❤️August Updates😎

Transfused.

August 30, 2024

Well - as we predicted prior to chemo this last round, Carson needed a transfusion. 

If you recall, his numbers were a lot lower than normal before he even began his cycle and we assumed this was coming. We had hoped to do this prior to his chemo last round but so be it.

So he had his lab work done and when the platelets dropped dramatically & his hemoglobin dropped to below range to be ok for chemo the following week.

Carson is a recipient of direct blood donations and this one comes from his grandfathers friend & his former soccer coach. ❤️

For more information on how you can direct donate for a loved one that may unfortunately need it at Roswell please navigate to this link: https://www.roswellpark.org/donate-blood-roswell-park/types-donations

IceCream.

August 23, 2024

Ice Cream after dinner...and then tomorrow morning we are outta here!

Chemo Cycle 8 DONE! ✔️

Family.

August 23, 2024

Sometimes after a long week, Carson tends to shut down a bit.

What is the one thing that brings him joy? His family!

So when Dad came with steak pieces & ice cream it is only natural that he brings with him, Carson's other favorite people! 

I love how much they all smile when they get together after being apart. 

You truly don't know how lucky you are until you capture it in a photo like this. Hospital setting aside, my babies all being together is everything. 

Cups.

August 23, 2024

One of our favorite nurses who loves to joke with us kept asking Carson when she would come in...

What's with these sour patch kids? Why are they in captivity?

That was when there were only 3 sour patch kids under these cups.

Even the residents and doctors who would come in would ask.

Carson didn't have an answer for them because this was during his Ativan around the clock spell that we didn't realize was happening until he kept getting overly emotional and we deduced it to that drug being administered every 6hrs!!!! As soon as he came off of it he could barely remember things and was feeling more like his self again.

And then...the nurse I just mentioned, came back with a HUGE stack of cups and Carson made sure to help her understand who she just gave a bunch of cups to lol!!

Exhausted.

August 22, 2024

Normally by now in the 5 day cycle, Carson is exhausted but rarely naps. This is how we can tell his counts are dropping.

We always encourage napping and resting but it can be a struggle. Especially when you have so many interruptions with nurses coming in to take vitals and with this chemo, when the one drug is being administered, he has to have the blood pressure cuff on and it takes his pressure every 15 minutes. When his pressure is low, it gets tighter so it can be very uncomfortable for him.

I don't know how he doesn't nap the entire day away...lord knows we could.

Caps.

August 21, 2024

There is a really cool program out there for kids going through cancer called:

Caps for Kids

They give you a list of celebrities to pick from and then they submit everything and eventually, your cap(hat) arrives with a signature from your favorite celebrity. 

Carson chose someone that he watches on YouTube and when PokeRev came in clutch for him and he was SO excited to put on the hat, he didn't even hesitate!

Thanks PokeRev for your signature and well wishes! It made his day!

Eight.

August 20, 2024

Chemo time again.

Started off with lower counts but high enough to start chemo so this may be a very hard cycle for our dude. We asked for him to get a blood transfusion but unfortunately, his counts weren't low enough prior to chemo for it.

Just a very strange thing when you know it would be beneficial.

Anyhow, the first night was a chill night - as it usually is when mom starts the 5 day cycle...if it were dad, they would have likely had a boys night. 😎

PostOp.

August 13, 2024

Another Post Op appointment for our boy. 

This time, they are saying that he can start giving it 50% weight and start moving that leg more now that he is healing from the possible popped internal muscle stitch.

Carson seemed excited but at the same time, very nervous. He so badly wants to be walking again but also is a very careful kiddo and worried to go back to square one.

Regardless, we will go at his speed and be here for him for whenever he is ready to give it his all.

Next appointment is Sept 24th and he will get another X-Ray while standing and then should be far enough out to be able to fully start giving it all the weight bearing that he can handle. 

Time (and surgeon) will tell.

Seven.

August 6, 2024

Back to your regularly scheduled poisonous hell...err I mean Chemotherapy Cycle. 

We are on Cycle 7 out of 14.

Halfway to the end, I guess. I say I guess because there is no beginning, middle or end in this "journey"...there is no prediction because who knows how his body is going to be going back onto the cycles of therapy scheduled for him.

This particular chemo treatment that he gets is especially hard on him. There is one particular drug that seems to be one of the worst. It is called doxorubicin(chemo drug). Some have dubbed it "the red devil" it can turn your tears & urine red. Not only that, they give him dexamethasone with these drugs in this cycle to protect his bladder lining and his kidneys but it is a steroid... we all know how some people just cannot handle steroids. He is one of those people. He gets exhausted, irritable and just plain miserable. 

Needless to say...he is getting through it one hour at a time. 

We all are.

Chemo Cycle 7 Done! ✔️

GoBills.

August 4, 2024

After we returned from camping, the following day, we were treated by our friends at Sophia The Fierce, Inc. to Bills Training Camp VIP Tickets.

What.an.experience.this.was!

We drove out to Rochester to the St. John Fisher Campus and getting a wheelchair bus was comical. The ladies there were entertaining and we waited a bit longer than we should have but we all got to have great conversations and laugh, which is always good!

When we got to the campus and were getting our tickets scanned, the boys went on to go through the metal detector. Welp, first timer here with a kid with a metal part in his body - the girls face as she scanned seemed like what I can only describe as stunned.

She understood, thankfully and I am sure this won't be the first time we experience things of this nature.

When we went in, we walked to the back where the players were practicing but were lead to a tent. We got swag bags, lanyards and told to help ourselves for food and drink. They told us when to come back to see the players and then we were off to the field.

It was so amazing.

In fact, two girls were standing up against the fence and Bob walked up to ask if Carson could just go right in front of them or to the side of them so he could see through the fence. Well wouldn't you know it, these girls just graduated nursing school and completely were empathetic to Carson wanting to see. They were even asking him questions and Bob too! It was all around such a fabulous experience.

We went back to get autographs on the Footballs and Mini Helmets that were brought to us by Kristina & Rick Benintende of Sophia The Fierce, Inc. 

Gavin looked like a kid on Christmas...he kept reciting stats and hitting my shoulder and telling me where certain players went to college and their amazing stats there too. It was one of the coolest things to experience through his eyes.

Then, Josh Allen walked up and said that our family was the coolest ever and he needed to get a picture with us and obviously we were like PSSSHHHH I GUESSSSSS SOOOO and then he touched me. And that's the most important part of this story. The end.

I kid, I kid! But he did touch me. 

We also were able to have an awesome conversation with Kaiir Elam after we took a photo with him. Carson asked him if he would wear his bracelet and he put it right on. He told us he hopes to see us again and we felt so seen and special even if only for a few moments. The whole experience was exactly what we needed to bring us to the end of the respite that was no chemo. We are forever grateful for Sophia the Fierce, Inc - Kristina & Rick. You made our whole summer with this!

We are set to start again Tuesday, if his labs tomorrow(Monday) show that everything with his counts are ok to start chemo again.