Horsing around…

Hey fam! Dropping in for a little update. Been up to no good, as usual, but have literally been “horsing around”. Don’t believe me?? Scroll down⬇️

Pet therapy got a liiiittle more interesting last week. Meet Angel. For all those wanting to duplicate her ootd, it was on point…shoes - Build a Bear, vest - Gucci, harness - SHEIN…

Okay, back to business. Where did we leave off? I had a PET scan a couple weeks ago and those scans came back looking pretty good. If you aren’t familiar with these type of scans, they inject radioactive sugar before the scan and it “lights up” where there is activity. If you recall, my first one lit up where my tumor was because those were active cancer cells. It also lights up around your heart, your brain, etc. This go round, it did not light up where my tumor was located because well, the chemo is doing it’s job! The surgeon also “pulled” most of the tumor out when I had my second biopsy. So all in all, great news! 

Even though we got good news from the scans, my doctor still presented my case and updated scans to the tumor board on October 2nd. Taking ALL THE THINGS into consideration, they made the decision that they still wanted me to undergo some radiation. They will probably zap the “tumor bed” real good and the pleural space where my tumor was located. 

They don’t do pediatric radiation in Baton Rouge so we will be traveling to St. Jude in Memphis for that. Everyone says how cool it is up there but I’m just like, when do I get to come home?!?! We will meet with the oncologist and radiology oncologist when we get there and they will be the ones to give us the rest of the details…how long I’ll be there, etc. Dr. Sims seems to think it will likely be a few weeks, but TBD. We are just kinda flying blind at this point but like I tell Mom all the time, just gotta trust, trust. 

Other than that, my nurses really tried to keep me happy my last long week of IE but have you ever been cooped up in a hospital for 7 days?? It’s torture! Guess I appeared pretty pouty to them because I got a whole cheesecake, a football signed by the LSU football team, and some crumbl cookies with fake candles out of it…they pulled out all the stops! 

Speaking of candles, I did turn 13 the other day! They were nice enough to schedule my clinic appointment to do labs the day after my birthday but then they gifted me…get this…blood. Literally. Had my first blood transfusion and all went well, but really??? They might need a lesson in gift giving after all! It’s pretty normal for cancer patients to need blood. The chemo is killing the bad cells but the good cells are innocent bystanders sometimes. Labs showed my hemoglobin was low so they sent me over to the inpatient side where I sat and waited (very impatiently, might I add) for them to give me 3 units of blood. What a freaking Friday night. Missed the homecoming game and all. Those poor nurses tried all they could but it was just a lengthy process. Luckily, my ANC (immune system) was high which allowed me to still hang with my friends and celebrate my birthday. Maybe not exactly how I wanted to, but I’ll make up for it once this dang port is out and I have all this behind me!

Guess the next time you see me, I’ll be in Memphis! I’m going to do my best to keep those nurses on their toes too, don’t worry

Be good,

Beau

Week 10

What’s good, fam??

I know, I know, I’ve been slacking on the updates. Just over here fighting a little cancer, you feel me? And actually, if you really want to know, I’ve been hanging with my friends any chance I get and hopping around from game to game...Can’t let the social life go down the drain too!

Sooo…Week 10…Did you catch that?? WEEK 10, 10….I should probably stop there. Channeling my inner Billy Bob (you know, from Varsity Blues?!). Mom isn’t supposed to know I watched it so we will just move right along.

Okay, down to business. Overall, treatment has been going well. I am fighting like everyone hoped and thought I would. I seem to be tolerating the chemo like a champ with a little nausea following my VDC (2 day treatment) and not much, if any, nausea after the IE (5 day treatment). I’m going to go out on limb here and say I might just be the GOAT😉. So even though I feel kind of blah on my short weeks, I don’t let it slow me down. It’s those long weeks though – being in that dang place for 7 days just flat out sucks. Mom and Dad try to make it better, but time just can’t pass fast enough. I am thankful that when I do bust out, I don’t feel too terrible so I try to hit the roads and make up for lost time with the gang.

Do you recall that ‘ol drug I raved about early on….Benadryl….yeah, that one. It’s like a four-letter word to me now. It just hits different…and not in a good way. I kicked it to the curb. Made me feel like poo. I went through my last two treatment weeks without it and I feel good about my decision. Didn’t have any extra nausea without it so I told the nurses don’t even think about bringing it up. Sometimes you just gotta take things into your own hands! 

We did have a little trouble here and there with this dang port. Couldn’t get blood return a few times. Turns out, the port is slightly tilted and if they don’t access it at the right angle, it can cause some issues. Another reason they may not be able to get blood return is if there is if there is a clot in the line, in which case they inject meds into the line (TPA) and let it sit for some time to break it up. The port is a big thorn in my side. I almost fired a couple nurses and told them I’m fidna have to start accessing my own port if we can’t get this figured out (not their fault, of course). Regardless, Ima be accessing ports and writing treatment plans up in here before you know it! I do give my nurses a hard time, but I also keep them laughing so they can’t be too mad at me.

Remember my bye weeks? Well, we still go into clinic to check my levels, maybe pay the cardiologist a visit if it’s the week prior to VDC, and really just grace them with my presence😊. My labwork determines whether or not I need extra blood, platelets, or if I need to stay home under lock and key. My hemoglobin (red blood cells) got a liiiiittle low the past week, but I was able to fight back and avoid a transfusion (told you I was the GOAT). Throughout all of this, my ANC (immune system marker/level) has been great which allows me to continue to go places and be around the peeps. The shot I receive following each week of treatment boosts my white blood cells and therefore helps to prevent infection. It also causes a little bone pain, but it’s worth it if it means I can cruise the streets!

Blaire still helps play nurse and makes sure I stay ontop of my meds, but bruh, she’s getting a little busy with her basketball career. Sure she’ll forget about the *not so little* people when she makes it big, but she still finds time to take care of me in between her intense training and game schedule…for now.

What else? OH - BIG NEWS…this week is scan week! It is my off week so we will go in on Thursday for my normal labs and then head across the street for another PET scan. We will meet with Dr. Sims after that so I’m thinking she should be able to give us an idea of what she’s seeing. The scan will be sent off to Memphis and then we will know next steps. Basically, this will determine whether or not I will need surgery and/or radiation. I aint scurred. I can tell you…I’m killing it. I just don’t feel like I will need radiation, and I really feel like this chemo is doing it’s job, but we shall see! Now, I have thought about all the adventures I could take up in Memphis if I did have to have radiation, but how much fun would that be with your Mom or Dad?!? For real, cuh. I’ll save that for later.

Before I go, I would like to ask for some prayers for a fellow sigma alpha. He was at the hospital for a while trying to figure out why he kept having these episodes of passing out. He may not want y’all all up in his business so just know his rockstar parents found him a facility outside of BR to figure out what is going on. Sounds like some real deal ‘House’ stuff to me! Please pray they find answers and get back to being a dang kid.

I promise to keep you posted on all the things. Until then, you can find me on Teams for class, crashing out on Fortnite, riding the 4wheeler or at the Catholic football games. Hit me up!

Later,

Beau

Buzzed for Beau

Mom here! First off, I’ll say it til I am blue in the face…I cannot thank you all enough for the outpouring of support and prayers as we settle into what will be our new normal for the next 6 months. It has been quite the rollercoaster and I have to say that some mornings I still wake up feeling like it is all a bad dream. I believe whole heartedly that God is most selective and has handpicked Beau to fight this battle, but watching him have to go through such a thing is truly unbearable at times.

We can all learn a lot from him…as soon as he is a little down and out or frustrated, we talk through it and he pulls himself out of his funk. Albeit in the worst and toughest possible way, he is learning true life lessons and we know this is something that will carry him through the rest of his life. We continue to lift him up and remind him just how important it is/will be to stay positive as he fights through this battle. Speaking of positivity…we are already in Week 4!! A few weeks closer to beating this thing!

Now for the informational mumbo jumbo since so many of you have asked…

Diagnosis: Ewing’s sarcoma is a type of bone cancer that affects approximately 1 in a million people. It is most common in children and young adults. Doctors are very confident in their treatment for ES at this time (and that came from multiple sources) which is very comforting. It is a tough schedule but we will get through it one day and one week at a time! We did receive some great news since the last post…his bone marrow biopsy came back negative which means his cancer is localized to that one mass!! Because it is localized, there is no stage per se. Had it spread to other areas, that is when a “stage” would have been assigned.

Now that we have had some time to digest everything, I THINK we’ve got it all figured out…sure that means a curve ball is headed our way, but for now, here is an overview of what we expect over the remining 24 weeks:

Treatment:  Beau’s treatment, as he mentioned 😉, will be inpatient at the St. Jude clinic in Baton Rouge. His schedule consists of a 4 week cycle that will repeat for a total of 28 weeks. The cycle is as follows:

1. Week 1 – 2 days of chemo (VDC) – “short week”
2. Week 2 – off – “bye week”
3. Week 3 – 5 days of chemo (IE) – “long week”
4. Week 4 – off – “bye week”

Short chemo/VDC: During his short weeks, we arrive at the clinic the day prior to chemo for pre-hydration. The following morning, he receives three types of chemo – Vincristine, Doxorubicin, Cyclophosphamide. Following the Cyclo, he has to post hydrate for 24 hours and then he can head home. Day 2 of VDC, he will receive Doxo only. Week 1 looked a little something like this:

1. Arrived Tuesday afternoon to check levels, start fluids Tuesday night
2. Wednesday chemo – VDC – started post hydration at 2:30 pm
3. Thursday chemo – receive 1 chemo – Doxo – resume post hydration until 2:30
4. Headed home at 3 pm Thursday afternoon

It wound up being about a 48 hour hospital stay, which is sooo doable (says the person NOT receiving treatment!). But let’s look at the bright side…he has a week and a half to recover at home after that!

Long chemo/IE: This is officially deemed the dreaded week! During his long weeks, Beau receives Ifosfamide and Etoposide each day for 5 consecutive days. He is required to go in the day before to pre hydrate and has to post hydrate for 24 hours following the last treatment on day 5. This equates to a 6 night, 7 day stay in the hospital (Monday-Sunday).

Bye weeks: Bye weeks are our favorite weeks! Of course, the few days following chemo may be a little rough, but his only requirement is to go in for labs midweek so they can check his levels. If he is in need of a blood transfusion or platelets, they will tackle it at that time. 

Outside of the actual chemo, they also administer medicine to protect his major organs depending on the chemo he is receiving at that time, plus pump him full of fluids the entire time he is there. He receives a shot 24-36 hours after his last day of chemo to boost his white blood cells and also takes 3 days of Bactrim each week to protect him from PCP, a type of pneumonia. If you know his sister, you will not be surprised that she is living by big bro’s medicine chart…so much that I took maaaaybe a 5 minute shower and had 6 missed calls so she could clarify exactly which pill box section she needed to start with. She has officially added RN to her resume and is waiting on him hand and foot…and he is milking it!!

Now that we have that out of the way, I know everyone is curious how he did with his first round and I am happy to report that he did really well! He experienced some nausea following his short week but nothing that a little Zofran didn’t fix. He slept well, ate well, and really perked up by the following Sunday morning. His long week also went well for the most part. By day 4, he was a little spacey and out of it, but bounced back and is feeling great. Sure being home is his best medicine right now! He really has been a trooper.

Okay, okay….I’m back!I mean, you let Mom make a guest appearance and she nearly puts you to sleep! On to the fun stuff…I’m HOME!!! If you know me, you know I am up for anything and I actually try stay away from home as much as possible (no offense Mom and Dad). For real though, I didn’t ask for all those siblings and just look at my friends…they are way more fun to hang out with! It does feel good to be home though!

Can you believe they had me locked up for 7 whole days?? That long week was cheeks. Seriously.I was not a happy camper, but since I had no choice, I tried to pass the time on the PlayStation, playing cards, had some visitors, took trips around the hospital looking for the best vending machine, and slept when I could. I can’t travel too far or even sleep too long because bruh, I have to pee like every 2 hours!!! It is the worst. Not to mention, the nurses have me on a tight leash since they are always wanting to check this and check that, give me medicine, etc. etc. etc. But let me tell you, that Benadryl they give me before chemo…it is supposed to help with nausea, but that stuff knocks me slap out. If you need a good nap, I totally recommend it! I also got well acquainted with DoorDash this past week. No, Moms, unfortunately the food is not as good as Woman’s hospital. I actually can’t stand it so needless to say, DoorDash and I have become pretty tight. A little word to the wise though…never DoorDash Subway. Just don’t do it. You can thank me later.

I officially started losing my hair, get this, before the long week of chemo even started! I didn’t think it would happen until a little later, but nothing I could do about it. Guess I never really thought about the why, but do you know why chemo makes you lose your hair? The purpose of chemotherapy is to kill fast-growing cells (cancer), and your hair is a fast-growing cell. Mind blown! But hey, if it made my hair fall out that fast, just think what it is doing to my tumor…or at least that’s how I like to think about it. Anyways, we knew we needed to go ahead and shave it when I got back home so that is what we did. 

You know how I said my friends are more fun to hang out with? Well, they’re not only fun, but they are some of the best dudes you’ll ever meet. They weren’t going to let me go bald by myself…pics for proof:

It made me so happy to see everyone and it was preeeetty fun shaving some of their heads too! I mean, they had some pretty hair and we all secretly cherished our long locks, but they weren’t going to let me do it alone! I may be a little biased, but we look good either way! The nurses said mine might even grow back curly…I’m fitna be looking so good, cuh! Speaking of looking good, can you believe Reid cut off that blonde hair too?? Still trying to figure out where the blonde hair came from. He’s also the only kid whose name doesn’t start with a B…he’s totally adopted, but I digress… Even Dad and Pawpaw, some hunting buddies, and other friends joined in too. It was pretty darn cool. I’ve decided that Coach Curry totally owes me...I did him a solid and am quite literally going to save him so much time writing us all up for our long hair. I just hope he remembers that when I am officially back at school 😉

I can’t lie, I am a little jealous of my friends since I can’t actually go to school, but I will be zooming in to classes as often as I can, and I fully expect to get all updates on anything juicy that goes down.  I guess it is pretty cool that I am the only one who will get to “attend” class in my pajamas! I want to go to my football games too (yes. yes, and social distance, of course). I know this year is going to look a lot different than I thought it would but these first few weeks kinda flew by, so I hope the rest of it does too! Well, guess that is enough for one day. I gotta go finish Ms. Candice’s math homework…

I head to the clinic tomorrow for labs and then back on Monday for my short week. I will keep ya posted!

Later!

Beau

P.S. Mom says if you are having trouble understanding some of that garbage above (how dare she!), you may need to reference the urban dictionary. I guess she's referring to you baby boomers, gen x-ers and millennials.

The Next Chapter...

Where to start???

A little housekeeping before I dive in.  This blog was started many moons ago when I, Beau Hudson Soulier, entered the world WAY too early.  Mom started posting updates to this blog as a way for everyone to keep tabs on me and my progress.  Well, fast forward to my now 12 (basically 13) year old self, and I am STILL causing problems!  Mom thought this may be a good place to continue my story, so she dug up my old blog, gave it a very basic rebrand and there you have it.... The Book of Beau.

As many of you know, this past month has kind of thrown us for a loop.  I was in Panama City Beach living my best summer life, as I am known to do, with one of my best buds (please refer back to my March 2012 posts for Sawyer's introduction) and started having some pain on my right side - stomach/shoulder/chest.  Aunt Al was able to get me in with a pediatrician who sent me for an x-ray due to diminished breathing on my right side.  Low and behold, I did have a little fluid in my right lung, but they actually saw a dense spot on my left lung, as well.  What the sigma?!?!

Uncle Craig got me back to Baton Rouge late that night, Mom scooped me up on the side of the interstate, and we went straight to Children's.  After a full night of testing, scans, poking and prodding, the doctor's told us that I had a tumor the size of a baseball on the outside of my left lung...say what???  

I'm sure you noticed if you followed my NICU journey back then, but we (I mean, Mom) tend to get a little long winded so to save you from allllll the details, here is my best stab at a basic summary and timeline of the past month:

• June 21st - Biopsy of the mass

• June 28th - We met with the oncologist, Dr. Sims, to get the results from the biopsy.  She informed us that the tumor was malignant and showed abnormal cells, small round blue cells to be specific.  A sample obtained from the biopsy was sent to St. Jude in Memphis to test further. 

• July 3rd - I underwent a PET scan to see if there were any other spots in my big, beautiful body.  Here, I met my favorite nurse...no offense to the others, but she only had to stick me once so she gets my vote!  We met with Dr. Sims right after and she told us the scan did not show any other spots from what she could see, YAY, however the biopsy came back favoring a type of bone cancer, Ewing's sarcoma.  I mean, way to ruin a kid's July 4th!!!  It didn't stop me from celebrating with my cousins or making my way to Grand Isle though, not to worry!  Pics for proof below:

• July 15th - This was port placement day, bone marrow biopsy day, and they also re-biopsied the tumor to basically confirm the original diagnosis of ES.

• July 23rd - First trip to the St. Jude affiliate clinic (here in Baton Rouge) to access my port for the first time, sign consents with Dr. Sims, and go over all the things!  Talk about information overload!!  They got me to a room that afternoon to start me on fluids and sheesh...I've never peed so much in my life!  Dad got me all set up with my PS5 and we stayed up til wee hours of the morning playing the new college football '25 game (shhh...don't tell mom!).  Just FYI - my chemo treatments will be inpatient, meaning they have me locked in this joint the entire time.  They claim it is so they can give me fluids the whole time I am receiving treatment in order to flush the chemo through my system.  Let's be honest though, they just want to hang out with me, and I do not blame them one bit! 

• July 24th - It was GO TIME!  I received three types of chemo on day 1 and totally crushed it!!  To be honest, I was given a hefty dose of benadryl and slept right through the first two and had some visitors to pass the time while the third type was being administered.  I had a great day overall and did not have any yucky side effects except for a little metallic taste in my mouth.

• So that brings us to today, Day 2 of my "VDC" treatment.  I will let Mom give y'all your lesson in all things chemo and treatment because it makes my head spin!  All I know is that I get just 1 chemo today and can go home after my fluid's are finished around 2:30, whoop whoop! 

I will continue to keep everyone posted, but I am sure you will hear from Theresa soon...

Before I go, I just want to say thank you for all of your prayers and support.  I mean, this whole cancer thing is pretty crazy, and I can't say that I ever thought this would be the next chapter in my story, but my parents keep telling me God only gives his toughest warriors these crosses to bear.  Well now it all makes sense =).  And like I've been telling my friends...you better watch out because when I shed a few pounds and my hair grows back, I am going to be getting ALL the females!!  Definitely a silver lining to this whole ordeal!

Be cool,

Beau