Pathology should be called SLOW-logy

As most of you know, we had an appointment this morning for the results of Braeden's pathology.

Apparently, the tests they are running are pretty special and certainly SLOW because not all of the results are back. (Keep in mind, his surgery was 3 weeks ago tomorrow.)  

I will give you a gist of what we found out today.  I will preface it and say, I am very relieved overall about what we heard.

As always, Dr Fuchs pulls up a chair and just dives into everything.  I really like his bedside manner, he doesn't sugar coat things, or lead you on about what is happening or could happen.  He never rushes through the appointment, and always answers our many questions.  He is also sure to throw in a few jokes to try to ease Braeden's mind about what we are discussing. 

We hear a ton of information at these appointments, and obviously we hope we are asking the right questions.  

With that being said....

Most of the pathology is back.  The pathology is pointing to the tumor being the "Pilocystic Astrocytoma" as he previously suspected.  

One part of the pathology that is missing is some of the "genetic" testing that is being done.  I don't believe that this impacts his treatment path, those results will be more information for Braeden's overall clinical picture. 

One of the more important pieces of the pathology that is missing is the testing that reveals what grade the tumor is classified as.  (Grade I, II, III, or IV.)   Dr Fuchs feels very POSITIVE that it will be classified as Grade I tumor.  He said that the testing is showing the "cells as slow dividing".  This is a good thing.  The quicker they divide the higher the grade the "worse" the tumor.

So where do we go from here.....

We can't do much until all of the pathology tests are back and  we get a definite diagnosis and "grade".  The reports that are back are considered preliminary and are not "official" as of yet.

The plan as of now is for Braeden to have a MRI in about 6 weeks. (6 weeks gives the spinal cord more to heal and any swelling that may still be around) 

This MRI will be considered his "new baseline" MRI.  His post op MRI did not show much of the "tumor sliver",  it is our hope that the next MRI will be the same.  

We will also see Dr Fuchs and a Neurology Oncologist on the same day of the MRI.  

If the "sliver" is the same on the next MRI,  (Dr Fuchs doesn't anticipate that there will be any growth) Dr Fuchs feels VERY positive that chemotherapy will not be necessary.  

Chemotherapy treatment plans if necessary will be left up to the Neurology Oncologist that we see that day.

It seems that chemotherapy is the way we will have to go if further treatment is needed.  Dr Fuchs seems to be very leery of another spinal surgery.  I think the damage he potentially could cause is his greatest concern.  

Braeden will have to have numerous MRIs over the next year or so, to ensure that the "sliver" doesn't  change in size.

Dr Fuchs knows that there is some tumor left behind, but he says these tumors are strange in the way that sometimes they will "go away" on their own.   He described his tumor as slimy grey stuff.  He doesn't think we should jump into chemo, until we see if the tumor goes away, or if starts growing again.  Let's just hope this thing just goes AWAY.  

We are not "off the hook" yet, but this is the best news I think we could have gotten today.

Braeden is doing better daily.  He should be able to go back to school after the New Year.  He is not a fan at all the OT exercises he is having to do.  We appreciate all of the prayers, they are continuing to work.

Merry Christmas to you all!

#BraedenBrave 

#MrUnlucky

Snow Days and Sutures

Duke gave us a call on Sunday to cancel his appointment yesterday because of the weather.  

I called Duke this morning to rescheduled and they are "fitting us in" next Tuesday for the removal of his sutures.  His sutures will be almost 3 weeks old by this time.  This means they will be more difficult and more uncomfortable for him when they try to remove them.   I am going to call his pediatrician's office and see if they are able to see him sooner. UPDATE: he was able to be seen yesterday on the 12/12 to get his sutures out.  

Otherwise, he is still doing well, and improving daily.  He has officially ditched the cane.  I am not surprised...

He has a PT appointment this Thursday at a local office that we are familiar with.  Both Braeden and Chase have had various therapies with that group over the years.  Most of the faces have changed but there are a few familiar ones which is nice.

Keep the prayers and positive thoughts coming!  We still have the pathology results that we are anxiously awaiting.   My best guess is that they will go over those results next Tuesday when we are there for his appointment.

Barefeet & Bojangles

Good morning to all!  I wanted to update all of you good people on how Braeden's week has been.

He has had lots of company which has done him a world of good.

Added bonus, he has been able to play card and board games with some of our company, and he has really enjoyed those interactions.  All the while,  being able to eat the gifts of yummy treats.

He has always enjoyed being around others and it has done him great good to be surrounded by people. He also wants everyone to know he appreciates all of the goodies that he has received.

The week has not been without challenges that is to be expected.  BUT he is improving EVERYDAY.  On Thursday he was accomplishing things that he was unable to do on Wednesday and so forth.  Daily this child impresses me with his diligence to get better.

He has been pretty tired the past few days, and still hasn't had the energy to tackle his schoolwork.  I think yesterday he realized that he may need to take more than two weeks from school to recover.  I definitely think he needs more time to get back to 100%.   I would say he is at about 60 to 70%

He nearly plowed me over this morning going down the stairs, when I mentioned I was going on a Bojangles run this morning.  He said I needed to pick up my pace 😍.   I guess it is safe to say the cane is going to end up in a closet somewhere.

We managed to get into our local OT office this week. (He will be seen in WF next week for PT, which is great.  Chapel Hill is a haul for us, and the drive there is no fun with the traffic we would surely face.)

OT is essentially NO FUN.  Braeden is really struggling with the exercises.  Some of them are very difficult for me to do.  (The dreaded pink putty, I know my OT friends know what I am speaking of and it is enemy # 1 over here)

We repeated strength testing on Thursday at the OT appointment.  Below is a "chart" of the results of his strength testing.

Grip Strength       

Date                              Left Hand                     Right Hand

09/19/18                        15 to 16 lbs                    60 to 64 lbs

10/31/18                         6 to 10 lbs                     60 to 64 lbs

12/06/18                         5 lbs                              60 lbs

Pinch Strength

Date                              Left Hand                      Right Hand

09/19/18                       2 lbs                                 10 lbs

10/31/18                       1 lb                                   10 lbs

12/06/18                       0.2 lb                                5 to 6 lbs

The pinch strength on 12/6 is obviously very concerning.  All the more reason for him to work as hard as he can on his exercises, no matter how difficult they are.


Monday is a big day for Braeden, he has an appointment to get his stitches out.

More importantly, we should find out the pathology results. These results will certainly lead us down a "path, "  I am hoping that it is an EASY path.   I pray that chemotherapy and radiation will not be necessary, but with some of the tumor being left behind, it is a real possibility.

I know that once we know what we are dealing with, he/we will take it head on as we do.

As NC would have it, we are on standby for snow.  From all of the reports, it seems that it will be a significant amount.   Braeden's appointment is at 9:30 at Duke that morning.  I am hoping that it will not be a treacherous drive to Duke that day.

As always, prayers are appreciated and working.

Below is a pic from this morning from our Bojangles run.  Braeden has always been the kid that goes on errands with me.  It was so good to see him back in the passenger seat beside me even it was 38 degrees and he was barefoot.  I mean the kid is going to catch a cold like my grandma would say.

#BraedenBrave
#MrUnlucky

"Braeden is home"

Just wanted to update my friends and family that are not on Facebook.  My post on FB yesterday, simply stated "Braeden is home."  It is sure to be one of my favorite statuses of the month.

I have had a few texts from others that are not on FB today asking how Braeden is doing,  So here is an update for all of my friends that are on FB and those that do not have FB.

Braeden was released from the hospital yesterday. He was given a cane to use to help steady himself and to use for balance.  If this morning is any indication, the cane will likely get lost by the end of the week.

His first night at home was not without struggles, (pain level and maneuvering himself in and out of bed were difficult for him last night)  my hope is that as more days go by, these struggles will resolve quickly.

He still has a lot of work to do to get back to "being normal."  He told me today, that he had set a goal for himself to return to school the week before the holiday.

This kid means business, and he will need to get a lot of things accomplished before this happens.

He needs intensive OT for his hand.  The sooner the better....

He also needs to be able to do his ADLs.  (ADL= activities of daily living)   As simple as this sounds, he has a long way to go with this.

In talking with Duke their first available appointment for OT is on 12/12.   Their first available appointment for PT is 12/17 (in Chapel Hill, yikes!)  These appointment dates seem so far away, and also the drive seems so far away.  We will certainly get him where ever he needs to go, but it would be nice to have his therapy appointments more local. 

Braeden's pediatrician, Dr Joanne gave me a call today.  She has been Braeden's doctor since he was born.  She had just gotten a note about Braeden's surgery, and had no idea that any of this had happened with Braeden.  She is wonderful, and we have always valued her so much as the kid's pediatrician.  It's a great feeling knowing that she is in his corner and will absolutely do all she can for him and us as a family to help get him the care he needs.

She told me she would write orders for referrals for Braeden to try to get him into a more local OT and PT office, and hopefully an office with appointments that are available sooner than the above appointments mentioned.

Our plan on Wednesday is to start tackling all of the schoolwork he has missed.  The "school" show must go on.

We have not heard from Dr Fuchs about the pathology report.  We will continue to wait "impatiently" for those results. Those results hold the answer of which path we will be headed down next with Braeden. 

As always, prayers are appreciated, and are working.  Keep up the good work!   I would love the prayer of NO CHEMO or RADIATION to be answered.

The meals/the gift cards for meals (the boy is a foodie, and loves a good meal)
The visits (he is such a people person, and likes to be around others)
The get well cards (he has read each and everyone of them)
The gifts of chocolate and "junk food" (need I say more)

Each of things have brought a smile to his face, and I thank you!

Until the next post...

#BraedenBrave
#MrUnlucky