Final poison

Braeden had his final Avastin infusion today.  I am happy that this part is for over him.  Avastin works differently than chemotherapy.  Chemotherapy attacks the cancer cells of the tumor.  Avastin blocks the growth of new blood vessels that feed his tumor.  The side effects of Avastin can be serious, and typically not recommended for use in children. (I know that Braeden, is a man-child, but until he turns 100 he will always be my baby, lol.) 

So what is next?

I asked this same question of the medical team today. 

• Following up with Dr. Smith about the SSEP. (The testing has not been ordered, as of yet)
• Following up with OT at Duke to try to get an appointment.  Duke OT is only seeing via video, and Dr. Smith would like him to be measured for a new brace.
• Spinal Cervical MRI on 5/13

Then what?

I don't know, but this "journey" is not over.  We appreciate all the prayers and can't wait for this chapter to be complete.

Love to you all!

#BraedenBrave

#MrUnlucky

I will end with the funniest Braeden-ism of my day.  We were navigating our way through Duke, and I missed a turn.  Braeden said, "Wow Mom." I told him to shush, that I have had cancer and my chemo brain is at work lol . He then replied, "Mom, you had cancer in your b***S, I have had cancer in my brain and my spine, and I still know where to go."  

He makes me laugh at the most unexpected moments,  Love him so much!

No alarms, no appointments, and apparently no answers...

Braeden finished his 6 weeks of radiation this past Thursday.

It has been nice not having to go to Duke everyday, and it's been even nicer not to have to set those early morning alarms.

He is having a pretty quiet week, and has been working on school work and trying to get caught up on all of his missed assignments.

His last Avistan infusion is next week. 

He has a new cold spot on his right ankle, that can't be explained. This means that now all 4 of his extremities are showing some sort of unusual symptom.

His steroid "hunger rages" have definitely calmed down. This makes the short order cooks,who live with him, jobs easier.

Dr. Smith, the Neurologist called us on Saturday. The call was long, and we still have no real answers. Plans were made on Saturday for Dr Smith to get in touch with Dr Hussain, and schedule a test called SSEP (Somatosensory evoked potential).This test will measure his electric signals of sensation between his brain and spine. They will be looking at 3 different waveforms to try to pinpoint where the new issues are originating.

1st waveform will measure the brain's response to the the electric pulses.

2nd waveform will measure the spine's response to the electric pulses.

If the 3rd waveform ends up being slow or abnormal, it is likely the issue lies within his spine.

If both the 1st and 2nd waveform are abnormal, this will mean that the testing is unable localize the issue. And we are back at square # who knows by this point.

I think that we all are frustrated with the lack of answers. As his Mama, I want this crap to be done. I want Braeden to get back to his normal routine. I just want him to be a kid without the weight of this unknown demon to bear. I know his medical team is working hard to try to get the answers to his case. I told Braeden, he didn't have to be SO unique. Like really kid, quit stumping all the brilliant doctors at Duke and across the world.

Blogging allows me to have a visual timeline and record of what is happening with Braeden.

Blogging allows me to vent my thoughts and feelings.

Blogging allows me to tell you all, that I love you and I appreciate your support and prayers.

Below is a small part of Dr. Smith's visit notes, after seeing Braeden. I know it's a confusing read. I included part of his notes for my records. Feel free to skip to the end of this post for a funny Braeden-ism.

"This is a perplexing, and very unfortunate, case. I reached out to a neuromusuclar colleague here at Duke to discuss this case further, and I still feel that central (cord) pathology could explain the symptoms. This is largely due to the intact ulnar and median SNAPs, normal median CMAPs and relatively preserved ulnar CMAP amplitudes (right) - all in very weak muscles. Furthermore, there are other weak muscles that demonstrate normal findings on EMG (ie, RIGHT EDC). The low-amplitude LEFT ulnar CMAPs could also be explained by the underlying severe muscle atrophy as opposed to true denervation. To some extent, there may be a combination of both peripheral and central etiologies.

I do not have an answer at this time to explain Braeden's clinical condition. This is terribly unfortunate given everything this young man has had to endure. Regarding further testing to possibly help with localization, media and tibial SSEPs may be helpful, especially given the low concern for a significant peripheral neuropathy. Lower extremity nerve conduction studies could be performed prior to SSEPs to rule out a tibial neuropathy (which would confound tibial SSEP interpretation), but given the lack of any concern for such on exam, I do not feel that this is necessary.

Finally - I suppose it is possible that a "Hirayama-disease-like" picture could be contributing as well. Given his known C6 tumor, he does not meet the definition of Hirayama disease. But, a dynamic (flex/ext) C-spine MRI might be informative if it demonstrated significant anterior displacement of the cervical cord upon neck flexion. This is a long shot, but it is the only other consideration that comes to mind. There is no clear cord atrophy in the C6-T1 region in my opinion.

I am sending several screening labs for "idiopathic" peripheral neuropathy, but Braeden's clinical picture really is not consistent with that diagnosis.

I will discuss my assessment with Dr. Landi, and if he agrees, then we will proceed with SSEPs and consider flex/ext C-spine MRI. "

I will leave you with a "Braeden-ism"

In the car, on the way to Duke the other day. I told him how brilliant his answer was to the question I had asked him. He replied, "Mom, it must be all of that brain enhancement I had when I was a baby. You know? Those 3 little brain surgeries."

This child has my whole heart.

#BraedenBrave

#MrUnlucky

A post from Uncle Eric

 I am lucky.

My children are lucky.

My nephews are lucky.

My siblings are lucky.

We are all so lucky to have Uncle Eric.

My precious boy will finish his 30 radiation treatments tomorrow. We are still facing so many unknowns about his condition.  There are still too many unanswered questions. This journey will not end tomorrow.  I am so thankful for our family, friends, and all the prayers that have gotten us this far. We are exceptionally blessed to have Uncle Eric in our corner.

Below are his words about Braeden.  

When I was younger, I always knew that I wanted to be a parent.  I felt that it would be one of my life’s greatest accomplishments.  To be able to raise a child, to teach them, and to help them develop as an individual of character who will one day go forth and make a difference in the world because of your influence was a challenge I eagerly looked forward to accepting.   Unfortunately, in my twenties, I learned that would not be possible for me.  It was a difficult truth to learn and to come to terms.  What I did do, however, was decide that I would be the BEST uncle that I could possibly be when and if given the opportunity.  I am now blessed with five amazing nephews who I love more than life itself.  Each one has a personality as unique and as special as the individuals they are, and all five are highly intelligent and talented with varied interests.  Among them, there is Braeden, my oldest nephew.

Braeden has always held a special place in my heart.  I have been there with Braeden as well as my sister for every significant surgery, treatment, and milestone in his life whenever humanly possible.  Since the birth of my three oldest nephews, my sister has done an extraordinary job keeping me informed and a part of everything that happens in their lives, almost weekly.  I am fortunate that those boys always want me to be included in the things they do.  Braeden, for one, texts me often to say hello, to invite me to an event, a trip, or activity, or to simply say “I love you.”

Braeden has always been an old soul who I have always admired for his courage, his perseverance, his positive attitude, and his gentle spirit.  I cannot imagine what he thinks about when he isn’t sharing his feelings with us.  What are his hopes, his fears, his dreams?  He feels deeply and is highly reflective.  He is inquisitive and seeks understanding.  With all that Braeden gives the world around him (and it is so much), the world owes him much more.  For those who do not personally know my nephew, he is one of the kindest young men one could meet.  He is loyal to his friends and family, and he has a heart as big as the moon. He is a man of integrity.  As Braeden ends his radiation treatments this week, I continue to pray that the doctors at Duke will find the answers they seek so this special young man, this loving boy, will once again find some “normalcy” in a life that was already rife with challenges for him, challenges that he was navigating well, but all challenges that I would take from him in an instant if I could.  He has struggled enough, but I know that if anyone can rise above them with an attitude that can teach us all a lesson in humility, kindness, and understanding, it is Braeden.

I felt compelled to share this perspective of Braeden.  Though I am in the arena with her, his mama is his BIGGEST advocate.  So, as we pray for Braeden, let’s make certain we include her, my beautiful sister.  She has the heart of a warrior, but inside I know she is scared.  Let’s pray that his strength, his feeling, his sensations, and his “normal” way of life returns.  Let’s pray for healing and a lifetime of happiness.  No one deserves it more than my nephew Braeden.  I love you, buddy.

We love you, Uncle Eric!  

#BraedenBrave

#MrUnlucky

Just a few words or phrases you don't want to hear at an appointment.

Perplexing

Puzzling

Far fetched

Unsure

Confusing

Quite the mystery

Never seen this before

Nothing makes sense

I don't know the answer

I need to brainstorm with colleagues

I need to dig into literature

and the four letter word that keeps coming up

RARE

The above words and phrases pretty much sum up a lot of today's discussion.  We met with Dr. Smith today who is a pediatric neurologist.  We were very lucky to get a face to face appointment.  He was very thorough and spent over two hours with us.  Duke has stopped all face to face appointments. The only time a patient will see a MD in person is if the situation is emergent or urgent.  Today, at our oncology appointment, we were only able to speak to the doctor over the phone.

(I loved that he wrote down his history with a pen and paper.  He said he had studied up on Braeden's case, but he wanted to hear from Braeden what was happening.  He wrote 2 pages worth of notes. I sure hope that something he wrote will solve this mystery story we are in.) 

Simply stated the doctor just doesn't know what the heck is going.  Braeden's case is just that rare.

Current Issues

Right and left hand weakness.  His left hand has about 20% functionality per Braeden.  Braeden guesses he has about 60% functionality with his right hand.

Left leg and foot tingling/numbness doesn't seem to be worse from last week.

New Issues

He is now experiencing "cold spots" on his upper leg.

Rare cases take time to figure out.  Obviously, we want answers.  This Mama needs an answer.  This child cannot keep losing function of his extremities.  (Positive note, Dr. Smith was pleased with the strength of his left leg considering the amount of numbness and tingling and lack of reflexes he has on that side.)

Big word of the day

Hirayama, this is his best "far fetched" guess as to what might be going on with him, above and beyond the spinal cord tumor.  I am trying not to be a internet doctor,  but some of his symptoms definitely resemble this condition. (This is a rare cervical myelopathy that presents itself as a slowly progressive atrophic weakness of the arms and the hands.)  His left foot and leg issues don't fit this diagnosis.

The Plan

Dr. Smith is going to collaborate with his neurology colleagues and brainstorm about his case.

An EMG and another MRI may happen after the brainstorming session. 

1. EMG of the left leg-this will rule in or out peripheral neuropathy.  
2. MRI flexion study-basically this is a type of MRI that they will have Braeden bend his head back and forth and measure any compression of his spine that may be happening.  This type of MRI is not typical, and he is going to see if it is possible to be done at Duke.

Dr. Smith is going to take another look at his full spinal MRI from last week, and also ask the radiologist to review again.  He wants to ensure that there is no ligament thickening that could possibly be compressing his spine.  

The doctor ordered a bunch of labs.  (These are to rule out the simple things, before we continue to tackle the not so simple.)  Dr. Smith thinks that all of the labs will come back normal.  Braeden and I were just hoping he had blood left after filling those vials.  

For now we will continue to wait, and hope that the mystery will be solved soon.

#BraedenBrave

#MrUnlucky

BUT is such a BIG word

Below is part of an email that I just received from Braeden's Neurology Oncologist.   I read it as positive news, BUT I can't help being worried and concerned about what in the heck is causing the leg weakness.   The kid has two hands and two feet.  As of now, 75% of his extremities are misbehaving.  Answers are definitely needed.  

#BraedenBrave

#MrUnlucky

Waiting+Worry=Overthinking

I was hoping that I would be able to have more answers before posting a new blog.  I don't want to "over blogged you guys out".  I have heard from several people wanting an update, and this is the easiest way.

This past week has been pretty busy for Braeden at Duke.  He completed ZAP 20 yesterday.  He is tired, but is hanging in there.  Only 10 more to go.

He is already planning his "I done with this radiation crap party."   Last night, he momentarily forgot about the CV and was planning the restaurant, the guests and brainstorming what kind of gifts would be reasonable for a kid going through what he has gone through to receive.  
I suggested a great gift would be a journal.  He was not amused.. (He doesn't know it, but I have already gotten him a radiation graduation gift that he will love.)   His celebration may have to be a Facebook live stream with our family and friends watching from afar, and us eating grilled cheese sandwiches and soup, lol.    

He has now tapered his steroid dose to once a day.  The hope is that his hunger and the acne from the medicine will calm down a bit.

He had his 3rd Avastin infusion on Wednesday.  His hand strength was measuring around 18 to 19 on his right, and 2 on his left before starting the Avastin and the steroids.  This weeks average is between 21 and 24 on his right and 3 on his left. 

This past Monday at Duke, they initiated a more in depth screening process because of the CV. On Wednesday, he was immediately given a mask after he reported having a sore throat.   He was tested for the flu and strep.  Both of those tests came back negative.  (Any good news, is great news.)

Braeden's radiation oncologist thinks that his sore throat stems from his radiation treatments.  He is being ZAPPED in his neck area, and it makes sense to the team that he would have a sore throat because of the location of the ZAPS. 

I wrote in last week's blog that Braeden was having left leg weakness and tingling.  The doctor's were concerned and we were to report any worsening of those symptoms.  Unfortunately, Braeden's left leg weakness and tingling is worsening and seems to be moving up his leg.   A full spinal MRI was ordered was ordered for Thursday afternoon.  His other MRIs have typically been cervical spine MRIs.  The hope is that the full spinal MRI will give us answers as to why his left leg is "now misbehaving." We were hoping to get the results yesterday.   At this time, we still haven't heard from the doctor.

There was a very strange vibe at Duke this week. Anyone that knows the parking decks at Duke, can tell you what a PAIN it is to find parking.  I typically allow at least 30 minutes to park and to walk to the clinics.   The decks were empty this week.  We found parking on the 1st and 2nd floor all week.  I usually end up going to the 7th or 8th floors (top floors) at Duke North, and the 5th floor(top floor) at Duke South.   I am happy that people are taking the CV and the quarantines seriously.  I don't want to even think of what would happen if Braeden were to catch it.

Waiting+Worry=Overthinking  
It's so hard not to worry and overthink.  

One of my most precious gifts is struggling...

#BraedenBrave
#MrUnlucky

Just another "Hump day"

Ongoing Issues

Radiation therapy- Today, he had "Zap" number 13 (only 17 more to go).   So far so good, he hasn't experienced any burns as of yet.  He says it is a quick 15 minutes and he gets to listen to good country music.   The staff is great, and it was really nice today that when a certain "Mama" forgot her wallet in her work bag at home, and had no way to pay to get out of the parking deck.  They without question, gave me enough free passes to pay the fees. 

(I haven't had luck with parking decks recently.  Just last week, Braeden and I got "stuck" in a deck because my wallet demagnetized my exit ticket and I couldn't pay. Picture pouring rain, no attendant, and the number to call for help was the listed as the City of Durham.  Luckily, it went much better than I thought, and the girl from afar was able to pull me up on her cameras and help me get out.)

Right hand and increasing atrophy-We have been testing the strength of his hand at home to ensure that his grip strength numbers aren't worsening.  Over the past few weeks, his numbers have improved from 17 pounds to around 21 pounds.  (For reference, his grip strength in October 2019 was 64 lbs).  We happily accept this small victory.  Any improvement is a positive.   My concern is how much smaller and atrophied his right  hand has become in the last month.  I will attach a picture of his hand from 2/4, 2/18, and today.  It is clear how much smaller his hand has become in just a few weeks.  In bringing this up today, to the doctors, they all seem to agree that his hand is trying to catch up to the damage that has previously happened.  They are all encouraged that his grip numbers are not getting worse.  Plans are being made for Braeden to begin OT therapy with the focus on his right hand.

Decadron-These little steroid pills pack quite a punch.  They cause non-stop hunger, weight gain and significant acne.  They don't seem to keep him up at night as they were in the beginning.  We are tapering his dose every few days.  Hopefully, once these are finished, he will feel a little more normal.  He hasn't had the expected "roid rage":yet another small victory.

New Concerns

Left leg/foot- Braeden reported to the team today in both of the clinics that he is experiencing left leg numbness and tingling that is new over the past week.  Dr. Landi was called in to see Braeden and do an exam.  After the exam, Dr. Landi said he was extremely concerned.  (During the testing, Braeden had very little reflexes. We all know the little hammer that they use to tap your knee to see how far your leg will jump.  His leg didn't jump at all.  Also, picture the butt end of a butter knife (I don't know the official name, lol)  being dug into the bottom of your foot.  The expectation is that your toes will curl forward.  His right foot was responsive,  his left foot was not.  The plan is for Braeden to have a consult with Dr. E. Smith who is a neurologist, and have him try to figure out what this all means.  Braeden is also scheduled to have a complete spinal MRI in May.  Up until this point, they have only being doing the "upper" spine. We could have the MRI done sooner, but it would possibly give the wrong "picture".  Radiation could cause the MRI to show more inflammation than is actually there. Typically, you should wait 6 weeks or so before having a MRI after radiation. For now, we wait and if he notices increased tingling or clumsiness, we are to make them aware immediately.  

CoronaVirus-Braeden had all kinds of questions for the team today. (We had listened to our local radio show talking about the CV on the way to Duke. Braeden said, if I get the CV, I am OUT, like I am DONE.  I will be a resident of Duke for weeks.)  The PA tried to ease his mind and told him that the population of patients that are getting the CV are 40 and older, very few children have been reported to have the CV.  

It is really quite scary how quickly this all changes.  I would have never thought we would be in this place 18 months ago.  After his initial spinal cord surgery, my hope was that it was a "one and done."  

Till next time.

#BraedenBrave

#MrUnlucky