Lyra, 3

This is Lyra. She is a beautiful, sassy, and strong 3 year old who was diagnosed with Hydrocephalus.

Her story started when she was 4 months old and we went to her pediatrician for a monthly check up.
Her head size was of the charts! Our Doctor did not seem too worried and stated that some kids just have big heads, however he ordered a CT scan to make sure it wasn’t something else.

We waited until Lyra was asleep and put her in the CT. I was in the room when the pictures were being taken and remember looking at the screen seeing a lot of white material that didn’t look normal.
We waited for the results.
Without saying much our Doctor told us to go to Portland (a 4 hour drive) to see a neurologist and oncologist.

Our heats were so heavy on that drive but our baby seemed to be normal, it was a nightmare.

Lyra got an MRI there and the doctors came in our room while I was holding my little baby girl.
I remember this all so clearly, the neurologist came in and explained that Lyra had a tumor in her right occipital part of her brain.
I did not cry, I nodded my head and told her we will do whatever we can to get this child healthy. Looking back I know I was in shock, screaming and crying on the inside.

It was a 6 hour long surgery. The hardest and longest day of my life.
Lots of family drove and even flew in from out of state to support Lyra and us through this incredibly tough time.

We got our baby girl back stayed in the hospital a few days and the oncologist said she would be contacting us with the results of the tumor.

Our whole family sat around waiting for that phone call to see if the tumor was benign or malignant.
The call came it wasn’t the best of news but it wasn’t the worst.
The cancer was called DIG, desmoplastic infantile ganglioma. A rare cancer found in kids, she went on to explain that if they had gotten all of it out there is only 5% chance of it returning.
We felt relieved to a certain extent but not great, for really our journey was just beginning.

A month later we had a  MRI check up in Portland with the neurologist, so at 5 months old Lyra was diagnosed with Hydrocephalus. The cerebral spinal fluid was collecting in that pocket area where the tumor was and it was clearly putting pressure on her brain.
A shunt was placed.

Things settled down for a few months and then Lyra got sick. Projectile vomited and got really lethargic.

We were back in the hospital. It was hard for the doctors to decide where to put her shunt valve because of her situation, this was not  ventricular Hydrocephalus, in fact her brain is quite the image when you see it on an MRI scan.

Lyra has had a total of 13 brain surgery’s, recently in May of 2017 she had three in a row, that was a really hard month.

I’m happy and relieved to say she is doing well and there are no signs of the cancer returning, and we are grateful for every normal day we have with her.

Before Lyra was born I bought one of those wall murals with a quote to hang above her crib, “Though she be but little she is fierce”.

I had no idea how much she would live up to it.

Tell us about your journey with hydrocephalus!

Hydrocephalus affects each of us differently. Share your story with us! We will feature the amazing individuals in our community on our website and through social media.

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

If you would like to share your story, please email it to: ines@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.

 

 

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