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