Diapers, and wipes, and…tumors?

Brooklyn was born on June 24,2021. She was 7lbs 5.5oz and 19 inches long. Perfection! I had an uncomplicated pregnancy and remained active throughout, eating well etc.

We took her in for her 3 day check up after she was born and she was doing well. Our nurse practitioner was wonderful with her and everything with Brooklyn was on track and normal.

As time went on, my husband Ben and I would look at our sweet baby and watch her develop, smile, and coo. The one thing we noticed was she looked down to her left a lot- like it was her favorite side for some reason. Brooklyn being our first child, we didn’t know any better. At her 8 week appointment August 24, we asked our nurse practitioner about the gaze, and she noticed Brooklyn wasn’t tracking or following items well with her eyes, and there was a fullness in her fontanel. We were referred to vision for evaluation, as well as radiology for an ultrasound.

Brooklyn’s vision exam came back as well as an 8 week old baby’s could- it is very difficult to examine babies! August 27th was our radiology appointment and I was already anxious about the visit. When we went in for the ultrasound,  I asked the technician if she could tell us anything she was looking at and she had said no- I even think the screen was turned away from us. She had told us that because it was a Friday, she was going to put a STAT order for a physician to read the report since it was a Friday. I immediately looked at Ben and knew something was wrong.

Out to the waiting room we went, where we were waiting to hear from the doctor. Instead, our nurse practitioner called me and told me “Megan, I’m so sorry, they found a brain bleed and someone is going to come escort you to the emergency room.”  The worst part about that sentence- “brain bleed”- was that my sister had passed in June of 2019 from an undiagnosed ruptured brain aneurysm three weeks after Ben and I got married, just 17 days after her 30th birthday. My biggest fear came true, something was wrong with Brooklyn’s brain.

They escorted us to the ER and took us back to a room immediately where we were greeted by nurses, Physician Assistants from the neurosurgery department and many more. They told us Brooklyn was going to need an emergency CT scan and she was no longer able to nurse in case she needed an MRI or surgery for which she would need to be intubated. This would begin my pumping journey and the 17 hours I was not allowed to nurse my sweet baby. God bless Kelsey at Movemama for creating my favorite nursing tops. Thanks to her, I was able to double pump, fully covered in the ER with ease.

We were taken for the CT which took about 30 seconds but the wait for the results was agonizing. When the neurosurgery PA came back, he looked at us with such a heavy heart. “I”m so sorry, it’s not a brain bleed”. I called Ben back, who had started to go home to grab an overnight bag. “Ben, its not a brain bleed.” “It’s a tumor isn’t it.” It wasn’t a question, rather a statement. One of denial and disbelief mixed into one. I sobbed as the PA turned the computer around to reveal a softball sized tumor in our baby’s brain.

August 31, 2021, Brooklyn underwent her biopsy. Our neurosurgery staff was and remains to this day an INCREDIBLE group of human beings. Humans first and doctors second. We spent 4 days in the PICU prior to the biopsy and  felt every emotion. I never knew the term “mama bear” could ring so true until you watch your child cry as blood is being drawn from a finger prick instead of a heel poke asking “Have you gotten what you need?”, with a response of “not yet” from the technician and telling him that he was finished and to send someone else for a heel stick later.

On September 2,2021, we went home. September 3,2021, we received her diagnosis of a stage 3 Anaplastic Ependymoma, which is a rare cancerous tumor. It is rare in children Brooklyn’s age, and more rare because it was found in her temporal lobe. This was not something she was born with, its something that grew after she was born is our understanding of it. A cosmic f*ck up. September 6th we went back to the ER because Brooklyn was inconsolable, and wouldn’t eat. Another CT was performed showing central tumor death but that the tumor was growing. We were admitted to the PICU again and Brooklyn had her next surgery where an external drain was inserted to regulate the extra fluid in her brain. September 7, 2021 Brooklyn underwent her third brain surgery to remove the tumor. Thankfully, her surgeons were able to completely remove her tumor in an 8-10 hour surgery. The next step would be chemotherapy.

We were transferred out of the PICU to the oncology floor where Brooklyn underwent a 4th surgery to insert a broviac, which is an external line they can draw labs from and run her chemo through since she wasn’t quite big enough for a port (which she will be getting soon). They also did a lumbar puncture to make sure there were no ependymoma cells in her spinal fluid. Thankfully, that was clean!

We were finally discharged on September 30, 2021. I wore all two of my MMA shirts- and finally decided I needed to invest in more and never looked back.

Being a first time mom, I was shy and afraid someone was going to see me nurse Brooklyn. I was afraid of someone saying something negative to me about breast feeding in public. I had seen Movemama Apparel on instagram before I even got pregnant thought “those shirts are awesome and would make nursing so much easier!” Little did I know that in the freezing hospital, the blush long sleeve shirt would become my best friend.

With every procedure Brooklyn had, there was a time period she was unable to eat. In order to keep my supply up, I was pumping every 2 hours, sitting in a corner of the room, behind a screen so no one would see me. It wasn’t until I hooked up both pumps when I realized I was covered, and with multiple people in and out of your room, modesty was no longer my biggest concern. I now tell everyone about the shirts from MoveMama. If you’re breastfeeding…get one girl!

In December, when Brooklyn had her 3 month post op scan, there was no sign of tumor regrowth! This doesn’t mean we are in the clear yet, but that our treatment plan is progressing in a positive way. We still have several months of chemotherapy and treatments ahead. Friday, March 11, 2022, Brooklyn will undergo her 5th procedure to remove the Braviac and insert a port. She’s given us a right scare, yanking on her broviac a couple of times. She will also have her 6th month post op scan. This is her second one, and the scan anxiety- or “scanxiety” doesn’t go away.

At 7.5 months old, for what this sweet babe has going on, she is doing remarkably well! Smiling, laughing and doing everything she can with PT, OT and Help Me Grow. We are truly blessed to have Brooklyn in our lives. Brooklyn is strong, brave and fierce but most of all loved! She will do chemo until she is about 2 years old and she has the best bald head ever!