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

When Mama is away....

I wanted to send out a positive update. Bart and Claudia have been at the hospital with Braeden since I left to go and get Braxton and Chase from school earlier today.  It was hard to leave Braeden but I knew he would be in good hands.

Claudia called me shortly after I left, letting me know that Dr Fuchs stopped by and he is very pleased with Braeden's progress.  The numbness, and other issues Braeden is "complaining" about is completely normal, and he is not concerned.  WHEW......

This morning before I left during PT, Braeden was introduced to "the walker."   It was an awkward meeting of sorts for him, but a necessary one.  His "mind" and his "feet" were still not communicating with each other.  That 50 foot walk involved Braeden, a PT, an OT, and a RN following behind with a chair.  Although, it was a better walk than his experience yesterday, it clearly showed he still had quite a ways to go.

I wasn't even sure how I was going to get the man-child in and out of my SUV, let alone up the steps into the house and up to the second floor.  (I wasn't even letting my mind go thinking about how in the heck he was going to be able to go back to school in two weeks. And I am still not.)

I learned a long time ago, with all this medical stuff, you TRULY have to take it day by day.  If you don't you will drive yourself crazy with the "what ifs and how in the hecks."

I have gotten several videos of Braeden since I have been home, and each one of them show him taking LONG walks with just the assistance of Bart and the RN, and eventually just with the RN.  They also show how much STRONGER he looks from even just a few short hours ago.  He apparently has ditched the walker from the looks of the videos.

He still has a a long recovery road ahead of him, but it sure did do this Mama good to see him walking without the walker.

Keep the prayers coming.  We still haven't heard from pathology about the next road we will traveling on.

#BraedenBrave
#MrUnlucky

36 hours

I wanted to send out a quick update.  Braeden has been busy the past 36 hours since surgery.  A lot  happened yesterday afternoon and throughout the night.  I am going to break it down into a problem list of sorts, some of the things he has dealt with the past 36 hours.

Physical therapy/Occupational therapy 

They stopped by together as a team yesterday to get Braeden up to walk.  This was not an easy task for him.  He is unable to walk on his own.  They are suggesting it is a sensory and an edema issue.  He says he feels "sharp pins and needles" in his feet.  Hopefully, both of these will resolve soon.  

There is a test they keep doing to get an idea of what he is able to to "sense"  Basically, it is moving his toe up and down, and having he say whether his toe is up and down.  He missed quite a few of these when the Neurologist performed this test shortly before PT/OT came to visit yesterday.  OT worked with him after the short walk, and Braeden was very frustrated with how difficult the exercises were, and how poorly he was able to do them. After both teams left, it was the first emotional break I have seen him have since all of this has begun.  I believe he didn't imagine that it would be so difficult to achieve walking or doing something as simple as squeezing a ball.  

Pain control

Braeden was refusing any pain medications other than Tylenol for most of the day.  It was obvious he was hurting, but he was trying to tough it out. The staff and I have talked to him about staying ahead of the pain instead of behind it.  His body doesn't need the stress of being in pain while he is trying to heal.  Thankfully, last night he took a pain pill around dinner, and then he asked for one around midnight on his own.  

Worsening loss of feeling in his leg

Last night, Braeden relayed to me that he was having even more issues feeling his legs.  I asked for the doctor to be called to evaluate him.  They didn't seem to be too concerned, thought that it was possible that not feeling his thigh was his baseline, and that Braeden didn't realize it.  This is obviously something that will be monitored by us over the next few days.  He is also complaining this morning that his left leg feels heavier than his right leg.  Another thing to keep a check on.  (Braeden is not a complainer, and I feel that anything he mentions warrants follow-up)

Irregular/slow heart rhythm/low blood pressure

He needed fluids for his low blood pressure which has improved.  His monitor was showing an irregular heart rate and rhythm. He got an EKG around midnight last night that showed a sinus arrhythmia.  They did labs to try to find out what was causing this.   His phosphorus seems to be the bigger culprit as to why this is happening.  They began IV phosphorus during the night.  This drug is very tough on the veins and is being given at a low dose over the course of  the day. They are also giving him magnesium and calcium to try to improve his electrolytes and hopefully all of these things together will fix the EKG issues.

Fever

Braeden had a temp of  99.0 last night, and again this morning. In the hospital world this does not concern them.  Keeping a close eye on this considering his "other history" and what having a fever usually means for him.

Standing

I was able to get him up this morning at 5 to stand by his bed to use the bathroom. (I use the term bathroom very loosely.  He described the urinal this morning as "a very small target" and "it's not manly enough."  (Love his sense of humor, I hope he keeps it throughout the day.)

He was able to stand with my support and without too much of an issue with swaying.  But we only stood, he didn't take any steps.  Hopefully, when PT comes today, walking will be an easier task for him today.  One of the neurologists did the "bending the toes up and down" test this morning around 7 and he didn't miss any.

ICU

We should be moved out of here today once a room is available.  He is more than ready.  In the PICU,  the rooms are not private and he has a very young and "loud" room mate, whose mother's cell phone has rung LOUDLY all night long the past two nights.  

Braeden'ism for the day

I will end this blog on a funny and so Braeden note.  Yesterday morning,  we were talking and our conversation went something like this....

Braeden- "Mom, when people ask me what kind of surgeries I have had, what should I say?   Spinal or Brain?"

Me-  "Say both of them, because you have."  

Braeden- "OK Mom,  I was just checking, I didn't want anyone to think I was an overachiever."

This kid has all of my heart....keep the prayers coming, he still needs them

#BraedenBrave

#MrUnlucky

Surgery day

Braeden was scheduled for his laminectomy surgery at 10:45 AM, and as Duke time would have it, he was not taken back to the OR till around 12:30.  We were updated hourly by the OR team, which means they told us during each hourly call they were still working on him.

It was a long day of waiting, and nerves, and tears.

We were called to the consult room around 5 PM to discuss with Dr Fuchs how surgery went.  During those 15 minutes or so, he went over A LOT of information.  I unfortunately know, I didn't capture everything, nor will I remember it all.  I hope that what I did hear and put to memory are the most important pieces.

One of the biggest concerns going into surgery was the damage the actual surgery would do to Braeden.  Keep in mind, "digging around the spinal cord" is a dangerous thing and we honestly didn't know how Braeden would be affected.  (Would he have to learn how to walk again?  Would he suffer any more nerve damage, and lose the use of his left hand completely?   These kind of questions ran thru our minds, because they were real possibilities.)

This is the reasoning behind having the "nerve team" during the surgery "probing" to ensure that Dr Fuchs wasn't causing any kind of impairment.   It was quite a relief when Dr Fuchs that even though he had the "spinal cord" opened up, and was working to remove the tumor, that the nerve testing never reflected that any deficits were being caused.  I think Dr Fuchs was surprised as well.  This in short is a miracle in itself.

Dr Fuchs described the tumor as very "sticky and flimsy."   He said it was hard to grab pieces of it.  He got as much out as he could, but there is still tumor left behind.  He left tumor behind because he felt it was to dangerous to keep digging,  because he didn't want to damage anything, especially since the nerve testing was going so well.

(He also did not return the C6 bone, he felt that there was a lot of inflammation, and having the bone there may cause more pressure/issues in that area.  In the long term, this shouldn't cause him any issues.)

He said that he thought the tumor is what is known as a Pilocystic Astrocytoma and it is considered a  Grade 1 benign tumor. (Grade 1 is the "better of grades to have in the tumor world.  Grade 4 is not what you want to hear.)

The tumor pieces have been sent to pathology.  The results will not be back until the very earliest Friday afternoon, but more likely after Monday.   The plan once they return will be to likely involve Neuro Oncology after they figure out exactly what this thing is.   The next hurdle for Braeden will depend on their recommendation, this could either be chemo or radiation.  (I got the feeling that another surgery is not ideal.)

It depends on the pathology results, so we will wait until they return impatiently.


Braeden got to the PICU at around 8 or so.  He is sleeping off and on pretty heavily.  He did wake up and talk to us briefly, and was appropriate.  He is able to move his head, and seems to be overall doing well.

Good news today should also include that Braeden was able to stretch out his left hand, which as you know from earlier posts, he had lost this ability.

I am watching him sleep now, and I am praying he has a restful night.  Those prayers also include that his pain level will be manageable over the next few days.

He has another MRI planned for tomorrow to see where we stand with the "leftover" tumor.

A BIG thank you to all you wonderful people.  The amount of love felt today was immeasurable.  It means the world to have you all in Braeden's corner.

#BraedenBrave
#MrUnlucky