My favorite job

Braeden's new schedule keeps us all pretty busy.

Monday=radiation,this is a quick appointment, the drive there and finding a park is the longest part of it all

Tuesday=radiation, and an hour with his Duke tutor

Wednesday=radiation, blood work, appointments with his radiation oncology doctor and his regular oncology doctor, and also throw in an infusion of his ChemoRX  (the Avastin drug infusion was called this in his chart today.) every other Wednesday. (I attached a picture of him getting his second infusion this past Wednesday)

Thursday= same as Tuesday

Friday=same as Monday

(We also had an IEP meeting for the home-hospital care this past Thursday, and he will begin having 2 home visits a week from a WCPSS teacher to keep him up to speed on his missed class time.)

Below days are subject to change from week to week 

Saturday= Yesterday, he spent a few hours out his good friends Roman and Zach doing normal teenage stuff.   I honestly believe this is the best kind of medicine for him.  Happy that he has such a good friend circle.

Sunday= (Today) He has asked to go to Chase's soccer game.  (He said he had a few of the moms he wanted to see and hang out with.  Lucky ladies for sure. )  It may seem simple, but this is BIG. Braeden is not usually a fan of sitting at the soccer field for 2.5 hours. It has always been  frustrating for him to hear all of the sideline yelling about what is going  on the field and not know what's happening. He also hates Vitamin D in general. I love that he wants to see those special Moms,  I don't know who will have more fun!

He had radiation #10 yesterday.  10 down, 20 to go.  He hasn't shown any obvious side effects from the radiation.  The doctors have told us that we can expect them around week 3.  (Burns, fatigue, etc.)  His "GRAY"  dose  (the amount of radiation given over the 6 weeks of treatment) is around 50. In reference, when I had radiation my "GRAY" dose was about 50 over 5 weeks of treatment.  I remember some fatigue, and one really angry burn.   As I typed this, I was curious to read what I had written about my own radiation treatment.   It's so hard to remember all the details, I blame old age, lol   I found my blog about my radiation experience.  Below is an excerpt.

"I just finished my 21st radiation.  Only 4 more to go!  Radiation has not been too bad, I can definitely tell I am more tired and I do have some burns, but overall I have gotten thru it pretty unscathed.  Let's hope that after it's done, my heart and my lungs can say the same thing.  The doctor's are pretty sure, I am going to suffer some sort of heart damage from this.  Again, damn!  But what can I do? 
Radiation was one of those things that was not too terrible.  I did learn not to drink copious amounts of caffeine before going, because you are suppose to lay still for 15 minutes during your treatment.  I have a hard enough time doing that without an extra 200 mg of caffeine on board. "

His most bothersome side effects at this time are from the steroids he is prescribed. I won't mention his left and right hand weakness.  That is just a given.  He is on a tapered dose schedule and every few days the amount he takes is reduced.  The constant hunger, no sleep, and acne are expected to resolve after he stops taking them. He is hungry all the time, trying to find the balance of healthy foods and satisfying his hunger is a job.   (I won't lie, we both have had a few good meals since he began the steroids.  Last week's top meal after radiation was a yummy spicy lamb meatball and kale pizza.)

As a mom of three teenage boys, I am living my best hectic taxi mom life.  The day to day schedule of  3 active teenagers is quite impressive.  3 kids, 3 places to be, and almost always having them to be at different place.  Add in Duke time, and it is like having a full time job on top of your other job(s). Thankful, that I am able to self-schedule and work when I don't have the kids.)   I count my blessings we (Bart and I) are able to get him to and from his appointments and that his step-parents (Chandler and Claudia) are able to jump in and help with Braxton and Chase.

Having this Duke job is difficult, the unknowns are enough to drive you crazy, the tears are never ending, my blood pressure is really misbehaving and seeing your child having to endure "something else" just sucks.

No matter how much my Mama heart hurts seeing him go through this battle.
I have to believe he is going to be OK.
I told Braeden the other day, without a doubt,  he will always be my FAVORITE full time job..



#BraedenBrave
#MrUnlucky