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:
- Week 1 – 2 days of chemo (VDC) – “short week”
- Week 2 – off – “bye week”
- Week 3 – 5 days of chemo (IE) – “long week”
- 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:
- Arrived Tuesday afternoon to check levels, start fluids Tuesday night
- Wednesday chemo – VDC – started post hydration at 2:30 pm
- Thursday chemo – receive 1 chemo – Doxo – resume post hydration until 2:30
- 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.