Surprise....

Hi to all,

Today was a busy day for Braeden.   As planned, he had a follow up spinal MRI first thing this morning at the Duke Raleigh campus. Then we were on to Duke to see his Neurosurgeon, and then to have a new patient consult with Neuro-Oncology.

If you recall from my post "Pathology should be called SLOW-logy",  today's MRI was important because it would become our "new baseline" MRI.  The MRI from today will be used as a comparison with his future MRIs. 

Unfortunately, because Braeden is such a wiggle worm in the MRI machine, the study today was not his best work.  It had a lot of "movement" and "artifact".  He said that he couldn't even breathe without them saying something to him about being still.  What's a kid to do?  Not breathe?

Luckily, Dr Fuchs was able to determine that the tumor looked unchanged from last month's MRI.  Plans made were for him to return in 3 months  and to have another MRI, and for Braeden to continue working with OT and PT.

Off to oncology we went...

There always seems to be some sort of unexpected "surprise" whenever we are at Duke.  We have definitely had our fair share of both bad and good surprises there.  I will keep it to the point and try not to overthink "our surprise" today.

Pathology results have returned and they reveal that Braeden's tumor is actually a Grade II tumor rather than a Grade I tumor.  So what does this mean?  Of course, I had to ask questions, and ask questions, and ask questions, and try to understand what exactly this meant.  And to best of my understanding it means that.....

---his tumor is now officially a Diffuse Astrocytoma  Grade II
---molecular testing will be done to "pinpoint" exactly which type we are dealing with
---having the molecular testing done now, will save us 4 weeks time in the future if his MRI changes, because they will already have an idea of what "agent" (this is a nice what of saying Chemo/radiation) he will need


The plan with Oncology is to return in 3 months and have a brain and spinal MRI which will be coordinated with Dr Fuchs office, and then we will go from there.

Thank you to everyone for the continued prayers.  They are appreciated and welcomed.


#BraedenBrave
#MrUnlucky

New Year Baby Steps & Sprints

Happy 2019 to everyone, here is to a happy and HEALTHY New Year.

I wanted to give an update on Braeden.  Several of you have texted me today, to check in on him and to see how he was doing.   I thought to myself,  "Ok, maybe I need to do an update."

So here goes.....

REWIND:

Braeden had his surgery 36 days ago, and he has accomplished quite a bit since then.  (He would tell you that he has accomplished more homework than he wanted to 😃)

I would tell you, I see him getting stronger daily, and that his attitude and his determination are a huge part of him getting better.

He missed just over 3 weeks of school, and wanted to go back on the last day before school tracked out before Christmas.  It was a good test run for him, being a half day.  He was able to lighten his back pack and give "it a go".  As usual, the daily school report was "it was boring."  I think he fared pretty well, and it did him good to see his school friends.

He has had weekly OT and PT appointments.  He isn't the biggest fan of these appointments. They are a lot of work while he is there, and a lot of "homework" for him once he is home.  He knows he has to put the work in to get stronger and to regain total use of his left hand.

Someone asked me today if he like his therapists.  I can say that he likes them both.   I think that he appreciates that his OT is trying to "configure" a way for him to be able to hold his trumpet for his upcoming parade.  (This is important to him, because he missed several while he was out after surgery.) I also like that she has taken into account what is important to him and is trying to find a way to make this happen.


PRESENT:

Braeden went back for his first full day of school today.  As a Mama, I was WORRIED.  The two most outstanding worries in my mind were as follows:

-his book bag is too heavy, and having to carry his trumpet will make it worse, he is going to strain something and cause an issue

-he won't be able to open the door to the school with both his trumpet and his book bag, (I mean seriously, those two things together weigh at least 35 lbs)   

I prepped Braxton during the car ride to school, and I said in my nice 6:30 am MOM voice "You take his trumpet to the band room, if he needs you to, and you be sure to open the door for him if you don't carry his trumpet."  (It's the simple things that I am worried about it seems, his left hand weakness is still causing him some issues that most of us wouldn't think about.)  Braxton didn't hesitate, and was more than willing to be the helpful brother. Per the after school report below, it seems I was worrying needlessly.


Car Pool Report after Braeden's first full day of school in over a month:

He refused to let Braxton carry his trumpet.

Braxton reports that he did hold the first door into the school open for Braeden, but then laughed and said that Braeden held the second door open for him.

Braeden also says I worry too much, well KID that's my job.

Oh, and they wanted Bojangles immediately after school.

So all in all, I think it was a good "first day" back for him.

For this I am thankful.

As I sit here typing this,  there are still NO NEW PATHOLOGY results. I am going to call them tomorrow and see if they can give me any other update other than "pending."  I have been checking MYCHART almost daily, and there haven't been any new updates.   This is to say the least is exasperating, frustrating, and honestly quite unbelievable that we have been in limbo this long waiting on the results. 

Our next appointments are on 1/23/19.  On this day, he will have the MRI, an appointment with Oncology, and with Dr Fuchs. I would hate to think that we wouldn't know the results until that day, or even worse if they "were still pending" when we get there.

I have to believe that the Oncology appointment will just be a one and done, Dr Fuchs was so positive last month that chemo and radiation would likely not be necessary. 

I will end this blog by saying the child is almost back to his normal routine.  He just finished doing his laundry, and has asked if he can go to bowling league on Saturday. As of now, our plan is to test the waters tomorrow and go bowl after school to see how things go, I don't want him to push his limits.

Baby steps I am thinking, and he on the other hand, is a full sprint....

#BraedenBrave
#MrUnlucky