About Us

In January 2021 our youngest, Sammy started complaining of headaches and we noticed that while he was watching tv, his head was slightly turned like he was watching tv out of the corner of his eye. We asked him why he was watching tv like that and he said because if he looks straight forward it made everything looked doubled. We noticed his left eye was slightly bulging as well.

So, we took him to his pediatrician and he said it was a vision issue so he referred us to an eye doctor to get his vision checked. The doctor said that his vision issue could’ve been causing his headaches so he was prescribed glasses.

After a couple days, we weren’t seeing any improvement so we took him to see his pediatrician again. The doctor did some standard tests and found no issues. Our worry grew more and more with us not getting answers as to why our baby was in pain.

Years before, a niece of ours was started experiencing frequent headaches. The doctors found that she had a brain tumor when she was not much older than Sam. Thankfully hers was an operable tumor and was removed. So when Sam started experiencing some of the same symptoms she had I had asked his doctor to send him to have scans done of his brain to rule out a brain tumor and put our minds at ease a little. The doctor refused because he didn’t want to expose him to unnecessary radiation. Our son and niece shared the same pediatrician so I didn’t understand why he was so reluctant to send him for scans as he did for our niece.

The doctor ended up prescribing Sam with some headache medicine. We gave Sam his first dose and he started screaming and crying saying that it was burning his throat. The medicine didn’t ease the pain of his headache at all. We immediately call the doctor to inform him and he said he would send something stronger to pharmacy. I again asked him to please send him for a scan and again he said no. Let’s try this other medicine.

On March 7th during Sam’s 6 birthday party he kept falling and complaining that he was dizzy we called the doctor again, and again he said to see the eye doctor. We were tired of the doctor not listening to our concerns so we decided to take him to Children’s Hospital in St.Louis to get looked at.

Upon arrival the intake nurse took one look at Sam and noticed his eye bulging and immediately ordered an ultrasound of his eye. The ultrasound showed fluid behind his eye which was causing it to bulge.

At this point they weren’t really saying anything and they were focused on getting him in for a CT scan to see what was going on. The CT scan showed his left ventricle on his brain was swollen indicating there was a blockage somewhere in his brain. To relieve the swelling and pain they took it surgery to put a shunt in his head to help drain the fluid from the swelled ventricle and drain into his stomach. Within 24 hours the headaches were minimal.


The doctor then ordered an MRI which showed he had a tumor wrapped around his brain stem and 4 little tumors on his spine. The news was devastating to us. The emotions that occurred were indescribable.

The doctors let us know there were 3 different types of tumors it could be and she was pretty sure which one it was but couldn’t say unless we wanted a biopsy. A biopsy was then ordered to determine what type of tumor it was.

Shortly after his biopsy, Sam started showing signs of weakness on the right side of his body and the left side of his face started to droop as if he had a stroke. Seeing our baby boy go from running, jumping and playing like a normal 6 year old to needing a wheelchair is the hardest thing to see. Eventually after weeks and weeks of physical therapy and specially made leg braces and shoes he was able to get around with a walker.

Finally, the biopsy results were in. On that day our lives were changed forever. His diagnosis was Diffuse Intrinsic Pontine Glioma. This was the worse case diagnosis for Sammy. We were told that this type of tumor was very aggressive and the prognosis was 9-11 months. This was an absolute nightmare. We felt so lost and broken knowing that there was nothing we could do to help our boy.

The next step was 60 radiation treatments Monday through Friday. The radiation was done on his brain and on his spine to hopefully shrink all the tumors. He had to be put under anesthesia every day while getting the treatment. The doctors were confident that the tumors on his spine would be gone or mostly gone by the end of the treatments. Watching him go through those treatments and seeing the toll it was talking on his little body was heartbreaking.

When he had finished all treatments another MRI was done. Unfortunately, the results showed that there was progression in his tumors. The radiation treatments were unsuccessful.

Due to the progression of his tumors the doctors put him on steroids to help reduce the swelling.

A couple of months later a clinical trail spot became available that could possibly reduce the size of the tumor. It was not a cure but a treatment to prolong his life.

After a long application process Sam was finally accepted into the clinical trial. The trial consisted of drug infusions every 3 weeks with an MRI after every 3rd infusion to check on the progression of the tumor. Unfortunately after the second MRI he was removed from the trial because the results showed significant progression.

At this time the only option was for Sam to get weekly shots to help reduce the speed of the progression. There were no more clinical trials that he qualified for.

At this point, Sam was so exhausted and hated having to go to the doctors. He didn’t want anymore “pokes” with needles and just wanted to be at home. So we as a family made the very hard decision to make Sam as comfortable as possible and enjoy the time we had left with him.

Sadly, on January 7th, 2022 Sam lost his battle to DIPG and this was also his older brother’s birthday. He held on long enough to celebrate one more birthday with his big brother. That day will forever be a very bittersweet day for our family.

Sam was such a sweet, loving, funny, smart, very brave and so much more. We were blessed with some many lasting memories. The help, support and resources we were given during that time was absolutely amazing. No child and their families should ever have to endure what this disease causes.