🎗️💛September Updates💛🎗️

Sewer.

September 29th, 2024

Once upon a time, there was a married couple who lived in a house with their dog and 3 boys. 

One Sunday night, they were cheering on the Buffalo Bills until the football game took a drastic turn. At that point, they decided that they should just go to bed and not suffer through another Bills game loss since they still have to get the rest of the household ready for bed and then themselves.

So the wife/mother, we will call her - Jessica, went to the door of the basement where her youngest child, we will call him - Owen, was playing video games. She called down to him to let him know it was time to get off of the video games and get ready for bed. As Jessica was closing the door, she just happened to hear the sound of water. "Strange", she thought to herself, because the laundry was already completed earlier that day.

Jessica whipped the door back open and called down to Owen - "OWEN! What is that water noise?!"  to which Owen replied - "I don't know, the washer I think..."

While running down the basement stairs, Jessica exclaims - "OWEN, THERE IS NO LAUNDRY GOING!" 

To her surprise - the laundry tub was full of water, and LITERALLY  - for lack of better words - alive....splashing water out of it while the sump pump was in a constant running mode/cycle.

Jessica yells to her husband, we will call him - Bob, that is still upstairs during this and says:

"BOB OH MYLANTA THE LAUNDRY TUB IS OVERFLOWING HELP ME THERE IS WATER EVERYWHERE - WHAT IS EVEN HAPPENING - WHYYYYYYYYYYYYYYYYYYYY IS THIS HAPPENING?!?!??!?!?!"

We start cleaning up downstairs, test some different things and theories and decide, we must need the sewer snaked out! Fine.

So, I reach out to one of my very best friends again - another aka earth angel - and she gets her husband, who is a plumber, connected with Bob's number so they can talk. After they discussed the situation, he tells us he can come out to look at the sewer tomorrow and snake it and then we should be good to go.

Meanwhile, Jessica's eldest son, we shall call - Gavin, can be heard downstairs coughing really hard in his room. Jessica masks up and runs up thinking that maybe the stomach virus wasn't ruled out after all. Only to find that Gavin's fever came back with a vengeance and he is going downhill again. 103.1 is his temp and his cough is wretched. He won't eat or drink. His O2(oxygen level) is 97 and his chest hurts. Jessica gets his bed propped up and gets him all settled with Motrin.

Jessica gets downstairs and goes to wash her hands and quickly realizes, this is going to be VERY difficult to get through if the snake doesn't work on this sewer tomorrow morning. 

The rest of the fairy tale, that is 100% true unfortunately, unravels into the worst type of nightmare in a wild series of events. So, buckle up the following days only get more strange and more frustrating...and not a great way to welcome the month of October if you ask me.

Home.

September 28th, 2024

I waited for the call in between checking on Gavin and cleaning.

I had such a rough night with Gavin. His temp was out of control. I did the alternating of Motrin & Tylenol. Constant hydration. Just before it was time for the next dose, it was was really high fevers and nearly vomiting from said fevers being so high. I feel I can safely say, the stomach virus can be ruled out. Thank you 9lb 0oz sweet baby Jesus!

This has to be viral. I hope, I think. Just need to keep up with the hydration, rest and medicating the symptoms. As well as making sure that he stays isolated and wears a mask when leaving his room to go to the bathroom.

We will figure this all out. We always do.

Then, just as I was blowing out the candles at my pity party....my phone rang and they were getting ready (to get ready lol) to be discharged.

My poor sweet husband had to pack everything up AND walk slow and steady alongside Carson with the walker to get to the pick up spot outside of the first floor. I will say it again...my husband is literally amazing and truly just an incredible human being for all he does and in stride all while I am a literal mess. I truly couldn't do life without this man. I sincerely wish I could give him the world!❤️

Instead, I made sure the steaks were thawed out so he could grill them for him and Carson and just simply have a nice meal. Yes, he will grill them because I am pretty sure him and Carson would cackle laughing if I were to tell them I was grilling...but get the things prepped - on it! 

Anyhow, please put your hands together folks because....

Chemo Cycle 10 DONE! ✔️

Illness.

September 27th, 2024

Picture it: Sicily, 1922...it was the worst of times, it was the worst of times.

Tonight(Friday), will be the last night in the hospital for Cycle 10 and the sky even looked angry. 

Or, pretty...I guess it depends on how your day went...as you may be gathering I have a little story to tell you about illness and it makes me feel that the sky was also stressed and angry.

It all started after work and I am on my way to get Owen from school and get a text on my car's screen...it reads out loud:

(Read in the most annoying car voice from 2016 everrrr...and I added punctuations, the letters that are almost always ommitted and capital letters because teenagers don't use those...everrrrr)

"A text from Gavin...I'm home and in my bed (and) super sick with a bucket. Can't find the masks. Can you just come home?"

My high schooler...on a Friday afternoon, in bed with a bucket and super sick. Y'all the kid pukes like a man, I do not have the energy for this today....then my brain spirals with all of the thoughts and naturally - I feel guilty for even thinking I didn't have the energy to clean up puke. Ugh. 

I am supposed to go to the hospital to relieve Bob as early as possible so he can take Owen to his school's "Welcome Back Carnival". I already explained to Owen that he could go to this being that he is always so compliant and deals with every twist and every turn with grace and kindness...all said that morning before I knew what I would be hit with that afternoon.

Now, I have to assess the sickness...

I find our disposable masks, get the thermometer, get my new "New Era" mask from my "Hope Tote" that I was recently gifted at the hospital....start to head upstairs to the isolation unit...lol...Gavin is out cold sleeping. I take his temp - it is 102.2! 

Ugh...my stomach sinks.

And in true worry wort fashion - my brain goes immediately to how close was he to his brothers, classmates, teachers, Bob & I! Then....it hits me...last night, Gavin came and sat with me in the living room for the first time in umpteen bajillion years. We shared laughs, pizza, random stories and watched documentaries past our bedtimes (yes, I have a bedtime, what of it?!) it was lovely. It was needed and I don't regret it for one second... even if my immunocompromised body can't handle whatever it is that may or may not get thrown at me after I am done caring for him, that's a bridge to cross another time. 

Having a kiddo with cancer that has school aged siblings can be rough sometimes but I straighten my Murphy's Law crown and call Bob.

I break the news to Bob that they really should stay in the room as much as possible and wear a mask when leaving if they leave the room just to protect everyone else in case we are all in the incubation phase of whateverthehellthisis. 

I also tell him, I will pick them up tomorrow, in a mask, and at the pick up spot outside when they are ready so I don't bring ANY germs to the floor.

Obviously Bob understands and I now have to figure out how I can get Owen to this Carnival. Luckily one of my very best friends who is taking her son as well (who is Owen's friend, too), can take Owen and will send me pictures. ❤️🙌❤️ #myfriendsareliterallyearthangels

So for now...I am medicating Gavin and trying to figure out what he actually has because at this point...it seems like the flu, but I know Pneumonia is going around schools(hell - counties at this rate) so I need to stay vigilant - not only for him but for our household. 

Carson will be home tomorrow and he will be at his literal lowest, numbers wise, so things could shift quickly if this isn't done safely with proper hand washing and cleaning.

Cravings.

September 27th, 2024

HA! How fitting that I just explained Carson's crazy cravings to you while he is on steroids and then...he goes full fledged cravings spree with Bob. Thank you to those of you that donated Door Dash gift cards because this was made possible because of that!

Pineapple Crush soda...they both loved it lol!

Papa John's Pizza...garlic stuffed crust, with cheese & typical pizza sauce with bacon as a topping. 

And for dessert...Oreos.

Stay tuned for "Chinese Spaghetti" cravings...we have since already lived through & can tell the tale from:

• BBQ chips

• Donuts from Tim Hortons

• Red & Orange Bell Peppers (not yellow & green) with ranch dip

• Beef flavor ramen noodles w/chicken or steak - depending on the day

• Apple slices and caramel dip

• Ritz crackers with peanut butter filling

• Pistachios

• Honey Roasted Peanuts

• Big Macs

• Chicken Nuggets with Hot Mustard Sauce ONLY

This came from a kiddo who would only drink chocolate protein shakes and completely stop eating when he got to the hospital after a few of these long cycles. Calories are calories we are told from the doctors. 

Only a few more days then we can call cycle 10 done.

Steroids.

September 26th, 2024

You know the story with people on steroids who:

• get puffy

• get cranky/angry

• can get "moon face"(round/puffy face)

• can possibly be allergic 

• can have adverse reactions

Welp. Carson is that person with a side of, what Bob & I have playfully dubbed, "pregnancy cravings"...where you crave the weirdest foods at the weirdest times and everything just plain sucks if you don't have that particular food/craving at that time. You may never request it again, you may never want to even smell it again...but if it isn't in your possession at that moment - OH LORT HELP US!

As for his adverse/allergic issues...he has to get his steroids administered over a longer period of time and only half of the dose while getting it. It still does the job that it is set out to do, and they do watch him carefully when it is being administered but it is still very nerve racking. Especially when we were(I say were because our oldest has since outgrown his allergies) parents of a highly allergic kid that we had to be hyper aware of at all times so he didn't go anaphylactic. 

At least he still has those super sweet Carson smiles...that's what I call kryptonite for steroids.

Anniversary.

September 25th, 2024

Bob & I didn't get to celebrate our wedding anniversary quite like we usually do. 

Depending on what obstacle we have that year...🤣...we make or go out to a special dinner. Then, for the rest of the day/evening I put on my wedding dress & Bob puts on his tuxedo shirt then, we take a photo together. Sometimes we forget the photo, but that's ok - everything doesn't always have to have picture proof or be picture perfect.

When I told the hospital social worker, Grace, all about what we do she begged me to show up at the hospital in my wedding dress. Unfortunately, the day got away from me and since I already look like I am moving in for weeks when I show up for my day/night there, I didn't go through with it.

This year's photo will be missed for year 14, but that's ok... we don't need a photo of us in our "wedding stuff" to remember our anniversary or even one to show how long we have been married for...we have the rest of our lives for photos and all of that! 

❤️All my love and so much more to my husband & very best friend, Bob...thank you for loving me and being not only my rock, but our family's rock too. They broke the mold with you my sweet husband and I am excited to spend the rest of our days together! Preferably, forever.❤️ 

Legos.

September 25th, 2024

Nothing Carson loves more than building Legos, as I am sure you have all gathered by now.

I received this photo while I was at work...

What was so special about this one though - is that I tried to get all done decorating for Halloween before he went in and I kept saying silly things to him in Halloween terms. 

So when he specifically picked this one and then sent me a photo of him with it with one of my one liners it just truly made my day!

Ten.

September 24th, 2024

Double digits....I won't lie this cycle seemed like it would take forever to get to (the double digits anyway).

Of course we have an echocardiogram today on top of the eleventy billion other things that needed to be done today (see the post before this on his follow up with the surgeon that happened first thing this morning before the hospital...) and Carson is exhausted. He doesn't really like the echocardiograms either because they are uncomfortable near his port on his chest. 

And...of course my anxiety is through the roof with why they are suddenly doing an echo when I swear he just had one. Bob assured me (he is with Carson this day/night) it was routine but any scan that pops up just gives us the angst as to what they will find. Positivity & good vibes can only get you so far in this world amiright?

No changes for this cycle...except the new antibiotics for Carson to take prophylactically when we leave here. 

Here's hoping for an easy 5 day 4 night stay at Hotel de Oshei.

Ironman.

September 24th, 2024

We had another follow-up with the surgeon today.

Crazy enough - we even got to see what the femur implant/prosthesis looks like. We were speechless. Is it iron? No. Is Carson an Avenger? YES[of cancer]. Sooo the title stays, ohkurrr?!

It is a really cool implant/prosthesis to say the least. It is modular and connects like a Lego head (thank God for doctors that explain things in relatable terms) in 3 separate sections. Then, at the bottom of the implant/prosthesis, it screws in like a corkscrew to the end of his natural femur that wasn't affected by cancer and is secured in place by 5 additional screws. The thought behind the modular components is that if, heaven forbid, it needs to be replaced in the future, the entire femur doesn't need to be replaced ::shudder:: just the portion that is necessary.

Doctor gave him permission to finally put 100% weight on his right leg at this visit too! YAY! PT will be so much easier now.

Now, we are off to chemo cycle 10...

Transfusion.

September 20th, 2024

Transfusion #... I.lost.track.

No but seriously, I don't know if I even documented all of them at this rate. Ugh.

Anyhow...we are struggling with platelets these days and Carson's doctor is going to try to get him on platelet boosting meds so we can avoid these transfusions after chemo every.single.time and get him feeling much better.

Until then...we stay positive and get him healthy before the next round.

FortyTwo.

September 17th, 2024

Happiest Birthdays to Carson's Dad - Bob!

I could write a book on this man but you're here for our Carson...

Just please know this - he is without a shadow of a doubt the only reason I can get through any of this.

Nine.

September 10th, 2024

Oddly, this cycle should have been a two day cycle of hell err chemo - at the hospital. One overnight stay with 2 days inpatient.

Then, the residents went on strike for our originally scheduled chemo (that should have been on 9/3 & 9/4) so the doctor asked if we would be ok bringing in Carson for outpatient chemo for 2 days, we just would have to keep an eye on him and keep him hydrated.

Hydration and nursing without needles PUT ME IN COACH!

Then, his counts just weren't where they should be so we struggled with that and had to delay chemo to today.

Bob arrived early with Carson and then they even ended up getting a room with a bathroom so Carson didn't have long walks with the walker to go pee...especially when he was already exhausted.

Carson came home and did great through the evening and overnight. 

The next day they went in early again and were home by the afternoon. This was also the last scheduled "Red Devil" chemo so he is going from the "V/D/C" Chemo to just "V/C" for the next one!

Chemo Cycle 9 DONE! ✔️

8thGrade.

September 5th, 2024

First day of 8th grade for Carson.

He seems to be staying consistent with what he wants to be when he grows up...I have been doing this since PreK and the past few years he is still staying on the chef track.

I am here for it too...he is a great cook! 

He keeps "warning" me that when he can walk on his own he is cooking all the things, hahaha!

I truly hope this is a fabulous year for our love. He just wants to be a "normal"(sorry, but no teenage boy is normal let's just be serious ha! Even though, I am still wondering what normal even is anymore so who am I to judge!) teenager in 8th grade. SO we are going to help him get to that point in whatever way we can.

Happy First Day of School Carson - YOU GOT THIS!

Thoughts.

September 4th, 2024

I am not sure if you can see it is in his eyes, but Carson had a lot of things that he was thinking about. 

One of which was how he was going to do with starting school differently this year (and that would start tomorrow morning).

He did his best to not feel overwhelmed. He also was an amazing cheerleader for Owen who was excited but nervous for his first day tomorrow as well.

Here's to a slower than normal start to the year for him on his year of honors classes and high school classes.

I just know that he will do great with the team of teachers at his school helping him out!

September.

September 37th, 2024

September is Pediatric Cancer Awareness Month.

As a cancer parent though - we have to always stay aware. Every.single.day.of.it. It gets exhausting and annoying and can make or break your whole day sometimes. Same holds true, obviously, for Carson.

I am sure you can understand, this life isn't easy, nor does it EVER make any sense. It is sad that we treat this cancer like a taboo health topic. Yet, everyone knows that pink is the awareness color for breast cancer...it gets pushed out everywhere. Even brands will change their social media logos to pink hues.

When do the kids matter?

When do we have enough awareness where there is funding and allowance so kids, like Carson, aren't getting medication denied when a doctor deems it necessary to make counts for next rounds? A medication that can help him fight a rare bone cancer disease together with chemo. 

It is so frustrating and I just wish the world would start recognizing it like they do for everything else.

So in September - we wear gold to recognize those who fight, those who lost this horrific fight and those who stand behind them forever through it and after it.