Dad and daughter trip

Emmi has been having a hard time adjusting to us leaving for Florida every two weeks.  She gets herself worked up a couple of days before we go, and it's hard for us too!! She went to Florida with us by car the week that Bennie was enrolled into the clinical trial, because we had no clue how long we would be down there.  We only leave for 24 hours now, because we go by plane .... But Emmi was with us on the 22 hour car trip.  In her mind Florida is far, far away that takes two days to get to!  We thought it would be a good idea to let Bennie take her on one trip to Tampa, since now his infusion is only 1.5 hours long, and he hasn't ever had an adverse reaction to it (hopefully never will!).  We thought this trip would help her to process how quick the flight is, and how quick the Dr.s visit goes by.  She has seen Bennie at his worst in ICU before brain surgery, so we knew this would be a piece of cake for her.  She was also super excited to be his caregiver, and take over "Mommy's role". 

They left a little earlier the day before, because Bennie wanted to take her to do a little something fun other than a hospital visit!  We watched The Dolphin Tale (a pretty good movie if you need one to watch) a couple of months ago, only to realize that it took place in Clearwater beach which is right outside Tampa.  So, Emmi and Bennie went to the clearwater beach aquarium to see Winter and Hope (the dolphins from the movie).  They had an awesome time, and Emmi even got to demonstrate how Winter's prosthetic tail works (his tail had to be amputated due to infection).  

Here they are at the aquarium:

The next morning they went for Bennie's infusion.  Emmi was a champ at the Dr. and got to meet all the staff that takes care of him.  It was awesome to hear her talk about Mrs. Melissa (the nurse practitioner) and all the areas of the hospital.  Now when we mention something she can picture it in her head, and hopefully deal with everything better since she knows the routine firsthand!! I was glad to have both of them back home safely!  

Here they are during his infusion:

Bennie is feeling well, and getting more energy back since he is down to just the nivolumab (pd1) now.  His liver is still a little elevated, so he will get that checked here at home with blood work just to make sure it's staying at a safe level.  Hopefully he won't have to miss a dose because of that!  But so far so good!!

And it's Good!!!!

My oh my what a long week.  The anxiety from the impending scans hit the Lunsford household a week ago.  We were on pins and needles waiting to get to Florida to see how the cancer has been behaving since February, and since getting into the clinical trial.  Bennie hasn't had any scans in over 12 weeks (which is a century for a cancer patient) and we were ready to take a peak inside to see what was going on!! 

We left for Florida on Wednesday evening this time, because we had to be at Moffitt bright and early on Thursday morning for CT scans of body and MRI of the brain.  All the scans were done around noon, and so it was time for us to wait a couple of hours before meeting with the Dr. to get the news.  Bennie has to fast for the CT scans so he hadn't eaten since we woke up, so we ran to a pizza eatery for lunch.  Bennie was pretty hungry, but I couldn't even get down a couple of bites because I was so nervous I wanted to puke everywhere.  It's pretty much like someone announcing the lottery and you have all the numbers, but then they say "And the winning number is..............(drumroll goes on for two hours)", and you are waiting for two hours for the winning number.  You can cut the tension with a really dull knife. 

They put us in a room, and literally all you hear is tick tock, tick tock, tick tock from the darn clock for 30 minutes until someone finally walks in!!!  Thank goodness already give us the news!!!! But its not the Dr. its some guy who wants to enroll Bennie in a trial to basically use leftover blood and whatnot that they have already taken for other research purposes.  Fine, whatever, give us the consent forms and go get our Dr.!!!!! Another day or two passes (15 minutes maybe), and finally the Nurse practitioner walks in.  She says everything LOOKS GOOD!!!!!!!! Nothing new was found on the brain MRI, and CT Scans are good enough to keep on keeping on in the trial!!!!

As I am trying to catch my breath from not breathing for an hour or so..... complete exhaustion takes over.  After you get good news like that you literally feel every tense feeling finally relax and you can breathe from relief.   Months go by and you are anxious about treatment, and finally you get news that can get you by the next few weeks.  It suddenly feels like we can plan more than one day at a time.  We can maybe make plans for 3 to 4 weeks out!! Obviously side effects can pop up at anytime, but the good part is we know at least for the next couple of weeks he won't be in the hospital for a brain tumor or something like that.  You automatically just want to sleep and eat, because it's something that hasn't been done for a couple of weeks leading up to this stressful day!!!!

We head towards the infusion center after getting the AMAZING NEWS!!!! The infusions only last an hour and a half now that he is only getting Nivolumab (Anti pd1). He is now getting an increased dose of the nivolumab at 3 mg instead of 1 mg.   After the infusion we celebrate with the small amount of energy we have by stopping to get dinner on the way back to our hotel room.  We actually stayed in a different hotel this time, because we were trying to rack up points with Southwest Airlines.  This hotel had a deal where you get 5000 points if you stay there so we jumped on it!  It is right on Tampa Bay and looks over the water.  We got back to our hotel, and to our amazement dolphins were jumping all over the bay.  There must have been 10 dolphins right outside our balcony.  It was pretty neat. 

We walked down to the pier to get a closer look, and I had a very surreal moment.  I was watching these dolphins jump and play in the prettiest sunset, this live band at a restaurant behind us was playing the song "Every little thing is gonna be alright", and it was storming behind the hotel.  It just made me sit and think that there are going to be beautiful times in our life, even when a storm is brewing all around us.  Even with this cancer journey encircling us at all times, we still have beautiful moments all throughout it.  Everything is gonna be alright even if the storm comes upon us, and the sun goes down.  All in all it was an awesome day, but then Bennie started to feel a little feverish like he does most nights after infusions.  After some Motrin, and a good nights sleep he felt better in the morning!!!  Thank you for all your prayers..... we couldn't go this alone..... and we thank God everyday that we don't have to.  We also are so thankful for all the beautiful moments that we get during this crappy cancer storm.  Because some people in this same storm don't get as many beautiful moments as we have been blessed with. 

On Wednesday we learned that our good friend we have known since highschool at church, who also started this cancer journey the same time that Bennie did, is having his hardest time with melanoma.  Bennie and Matt where hospital room neighbors at MD Anderson when they were both admitted for their two week stent for treatments last January.  Bennie was able to talk with him and give him some encouragement, as he is in the hospital fighting for his life.   He may come home soon and will go on hospice to help with the pain he has been having, and to support him since he cannot have any more treatments in the current state he is in.  It's really hard for us, because he has been through this battle since the beginning with us, and we simply cannot imagine him not being here for the rest of it.  It's not fair that we get good news and he gets bad news.  However, we do trust that God is working through his life just as he is working through ours.  We know Matt has a strong faith, and we are praying for him and his next steps in this journey.  Please pray for peace and comfort for him and his entire family, and it's never too late to pray for a miracle.