‘His eyes would shake back and forth. He started throwing his head back, screaming at the top of his lungs. He had lost so much weight. Something was terribly wrong with my bundle of joy.’

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“On June 29, 2016, we welcomed into the world our sweet and precious baby boy. We named him Myles Kaleb Baughman. He was perfect in every way and we were so excited to start our new life with our sweet new baby. This joy of having a new baby was short lived, though. Around 3 weeks old, I knew something was terribly wrong with my little bundle of joy. It would take him hours to just drink 2 ounces of milk, half of it would just dribble out of his mouth. I also noticed that his eyes would shake back and forth. He started throwing his head back and screaming at the top of his lungs.

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We took Myles to his one month check up on Tuesday, August 2, 2016. The doctors were very concerned and sent us straight to Cincinnati Children’s Hospital. He had lost so much weight, he was now below his birth weight. He was admitted for failure to thrive. We didn’t realize at the time, that this would be where we would spend the next 4 months of our lives. Fighting day in and day out for our precious baby, Myles.

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The second day in the hospital they did an ultrasound on Myles’s head. This revealed he had swelling on his brain. Shortly after, they sent my tiny baby for an MRI of his brain. After 3 hours in the MRI machine, our little son was finally finished and we headed to eat dinner. Our dinner would soon be interrupted, however. 3 doctors and a few nurses came in with news no parents want to hear. They told us we needed to sit down and relax. Nothing could ever have prepared us for what they were about to tell us.

‘Your child has a tumor,’ the doctor said. These are words you’re never prepared to hear, especially talking about your 5-week-old baby. I remember I just sat there, blank. Did they honestly just say my baby, my sweet newborn baby, had a tumor in his brain? Why? Why was this happening? He’s just a baby. My world stopped, everything seemed to be going in slow motion. They wouldn’t tell us where the tumor was located in the brain. They also couldn’t tell us at the time if it was cancer or not.

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Now I’m sitting in the hospital with my 5 weeks old son, who has just been diagnosed with a brain tumor. I’m only 19 years old, a full time college student and working a full time job. I would end up having to quit my job to take care of my sweet baby. I remember just sitting there and trying to rack my brain on what I had done wrong. Why did my baby have to go through this? So many thoughts went through my head after we got the news.

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Once we found out he had a brain tumor, I did what everyone does and started researching. I would search information on tumors in young children. The one that popped up over and over was Diffuse Intrinsic Pontine Glioma or DIPG. If you’ve never heard of DIPG, it’s also known as the ‘worst brain cancer ever.’ A very short version of what I kept seeing was that DIPG is a terminal form of brain cancer and it has a life expectancy of only 9 to 12 months. It slowly robs children of their ability to function before stealing their lives away. The tumor is also inoperable because of its location on the brain stem. I remember praying every day that this wasn’t what my sweet boy had.

A few days later, another MRI was performed on Myles. When he came back to the room he was hardly breathing. I remember his little lifeless body lying there. I can remember thinking to myself how pale he was. It was no time before the doctors rushed him to the ICU, where he would be intubated. My sweet baby wasn’t doing good at all. I was so scared.

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On August 15, 2016, after they got him stable, they biopsied the tumor. The doctors told us how risky the biopsy surgery was going to be because of how young he was. They told us that the brain at that age still had a ‘glaze’ over it, which caused it to be hard for them to see the actual brain. But, even though the risk was great, Myles was a champ and the biopsy was successful!

Two days later, on August 17th, we got the results from the biopsy. DIPG. My baby, my 5-week-old son, has just been diagnosed with a terminal and unforgiving brain cancer. I wanted to run out of the conference room. I couldn’t believe what the doctors had just told me. They told us that Myles was one of the youngest children to ever be diagnosed with DIPG. It’s usually only seen in children ages 5-9.

They gave him just a few weeks to live because of how bad he was doing. He was so swollen, to the point that he was blue. His tongue was so swollen it wouldn’t even stay in his mouth. He also developed a blood clot in his leg, he almost lost his leg because of the blood clot.

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Because of his age, the doctors weren’t really sure how to treat him. They also weren’t sure if he would survive more than a few weeks. They needed to wait until his biopsy spot healed to start treatment. They decided that they would start Myles on Chemotherapy. Chemotherapy typically isn’t used to treat DIPG because it isn’t shown to work. It can’t cross the blood- brain barrier that it needs to cross to reach the tumor. Radiation is the most common treatment for DIPG, but Myles was far too young for it. He received his first chemo treatment on August 22nd, at only 7 weeks old. After just a few rounds of chemotherapy, his tumor was almost half the size it previously was! It was shrinking! His tumor was responding to the treatments. The doctors were shocked.

In October 2016 they were finally able to extubate Myles. He was moved to the regular Hematology/Oncology floor. His swelling had gone down tremendously. During the next few weeks they performed multiple test to try and figure out why he still wasn’t swallowing well. The test results came back that Myles wasn’t using his tongue right. The location of the tumor causes it to be hard for them to be able to function like a normal kid. The brain stem controls a lot of the motor functions. One of them being how to use your tongue. Myles already had a feeding tube, so they continued to give him nutrient through it.

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Myles was stabilizing so they decided they could take his 2 PICC lines out of his arms. After they removed his PICC lines, they placed a central line in his chest. This would make getting chemo treatments and blood draws easier. I would have to flush his line every night. You flush the line with saline and them heparin to make sure no blood clots form in the line.

In early November of 2016, they decided that Myles could go home after almost 4 months in the hospital! Myles got to go home on November 12th, he was still on oxygen and had a feeding tube, but my baby boy was coming home. When he was doing so bad in the hospital, we didn’t know if we would ever see the day where we got to bring him home. It felt amazing having my boy home again, where he belonged.

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A few months went by and Myles was doing amazing! He got off oxygen just 2 months after being home. He also ended up sneezing out his feeding tube in February of 2017, they decided not to put it back in and within a few days he was eating on his own! He was doing amazing!

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During the year of 2017, he received chemo treatments once a month. These treatments would require him to be inpatient for 2-3 days depending on what kinds of chemo he was getting.  He would get the occasionally sickness like any other child, but other than that he was doing amazing! Even though it took him longer to learn how to do stuff than other kids, he was determined and didn’t let the monster in his brain slow him down.

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In December of 2017, Myles completed the 18 rounds of chemotherapy his doctors deemed necessary to treat his tumor. His after-treat scans revealed his tumor was stable, so his doctors felt comfortable giving his body a break and letting him be a ‘normal’ kid for a little while. At this time, they decided to do scans every 2 months because with DIPG once it starts growing, it grows fast.

We did the routine of every 2 months scan and each time the results came in that the tumor was stable. His doctors were shocked the tumor has remained stable, without us doing any form of treatment. A year has now passed and after his last scans, his doctors decided to push his MRIs to every 4 months.

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This year we are planning on going on a BIG trip for Myles’s 3rd birthday, the birthday we weren’t sure he would ever see. We never thought he would see his 1st birthday, let alone his 3rd! We are going to take him to Thomasland in Massachusetts. He LOVES Thomas and we are going to make every memory we can with our sweet boy, as long as he is doing as good as he is! We are planning on taking him in April, right before his next MRI. We are praying the results come back stable, but we don’t want to take any chances. We know what kind of monster we are dealing with. The doctors have already told us when his tumor starts to grow, we will have to start radiation or a different treatment immediately. We want to make every memory we can with our miracle boy.

He is a miracle, our miracle.”

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This story was submitted to Love What Matters by Myles’ parents, Sara Baughman and Nate Cominsky. You can follow Myles’ journey on FacebookSubmit your own story here, and subscribe to our best stories in our free newsletter here.

Read another family’s heartbreaking journey with DIPG:

‘Our doctors have told us to go home and make memories’: Dad’s desperate plea for terminally ill daughter whose cancer treatments stopped working

‘A little boy should not have to say goodbye to his partner in crime’: Terminally ill girl dies after dad’s desperate plea to save brave 4-year-old 

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