❄️January Updates❄️

MusicMan.

January 31st, 2025

Owen was in his first ever musical as "Constable Locke" and it was such a blast watching an old school musical be brought back to life for 5th graders! They executed the musical so very well with the help of their AMAZING music teachers! 

Carson was elated to be there... not only to step into his old elementary school again but to see his friends that were there, just like he was, to watch their brother or sister perform in the musical.

I barely choked back tears when I saw his friend's face light up when he first saw him since it has been so long since they have been in person together at the same time.

We even stayed after the show for longer than one would think because they were just chatting and enjoying the "in real life" moment together. It is these times in life that I forget how important those interactions are to kids! 

TuchYeah!

January 28th, 2025

Sophia the Fierce treated our family to the Alex Tuch Suite for the Sabres game. Along with a meet and greet with Alex Tuch himself that stopped to sign autographs and take a group photo with all of us!

We met new families going through the same nightmare of cancer in all different stages.

While it certainly sucks to have to have these nightmares that introduce you to the kindness, sweetest humans on earth... it also is a blessing to have these moments in time - not just with our family to forget about the sadness for a while and make memories with, but to meet the good that walks the earth every single day.

I leave you with just one thought through this - you NEVER know what someone was going through that day, that year, their whole life - in the car, on the plane, in the store... just take a moment and a breath before you utter something unkind or untrue. World's are crashing down daily on people... it costs you nothing to be kind. 

::stepping off my soapbox now but just be aware I'll get back on it if I need to::

💛

Port.

January 17th, 2025

Yes - this deserved its own spotlight here.

So - not only did he get to keep his port, but the surgeon that removed it, drew this AMAZING art of a Weber grill smoking, on his gauze.

How did he know Carson so well you might be thinking... he came in as they do to chat before taking him back and after having a brief conversation with Carson before he went back for surgery he asked what he loves to do with his time.

Naturally as you all have probably gathered by now, Carson told him that he loves to grill or when he can't he loves to cook! 

I swear these doctors and nurses continue to amaze me every single day with the way the go the extra step for this kids!

Surgery.

January 17th, 2025

Goodbye mediport! Hello freedom!

It is port removal day!! And rumor has it, he just might get to keep it afterwards!

I am so proud of him though. He knew he was still going to need to get pokes and blood drawn but made the decision to have it done like the rest of us with IVs in our arms or needle sticks.

Another milestone for our guy! I am so proud of him!

(New)PT.

January 15, 2025

Carson has been released into the wild to do his PT as a patient with UB Ortho. 

He had his evaluation and then they test his range of motion and he is doing really well. He will be on that cane before we know it and then, eventually...walking without an assistive device!!

Pictured above is Carson hiding under his hat to shield himself from any sort of pain. So silly!

Petechiae.

January 13th, 2025

Nothing prepares you for when the craziness subsides.

People warned me but it is like going down uncharted(dark alley ways) pathways.

You worry over every little sniffle, cough, pain and bump that shows up. Ones that on any given day with any other situation, I would say, WELP it's about that time for one of you to not feel so hot.

When Carson & Owen were building their newest Crunch Labs kit from Aunt G & Uncle M, I took a picture of them but when I looked at it, I thought he had a mustache forming BEFORE his stinkin' hair was growing in... nope not a 'stache... it was red dots - called petechiae - that wouldn't blanch under a glass(wouldn't turn white when pressed with a clear glass). Then, upon inspection, I found more.

See, when Gavin had ITP(a blood disorder called - Idiopathic Thrombocytopenic Purpura) years ago, that petechiae was the first clue(besides bruising and eventual weight loss that came shortly thereafter). I immediately panicked that his platelets were off and what could this mean... I went ahead and sent a message to Roswell and they got him right in within a day.

They checked him out and declared it could have been a fluke because everything looked well.

He was also still VERY puffy from the November chemo still. His diet was good and there was no reason for the water weight. They did an echo on him as well and his heart looked good. Going to keep up the hydration and hopefully get this extra water weight off our boy!

There will never not be something to worry over I fear...but let's face it, I will and I will continue to speak up like my life depends on it.