If you’re reading this and you’re a parent of a child who has just been diagnosed with cancer, I wish I could reach out to you through the screen and comfort you. I can imagine your pain. I know my own version of it.
My youngest child was diagnosed with Acute Myeloid Leukemia (AML) in June 2021 when he was just three weeks old. It was a whirlwind of a day that started off pretty unassumingly, yet resulted in an ambulance ride to the emergency department, and hours later being told, “your son has cancer”. Words that shook me to the core and changed my life. Maybe you had a similar experience.
At the time I didn’t know anyone who had been through what we were going through, so no one could relate. I’m hoping to curb that at least a bit for you with this blog – below are a few things that could be helpful to know/do when your child has just been diagnosed, from what I’ve learned from personally having an infant undergoing cancer treatment.
- You are your child’s #1 advocate. At the hospital, there are a lot of staff who are involved in the care of your child, and inevitably they will rotate in and out. Shifts will change, and multiple teams will be involved. There will be different nurses, doctors, techs, and others who are part of the care team at least every 12 hours. The one constant is you. YOU are your child’s #1 advocate. YOU AND YOUR CHILD are the patient, and essentially, the “customer”. As such, you have the right to ask for second opinions, to challenge when you feel something is wrong, to hold the teams accountable, and to have them explain to you everything that is happening. You have the right to know what is going on, and it’s in everyone’s best interest that you are well-informed and well-equipped to understand what is happening to your child and to help the medical teams do their job: to save your child. Whether you speak the language the medical staff is speaking or not, this is your role and right. Don’t be shy about getting translation assistance, so you can fully understand what is going on and make the best decisions for your child.
- You are NOT alone. Accept help from others so you can focus on being at the bedside with your child. Reach out to friends, family, and supporting organizations such as the Madelyn James Foundation to get support - emotionally and financially. At Madelyn James, our mission is to help families just like yours, with infants undergoing cancer treatment. We will support you how we can to enable you to be with your child throughout this. There are also many other organizations out there wanting to support you. A social worker at the hospital or another staff member of your medical team could help connect you.
Doctors have varying experience levels. Understanding the dynamic will help you understand the landscape of the medical care you are getting. Here’s an article that can help you see that not all “doctors” are the same: https://www.indeed.com/career-advice/finding-a-job/levels-of-doctor. I say this out of utmost respect, but caution you to be aware that a resident doctor is essentially an intern, who may be in the department for the first time ever, so may not have much – if any at all – experience with patients like your child. This foundational understanding of the hierarchy of doctors will help you make sense of and navigate your medical team.
- Fluid levels in babies are important: Track ins and outs. Babies under 4-6 months only drink breastmilk or formula. They can’t drink water and they can’t eat food. Even when they get past 6 months old, they still can’t talk to let people know how they’re feeling. There is likely a lot of medication being administered to your child. If those are given through a line or port, it’s likely that they are running maintenance (saline) fluid into your child to keep his/her line open so they can administer the medication and/or transfuse blood products. Pay close attention to how much fluid is going into your child and how much is coming out (urination in diapers). This is called “ins and outs”. An imbalance can be a major issue, such as collapsing of the lungs and trouble breathing if too much fluid is going in, but not enough is coming out.
- Sometimes there are treatment options via IV and via oral medication, and you may choose different options depending on the situation. For example, you may opt for oral administration of medication instead of an IV/through the line to limit: 1) how much fluid is going into your child, 2) time that they need to be hooked up by their port/line to an IV bag/syringe pump/etc., and 3) how many times their line is being accessed (to limit chances for contamination). Ask the medical team if there are multiple options when they suggest treatment so you can make the best decision for your child.
- Limit how many times your child has to go under anesthesia as you can. First of all, this needs to be balanced with saving/treating your child as necessary, but my advice is focused on being mindful about how often it happens. As an anecdote: my child had a subdural hematoma (brain bleed) and while the oncology residents sent in an order for my child to get a brain MRI (which would have required him to fast for hours before undergoing general anesthesia), I requested a second opinion from the neurosurgeon. I knew that the neurosurgeon had decades of experience and was very up to speed on my son’s condition. In our situation at the time, it was apparent my son had a hematoma, but was otherwise acting very normally based on evaluations from the neurology team. The neurosurgeon stated that an MRI that day would not change the fact that he would not operate at the time. And if he did decide to operate, he would need to do another MRI anyway, right before operating. If I had complied with the initial order from the residents, and if my son ended up needing surgery in that case, my son would have undergone anesthesia twice instead of just once. In this specific case, the neurosurgeon suggested we did NOT do the MRI because it wouldn’t have changed the course of action at all. It would have just been a “nice to know” data point, and that “nice to know” to him was not worth the risks associated with the MRI process for our baby. All in all, just be careful with how often anesthesia is used in such a young child, to try to limit long term effects if possible.
Do what you need to do to protect your child. You may get a lot of opinions from family and friends about what you should or shouldn’t do. You may get pushback on your decisions and preferences (e.g., whether people need to wear a mask around your child, if you decide you do not want to go to crowded places to limit your exposure, etc.). If those opinions are draining you in a bad way, disregard them and stay focused on your goal: to save your child. It may be very uncomfortable to do, but try. Do what you feel is necessary as your baby’s caretaker, and you don’t need to feel sorry about it. You’re in a fight to save your son or daughter, and that’s of paramount importance.
From one parent to another, I offer my thoughts out of care and connection with you. We are part of a club that no one wants to join, but the least we can do is help and support each other as we can.
With love,
Linnette
Disclaimer: At Madelyn James we strive to understand every perspective of infant cancer and to share stories and advice from other families to enhance equitable treatment and respect for every family and child. This is not medical advice and you should always consult with a trusted, qualified, experienced doctor and team in order to make the best decisions possible for your child. You know your child best.