Battle On Baby Boy!

On August 5, 2015, I took Nathan to the pediatrician because he had slept for 16 out of 18 hours. He was so lethargic, I couldn’t wake him to eat. When we saw our pediatrician and she thought we were crazy until she measured his head size. She recommended I have my husband meet me at Nationwide Children’s Hospital so we could have him checked out. As it turns out, he is a truck driver and couldn’t just leave work, so my mom met me there. They did a CT scan and immediately rushed us to critical care.

“Your baby has a large mass in his brain”
“It’s about a quarter of his head size”
“We’re fairly sure it’s cancer, but we’ll have to do surgery to know for sure and to try to remove it”
“We’re just waiting for the neurosurgeon to get here”

Neurosurgeon? For my 11 month old baby? There must be some mistake! This is the wrong room, wrong family, wrong kid. As it turns out, it wasn’t the wrong anything. My sweet baby had such a large tumor that made it difficult for the doctors to understand why he was sitting up, self feeding, cruising furniture, but he was! On August 12, 2015, my sweet boy underwent brain surgery 1 of 4. He had a complete gross resection, ventricle repair, shunt placement and shunt revision respectively over the next 6 months.

I think it’s important to take a moment to give some information into our lives prior to finding Nathan’s tumor. In 2010, there was a large mass found in my husband’s brain. We soon found out it was an astrocytoma. He also had a complete gross resection of his tumor in January 2015…  just 7 months prior to Nathan’s tumor resection. It’s important for you to know this, because their cancers were the reason they were tested for a gene mutation called LiFraumeni Syndrome. It is a genetic mutation that makes you more likely to get a second, third and even fourth cancer in your life. Both my husband and son tested positive for this mutation.

We were able to bring little man home for a week prior to starting chemo, which allowed us to have his first birthday at home, but knowing we would be back at Children’s the very next day to start round 1 of the most incredible and scary journey I have ever endured.

Nathan fought like a champ for the 6 months we were in the hospital. Smiling, flirting with nurses and making everyone who met him fall in love! This sweet guy is now 2 years old and 1 year strong from diagnosis. He walks, talks and is the most rotten child I have ever met! We owe everything we have to our amazing team at Children’s. Dr. Sribnick, Dr. Finlay, Suzi and the 12th floor nurses, docs and PCAs are absolutely amazing!

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http://nchflutter.wpengine.com/wp-content/uploads/2016/09/Carter-3-e1475071204411.jpg

On August 5, 2015, I took Nathan to the pediatrician because he had slept for 16 out of 18 hours. He was so lethargic, I couldn’t wake him to eat. When we saw our pediatrician and she thought we were crazy until she measured his head size. She recommended I have my husband meet me at Nationwide Children’s Hospital so we could have him checked out. As it turns out, he is a truck driver and couldn’t just leave work, so my mom met me there. They did a CT scan and immediately rushed us to critical care.

“Your baby has a large mass in his brain”
“It’s about a quarter of his head size”
“We’re fairly sure it’s cancer, but we’ll have to do surgery to know for sure and to try to remove it”
“We’re just waiting for the neurosurgeon to get here”

Neurosurgeon? For my 11 month old baby? There must be some mistake! This is the wrong room, wrong family, wrong kid. As it turns out, it wasn’t the wrong anything. My sweet baby had such a large tumor that made it difficult for the doctors to understand why he was sitting up, self feeding, cruising furniture, but he was! On August 12, 2015, my sweet boy underwent brain surgery 1 of 4. He had a complete gross resection, ventricle repair, shunt placement and shunt revision respectively over the next 6 months.

I think it’s important to take a moment to give some information into our lives prior to finding Nathan’s tumor. In 2010, there was a large mass found in my husband’s brain. We soon found out it was an astrocytoma. He also had a complete gross resection of his tumor in January 2015…  just 7 months prior to Nathan’s tumor resection. It’s important for you to know this, because their cancers were the reason they were tested for a gene mutation called LiFraumeni Syndrome. It is a genetic mutation that makes you more likely to get a second, third and even fourth cancer in your life. Both my husband and son tested positive for this mutation.

We were able to bring little man home for a week prior to starting chemo, which allowed us to have his first birthday at home, but knowing we would be back at Children’s the very next day to start round 1 of the most incredible and scary journey I have ever endured.

Nathan fought like a champ for the 6 months we were in the hospital. Smiling, flirting with nurses and making everyone who met him fall in love! This sweet guy is now 2 years old and 1 year strong from diagnosis. He walks, talks and is the most rotten child I have ever met! We owe everything we have to our amazing team at Children’s. Dr. Sribnick, Dr. Finlay, Suzi and the 12th floor nurses, docs and PCAs are absolutely amazing!

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Comments

  • Janet Kso

    That is amazing- it is remarkable how babies and toddlers can act perfectly normal one day and be stricken with a life- threatening disease, or condition and we never know it until the diagnosis is made.

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