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

My favorite job

Braeden's new schedule keeps us all pretty busy.

Monday=radiation,this is a quick appointment, the drive there and finding a park is the longest part of it all

Tuesday=radiation, and an hour with his Duke tutor

Wednesday=radiation, blood work, appointments with his radiation oncology doctor and his regular oncology doctor, and also throw in an infusion of his ChemoRX  (the Avastin drug infusion was called this in his chart today.) every other Wednesday. (I attached a picture of him getting his second infusion this past Wednesday)

Thursday= same as Tuesday

Friday=same as Monday

(We also had an IEP meeting for the home-hospital care this past Thursday, and he will begin having 2 home visits a week from a WCPSS teacher to keep him up to speed on his missed class time.)

Below days are subject to change from week to week 

Saturday= Yesterday, he spent a few hours out his good friends Roman and Zach doing normal teenage stuff.   I honestly believe this is the best kind of medicine for him.  Happy that he has such a good friend circle.

Sunday= (Today) He has asked to go to Chase's soccer game.  (He said he had a few of the moms he wanted to see and hang out with.  Lucky ladies for sure. )  It may seem simple, but this is BIG. Braeden is not usually a fan of sitting at the soccer field for 2.5 hours. It has always been  frustrating for him to hear all of the sideline yelling about what is going  on the field and not know what's happening. He also hates Vitamin D in general. I love that he wants to see those special Moms,  I don't know who will have more fun!

He had radiation #10 yesterday.  10 down, 20 to go.  He hasn't shown any obvious side effects from the radiation.  The doctors have told us that we can expect them around week 3.  (Burns, fatigue, etc.)  His "GRAY"  dose  (the amount of radiation given over the 6 weeks of treatment) is around 50. In reference, when I had radiation my "GRAY" dose was about 50 over 5 weeks of treatment.  I remember some fatigue, and one really angry burn.   As I typed this, I was curious to read what I had written about my own radiation treatment.   It's so hard to remember all the details, I blame old age, lol   I found my blog about my radiation experience.  Below is an excerpt.

"I just finished my 21st radiation.  Only 4 more to go!  Radiation has not been too bad, I can definitely tell I am more tired and I do have some burns, but overall I have gotten thru it pretty unscathed.  Let's hope that after it's done, my heart and my lungs can say the same thing.  The doctor's are pretty sure, I am going to suffer some sort of heart damage from this.  Again, damn!  But what can I do? 
Radiation was one of those things that was not too terrible.  I did learn not to drink copious amounts of caffeine before going, because you are suppose to lay still for 15 minutes during your treatment.  I have a hard enough time doing that without an extra 200 mg of caffeine on board. "

His most bothersome side effects at this time are from the steroids he is prescribed. I won't mention his left and right hand weakness.  That is just a given.  He is on a tapered dose schedule and every few days the amount he takes is reduced.  The constant hunger, no sleep, and acne are expected to resolve after he stops taking them. He is hungry all the time, trying to find the balance of healthy foods and satisfying his hunger is a job.   (I won't lie, we both have had a few good meals since he began the steroids.  Last week's top meal after radiation was a yummy spicy lamb meatball and kale pizza.)

As a mom of three teenage boys, I am living my best hectic taxi mom life.  The day to day schedule of  3 active teenagers is quite impressive.  3 kids, 3 places to be, and almost always having them to be at different place.  Add in Duke time, and it is like having a full time job on top of your other job(s). Thankful, that I am able to self-schedule and work when I don't have the kids.)   I count my blessings we (Bart and I) are able to get him to and from his appointments and that his step-parents (Chandler and Claudia) are able to jump in and help with Braxton and Chase.

Having this Duke job is difficult, the unknowns are enough to drive you crazy, the tears are never ending, my blood pressure is really misbehaving and seeing your child having to endure "something else" just sucks.

No matter how much my Mama heart hurts seeing him go through this battle.
I have to believe he is going to be OK.
I told Braeden the other day, without a doubt,  he will always be my FAVORITE full time job..



#BraedenBrave
#MrUnlucky