🐰April Updates🐣

Chemo Day 3.

April 30th, 2025

The pain is subsiding!!! This is such good news!!! 

He is walking around more and sleeping in his own bed tonight! (His choice!)

He hasn't needed any pain meds and is starting to feel better about his chest port. His belly is aggravating him so Angel, his appropriately named nurse, along with Julie, made sure he was able to get Prilosec to help with his belly as he was never on a med that helped his belly pain for lack of better words. WHOOOOHOO!!

Every win is a huge win right now! So maybe antacids aren't your win - but to a GERD sufferer like me and a belly pain kid due to chemo - this is WIN-INGGGGG!🔥

Whatever it takes, no matter what!

Chemo Cycle 1 - Day 3 - DONE✔️

(Day 4 & 5 will be in May 2025 Updates)

Chemo Day 2.

April 29th, 2025

Getting used to this new schedule is rough. Especially when we are all so very tired and still working. 

Carson is napping a lot and still in pain, I truly hope this chemo kicks this pain out stat! He deserves to be somewhat normal again!

We now have to give a chemo pill before we leave. Then, only one IV chemo for these next 4 days. 

When we get to clinic, they will start the IV anti-nausea meds with the steroid med that acts as a anti-nausea med too... which, if you were around for the first diagnosis, this was the steroid med that Carson's body DID NOT like and caused ultimately ended up causing pancreatitis. 

But when we tried to NOT give the steroid med that helps with the nausea, he was throwing up constantly and feeling wretched. 

Thankfully with the team of amazing docs & nurses we encountered while inpatient last year alongside his amazing oncologist - we quickly learned how much his body CAN take. We now have it slowly administered while "watered down" with another anti-nausea med (that also works to protect his bladder), along with Zofran that is pushed through his IV (and that we give in pill form at home every 6 if needed) AND a scopolamine patch every 3 days behind his ear. It ain't easy being on chemo y'all.

But again - Whatever it takes, no matter what!

Chemo Cycle 1 - Day 2 - DONE✔️

Sleep.

April 28th, 2025

Pain is still prevalent. Sleep is minimal for all involved.

Since Carson is having trouble using his cane and doing stairs without being in a lot of pain. We decided that he would sleep in our bed with me and Bob would either sleep on the couch or in his bed.

It was a rough night being that we both toss and turned and naturally, I heard every single breath and then when I didn't I startled myself awake like he was a newborn baby that I needed to ensure was still breathing while sleeping on pain meds.

Sometimes I worry myself so stupid but I digress...

When we both were so exhausted, we managed a few hours of straight sleep. Then it was off to chemo the next day.

This chemo cycle will be 5 days on, 2 weeks off then another 5 days on.

All while we wait for results on what this cancer is AND for the trials to come in with their results from his tissue samples they were all sent.

Chemo.

April 28th, 2025

Part 2 ~ Chemo Begins...

We are on a second line of chemo treatment since they find that the same chemo from before just doesn't cut it for relapse. Especially being as serious as this one is.

We are, however, starting with ONE of the chemos we had before along with 2 other new ones.

And who are are we greeted by when we get wheeled in that takes our stress level to near zero?

Nurse Abby! 

Carson finds a sense of calm with her, probably because she is very go with the flow like Bob is and is silly like me but about 60 years younger than me. 😂

They ended up giving him low-dose morphine because the pain was increasing in his chest and still in his back. Which then, thankfully for his sake, helped him get some much needed rest in the dark.

We did it - well, he did it all. We just were the support squad. We will continue to be his support squad through it all. Whatever it takes, no matter what!

Chemo Cycle 1 - Day 1 - DONE✔️

Surgery.

April 28th, 2025

Remember the amazingly wonderful, incredible, super duper, fantastic - Child Life person, Tara, who came to see Carson on Friday for his biopsy?

Guess who showed up at Oishei bright and early as we were nervously getting situated in the holding PACU room? TARA!

I nearly cried, not because I didn't know she was coming to see us - because she did tell me, but because Carson lit up when he saw her like you could tell she took his blood pressure down at least a good 10 numbers on both sides of the line - ha!

She asked him if he had any questions, went over the process again to be sure he was aware again of what would happen, made sure he had his smelly stuff for his mask to fall asleep with (since anesthesia smells like sharpie markers, they give the kids smelly ChapStick to rub on the oxygen mask before they count up to fall asleep and THEN start the IV on them...SO wonderful they think of everything!) and calmed my nerves as well when they wheeled him back by walking to the waiting area alongside me. What an absolute stellar human! 

Tara is someone you will never forget. In fact, she calmed Owen's nerves 4 years ago when in the emergency room there! Brought him PJs when he threw up the CT contrast they made him drink on his clothes, brought him a cozy blanket & stuffed animal and even offered to bring an iPad to play games, watch shows or movies if he needed it.

He came out of surgery and was heavily medicated due to being a bit sore from his port placement being in the middle of his chest and causing pain in his breastbone. Then Tara came in AGAIN to make sure he was doing ok waking up and brought him choices of blankets for she wheels him over to Roswell.

When it was time to go over to start chemo at Roswell Pediatric Clinic, Tara took us via the back hallways through Oishei then through Buffalo General Hospital to another hallway to Roswell... all the way to clinic. I was too busy being amazed by the connections to take a picture but wow! So neat that all of this connected...the only thing that we agreed would make it cooler, is if it were underground like a secret tunnel! HA!

Part 2 is above when Chemo starts...

Biopsy.

April 25th, 2025

The amazingly wonderful, incredible, super duper, fantastic - Child Life person, Tara, came to see Carson at Oishei because Emily(the equally fabulous Child Life person at Roswell Peds Clinic) forewarned her that Carson will definitely need some fun distraction before undergoing anesthesia for this biopsy. 

And distract she did...so, so, SO wonderfully.

She wheeled in an Xbox and asked Carson all about Minecraft as she recalled him last year making such a cool light up dance floor among other cool creations he made while waiting for surgery. Brought him in some new stress balls. Then asked him for some advice on new games kids might want to play. Then when he woke up, gave him a choice of Door Dash or Tim Hortons gift cards so he could choose what he wanted to eat or drink since she heard he wasn't really feeling like eating or drinking lately due to being sad and in pain.

I swear we among some incredible earth angels as much as I hate this nightmare, they are the light that keeps my heart beating on days when I just want to crumble.

Thank you Tara & Emily for your kindness and always having my dudes back! I will never ever forget your kindness!💛

Update on recovery:

Carson wasn't doing so well sitting up OR being able to get out of bed. They had to dose him with some heavier meds and keep him a bit longer to observe. Since that meant we were up against the clock, Bob left us to go pick up Owen from school and luckily Gavin didn't have work that day, so Bob dropped off Owen with Gavin at home and then came back. He was able to wait for us at the door so Carson could be wheeled out. My poor dude can't catch a break! Hopefully this weekend is easier on him but the angst of port surgery and chemo starting Monday all at once will prove a mentally challenging weekend I bet!

Ultrasound.

April 24th, 2025

Day 143876402348768375837465873459835984390832087584362347543 of pain.

Carson had a vascular ultrasound today for his port surgeon. From my understanding of it, they will looks at his carotid artery and the rest of his chest and neck veins to ensure there is proper flow and determine if everything is healed from last time.

Bob went with him. He said he asked the ultrasound tech to turn off the heartbeat sound because it was creeping him out.

When I got home from work, I asked him how it went and he said:

"Ugh, mom, the creepiest thing happened during my ultrasound. The lady turned on the sound of my heartbeat as she was scanning me and it was so gross and creepy I couldn't take it anymore so I had to ask her to turn it off but the best she could do was turn it down it was creepy!"

I just love this child and his little "icks"! 💛

Next Steps.

April 23th, 2025

Another day of extreme pain. We have an early morning MRI of his scapular region today with and without contrast.

Then, immediately following the MRI, he has a CT of his chest, head & brain because his headaches won't go away either. UGH.

After those are done, we will be meeting up with Bob (who is getting Gavin off to school & Owen on the bus) with his oncologist at Roswell Peds Clinic to go over what our next steps are.

We arrived at Oishei first thing for a 7am MRI. Carson was turning as white as a ghost as we were walking down the hall. I tried to comfort him and make sure he knew this wasn't anything crazy town USA to worry over all while hoping his medicine kicked in by the time we got down the hall.

As I was signing in, Carson threw up from nerves and pain while sitting in the waiting area. It wasn't much since he was NPO(nothing to eat or drink after midnight except for sips of water with meds if needed.)

I will spare you of the rest of the story but basically - a lady audibly gagged in the waiting room, everyone moved at a snails pace to help me get items to get him cleaned up, all while I was holding a public hospital's metal garbage can(if you know me and touching public garbage cans - OH MY GARAGE -this is bad word central for me but mama bear checked in and gagica checked out) and consoling my child in pain who is extremely nervous.

FINALLY we went back and got a sink to get cleaned up then the whole MRI & getting a vein for him was another feat in and of itself but again, I will spare you those details of the multiple wonderful humans that came to his rescue.

The CT was done by Ashley #2 of 4 (Ashley #1 of 4, is a long time friend of mine.) and she is always a good consoler of Carson. Carson truly enjoys common faces and calm demeanors when getting left with them to be scanned and I nor Bob can be there.

When Carson and I were done at Oishei, we met up with Bob at Roswell and learned of the following:

• Carson will need an Ultrasound for the surgeon placing his port tomorrow.

• Carson will need a biopsy on Friday of his Scapula(shoulder blade) so they can get tissue to send to multiple hospitals/labs/clinics around the country;

• Port (re)placement will happen on Monday then we will start second line of chemo immediately after his recovery discharge;

• Chemo this time around will be done outpatient as much as possible for not only Carson's mental health but the rest of our family's as well and NOT EVER because of the incredible people on J12... Carson just truly shuts down when he gets admitted and we need him at his best. Same for Owen, Gavin, Bob and I... life is different when you are home in your own bed with food and ability to run to a store for a craving of his, etc.;

• Once we hear back from a clinical trial and their promise of disease killing for lack of better words, we may need to leave out of state for weeks to months on end - which may mean that Bob and I need to swap on and off to stay sane and keep our other 2 boys on somewhat of a normal life schedule;

• Fundraising will be pivotal for us due to the amount of traveling that may have to occur.

They have increased his meds to make him comfortable but all we can do at this point is wait until chemo on Monday next week to see if it takes the pain away right away like it did last time. Which, in this case, could be very promising since it completely killed his tumor area on his femur within months.

Easter.

April 20th, 2025

Another Easter with unknowns and scary thoughts.

Trying to save face for the other two boys that now have to live this life.

Another holiday that will likely be the last before we cannot be around family due to germs.

The entire weekend we cried, slept, cried and just tried to pull it together for Carson's sake... but it was SO hard. I kept thinking of the worse case scenarios and worrying about what our life this upcoming year looks like.

I am tired of smiling and being social when my heart is breaking into a million pieces... all over again. His little voice begging for it to stop, go away or to sleep until next year just guts me and Bob.

His family kept it real around him though, business as usual per se. We needed it. He needed it. The other two boys needed it.

Here we go to this horrific week of more unknowns and appts that may or may not cause extreme heartbreak and more emotions that I have never felt in my whole life.

If you pray, please pray. If you simply try to send good vibes to the world, please send them ALL. If you don't know what to do, please know you aren't alone because even Bob and I are feeling restless in the fact that we cannot help. We can only sit and console him and, of course, each other.💛

Relapse.

April 18th, 2025

The doctor called. 

But... I already knew... I felt it since I woke up that morning. I felt it as I drove. I suppressed it multiple times. I cried just as many times. When they took him back I choked back the tears telling my brain ABSOLUTELY NOT A RELAPSE!

After we got home... lack of patience got the best of me.

I checked the portal for an hour and then the results were in.

Then, I looked at the portal results probably 50 times and tried to make it say something else. Tried to make the words "recurrent metabolically active metastasis" say ANYTHING ELSE.

I still remember leaving Carson's side on the couch feeling like I was floating and wanting to vomit. Hardly remember how I got down the basement stairs and to where Bob was working... and nearly collapsed in tears. He didn't even need to ask why, then he nearly collapsed in my arms and we just sat there and we sobbed.

We just barely got through the last one unscathed. How were we supposed to be "strong" enough to get through this time and manage to convey to Carson that he needs to be in a kickass mindset again? 

I am not even really sure about what the doctor said on the phone. I do remember that she was just as shocked at the results. That she said without saying it, this is really bad but we will do everything to get you guys to the right spot to complete this treatment and win again.... and for good. She has always been that doctor. I have complete confidence that she will ALWAYS be that doctor. She means what she says and says what she means.

We are going to get through this come hell or high water... or as I told Carson and just felt compelled to keep repeating:

Whatever it takes, no matter what!💛🎗️💪

PET.

April 18th, 2025

His pain has gotten worse.

It is as bad as it was with his femur when we crept closer to the cancer diagnosis.

I have never wanted something my gut felt to be SO WRONG in my whole life. 

Please God I need this to be fine for him. Let this be a pulled muscle and he is just overly anxious like the rest of us.

PLEASE!

He cannot go through this again...

Breathe...happy thoughts...it's going to be fine...it has to be...right?!?!?!?

PartDeux.

April 6th, 2025

I am not exactly sure how it all started but like many things, us parents just roll with it.

Carson has a Minecraft video game server with a bunch of his friends on it. SO one of the moms...we will continue to call her V.I.P. because that's basically her initials...she set up the server to gather at the movie theatre to experience Minecraft as a server group.

Carson almost didn't make it. He was in so much pain in his shoulder and it was equally killing my momma heart.

Medicine and ice packs on the way to the theatre and he happily made it through!

Thank you to V.I.P. for organizing the memories! I was happily a supervisor 10 rows ahead on my date with V.I.P. - lol!

(Our kids were SO well behaved even after the older teens made sure to pull all the TikTok trends out - minus the chickens and food throwing, thankfully!)

Minecraft.

April 3rd, 2025

"As a child, I yearned for the mines..." Steve. via The Minecraft Movie.

Or so the movie says. We went and saw "Minecraft" the night BEFORE opening night. 

Bob happened to check to see if we could get tickets for opening night and managed to get tickets for the night before, so we went ahead and got great seats and enjoyed family time with Carson who absolutely lives for Minecraft!

I will tell you, though, that I need to play more Minecraft to truly understand it all but to hear him gasp and softly chat with Owen about the movie made my heart swell!

Smile.

April 1st, 2025

So - we decided to wait at the clinic to get results, which we were told, could take a little longer than normal.

The Artist in Residence, Brittany, came in and wanted to try out her new art supplies she received. It was a toothbrush head that vibrated but turned into a bee!

Carson loves art and robotics - so why not give it a shot!?

The laughter was medicine in and of itself! I mean, look at that smile?!?!?!

I truly love this clinic, these people, this feeling of love and hope.

I just don't like being here for the reasons we are here.😔

Pain.

April 1st, 2025

The pain was growing.

The tears were flowing.

Which meant, we were going....to Roswell.

We went and got an X-Ray of his shoulder because it was increasingly getting worse pain wise. So, we sent a message to Roswell and they got him in right away.

To say we were on pins and needles is an understatement. The man you see above, does everything in his power to make me feel calm but I could feel the sense of anxiety from him today. It was strange... but familiar. It felt like April of 2024. The more I thought about the way it felt... God willing, I am wrong!

Now we are on our way downstairs to clinic to see if they want any further tests and to see if they have the results.