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Easter.
March 31, 2024
Happy Easter...and we tried...to be happy, that is, but the looming fear of surgery and cycle 1 of chemo was weighing heavily on all of us.
We found our baskets and then went to visit with family.
Tomorrow is the Mediport(aka central line) surgery and immediately following that, admission for Cycle 1 of chemotherapy.
Localized.
March 28, 2024
By now we had been through it, to say the least anyway.
Today, was our appointment with the oncologist again to get the official word whether it was metastasized or localized.
Ewing's Sarcoma, from what I was told, doesn't get staged per se. It is either in one spot/area (localized) or spread everywhere (metastasized).
I remember literally sitting on the edge of my seat waiting for her to say the words. I also remember HOLDING my breath.
Then she said one of the most positive things we have heard thus far in this process regarding his cancer diagnosis...
"We got the PET Scan results back and it looks like his Ewing's Sarcoma is localized!!"
Nuclear.
March 27, 2024
Carson had an EKG and Echo done today. Bob took him to those appointments so I could work a half day, then we planned to swap for the PET Scan later on.
Originally we were told the EKG/Echo would be done at the Conventus building. SO they went with the directions they had...only for them to find out that was terribly incorrect and they needed to go to the actual hospital building. With that, they ended up having to travel quite the length across the Conventus building to the actual hospital to get it done!!! Needless to say, Carson was exhausted especially being on crutches still.
We swapped for the PET Scan. This was being done at Roswell in the actual hospital there. We didn't wait very long and then we were taken back.
Carson was NOT pleased to learn he would need another needle prick but did so like a champion. Then we waited for the nuclear medicine they inject into your body for a PET Scan to make it head to toe.
They called him back and I essentially stalked the patient portal waiting for the results to show...while also checking my phone volume every 5 minutes.
Results.
March 26, 2024
Results are in...oncologist called and pretty sure I never answered a phone call so fast in my life.
It is Ewing's Sarcoma.
Some fast facts on that type of cancer mess...
Each year, about 200 children and teens in the United States are diagnosed with a Ewing sarcoma. This type of tumor makes up 1% of all cancers in children and adolescents younger than 15 and 2% of all cancers in teens aged 15 to 19.
Almost all cases of Ewing sarcoma occur in White people and Hispanic people.
The last time a medication or treatment for Ewing's was developed was OVER.40.YEARS.AGO. Let that sink in a minute.
It affects slightly more boys than girls.
It does not appear to be inherited (passed down in families).
Every single day 47 children will be diagnosed with cancer in the United States EVERY.SINGLE.DAY.
And so our journey begins fighting this rare disease...
*The photo above is credited to Carson's Mom who made it from scratch - all rights reserved.
Biopsy.
March 22, 2024
The whole morning felt strange. As it should before your child gets a procedure under anesthesia.
We met with a bunch of people and had to explain and re-explain with and without tears why we were there since they all need to confirm like they don't know...but I get it. So don't at me.
The Child Life Specialist came in and gave him a squishy for his anxious feelings and they talked about what he liked to do. Naturally the words "I like to play video games" came out of his mouth and soon after, the video game cart arrived. Carson was ecstatic that Minecraft was on there and quickly showed his skills off. He built trampolines for the random things that spawned in. He built a light up dance floor. A house with active lights and doors. The Child Life Specialist was floored with the talent on how fast and how knowledgeable he was with the sciences behind the different combinations of elements to create reactions such as those. It was a cool experience.
Then, as the team walked out and it was just us three waiting for his turn, I captured the photo above. That smile, those freckles, his eyes...slay me. His heart and soul...slay me. In that short moment of time...I wished to wake up from this nightmare, for the biopsy to come back as benign and everything was just over reactions, and for time to slow down for a hot minute.
You see, it was because of the swift actions of the surgeon's assistant, surgeon himself, our oncologist and pediatrician, that they were able to call the director of Oishei to coordinate the appointment of this biopsy to get the official answer to start moving forward since we were now nearly 1 month in from discovery.
He went back for his biopsy after the intervention radiologist talked with us and then we did more waiting...
For the biopsy to be done safely.
For Carson to wake up from the anesthesia safely.
For Carson to recover safely.
And...for results.
Roswell.
March 21, 2024
Today we had our first appointment with the oncologist.
Few things to note about her:
She is so lovely.
She is a mom of 3 boys as well.
She is real and upfront.
She treats you like you are her only patient & family.
She has empathy for not only Carson but for the rest of us involved as well.
We asked all the questions we needed to get off of our minds. She told us all the things we needed to know (and needed to hear honestly) Carson engaged in questions with her as well.
He also had his first bloodwork and managed to get a bunch of appointments scheduled that day as well.
Tomorrow is the biopsy that will tell us everything.
*The photo above is not mine and is from the Roswell Park Cancer Institute website.
Concert.
March 19, 2024
Carson was doing well most of the month.
Going to school, maintaining high honor roll grades, going to band practices, getting around like a boss on his crutches.
He was getting SO excited because his school was able to have a successful conductor named Dr. Ward Miller come to school and they got to practice with him at the podium. Then, they would perform at the high school, on this night, with the high school bands also there performing. But first, another appointment.
Our appointment this time, was with the surgeon at UB ortho that morning. All Carson could talk about was how excited he was for that evening's performance.
Yet - all Bob and I could do was live in our own thoughts. It was palpable.
When we were called back it actually felt like we were moving through glue and time was stalling. Back in the room we all nervously fidgeted with our phones or while sitting...then the surgeon walked in.
The conversation went something like...
words words words ::pause:: words cancer words malignant words ::pause:: do you guys have any questions?
Most of the conversation is a blur because the surgeon said the words that Bob and I never, ever, ever(you get the idea, I'm sure) wanted to hear.
He was pretty certain it was Oseteosarcoma or Ewing's Sarcoma from the looks of it. We would need to stay viglilant that he is careful on the crutches because any unneccessary action that would cause a fall may actually, in turn, cause a fracture. He has about 6 inches of necrosis (dead bone essentially) where the cancer likely started and then the tumor formed on the outside.
We cried with Carson, we hurt with Carson, we were angry with Carson...we knew in that moment - his fight is now our fight.
And "Goonies never say die!"*
*Disclaimer - I regret to inform you all that Carson has NEVER seen "The Goonies", so he won't know that movie quote above but currently, I am narrating the story.
We went home that day completely shook at the news we were just given. We also all got ready for the concert that evening that Carson was SO looking forward to. It was so wonderful that if even for a small time we could focus on being excited for him and not feel or heavily think about that icky 6 letter word.
Below is the YouTube video of the concert.
*Credit to the AHHHHMAZING WSCSD Ed TV & AV Department, specifically Mr. Pacer.
Disorganization.
March 13, 2024
Never have I ever...
dealt with people so disorganized
dealt with so many unknowns
dealt with people who don't know how to communicate
dealt with waiting for answers when everything feels so heavy
BUT YET...here Bob and I were...doing all of the above with a level head and kindness in our hearts because sometimes people mess up. Sometimes it isn't the human on the phone, it is the procedures that are in place because of laws, rules or control freaks above them. Sometimes you get more bees with honey than vinegar.
"When given the choice of being right or being kind, choose kind." - From the book "Wonder" by R.J. Palacio
Finally, in some strange twist of events, I ended up ultimately speaking with a woman who had empathy, gumption to get answers FOR US and even offered her cell number to me as I sobbed on the phone to call anytime.
Then it was finally at THAT moment...when things started moving fast, it WAS NOT that day the doctor told us back on March 5th. This woman started the ball rolling and understood the urgency with extreme empathy.
*The photo above is from the free vector art website.
Contrast.
March 8, 2024
When we arrived for our appointment, I was able to go back with Carson.
First, they did the CT without contrast. When the lady prepping the CT machine said "ok, so you are here for a chest CT, what's going on - are you coughing or having any pain?" Carson immediately looked at me and then I said "well, I think, from what his dr told me on the phone is that they just want to be sure nothing is present in the lungs" said while giving her the look...like hello lady I don't want to scare him and say what I am fearing.
She literally looked so confused and kept asking clarifying questions.
I finally said "they are also doing an MRI with and without contrast of his leg because they found a suspicious mass. I guess it is to make sure it hasn't spread...and all of that probably present in the notes and documentation, so yep, here we are."
After the CT I could tell Carson was getting nervous.
This was Carson's first imaging with contrast...which, of course went ahead and unlocked a new level of fear for him - IV's.
The guy that did his IV was very nice and calmed him as much as possible. He explained how grown men cry while getting IVs done so the fact that he is just breathing and using his winter hat over his eyes, shows how brave he is over those big guys!
After that, we went home and thought it was going to show us a benign cyst and call it a day.
I wish.
*Please note the photo above is NOT Carson's body. It is from Radiopaedia.
Suspicious.
March 5, 2024
Suspicious...that's the word that replays in my brain that the doctor first said to us after pulling up the MRI of his femur on the screen.
Then she says "So, it isn't a S.C.F.E. - I am so sorry to take more information from you and give you more imaging and unknowns but it just doesn't look right. It appears to be outside of the bone in between the muscle and bone area pressing on a nerve. It is really hard to tell if it is benign or malignant at this time."
I remember turning my head to my left to look at Bob and seeing his eyes well up. Multiple thoughts flowed through my brain immediately following...
Why is my rock welling up with tears?
What just happened?
Why do I feel like I am going to vomit?
Right before we walked out - we were told things are going to start rolling pretty fast with multiple appointments so be ready and be by the phone.
We walked out to the car and had one of the most quiet car rides with just us 3 in a long time. Little did we realize how many car rides we would have with fear, sadness and more tears.
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