🦃November Updates🦃

Fried.

November 28th, 2024

My brain feels as fried as this cat that chewed on the Christmas tree lights...

(It's a rug with battery lights - no animals were hurt in the taking of this photo)

I should be celebrating the fact that chemo is done. And I am. We all are. We are making sure we stay the course of positivity and try to be as honest with Carson about what is up and coming.

I can't stop thinking ahead though...about the inevitable long road of appointments, the unknowns, etc.

And ohhhhh do I ever hate unknowns and this whole cancer nightmare has been a vat of unknowns.

I feel like I can say this year has successfully taken fifty years off of my brain and body...so if I am walking around and look like I am confused or deep in thought... or if I haven't reached out via text/phone/email, thanked you for being you or sending something Carson's way or our way, if I haven't updated you on his progress...

I would love some grace...because all of that is likely due to being on limited sleep, having the brain power of a fried cat from the stress and trauma we are living in with cancer and honestly, I have no idea where the music is coming from.🤪

Thankful.

November 27th, 2024

We have SO much to be thankful for this year.

Carson being done with chemo is amazing. We will find out in December if this is it for good, but we are holding onto the hope that it is!

We do want to say to all of you reading this...we are extremely thankful for all of you who stuck by us during this season of unknowns...for checking in on us, made us meals, sent gifts or gift cards...you all have helped in more ways than I can even begin to say here.

We hope your Thanksgiving is a very happy & healthy one and please know how thankful we are for all of you!❤️

On a lighter note, please enjoy me in my stupid hat while cringing at the fact that I have to even touch this raw turkey.😩

Done.

November 25th, 2024

We went back to the room and learned that Carson's weight and urine input and output is still not great and before they de-access him from the lines...they would like to give him IV lasix and get some of that fluid off of him.

Miserable is the only word I can use to describe the look he shot me when I told him we would be there a little longer.

All for the good of his body I kept saying. 

So after he peed 100 times and asked for urinals to take in the car just in case, we were able to get de-accessed after 45 minutes of stress breathing and tears - because no - it doesn't get easier, even on your last round of chemo(his nurse was so patient and another earth angel...even I was getting restless and she just chilled and let him lead the pace for .getting de-accessed....thank you, K!) 

Chemo Cycle 14 out of 14 ~ D-O-N-E!✔️

Cake.

November 25th, 2024

((Please mind the balloon smoosh on the cookie cake - the ride it had to the car was quite an adventure atop the mountain of our stuff in the wagon and slipped a bit...but thankfully the rest stayed in tact and it didn't spill!))

Surely in this time of celebration of being done with chemo, Carson's mother must have gotten him a cake...right?

WRONG.

Then I thought, well, I will just make it up to him when we get home with whatever he is feeling up to for dinner and then when he feels amazing, we will make a cake, eat a whole cake, buy a cake - whatever he wants! Afterall, he more than earned it amiright?!

Anyhow...just as we were discussing the rest of the day and making plans to get Owen from school, etc...someone knocked on the hospital room door.

It was Olivia, from Olivia's Bears. 

The organization that reached out on the day of our first chemo treatment with numbers to call of Olivia's mom, sister, etc. if I have questions, asking for requests from the brothers and Carson... and what could they do to make his stay and our stay more comfortable - they will do it. 

I hadn't met Olivia up until today; I read about her. I listened to her sister tell me stories of how strong Olivia was through her cancer journey, I hugged her dad after stories were told but also watched Bob find solace in knowing that there is another dad out there that understands. I cried while her mother told me stories and gave me advice about now and for later.

So naturally, I sobbed when Olivia walked in and all I could do was hug her. (I then realized after she left, I never introduced her to Carson or Bob and vice versa.) 

Crazy thing is, the stars must have just aligned that afternoon because the "Olivia's Bears Teen Lounge" was having the ribbon cutting that was long overdue there. And it was on Carson's very last chemo stay. It felt good to be there and hug them and watch as they so proudly talked about their walk down this terrible path years ago and now how they are fortunate enough to give back to the very place that gives selflessly to all of us while in it.

After we watched the ribbon cutting, just as we headed back to our room to get Carson de-accessed and outtttttaaaa here... we were stopped by a doctor to go back to the room so we could talk before we leave.🤨

Blood.

November 25th, 2024

Transfusion number eleventytoomany.

When the docs come in this morning, we learned that Carson's labs from last night were no bueno.

They also explained that since his labs are showing low blood counts again and typically go lower in the days following discharge... he will likely need a transfusion by the time Thanksgiving is here so, instead of playing games, they will make sure he gets a transfusion before we leave. They are going to double check but it will likely be 2 bags.

He isn't necessarily pleased since if everything was ok, we should have been discharged by now... it also doesn't help that he knows that blood transfusions take a couple of hours for each bag to be transfused in. 

I am just hopeful that this is it - forever!!!

Last Sleep(over).

November 24th, 2024

Carson's labs are showing low blood counts and seem to be trending in the direction that tells the docs that he will likely need a transfusion by the weekend if his counts don't improve on his next labs.

He is still struggling with his fluid input matching the fluid output. They are going to do labs again on our final night here and see if his organs are still doing ok or if they should give him a dose of lasix to get rid of this fluid.

Too much fluid can cause a myriad of issues like kidney or bladder issues.

As if there wasn't enough to think about.

For tonight though, Carson and I are going to do our darndest to sleep tonight before and after chemo begins at 11:15pm... hopefully he can get through it. Late night chemo can be tough on him especially when he is sort of awake. He gets extra nauseous and then gets horrific tastes in his mouth. Which we have found that tic-tac's seem to help with that and also helps mom not get too nervous about laying down with something in his mouth. 

In the hope that he sleeps earlier on and well to avoid the chemo blah...I pulled out some old school mom moves. Took him for a long walk in the halls and then made sure to quiet the noises and lights in the room to ensure a calm environment. 

It's always hard to sleep here though with the sounds, the revolving door of people and...the worry.

So...I am also going to try to sleep early and try super hard not to think about:

• the urine output issues; 

• the bloodwork that will inevitably show us he needs 2 bags of blood;

• what are the long term effects of all of this;

• that this could quite possibly be our final night on J12 at Oshei...so basically a cancer parent's Christmas day is tomorrow - and you know how hard it is to sleep on Christmas Eve;

Sweet dreams Oshei... I hope this is our last sleepover together here on on J12 - or at all - and especially the last sleepover on this flipping air mattress.✌️

Weight.

November 23rd, 2024

Carson is really struggling this round. Struggling with weight, fluids, moving, etc...

His weight is up significantly in just a day or two...and the fluid input isn't matching the output.

This can cause stress on the organs - mainly the kidneys & bladder. However, also the heart and that is connected with his port in his chest.

The steroids obviously don't help with excess weight gain & fluid retention but they are a necessary evil to curb the nausea from the chemo doses.

We can get him up and moving around and that should help with some but I sure wish there was a way to know what the right recipe to remove this excess fluid from him. What I do know, though, is that movement is always better than laying around. So off we walked to the teen room and every other room we could just to get our walk in.

The one night doctor said there is something they can give him to make him pee a lot and that's likely what he needs right now. They said they will check in tomorrow and see where he is at. If he goes up again in weight we will need to do something.

Almost to the end!

Dogs.

November 22nd, 2024

Since as early as Carson could talk or walk even...he loved dogs.

Would (scare the crap out of me and) approach them with the biggest grin and highest pitched voice talking to them as if they understood every last word he was saying to them. 

We didn't have a dog until later in life, but I will tell you - it isn't for a lack of trying.

He asked every time he would see a dog if we could get a dog. There was this one time that he was SOBBING over wanting a dog. And there was nothing(besides a nap) that would calm him down...and oh yes, it is on video.

With Carson's beautiful soul and all that doggie love in mind - I absolutely was elated to find out they have therapy dogs visit the kiddos at Oshei. They even have trading cards like a baseball player would, per se, complete with their favorite toy & favorite hobby/activity. Just such a sweet little memento for the kids to remember their favorite furry friend.

However, just like how I NEVER get to see the Bills players when they come in...I RARELY get to see the dogs when they visit. It has almost become a cheeky little joke that Bob and Carson truly enjoy I think haha! They certainly make sure I know about it too.

Carson likes to make sure to save the trading card for me too so I can feel like I at least got to see what dog came to visit while I was working instead. HA!

Thank you to all that have a part in bringing the Therapy Dogs to the ones(and yes, ok, fine, and us parents too!) that truly need it!

Cycle 14.

November 21st, 2024

For those of you keeping track...this is the LAST chemo cycle!!!!!!!!!!!!!!!!!!!!!!!🙌

Also doing our best at the hospital to keep the bad germs out while also respecting the fact that Carson can't just stay in his room and revert back to the bad days of never getting out of bed.

Some kids seem to have zero problems hanging out in the room chairs, on the room couch and taking tons of walks...Carson isn't exactly his mother's child, as some like to say, with the extroverted-ness (oh and that's now a word, lol!) and didn't ever really want to leave the room but, in my opinion, it was more of a two-fold problem between him & us... I think he didn't want us to feel like we had to cart his pole around and walk slow(which is Carson's nature to not burden anyone no.matter.what. even though if you know Bob & I, we would crawl through fire for our kids...) and also he was always so nervous ever since his port placement surgery that he just didn't want be uncomfortable and accidentally hit that part of his chest. Then the leg surgery just exacerbated the angst of discomfort if he steps or turns wrong. Along with the whole chemo killing your energy thing.

And that's ok...

We need to have grace with ourselves as parents doing the ping pong of staying at the hospital every other day while also trying to stay on point with the other 2 boys, our dog, our home and our work.

I won't lie - we tend to beat ourselves up...and bad...that we aren't doing more with him or Gavin, Owen & Maisie(our dog). 

It doesn't help when we have seen the things we have seen and we are also trying so.damn.hard. to stay positive and continue this last cycle the same way we started it - optimistic...optimistic that if we stay right, he will stay right...then I sit here and think - do I even know what the hell that means for us? 

No...but what I do know and what I will continue to preach, sing, say, etc...

We can visit Alice in the rabbit hole but we cannot live there with her. She eats crazy things, she drinks crazy things and then wild things happen and then boom you're stuck in it.

We will prevail. We will beat this. We will be on time(ish) and ring the bell around Christmas...we have to...my adhd-ocd-lmnop-ism needs that for us to cap the bottle of hell that is 2024.

Please...God...PLEASE...I need this baby to crush cancer and be done. He is tired, his family is tired...but we won't stop fighting. Not now, not ever...we will never ever (ever ever ever) give up.

Countdown is on....

Pneumonia Pt.2.

November 20th, 2024

Guysssss.....

I don't know how much more we can handle here...

Having pneumonia in this house not once, but TWICE around an immunocompromised cancer patient within a short span is next level. Isn't it?!

I'd like to add that I LIT-CHER-ALLY just got new skin back on my hands from the cleaner I was using after Gavin and you mean to tell me I have to burn my skin off cleaning like a mad woman....AGAIN?!

But wait there's more...

This time...though....with the thought in mind that Carson SHARES A ROOM with patient zero?!

OH LORT.

I shall not panic...I shall use rational thoughts and movements and NOT FREAK OUT!

Send help...and maybe pizza...wait - no, not pizza, because then people have to touch it...send individual pizzas for all. GAHHH!

If you can't find me, just look in the corner of any room...I am likely rocking back & forth in the fetal position telling everyone "good vibes only".

Blood.

November 18th, 2024

Ummmm...

I witnessed my own child filling his own tubes of blood...with precision I might add.

I may or may not have cried...a few times, and not in his presence.

I was honored to be a part of it...honored...sounds strange, but in a weird a way his confidence exuded respect to our visiting nurse, to himself...look, I don't know how to explain it.

It was...gross(if you know me, this is beyond accurate) but...beautiful at the same time.

I am beyond grateful for our visiting nurse showing Carson that being his own advocate and being his own caretaker is special in this particular journey as well.

Yes, Chef!

November 8th, 2024

Chef Carson was feeling really good and decided for lunches he was making him and Bob B.L.T.'s and for dessert - peanut butter cookies.

They both masde sure to tease me while I sat in meetings but when I got home with Owen, we were able to get a cookie or two and they were heavenly!

Not only does Carson stay true to his crafts, but Bob brings out the best in him while he does it! I wish I worked at home to experience these moments but at the same time, I wish Carson was in a culinary setting at school to thrive.

Look out world for Chef Carson, this is someone you cannot sleep on with the finished product!

Inhale.

November 7th, 2024

This chemo cycle means Carson needs the inhaled antibiotic, though. This makes me nervous considering that he didn't react negatively to the IV steroid until the second chemo cycle. This is the second chemo cycle of this particular "new" med.

Am I crazy to worry...no...do I care what anyone thinks about me worrying...also no.

Hopefully this all goes well and Carson(also Bob) can get through with this treatment without any crazy events occurring...and just get home ASAP.

Chemo Cycle 13 DONE!✔️

Thirteen.

November 7th, 2024

Chemo cycle 13 is already here my friends! This one is an outpatient one too! So one day only!

Some say #13 is bad luck but NOPE, not this #13...no thank you!

I shall dub this one as:

CARSON'S FINAL CHEMO EVE!🎉

Disco.

November 2nd, 2024

OH.MY.GARAGE!

Have you ever been to a silent disco?! How about a Halloween Silent Disco?!

If the answer is "NO" to both of the above questions...y'alllllll - you are missing out! 

"What is a silent disco...how does it work?" 

I am so glad you asked! 

• You each get a pair of headphones that are associated with your ticket.

• Each "station"(that is predetermined within the headphones) is a different LED color light on the ear of the headphones

  • For this event it was - blue, green, red. Now for example... while you are listening to the "Quad City DJs - The Tootsie Roll" on the red station let's say, but your friend next to you can be listening to "Queen - We Are The Champions" on the green station, while your other friend is acting out the moves to "N'SYNC - "Bye, Bye, Bye" while on the blue station. 

• Then you basically all dance to your own tune or encourage your friend or group to listen to the same song!

I danced and sang with Carson's doctors, nurses and some of his best friends parents, who in turn have instantly become mine(we missed those that couldn't be there!)....and obviously along Bob - who knows how I am when I get to dancing! 

We got to see our Carson's face on the Warrior walk that was on display as well as take a group photo with the rest of the parents there out for a "night off", per se.

And! Not only was this a Halloween event, but it was a fundraiser for one of our very favorite non-profit organizations ~ "Sophia The Fierce!"

Bob and I dressed as Pikachu & Ash from Pokémon since Carson loves Pokémon and has lots to chat about with the nurses while inpatient over it. It was only right to honor him while out having a night with the people he is cared by.

We were blessed to have none other than Olivia's Bears sponsor our tickets....as well as have our very best friends in attendance with us AND got to dance the night away(truly could have used another 3 hours of dancing with that amazing mix of music)!

Thank you to Sophia The Fierce for hosting one of the best parties we have been to in a long time. 💛🎗️🌻

Sabres.

November 1st, 2024

Our family was invited to an event called "Hockey Fights Cancer" with the Buffalo Sabres.

We got to submit his story ahead of time when invited and then Carson was able to walk down the "purple carpet" with a Sabres player as they walked in from the outside. So, you didn't know who you would get to walk with because it was all random on who showed up when. Carson didn't want to be first in line when asked, so they came to get him a few cancer warriors/champions later.

Then, Dylan Cozens was his escort down the carpet. He walked at Carson's pace and chatted with him as we watched and listened to his story by the announcer. They got to the end, took the photo above and then he signed the jersey he gifted to Carson!

I will never forget Owen looking up at me when Carson passed us and saying - "Mom, why am I so emotional right now over this, I didn't expect to feel this way!" and it was exactly how I was feeling too...I cried while I cheered for him...hell, I cried for everyone that walked that carpet and cheered them on. This is a tough life and to be present in this moment is a true testament. I feel lucky and yet guilty. Lucky that we are blessed with these awesome opportunities, but then guilty because I feel so sad for the parents and loved ones of those who didn't make it through this journey while fighting so damn hard. 

Anyhow, we weren't even sure we would be able to make it but the labs came back early that afternoon and confirmed that we would be safe there. 

I loved seeing his doctors there and meeting new families in the suite that we may have crossed paths with but never had the time to chat. 

Speaking of which this is a funny story ~ there was a resident doctor that started coming around with the team midway through Carson's treatment and was and has been, extremely diligent. I feel like if I tell him something or ask him something - he is my kind of efficient.... Oh my goodness, when he walked into the suite we were in without a mask and I have never seen him without a mask mind you - I nearly fell out of my chair and exclaimed(unfortunately for me, out loud) - "Dr. Dave! Is that you?! I almost didn't recognize you!" haha we all had a great laugh about it but it just shows you how routine we all are and when we are "in the wild" together - it is so silly how we react!

The Sabres lost...even though Bob and our visiting nurse dubbed Carson "Dylan Cozens good luck charm" since he finally scored. The boys had a blast! We created so many random core memories and I am so glad the universe was on our side tonight to be able to go to this game.💙💛