Center, previously spoke with SurvivorNet about ALL’s effect on the body and the type of treatments that work to fight it.
“ALL is a type of cancer that is very aggressive,” Dr. Oluwole told SurvivorNet. “It grows very fast. Within a few weeks, a few months, the person will start to feel very sick. And that’s why we will have to give it an equally aggressive type of treatment to break that cycle.”
All About Acute Lymphoblastic Leukemia
Dr. Oluwole also says the leukemia often resides in the bone marrow, and because it is an abnormal growth, it just keeps dividing.
“It doesn’t follow rules, and it doesn’t stop,” he told SurvivorNet. “Not only that, because this is part of the immune system, the immune system is sorta like the police of the body. So those abnormal cells that have now become cancer, they have the ability to go to many places. They go into the blood, and they often go into the tissue or the lining around the brain.”
Coping with a Child’s Cancer Diagnosis
As parents navigate their young one’s cancer journey, it’s important to remember that children’s bodies may react differently to treatments because their bodies are still growing.
“They may receive more intense treatments…and they may respond differently to drugs that control symptoms in adults,” the National Cancer Institute informs. Be sure to ask a lot of questions.
Remember, you’re not alone — your child’s oncologist and care team are there to guide you and provide information and answers. Oncological social workers can also be a vital resource to help you sort out the financial aspects of cancer treatment, as well as other cancer-related issues. Skilled psychologists and counselors can be accessed to help you maintain good mental health through your child’s cancer journey, to the best of your ability.
Additionally, don’t be afraid to reach out to your support system friends, relatives, etc. for help through this process. No one expects you to handle everything on your own.
Meanwhile, if you’re wondering what you can do to ensure your child is getting the best treatment possible, consider the following recommendations from the National Cancer Institute.
- Build strong partnerships: Communicate openly and honestly with your child’s care team. You want to build a solid relationship with the people treating your child so you feel confident asking any questions and discussing your child’s treatment path.
- Take advantage of the many specialists who can help your child: There are many people who can help you and your child after the diagnosis arrives. Don’t hesitate to ask for specialists to help you and your child learn about their disease, understand how it will be treated and cope with difficult emotions.
- If you get information online, make sure the source is credible: Doing your own research is a great way to advocate for your child, but it’s important you’re looking at reliable sources such as (but not limited to) the National Cancer Institute, Mayo Clinic, Cleveland Clinic, National Comprehensive Cancer Network and American Society of Clinical Oncology, among others. Talk to doctors about what you’re finding and don’t hesitate to get multiple opinions regarding your child’s treatment path.
- Make sure you understand what your child’s health care team tells you: You need to ask for clarification if something about your child’s diagnosis or treatment is confusing.
- Keep your child’s pediatrician updated: Make sure your child’s cancer care team is sending updates to their regular pediatrician.
Advocating for Your Child
At SurvivorNet, we always encourage people to advocate for themselves when it comes to cancer and, more generally, healthcare. When it comes to a child, the parent must become the advocate.
RELATED: The Top Ten Childhood Cancer Symptoms That Can Be Missed
It’s important to speak up about each and every issue that may concern you, no matter how minor, as even minor signs can sometimes clue doctors in on a potential cancer diagnosis. And catching it as early as possible is always ideal, as early detection may help with treatment and outcomes.
When It Comes to Health, It’s Okay to Be a Little Pushy
Seeking multiple opinions is one way to make sure you or your child is getting the proper care and attention. You should also try to remember that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes it’s essential to talk with multiple medical professionals.
“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is,” Dr. Zuri Murell, director of the Cedars-Sinai Colorectal Cancer Center, previously told SurvivorNet. “And I think that that’s totally fair. And me as a health professional that’s what I do for all of my patients.”
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