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!

Hey Now!

Hey everyone! It's been a long time since we have posted. Coming back from NYC we got right back to chemo and work. Brian has been feeling relatively well and started physical therapy in order to get full motion back in his arm. He's also done two rounds of chemo and turned 40!!!!  

That being said Brian finished his most recent round of chemo on the 10th then this Wednesday night after just returning to work and feeling totally normal all day, he ran a fever which sends us to the ER. It's always not during our doctor's business hours when these fevers strike! So Brian has been in the hospital since Wednesday night. 

He is doing well and being totally inappropriate with the nurses. We are just waiting for his neutrophil counts in his blood to go back to a safe place so he can come home and we can return to normal.

Love you all! 

P.S. Enjoy the answers Brian gave to the nurse when he was finally admitted at 3AM. (By the way nurses are our favorite people).

Heading Home!

We are so happy. This experience has been great but long.  Brian and I had some great together time with fun experiences before surgery. It is amazing that surgery went so well. Brian is healing nicely with no surprises.  His pain is minimal. We got to stay the amazing American Cancer Society's Hope Lodge for absolutely FREE. We had Brian's mom and Roger here for a week too.  We got to see family in NJ.   The requirements of me as Nurse Karen were easy and doable.

That being said we CANNOT wait to be home! 18 days away from our baby is 18 days too many.  We are thankful that my mom and dad were able to stay with her and keep her in her happy environment. Once again Wings of Hope has provided us with free flights!

Things I will miss about NYC:
-mass transit, I love the subway and not having to drive!!
-walking!
-awesome runs with a lot to see...even if it is the same route ever night
-being able to run late at night because everything is so lit and there are always so many people around
-all the food choices
-$10 manicures

Things that I will not miss about NYC:
-having only 1 pillow
-no ice in my water
-no free refills for Brian
-everything costing at least $30 no matter what it is

Overall WE ARE BLESSED. We continue to be reminded of this. From our friends and family to the nurses and doctors, we are loved and well cared for.

The Plan Now
Brian will begin chemo again on Tuesday (this makes us happy, we don't want to give it a chance to grow). He will do two rounds, about 2 months worth.  Then we will come back to NYC for a check up and scans. At this time they'll determine if it is time for surgery on the adrenal masses or if they are still responding so well that more chemo is a better option. Surgery will happen again and we are at peace knowing that this surgeon knows the best timing for it.
In about 4 weeks Brian will start physical and occupational therapy to get full range of motion back to his arm that they operated on (they took some muscle and a nerve).
In the meantime I will head back to work but most importantly we will be HOME!!

We cannot wait to see everyone. We love you all and are always amazed at the amount of support we receive.  We will get home after bedtime tonight so stay tuned for the video of us reuniting with our baby in the morning. Tonight we will snuggle puppies and be in our own bed with a million pillows and one less tumor!

Surgery is a Go!

Hey everyone. We got the news we have all been praying for.  Brian will have surgery on the mass under his arm on Monday, June 27th.  We are beyond excited to finally get this out.   They will remove the main mass and the tiny masses surrounding it and clean out the whole area. The procedure should take about 3 hours.  We hear over and over again that our surgeon is the best of the best and we believe it!

After surgery Brian will be in the hospital for a few days then when we are released we will be staying in American Cancer Society's Hope Lodge. It is a completely free service which we have been so blessed to get a reservation! We will be up here for at least 7-10 days post-op (until his drains can be removed).  Pray for us as I practice my nursing skills and Brian recovers.

After this will be more chemo and eventually a second surgery on his adrenals.


We love you all and continue to be overwhelmed with the love and support! Pray for little pain, quick healing, and patience. Also pray for this mommy and daddy who miss their sweet girl who is at home having a blast! Pray too for all the medical staff. Since having Harper and dealing with cancer, I have the utmost respect for nurses! If you are a nurse. THANK YOU!

Love you all!

More News

Hi!

We officially heard from Sloan today. The surgeon himself called us at 7:30pm! Here's the deal. Surgery is a maybe. They discussed Brian at their big meeting. They want a better MRI. Depending on what they see in that MRI they will determine if surgery is a good idea at this point. They want it to be as safe as possible without affecting mobility or function of his arm/hand.  So we will fly up Tuesday, do MRI and CT scans Wednessday, and meet with the surgeon and hear his determination on Thursday. If they say no it means a reevaluation and surgery at a later point. Last time we weren't prepared when they said no. This time we know that is isn't certain. Please pray for us as we wait some more. Also pray that the surgery is a go! 

Love to you all! 

Update time!

Hi everyone! It's been a while. We've had a nice six week break full of vacations, work, and facial hair!! It was super nice having Brian at full strength!  During that time Brian had and MRI and CT scan. They are currently in NYC being reread by their radiologists. Because we don't want to go too long without doing anything Brian will have chemo again starting the 7th. We are still waiting to hear what Sloan decides after reading the scans. 

Love to you all!!