🎆July Updates🎗️

Camping.

July 26, 2024

I won't lie, I didn't think we were going to get to be able to go to Allegany.

We cancelled multiple camping trips such as:

• Rock N Roll Hall of Fame

• NFL Hall of Fame

• Lake George

• Allegany (Spring)

• Finger Lakes

So to think we were actually going to be able to get to Allegany for our long summer trip, just didn't seem feasible with this surgery so close by.

But we did it. We went camping. Just like we all love to do!

We went fishing. 

We sat around a campfire and laughed. 

We played Risk with Carson's Grandpa(Bob's dad) until 1:30am...and we still need to finish it lol!!

We lived.

We adapted.

We figured it out and we made memories that will ALWAYS supersede anything that was so awfully hard this whole year.

I would do it again in an instant if I could hear the laughter and forget the words: Chemo, Cancer, Surgery, Ewings, etc., etc., etc.

Then, the next day after we came home from camping we got the best VIP experience we didn't even know existed!

Pain Returns.

July 23, 2024

Remember how I literally just said:

"We got cleared after the staples came out to do some light stretches and exercises to try to put some more movement and stretch onto his right leg. YAY!"

LUNCHBAG LETDOWN CITY!

Well, sorta.

It was going well all day...

I went to bed early last night since I had to work a 10 hour day and get up at 4am the next day, so Bob was up with Carson. As he was helping him get to bed, Carson complained a little of a "stinging type of pain that felt weird". He took his temp(we have to every single time before giving him Tylenol) all was good and then gave him Tylenol. To bed they went with no issues through the night.

I went to work at 5:45am and by 8am I was getting a call from Bob that Carson was in excruciating pain and crying and not moving his leg.

I called the surgeons office, left a message and then emailed them.

The surgeon called my cell within ten minutes and asked us to come to them for an X-Ray and to be seen ASAP. 

Long story short...he may have done too much and popped an internal stitch. He is to rest and not overdo it or exercise the leg for a few days until we are sure he is doing ok with bed rest per se and some ice(he was concerned with blood loss internally).

Of course this would happen right before we went to Allegany to go camping for a week...even though originally, Carson and I were only going for the weekend due to this, Carson started to feel better and better with every hour that he rested it and then before I knew it, I was packing to leave that same day.

🚨WARNING🚨 

🚩BEFORE SCROLLING TO THE NEXT PHOTOS🚩

THEY ARE OF HIS SCABBED OVER INCISION WITH STAPLES DO NOT LOOK IF YOU GET NAUSEATED EASILY!

40.

July 16, 2024

40 Staples.

That's how many our guy is getting out of his leg today. 

And guess who is keeping them...well CERTAINLY not me...but yep - our Carson.

He will also be getting a bone scan done today as well as an X-Ray of how it is healing since we are about 2 weeks out now.

The bone scan will plot points on a graph for his surgeon(he had one done 4 months ago as well) to show how his bones are growing and aging so we can get a good estimation on when or if he will need another surgery to either stunt one legs growth so he is even per se or if he needs to have any adjustments done with his growth from the artificial placement.

Dr. Fuller who is a younger doctor was so sweet and caring to Carson and even happily put on his Carson's Army bracelet that Carson gave him and Dr. Kuechle. He removed the staples on Carson's time (IYKYK) and was shocked when Carson asked to keep them. 

We hope to add them into a bead of resin per se and add them to his Beads of Courage line that he has. (More to come on that but you are welcome to Google what it is all about or follow this link here: https://beadsofcourage.org/ )

Great news though - we got cleared after the staples came out to do some light stretches and exercises to try to put some more movement and stretch onto his right leg. YAY!

Friends.

July 10, 2024

🎶I get by with a little help from my friends...🎶

I was always told that I make friends so easily.  Yet - I always found it so difficult.

I also am told frequently that I am so chatty(I am sure I have the report cards to prove it, but most of you can confirm). Yet - I actually do not like talking.

I get told I over explain when I am asking something or talking about something. Yet - I think those people don't realize I have an autistic child(ok he is basically a man child now) and am very much used to clarifying for him. Or the kids I worked with in Special Ed.

So when I find people that are my KIND of people...it reminds me a saying my grandma once said to me when I was younger and going through the dramatic middle school friendship phases.

"I would rather have 4 Quarters than 100 Pennies, Jessi, wouldn't you?"

At the time I remember thinking, well technically - money is money so if I have it I am going to Convenient to buy something but ok sure. I truly didn't know what she meant until I was in high school a few short years later.

I reflect on that more and more as I get older and even instill the ideation into my boys because it sure is a great visual for someone who can't see light at the end of whatever their tunnel may be at that time.

While I am lucky to say that I gained a whole lot of "Quarters" in my time on earth thus far...I don't know how I would even be able to get through some of these days without them and what they do to make our lives a little easier, brighter and sweeter. What they do to bring smiles to our faces or to make my porch a little prettier, is just invaluable.

I hope all my fabulous friends know you are more than a Quarter to me, you're all Silver Dollars.🫶😉

From the bottom of my heart - THANK YOU 💛

Brothers.

July 9, 2024

We got the living room all ready for Carson to feel comfortable and sleep since his room is upstairs with Owen and he cannot do stairs for at least 6 weeks.

Owen asked if I could put a sheet on the couch so he could sleep there in the same room as Carson so Carson wouldn't feel alone. I would like to say I was surprised by Owen asking to sleep here but I wasn't. So, I did and told him only a couple of nights and then back to his room.

Future me here to report - Mom lost this battle and Owen slept on the couch for nearly the whole time Carson did. If Carson was in the hospital, Owen would go to bed but otherwise...he was right there by his side in the living room.

Ever since the day Carson met Owen...it was a connection I cannot even describe. As they got older they grew closer.

So close, that even Owen has the same friends as Carson now. They invite them to their birthday parties, game chats, etc.

When this all began Owen seemed confused and it didn't really hit him until night one without Carson. It was heartbreaking to say the least. He was lost without him so I knew this new challenge would be a struggle for him as well. He is navigating it with a lot of empathy and maturity and we are so proud of these boys. Though, it doesn't make it any easier, I hate this for all of them in so many different ways.

When I got up to go to work and went to give them quiet kisses on their forehead and saw the dog sleeping on the floor(she isn't sleeping in this photo obviously because heaven forbid I go to Owen and tower over him lol) and just had to get a photo of this moment.

Lights.

July 7, 2024

Ever since we started these hospital stays, we find something new.

Almost as if we are watching the same movie over and over and finding those "Easter Eggs" wherever we go.

Even though we were on the 11th floor the lights, the windows, doors, etc. are all the same. When there are changes or something off you haven't noticed before you tend to get excited or act...like a child per se.

Bob and Carson always find the fun when they are together. We playfully call it "boys night". They stay up late and watch goofy things together and eat snacks late at night.

I was working and got a text as I normally do but this time it was a couple at a time...

Bob: Hey

Bob: Guess what?

Me: ? Chicken butt?

Bob: We figured out the thing behind the bed...

Bob: *Sends photo above*

Me: OMG NO WAY is that lit up?!

Bob: Yes!! It is controlled by the bed remote!

Me: OMG seriously, how amazing is that?

Bob: Yeah, leave it to Carson pressing buttons.

I only tell you this because, like I said before, you are reliving the same thing every 2 weeks. Things stay the same and if there is a change, you notice and you share with your person who lives in it with you. So this is just a goofy little note - but I will tell you - it made my damn day and to hear Carson telling me all about it when I picked them up at the hospital, made it even more.

With all of that being said - notice the little things, to someone, they may be big things or their thing in the moment and it just might make their day. The world needs more of people making other people's days. 

Surgery & Recovery Stay - DONE!✔️

Recovery Pt. 2

July 6, 2024

Of course we had to bring in the brothers and document the weird things that happened while we were in this pseudo nightmare. So I hope you enjoy this visual story of the madness that was recovering from a partial hip replacement for a child.

It is almost time to go home with a walker...and to Carson's new bedroom that was once known as our living room. LOL!

P.T.

July 5, 2024

Look, I am not a southerner but when I think of this P.T. experience I have only one thing I like to say...

Y'ALL. Bless their hearts.

Let me put it this way...have you ever been so tired but you are forced to function and think and do and have answers for things that generally speaking, you would have but you can't think because you're on MAYBE 4 hours of sleep in the same amount of days. Well this is exactly when P.T. walks in and wants me to "not coddle my child" or grill me like they are C.P.S. and I am a deadbeat parent.

Y'all, bless their hearts.

I still smiled, I still complied within reason of what they wanted to do with Carson to get him moving and grooving. I made a plan and I focused on it. I wrote it on the board, I communicated it with the nurses, the dr and ultimately my husband.

Then they pulled the same thing on him like they never ever even talked with me.

Y'all, bless their hearts.

Then it was game time - the one nurse told us that P.T. was coming in at 9:30am and she would like to see us get to the chair today. I looked at Carson and said "BRING IT we do this within 15 minutes, we can go home!"

I won't lie - I wasn't optimistic, he was angry at everything that morning, we were so friggin tired. It was rough. Then, he looked at me with that sweet little face and said "Let's go, right now, I can do this if you can!" 

So we did...and just as my baby was scooting along at the 10 minute mark, the P.T. lady came in and was SO impressed by both of us being very adamant all while being safe. We worked on exercises and guess who got to go home within another 24 hours after the doctor checked in...WE DID! 

We knew we had a long road ahead of us but we also know Carson does MUCH better at home than he does in the hospital. Here's to healing!

Recovery.

July 5, 2024

I could write a book sometimes, I swear.

I have thought of different titles already of chapters...this one right here would be it's own chapter and I would call it one of the following:

"Are we being pranked?"

"Punk'd 2.0 - Medical Edition"

"Are people aware of the dumpster fires they create/cause?"

Anyway - surgery went well. It was about 6 hours. He needed a blood transfusion through it as well. The surgeon was extremely happy that he was able to do what he had hoped he could do once he got into the leg and...

MARGINS WERE CLEAR! For those of you who are unaware, this means that when they removed the section of his femur (femoral head, neck and stem for lack of better words) and sent it to the lab for initial testing to check for the margins, it was a phone call to the OR that they removed the correct amount of bone (18 inches!!!!) and in turn, Dr. Kuechle & Dr. Fuller produced clear margins!! The sarcoma that was in the bone is GONESVILLE!

They replaced it with a titanium modular piece, nicely described by the docs as "like a Lego piece that fits together but can be separated in 3 parts if heaven forbid we need to revise the surgery down the road.".

However - we found out the hard way that we WERE NOT going to be on J12 South and ended up being placed on the Surgical Floor. But I will say, one of Carson's favorite Nurses - Christian - made sure to stop down and give him a hug and talk about their favorite shows like they normally would upstairs on J12 when Carson gets chemo. I think that's who had something to do with decorating his door to our surprise one morning. (Thank you Christian and J12 family that did this!! You're all so amazing!!)

I won't even get into the maple syrup that was flung about the entire room like it was modern decor.

Needless to say - we are relieved about the clear margins and we know we still have quite the recovery ahead of us and then more rounds of chemo after that but this is promising to us that he may not need radiation too!

Recovery is going ok so far but looks like we are here for 5 days total unless we work super hard to show them that we can continue proper care and strength while at home. CHALLENGE ACCEPTED. 😎

Fireworks.

July 4, 2024

Between the surgery and the nightmare of being thrown for loops at every hour that passed after the VERY successful surgery...it was bittersweet to sit and watch fireworks from the hospital window.

I was grateful that Gavin & Owen(Carson's brothers) were with their grandparents at their Uncle's house for the fireworks show in East Aurora so they could enjoy the 4th like we typically would do. It just was hard to all be separated for another tradition.

As each display of lights went off I was at peace, at least, knowing all my kids have people in their lives that care about them and know just what they will need to keep their minds busy.

Surgery.

July 3, 2024

The day has arrived. 

Carson's last bag of chemo was around midnight June 17th...so we have had a couple weeks off here waiting for this day.

Couple of weeks of anxiety...

Couple of weeks of preparing...

Couple of weeks of L-I-V-I-N-G...

Carson was able to have his brothers home with him to enjoy the end of June before we "get to"(who really wants to climb these proverbial mountains anyway but I digress...) climb the next mountain.

Carson seemed hyper focused on not being able to eat after midnight. SO - we entertained the thought process and we lived in that moment laughing while ordering the child a Whopper from Burger King via Door Dash...at 11pm no less! (We obviously ate second dinner with him, we aren't monsters!) 

The night before surgery was awkward. It was awkward in a sense that this is territory we have never been to before. They were having us go to Buffalo General Hospital for the surgery then recovery would be at Oishei Children's Hospital.

When we arrived, we were optimistic that he would still be treated like a child as they do at the other facility(Oishei), under the same organization of Kaleida - who would ever think otherwise.

HA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Welp, we arrived to a shared room with a man getting ready for his vasectomy....with a CURTAIN separating us and this man waiting and talking with the doctors and nurses. (In case you were wondering how we knew what surgery he was having, I stress the curtain part.)

We brought his lidocaine cream to put on his port that has to be on for about 30min-2hrs prior to his port being accessed so I didn't want to do it too soon because I have had surgery before and I know they almost always have delays.

They called the anesthesiologist only to hear that he didn't want to access his port...you know, the thing that helps keep him from getting IVs, etc....so after hearing that, the nurse tried to start a line on him, couldn't. Instant bruising, crying, pain. The nurse finally called the anesthesiologist and said - "you need to come and start this child's IV as we have tried and he has no veins"(this occurs from chemo, etc.

So, the anesthesiologist walks in with an U/S machine to help his accuracy. I ask if we can just wait until he is in the OR like they do at Oishei and he said "No, mom, we don't do that here for the child, no." 

Ummmm why? I am literally giving permission, etc. What do I know though amiright?

Anyhow - when I tell you this was a hot mess express - I am being kind. Blood on the floor, I was fainting, more blood, Carson is crying and at one point yelped while crying...it was a nightmare before the nightmare for him. 

The OR Nurse Angel(she was a literal angel, her name was Sue though)...hugged me as we were wheeling him back to the OR doors and said she wouldn't leave his side for anything and promises to take extra good care of our baby and she will update us as soon as she can...all while Carson was getting twilight type meds...right before we were saying "see you later" and our love yous.

5 hours of the surgery waiting room is up next...grateful I have my best friend by my side for this, and he made a great pillow. ;)

Awareness.

July 1, 2024

🎗️July is Sarcoma & Bone Cancer Awareness Month.

We don't need a month to make you, Carson or any of his friends & family members *aware* of the cancer inside Carson's body. If I may though, just borrow a moment of your time though, to remind you that this type of cancer that Carson has is extremely rare.  Chemotherapy drugs to treat Ewing's Sarcoma haven't been updated in over 40 years! FORTY YEARS! Children are getting the same treatments adults are with this rare disease. Yet...only 4% of ALLLLLL government funding is allocated for ALL PEDIATRIC CANCERS. Make it make sense! 

Luckily there are incredible organizations out in our communities right in WNY that have raised funds to go towards grants for scientists developing clinical trials, supporting legislation, care, etc. Don't you feel our kids are worth more than 4%? In fact, every time I think about this...I think about how naive I was 2024B.C. and how did I not know about this madness?!

Which, is all a bizarre dichotomy isn't it? 

I guess you just never imagine this being a fact you need to know. As such. when you hear about kids like Carson - after profusely praying, hoping and wishing they just make it through this fight a survivor...you then turn and pray, hope and wish it never is for your own littles.

Yet, as I sit here in Cancer Parent Land(0 Stars - wouldn't recommend) - I am just angry that I didn't know...I didn't help more, reach out to local legislators(I hate politics FYI so this should be telling, lol), volunteer to do more - SOMETHING.

With all that being said - this July, as we wear yellow for Sarcoma & Bone Cancer to raise awareness, if you find yourself able to donate to local community fundraisers where funding DOESN'T go anywhere else but to help pediatric cancer patients - do it, because without these donations - we sit at a messily 4%.