Saturday, December 21, 2024

High School and Beyond


Byron has had a remarkable year so far.  He has just completed the fall semester of his senior year with all As and one B.  His overall GPA is a 3.4.  It would be much higher but his first two years of High School were not as successful as the last two.  This was due, in part, to the return of seizures and a second brain surgery.  But now, with health challenges behind him, the sky is the limit!  In June of 2025 he will graduate from the Collaborative College High School (CCHS) in Hurlevyille, NY with a High School diploma and an Associates Degree from the State University of New York at Sullivan. 

He has already applied to colleges.  He wants to go to college in New York City and his first choice is Baruch University.  Second choice will be Hunter College.  He is hoping to major in Computer Science with a minor in Business.  

In 2014 we bought a Coop in Washington Heights.  He will live there when he goes to school.  Bob will live with him for a while as we are not confident that Byron is ready to live on his own just yet.  

Overall our family life this year was impacted by health challenges for both Bob and myself.  

First Denise - In February of this year, I woke up with overnight hearing loss in my right ear.  When I was speaking to a colleague on the phone that morning, her voice sounded like Micky Mouse.  I even accused her of using a fake voice!   Everything in that ear was distorted.  After many medical appointments and tests, we discovered that I had a benign tumor growing in my ear on the vestibular nerve.  This is called a Vestibular Schwannoma - also called Acoustic Neuroma (AN).  There are two options to treat tumors like these.   The first is full on brain surgery where the tumor is removed. The second is radiation most commonly known as Gamma Knife Radio Surgery.  This is a single procedure with a highly focused radiation beam.  Then, over time, the tumor slowly dies.  This "die off" can take up to 5 years to be complete.   This was the treatment I chose and had the Gamma Knife treatment in April of this year at NYU Langone Neurosurgery Center. 

Symptoms from an AN like mine, which was small but growing, can range from none at all to a person being unable to walk, a constant feeling of head spinning, dizziness nausea and severe headaches.  My symptoms were varied but in the mid-range.  Initially I had hearing loss and I developed severe tinnitus which has not abated to this day.  Six months after the Gama Knife treatment I developed a constant dizziness/wonkiness that made exercising, walking and doing much of anything on my feet challenging.  This is a common side effect of the radiation; as the tumor dies it irritates the surrounding nerves.  In July I developed Facial Palsy in the right side of my face where my face was frozen and unable to move on that side. By August I was not really able to drive as any quick movement of my head would cause me to get extremely dizzy.  Also in early August I fell outside while returning a local dog that had escaped from his lead.  The dog pulled hard and I landed on my right side with an excruciating thud.  On top of everything else, I now had a concussion which made the AN symptoms more pronounced.  

I am doing much better now.  I am driving, walking and I hope to start exercising again in the new year. The dizziness has mostly resolved.  I still have tinnitus and hearing loss and these will be permanent.  I likely will lose all hearing in my right ear.   

As for Bob, he has had chronic knee pain for some time.  In October Bob had his right knee replaced.   He is doing extraordinarily well.  After only two weeks he was up and walking and now he can walk, shovel snow and just about anything else he used to do. We are very please with his recovery.

And now we can circle back to all the good things in our lives.  We end the year full of gratitude for all of the blessings that enrich our lives.  In September we traveled to Rome to attend my dear brother's wedding.  I was well enough to officiate the ceremony alongside his new bride's wonderful sister.  It was a beautiful ceremony in the hills above Rome. We are so happy for Jeff and Alessia.  Bob and I celebrated our 20th anniversary in Rome the day after the wedding.






We enjoy seeing family and friends.  We delight in watching our magical granddaughter Charlotte grow up.


While 2024 had its share of challenges, we round out the year happier, healthier and looking forward to the next phase of our lives!








Sunday, July 16, 2023

XC Road Trip 7/16/23

 Over the past few days we have been driving over 500 miles per day visiting all the different national parks, like Zion, Arches and Monument National Park. We also saw Mount Rushmore which was honestly kind of jaw dropping. Tomorrow we go see Niagara Falls then after that we have a final 8 hour drive home. 




Wednesday, July 12, 2023

XC Road Trip 7/11/23

 We went to see Zion National Park and it was the best Park we’ve seen the whole trip. Everything was beautiful. We have a long drive to Denver today but we  should be there tomorrow.


Monday, July 10, 2023

XC road trip 7/10/23

 We arived at the Grand Canyon yesterday after a long two days of driving. Along the way we stopped at the Petrified  Forest  wich was cool. The Grand Canyon was beautiful.


Friday, July 7, 2023

XC Road Trip 7/7/23

 Yesterday we went to the St. Louis arch and went on a short boat ride. we are gonna be driving for the next 2 days till we hit the Petrified Forest.



Thursday, July 6, 2023

XC road trip 7-6-23

 Yesterday we Drove  for 14 hours and stopped at mammoth cave. Which was very cool and cold. We ended up spending the night in mount Vernon. Today we go to St  Lewis for the day 


Sunday, July 2, 2023

XC Road Trip 7/2/23

 Started off the road trip at my uncles house, we are gonna be here for 5 days and then me and my dad head out west starting on the 5th of July.

Sunday, June 25, 2023

Amazing Young Man

So incredibly proud of this young man. Passed all three of his college courses including the dreaded (for him) Comp 2 in which he got a 90!  He did a research paper on the misdiagnosis of strokes in children for his final project. 

Plus he did very well in all his high school courses as well.  I love this hybrid high school/college model. It’s so challenging but so worthwhile! @cchs



Saturday, April 15, 2023

Byron is Driving!

Byron got his learners permit. He is using an adaptive ball on the steering wheel. A small paint roller on the turn signal enables him he to whack it with his left hand.  Plus extra mirrors. He’s doing so well!





Thursday, February 16, 2023

Byron is on the Radio!

Byron has been doing volunteer work with an organization called PRASAD.  One of the main things they do in this county is provide free dental exams to local children on the children's dental health bus. They recently celebrated their 25th anniversary and Byron recorded a radio spot for them.  This spot will be played 15 times per day on three Bold Gold Media Group radio stations.  I have also uploaded the audio file for your listening pleasure!










Tuesday, October 18, 2022

No News=Good News


Nothing much happening here so we are greatly relieved. A perfectly normal fall. Byron is doing well in school.  We continue to wean the seizure medications with the goal to be off them entirely next month. Byron ran a couple of miles the other day and felt pretty good doing it  🏃

New 10th grade school pic!







Tuesday, September 6, 2022

First Day of 10th grade

Byron returns to school on this rain drenched morning.  What a summer it’s been! When I asked Byron if the surgery was the strongest memory of the summer, (hoping it wasn’t) he said, “Mom, the surgery was a blip”.  We’ll it certainly wasn’t a blip for me 🙄😵‍💫🙁.  He told me his favorite experience of the summer was the 4th of July at his Aunt Ellen and Uncle Steve’s lake house in North Carolina.  Yes there were some great memories too! 




Friday, August 26, 2022

NYC Trip for Byron

 It’s the end of a looooong summer for all of us. We are celebrating the end of Byron’s surgical journey. All of the things Byron loves are on the docket; soup dumplings, Broadway with Dear Evan Hanson, time with Uncle Jeff and Alessia, watching his brother Ryan complete a 10k in Central Park, The Stranger Things experience and more…




Friday, August 19, 2022

Fever Free for Two Days

 The great news is that Byron’s fevers seem to be gone!  Now the real healing can begin. He’s pretty tired but in most ways he’s back to himself. 



Monday, August 15, 2022

Very mild fevers today

 Maybe, just maybe we are rounding the bend with the fevers. Down to 100 with no Tylenol. Byron is much more like his old self. Energetic, loud 😂 funny. All in all a good day. 



Sunday, August 14, 2022

Fevers persist but he’s better

 It’s very strange how Byron is still experiencing fevers almost all day ranging from 100-101.9. We are really hoping they abate soon. But he’s generally feeling much better. 

Taken this evening 





Thursday, August 11, 2022

Onwards!

 Today Bob took Byron to NYC to get the 60+ staples removed and to meet with Byron's epilepsy specialist. The removal went well with no pain (PHEW) and we have a slow weaning plan to get Byron off of the seizure medicine.  I think the weaning schedule is too slow but I always do. He is on such a huge dose that I really want him to be finished.  And, if the surgery was a success and there are no more seizures, we will know it once the medicines are removed.  

The only minor hiccup is that he is still having fevers.  The surgeon did not seem too worried about it. He said that they should level off soon.  Hopefully the antibiotics will help. 

Byrons attitude remains excellent.  He has never complained except during the first few days. He takes this challenge in stride like most things.  Truly a remarkable human being.  Even being his mom, I'm not shy saying that :)

Sent the following letter off to the school today from the doctor.




Tuesday, August 9, 2022

Blood Work

Today Byron visited his pediatrician to see if we could uncover any reason for the fevers. Bloods were drawn and we just received the results. The blood tests look excellent. He has a slightly elevated white blood count (14.5 for those who know this stuff). This is actually really good. Ten days after his first surgery his WBC was 28.  He also looks like he might have a very slight bacterial infection. So as a precaution she is prescribing an antibiotic. We agree with that recommendation. Other than that, his energy and alertness seem to improve every day. Thursday to the city to see the surgeon to have all 68(!) staples removed. 


Sunday, August 7, 2022

Better Today

For the first time in many days Byron’s fever broke and returned to normal. His behavior changed quite significantly. He seemed more like his old perky, friendly self. He even wanted to play video games 😳😄(there needs to be a mixed emotions emoji).  This was on Tylenol but in previous days the Tylenol only brought it to 100-101. Now the goal will be to keep it this way! 

Friday, August 5, 2022

Same same

 Fevers of 101 ish up to 102 all day.   Tonight he said he felt “vulnerable.”  It’s a good thing to acknowledge feelings like that as a 15 year old yet I feel him. What an ordeal to go through, not once but twice. I wish things could be different for him, but as a doctor once told me “you must play the hand you are dealt.”  And he does. And we do.