Hey guys, its me, Cally.
I know that the last post from Karen will quickly spread through the many many people Brian has made laugh, inspire, and been a friend to. People will be asking how they can help.
Here is one big way to help:
https://www.youcaring.com/thenewtonfamily-735927
Karen, Brian, and Harper could definitely use the financial support at this time to make up for the lost wages and medical expenses.
Friday, January 13, 2017
The Plan
Hey all.
I know many of you have been waiting for an update. We wanted the entire picture and plan before we shared publicly.
The scans came back and the cancer has spread. We have come to Community Hospice Bailey Family Center for Caring to get Brian stable and comfortable and then see where we go from there.
We appreciate all of the love and support.
I know many of you have been waiting for an update. We wanted the entire picture and plan before we shared publicly.
The scans came back and the cancer has spread. We have come to Community Hospice Bailey Family Center for Caring to get Brian stable and comfortable and then see where we go from there.
We appreciate all of the love and support.
Wednesday, January 11, 2017
What's Up Now?
Hello!
It is so nice that I haven't needed to post since August 31st!
What's been happening since then because that is SUCH A LONG TIME!?!?!
On September 20th we got scan results from the neck down that showed the new immunotherapy was shrinking everything except for the adrenals. We were relieved.
Since August Brian has been feeling great. We have had a "normal" life if you are allowed to use the word normal in a sentence that includes Brian. It has been so much fun and so nice to just live and Brian only have to go every two weeks for a short hour long infusion.
However, in the past month Brian's appetite has been decreasing. On top of that a few digestive issues presented themselves and he was becoming weak. Tuesday night he became too weak/sick and we needed medical help at the hospital. We called our doctor and were admitted.
We are now at the hospital receiving wonderful care from the staff as well as great support from our village.
We are awaiting tests and will know more at a later time. We just wanted everyone to have the same information.
How can you help?
1. Say prayers if you are the praying type.
2. Keep being awesome.
3. If you work at FSDB and would like to donate hours to Brian that would be fantastic and you can contact Dani Mitchell.
4. You can always text me (Karen). I like talking if you didn't know that about me.
It is so nice that I haven't needed to post since August 31st!
What's been happening since then because that is SUCH A LONG TIME!?!?!
On September 20th we got scan results from the neck down that showed the new immunotherapy was shrinking everything except for the adrenals. We were relieved.
Since August Brian has been feeling great. We have had a "normal" life if you are allowed to use the word normal in a sentence that includes Brian. It has been so much fun and so nice to just live and Brian only have to go every two weeks for a short hour long infusion.
However, in the past month Brian's appetite has been decreasing. On top of that a few digestive issues presented themselves and he was becoming weak. Tuesday night he became too weak/sick and we needed medical help at the hospital. We called our doctor and were admitted.
We are now at the hospital receiving wonderful care from the staff as well as great support from our village.
We are awaiting tests and will know more at a later time. We just wanted everyone to have the same information.
How can you help?
1. Say prayers if you are the praying type.
2. Keep being awesome.
3. If you work at FSDB and would like to donate hours to Brian that would be fantastic and you can contact Dani Mitchell.
4. You can always text me (Karen). I like talking if you didn't know that about me.
Wednesday, August 31, 2016
Keeping You in the Loop
Hello!
Brian and I were talking the other day and realized we do a great job of informing people when things are crazy but forget to give an update when things are going well.
Here is the latest:
Brian finished his last round of the current immunotherapy he was on, Yervoy, on August 19th. The last two treatments left Brian with no side effects. Currently his labs look amazing, he is full of energy, and looks so great physically. (We won't mention my jealousy over his weight loss and healthy habits). We are all working and playing and enjoying normal life. Brian will have scans on his body on September 14th then we will get the results with Dr. B. on September 20th. If things are the same or smaller, we will scan again in a few months and do nothing else in the meantime. If things are new or bigger we will start on Obdivo, an immunotherapy Brian was on briefly before. As we have explained before, immunotherapy needs time to work. We are hoping for the best and appreciate prayers for the 20th!
We love you all and are continue to feel grateful for our village of love. We are so so so thankful for the normalcy we have right now too. We don't want to jinx it, but it feels really good. Looking back on journal entries from this time last year, I seriously am so happy that is behind us and the weekly emergencies are a thing of the past! Phew!
Love you all!
Brian and I were talking the other day and realized we do a great job of informing people when things are crazy but forget to give an update when things are going well.
Here is the latest:
Brian finished his last round of the current immunotherapy he was on, Yervoy, on August 19th. The last two treatments left Brian with no side effects. Currently his labs look amazing, he is full of energy, and looks so great physically. (We won't mention my jealousy over his weight loss and healthy habits). We are all working and playing and enjoying normal life. Brian will have scans on his body on September 14th then we will get the results with Dr. B. on September 20th. If things are the same or smaller, we will scan again in a few months and do nothing else in the meantime. If things are new or bigger we will start on Obdivo, an immunotherapy Brian was on briefly before. As we have explained before, immunotherapy needs time to work. We are hoping for the best and appreciate prayers for the 20th!
We love you all and are continue to feel grateful for our village of love. We are so so so thankful for the normalcy we have right now too. We don't want to jinx it, but it feels really good. Looking back on journal entries from this time last year, I seriously am so happy that is behind us and the weekly emergencies are a thing of the past! Phew!
Love you all!
Sunday, July 17, 2016
ONE MORE DAY! (but a lot in between)
Hello!
So we are super excited because tomorrow is the last day of Brian's 15 days of whole brain radiation. This process has required us to get up early every morning and drive an hour, then treatment takes no more than 20 minutes only 5 of which is actual radiation, then an hour drive home. Most days Brian would then hop in his car and go to work. Like everything, Brian has handled this pretty well. He has had some fatigue and a few other things but overall not as terrible as we expected. We have great rescpect for people who have treatment for 45 days straight!
Here are some things that have happened in between. Of course we never do one thing at a time. So Brian started Yervoy (the new immunotherapy) then not long after started the whole brain radiation. Immunotherapies are designed to teach your immune system to attack the cancer cells. So instead of tearing your body down, it vamps the body up. Two common side effects are colitis (stomach issues) and endocrine issues. Two weeks after his first infusion of Yervoy and one week into the brain radiation, Brian got super sick. We will call is stomach issues but that only touches the surface. After getting IV fluids and taking one day of steroids, luckily he got better.
Another thing that happened as Brian started radiation is that his eyelids became puffy, his eyes were dry, and he had cloudy and blurry vision. He was also seeing double when looking far right and far left. We just assumed it was from radiation. While at one of our check-ins with the radiation doctor during the treatment, she said the eye issues weren't something common with radiation. Now because of the stomach issues, the fatigue, and the eye issues, the radiation oncologist also wanted us to meet with the oncologist. Our favorite, Dr. B is out of town so we meet with his Physician's Assistant. . Anyways, she said many of Brian's symptoms could be a mix of Yervoy and radiation but wanted to get some bloodwork just in case. She also led us to an ophthalmologist. This eye appointment went well. The doctor said these are common issues for someone who has had radiation and chemo and immuno. Basically the meds attack things that grow quickly like your hair but also your tear ducts. Brian wasn't producing any moisture. He was prescribed some steroid eye drops and he is already feeling better.
Well on the way home from the eye doctor the PA called us with results of the bloodwork that we had forgotten we were even waiting for. Guess what?! Brian has the second side effect of Yervoy, his thyroid is greatly effected. The normal number for a thyroid is between .5-4.5. Brian's is 53!! The side effects of hypothyroid are dry eyes, weak eye muscles, and you guessed it, FATIGUE! So she wanted to prescribe Synthroid and a steroid. We are weary of steroids because they make Yervoy less effective which is not something we want. So after a quick talk with Dr. B (poor guy can't even get away from us while on vacation), we have decided to hold on the steroids and give the thyroid medicine a chance to kick in. Brian will need to have more bloodwork in a few weeks to make sure the meds are work and we will most likely see our endocrinologist.
Did I mention that somewhere in the middle of ALL of this Brian was in a car accident where he was rear ended forcing him to bump two other cars?!?!? Our paid off car was towed away and we are still waiting to hear if it is totaled. I was stuck on a sight seeing train with Harper with my car miles away when he called to tell me. Luckily no one was hurt, and friends came to the rescue to get Harper to school and me to my car so I could get to Brian.
Our ever eventful life continues to be full of twists and turns. Did I mention how excited we are that tomorrow is the LAST treatment day for whole brain!?!?! We will meet with the radiation doctor tomorrow to talk about when they will scan again to see how effective treatment was. Also as long as things go well with the thyroid medicine, Brian is expected to have his next immuno infusion on the 29th of this month.
God is clearly teaching me to live/survive through chaos and not have everything planned out. Pray that Brian has no more stomach issues before the next round of meds. We love you all! Thanks for being our village that keeps growing, loving, and caring for us!
So we are super excited because tomorrow is the last day of Brian's 15 days of whole brain radiation. This process has required us to get up early every morning and drive an hour, then treatment takes no more than 20 minutes only 5 of which is actual radiation, then an hour drive home. Most days Brian would then hop in his car and go to work. Like everything, Brian has handled this pretty well. He has had some fatigue and a few other things but overall not as terrible as we expected. We have great rescpect for people who have treatment for 45 days straight!
Here are some things that have happened in between. Of course we never do one thing at a time. So Brian started Yervoy (the new immunotherapy) then not long after started the whole brain radiation. Immunotherapies are designed to teach your immune system to attack the cancer cells. So instead of tearing your body down, it vamps the body up. Two common side effects are colitis (stomach issues) and endocrine issues. Two weeks after his first infusion of Yervoy and one week into the brain radiation, Brian got super sick. We will call is stomach issues but that only touches the surface. After getting IV fluids and taking one day of steroids, luckily he got better.
Another thing that happened as Brian started radiation is that his eyelids became puffy, his eyes were dry, and he had cloudy and blurry vision. He was also seeing double when looking far right and far left. We just assumed it was from radiation. While at one of our check-ins with the radiation doctor during the treatment, she said the eye issues weren't something common with radiation. Now because of the stomach issues, the fatigue, and the eye issues, the radiation oncologist also wanted us to meet with the oncologist. Our favorite, Dr. B is out of town so we meet with his Physician's Assistant. . Anyways, she said many of Brian's symptoms could be a mix of Yervoy and radiation but wanted to get some bloodwork just in case. She also led us to an ophthalmologist. This eye appointment went well. The doctor said these are common issues for someone who has had radiation and chemo and immuno. Basically the meds attack things that grow quickly like your hair but also your tear ducts. Brian wasn't producing any moisture. He was prescribed some steroid eye drops and he is already feeling better.
Well on the way home from the eye doctor the PA called us with results of the bloodwork that we had forgotten we were even waiting for. Guess what?! Brian has the second side effect of Yervoy, his thyroid is greatly effected. The normal number for a thyroid is between .5-4.5. Brian's is 53!! The side effects of hypothyroid are dry eyes, weak eye muscles, and you guessed it, FATIGUE! So she wanted to prescribe Synthroid and a steroid. We are weary of steroids because they make Yervoy less effective which is not something we want. So after a quick talk with Dr. B (poor guy can't even get away from us while on vacation), we have decided to hold on the steroids and give the thyroid medicine a chance to kick in. Brian will need to have more bloodwork in a few weeks to make sure the meds are work and we will most likely see our endocrinologist.
Did I mention that somewhere in the middle of ALL of this Brian was in a car accident where he was rear ended forcing him to bump two other cars?!?!? Our paid off car was towed away and we are still waiting to hear if it is totaled. I was stuck on a sight seeing train with Harper with my car miles away when he called to tell me. Luckily no one was hurt, and friends came to the rescue to get Harper to school and me to my car so I could get to Brian.
Our ever eventful life continues to be full of twists and turns. Did I mention how excited we are that tomorrow is the LAST treatment day for whole brain!?!?! We will meet with the radiation doctor tomorrow to talk about when they will scan again to see how effective treatment was. Also as long as things go well with the thyroid medicine, Brian is expected to have his next immuno infusion on the 29th of this month.
God is clearly teaching me to live/survive through chaos and not have everything planned out. Pray that Brian has no more stomach issues before the next round of meds. We love you all! Thanks for being our village that keeps growing, loving, and caring for us!
Monday, June 20, 2016
Then There Was More...
Hello Again!
So Brian had an MRI on Friday that was ordered very quickly.
This morning we got a call to come in TODAY. Of course we were freaking out thinking the worst! When we got there, after some jokes about gross Krystal burgers, the radiation doctor told us the MRI showed no new surprises. What a relief! There is still the same lace-like area that they saw in January that is cancer but it has NOT changed at all. This means meds, diet, or previous meds or even a combination has worked in keeping the brain areas under control. There is still a 4mm new mass that is TINY! Because the cancer is under control we found out now is the perfect time for whole brain radiation. The doctor was insanely positive and as she said she isn't just blow rainbows at us. One of the best predictors of how successful whole brain radiation is depends on how healthy or normal functioning the patient is. Brian is the best he's been in years so we are feeling good about the possibilities.
We will begin on Monday. There will be at least 10 sessions and there will be a few side effects: some short term memory such as numbers or grocery lists, skin irritation and fatigue. However, Brian's personality and smart comments will not go anywhere. All of these side effects are very manageable. We are happy that this seems like a good way to keep the brain cancer at bay.
Love to you all!
So Brian had an MRI on Friday that was ordered very quickly.
This morning we got a call to come in TODAY. Of course we were freaking out thinking the worst! When we got there, after some jokes about gross Krystal burgers, the radiation doctor told us the MRI showed no new surprises. What a relief! There is still the same lace-like area that they saw in January that is cancer but it has NOT changed at all. This means meds, diet, or previous meds or even a combination has worked in keeping the brain areas under control. There is still a 4mm new mass that is TINY! Because the cancer is under control we found out now is the perfect time for whole brain radiation. The doctor was insanely positive and as she said she isn't just blow rainbows at us. One of the best predictors of how successful whole brain radiation is depends on how healthy or normal functioning the patient is. Brian is the best he's been in years so we are feeling good about the possibilities.
We will begin on Monday. There will be at least 10 sessions and there will be a few side effects: some short term memory such as numbers or grocery lists, skin irritation and fatigue. However, Brian's personality and smart comments will not go anywhere. All of these side effects are very manageable. We are happy that this seems like a good way to keep the brain cancer at bay.
Love to you all!
Wednesday, June 15, 2016
After 3 months...
So why the update now?
Brian had scans a week and a half ago and we got the results today. We thought because Brian has had so much energy and has only been having a muscle tightness in his shoulder that we would get a great report. It was not as great as we were expecting.
There is no new cancer in Brian's body. However there is a 4mm mass in the brain that they will treat with targeted radiation. As far as the irregular stuff they found in the brain in January there has been no change. An MRI will tell us more but it could potentially be scar tissue. As far as the masses in his body there are no new ones but some of the ones there have grown. This means the meds he is currently taking are no longer working.
So what's next?
We will start an immunotherapy on Friday. It is once every three weeks for only 4 rounds. Immunotherapy takes time to work. So we won't scan again for at least 15 weeks from now. If things are stable at that scan then we will just scan again a few months later and continue this process. However, if the scan shows growth we will switch to an ongoing immunotheraphy treatment. The nice thing about immunotherapy are that is won't make Brian weak. He will be able to live like normal. No risk of low blood counts
Although this isn't the news we were hoping for we know there is hope in the immunotherapy so we will hang on to that! We continue to feel loved and supported and are so thankful for our community that has never once stopped pouring out support over the last 20 months that we have been going through this all. We love you!
Friday, March 11, 2016
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.
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.
Wednesday, February 10, 2016
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!
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!
Sunday, January 24, 2016
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!
Thursday, January 14, 2016
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
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
Tuesday, December 8, 2015
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!
Tuesday, November 17, 2015
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!
Sunday, November 15, 2015
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
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!
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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- We go to church!
- We watch football
- Life almost feels normal!
- WE ARE CONSTANTLY LOVED AND SUPPORTED BY OUR VILLAGE
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!
Friday, November 13, 2015
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:
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:
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
Sunday, November 8, 2015
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!!!
Friday, November 6, 2015
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.
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.
Thursday, October 22, 2015
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!
Thursday, October 1, 2015
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!
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!
Friday, September 18, 2015
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).
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