Jimmy V and a Duke education

Just wanted to update you all, and let you know that Braeden had his first Avastin infusion yesterday.  He will be getting these infusions every two weeks at the Jimmy Valvano Day hospital located on the 4th floor of the Duke's Children's hospital. 
Seeing Jimmy's name on the wall at Duke brought a smile to this NC State fan's face :)  Not to mention the win NC State had against Duke last night.  (Whoo hoo 88-66)   See miracles DO happen!!!

After yesterday, we all now understand that infusion days will be an all day adventure. We were on campus for almost 6.5 hrs yesterday.

Braeden will need to have labs done to ensure that his values are good.   One of the major concerns when taking this medicine is the possibility of kidney damage.  The medicine can cause a condition called proteinuria which causes severe protein loss from the kidneys which can lead to kidney failure and other not fun to read about bad things.   They also have to ensure that his blood pressure stays stable during the therapy.  The medicine can cause it to go up to dangerous levels.   During the 1.5 hour infusion yesterday, they checked his BP every 10 to 15 minutes.

Once the labs are drawn, we will wait for the results.  (Braeden required the ultrasound team on both Tuesday and Wednesday to come and place his IV. We are hoping in the future that gaining access will not be so difficult for the IV team.) Once the results are back and we are told that they "have passed"  the attending MD will call the pharmacy and have them compound and make Braeden's infusion.  The goal is for them to have the medicine ready within 2 hours.  We are given a pager and are allowed to walk around, find food etc.

Tuesday evening, I spoke with Braeden's caseworker from school, and she suggested that we "hospital home school" him.  Basically, this means a WCPSS teacher will come to our home and tutor and catch Braeden up on his school assignments.  We also decided to drop his AP Geography class.  He definitely doesn't need the added stress of an AP course. 

At Duke yesterday, we met with a teacher that Duke has arranged to meet and "teach" Braeden while he is at Duke for the next six weeks while he is there daily for radiation.   The Duke teacher got all of Braeden's class information, and should be in close contact with his teachers to get his assignments.  The hope is that Braeden will not fall behind.  The bigger hope is that Braeden will not be stressed about school and be more focused on his health and getting better.

Braeden in general is doing fair.  He is not sleeping well at night because of his high dose steroids. He is experiencing neck and shoulder pain that is bothersome.  His hands are obviously still a big concern. 

Today he was able to go to school for the first time in almost a week. School dismissed 3 hours early because of the forecasted snow.  School must have tuckered him out, he just woke up from a 2 hour nap.   Today was his official last day, until after his 6 weeks of radiation is finished.
I have attached a picture of him during his infusion yesterday.

Monday our radiation adventure begins.

#BraedenBrave
#MrUnlucky

Imagine

Imagine being a guitarist with a broken hand.....

Imagine being a singer with no voice.....

Imagine being a comedian with no jokes.....

We all have things that are important to us.  For instance, when my grandfather was alive and was getting older, one of the things that he eventually had to give up was his riding lawn mower.  I know that sounds silly, but the man loved riding that thing, and for him to lose that freedom was a difficult thing for him to handle.

Marching band and bowling are important to Braeden.... 

Braeden had a rough time at bowling this past Saturday.  It has come to the point that he is unable hold on to his 14 pound ball that he typically uses to bowl. It was awful to watch his reaction realizing he couldn't bowl.  Braeden being Braeden is going to get back out on the bowling lane this week, and try to bowl with a lighter 10 lb ball that one of his coaches Melissa ordered him immediately that morning. I appreciate Melissa jumping in and  hopefully coming up with a solution that will allow him to continue to bowl.  Fingers are crossed.

Braeden went to his OT yesterday, and had his strength testing repeated.  Last Monday his grip and pinch strength measured 25 lbs/4 lbs respectively.  Yesterday his values were 19 lbs/ 3 lbs. (For reference, in October 2019 his values were 64 lbs/ 10 lbs.)  I emailed Dr Landi, and Dr Fuchs with the information.  Needless to say, they were appropriately concerned and we were to keep our appointments today with the radiation oncologist.

We met with Dr. Larrier today, and I can honestly say that the only bright spot during the appointment were the incredibly funky and bright socks she was wearing.  Picture knee high aqua

socks with big colorful pink and yellow butterflies all over them.

Otherwise, today was heartbreaking.  Braeden's case is rare and this complicates things a great deal.  The doctors are perplexed.  They can only assume that the reason that his MRI is unchanged but yet his right hand is deteriorating is that tumor has infiltrated the surrounding tissue in his cord.  Their best guess is that the infiltrates are so small that they cannot be "picked up" on his MRIs. 

So what will they radiate then?  They are planning to radiate a 1.5 to 2 inch section surrounding his C-6, where the tumor was initially found.   If radiation wasn't scary enough, them actually doing it blindly and not having a "target"  is terrifying.  Lots of risks are involved.  

Braeden's tumor was unusual in the fact that it was located "inside" his spinal cord, not "on" his spinal cord.   This is another complication.  If we don't do the radiation, the infiltrates could continue to grow, and Braeden can lose use of all of his extremities.  If we do the radiation, we are running the risk of causing damage to his cord, because of the size of the area they are radiating and also the fact that they will be aiming for the inside on his cord.   Not to mention, that the radiation can actually cause a different cancer down the road.  

As parents, we are devastated, and want to be sure we are doing the right thing for him medically.  Things are being fast-tracked quickly, and I appreciate the urgency a great deal, but it also makes me question myself.   Do we need to go for another opinion at one of the bigger children's hospitals out of state?  His case is so rare. Who is to say that anyone would know how to handle this any other way than what Duke is planning.  We don't have a lot of time to waste, his worsening strength testing is proof of that.  

I called my SIL Sara today, and asked her research out some possible options for us. Unfortunately, she is familiar with traveling out of state to seek care for one of my nephews with a rare condition.  She has sent me tons of information this afternoon.  Thank you Dr. Bone :)

I have called Dana-Farber in Boston (#1 Children's hospital for neuro stuff) , and left a message.  They should return my call within 24 hours.  It can't hurt to have a phone call.  We don't have weeks to wait for an appointment, but Sara shared with me that they would possibly be able to do a video consult.

Braeden had his simulation done today.  This involved them draping his upper body and face with a "mesh towel" that conformed to his shape and hardened.  I asked him if he did a selfie with all of that on, he says he thinks so, but he couldn't see through the mask.  And he wouldn't show me his camera roll, lol.  

After he did the simulation, we were free to go.  He is scheduled for his first radiation appointment on Monday the 24th.   

Dr. Landi called me when I was still on campus, and the plans were made for him to have a MRI to rule out brachial plexus.  (This is a cover all bases MRI, none of the doctors believe this is the issue, but they want to rule out everything.)   He had that MRI this afternoon.

Tomorrow we are to be back to see the oncologist, and Braeden will begin the Avastin infusion therapy.  Dr. Landi is "shocked" to put it lightly that the steroids have not caused his OT numbers to improve and how much they have declined over the week.   (Of note, Bart purchased a "contraption" that we can measure his strength at home.  Over the past week, we saw those numbers slowly go down.  Luckily, the contraption seems to be reliable and matching up with OT's numbers.  I think this is helpful for us to have and to be able to trend daily.)  

I have emailed Braeden's counselor at school, and hopefully we will be able to come up with a plan to lighten his load for the next 6 weeks.  (A big thank you to my brother Eric, who is a school administrator and has given great advice.)

My boy needs prayers, I am not sure how much one child is suppose to endure.   He truly has the best attitude, and is more concerned about everyone else.  But I know he is scared, and his mind working overtime.   He is a part of each conversation, and honestly the things he hears has to scare the hell out of him.   

#BraedenBrave

#MrUnlucky

Plan A, or B, or (you get the idea)

Lots of plans have been made since our appointments yesterday.

Braeden had appointments with both Dr. Fuchs and Dr. Landi.  They both feel that Braeden needs to be fast-tracked for radiation.  At our appointment, we were told that the tumor board would be meeting  at 5pm to come up with a "plan".

The "tumor team" met as planned to discuss his case and Dr L called us last night to give us an update of what the team felt would be best for Braeden.

       

They are going to take what little tissue they have in the freezer from Braeden's surgery and attempt to get pathology in a new way, to see if his tumor would be responsive to chemo.  They are rushing the analysis and hopefully will have an answer soon.  (They think that there is only a 10% chance that his glioma would even be responsive to chemo, but they want to cover all bases.)

If his tumor ends up being the type that is chemo responsive, we would begin chemo and delay the radiation.   I remember last year it took FOREVER for the pathology to come back after surgery.  And we were told at that time, that there was not enough sample to figure out what type of chemo he would need.    I am not hopeful that they will have any results by the time we return next Tuesday.

Braeden started on a taper dose of steroids yesterday to see if that would help alleviate some of his symptoms he is having with his right hand.  Apparently, he is on a high dose, and we can expect side effects that are not ideal.   Hopefully, these side effects will be just a small bump in the road for him.

        

Braeden has been scheduled to see Dr. Larrier who is the Radiation Oncologist on Tuesday the 18th at 9 am, and then the plan is for him to have his simulation appointment that same day at 11.  

      

We are also planning to see OT on Monday the 17th to recheck his strength on his right side.  His results from his appointment on Monday (Grip 25/Pinch 4). His results back in October 2019  (Grip 64/Pinch 10).  Seeing those numbers only reiterates that there is a problem that we need to solve ASAP.  

If Braeden's OT values are worse on Monday, Dr Landi thinks he will likely start an infusion medicine called Avastin, this not a chemo drug, but rather an anti-cancer drug.  Just reading about this drug makes me want to vomit.  I can't even wrap my head around it right now.  The radiation and possibility of  chemo is scary enough.  

That's all I can share as of now.  

There are still lots of unknowns.  Radiation or chemo?  Avastin or not?  

Emotionally, this is difficult, and that is all I can say about that.  

Prayers are appreciated as we try to navigate our newest Duke/Life balance.

#BraedenBrave

#MrUnlucky

        -

Deja Vu

It has been almost six months since my last post.  As the saying goes, no news is good news or in our case no blog is good news. 

There are so many people that genuinely love and care about Braeden, and I wanted to give an update on what happened at his appointments yesterday at Duke and what he is now facing.

About a month ago, he/we started noticing subtle changes concerning his right hand.

(Remember, this whole MESS started with his left hand 17 months ago, and after 3 months he was diagnosed with a Grade II spinal cord tumor called Astrocytoma. He had his surgery November 28, 2018, and Dr Fuchs was not able to remove all of the tumor.  Since the tumor is considered a Grade II ,there has always been a chance of regrowth.  Since, January 2019 he has had a MRI every 3 months to ensure that the Astrocytoma has not changed from his baseline after his surgery.)  

These changes have come on rapidly it seems.  He is struggling with holding his pencil and writing while at school and at home.   He also is having issues with weakness in his right hand, and holding his trumpet.  The actual strength of his right hand has decreased dramatically.  His hand is also showing signs of muscle wasting.  (It is really a deja vu moment.)

I picked Braeden up from school yesterday and off we went......

After the MRI, we headed over to Dr Fuch's office get the results.  The PA did Braeden's first assessment, and went over all the old and new issues.  Fast forward and Dr Fuchs comes in and does his assessment.

The long and short of it goes like this.
   

 MRI is actually unchanged, and he doesn't see any new growth.   The problem and what he is very concerned about is the "clinical and physical changes" he sees with his right hand.  He said the evidence he sees it is likely some growth of the tumor, and it is now affecting his right side. 

Of course, y'all know me and the questions start flowing out of me.

If the MRI is unchanged how do we know its the tumor?  The tumor growth doesn't have to be big to cause an issue, and it is possible that you can't see it on the MRI.

What's the treatment?  Prepare yourselves that there is a great probability that he will need radiation.  (Dr Fuchs called Dr Landi the oncologist who he wants Braeden to see, and they both believe that he is going to need radiation.)

Is there any other possible thing that could be causing the issues?
The only other thoughts he had were the possibility of it being a peripheral (arm) issue, and he needs to get an EMG done. This test will gauge his muscle health and his nerve response.  (Braeden said the last one he had was painful.)    He also wants him to have another brain MRI  He doesn't want to "jump" into radiation without clearing those two tests.  He doesn't think the EMG or the MRI will show anything, but he wants to have the peace of mind that he has ruled out everything before moving forward.

Dr Fuchs wants things to move quickly with getting the testing done ASAP. He understands and shares one of our major concerns is that if Braeden's right hand ends up being as nonfunctional as his left hand currently is, that it would have a  detrimental effect on Braeden's everyday life.  He has so many struggles behind the scenes that most don't see or would even think about with having "one" bad hand. 



THE PLAN 

Lots of appointments have been made over the past 24 hours and we are very thankful for that.


Monday the 10th-Braeden has a brain MRI and an EMG, and an appointment with OT. The OT appointment is mainly to retest his strength in his hands.  He had strength testing done on both hands over the course of 2019.  It will definitely be interesting to see how much his values have gone down.

Wednesday the 12th -Braeden has an appointment with Dr Fuchs and Dr Landi to go over results and decide on the treatment plan.
     

Of course, Braeden in his own way absorbed and took things in as we were all in the room.  It was a quiet car ride home,  We talked a little about what it meant to get radiation.  How many treatments, did it hurt, how long does it take, etc?

He also asked on the way home if I would be his emotional support for-----(when he said this, I thought oh no, he is going to break down and I won't be able to hug him in this crappy 5"oclock traffic, lol ) but then he finished his sentence and said for his AP Human Geography homework.

He always amazes me, the child hears the worse news and all he is worried about is how late we are getting home from Duke, and having to get all of his homework done.  Our night was good after getting settled, and he was his cheerful self.  And yes, I was happy to be his emotional support for AP Human.

We talked again at bedtime, and he is extremely concerned about missing school, missing jazz band, missing drums, missing bowling, etc    He has a busy schedule and I tried to ease his mind.  Right now, we have to take things appointment by appointment and it will all get figured out.....
Prayers are greatly appreciated.

#BraedenBrave
#MrUnlucky

     
     

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