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Our kids inspire us to fight to defeat DIPG.

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Before her diagnosis, Elle was like every other healthy 4-year-old. She is beautiful, makes us laugh, and is the strongest girl we know. She loves playing with her older sister, Ava (6), and her new baby brother, Mason (11 weeks). Frozen 2 and Trolls World Tour are her favorite movies, and she is always up for a movie night. Elle loves swimming, playing soccer, and golfing in the backyard. She even hit a hole-in-one, which we still talk about today. She is in dance class and loves dancing with her teachers and friends.

On April 19, 2020, just a few weeks after her 4th birthday, her mom, Kristi, and I noticed that Elle was turning her head to the side when she walked. After about a week with no change, we took her to her pediatrician at Children’s Hospital of Philadelphia (CHOP) Primary Care in Newtown. We thought it might be a vision problem and were referred to Tri-County Eye in Southampton where we met with Dr. Sheryl Menacker. She has been amazing throughout this entire process, and we can’t thank her enough for how she has guided us. We went in expecting that Elle would have to start to wear glasses and/or a patch to help her see straight. To our surprise, Dr. Menacker told us that we need to get Elle an MRI immediately. This did not register right away, and we were wondering why we needed an MRI if she just needs glasses or a patch?

We were sent to the Children’s Hospital of Philadelphia to meet with another eye doctor. He agreed with Dr. Menacker, and the next day we went back to the city and got an MRI. By this time, everything seemed to be happening so fast for us. We went from Elle needing some glasses to now having to get an MRI of the brain.

The MRI came back, and it was every parent’s worst nightmare. They had found a very rare tumor on Elle’s brain stem, called diffuse intrinsic pontine glioma, also known as DIPG. As you can imagine, our eyes were glassed over at this point, and we had a difficult time understanding what we were being told. We met with so many doctors, nurses, and social workers that day that we simply couldn’t process what was happening and why. DIPG… what does that even mean? We felt lost. Like every parent, we thought we could fix it: take the tumor out of her. But instead we were told that it is inoperable, the word that we will never forget. Surgery was not an option because of its location. They also said the tumor doesn’t take to chemotherapy and that our only option was radiation.

We had a bit of hope. The tumor itself looked out of the ordinary, according to the doctors, and they suggested to do a biopsy to confirm that it was DIPG and to learn more about its makeup. Up until this point, Elle was still having a very normal day-to-day life. She was still running and playing with her sister and continued to be her very independent 4-year-old self. You wouldn’t know anything was wrong with her except the fact that her head was turned slightly so she could see straight.

Then we had the biopsy. Because of where the tumor is located, directly on the brain stem, this is a high real estate area. The doctor said it would be a quick procedure, about five minutes, and that they were going to take a little piece out. At first he said he was going to go in through the top of her head, but at the last minute he changed his mind and decided to go in through the back of her ear.

This was now a string of almost eight straight days of doctor appointments in the city. At this point, we began struggling to get Elle in the car. Every time she sees Philadelphia now she associates it with doctors, needles, and pain. We were praying that this biopsy would tell us it was not this tumor that they kept saying sorry about. They put Elle under again, and the biopsy was performed. They said it went well, but it didn’t.

The biopsy confirmed it was cancerous and a stage 4 DIPG, a fast-growing, malignant tumor. We were devastated beyond what anyone could ever imagine. We pray that no one else ever has to hear those words. There is no cure for DIPG. It is a terminal illness, and the doctor told us she only has 6-18 months left to live depending on how radiation goes. We were completely heartbroken.

Since the biopsy, Elle has had some major side effects due to the biopsy. Her left side of the body has been extremely weakened. Her left eye has turned in toward her nose. She has little movement with her left arm/hand and a wobbly left leg. When she smiles the left side of her mouth does not go up. A once strong, independent 4-year-old now needs help with her daily activities. She wears two sets of glasses that were given to her by Dr. Menacker to help strengthen the eye muscles. Her spirits are great, but she gets a little frustrated at times due to her weaknesses.

In early July, we had a port surgically installed into Elle’s chest so her doctors can access it before her radiation begins. It was painful for her when she woke up after surgery. This was the first time we saw her in physical pain, and it absolutely broke our hearts. We struggled getting her back home, and they had to administer her with morphine.

On July 9, Elle began six straight weeks of radiation Monday through Friday with the weekends off. She has to be put to sleep every single day before treatment, which means she will need a COVID-19 test three times a week. She has already gone through two COVID-19 tests, and they are performed exactly as they would be on an adult.

Her first day of radiation was a tough day for us, as she had a meltdown as soon as we got out of the car. As you can probably imagine, she struggles going into the buildings, and unfortunately due to COVID-19, they are only allowing one parent in at a time. This makes the process even harder for us to get through, as the other parent must wait in the car for hours. Elle chose Mommy to go in with her for the first time. They had to subdue Elle so that they could get her back for radiation because she was having a tough time calming down. It was the hardest thing to face as a father, letting go of your crying child and not being able to be there for her. Kristi is strong and was able to help her while in the office. I sat in the car thinking of her every minute. Hours felt like days. Wondering how she is doing. She woke up and asked where I was, and we were able to FaceTime each other.

We are currently on our second full week of radiation, and Elle is the strongest girl we know. This is an emotional roller coaster that I don’t even know how to describe. There are good days and tough days, but we know that keeping the faith will always help get you through it. There are days you feel like typing and sharing, and there are days you don’t. I don’t know how else to explain it other than you just get this feeling. I also understand that not everyone who may be going through this out there may be feeling that same feeling and that is OK. Elle is continuing her journey with strength, and we are thankful for some of those small successes along the way.

Written by Elle’s dad, Derek Caruso


What is DIPG?

DIPG is a devastating and aggressive brain tumor typically found in children.

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