Wednesday, August 31, 2016

Keeping You in the Loop


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)


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!

Wednesday, June 15, 2016

After 3 months...

Hey everyone! Of course you have noticed there has not been an update in quite some time. That is because things have been wonderful!!! We have been living pretty normal life, having fun, and taking it easy.  Brian started a new diet 3 months ago to help with shrinking the cancer and has been kicking butt.

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.

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!

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!