Our Doctors Don't Mess Around

I can't say how much we love our team of doctors especially Dr. B. Last week I gave him updates throughout everything and told him my concerns for wanting the cancer on the femur taken care of ASAP. Knowing the tumor on the brain was aggressive we didn't want to just wait around. Hearing my concerns, the team immediately made a plan and had to be creative in order to make it happen.

Brian is having a remarkable recovery. Yesterday we had radiation simulation on his leg. We followed that up with a physical therapy eval. After going through all the tests Brian only has a few deficits that can easily be worked back to 100%. We are so blessed and amazed.

Today we had teaching for Brian's new immunotherapy that will begin tomorrow. This will train his immune system to attack the mutated cells and put us on the offense. It's a newer drug that is getting great result! Although they go over the side effects none will prohibit Brian from leading a "normal" life" --that word an Brian shouldn't be in the same sentence.

So what's next?

Tomorrow we get to see Dr. B then Brian will start immunotherapy. It is an infusion that takes an hour and will be given once every two weeks.

Thursday Brian has radiation and PT again.

Next week Monday-Wednesday Brian will finish the radiation in his leg. We will also have our follow up with the brain surgeon! 

Again we are beyond thankful. We have happy hearts and full bellies thanks to the meal train.

Thanks again to everyone! We cannot express it enough!

A Week in Review

I realize this week a lot of my updates were on Facebook and thought it would be therapeutic to review the week.

Friday

• They say Brian's tumor is big
• We meet with a neurosurgeon
• We find out Brian will have surgery in 1-2 weeks
• We learn he may be paralyzed on his left side and wheelchair bound
• The doctor notices Brian's slight limp and tells us it is a result of the tumor and there is a chance of seizure
• We drive to Tampa and Brian goes to a hotel for work

Saturday

• Harper and I have a great day at the zoo with my parents
• Brian comes back and has regressed. 
• Brian is walking more weirdly and he notices slower processing on his left side
• I freak out, worry all night long, and constantly am scared

Sunday

• We drive home
• I text Dr. B. He tells me to call the neurosurgeon
• The neurosurgeon on call tells us to come to the ER and they wills end us home with meds or admit us after scans
• OUR neurosurgeon calls us on our way to the ER and is excited because he was struggling to figure out how to get us into the ER and now surgery will be tomorrow
• We get admitted
• A bunch of friends join us
• Brian has an hour and a half MRI
• We are sent to the neuro ICU to save our room for after surgery
• We meet amazing nurses
• WE ARE CONSTANTLY LOVED AND SUPPORTED BY OUR VILLAGE

Monday

• Brian is taken down for surgery
• Right before he leaves they explain the scary risks again
• We wait all DAY! 7-3:30
• The doctor comes out and explains that he did the best he could
• He explains Brian's brain was already swollen and the tumor had grown since Wednesday 
• He had to go through the motor processing part of his brain (different than expected)
• He wasn't sure if Brian had stroked or not
• He knew he got 80-90% of the tumor but wasn't sure about the rest
• He didn't know the extent of the damage to the left side of Brian's body
• Our group of friends and I waited and waited and waited
• Around 6:00 they came and said Brian woke up and his smile was symmetrical meaning no stroke but he hadn't moved his left side. We were all so relieved. At this point I didn't care if he ever moved his left side again
• At 6:30 they came and said he had moved his left arm and gripped their hands!!!
• At 6:45ish I waited in a hall to see him where his first words were divorce!
• We got to his room and his left side was slow to respond to a command but got better throughout the night
• Throughout the night they woke Brian every hour for neuro checks
• We made it through the first night with no complications
• WE WERE CONSTANTLY LOVED AND SUPPORTED BY OUR VILLAGE 

Tuesday

• The surgeons came in and were shocked by Brian's improvement
• He moved his legs and feet
• His strength was a 3 out of 5 on his left side
• He couldn't bend his knee
• By 9:30 they had him sitting up in a chair
• At 10:30 I am in a waiting room with my parents and Zak and see Brian walking down the hall with a PT team!!!!
• Throughout the day his body responds more and more
• A bunch of people at work donate hours to Brian and overwhelm us
• WE WERE CONSTANTLY LOVED AND SUPPORTED BY OUR VILLAGE

Wednesday

• The surgeon came in and say they got the WHOLE tumor.
• There is clear excitement but the tumor was aggressive
• We still have to be worried about seizure, bleeding, and such
• Brian gets up and walks again. He even climbs up and down stairs!!!!
• Brian is amusing everyone in the ICU
• WE WERE CONSTANTLY LOVED AND SUPPORTED BY OUR VILLAGE 

Thursday

• The surgeon explains how much he was worried about the surgery and how it is the best possible result possible
• We get moved to a private room (thanks to our excellent nurse)
• We walk more 
• Brian has barely any pain
• Brian requests food other than hospital food. A clear sign he was feeling better
• WE WERE CONSTANTLY LOVED AND SUPPORTED BY OUR VILLAGE 

Friday

• Brian's strength is 5 out of 5 on his left side
• He walks unassisted.
• We come home!!!
• I have a slight breakdown (I think a release of all the stress finally hitting me)
• Our baby is so happy to see us
• WE WERE CONSTANTLY LOVED AND SUPPORTED BY OUR VILLAGE 

Saturday

• We are home!!
• I ran a 10K in just over and hour
• Brian is moving better and better
• We went out to eat as a family
• Brian has no pain
• WE ARE CONSTANTLY LOVED AND SUPPORTED BY OUR VILLAGE 

Sunday

• We go to church!
• We watch football
• Life almost feels normal!
• WE ARE CONSTANTLY LOVED AND SUPPORTED BY OUR VILLAGE 

Overall I cannot explain how much my heart is full of gratitude, thanks, hope, a tiny bit of fear, stress but most of all LOVE. I love you all. I love God. I love my family. I love my husband. I love my life.
We know we are blessed. So many prayers have been answered. We will keep hoping and praying and knowing we are loved.

What's next?
Tomorrow we have a simulation for leg radiation. We call to schedule PT. We find out when we start immunotherapy. We find out when our surgical follow up is to get the staples out. We get to make our next plan (knowing that it will probably change before I can even blog about it). We start to be on the offensive again against cancer.


Love you all!

How to Help

Hey there! Guest blogger Cally here.  Many people have been asking how they can help Karen and Brian right now.  They have told me they are so overwhelmed with the kindness and support of this community around them.  Here are a few things that would help:

1. Meals:  If you can help them out with a meal, that would be great.  The best kind are things that can be saved or partially saved if needed.  Sign up to bring a meal here:

https://mealtrain.com/156236

2. Finances:  So many people at FSDB have kindly donated sick leave to Brian.  Sadly, it is against the weird state rules to donate to a caregiver (Karen).  If you want to help out with some of the missed wages and other medical and care costs, donate here: 

https://www.youcaring.com/medical-fundraiser/brian-newton-fan-club-help-brian-beat-cancer-/281003

3. Pray:  Everyone is praying, and its is working.  Keep it up! 

Thanks for taking care of the Newtons, they are kind of awesome, right? 

Peace! 

Cally 

Always Changing

Brian has had a little weakness in his left side. Brian's motor symptoms seemed to be getting worse this weekend which was concerning! Nothing too scary just left side not responding as quickly and a little more weak. We knew this was a side effect because of the placement of the mass in brain but Because of this we called the doctor who told us to head to the ER. The nice thing is that we get to bump up surgery. It'll be first thing tomorrow morning. It could be tonight if there's any bleeding at all on the brain which is doubtful. 

We are happy there's no waiting! Please pray for our doctors and our team and all the people involved in our care. 

Love you all!!! 

Today was Tough

Hi everyone!

Let's recap. After our last trip to NYC, we met with our Dr. B to make a plan for our new diagnosis of melanoma.  We decided to start immunotherapy but needed a PET scan of the body and a CT of the brain to check to see if there was any spreading. We found cancer in his femur and a spot on his brain.  We met with a radiologist with Cancer Specialists of North Florida. She told us what she felt the best plan of action would be but wanted to refer us to the best place for the type of radiation Brian needed on his brain which was UF.

Two days ago we had an MRI of the brain to get a true picture of what was going on.  Before we had only had a CT and they aren't the best for imaging the brain.  Today we met with a radiologist at the UF facility in Jacksonville. We were prepared for the possibility of other small lesions on the brain but were not expecting a referral to a neurosurgeon.

The mass on the brain is larger than expected (a little less than 4 cm).  It is near/on/involving the motor cortex.  Because of the size, radiation would not give us optimal results. It wouldn't totally kill it and would allow it to grow again.  Surgery is the best way to make sure we kill this spot. The surgery will be within the next two weeks. Radiation will still happen about 4-6 weeks after surgery to make sure it is all dead or to kill any tumor that is left after surgery.  Because of the location of the mass, it may not be totally removed after surgery. We will do whatever is the safest. With all brain surgeries there are risks. Risks are scary. Recovery will be a 6 week process and Brian won't be allowed to drive. 

Overall, this is not fun. It is tough. It is scary. But we are happy for life and hope. We are happy for experts that we can trust and who want to help our family.

What can you do?
1. Pray. Pray. and Pray.
2. Give us a ride when you can.
3. Donate hours if you work at FSDB and have extra (No pressure. It's anonymous so we will never know if you did or didn't. If you did earlier in the year they gave them back to you and you'll need to do it again.)
4. Pray!


We will let you know when we know the exact date! Much love to you all.

New Plan!

Hey everybody! Today we met with another member of our care team to discuss what's next with the new findings. They found a tiny mass on Brian's right frontal lobe of his brain and some in the bone of his femur close to his hip. Both are tiny and caught very early. They've decided radiation is the best way to take care of both areas! 

Let's talk about the brain first. Brian will have a type of radiation called SRS. It has rifle like precision. It's a one time treatment done through UF here in downtown Jacksonville. It should have minimal side effects. We have to get a fancy MRI before they start but hopefully have that done within the next two weeks.

Now for the leg...Brian will have regular radiation at our Cancer Specialists of North Florida office in Fleming Island for 5 days. He will only need to be in the machine for 5-10 minutes each day! 

All radiation should be done before Thanksgiving. Brian will still have immunotherapy too! 

There's talk of other options with the adrenal glands too!

Overall, we are happy for a plan that involves minimal side effects allowing for tons of family fun and minimal work missed. As the doctor today said we are in no worse of a place now than we were a year ago when we first came in.

We again are insanely thankful for our village of support and for our team of doctors. 

Love to you all!  Hopefully we will see you at the golf tournament Saturday!

The Cancer Coaster Continues...

Hey everyone!

We arrived in NYC last night. We got our hotel from Hotwire to save some money. That means no elevator, a room on the 4th floor, and a bed that feels like you're sleeping on the boxsprings. Brian is super happy with my choice. Oops! Anyways, we had scans last night and ate a yummy dinner. The nice, older couple next to us were super friendly and kind.  While we are eating, we look over and the man is choking. We were ready to help and they asked for it. Brian patted the man's back while I instructed the man to cough and make sounds, and we made sure he was fine. Our server was so happy with our help that we got FREE dessert! Very eventful.

New NEWS

This morning we had an appointment with our surgeon. He informed us that they had the pathology results after testing the mass they took out in July.  It turns out Brian does not have a sarcoma. He has melanoma.  He was NOT misdiagnosed.  Looking back at my notes from our first meeting in November, the oncologist in NYC actually said, "I want proof that it's a sarcoma and not melanoma". When you only sample a small part of the mass, you only get a small sample of the bigger picture. After seeing the whole picture, everyone is "still scratching their heads." Brian's mass has some qualities that match a sarcoma and some that match melanoma. There is one special mutation called BRAF.  This mutation causes the pathologist to know that is is 100% a melanoma. Having BRAF is a good thing (I will explain later). We were confused by this information but were reassured to still be hopeful. 

Next on the agenda we had an appointment with the MSKCC oncologist. In the meantime, I called our best friend, our oncologist in Jacksonville, Dr. B.  He reassured me and told me that he will still be able to work with us. I don't know honestly what we would do without him. He calmed some of my fears which was necessary while we waited for our next appointment.

We then met with the oncologist here in NYC. She gave us some great information.  Melanoma is not always caused by the sun and can be caused be your own genetics (your own cellular make up). Melanoma and sarcoma are treated very differently. The chemotherapy drugs Brian received are never used to treat melanoma. However, Brian has had a fantastic response. After testing the mass, they found that Brian had 90% response, meaning 90% of the mass was killed by treatment. This is amazing. Also, Brian's adrenal masses are still shrinking as well.  This is awesome news.  So although we were treating what we thought was sarcoma, thank goodness we did because the results were great. Can't help but know that's a God thing.

Even though chemotherapy was working so well, there are newer and better drugs that have recently been developed to treat melanoma.  Brian will begin immune therapy IN JACKSONVILLE. Research shows people with the BRAF mutation have excellent response to immune therapy to the point that the masses can totally go away. It sounds like there will be limited side effects and Brian will not have to miss more than a few hours of work every three weeks. The financial strain of missed wages and trips to NYC will be a thing of the past (we hope!).  Again this is another blessing.  We thought we might still want adrenal surgery, but without masses to treat, the meds would not be approved by insurance. So we will do what our doctors think is best for optimal results. They've been right so far!

So what now?

We fly home tomorrow morning. We will meet with Dr. B. We will do what is best and return to life as normal.  We will keep MSKCC updated on Brian's progress and check back in with NYC in 6 months.  Brian has given permission for them to test and study his mass. Hopefully his case will help so many others on the cancer coaster too.

We love you all and are daily grateful for our village that has supported us for almost a year. We truly cannot express our gratitude in an adequate way. Just know you are appreciated!