After our appointment with the surgeon, we knew we had to make some arrangements for Carson to get around comfortably.

We knew we needed a twin size adjustable bed or hospital bed because, with his room being upstairs, we inquired how he would be after and if it would be feasible for a bedroom upstairs...then, the doctor said exactly what our brains have been telling us:

"maybe you should make arrangements to keep him on the same floor as the bathroom"

DAMMIT.

As if my walls didn't already feel like they were closing in with every inch these boys and dog grew...it happens.

As if the stuff didn't already keep stuffing my home...ugh.

As if the clutter didn't already feel clutterful...whatever.

So, we unclustereffed our brains and set out on a mission to make it happen so Carson wouldn't feel bad(because hi, he is my child afterall and unfortunately owns that gene like a boss) and would be comfortable physically.

However...as the random stars align here in this wild nightmarish type journey, I get a call from the "Independent Health Nurse Case Manager" who is assigned to us with our insurance to which we have the option to decline or continue...but every time that number called, I was working. This time, I was finally off and was able to chat.

And let me tell you what...I am BEYOND happy to have been able to actually have this conversation on this day....

Long story short - she said I should see if our town/village has a "Lions Club Medical Closet" if I am unable to secure a twin hospital bed or adjustable bed for Carson.

Ummm, a Lions what now what? 

She went on to explain how they have new or gently used items that are available for donation that may be able to fit our needs like the hospital bed. If available so time is key.

Oh Mylanta, this RN was an Angel...absolute angel I tell ya!!!

I immediately got on the internet and searched up "Lions Club Medical Donation" and sure enough - there it was, right in our town and had a website and email contact! The NEXT DAY!!!!!!! the guy called me and we were arranging for a pickup of this fancy 1.5yr old or so adjustable metro mattress twin size bed. Pictured above, after the undecorating that had to happen and also...with little brother Owen testing it out. 😄

My heart and mind were at ease...one more step closer towards getting Carson comfortable after a surgery and unknown life ahead.

Thank you Lions Club and our angel RN for that suggestion! 💙

Legos have always been my favorite since I can remember.

Carson has always been able to build things without a book, give him a concept and he can build it.

When he found these huge sets, I was elated yet shy towards them thinking he may not give his time and his all towards them...

After the first building was built in no time at all...then the second...then the third, I knew I was in for it!

Then, he made a curious but interesting comment...

Mom - you won't need your village now or even the Halloween village, we can decorate these like the holidays!

This child's mind is amazing and always thinking one step ahead. When we found the lights for the Lego buildings, it changed the game even more. Now we can enjoy them at night too!

Thank you to the incredible humans in my life that never met Carson in person that contributed to his love of Legos, you guys have truly made life enjoyable and made my living room feel a little more put together by buying Carson a set of the boutique type buildings. I cannot wait to show you guys the entire set unlit and lit through the seasons.

It's these types of things in life, like Legos, that bring smiles and reminders that we aren't alone...so thank you to all of you amazing people in our lives that made those builds and lights happen! XO💛XO💙

In this house, we cannot wait to swim.

In fact, the second we could get a pool that was like this and didn't require an air pump, we did. 

The minute that the pool was full - Carson and Owen both would be begging to go into it - and it was always so cold! They didn't care and would get in for .2 seconds and get out shivering. Then laugh about it at bedtime. Rinse repeat - year to year.

One bedtime though, Carson mentioned that he was afraid he wouldn't be able to swim for the rest of the summer after surgery...so of course we obliged as soon as the pool was up and ready to swim in. 

And by we, I honestly mean Bob.

If I don't say it enough, let me happily say it right now and would be happy to say it another fiftyleven times - Bob is the perfect Dad. He is the kind of Dad(and husband, friend, son, etc.) that is fun, kind, smart, funny, honest, true to everyone he meets & always down for anything that his boys want to do within a GIANT range of reason. 

Today though, this mom's mind & body was overstimulated from the over scheduled week, that was coming off 5 days of chemo for Carson worry that I do so well, had a long day at work, was thinking about the scan results, fielding the forty text messages and phone calls about said results that I didn't even have yet by myself...so the second they asked to go swimming, I honestly wanted to just say "NO" because the minute I gave it thought...random things were running in my mind like:

was the pool too cold, 

too dirty, 

too chlorinated, 

not chlorinated enough, 

what if a random bug bites him, 

what if there is algae and we just can't see it and it reacts with his immunocompromised body, 

what if he does more than a toe touch and breaks the necrotic (dead) femur...

and on...and on...and on.

Not Bob though, and look, this isn't to say that he doesn't worry because let me tell you, this man worries. 

However, he doesn't worry out loud, per se, like I do. He worries over factual and in the moment things - you know, things that could actually pose an issue because he knows the pool was vacuumed, skimmed, chlorinated and tested prior to, etc...and because of that mindset, he said "LET'S GO! " Then, single handedly helped him up the ladder...safely. Got him into the pool...safely. Then, created that memory for Carson and Owen for yet another year in the pool...safely.

I want to be that way. I want to release the unnecessary worry. I want to be fun and sporadic like I used to be. However, I am afraid if I don't stand where I do in who I am, recognizing the dangers and seeing the what ifs more than others...then I will misstep and ultimately, Carson will suffer.

So with that said...our lovekin got to swim this year with Owen all thanks to Dad! And hey, even if it is the only time this summer, he at least got to feel "like he was back to his old self again" as he exclaimed before this photo was taken.

Annnnd I would be remiss if I didn't point out the obvious here that it's almost as if the pool is named after Bob...Funsicle.😄💙

I promise I know real words. Anyone who knows me, knows I meet my word quota for the day on any day that ends in "y"...but you all bring it out in me to be fair so there, I said it.

ANYWAY! 

Scanxiety. That's a cancer patient/cancer patient parent made word. 

Scan = anxiety 

Scan + anxiety = Scanxiety

Catchin' what I am throwing here yet?

PET scan day is today.

He also needs to be accessed(accessed essentially means that a nurse sticks a needle that acts like an IV tube with internal or external access coming in/out of the medi-port on his chest) at the Roswell Peds Clinic prior to the PET scan because they inject the nuclear medicine. So, with that, he will need the lidocaine on his port area at least an hour before being accessed to numb it for him which is usually done at home. Then we need to still drive there, then find parking, get to the clinic, get accessed and then get to the appointment in the main Roswell Hospital on time. 

After all of that and they call him back, the medicine gets placed into his port. After about an hour, I believe, he has to wait before the images get taken from inside of the PET machine.

Regardless - this scan is huge. 

Like...huge, huge.

This PET scan will show us a few things...

1. Has the chemo worked?

2. Has the cancer spread?

3. Has anything been missed?

And results are faster than I care to accept...I say this because while I would like to tell you that I enjoy getting the results as fast as the time it takes for the car ride home...I PREFERRRRR the oncologist to read them and decipher them for me before I can read them and start to do my non-medical research degree worry rabbit hole over the results.

Scanxiety is real...and exhausting.

Yeah I realize the title isn't one word but I need to stay the course here, don't @ me.😎😮‍💨

Anyway - y'all - if there could just be a day I don't have to organize schedules, it just may rid my face of the bags under my eyes that are the size of China and possibly not need as much caffeine as I consume, but I digress...

Here's what has to happen to today:

• I have to go into work at 7am. 

• Owen will get picked up at 8:50am to go to school for Field Day...outside...and it's supposed to be 92 degrees outside.

• Carson has an MRI & CT scheduled at Oishei Hospital for 10am(you know, that same place we were at for the last 5 days and just left YESTERDAY). These scans are with and without contrast and he can have nothing to eat or drink after midnight (aka NPO) last night until after it is done.

• Gavin has to get woken up by Bob before he leaves for Oishei, eat a good breakfast, get dressed and then hopefully grab the pencils I have laid out with the post-it for him about when we will return and obviously the secondary post-it saying "Good luck on your exam - you got this!" then walk to the bus stop by 11:10am to be to school for his Regents Exam by 11:45am. (*Disclaimer before those snarky thoughts creep into your brain about this bullet point - Gavin has autism & ADHD, therefore - the need for reminders, schedules and predictability are real*)

• The nurse needs to come at 1pm to give his Neulasta injection (it is a white blood cell/bone marrow booster he gets the day after chemo is done essentially). The dog needs to be put in our room for when she comes (VNA standard that animals need to be put away for when they visit - which I COMPLETELY understand & agree with since the dogs don't know they are there to help as a nurse not hurt the dogs human).

• I have to pick up lunch for Carson on the way home from my half day at work because, let's not forget, Carson needs to eat at some point - because he hasn't since yesterday! He is insisting on McDonalds...soooooo yeah.

• After all that is done, suddenly it seems, it is time to go pick up Owen from school early at 2pm(on field day - of course 😣) because we don't have bussing arrangements for the afternoon since I normally pick him up at 3:30pm but Carson has another appointment....see below:

• Carson has a surgery consultation at UB Ortho in Williamsville by UB North Campus at 2:45pm.

We came home after that long appointment and were so overwhelmed/overstimulated/overstressed that I am pretty sure we all barely spoke, had pajamas on as soon as possible and could barely form sentences when necessary...and may have all been in bed before 9pm!

Those days are just.too.much.

Somedays...it is all just.too.much.

When this all began, obviously I had to talk about this to everyone who asked and the number 6 always came up because people have that common misconception of surgery on cancer releases the cells into the body and that is no bueno.

WELP. Every single conversation I had, I had to tell them over and over and over AND OVER again, that our team can be trusted and our team has a strict regimen for this kiddo and how to beat a localized tumor. You know, science, not hear say or because their sisters friends cousins brother in law had their cancer spread because of sugar and surgery. 

YEP. 

And regardless, the number six was always in my head...because it was always a part of the conversation no matter what.

Basically the reason was - six cycles of chemo before surgery...June is the sixth month...June 25th was the original surgery date.

Then plans changed when chemo got pushed out and the surgeon wasn't in town for the 25th, I digress...regardless you guys...

WE MADE IT TO SIX! 

Chemo is finally done, the saline drip is finally done and it is hotter than a firecracker lit at both ends out there but we are going home today and Carson is going to continue being awesome...and also, no, I don't know why he drew penguins named Joey & Blake...he said the names "just came to him"...you guys, it's Carson, we just don't question those things, lol!!

Chemo Cycle 6! DONE! ✔️

It sure is tough in the hospital when you run out of things to do.

However, I cannot recommend this game enough. It is called "Rush Hour" made by "Thinkfun". Has a travel bag to put all the pieces into as well. Then, there are cards show you, on different levels, how to initially set up the board. The idea is, you need to move these plastic vehicles out of the way to get the red car out. You can play alone, with others or even take turns.

Carson and I played it for hours haha! We both are very competitive and love brain games like this and we had a blast.

And for a small chunk of time, we laughed, worked together problem solving and what was really cool...I could literally watch his brain work.

Chemo can't have my baby's brain...so these games will hopefully keep him sharp as a tack. (It doesn't hurt my old lady brain to play either haha!)

Happy Father's Day to the most epic and amazing human I know.

I still remember the first time we saw 2 lines on that test...I was near fainting status and you were so elated I thought you were going to hit your head on the ceiling from jumping up and down from excitement.

I still remember going on and on about being petrified if I would be a good mom, but in true Bob form - you showed up, like you always do, with a "What to expect when expecting" book...then shortly thereafter...the Jenny McCarthy "Belly Laughs" book because you knew I needed to read more.

Every idea I have ever had, you came along and made it happen. Any idea our boys had from food to building things, you make it happen. 

You are my best friend in this crazy world. You have been there through the highest of highs and now, our lows, but I know with you by my side - we will be on the high side in no time.

You are my person and are always there for me and our boys in a matter of seconds. I truly don't know how our life would be without you and I am hoping we never have to find out. 

You single handedly pick up my shattered pieces and make me whole. You bring the best out of each and every one of us.

You are the kindest, most unbelievable man I have ever encountered and our boys are the luckiest boys in this world to have you as their father and role model in this life. 

Sooooo keep that 'ish up...mmmkay?!😎😆

Must be dad's night to sleepover at the hospital because it is party night.😆💛

✔️Brothers came to visit.

✔️Video game [FINALLY] updated.

✔️Play for hours.

✔️Peppers & Ranch consumed.

✔️Dad watching Stanley Cup Finals.

✔️Feeling good until next chemo dose.

Father's day is tomorrow so here's hoping the boys aren't up too late!💙😄💙

Touché Cycle 6!

For some reason my little love is just pooped. Ok, fine, it isn't "for some reason"...I obviously know why but it is tiring anymore. 

I just hate watching him go from zero to 60...then make me laugh(peep those tiny hands though, typical Carson - haha!) only to suddenly get quiet and I find him like this...fast asleep.

I miss my goofy boy in these moments that I watch him sleep. 

The more I let my thoughts wander, the faster the tears come. Then, I am just angry and cry about how much I just miss our life before cancer. 

I know I should be grateful for finding this horrific disease early, having my baby in this world with me but GAHHHH if this isn't just so difficult and just keeps getting more and more tiresome.

That is all I got for now...sorry for the vent/rant...I guess I need some real sleep, too.

Bring it on Cycle 6.

We figured out that the steroids need to happen but cutting the dosage in half is where it is at! Same for the zofran...keep it on the clock at all times.

This is the final IE(Chemo names: Ifosfamide & Etoposide) cycle that is a 5 day cycle prior to surgery...this is the chemo that Carson gets every 12hrs with some meds in between to protect the heart and bladder. It is brutal on his body.  We need him to be able to take this chemo like the champion he is and then begin to heal to get ready for surgery.

Scanxiety is setting in for next week...I am so nervous I could just vomit...but only good vibes and energy for good results for next weeks scans AFTER the good vibes and energy seep into this lovekin for his chemotherapy these next 5 days!💛

Carson's health teacher reached out to me early on in this journey and asked if it would be ok with us if she could hold donation classes and if I could please send her some ideas of gifts for Carson. The Amazon wish list was born. 

What happened next was unexpected...the list was cleared within days...Carson added more things...and then, you guessed it, list was cleared.

Perfect strangers. Ones I might have crossed paths with at the store, through work or in passing and not ever know they would be such a huge part of our life some day. These wonderful humans just wanted to help our family in any way they could. And when I found out they would be donating their work out class fee to our family - I was like WHAT?!?!  

I was so overwhelmed with the feeling of love and hope one night I just sat and cried. I don't even know how I will ever possibly thank each and every one of you for your messages, gifts, laughter and love.

I am beyond humbled and grateful for the human beings who donated gifts for Carson that truly kept him SO busy during all his treatments, who donated money then showed up before work, after work, etc. AND wore Carson's favorite colors (one member even made a shirt for Carson💪!!!)and busted their butts and then - posed for a photo after it all! 

You guys truly are part of Carson's Army and we will NEVER forget each and every one of you. 

Especially you, Miss T - you the real MVP! 💙💛

Dear Carson,

Your kindness and loving spirit is palpable. You always know how to make us laugh. You never back down on anything you put your mind to. The way you create such a presence to the world is admirable. Your hard work and tenacious spirit through school, creating things or this horrible, horrible, horrible disease is incredible. I know you never wanted to have to be so strong and wasn't given a choice, but you are and you are crushing it! 

I watched you as you were just a couple of months shy of this big 13th birthday be delivered one of the worst words one can ever receive in ones lifetime, let alone to a 12 yr old boy and yet, you accepted what it was and asked all of the right questions. In fact, as we were comforting you, you were rubbing our backs and telling your adult parents that it would be ok almost in sync with us saying it to you. When the "get well" cards came flowing in and we read them together, I was in awe at the words left by your closest friends. You deserve the world and I wish I could give it to you somehow. 

I wish I could take all of this away and give you back the time missed out on this life as you knew it before it was infiltrated with cancer and talks of cancer, scans, blood draws, labs, transfusions, chemo, etc. etc. etc.

But Carson, please know this our sweet boy, don't let those things steer you from your good hearted nature. Because that is what will prevail. And that is part of this story you will tell to whomever needs to hear it when you're done fighting this evil beast. This is just another boss fight that you can conquer and tell the tale of.

We are SO proud of you. Looking forward to all the amazing things you accomplish in this life! 💛

Happy 13th Birthday buddy!

Love you to the moon and back,

Mom & Dad

First...all of our favorite nurses were in on this day. YAY! 

Second...the birthday balloon...SERIOUSLY?! With a card?!😭

Y'all - this wasn't a planned transfusion. It wasn't a planned experience at all actually! They called me at the end of their clinic day. We arrived first thing to clinic! How?! 

Miss Emily - that's how! The child life specialist that we met the first day at Roswell. She walked Carson through all of the random things that he may encounter and knows him so well and knows how anxious he is that she even reaches out to the child life specialist at Oishei so she can be informed on Carson's demeanor at check in to clinic. (If you recall, we check in with Roswell clinic BEFORE being admitted to Oishei for chemotherapy.) Miss Emily remembers names, favorites and knows exactly how to make kids (and parents alike) comfortable, smile and feel warm and fuzzy and less like you are in a hospital setting.

Not only were we greeting with a birthday balloon...but then as the nurse walks up she says while handing me a tag - "here, some parents like to keep these when they are direct donations."

I said "wait what?"

Then it hits me...my old coworker (as in, a coworker that left not old as in age😆) was a direct donation for Carson at Roswell not only that, she is a direct match in blood type! WHAT A WORLD! This was so amazing I cried like a baby and even made the nurses cry. To which the one nurse said "Carson!!! What is up with mom here making us all cry today more than once?!" 

He replied with "ha - welcome to my life" HAHAHA!

Thank you KS for your honest to goodness selfless donation to help my baby boy in his time of need. 💛

The nurse came to our house yesterday and casually mentioned that Carson looked a little pale and that his blood was slow to clot. She would let me know if his levels are ok.

Naturally, I had eleventy billion things in my brain and I honestly didn't flinch about it until I was driving to get Owen from school after work...it was one of those moments where you don't even turn on the radio because all of the thoughts flood through the brian gates like - What fresh hell will the levels show? Is this going to be a rough recovery again? Is this month going to be filled with transfusion after transfusion? Does he EVER get a break?!

I had to put my train of thought on hold because I like to greet my little Owen with the best possible mom when I first see him. I also like to make sure he has time to talk to me about his day and how he is doing. No music, no distractions, just him chatting and I, all ears!

Well, that process got put on hold as fast as I put my thoughts on hold because my phone rang over the speakers before we could leave the parking lot.

"Roswell Pediatric Clinic" is on my screen. UGH::that cannot be good:: goes through my head as I answer...

Long story short - she comes out with it - "Carson needs a blood transfusion, his levels are really low...we need you guys into the clinic first thing in the morning."

Rearranged the day to accommodate for our all day stay at Roswell Peds Clinic...and what happens next will bring you to tears. At least, for this weepy human you know it did!

When Carson is in the hospital, it doesn't matter if it is for the 2 day chemo treatment stay or the 5 day chemo treatment stay...he completely shuts down. He is just different.

When I say different, I mean the kid won't even entertain his favorite foods, drinks, snacks 90% of the time.

And it isn't for a lack of trying on our part, that's for sure!

Thankfully the doctor and nurses all agree that he isn't the first and certainly won't be the last to behave in this way when staying at the hospital. 

The most frustrating part of all of this is you just know he would feel better if he had the energy. Without eating or drinking and only having meds through his port, by mouth and then the saline constantly...you would think he would be famished or want something to absorb it all.

I don't know why chemo treatments for him or hospital stays for that matter, do this to him, but they do and they are wicked sometimes.

What I do know is - once this boy gets his body into this home of ours....he is requesting all of his favorite things. Including his brothers hugs, dog snuggles and peppers...but only the orange and red ones with ranch! LOL!!