🌻May Updates🌻

Firsts.

May 16, 2024

While going through all of this as a family...we still have things for our 2 other boys to celebrate and be present for.

Owen had his very first band concert tonight during his very first Fine Arts Night(he always had something else happening during the ones prior) they have for the school where the kids have their art work displayed in the hallways. For weeks prior he had been so excited talking about his part in the concert. He and Carson would talk at lengths about it. Bob and I knew we couldn't miss it as parents, so we enlisted Bob's mom to sit with Carson at the hospital for us. The week of, Owen kept expressing how sad he was that Carson was going to miss his first band concert...so I showed Carson how to do a video call through our phones and BOOM - Carson was able to be present for the concert all while receiving treatment in the hospital. What a world!

BUT - in order to make this work we have to make a plan...

• Bob's dad drops off Bob's mom at the hospital.

• Bob's dad takes me home to get ready to go to the concert.

• Because Bob and I switch every other night at the hospital - Bob's dad then attended the concert with us and after, drove Bob back to the hospital to drop Bob off and pick up Bob's mom.

As we continue through treatments and continue through this life, I will always be grateful for the support system we have to be fortunate enough to keep things as "normal" (as we aren't😜) as possible.

Bills.

May 15, 2024

As if meeting adorable dogs wasn't enough therapy....How about...dem Buffalo Bills?!?!?!?

Ya'll don't even understand...Thank you to Chase Claypool, Ryan Van Demark & Tommy Doyle for making not only Carson's day, but my husband's day also!

What's funny is ~ we just had a conversation about how it will be Dad at the hospital when the dogs and Bills come! Here they are!

Sidenote: Carson is having some rough bouts of nausea and exhaustion...so sleep and anti-nausea meds have been plentiful when he can. He is really feeling down and simply over it at this point. 

Dogs.

May 15, 2024

Therapy dogs are a common thing on this floor at the hospital. And rightfully so. They generally come around on Wednesdays but Carson got lucky TWICE! 

They even have trading cards that they give to the kiddos to remember them by(Think a baseball card except this one has stats about their favorite toy, what breed they are, age, etc.). 

Carson got to meet Faith(pictured above) at the beginning of this stay and Obie at the literal end on Saturday. Obie is a huge German Shepard that is a giant lovey dog. He walked in when Carson was being wheeled out to go home just outside his door. 

I will tell you that I have never met a single person who didn't light up in a hospital when they saw a friendly dog walking down the hall! Even my dentist has a lovey golden retriever - calms me right down! Can we just make them mandatory in all stressful places?! 

Cycle 4.

May 14, 2024

Chemo. Cycle 4.

To be fair - I thought we were on cycle 3...so...yay? I have a question mark there because I am currently in the stage of struggling every other day with the fact that we are just supposed to be ok that they are pumping our child full of chemicals to kill a cancer that they barely give funding to research and also give the same damn protocol that they have used for this cancer since the 1970's...BUT.I.DIGRESS..............ugh. I honestly don't even have words for how this feels. In all ways, always.

We went in hopeful for this 5 day stay...but we should have known better, I guess.

When we arrived at clinic - quick refresher - we have to go to Roswell Pediatric Clinic first, then be admitted at Oishei Children's Hospital. Carson was accessed per usual and offered a menu to pick out breakfast because...the floor was full...the pediatric hematology/oncology floor was full. 

Let that sink in a moment...

...

...

...

Sink in yet? About 10 rooms were FULL.of.kids.

We waited an hour or so then were told our room was ready because a kid was discharged. 

Yay? (See above if you are confused at this point on why I used a question mark.)

Then, found out our love will need another blood transfusion throughout this stay. 

The good news? We won't be using the steroid that seems to cause reddening of his face, extra emotions, lack of eating and bloating. They also seem to think it was what caused the pancreatitis. 

Let's see how this goes.

WHOA!

Every.single.month/day.he.receives.a.package.card.or.note, 2024

This photo was captured during one of Carson's epic unboxing of a gift off of his Amazon Wish List that Carson has had the opportunity not only from these amazing humans who sent this but - from ALL.OF.YOU.

I swear this face is made every single time...no matter how big or how small...every.single.time.

This 12 (almost 13 year old!!) year old boy is genuine and kind. 

He is grateful for every gift, every card, every note involved. He reads them, he takes the time to ask about you if he doesn't know you, too! He asks about how we know you, how you are doing currently...it is humbling, beautiful and honestly makes us feel so proud of our parenting and the way this boy has taken on this stress of cancer and YET...still shows how caring and kind he is.((oh yes, you are clearly reading that I am patting myself and Bob on the back - I am proud, dammit!)) 

Momski.

May 12, 2024

This Mother's Day is...just...different.

You might be thinking - "well, yeah Jessica, obviously"...but this is more so because we were isolated, per se, due to low blood counts. Especially the white blood cells (his ANC number is what they follow) & his low hemoglobin level. 

White blood cells - for those of you who weren't aware and likely have a plethora of them - help fight infections, viruses, etc. We can't see them. We just know they are there. Bloodwork confirms as such. Your spongey bone filler aka bone marrow, pump these suckers out(along with red blood cells and platelets) like the ads on your favorite streaming service. However, chemotherapy drugs can cause a swift decline in these which makes the bone marrow work harder to reproduce these and other infection fighting cells. Sometimes though, it just doesn't work as planned. 

And (not so)fun fact - when these counts are down - we risk losing a cycle of chemo and having to wait another week to receive it.

SO! When your child has low counts, you have to be smart about who they can and cannot be around, as well as the places you can and cannot go. It is already nerve racking that between myself and Carson's two brothers - we are in 3 different school buildings- and two of those elementary school buildings are on opposite sides of town! Not to mention you truly don't know if you're feeling good until it's too late...one minute you're feeling good not even feeling one iota of a symptom that you could be super sick and the next you're declining rapidly with a fever - I've been there before and I am sure you have, too. 

Carson's blood counts were very low. So this Mother's Day...we slept in, ate my favorite Paula's Donuts breakfast item(look, if you've never had Paula's Glazed Cinnamon Donut - are you even living?) they each got me a stupidly hilarious card, new sneakers and we hung out together - at home. 

And you know what? It was perfect because at the end of the day, I spent my whole Mother's Day with the people that made me a a mom anyway.  

Grillin'.

May 9, 2024

The Pit Boss Griddle...this is something Bob and Carson dreamt about, chatted constantly about, planned meals around, etc. Waiting on a nice day along with a day that Carson is feeling good enough to get it out and get cookin' on it!

When the day finally arrived...it was lunch time, so naturally - they took out steak. They seasoned their own steak exactly the way they like it. Carson was feeling good enough to be on the grill this day and boy oh boy did he love the feeling. 

How do I know? Well, I heard about it for hours after I came home from work and they even continued chatting about it over dinner. 

The way cooking/grilling/creating makes this kid come out of his shell and feel so good - is absolutely fascinating! Not just that but makes Bob and I feel like whole new people knowing our child is doing ok...even if it is just a small block of time. 

I posted that photo on Instagram and tagged Pit Boss and you would have thought it was the most famous person when they commented emojis right back about it! Thank you Pit Boss for creating a smile on this kids face - not once, but twice!!

Regen.

May 8, 2024

If you don't have kids that play video games(by the way, soooo...what's that like?) you may hear things like "OMG just take this med kit - you'll regen!" or "Bruh, I need to regen just stahhhhp!"...if only in real life(for all you youngins...that would be IRL) it was that simple.

Our nurse was states away to watch her son graduate so we had a couple of new nurses this week to find out what was going on with Carson's levels after our bout of pancreatitis. I knew that small sips of fluids and small bites of food - frequently, would put my baby on the mend. And thankfully - ya girl was spot on! His levels recovered beautifully and we knew we would be ready for the next cycle as it came up.

But with his levels showing the pancreatitis has healed (his pancreas regenned? lol!)...also came the news that his other levels were low and we were going to need to be smart for the weekend...Mother's Day weekend. (First the rain - every.single.mother's.day and now this?! AY YI YI!)

Pancreatitis.

May 2, 2024

Being placed across from the nurses station gave me hope...but then realizing we are placed next to the ambulance bay(1 star - do not recommend), the things I saw, the time spent and the sheer fact that they asked me...THE MOM - THE FAINTER - THE COMBOBBLED HUMAN IN FRONT OF THEM...what gauge needle to access the port.

My response..."ummm...I am so sorry I don't feel comfortable with answering this right now - can you call upstairs to J12?" (you know, where he literally is admitted to every other week for chemo?! With the guys and gals that do this on the regular?!)

The nurse that comes to our house to access his port texts me to be sure we are doing ok...I ask her in a panic what gauge...she replies with ".75"...so I quickly tell them that because as I stated when I began this - TIME IS EVERYTHING.

Y'all in all reality though - why.are.you.asking.me?!

"Oh! Ok cool, yeah I looked in his chart and didn't see anything." Random Doctor/Resident walking us back.

DO BETTER KALEIDA. There, I said it.

Why why why why (rinse, repeat)...is this not one of the FIRST things in his so called chart? The kid is here in this literal building, in this hospital system every.other.week.

D-O-B-E-T-T-E-R.

Anyway...from there on out I was nothing short of disappointed. And yep - I am saying that right here too. If you know me well, you know I don't burn bridges and you know I wasn't a jerk. You know I treated everyone I crossed with a smile and full fledged kindness, even when I didn't receive the same. You see - I get that on the ER floor - nobody is there to make long term relationships. I also get that I have no idea what just happened to any single one of them during their shift that they just aren't processing ok. I also fully respect every single individual on every floor of that building doing the unthinkable, the difficult, the irritating, the hard and the ugly things...everyone including but not limited to - child life specialists, nurses, doctors, EMTs, therapists(of all aspects), technicians(again, all aspects), cleaners, etc. Nothing but FULL RESPECT.

However with all due respect - come on now - what are we actually doing?!

A pediatric cancer patient with a fever after receiving chemo and a blood transfusion is put through that amount of waiting with illnesses coursing through the halls, the filler and the passing of the buck. Literally abysmal.

But still....I advocated. 

And still...I was treated as if this should be considered ok, normal or par for the course.

Maybe take a quick second to sit in the hard plastic chair I sat in for half of a day while being ignored....wear my cancer parent shoes....experience this through my eyes; as a literal newcomer in the "Bad Luck Club".

But still...yep, you know...I advocated, but this time I saw how far my kindness was getting us and I got a little more stern. Mom voice came out and magically things started to move along. Now we at least were at a turtle pace as opposed to the snails pace.

I watched all the labs that they claimed they were still waiting on come through on my app.

I called it hours prior to them finally coming to tell us what they "think" and to order yet...ANOTHER test.

Then...we waited some more and got told that we were still waiting to hear from X Y OR Z at that point.

Finally, bless the heart of the resident that had no idea she was getting a mom that was officially overtired, disappointed in the care and action that was received for the last TEN HOURS, was shivering from not having sleeves and whose ass fell asleep 4 hours prior...she came in and I basically told her we are being discharged and we are done waiting for this game of charades to play out. She also confirmed what I already saw in his bloodwork hours prior, it was acute pancreatitis. Then she said the nurse would get the paperwork and we could go home.

But then again...I still advocated and I then HAD TO ASK if he was getting de-accessed. She wasn't sure. WHAT?!

So again, I had to tell her he needed to be de-accessed and hopefully someone was here to do so otherwise please call up to J12 and have them take the elevator down here to de-access him.

Thankfully the nurse knew how. Then she handed us paperwork with vague care instructions and sent us on our way.

Then we found out that we couldn't get to the tunnel to ramp we parked in and would need to go INTO THE WAITING ROOM of the BUSY E.R. to ask for an escort from Security.

That man at the security desk was placed there for all the best reasons because he was the kindest soul. Walked slowly with us. Told Carson he would pray for him and the family. Waited while I got the parking ticket all set. Held the door while I tiredly steered the wheelchair to the car. Held the door for Carson and helped to be certain he got in without skipping a beat. Then politely told me to be sure I locked the doors while he was still standing there to be safe.

Then, watched as I backed up and made it down the ramp. A literal angel. The ending I didn't realize I needed in a night of crazy and disappointments. 

And from here on out...we will be sure to learn from these tough moments. To do everything to plan for these moments. And grow. And continue to be Carson's biggest and best advocate.

Fever.

May 2, 2024

Just another Thursday 'round here...

• 👨‍💻Dad - Working remote from home. Writing code. Being amazing. (Seriously, y'all - he must be protected at all costs!)

• 👩‍💻Mom - Working in the school building that she is assigned to. Likely fixing technology things and hearing random kid stories. Wishing she was on a beach, probably. 

• 🧡Gavin & ❤️Owen - At their perspective school buildings. Doing school things. 

• 💙Carson - Hydrating like a boss...all the while trying to satiate his random food cravings.

• 🐕Maisie - Being lazy. Sleeping on the couch at Carson's feet or pretending she is pouncing on a squirrel in my garden.

Until...

Bob (Human that must-be-protected-at-all-costs aka Dad...just in case anyone lost track who Bob is) calls my cellphone at work to tell me Carson spiked a fever and has been complaining of a stomach ache.

Ok, ummm....  <----said that more times than I care to admit but HI I am only 30 days in everyone...go easy on the newb.

Also, I am pretty sure I spun around like I was chasing an answer(or my proverbial tail)…then, went to my office to take a second to think (or cry but - photo proof or it didn't happen) and proceeded to text our visiting nurse the situation. In true Jessica fashion - I made sure I had removed some ducks/squirrels from a rave and put them into rows, you know, just in case I ended up in the hospital for days. #typeaproblems

Finally, getting into my car driving to get Owen from school...the nurse texts. 

She says - nope do not pass go, do not collect $200...

Not really - she actually said they contacted the clinic (aka Roswell docs) and they advised that you need to go to Oishei right now...Roswell clinic will call ahead so the Emergency Room knows we are coming.

Wait...whaaaaaaaaat? Emergency Room? 

Noooo.

Nope. In fact, I would like to raise your Emergency Room idea with a good ol' fashioned hell-to-the-NO. 

No, you see, we don't do that. We cannot do that. There are germs there beyond measure. Seriously, why do that terrible idea when we have people we rely on at Roswell or on J12 at Oishei that know the situation, that know cancer, that know Carson...that know all the things.

SO! After I finish having a pity party complete with a denial dance...I put on my "brave mom face". (Honest to God, let me be really real with whoever is actually reading this...I am tired of wearing that axiomatic brave mom face...my heart is so tired FOR this child and some days I am tired of it all periodtttt.) 

I call Bob to break the news to him and ask that he puts the lidocaine cream on his port because we know he will have to get accessed at the ER and we need it to be numb.

I pack a small bag for us that I dubbed "keeping off the admitted train" - my thought with that was, if I packed overnight clothes, we would get sent home quicker. If I didn't pack anything, they would admit us so I could sleep in jeans. 

It's just science, people. SCIENCE.

Anyhoo...what happens next is LI-CHER-ALLY bananas....please go to the next post above.

Transfusion.

May 1, 2024

All is well that ends well.

Or the so the saying goes. 

Beside myself to say the least...my baby was given a blood transfusion because his hemoglobin was low. All went ok and without incident. He was given day 2 of VDC Chemotherapy, cared for beyond measure, hydrated and then discharged. THANK GOD.

He is home and doing ok. Also - cried SO many happy tears over being home. Literally bear hugged every person that lives here and he was only gone for an overnight stay. My sweet love.💛

I must say though, something is off...he looks puffier than I have ever seen him. The redness in his face is...different. He claims he isn't nauseous, just has a tiny stomach ache.

I asked multiple times if this was normal. 

Assured it was fine and told that the reaction to the blood transfusion would have happened within hours of the literal transfusion.

So, perhaps then, it must be the sheer thought of a blood transfusion clouding up my judgement and brain, right?

Well...ok...then.

Chemo Cycle 3 Done✔️