92 days since my last post

Most people who know me, know that I am a numbers person, and it's really hard to believe that 240 days have passed since Braeden's diagnosis of this pain in the butt (actually, that should really be his neck and hand not butt) spinal cord tumor.  

I was curious and looked to see how long it had been since his brain tumor diagnosis. The answer is 5,049 days.  The kid has only been here on this earth for 5,680 days. (He will tell you in a quick second, that he is 2 very important minutes older than Braxton:)   

During those 5,049 days of his life he has taught me in so many ways what it means to be a hero. 

He has gone through more than most, and handles it like a true champ.  He never fails to make ME feel better about what's going on with him.  He has an incredible insight on life that I wish everyone could experience.  He makes me a proud mama, and I adore him.  (Although, the summertime boredom fights with his brothers could calm down a bit.)

On to the point of this post.

Braeden has been doing pretty well since his last MRI in April.  He has been busy with school, GMS camp, bowling league, drums and just stuff in general.  (The boy will have had a total of 6 MD and therapy appointments this week alone by tomorrow.)   He is still not a fan of OT and PT in case you were wondering, lol.   His left hand weakness continues to be a pretty significant issue for him.  He has so much atrophy in that hand, it makes a lot of simple tasks that we think nothing of very difficult for him to accomplish.  He reports that some of his numbness is better, and he feels like his hand is stronger.  He says that holding his trumpet is an easier task.  But then on the other hand, no pun intended, there are still so many things he is unable to do, but in his own way he is figuring out a way to compensate and be self sufficient. 

He is schmoozing his way out of some of his chores around here, but I am OK with that. 

Braeden had a follow up MRI yesterday, and we got the results today.  Dr. Fuchs was happy to report that the scan looked stable and good to him.   The plan is to repeat a scan in 3 months. The initial plan was to repeat the scan in 6 months, but Braeden was seen by his endocrinologist yesterday, and was told that if his MRI looked good we could start back his growth hormone.  The tricky part of that plan is GH makes the good and the bad grow.  So to keep a closer eye on things Braeden will have another MRI in October to see how things look. Dr Fuchs seems to think that him being on GH will not cause the "leftover" tumor that was left behind from surgery to grow.  

As always, the love and prayers and texts and hugs from afar are always so appreciated.

Until the next MRI.....

#BraedenBrave

#MrUnlucky

Just breathe it's a good thing

First of all, thank you so much for all the sweet comments, texts, and love after my blog last night. 

As most any other parent would be, I was really worried, and really anxious about today. All of your prayers and kind words helped ease my mind.

This "happy blog post"  will be fairly short and to the point.

We saw Dr Fuchs after the MRI, and he thinks that the tumor has decreased in size.
(The radiology team had not had a chance to look at the MRI, he feels sure they will agree with him.)

This was definitely unexpected great news, and even better news than I thought we would hear.
(I thought we would either hear that the tumor size was stable and hadn't grown, or that it had  changed in size and was bigger.)

Dr Fuchs says we are are not out of the woods yet with this thing.  But today's news is fantastic, and as he told me, "just breathe it's a good thing."

I have attached a picture of his MRI from January, and from today.  If you look closely, you can see the changes that Dr Fuchs talked about.

As always, your prayers and love are greatly appreciated.

#BraedenBrave
#MrUnlucky

Time

Time has moved so slowly since our last appointment three months ago...

But at the same time it has moved so quickly since our last appointment...

I am dreading his MRI in the morning...

I want more than anything for everything to be ok...

I want to know that his grade II tumor hasn't grown...

I don't think I can bear to hear that it has grown...

Please pray that my boy will be ok...

One worried Mama...

One RockStar Kid...

#BraedenBrave
#MrUnlucky

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