🎃October Updates👻

Halloween.

October 31st, 2024

🎃Happy Halloween!👻

While Carson wasn't necessarily thrilled to miss out on Trick-or-Treating this year...his only request was that Owen got to Trick-Or-Treating <insert tears from these parents> I was speechless when he said it! I am just in awe of these boys' hearts every single day that passes.

Oddly enough... without a single conversation had about it... cue my very best friends, aka earth angels, inviting Owen along with them on beggars night and then at the end of beggars night dropping off Owen with donuts & cider from Mayer Bros. along with a bag of candy just like Carson went Trick-or-Treating himself!

Watching him sit and go through the candy with Owen was priceless and I lived in that moment because it was SO telling on all levels.

Halloween night - pictured above... Owen dressed as a banana, Carson as a Gorilla(without his mask) and Gavin as SWAT to ref the game hahaha!

My heart is full and to be fair - this is my kind of Halloween right here. Together and present.

Transfusion.

October 28th, 2024

Today Carson gets to come home!

However, not until he gets two bags of blood. 😑

To say he wasn't happy would be an understatement but it is getting to be a lot. We can't blame him. We can still get him smiling for pictures though so there's that!

So instead of getting out in the morning, Bob and Carson had to stay until nearly 4pm. They had one of our favorite nurses too so that extra time makes it a little less rough.

So, with that...

Chemo Cycle 12 DONE!✔️

Walks.

October 26th, 2024

Carson and I have our random routine lately...after dinner walks.

These walks usually occur after Bob has tried to get him to take a walk all day long. I feel bad that his hard work then my annoying nature gets him up finally and moving, but teamwork makes the dream work, lol!

Sometimes we talk and stop to talk to the nurses, sometimes we just walk and stay quiet. 

Sometimes we play air hockey for only one round... then sometimes stop in the family room and look for a snack or grab a freezie pop.

But then, right before we head back to the room, we just stare at the sunset because being on the top of Oshei, you get to experience some really cool sunsets (& sunrises).

I truly cherish these walks. They aren't for very long but they are long enough to get us moving and into our right mindset.

Treat.

October 26th, 2024

Olivia's Bears was kind enough to deliver our family some Treats for Halloween.

In turn, I was able to bring Carson their treats picked just for him on my night in the hospital.

He sure needed a pick-me-up and obviously, in turn, it gives us a boost too!

I will be forever grateful to these amazing people for all their love and kindness they continue to share with us.💛

Teen Lounge.

October 25th, 2024

The teen lounge is almost ready! 

Olivia's Bears is working on a great space for teens to go to outside of their room that is geared towards them.

Carson loves seeing the transition and I have to admit - so do I.

I feel like this is going to be such a fabulous space for these kids that they can bond through and just be teens.

I love when a community sees a need and jumps on it and stays with it even when there are obstacles in their way.

Thank you for your vision and seeing this through, Olivia's Bears Team!

Twelve.

October 24th, 2024

Chemo Cycle 12...so close to the end and yet, feels like a year away!

Carson shuts down when he goes in for these 5 day stays and sometimes we can have gentle conversations with him about not letting it get to him but in all honesty - it's even getting to us. 

We just have to stay positive and keep our heads in the game.

And - the CHEST CT WAS CLEAR! So that's the type of vibe I needed to put a pep in my step so now I have to project that energy to Carson to get him moving and out of that bed!

Chest CT.

October 24th, 2024

Routine chest CT at Roswell with and without contrast.

GOOOOOD LORT.

It was truly so stressful the nights leading up to this and I think I slept about 3 hours because scanxiety is really real my friends.

This type of cancer, when it spreads, tends to spread from the limb it starts in directly to the lungs.

So waiting for these results were almost as hard as the night before...and even worse - we have to leave here and go right to Oshei for our next cycle of chemo.

Please God have a clean scan - PLEASE! 🙏

Sixteen.

October 21st, 2024

16. SIXTEEN.😱

Look, I have no idea how I have a 16 year old when I just turned 30 last year...but who knows.😆🤪(I kid, I kid.)

Gavin brings so many laughs to this house. He is an awesome brother and even better son. Even though we have to deal with his random football facts and him rooting for the Ravens when the Bills aren't playing...I truly couldn't be more proud of him!

And while it may have took him a hot minute to truly grasp the levity of what this family was about to embark on...he has shown up like any other 16 year old would in this situation and has grown into such an incredible young man through it all. 

🎈🎉Happy 16th Birthday Gavin!🎉🎈 

We love you so much!

Gifts.

October 16th, 2024

My aunts, uncle, cousin and my mom came to the wake this evening. It was so nice seeing them, even in a hard circumstance such as a wake. It brings comfort while you sit in sadness so to speak. I am grateful they were able to come because it has been too long since I have seen them and received one of their hugs.

My one aunt who lives in Canada and is a master knitter, knitted Carson an adorable penguin pictured above. This amazing stuffed penguin was complete with his favorite colors and the color of the cancer ribbon for bone cancer. She gave that to me in a gift bag before she left this evening to bring home to Carson. Right before bed, he was able to open it and snuggle it right away!

Same for Carson's grandma that came...she gave me a gift bag that her friend had given her for Carson.

Inside was a book about Penguins but most notably - this incredible quilt crafted with squares of ALL of Carson's favorite things:

• Grilling

• Minecraft

• The Buffalo Bills

• Camping

• Soccer

• Penguins

• Legos

And then, a single square comprised of his grandmother's absolute favorite "The Wizard of Oz". That square and some of the quilt can be seen on Carson in the photo above.

Such a sweet gesture and we are beyond grateful for the time and thought behind these handcrafted items. ❤️

Transfusion.

October 16th, 2024

Another transfusion for our boy. 

His counts are just.not.recovering.

I don't know why I don't know what more we can do at home but I have to just trust the nurses and doctors that know what they are doing in these protocols for such a rare bone cancer.

This time was a bit more taxing on my brain if I am being perfectly honest. After we get home from Roswell, we have Bob's grandpa's funeral this evening. My heart aches for my husband, his parents and ultimately, the entire family. 

The closer we get to the end, these obstacles keep getting harder to get through. 

Stairs.

October 11th, 2024

🙌Just another product of PT, folks!🙌

Another testament to the right person(that isn't his parents of course lol) giving him a confidence boost and talking to him like a human and NOT like a grumpy adolescent like some have done in the past with him while in the hospital.

Lookout world because when this kid loses the walker & stairs crutch...he's going to do big things, I feel it in my soul!

(Peep the little bro that is ALWAYS rooting him on and never judging...big bro would be too if he were present at this moment but more than likely would have been behind him nervous that he would fall.)

Socks.

October 10th, 2024

If you have been at the peds hem/onc clinic at Roswell, you may know a nurse named Abby.

Abby is another one of earth's angels.

She understands Carson's anxiousness...she is kind and patient...she is hilarious and relatable. Even with adults!

She truly brings out the light in others and I cannot say enough amazing things about her. She is whole heartedly in the right field and I couldn't imagine this journey without her being a part of it.

Needless to say, she was one of the first ones at clinic to notice that Carson loves quirky socks. In fact, she would come over to him just to see what was on his socks when we would get there, even if we didn't have her as a nurse. 

Well, in true Abby form ~ she happened to see these socks one weekend while shopping and thought of Carson...they are Pickles playing Pickleball amongst other random things. 

💛Abby you are truly a light and a gift! Please do not ever lose your shine!💛🙌 Also - never stop singing & dancing!😎

Chemo Cycle 11 DONE! ✔️

Eleven.

October 10th, 2024

Chemo was rescheduled, again. His counts(numbers/labs) just aren't recovering. 

But we made it, same week at least this time.

This cycle is only a one day chemo treatment now that the "red devil" is done.

Bob said they scored a room all to themselves this time with a bathroom inside of it instead of being in a bay.

It's the little things, amiright? 

This time the only change for Carson is that he is going to take a new(to him) inhaled antibiotic called Pentamidine every 30 days instead of the Bactrim antibiotic that he takes 2x a day on weekends. They feel the Bactrim could be messing with his counts, mainly the platelets, so here is hoping we can get back on track to be done soon!

Full Weight.

October 8th, 2024

Nothing takes the bad days/weeks away better than watching your kids next accomplishment.

Carson has been working with a physical therapist(PT) at home and doing AMAZING things. 

His physical therapist(PT), has been nothing sort of awesome, understanding and caring with Carson.

I truly believe that with the right people surrounding him, he can make huge strides. This guy, has been encouraging Carson and checking on Carson and literally going above and beyond for him. Forever and ever grateful for him and his role in this journey.

I came home from work today and was greeted almost immediately by Carson who "needed to show me something". Him and Bob had these little smiles on their faces and to be honest I was a little nervous.

Carson told me to stand at the end of our hallway and just watch.

He rolled up his pant legs and then proceeded toward me.

HE WAS WALKING! With the walker, of course but full weight bearing and SO PROUD!

This was something we have been working toward and Carson has been SO nervous to put full weight on it after the one time he did so, and it pulled something or felt strange and then he just...never wanted to try on his own again.

But his physical therapist took that fear and completely squashed it! It was so emotional, I just couldn't help but cry!

This takes all stress from last week and simply makes it melt away!

Thank you "T" for bringing out Carson's confidence! #carsonsarmy

Dirt.

October 3rd, 2024

Sooooo that certainly was a dirty and wildly long week...

We had obstacles we didn't expect.

We had stressors we didn't expect.

We had expenses we didn't expect.

And all while we were trying to gain traction from what always feels like, a long chemo week.

I won't even tell you how our cars were in for typical reasons at the shop but then it couldn't just be for the appointment time - NOPE - we had issues that made it necessary to keep them in the shop for longer than expected.

BUT!

Our pipes have been replaced and are in working order now. Gavin is on antibiotics(that they shorted me on at the pharmacy but I got that straightened out) and hopefully on the mend for good. Carson is on his new platelet med sample so hopefully that helps bring his numbers up.

When life gives you lemons, cut 'em up and throw 'em in a drink... then sit back and be grateful that your family is whole and that you get another day on earth with them.

One of my favorite quotes has always been...

"Life isn't about waiting for the storms to pass. It's about learning how to dance in the rain."

The company cleaned up and rolled out around 3:30pm - which was about the same time I was headed downtown to get Carson's platelet boosting meds since the pharmacist at Roswell was able to find a sample again for us because Carson's numbers are awful again.

Pneumonia.

October 2nd, 2024

WELP...it is confirmed - Gavin has pneumonia...and pretty bad too. 

• Gavin's oxygen dropped even more than it had.

• Gavin was getting worse.

• Gavin's urine looked like diluted coca cola (don't forget, we were using urinals in a pinch when the boys couldn't go to the Airbnb or outside) and finally I said that's it - this kid has to be seen NOW!

We put on masks and drove right to Ped's Urgent Care in Orchard Park.

Were weren't even there a half hour and the child was triaged, x-rayed and diagnosed - while I hate that he has such a horrible infection(it was severe) I was so grateful to not have to be in a typical ER setting and the docs were understanding of our situation at home with the sewer but most of all, with Carson and we were able to avoid him being admitted with the promise that we follow up with his peds office the next morning and immediately go to the ER if he gets ANY worse.

They made him down a bunch of fluids and a heavy dose of an antibiotic and sent us home.

One. Day. At. A. Time.

Airbnb.

October 1st, 2024

Now what? Well... I'll tell ya! LOL!

I had a big brained idea (look I am a mom of teenagers with YouTube brains and this is the verbiage around our house, no judging, lol)... for months (maybe years but hell, my brain is shot these days) we had gathered that the apartment slightly across the street was an Airbnb or the like.

This situation we were in was literally dier...so I went ahead searching the internet for all deets!

You would be 100% correct that, in this case anyway, it wasn't hard since there aren't that many legitimate options out there to sort through - it is basically just Airbnb or VRBO.

I found it...reached out and explained our situation.

These owners are top notch! They were extremely responsive, extremely kind and understanding. Now I see why they are always rented out. Reasonably priced, immaculate conditions inside and for us, extreme walk-ability - HA! 

We didn't sleep at the Airbnb it was just the basics like showering, bathing and dishes.

In all reality - I felt like we were camping. When we camp for a long time we only have so much water that our trailer holds so we have to walk down to the bath house to wash dishes or go to the bathroom and to shower. So that's what we did and while I am sure the neighbors were SUPER confused, it was a Godsend and I am forever grateful for their kindness.

I have it rented from Monday evening to Wednesday at 11am. I am assuming our pipes will be flushing in no time and we won't need it any longer than that!

Thank you to the owners of "Bison Airbnb" for the discount and your kindness!

Shift.

October 1st, 2024

Well October...you sure are bringing Spooky Season in with terror.

Update on our sewer in the most layman's of terms...it shifted. It broke. It's shot. It's donesville. Needs to be replaced.

However, thankfully????, my coworker(who lives in the same town) and I were chatting a while back about the incessant mailings we were receiving from the town regarding getting the sewer pipe insurance. Well about a month after we were chatting about it she told me that she looked into it and ended up talking with her home owners insurance and it made sense. Especially for the price, you can't go wrong. Let me tell you what - she was very lucky because just some odd months later - she needed to have her pipes replaced and that town sewer insurance covered it in full! When I brought the news back to Bob one day, he too looked into it and we both decided it is better safe than sorry. We figured out our budget to account for it since it wasn't a ton, and signed up!

Flash forward to one of the most AWFUL years for us, I am grateful my husband and I decided to just get the insurance because YOU GUYSSSSSSSSSSSSSSSSSSSS....we needed the sewer trap replaced along with 20-25 FEET of pipe replaced....and had we NOT gotten the insurance - we would be 100% responsible for! It's a spooky season miracle!

However, getting the insurance on the phone...well, getting a human on the phone, to make arrangements with the urgency we had over here was tough because they didn't seem to care that we had 5 humans in the house that consist of:

• 1 immunocompromised pediatric cancer patient,

• 1 kid in isolation with fevers and a terrible cough,

• 1 kid going to school in the middle of cold/flu/pneumonia season;

• 1 non-remote working parent...

ALL of whom, in no particular order need to:

• Shower, 

• Brush their teeth, 

• Wash their hands every chance possible,

• Go to the bathroom,

• Have clean laundry,

• Have clean dishes, etc. 

Yet - all 5 humans cannot let ANYTHING go down the drain due to the gravity of the situation here...this is certainly not something you can plan for like a snowstorm, etc.

Now what?! 😭