Gratitude

There are not enough words to convey the gratitude we feel. Although accepting money is so hard for us and Cally had to set it up, we are overwhelmed and so incredibly appreciative of the support. It helps relieve the financial burden and takes a big stress off of our family during this time.  So we want to scream THANK YOU and hug each of your necks...even you anonymous people for donated!
We also want to thank those of you who pray, send care packages, tell funny jokes, give happy smiles, and overall make our lives blessed.

A Post Chemo Update
Brian handled chemo relatively well. There are amazing new meds that help fight all the nausea.  There were a few days of pain/weirdness and a lot of days of fatigue but overall not as terrible as we expected.  We are trying to walk and stay active as much as possible because Dr. B. told us that's the best way to have positive results with chemo. Our Christmas FitBits are helping us count our steps.  Our next cycle of chemo is January 6-9 with a few appointments in between.  Text me if you want to stop in while Brian is in chemo.

We love you all. THANK YOU!!!!!!!!!!!!!!!!!!!!

How can you help?

Many of you have come to me asking where and how to donate to Brain.  The fundraising page is up! Check it out:
https://www.youcaring.com/medical-fundraiser/brian-newton-fan-club-help-brian-beat-cancer-/281003

Help relieve some of the financial burden... because we are ALL in the Brian Newton Fan Club :)

-Cally

It has Begun!

Day 1
Day one of chemo was enlightening. We waited for a while for authorization from insurance to get started, but after that it is just a sit and drip game. We had some visitors, played some cards, did some work, and rested.  The nurses were so sweet and loved on Brian a lot!

As we were leaving Brian didn't feel too hot and was really run down the rest of the night.  We were surprised by how quickly the effects were felt.

Day 2

Brian woke up feeling great which was such a relief.  He had tons of special visitors and cool books as prizes.  He also got a great surprise from his Mum...noise canceling headphones. Now he can ignore us all!  He is making sure to eat well and drink tons too. No sick feeling after chemo today, just a little rundown feeling.  Such a relief for us all. One more day of chemo and then a quick visit on Friday for a shot and some fluids.

Thank you all for your prayers and constantly checking in!

A Slight Change in Plans

Good morning! Our awesome doctor who shouldn't be working on weekends but does, called us yesterday to inform us that the chemo regimen does not need to be inpatient. Therefore we will be doing it at Baptist South starting Tuesday for 3 days straight. Brian will still need to be there most of the day, 8-4ish.  The room is a shared room but we still want visitors. It'll just be important that we don't have more than two people there at a time.  So if you want to drop by just text me or Brian and we will let you know if it is a good time.  Also, if you are sick or have been exposed to others who are sick we ask that you wait to come. Although we like the idea of 24 hour care, we are excited to have the chemo done where we will get to build a relationship with the nurses and where our doctor will be right around the corner.

Have a happy Sunday!

We Got RESULTS (well....kinda...)

Hey everyone!

Today
We had a great appointment with our oncologist today here in Florida.  We will call him Dr. B. The pathology results are back from Sloan Kettering. They are similar to the ones we already knew.  The type of cancer is a sarcoma (there was a tiny chance it was something else).  There are so many different kinds. Although they haven't pinpointed the exact type, the have eliminated many. Our MSKCC oncologist, Dr. K., and our bestie here, Dr. B. both agree on the plan of action.  We will start chemo as soon as Orange Park Medical Center has a bed/room available for us. We are hoping for Monday but at least by Tuesday. There will be a CT scan Monday before that starts.

Chemo
The types of chemo are called AIM.  It is 3 different drugs.  The acronym explained...  A=Adriamycin, I=Ifosfamide, and M-Mesna (not a chemo drug but a drug to help offset the side effects of I).  Brian will be admitted to OP Medical Center and stay for three nights. Then come home. Three weeks later we will do it again. As long as this is working we will do several cycles of this.  In between chemo there will be bloodwork, shots, appointments, work, rest, play, etc.

Again....we cannot say enough about the medical staff we are working with. We love them. Everyone from office managers, schedulers, nurses, and doctors. We are blessed.

Our Needs
You have all truly given and done so much already. The love and support is insane and constantly blows us away. 

Needs of the moment:
-people who want to stop by and visit while Brian is in chemo. I am going to go with him the first day but will then need to return to work and will only be there at night the following days (which is hard for me for several reasons). His mom will be there a lot too. But as Dr. B. said, the chemo part is BORING!  The best way to coordinate this is to text Karen what day/time will work best for you once when know when we start.  I will make a little schedule and send it out.
-lots of prayers
-hugs with smiley faces not frowny ones
-no one to tell us anything that you googled about sarcomas or learned from the internet (we are trying to avoid google for sanity purposes)


Overall, this is still insane but we are getting through this with the support of you all. It is going to be a LOOOOOOOOONNNNNNNNGGGGGG marathon, so don't burn yourselves out ;)
We love you all!

-K

Another biopsy...

Hey everyone! From the last post you all know we were expecting to start chemo this week. However, that didn't happen.  On the Wednesday before Thanksgiving our doctor at Sloan Kettering called stating they needed more tissue to continue doing their pathology testing.  This isn't surprising because they were only sent one slide of tissue from the original biopsy that happened at the end of October (Mayo had used the others to run their own pathology tests).  Now that this is done and hopefully overnighted up there soon, we should know more about the exact type of cancer in the coming week or so.  We have a quick check in appointment with our oncologist here on Friday. It is amazing how much these people who work in these offices do for us. I love them and have not met most of them face to face.  Truly they make all of this so much easier. Thank you all so much for the continued support and love.  Here is a fun picture of the baby just to make you smile.  She brings us so much joy daily!

Brian Gets a Hair Net! What?!

Just a quick note...

Today Brian got a port surgically placed in his chest. This will be used for chemo to protect his veins.  We arrived at 9:30 at Baptist South, had a quick meet and greet with the surgeon then were swept off to the hospital for pre-op and surgery.  Brian was given some happy meds and doesn't remember the surgery but recovered quickly.  Of course he was making jokes before and after the happy meds. My favorite thing that happened today was when Brian looked down and saw the iodine on his chest and said, "Oh man! I got a sunburn!"  Thanks for all the love! Looking forward to a fun, restful rest of the break.

Happy Thanksgiving!

We're BAAAAACCCCK!

Hey everyone! We are back and it feels good to be home with the baby and pups.  On Friday, we met with the medical oncologist at Sloan Kettering.  She was wonderful. She said that the first step is getting the pathology reports that we've been waiting on forever to ensure we are treating the right thing. She said we should have them no later than Friday.  Then we would start chemo here in Jacksonville (hopefully the first week in December). The MSKCC doctor will work closely with our doctor here to set up the chemo cycles. From our understanding it will be 3 days of chemo then 3 weeks off (1 cycle). Then we would repeat scans and start another cycle.  The reason for doing chemo is two fold: first to shrink the masses and second to ensure no more spreading.  They'll want to meet back in NYC with us some time in Januaryish.  Overall, the doctor was very kind, reassuring, and knowledgable. We are very happy with the referral and decision to meet with the doctors at MSKCC.

Most importantly, we really appreciate all the love and support that continues to flow in. This is far from easy and knowing that our village is large is such a blessing and comfort to us during this difficult time. We love you all!

~Karen

NYC Day 1

Mini update! Today was Brian's first day of appointments in NYC at MSKCC. They met with the surgeon. Karen and Brian are so blown away by how knowledgeable they are up at Sloan. The surgeon wants to do chemo before the surgery to shrink the tumor. That means surgery will not be for at least 12 weeks. They will have a follow up appointment with the surgeon in 7 weeks from now (after a few rounds of chemo) at MSKCC. 

They will meet with the oncologist tomorrow to find out more about chemo. They do not know where (even what state) the chemo will be in yet. They still don't know what kind of sarcoma it is, but MSKCC will be doing their own testing and expect to know in a week. 

Brian gets to top off his day with another CT scan today, then is finished with appointments until tomorrow. Yay! 

I hope its not too cold up there. We miss you Karen and Brian! Stay warm! 

Read This First

Hey Y'all!
This is Cally blogging on behalf of Karen and Brian.  They will be using this site to keep everyone updated about their current journey.  Every now and then,  I will post for them, too.

Let Me Catch You Up to Speed
As you may have heard, Brian found a tumor under his arm and was concerned about how quickly it had grown.  The tumor was biopsied and found to be a sarcoma, which is a form of cancer.  As of right now, they have not found out what kind of sarcoma it is.  To find out more about sarcomas, watch this video by click this link: What's New in Sarcoma Treatment

After additional scans, they found bilateral masses on his adrenal glands, as well.

So What is Next?
Brian has appointments on Thursday and Friday at Memorial Sloan Kettering Cancer Center (MSKCC) in New York City.  They are hoping to be given some direction and find out more about the cancer and treatment plans (and eventually find out what kind of sarcoma it is). MSKCC is one of the top cancer centers in the nation. The family is confident that he is in the best hands. 

What Can You Do?
Be normal.  With all the craziness of appointments, uncertainty, and planning, Brian is pretty sick of talking about it all.  If you have questions or want to help, the best thing to do is talk to Karen or myself.  Continue to talk to Brian like you normally do.  Make fun of him.  Complain about traffic. Ask about the Redskins. Call him bald.

Karen, on the other hand, is okay with talking about the situation, and loves getting texts from everyone :) Feel free to contact her with words of encouragement, questions, and thoughts.

Many people have asked how they can help.  As of right now, the best way is prayer and encouragement and being normal.  Once they find out more, there will be updates about specific needs.  This whole situation is creating quite an emotional, logistics, and financial burden on their family.  I know we are all wanting to help, and Karen and Brian really appreciate the kindness of the community around them.  That being said, we are in a holding pattern for now, so stay tuned.

Karen and Brian are so thankful for the community around them.  They are blown away by the kindness and support they have already received.