Becoming a Medical Mama

A fluffy teddy bear with a red heart-shaped nose is holding a pink paper heart. A stethoscope is placed beside the bear, with the chest piece resting on the surface and the earpieces lying to the side. The background consists of white horizontal wooden panels.

The first couple years of my daughter’s life, she went to daycare. I taught high school social studies, and my husband worked as an architect. Our daughter had the normal daycare illnesses (a new virus every other week it seemed), but other than that our life was fairly “normal.” 

But if I’ve learned anything, it’s that “normal” can turn into horrifying very quickly. This is my story of becoming a medical mama, and it’s one of both heartbreak and hope. If you’re at the beginning of your journey, or even if you’re in the thick of it, stick around for three tips to help you navigate this path.

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Finding Out

One summer morning when my daughter was two years old, we met up with friends at a new playground. Immediately after climbing up for the first time, she fell down three stairs and started scream-crying. I went over and noticed that she didn’t want to walk. My friend saw that her ankle was bruised and swollen, so we headed to an urgent care clinic that had an x-ray machine (hoping to avoid the ER).

My husband met us there. It was incredibly stressful (my child’s first broken bone!), but we adjusted and thought she would heal within weeks (kid’s broken bones heal amazingly fast). She didn’t even need a cast. A couple of days later, she started running a fever. We followed up with the pediatrician, and he thought she picked up an illness in the urgent care.

The fever went away the next day. A few days later, she started running a high fever, so I called the pediatrician. The fever was gone the next day, so they weren’t worried about it. A couple of days later, the fever was back. Back to the pediatrician we went.

She also had a rash, and another child in her Sunday school class had had hand-foot-and-mouth the past Monday, so I thought she had picked that up (again, thanks daycare). Her pediatrician very kindly suggested that we go to the Greenville PEDS ER for a blood draw and urine test.

I asked if they could do that in the office, and he said that it would be easier on my daughter to do it in the ER, since they do that kind of thing every day there.

Looking back on it, I’m sure as soon as he saw the rash (which was actually petechiae), he knew.

Moving to the ER

Once the bloodwork came back in the ER, the doctor came in and asked what we understood from looking at the bloodwork on MyChart. I hesitatingly said “there’s something going on with her kidneys?” 

“Yes, but we also suspect something malignant.”

I couldn’t say anything at that point. My husband asked “what does that mean?” 

She said “we are pretty sure she has cancer.”

Thrown into My Role as a Medical Mama

My husband and I were trying to not cry and freak our daughter out. I hugged her tight to my chest, and silent tears streamed down my face while my husband asked all the questions in a strangled voice. 

“How do you know?”  Her white blood count is elevated.

“What kind?”   We don’t know.

“How can we find out?” She will be admitted for more tests. We are going to work on finding her a room while y’all call somebody to come.

My husband stepped out to call his parents, while my daughter, noticing I was crying, started asking me to name the Bubble Guppies characters (which is how we had tried to calm her down earlier). 

Our families came first thing the next morning. Our pastor and friend Matt came that night. He arrived after we got to a room on the Pediatric oncology floor.

The nurses were so nice and made our daughter so comfortable. One of the pediatric oncologists came and started asking questions about her medical history, especially what had happened recently. Any bleeding lately? Nosebleeds since May….so that is probably when this started brewing.

What do y’all do? What is your life like? Any siblings? Pets? Where do you live? House or apartment? How long have you lived there? Where did you live before? Tell me about your families’ medical history.

Our brains were already blown from the conversation with the ER doctor, so we answered the questions as best we could. 

We were told that she probably had leukemia, and we would find out what type the next day. The doctor also mentioned that there was a slight chance it could be an infection. 

That night we prayed and clung to each other. Our prayers were pretty much “God, help.”

A Diagnosis and Whirlwind After

It turned out to be ALL- Acute Lymphoblastic Leukemia, which we were told is the “best” type to have (with the best outcome). She had a port placed the next day. We were told that we couldn’t go back to the operating room with her, but she would be given anxiety medicine through her arm IV, and wouldn’t know what was going on.

However, that IV clotted right before surgery, so I ended up suiting up in the “bunny suit,” and riding back on the stretcher with her to the operating room. I held her while they put the gas mask on her face to put her to sleep (watching her freak out about the mask, then going limp).

A nurse helped me to the waiting room (I was an emotional wreck–I let myself start crying as soon as she went to sleep). The surgery ended up taking hours longer than expected– turns out her veins go in different directions that most people’s, so she gave the surgeon a challenge.

A Scary Impermanent Diagnosis

We were told she may lose her hair pretty quickly, and she would get nauseous from the chemo. She laid in the hospital and didn’t want to eat much the first couple of days. She had a lumbar puncture during the first week in the hospital (she stayed for 8 days).

We stayed in the room for the procedure and learned what happens during a spinal tap (which was horrifying to watch at first, but now I’ve lost count of how many she’s had, and it’s just routine). The results came back with one potential abnormal cell, so she received the tentative diagnosis of CNS2 (meaning the cancer cells have invaded the cerebral spinal fluid, therefore they were potentially in her brain).

It was like learning she had cancer all over again. This hit us like a brick wall. She had multiple lumbar punctures (thankfully by God’s grace with CLEAR results), and her medical team was able to remove that diagnosis from her chart.

The Rollercoaster After Chemo

My husband was able to work some from the hospital. I called my boss and asked for permission to teach virtually full-time instead of face-to-face. Both of our employers were (and still are) very kind and flexible with us.

After the eight days of initial chemo, she was sent home. We had the same feeling of inadequacy as when we were sent home with a newborn (you trust us to take care of a child with cancer??).

We were flat-out exhausted, but when we got home, I studied her prescriptions and wrote in my planner what needed to be given when (on an half- hourly time block planner).

A week or so later, I took her to a clinic appointment with my parents. After chemo was over, the nurse was de-accessing her port (taking the IV out of her port), and I saw metal INSIDE of her incision. I asked “are you supposed to be able to see metal?” The doctor’s face went blank.

The head of pediatric surgery showed up in about ten minutes with an entourage of residents and other surgeons to inspect her port. They determined that it had not healed correctly, and since it was “open,” it would have to come out. This was late afternoon, and she had been eating throughout the day, so the removal surgery was scheduled for the first thing the next morning. A PICC line could be placed the next week for chemo. That surgery went well, and it was (surprisingly) outpatient.

Navigating Staph

That same night, she started running a fever. The policy is that a fever requires at minimum a 48-hour hospital stay (you have to be fever-free for 24 hours to go home). The port location had become infected with staph.

It took awhile to get her on the right combination of medicines to treat the infection. Thankfully, she didn’t go septic, which is a huge risk, especially for cancer patients (I still couldn’t believe she had cancer at this point in our journey). We were in the hospital for almost a month. 

Meanwhile, though, she still had to receive her chemo as scheduled. Two different surgeries were attempted to place a PICC line (an external IV in her arm), which did not work. Chemo was scheduled for the next day regardless.

Children with leukemia around the world are treated with the same “roadmap,” or plan (varying dosages based on weight). If chemo is given in a regular IV, it will burn up the veins in your arm, so we obviously we were trying to avoid that. 

Panic Starts to Set In

After the second failed attempt, I had a panic attack. Jill, one of the veteran nurses on the floor, snapped me out of it by talking to me and getting me a ginger ale.

That ginger ale with a cup of ice is one of the kindest things someone has ever done for me. 

The next day, chemo day, our daughter was anaesthetized for a broviac placement, and it worked!! When the surgeon came out to talk to us after the surgery, I jumped up and started yelling with joy. She was able to receive chemo through her broviac that night, and used the broviac for over a year! 

During that long hospital stay, we learned how to flush her broviac chest tube (which had to be done daily). Baths and swimming were not allowed. She was only two, so we had to make sure she didn’t start chewing on the line or pull it out of her chest.

The broviac added a whole other layer to this overwhelming life.

You know it’s bad when every surgeon or nurse you meet stops your explanation of the port to broviac transition and says “oh, I’ve heard of this case.” Her doctors often say, “We don’t know how it’s going to affect her. It’s Rachel.”

None of this is what I want to hear about my child. I never thought that I would be a mom of a medical kiddo.

My Transition to Medical Mama

I consider myself a full-time caregiver of a medical kiddo, and also a wife, dog mom, and virtual high school teacher. (We added a dog to our family to cuddle with our daughter to help with her anxiety).

I am currently in therapy working on processing and grieving everything that has happened and dealing with the medical trauma and anxiety. 

My view on what is important in life has changed. How I live my life has changed.

Tips for Newly-Christened Medical Mamas

Whether you find out during pregnancy that your baby may have medical issues, or you are surprised at birth, or a challenge pops up later in your child’s life, the diagnosis still comes as a shock.

I never thought that I would be a medical mama. I pridefully assumed that my children would be healthy, straight-A students of excellence.

Having a child with a diagnosis changes the dynamic of your relationship with your child. It adds a layer of stress between you and your partner. It requires increased communication, logistic planning, and financial responsibility. 

Here are my suggestions for if you find yourself in this position:

1. Make a Medical Binder for Your Child

Having a medical binder for my daughter has made me feel like I have a better grasp of what was going on, and it’s a place outside of my brain to “hold” notes, research, and questions. Here are my recommendations for a medical binder:

  • You can totally DIY this with a 3-ring binder and dividers from Walmart, or you could outsource this by buying a pre-made medical binder from Organize 365* (where all you do is fill in the blanks).
  • My child’s binder begins with her chemotherapy roadmap, because that is usually the first thing providers want to talk about. Then I included a list of medicines (including dosages and time of day taken, and some known side effects that she suffers) and a list of allergies. I also included a family medical history.
  • In the front pocket, I keep sticky notes, to provide space for questions to ask at doctors appointments (I also use a shared Apple note so my husband and grandparents can add their questions).
  • In the next section, I keep the latest evaluations from providers (early interventionist, physical therapist, etc.)
  • Then I have a section for insurance documentation.
  • Finally, I have a section for each specialty provider my daughter sees (endocrinologist, pulmonologist, etc.)
  • I carry this binder to every appointment. Paper documentation is so important! I’ve printed pictures of recent rashes my daughter had to show her doctor when discussing potential food allergies. Before looking at the pictures, the doctor said “well, it’s probably just a chemo rash. That’s a typical side effect of this type of chemo.” After looking at the pictures, and seeing the different ways the rashes presented, he said, “well maybe it is a food allergy,” and prescribed an epi pen to have on hand.

2. Name Your Village and Use Them!

Naming your village and talking about who this village is with your partner is incredibly important. Ask yourselves questions like, Who can you trust to take care of your child? Which of these caregivers could take your child to doctors appointments if needed?

Maybe you ask your mom to watch your child for 2 hours every week so you can have a break. Maybe you can’t drive your child to physical therapy just on Thursday mornings, so you ask your father-in-law to take care of that appointment.

Make sure you write out instructions for caregivers ahead of time. Include information such as:

  • Timing and dosage of medications
  • Appointment schedules
  • Foods and activities that are okay (and those that are off limits)
  • Phone numbers for doctors’ offices (including after-hours numbers)

I also find it helpful to make lists of things and services we could use help with. For example, things could be: diapers, medicine syringes, gloves, sanitizer, and lists of favorite restaurants for gift cards or meals.

Services could include dishes, laundry, cleaning, pet care, etc. This way, when people offer to help, you can just send them the list! You have already made these decisions once, so you don’t have to think it through all over again! It’s also easier for people who want to help to be given a specific list they can choose from.

3. Read Kelly Fradin, MD’s Book, Advanced Parenting

My key takeaway from this Advanced Parenting is to schedule appointments and therapies around sleep needs. Getting enough sleep is crucial both for the medical kiddo AND the parent.

For example, my daughter’s physical therapist wanted to schedule her for 8:00 am appointments. My girl is NOT a morning person, and it takes awhile for her neuropathy medicine to kick in (she can’t feel her feet and hands until the medicine has had time to work), so I insisted on late morning appointments.

Late morning appointments are much smoother for everyone involved. I also avoid nap-time appointments! Protect that sleep at all costs!!

What kinds of questions do YOU have about being a medical mama? Let me know in the comments! You can do this! ❤️❤️

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