How It Started...

We will add new stories and updates as much as we can on a different part of this site.

On this specific page though, we will tell the story of Carson's journey to diagnosis with Ewing's Sarcoma.

We also would like to plead to parents & guardians of young pubescent boys(and girls!!) to trust your gut when it comes to your kids.

If something isn't sitting right with you, say something.

Ask questions. Then, if those answers still don't satiate your nerves, say so, then ask again. And again.

Do not give up and if at any time you don't feel heard, speak up. Time is everything.

Pain.

February 28, 2024

For weeks on and off, he limped from the bus stop to home and wouldn't use his right leg as much as possible after getting home. Then the last week in February...it was easily 2 days of straight pain. I am telling you this was literal agony. The kind you could see in someone's eyes. He couldn't walk without limping. He couldn't sleep. He would cry after using the stairs. We knew that he was hydrated well. He is eating well. Did he break something? Did he sprain something and just keeps re-injuring it by using it all day? Maybe he needs to stretch?

We did what we knew to do from (unfortunate) experience of broken/sprained bones:

Rest/Ice/Compress/Elevation
Motrin/Tylenol alternate every 3hrs
Heat

But still...agony.

What were we doing wrong...I wracked my brain, lost sleep, learned stretches to show him from YouTube, consulted with others in the medical field.

But still...agony.

I googled it and the awful irony in all of this was the fact that it did indeed say ((read "say" as "scream")) "CANCER" amongst the results after I typed in the symptoms, location, etc. like we all joke about...this particular time I remember literally laughing at it and scrolled past it...and honestly, not sure why because something made me stop, look at it and make my spidey senses tingle but I continued to scroll on by.

The gnawing two things in my gut (the gut feeling I URGE you to always follow) were:

1) He couldn't point with one finger to a specific spot - let alone region -to locate his pain. It was "here, then sometimes here, then sometimes spirals down the leg"...

2) Motrin didn't seem to touch it, so he began requesting Tylenol instead and would start to refuse Motrin. ((My brain has always been trained that ~ Motrin = helps inflammation... Tylenol = helps pain.))

The next day (2/29/24)...things got a bit more clear.

S.C.F.E.

February 29, 2024

After two nights of barely any sleep(for Mom, Dad & Carson), I called the pediatrician's office. After I explained everything, they told us not to come in as there was a lot of of sicknesses going around and they would likely send us to an urgent care for X-Rays anyhow. They suggested to call UB Ortho Urgent Clinic and get an appointment for ASAP.

I hung up and proceeded to dial UB Ortho Urgent Clinic and was connected to a rep with scheduling.

This man on the phone just couldn't seem to understand that Carson & I couldn't articulate where specifically the pain was on his leg. He was about to schedule us for another WEEK out. I guess looking back, maybe he just needed a mom pleading to him that something is wrong...I couldn't explain why I knew something wasn't right but I did. Finally, after dealing with some sass thrown my way (which was completely unwarranted as I was being kind the ENTIRE call), I slightly snapped and sternly said "frankly sir, with all due respect, you are more than welcome to pick a spot on my son's right leg for your notes just as long as I have an appointment by the end of the day."

Oddly enough - guess who had the last appointment of the day? You guessed it - US!

2 X-Rays, an exam and then one more X-Ray...only to be told - not sure what is truly happening, I have a call into 3 different specialists do you mind if you hang tight a little bit?

Carson and I laughed, told stories, joked about all sorts of things - including but not limited to wondering out loud to each other if we would be able to cast goofy stuff to the exam room TV to throw the doctor off or even just play our phone's video games onto the large TV.

We were getting tired...and silly! We had been there for 3hrs at this point.

FINALLY - the PA came back in and said - we believe Carson may have what is known as a "SCFE" (Pronounced - "skiffy")...in other words a Slipped Capital Femoral Epiphysis and it appears as though he may have a slight hip dysplasia. He needs to be put on crutches immediately then we will have the docs contact you ASAP! You will need an MRI as soon as you can get one in. You can go across the hall and get on the books for the MRI at Great Lakes Imaging.

Then, the lady came in with crutches and showed Carson how to NOT be an acrobat with them and how to utilize them properly...and so we were on our way out and stopped in across the hall to see if we could at least get an MRI appointment for the morning.

Low and behold, the stars seemed to have aligned on that "Leap Day" and they could get us in at 8pm in the Williamsville location. WAHOO!!!

We went, he had the MRI and we left. The unknowns at that point were just plain old bizarre. In my true fashion - I researched the hell out of that "S.C.F.E." so I could be prepared with questions for when they finally would schedule our appointment with the specialist.

The call came on Monday morning and we were told we could be seen the next day (Tuesday)...the way life happens from this point is a tailspin.