Occasionally, parents of children with cancer experience surprising and tense situations with clinical care teams.
For Nicole, mother of acute myeloid leukemia survivor Jacob, this meant having honest conversations with Jacob’s doctors and nurses, or pushing back and diligently asking questions to effectively make decisions for his overall health.
When Jacob was going through the thick of chemotherapy and a bone marrow transplant and not feeling up for certain procedures, Nicole navigated ways to get the treatments done while keeping tabs on his emotional health. She also advocated for alternative ways beyond traditional medications to help Jacob’s symptoms.
Because every child’s situation is different, parents advocate for their children in different ways according to their circumstances. But Nicole’s main piece of advice applies to all primary caregivers of children with cancer: Trust your gut.
“The doctor may have the medical answers at times,” she says, “But you know your child best.”
Here are just some of the examples of how Nicole effectively advocated for her son when he was in treatment:
Q: Of all the instances you advocated for Jacob, which is one that you are very glad you pushed for?
A: When Jacob was suffering from graft v. host disease, his skin was affected the most. Jacob was covered in a rash from the neck down (the rash looked worse than what it really was). The doctors gave us a steroid cream which really just maintained the rash.
During one of his visits during this time one of the doctor’s prescribed Jacob to start taking an oral steroid to help the rash go away. However, the side effects of the medication included an acid build up (which would require him to take another medication such as an antacid), rapid heart rate, becoming emotional and impulsive, and developing a moon-shaped face.
I looked at the doctor and asked if the medication was just for a rash. If so, I said it was not worth it.”
So, instead I reached out to our holistic doctor and she advised me to use frankincense oil and lavender oil mixed with coconut on his skin twice a day. She explained that because it is natural, it would take time to notice a difference. After two weeks of doing this, Jacob’s skin started to clear with no side effects!
Q: How did you go about challenging a doctor/nurse on something they’ve said that you didn’t agree with.
A: At one point, Jacob was in ICU due to vena occlusive disease (when the liver reverses the fluid back into the body.)
The doctor ordered an ultrasound to see the fluid volume inside Jacob. On this particular day, Jacob decided he didn’t want to cooperate. He had had enough for the day.
The nurse said they would just medicate him to get it done. I said, “No ma’am you will not medicate him. I will be a parent and calm my son down.” The ultrasound tech then said she was busy and had other patients to tend to.
So, I told her please go and tend to your other patients… Both the nurse and tech were in shock. I asked them to let the poor boy have a break.
They ended up not coming until the next day to do the ultrasound, but Jacob was cooperative.
Q: What empowered you the most to advocate for Jacob?
A: Jacob is an innocent little boy, and it was all I could do for him. I couldn’t take the pain away, I couldn’t take the cancer away. All I could do is be by his side and be there for him.