Good news Monday

Shortest post ever....

Blood pressure is better.  It is still high but manageable.   He needs a few more days for the medicine to work.  The decrease in steroids should help too.

Cytology came back and although there were "limited cells" with his sample but there isn't 

ANY EVIDENCE OF LEUKEMIA OR LYMPHOMA.  

Now we wait for the other testing to come back from Mayo Clinic and go from there.  Those tests will be ruling in or ruling out any autoimmune diseases.

Until next time.

#BraedenBrave

#MrUnlucky

Dreaming, Decadron, Diuretics, Diastolic, and hopefully (no) Duke visit

I really try hard not to over post, but sometimes I have  to keep up with all the ACTION that surrounds my oldest fellow. If I didn't keep this blog and my written journal, there is no way in HECK, I could keep up with it all. 

Yesterday, was another long day at Duke. Braeden had his 2nd IVIG and his 11th Avastin infusion yesterday. Thankfully, he slept through most of the treatments.  His blood pressure was misbehaving and hanging around 160s/110s.  Steroids are likely the biggest culprit causing it rise. Those little pills are the biggest troublemakers.  I am so glad he is being weaned off of them within the next few weeks. Avastin can cause issues with his kidneys which in turn causes BP issues, but Braeden's kidney lab work from Tuesday looked good.

They were able to finally bring it down with IV blood pressure medicine and, finally, diuretics.  Once the diuretics started working, there was no sleeping for him, lol.  We were told we could go home as long as we had a way of checking his blood pressure and to call in today with his numbers.  If his BP was still up today, we would begin blood pressure medicine.  Once again, thank you steroids for being such a PITA. 

This morning before school his blood pressure was 156/96 &140/90.  We made a plan for him to continue school at the kitchen counter and not to do anything else.   (Duke wants to see his bottom number (diastolic) below 90)

Around 11:45, I rechecked his pressure and rechecked and rechecked....His pressures were 187/125, 185/118, & 181/118.  

I called Duke and they immediately called in a blood pressure medicine for him.  He began the medicine today at 1:30.  Realistically, the medicine will take a day or two to start working.  

I gave them another call at 3:30 because he was having a nose bleed and his pressure was still high at 

187/112.   

He is pretty asymptomatic even with his blood pressure being so high.  If he ends up having a terrible headache, a more significant nose bleed, or if his pressure climbs anymore we will definitely head to Duke.   

For now, he is being waited on hand and foot, drinking lots of fluid, taking his Tylenol for his headache and says he is feeling  "pretty good".  

I just asked him what the worse thing about his day has been so far.  He responded pretty quickly and said having to get up for school.  I think the kid is going to be ok.

Prayers that his BP doesn't get any higher, and that we can all have a nice quiet weekend at HOME.

UPDATE just checked his BP at 5:45 after I posted this blog and his pressure is 160/90 so we are heading in the right direction. 

#BraedenBrave

#MrUnlucky

Shopping List

On Monday we saw Dr. Landi  and got the pre-op stuff  done for the lumbar puncture that was scheduled for today. His lumbar puncture was planned to be done under anesthesia in the OR. 

The team felt that in general his spine and case were too complex to do the tap with out putting him out.   (I totally agreed with this, the kid is fidgety, and the last thing he needs is to be fidgety with a needle in his back.)   Plus, I figured he would get a good nap, since the steroids keep him up most nights.  

Dr. Landi said he had quite the shopping list from CHOP of testing that they suggested  to be done with his CSF.   Shop away, shop away.  Answers are needed.

It was also decided that day, to start weaning his steroids, and a plan was made to be completely off of them by September 14th.  While they were a necessary evil and they did some good, they also did their share of bad.

The side effects, are just a big UGGGGHHHHH for him.  The constant hunger, the weight gain, the acne, no sleep and the list goes on.  He is ready to feel better, and it goes without saying that we all want that for him.  Because of the steroids he now has a condition called Cushings syndrome.  Most of the side effects that associated with the Cushings should resolve slowly after he is weaned off of them.  He unfortunately, has developed the deep purple stretch marks that are common with Cushings, and he will always have those as a reminder of his latest "gig" at Duke. 

Being 16, he may not get that scars tell a story, and being able to tell the story is way more important than how they look.  

Braeden also had Covid testing done on Monday.  I am happy to report that his test was negative.  He had to have a negative result for his "procedure".   He also reports that the actual "swabbing" wasn't that bad, and that NO, it didn't go up to his brain, lol.

Today was a fairly long day for Braeden.  We left home this morning at 8:30 and got home this evening around 8:15.  I think they need to put us on the payroll.  

In true #MrUnlucky fashion, the LP should have only taken 10 minutes or so, after he was prepped and "knocked out".  Of course, with his luck this didn't happen, he was under for almost two hours.   It took five different doctors to try to get his sample.  The doctors started with a 3.5 inch needle, and ended up having to use a 5 inch needle to obtain the sample. (Blame the steroids for making this so difficult) OUCH, is all I can say.  They were able to finally get about 16 ccs of CSF from him. Most patients only have 2 to 3 ccs  of CSF drawn from their spines.  His sample was larger than most, because of his "shopping list" and all the different testing that is ordered.  

We will not get the results of most of the autoimmune disease markers for weeks.  We will get the cytology results in about 72 hours, that will rule in or rule out Lymphoma or Leukemia.

After his LP adventure, we headed upstairs for his first IVIG infusion.   We go back tomorrow for another IVIG infusion and an Avastin infusion.  In the future, the IVIG can be given in one day.  Today and tomorrow are considered the "loading" doses and they want to ensure he tolerates it well.  The IVIG took about 3 and 1/2 hours to infuse.  Braeden was tired, and hurting during the infusion.  When we got home, he went to bed after he ate and has been sleeping ever since.   

I sure do hope that his full day of "work" will provide the answers that are needed to get Braeden back to being Braeden.

Thank you all for the love and prayers.

#BraedenBrave

#MrUnlucky

Is the mystery solved? NOPE! Is there a Venn diagram to lay out our plan? YEP!

Home from Philly...

The past 60 hours have been busy.  Those hours were filled with doctor appointments, more testing, a lot of yummy food, some heavy traffic, and a little sight seeing. 

I will try to condense everything and keep this post shorter rather than longer.  

A lot of those 60 hours, were spent questioning the doctors, and asking what more we could do?  Where else could we go, if you can't solve the mystery of Braeden?

I had written about Braeden "stumping" the Duke doctors a few blogs back.  WELLLLL, it seems he is stumping the doctors of CHOP as well.  Is this what we wanted to hear?  No, it's not.  Is there a plan? Yeah, kinda.  

I will start with the appointments we had yesterday.

Dr. Brandsema the Neurologist

His best guesses were as follows:

        

    The testing shows that Braeden's problem is mostly motor and not sensory.  (This is RARE.  Typically, it is a mix of motor and sensory)   Of course, this kid is going to keep these doctors guessing.  

    

    Braeden's issues are nerve root related. This could be caused by a autoimmune process.  Most of the the things that cause nerve root issues are not treatable.  

    His suggestion is to try a "Hail Mary" and begin IVIG infusions for six months.   He said it was a long shot, but if there is a response to the drug then great. (IVIG is a blood product used to "wash away the bad antibodies" in the blood that are attacking the "good". )

    He also questioned, why a sudden auto-immune disorder if he has already had a brain tumor and the spinal cancer? (Kind sir, that's why we are here.)

    

     He thinks that his symptoms are tied in to his tumor, or possibly something called Chronic inflammatory demyelinating polyneuropathy (CIPD).  He said it was a long shot, but CIPD can be motor related.   (His EMG does not support this diagnosis.)

So our plan after leaving his office yesterday was:

    Plan a lumbar puncture at Duke. (I texted Dr. Landi this morning and he is going to take care of this getting this ordered for next week)

        

        

The results will rule in or rule out the CIPD, and or a Lymphoma or Leukemia process.  Both Lymphoma and Leukemia can cause multiple nerve root issues, and his roots are are all being affected.

If his cerebrospinal fluid shows an abnormal cell pattern then it is likely CIPD.   If the cerobrospinal fluid show abnormal cells it may be a Lymphoma or Leukemia process.

Are you dizzy yet?  Because, I am.

Our next appointment was with Dr. Chen yesterday.  She is one of the Neurosurgeons at CHOP.  I will just let a picture of my notes below sum up our appointment. 

Today, we met with Dr Phillips who is the neuro-oncologist.  He literally spent hours with us today.  He has no clear answers.  He only has BEST GUESSES as to what is going on. His best guess is that it is a paraneoplastic neurologic syndrome. HIS BEST GUESS, does that suck? Yes it does, and I 

couldn't help to ask, what next?  

If you don't know, WHO WILL?  Dr. Phillips looked at me and said he would not leave us behind.  Once, we get the lumbar puncture next week at Duke, and if we find out we have one of the  paraneoplastic neurologic syndromes,  he will help us navigate and find the expert we need to deal with "his PNS".

If it is not a PNS issue, we will begin the IVIG infusions, and hope for the best, that his symptoms will get better, and we can stop the steroids.  I certainly hope it is this simple of a fix.  But as Dr. Philips stated today, "Braeden's case is CONFOUNDING and doesn't make sense."

Our appointment is summed up below, Braeden read it and said it's my VENN diagram, lol.

This road is not over for my boy.  

I appreciate all the love and prayers.  He deserves them.

#BraedenBrave

#MrUnlucky

    

Got Brace?

Got Brace?  

I know Braeden wishes he could get rid of one or two. 

He has been wearing his C-Collar and loathes it. That's probably the nicest thing I can say on his behalf about that subject.

Two weeks ago, the Occupational Therapist at Duke added 4 additional braces.  Two of which, he is using during the daytime for his left and right hand.  She wants the extra stability for his wrists.  His left wrist is extremely weak and "floppy" and if he were to dislocate that wrist it could cause another set of problems. 

Another set of problems is the last thing he needs. Can I get an AMEN!?!

The other two braces will be the  "two fancy custom-made for both of his hands that cost a small fortune" that he is to wear at night to try to keep his fingers from contracting any further. 

He has also been working his "OT program."  Think hand putty exercises, and wall push ups to try to increase upper body strength, etc.  

In the two weeks, since his initial OT with the Duke therapist, it seems he is doing something that is helping.   His hand strength was averaging around 10 pounds the week before he saw the new OT.  The 1st week of him doing "his program" his average was between 11 and 12 pounds.  This week his average is between 13 and 14.  It is definitely nice to see the numbers rising.

Yesterday, he had Avastin #10.  

Braeden-ism of the day yesterday.  

We take a picture of Braeden during every infusion.  Yesterday, he stated the obvious that he was running out of fingers to hold up.  I suggested we hold up toes for treatment #11.  That idea was nixed very quickly.  The kid wears shoes and socks ALL the time, and is not a fan of bare feet.  

I suggested a sign for his mask.  He thought about it, and then he said that he thought sharpie knuckle tattoos would be better.  OK, kid as long as you stick with the sharpies.  

#11 pictures to come...

We met a new intern, who had recently worked with Oncology Neurology team at Mayo.  He spoke highly of the ONC-Neuro  team at Mayo.

 

I told him that in two weeks if we hit a dead end with CHOP that he could expect a call from me, asking him to help with getting a referral at Mayo. (I think he took me so seriously, because I looked old enough to be his Mama, lol.)  

The disappointment of the UDN still hurts, but  I know it wasn't the path we needed to take. Braeden showed me videos on his phone yesterday from his bowling days.  I know the weight of all this is a lot for him to bear.  I know he misses his normal.  Answers to get him back to his normal is all we want for him.  As a family, we had a pretty good handle on the brain tumor side effects.  It is time to get this spinal cord tumor figured out.  

We are running out of options, and I will not stop trying to find the right place for Braeden if CHOP does not work out.  

We don't have a lot going on for the next week or so.  This Saturday he has another MRI.  Dr. Landi wants another spinal MRI on the books before CHOP.   

Keep the prayers coming.

Love to all.

#BraedenBrave

#MrUnlucky

One Door Closes

As the cliche goes, when one door closes another door opens.   I will let the letter below speak as to how one door has closed.

Disappointment, saddened, discouraged, crestfallen are just a few emotions my Mama heart is going through.   I am so ready for Braeden's miracle to happen.  August the 18th cannot get here soon enough.  Hopefully, behind the doors at CHOP will be Braeden's miracle we so desperately need.

Love to all.

Keep praying for my hero.

#BraedenBrave

#MrUnlucky