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