Congenital Brain Tumors

Brain tumors are very rare in babies, especially in newborns.  Malignant brain tumors account for about 3% of tumors found in newborns; of the more than 4,000,000 babies born in the United States each year, about 50 are diagnosed with malignant brain tumors. 

There are many different types of brain tumors, depending on the type of cells affected.  Scarlett has been diagnosed with Glioblastoma Multiforme (GBM), which is a high-grade glioma, Stage IV.  This means that it is a cancer of the glial cells in the brain.  Her tumor was particularly large, about the size of an adult fist when it was discovered by MRI when she was 2 months old.

The prognosis for this type of tumor is historically poor; however, emerging research is finding more and more specialized therapies to treat these young patients. Right now, treatment includes surgery to remove the tumor when possible, followed by extensive chemotherapy.  While radiation is an option in older children and adults, it can have severe effects on a developing infant brain.  Scarlett's treatment is defined right now by a specific study led by doctors at St. Jude Research Hospital (who collaborate with our doctor at Stanford).  The study is called SJYC07, and is specifically for children under 3 with brain tumors.   It includes about 48 weeks of chemotherapy, MRI monitoring and other neurological tests, and will follow us until Scarlett is at least 5 years old.  It was begun in 2007, so long term results are not yet known; however, we have been fortunate enough to find a few kids older that Scarlett who are doing fantastically after following this protocol with GBM.

Meet some of the SJYC07 kids!

While other cancers can spread into the brain, most tumors that originate in the brain and/or spine do not spread past the central nervous system.  The tumor can regrow at any time, but the first six months after surgery are the most dangerous.  Though the original tumor was not enmeshed with brain tissue, new growth could.  It could also spread to the spine. Tumor growth is monitored every other month by MRI.

Diagnosis of brain tumors is very difficult in all age patients, but even more so in infants as they do not tend to show the same symptoms until much later in the tumor's development.  Normal symptoms include headaches, seizures, sleepiness, lethargy, sleep changes, personality changes and physical or developmental changes.  Older children can communicate feeling uncomfortable, but babies cannot.  Babies, however, have fontanels, or openings, in the bones of the skull to allow the large head to be delivered at birth.  When a baby has a brain tumor, these bones continue to spread apart, accommodating the growing tumor and putting less pressure on the brain.  This means that normal symptoms are not always observable until the tumor has progressed much further.

A normal fontanel is flat and soft when a baby is calm and upright.  Because Scarlett's fontanel was bulging, in addition to small bruises on her forehead, her pediatrician ordered a CT scan of her brain.  Without this scan, we may not have known there was a problem until much later.

As parents, a diagnosis like this is very frustrating.  We have been told over and over that there was nothing we did that caused this, and nothing we could have done would have prevented it.  Because it is such a rare condition, there are very few resources for learning more.  Internet searches can be scary, articles or websites  misinformed.  Our best resources have been our doctors and other parents who have been through the same protocol.  We feel that the best thing we can do for her is to get as much information as possible and to make informed decisions about her treatment.

Resources for Families

7 comments:

Beth said...

My son was diagnosed with Medullo at 7 1/2 months. I feel our stories are very very simlar! Prayers to you guys!

Jenn K. said...

My son was dx with Medullo as well, in April of 2010 at 16 months. He is doing well now, and we pray it continues that way! His blog is http://littleprinceyfellow.com. I will keep Scarlett, and all children with cancer, in my prayers! Stay strong!

Colleen Tierney said...

I just read your story through pnf website and I'm crying because my daughter seized the day after she was born. Her initial diagnosis was glioblastoma multiforme. After 3 opinions, it was decided to be a pnet tumor with gbm features. We were told the same thing. She spent 200 days in the hospital before she turned one and after surgery, shunt, chemo and stem cell transplant she is now tumor free. Had her tumor not caused a bleed, she would probably have presented like scarlett. Your daughter is gorgeous and these little girls are strong!!! Her website is catchinguponchloe.com

We will keep your family and beautiful daughter in our prayers!!! Xo Colleen

Diede said...

Moms, I know it will be hard, but you all have to stay strong. Babies don’t have an idea what the concept of pain is, but they understand the concept of love. Your babies will get strength from you. Topics such as these can be hard. Good thing there are now support groups for parents with this kind of concern.

Diede School

Diede said...

You've been through a rough time, and I’m glad to know that your son’s condition is improving. This gives hope to moms like you who also have babies with the same case. I admire those people behind the research. I know how your son is as happy as you are, giving him more hope to continue living a happy life. This is indeed a touching moment for you both.

sandrad said...

I saw all the videos of Scarlett and I cried all the time. My son was born with the same tumor , and if I look at her, I see my son .. This little girl is amazing! is beautiful! and his parents are special as you, could not be otherwise. I embrace you all and ask a lot of love for you.

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