Crazy Week

Hey everyone. We haven't checked in while! This week has been nuts! Brian has been battling a cough then developed into a fever for a few weeks now. Last week he saw the doctor, went to the ER and had a chest X-ray and flu test but none could tell us what was causing his fevers.  Well Sunday night, Brian developed a 103 fever that lasted about 24 hours. Luckily his counts are fine so we didn't have to spend any time in the hospital. However, it was still pretty alarming.  The fever finally broke Tuesday. Tuesday afternoon I cut my finger pretty badly on a green bean can. If you know me, I am sure you can imagine the scene of me lying on the kitchen floor for a LOOOONG time crying, sweating, feeling like I was gonna pass out!  Meanwhile, Harper was blowing her new whistle and saying, "Look Mommy! Look!"  Ha!  Wednesday Harper woke up with a cold and today the dogs had skin issues! So everyone in the house has had something this week.  Don't feel bad for us. Just laugh! And pray that there is no more to come anytime soon!

Wait! What about Brian's fever? The doctor wanted to figure out what was causing the fever so they moved Brian's scans that were supposed to be in the end of March to today.  We knew before the scans that they would show one of 3 possibilities. 1. The cancer has spread and is causing the fever.  2. The chemo meds Brian is on could be causing it. 3. Another infection could be the source.   Once again our doctor is amazing.  The scan was done at 8:40 and by 11 we received a call with results.  Although we still don't know the cause, the happy news is that Brian's cancer is still shrinking. One lymph node under his arm was a centimeter bigger but if his body is fighting something this makes sense.

So what's that mean???  Well we still don't know the cause yet but we are SO happy the cancer is still shrinking.  This weekend Brian will stop one chemo pill to see if that is the cause. We will check back in with the doctor on Monday and go from there.

Some amazing things also happened this week too. Our friends, Steve and Sarah, had a gorgeous baby named Hazel, people's generosity continued to pour into our family, and mom got to be here to help out!!

So thankful everyday! Even on the crazy ones!  Love you all.

The Gift of Time

Hey everyone! You now know Brian is the writer in this family so I will just stick with the facts. As you know we had a scan yesterday and got a text telling us all the cancer (except the brain) had shrunk. Today we met with Dr. B. He's pleased with the results and said that the total cancer shrunk by half. He also said we never know what's going to happen so live everyday as we've been living full of love and fun. Because Brian is having no symptoms related with the brain the plan is to continue this medicine regimen and scan again at the end of March. At that point we will check in and see what the brain is up to. Brian will also have to see a dermatologist every 6-8 weeks because the chemo pills can cause other types of skin cancers like basal cell. We are so happy and feel like we've been given the gift of time.

This past month has been nothing short of incredible. I've never felt so loved. The massive and continuous support is overwhelming and humbling. I am forever grateful. After finishing up the last few things on our to do list, Brian and I will hopefully be returning to work the middle of next week.

Thank you for engulfing our family in love and support and celebrating with us! We love you!

What to say?

Hi everyone! 

Just wanted to put this here to help us all out! This is not an insult to anyone but just to explain our needs.

Many of you are probably thinking I don't know what to say. The best thing to say is nothing. No sad faces, no sad comments. Say hi, smile, give a hug.

We are living in optimism. So it's best to treat us like normal. Unless we talk about our health situation please don't bring it up.  You can always text Karen if you need to! 

We appreciate the outpouring of love and support. We love talking to you all. Please don't ignore us either, but it makes us feel best when we keep it positive!

Love ya!

Are you Sitting Down?

Hey everyone,

The last you heard from us Brian had brain surgery, they got it all and did radiation to be sure.  We had a great month and Christmas.

Unfortunately last Friday Brian noticed his toes wouldn't respond when he told them to move. We called our doctors who said to watch it. Well Sunday it happened again. We went to UF Health ER where our brain doctors are. After an interesting ER night, a few days of testing, and lots of painful waiting it was confirmed that the cancer has returned to Brian's brain very quickly.

After a full body scan we also learned it is widespread throughout the body.

Today we met with Dr. B. We cannot say enough how much we love this man.  He loves us and cares and makes the best plans.  Our plan is to stop immunotherapy because it takes a long time to work.  In the interest of time, we are starting a pill form of treatment that will attack the cancer in the body.  In 4 weeks we will scan again and make a plan from there.

Whole brain radiation is an option if this new pill works. For now we need to try to get the tumors in the body under control first before addressing the brain tumor.

Brian feels great, looks great, and doesn't feel sick. As a family we are going to spend the next 4 weeks focusing on treatment and having tons of fun with family and friends.

Our needs right now are for prayers that the new pill works. Also if you want to have some fun with us please let us know!

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

Brain Update

Hey everyone!

Here's what been going on. A lot of almost normal! Brian feels good, goes to physical therapy twice a week and is recovering well. The incision is healing and we've had another round of immunotherapy.

Today we had a meeting with the brain radiation doctor. Looking at the MRI he had yesterday there are no new lesions or tumors. The place where they took his tumor out looks great! Radiation will happen next week. It'll be a one time thing for about 30-40 minutes. He should feel normal after! 

Now we are waiting for the simulation where they practice lining him up! 

We are happy with all these forward steps and finally an appointment with no surprising news! 

Once again we want to express our gratitude for you all. We love you and are forever thankful for your continued support! 

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!