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

Surgery information for tomorrow

Hi guys,
As you can guess, it has been a hectic, emotional, and stressful day (WEEK).  Braeden is packed and ready for his day tomorrow.  He is in great spirits, and his request for dinner out at his favorite restaurant will be granted.  It's the very least I can do.

So on to the point....

Braeden will need to be at Duke Children's Hospital the 3rd floor at 9:15 am to check in.  He is on the schedule at 10:45 am for the surgery.  We were told the surgery would take around 4 hours, and then on to the ICU to begin recovery.

I appreciate all the love, texts, and prayers more than you know.  Braeden has gotten several calls today from people checking in on him and wishing him luck, he is feeling the love as well.

A big thank you to my brother Eric for coming into town to help keep me "afloat." 

Also, a BIG thank you to everyone "behind the scenes" for their offers of help to get my other boys where they need to be. It is overwhelming the amount of love we have been shown.

#BraedenBrave
#MrUnlucky

Keep going forward

Hello to all.  I wanted to write a quick post to let everyone know how much I appreciate the love, well wishes, and the prayers that have been sent and said.

I will update everyone on Tuesday evening when I find out what time the surgery is on Wednesday.

Also, a big thank you to the ones that will be helping with the other kids getting them to school, feeding them, overnights etc.  I am also very appreciative for the gifts of parking passes, and money to cover meals while I am at the hospital.   It means more than you know.  I hesitate to name anyone, because I would leave someone out, I just know it.  My mind is all over the place, and I don't want to forget anyone.

I thought it would be nice if we could "flood" Braeden with get well cards.  He has carefully read the ones that he has gotten so far, and I know he would enjoy getting many more.  Text or message me for my address.

The past week since we found out he would be having surgery has been busy.  It has been filled with radio interviews, family, school work, and lots of turkey.

Speaking of the radio interview, (Bob's Buddies radiothon which supports the Pediatric Brain Tumor Foundation)  this was the first year in the eleven years that I have been volunteering that Braeden joined me on air. These interviews always make me nervous, it's such an emotional thing to talk about, and you never know what questions are going to be asked.  If you had a chance to hear Braeden, you know that he did beautifully during the interview.  I am so very proud of him.  (If anyone wants the audio, I can text it to you.) 

When he answered the "do you ever ask why me?"    His answer was profound and makes me even more proud of him.

 "I have taken ownership, that it was me and I can't really do anything about it, and it is harder to say why me, instead of keeping going forward." 

Seriously, just WOW!!!  I love that kid more than any sentiment I could type right now...

The Bad and The Good

Today was awful...

We met with Dr. Fuchs to go over the results of the MRI that Braeden had yesterday.

The Bad News

The spot/lesion as previously discussed is now officially being called a tumor by Dr Fuchs.  It was awful hearing that word, and even more awful to hear the word surgery.  (I don't know what I was expecting to hear, I was just hoping it wasn't that.)

Dr Fuchs says is pretty rare to have a spinal cord tumor without there being "a source" to cause it. (meaning another tumor or type of cancer)  And it's even more rare because the tumor is located inside of his spinal cord, not "on" his spinal cord. 

Keep in mind, Braeden had a Craniopharyngioma when he was 21 months old. Dr Fuchs is adamant that this spinal cord tumor is not related to him having a brain tumor.

I wholeheartedly believe in Dr Fuchs and his skills.   He performed Braeden's 10 hour brain surgery (along with 2 other brain surgeries) when he was just 21 months old and saved his life.  I know that he will do all that he can for my boy.

The tumor looks to have grown a millimeter in the past month. Dr Fuchs can't be absolutely positive about the actual growth because the MRI's could be showing different measurements in "different sections" of the tumor.

I will attach a picture of his latest MRI, showing the tumor.  Dr Fuchs described it being shaped like a "sausage".

Braeden's worsening hand weakness likely indicates that the tumor has grown.  It just makes  sense, right? (Initially, we were told the two were not related.  How could they not be?) 

Plans were made today to have surgery next Wednesday the 28th.  There was a bit of planning  involved to get all of the teams together.  

Thankfully, they were able to get this accomplished today.

During the surgery, Dr Fuchs will be operating to remove the tumor at C6.  

To do so, he will "be going into the back of his neck, and creating a door" in the area of  C5, C6, and C7.    

He will remove the door to get to the tumor.  

He will also have a "nerve team" that will be there to apply probes to different nerves while he is operating to ensure he doesn't cause any nerve damage that could be avoided.   

This surgery is going to be very tricky and take about 4 hours.   The outcome depends on how involved the tumor is within the spinal cord.  It's definitely not a "cut and dry" surgery.  There are way too many variables that can define what happens during, and after the surgery.   

I have already reached out to the school to let them know that Braeden would be out for a few weeks and to get the ball rolling on a "plan" for him to keep up with his work.  Knowing Braeden as I do, I know he will be worried and concerned about missing school.  Having a plan in place will help alleviate his mind, so he can focus on his recovery.

Prayers are greatly appreciated.

The Good News

Braeden is in good spirits and handling things well.

#BraedenBrave

#MrUnlucky

History Bank

Hello all,

I never know exactly what I am going to say when I start a post.  I guess that is part of the realness of blogging. Right now, I am typing without any true preamble. That is because, I just don't know where to begin.

I guess I will start with the basics...

It is Sunday, Nov 18th, and it was one of the BIG appointment days. It was the day of the complete spinal cord MRI (all 90 minutes of it). 

We will supposedly have more answers about that "pesky spinal cord lesion" tomorrow at our follow up appointment.

Scary times.

I love that child and I am terrified of what we may hear in the morning.  It's so different having a "almost grown up" teenager vs having a "sick" baby.  Trust me, neither are easy and they both suck equally.

I hate that I understand both sides.

As the Mom, to this incredible kid, the thought of even having to watch him process what is happening or could happen is almost too much to bear.   He is my old soul and takes everything to heart.  But I know him, and I know that if he hears bad tomorrow he will make a quick joke to try to make everyone else around him feel better.

Lots of people say I am so strong. They are wrong,

I have never felt weaker.

I took breast cancer on in 2011 (after Braeden's brain tumor diagnosis in 2005) 4 months of chemo, 6 weeks of radiation, and 9 surgeries. That was easy because it was me, and not Braeden. 

Answers are needed to say the least about the lesion and left sided weakness (which has caused more trouble this week that I won't bore you with).

I will end on this note.....

Monday will now a day in my history "bank".  If you all know me, and I would say most you do, you all know I associate all things with a date or a number.

I hope that 11/19/18 will be a good day to remember.

#BraedenBrave
#MrUnlucky

Holding patterns are for planes not people, am I right?

Just a quick Braeden update.

A few of y'all have reached out to me and asked if there was any news this week. 

The past week has been somewhat uneventful from "an appointment" standpoint.  Bart and I have been "tag teaming" and trying to get thru to the Neurologist and the Hand Specialist at Duke we were referred to.   It's been frustrating to say the least.  (It seems that no one cares about Braeden quite as much as we do.) We are hoping to make some leeway this week with more phone calls and emails.

Big appointments are coming up on the 18th,  the complete spinal cord MRI will be done this day.We have an appointment with Dr. Fuchs (his neurosurgeon since he was a baby) to discuss the results the next day.  (The MRI appointment is scheduled for next Sunday at 7:30 AM.  Can you hear the grumblings of a certain teenager we all know and love?)

I would say that we both have a lot of trust in Dr. Fuchs and our difficulties trying to get in with these other MDs will be brought up on the 19th and hopefully he can fast track us if we have not had any success by the time we see him that day.

Now on to Braeden:

Spinal tumor/lesion----No updates till next week about this problem.  Prayers are appreciated, and I mean appreciated.

Left sided weakness as benign as that seems, is causing the most disruptions for Braeden on a daily basis.

On Thursday he told me that "my two fingers in my brace have fallen asleep four times today and that's different and new. Mom when is my appointment?  Things are getting worse."

He is also losing the ability to do simple tasks.  I took a picture on that Thursday (11/8/18) to compare from a picture I took of his left hand on 9/1/18 when everything began presenting itself.  The picture to me is quite alarming.  I will attach the picture to this blog as a reference.  (In the picture on the left is from September, and the right side is from Thursday.)  This picture reflects how much Braeden is able to "stretch out his hand".  Braeden, I think is worried about how quickly things are progressing.  He asked me to send a "comparison picture" to his doctor so that they could see how "bad" things are getting for him. 

Emotionally, I am having some tough days.  I am just being honest and it is what it is.  I am seeing my sweet, quick witted, and bighearted child go thru something.  I mean, this kid has already gone thru more than most of us have as adults.  IT'S JUST NOT FAIR, and not having the answers as to why this is happening is difficult.  I am very appreciative of my friends who let me do the "ugly cry" and are loving me thru this.  I need you all, and I am so thankful for your love and hugs.
#BraedenBrave
#MrUnlucky

Brothers and their unspoken love

As the mom of three boys, I often wonder if "when they grow up" if they will love one another as I love my brothers.  (My brother, Dennis is just a mere 360 days older than me.  I am also lucky enough to have two stepbrothers who I adore and love very much.   Jeremy is almost 46 and Eric is almost 47.   I am the "baby' in the family at the young age of 45.)  We are pretty close in age as are my boys.

I only hope that my boys will grow up to love each other as I love "my bros". 

Right now, that could be considered questionable :)  I am kidding, really.

The twins are 14, and will be 15 next month.  With that being said, they are pretty "self involved"  with their own selves and friends.  Braxton with "a girl" and soccer.  Braeden is busy with marching band, and in his downtime YouTube :).

The twins have always been opposite on so many things.  Braeden is an introvert, Braxton is an extrovert.  They have always had different circles of friends at school.

There are a very few things those two agree on.

Short list as follows:

Bojangles, Carolina Panther's Football, the love of Nike, Adidas, Under Armour clothing, and shoes, their dislike of Science class,  and sleeping

And that's about it...lol

Now on to the point of this post...

I knew I needed to tell the other two boys about Braeden.  They already had some idea that "something was wrong".   Braeden's left hand issues are pretty noticeable and also the amount of school that he has had to miss.

(This is the twins first year of high school, and every class counts.  Braeden has hated having to miss so much school.)

I honestly thought that they both would hear the news and just go about their day.  I was wrong. I told Braxton while we were alone on the way to carpool to get Chaser on Tuesday.   He thought that during the car ride we were going to talk "about girls" and come up with boundaries for his newfound "friend that is a girl". 

Needless to say, I was surprised at how he took the news.  He took it harder than I truly expected.  He had a look of utter sadness on his face when I told him.   I thought, he would say, "ok" and resume back to his regular texting schedule with said "friend that is a girl" mentioned above.  But he didn't and we tried to navigate through the unknown together during that short car ride. (Keep in mind this kid is too cool for emotions and tears, and they were both present.)

I think I am doing something right with that kid.

On to Chaser....

Chase and I were on the back porch this past Friday, when I told him about things.  I don't think I gave him enough credit to be able to "handle" everything, and I learned a valuable lesson from him that night.  (To say the least, Chase is not my most mature child, and I had questioned if he even needed to know.  I didn't really think he would understand or "care".)   I was very wrong.

I told him, and then as he broke down in tears, I held him and we cried together. Once, he calmed down, he asked me the best questions about things that have happened thus far, and the things to come.   I answered them truthfully, and I am really proud of  Chase and his thought processes.  (I thought if it didn't concern FortNite, he wouldn't care.)  Happy that I was wrong about that.

Judging the reactions of both Braxton and Chase, I absolutely believe that my boys are going to grow up to love and value each other not only as brothers but as friends too.  And that makes this Mama very happy.

(Below are a few pictures taken from my phone of our family pics today.  Can't wait to see the photographer's shots.)

#BraedenBrave
#MrUnlucky

#MrUnlucky

I wanted to share a funny moment from this morning.  Over breakfast, I mentioned to Braeden that I had started a blog to document everything that was going on with him.  I asked him what he thought I named the blog and what his "hashtag" was.   He immediately cracks up and says, it should be named  #MrUnlucky 
Another reason, I love that child.....He just rolls with the punches. 
#BraedenBrave
#MrUnlucky

#BraedenBrave

I don't know really where to begin. (Deep breaths, deep breaths)  OK here goes......

Hi everyone, if you are reading this, it is obvious we are friends, and or family.  This will be my second blog that I have written.  I found that having a blog when I was going thru breast cancer was the easiest way to keep my family and friends updated about what was happening with me.  It was also therapeutic for me to write about what was going on.

(Disclaimer: I am not an English major, so please excuse any grammatical errors I may make.  I will likely throw in a few sentences with prepositions at the end to cause my brother Eric to get his red marker out :)

I am compelled to start this blog about Braeden because of the issues he has been dealing with the past few months.   It is also a good way for me to keep up with all of his appointments. I will try to keep it brief and give you all a summary of what is going on with him thus far.  Bear with me, this entry will have a lot of information, that I am solely using for my own reference.  I anticipate that future posts will be shorter and to the point.  

The weekend of Labor Day, Braeden brought it to my attention during a game of pool that he was having trouble holding his pool stick.  I told him he just wanted me to go easy on him and let him win, ha!  But he then showed me his hand, and how he was unable to "stretch" his fingers.  He told me at that time, he initially noticed the issue at school when he was trying to type, and was unable to "reach" certain keys.  Since that point,  I have become his personal typist for all of his school work.  He uses a laptop primarily for school work.   He is pretty happy about that :)

That was the beginning of this journey we are on.  Really, really short version of what has happened since that point follows:

Fast forward two months, the child has been busy with various appointments.  Off the top of my head he has been seen by five different doctors, and has had more than a handful of diagnostic tests performed.  His hand strength is decreasing and he is having more difficulty performing simple tasks.  For example, turning the lock on the door, unplugging a/c power cords from the wall, opening packages of food, opening his retainer case, etc

Initially, all of his symptoms, were pointing to an issue with his brachial plexus.  As a parent, you don't want any kind of health issue for your child, but it was somewhat of a relief that we had "a path" we were going down to possibly treat what was going on with him.  His first MRI results have since ruled out that the issue is not with his brachial plexus.  A 2nd MRI showed  a tumor inside of his spinal cord.

We are continuing down the path to try to figure out what is going on.

(Below is the part that is mostly for me to keep up with all that has happened thus far.  Feel free to skip ahead to the last paragraph)

Longer version is as follows:  

Night he first told me the issue (9/1/18)

First step, see his pediatrician.  (9/4/18)

Second step, pediatrician suggests we see orthopedics. 

9/11/18 Third step, orthopedics suggests we see neurology,  OT, and have EMG testing 

9/11/18  EMG done--Braeden said it pretty much sucked and was not fun at all.  Braeden has a high pain tolerance, so for this test to have bothered him, I know it must have been painful for him.

9/13/18  EMG points to a potential brachial plexus issue

9/17/18 Neurology suggests a MRI to rule out brachial plexus.  

9/19/18 at OT,  the testing showed that he only has about 25% of the strength in his left hand as his right.  He began wearing a hand brace this day to help prevent further contracturing of his hand.  (His left hand is very "clawed")  

9/24/18 1st orthopedist had suggest we see a 2nd orthopedist for the EMG results and further evaluation, which at that appointment, the 2nd orthopedist suggests we see a hand specialist at duke (2nd orthopedist was not my favorite, I felt he was way too blase' about his case)

9/25/18 Brachial plexus MRI was normal. 

10/11/18 saw a hand specialist (who needed his test results to give us more information, MD to give a call after he gets all the info)

10/16/18 Neurology suggests a cervical spine MRI because of a "spot" that was seen on the BP MRI.  

10/21/18 cervical spine MRI performed

10/22/18 neurology called and suggests that Braeden is seen by Dr Fuchs (Braeden's neurosurgeon that did all of his surgeries when he was a baby)   ASAP because of a tumor/lesion that was seen on his cervical MRI. (3mm tumor INSIDE of his spinal cord)  

Big SCARY words were used this day----chemotherapy, radiation, and surgery----It's heartbreaking to hear these words, and then to know you have to tell your almost 15 year old that already has been dealt some tough cards in life, he now has "something" else to deal with.  

We decided not to tell Braeden last week, because of mid-terms at school.  We didn't want him to be distracted and worried about what was going on.  He is already concerned about all the school he has missed because of some of the appointments above.

10/23/18 Braeden had an appointment with his endocrinologist, and she told us that she possibly will decrease his growth hormone.  Not only does GH cause the good to grow, it causes the bad to grow as well.  

We decided to talk to him about everything before his appointment with Dr Fuchs this past Monday (10/29/18)  The appointment with Dr Fuchs went as well as it possibly could have gone.  Dr Fuchs is perplexed to say the least.  Basically, the spinal cord tumor/lesion has nothing to do with his left sided weakness.  So we have two different issues to figure out.  The left sided weakness and the tumor/lesion. 

The plan as of now is to for him to have another spinal MRI, and to see a Duke Neurologist.  Dr Fuchs wants to have his MRI done at Duke, he is not convinced that what the other radiologist saw and called a tumor that would need chemo/radiation/surgery is actually a tumor.  His reasoning for thinking this is, he says that most spinal cord tumors  present on a MRI as if a snake has eaten something, and there would be a "bulge".  Braeden's MRI doesn't show the bulge.

The next MRI is scheduled for 11/18/18, and his follow up with Dr Fuchs to discuss the results is on 11/19/18.  Our hope with this MRI is to get a clearer picture of the "spot", and to also rule out that there are no other tumors/lesions.  After this MRI, a spinal tap may be ordered to rule out any autoimmune disorder.

10/31/18 Braeden returned to OT to get his brace fixed, although the duct tape I had used to "fix" it was effective, he definitely needed another one :)     They have ordered him a more sturdy brace to wear .

They repeated the strength testing on this day, and in the 6 weeks between those appointments, he has had further weakening of his left hand.

(9/19 grip strength was between 15 to 16 lbs, 10/31 his average was between 6 to 10 lbs. His right side has a grip strength of  60 to 64 lbs as a reference)

(9/19 pinch strength was 2 lbs, 10/31 pinch strength was 1 lb, his right side has a pinch strength of 10 lbs as a reference)

Seeing this on paper definitely causes me anxiety, and a need for answers quickly.   These results scream to me, that we need to GET MOVING and find an answer as to what is going on with him.

We reached out to the hand specialist to try to get that part moving yesterday and today.  Haven't heard from him, as of yet.

I also reached out to the Duke Neurologist yesterday, as of now they are reviewing his EMG and his MRIs to decide what "clinic" he needs to be seen in.  I will be giving them a call tomorrow for an update on that and hopefully an appointment.

Quite simply, the child amazes me with his strength, and his positive attitude.  I know it wasn't easy for him to hear what he heard on Monday, but he handled it with true grace.  I only hope that I can be half the person he is one day.  I love that child beyond words.  Prayers are greatly appreciated.

#BraedenBrave