Guest Blogger - Laura DeFillippo

What is it like when you find out that your child has a brain tumor?  Sometimes symptoms occur and it's an immediate diagnosis.  Sometimes, families try to find out what's wrong with their child for months, or even years.   A brain tumor isn't usually the first thing that comes to mind when you're baby is sick.  Then, how do you deal with it?  I get told all the time, "I don't know how you do it."  How can we not?  The truth is, that no one gave us a choice.  We are just being mom's to our children.  We are aware that we are on borrowed time.  Every day is a gift.  Our children are a gift, no matter what we have to go through, with them. 

We've known Laura, and her son, Luke, for many years.  He was given just a few months to live, at diagnosis, and here he is, now, 12 years later.  It has been an uphill battle for them.  But, every moment they have with Luke is a blessing, and worth the fight.

 

"How do you do it?"

 

No one ever asked me how I did it when I was the mother of three active little boys. People would smile at me, or say “God Bless You!” They gave us space in the grocery store, and looked the other way if one of my guys was having a melt down in the library.   Moms of girls told me I was lucky to have boys, because “girls are so much more complicated.”   But no one asked me “How do you do it?” Well maybe my Mom asked me this question now and again. And she had raised four kids of her own, for some time as a single Mom. How did she do it?

When along came our fourth boy, our world changed. When we had our fourth child, I was nearly 40. I wasn’t worried about being too old to be a new mother though. In fact I felt confident that I knew what I needed to really enjoy a baby. What new could there be to know?   What new indeed?   When our littlest one was six weeks old, I began to see worrying signs that I couldn’t figure out. Something was not right. I tried to talk with our pediatrician about the unfamiliar and startling things I was seeing. My pediatrician told me that he thought I was overreacting. He thought I was having new mother jitters. With my fourth child? I wanted to believe him, but my mother’s instinct took over. One afternoon Luke turned blue while I was nursing him! I called my husband at work and told him, I was going to the Emergency Room right away, and he was to meet me there.

It turned out that what was scaring me was just as shocking to the doctors and nurses at the ER. I found out that what I had been seeing for a few weeks was seizures! Being at the hospital in a safe place, surrounded by people who could help us, I fell apart. The emergency staff took charge. From our local emergency room, we were sent by ambulance to The Children’s Hospital of Philadelphia. Luke and I didn’t see the outside world again for a week. It was a strange kind of odyssey.

Many tests, and observations, and visits with teams of doctors on that first stay didn’t give us any answers as to what was wrong with our baby. Through the next year, we went back and forth from home to hospital, to doctors offices. We tried to treat his seizures, and get to the source of them. Always, it seemed like we were about two steps behind what was happening to him. At this time, I just knew that whatever it was that was making Luke sick would be figured out, and be fixed so that we could get on with life with four boys.

We had a caring and dedicated neurologist. He stayed with us and spent his time puzzling over what was causing Luke’s seizures. His office set us up with support systems. A peer parent from CHOP, came to our house to visit us. She comforted me, and set us up with early intervention. Luke had many delays at this point. Most troubling to us all, were the continued seizures that numbered up to 25 some days- some days more, some days less.

In the autumn of 2003, after one of Luke’s routine EEGs, our neurologist said he thought he saw something that he wanted to have a surgeon, and an oncologist look at. I remember I thought to my self, “Good, now we can get to the bottom of this business, and fix it.”   This new team of doctors suspected something they called “A highly infiltrative growth on the brain.”   “Ok”, I thought, that sounds good…” God protects us from the too hard sometimes.   They wanted to perform surgery to biopsy the growth.

So in October of 2003, Luke had a brain biopsy. By now I was aware that this was a very serious thing happening. Luke was diagnosed with an inoperable brain tumor called Gliomatosis Cerebri. He also has a condition called Neurofibromatosis Type 1. Our world, as we knew it, and planned it, stopped at the moment of this diagnosis. Luke’s prognosis was not good. There was not hope for cure from this type of tumor. It is considered a highly aggressive type of tumor, that the team thought would take his life fairly quickly. They gave us two months to two years life expectancy in 2003. Even without hope of cure, we were offered a treatment that might slow down the progression of the disease.

After much prayer, we decided to try the treatment.

Now after 12 years, and two treatment protocols, Luke is still with us. He has had a bumpy road to travel. He has spent time in hospital. We visit several doctors at CHOP, and he is well known in some of the departments (MRI, Oncology, Neurology).   But our life with him has been a blessing. We take every day as a gift.

These days, it doesn’t surprise me if someone asks me “How do you do it?” In fact I like to be asked about Luke, and how we do this life one day at a time. One day at a time, and much prayer, love and support from our friends and family is the only way we do it. It has been so good for our hearts to share Luke, and our lives with people we meet. We have had many friends stay by us through this journey. Because of Luke’s circumstances, our paths have crossed with special, gifted people we never would meet otherwise. We have met so many people that we can stand beside too. It’s a gift to be able to understand someone else’s pain when life gives them something very hard.

I guess one of the most poignant lessons and gifts we have been given in our wonderful, terrible journey with Luke is that it’s important to open our hearts to the people that pass through our lives. We need them, and they need us.

 




Jeff Danze
Jeff Danze

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