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We headed out to Tampa on Wednesday evening for Bennie's 12 week CT Scans and Brain MRI. 

                                         Here is us on the plane coming to Tampa

Thursday we spent most of the day at the hospital waiting for all the scans to get done.  We then spent the evening being completely nervous, trying to hold a conversation about anything other than cancer.   We woke up pretty early this morning to come back to Moffitt for the Dr. appointment to go over results, and to get treatment.  The Dr. came in and said that the brain MRI looked stable, but there are three new lung nodules that weren't there before 12 weeks ago.  These nodules could be melanoma tumors, or could be inflammation from the immune stimulating drugs he is getting.  One of the side effects Bennie has been dealing with is a lot of sinus issues/ clogged nose and inflammation in his head.  So, hopefully it has extended down into his lungs as well and that is all that the nodules are.  Unfortunately we don't know this for sure.  So, it is something to worry about until it isn't.  He will go ahead with treatment today, and another treatment on September 5th.  However, his next visit or the one following will have to include a CT scan of the chest again to see what has developed in 4-6 weeks.  If the nodules are bigger... then it is most like melanoma and he will get kicked off the trial.  If they are smaller or the same size it most likely is inflammation, and he should be able to continue getting the nivolumab.  The nodules are too small at this time to biopsy or do a pet scan to come to any further conclusions.... so we just watch and wait!!!!!! 

He just finished his 12th nivolumab infusion... and we are off to grab lunch and then go to the airport so we can go home to see our little munchkins!!!!  It's not the best news to go home with... but definitely not the worst!!!! WE are happy the brain is clear, and we will just keep praying these nodules clear up in the next month. 

Hopefully it can be life as usual for another month, and we can get Emmi and Colby into a nice routine with school starting up again!!!  I am going to miss my buddies at home with me all the time.  They are growing up waaaaay too fast!!!  I wish I could pause time and just live life forever how we know it right now ( well maybe yesterday before the Dr. came in haha) 

Moving Forward

The summer has been going well!  Bennie is feeling great, and he is officially off of disability and working full time.  Every year Bennie's family has a family reunion in Tennessee that we were hoping to attend, but unfortunately his Grandfather fell and broke his hip while visiting there.  Bennie's mom, Judy, and Grandparents (Pop and Granny)  went up a week before we were due to be there.  The day we were supposed to leave is when we found out that he would have to have surgery the next morning.   Since we were only planning on traveling there for a couple of days, we figured we would be better off here instead of in everyone's way while they were trying to care for Pop.  That happened July 2nd.... and currently Pop is still in the hospital very sick with an infection that happened after surgery, and his organs are failing because of all of this.  Judy is still up in Tennessee caring for her father a month and a half later.... and she was only planning on being there for two weeks.  WE miss them all very much, and hope to have them home as quickly as possible.  His parents are such a big support system helping with the kids through all of this and we truly appreciate having family close-by. 

Since airfare is so expensive in the summer, Bennie's parents were gone, and Bennie was feeling great we decided to let him go by himself to Tampa for the next couple of infusions.  I'm not going to lie it was tough for me.  Bennie did awesome.  He felt great, and came back home in less than 24 hours but its hard letting go of that role even for those two visits.  As his wife and caregiver I really feel that the only control that I have in this whole cancer mess is being with him for appointments, taking in all the medical information, and just taking all of that off of Bennie since he is already doing so much.  I can't sit in the chair for him and do the infusions, I cant do his bloodwork for him, and I can't take away his fatigue but I know at least I can help it out with being there for him emotionally and deal with the medical information side of it.  So it was tough.   I did enjoy the break of traveling, and just getting to spending time with the kids during the summer!!

Bennie's bloodwork looks great, and his liver levels that were elevated have all returned back to their normal levels.  His infusions were quick and simple, and we hope it keeps going like this for the next 2 years.  We go August 8th for his next infusion, and then we go August 20th for all of his scans/MRIs to see how everything is working.  If there are still no tumors he will get his next infusion that day, and then we keep chugging along for another 12 weeks!!! Scanxiety is starting to set in as we close in on scan day. 

A couple of weeks ago we also attended the funeral of Matt Lobaugh, who fought with stage 4 melanoma alongside Bennie as they were both diagnosed at the same time.  We were friends back in High school youth group at church before reuniting at MD Anderson over 10 years later to go through this rough time together.  Unfortunately a year into his stage 4 diagnosis the melanoma was too rampant to get into the trial that Bennie is in... and it sucks that not everyone is offered treatments that aren't approved by FDA.  Hopefully, more and more research and trials to treat and CURE melanoma keep advancing.  WE, the melanoma community, really need it!!! 

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. 

Back in the Sunshine State

We are back in Tampa right now and Bennie is getting his fourth and last infusion of yervoy and fourth (and hopefully more to come infusion) of the anti pd1 drug.  They did a chest x-ray and bloodwork and everything looks great!!!! Wahoo!!! So we will see if he gets any side effects from this round of drugs.  Hopefully it is smooth sailing for the next few weeks. 

In two weeks he will be getting his body scanned as well as a MRI of his brain to see how well this drug is working to keep the cancer at bay.  If he has any tumors pop up then he will be kicked off the trial.  This is a real nail biting time for us!!!!!! The next two weeks are going to be filled with anxiety as our minds play the "what if" scenarios like a song track on repeat.  There is so much going into these scans.  We came into this trial mainly for the chance to get the anti pd1 drug that is not FDA approved.  He has been getting that drug for the last 12 weeks, but only at a minimal dosage of 1mg.  If everything looks good on the next scans then he will just be getting the one drug, anti pd1, but at a higher dosage of 3mg.  So the more we can get of that the better, because we can't get it without being in a trial.... and it probably won't be FDA approved until October. 

The ASCO ( American Society of Clinical Oncology) Meeting is also in two weeks.  The conference is when all of the clinical trials from the past year are presented with the newest information and results.  The next years clinical trials and treatments are typically based off the presentations and results from this conference.  I am such a nerd I would love to be a part of it .... but for a normal joe shmo it would cost me 1500 dollars or so.  So I will pass. We won't see Bennie's Dr. the next trip because he is a part of the presentations, but he will be waiting close by for an email update from the Nurse Practioner to give him an update on Bennie's scans.  EEEEEE!!!!!

We are almost done here with the infusions, and then we are off to catch our flight back to Houston.  Tomorrow morning Emmi starts her first swim meet!!! It is exciting, because it is something Bennie and I enjoyed growing up.  But also kind of scary, because we don't really like her to be in the sun all that much.  Since Bennie has melanoma, the genetic potential for the kids to get it at some point is substantially increased.  We have a tent, loads of sunscreen, hats, sun shirts, and are as prepared as we can be to keep all of us covered up.  Hopefully we will be able to share with others at swim team the importance of staying protected as well, because I am sure someone will forget sunscreen and become lobster red.  I may just go around wearing a sign for free sunscreen, and squirt random people with sunscreen who may be getting toasty!!!!! I didn't read that in the code of conduct for the swim team!

Tiredness for the Lunsford's

I'm really not sure where to begin to update everyone!     Since the first infusion Bennie has had a cough and sinus congestion.  It continued to get worse, and then on Good Friday Bennie came down with a fever of 102.  After talking to his Dr. (who had already given him one prescription of antibiotics to try and clear it up to no avail) we decided to go to St. Lukes ER to get him looked over.  He was diagnosed with pneumonia, and they gave him an IV antibiotic and a prescription for the rest of the week to last until we went back to Tampa the following  Friday.  We went back to our regularly scheduled visit in Tampa on April 25th for his third infusion of yervoy and anti pd1 (nivolumab).  The Dr.'s checked him over, and did another chest x-ray since he was continuing to have fevers the entire week.  His x-ray looked good and the Dr. thought the fevers were more than likely a side effect of the drugs he is on the clinical trial for, and is a common side effect for one to get.  More often someone taking these drugs may get a fever here and there, but Bennie has been getting them consistently around the clock.  We got the infusion, and flew back the next morning!  Right after we got home he had 101 fever again.  The entire next week he was down with fevers.  We finally got him on a dosage of Motrin and Tylenol every 4 hours that kept the fevers at bay by the weekend after his third infusion..... but then he started having headaches!   UMMMMM headaches don't really go over well in this house, especially since the last headache he had his brain was hemorrhaging, herniated, and about to explode from a 3 cm tumor in his brain.  Bennie was quite nervous about this new finding. 

Here is where the caregiver side of the story comes in.   After 3 weeks of Bennie having a fever and being pretty much out of commission with everything.... I was tired!!  I started to get frustrated when we would be starting an activity (bathtime, dinner, going to the park etc.) and Bennie would get the "I'm not feeling well look in his eyes".  I felt bad for getting so frustrated (not at him but just at our situation because we all missed him being around and we were sad) and I prayed and prayed to God that he would give me some extra compassion so I wasn't so short tempered at the kids and Bennie.  I started coming down with a cold a few days after praying I thought, but then the same day it started turning into more of a fever/flu type illness.  I went to the Dr. and got some meds, but I just was ready for some loving to come my way.   I really was in no mood to care for anyone.  I felt awful with a fever, and then I realized I think God is helping me with my compassion issue by letting me know how Bennie has been feeling!! Well we trudged up to the ER at MD Anderson since it would be the quickest way to get Bennie's head checked out, and they were really focused on Bennie's ongoing pneumonia and fever.... so they admitted him.  Luckily, thank heavens, there were no large tumors about to erupt Bennie's brain according to a CT Scan of his head.  But there was a significant sinus infection.  The antibiotics went on throughout the night.  When the nurse came in the middle of the night and asked "How is your head" I almost answered "oh man its killing me" but then realized they were asking Bennie!  Ha!  We never saw a Melanoma Dr. while we were in the ER, but one finally came by to see him in the morning.  She was familiar with the clinical trial he is on, and felt like the chest x-ray wasn't too bad, and since he hadn't had anymore fevers over the night she let him go with yet another prescription of antibiotics for the week to target the sinus infection.  She and his Dr. in Tampa feel like the fevers, cough, sinus, ect are more than likely all side effects of his immune system ramping up into overdrive.... and he will have to tough it out as long as its not getting worse.  If it gets worse they would give him steroids to calm down the immune system,  but that also would delay treatment and undo what we've done the last few weeks so to speak.  So he must try and muster through this.

So, no fevers since being discharged from the hospital!!! Hopefully the majority of the fevers he was having wasn't due to the drugs... maybe is WAS a sinus infection.  WE will see.  We go back for the fourth infusion of yervoy and anti pd1 this Friday, May 16th.  It will be the last time he gets both of the drugs together!!! Then in two weeks we will fly back to Tampa and Bennie will get scans to see if this treatment is doing its job by not letting any new tumors grow!  If he has no tumors he will just get one drug (nivolumab) every two weeks.  If he has any tumors he will get kicked off the clinical trial, and we will be knocking at MD Andersons door to see what is next.  PLEASE pray for good results in two weeks.  WE want to stay on this trial for as long as possible, because this is the best treatment out there right now for melanoma.  We worked so, so, so hard to get to these drugs!!  There aren't a whole lot of extra options if this doesn't work....so we are very anxious for the scans coming up!!!! Also, please pray that Bennie won't have the fever side effects this next round, because it really throws him out of commission with everything!  Going to work,family, living life is pretty much on hold when you are shivering away with your body aching and feeling like complete crap!  So, hopefully the antibiotics helped that issue and the fevers will stay away!! Now I know how bad Bennie feels with fevers, and I may think a little harder with my wording when praying to God to give me more compassion next time (but he sure gave me some extra)!!!

Here is a pic of Bennie in the hospital after they said his brain looked alright:

IPI/PD1 Dose number Dos

We woke up quite early this morning and flew to Tampa for Bennie's second infusion of ipi and anti pd1.  We stopped by for some lunch after we got off the plane because we knew we would have a long day at the hospital.  We got to Moffitt and Bennie had some lab work, and we met with the nurse practicioner.  She said everything is looking great, and Bennie's labs looked perfect.  She sent us down to the Clinical Research Unit to start the medications, which lasts about 3 hours.  Then we will go to our hotel and chillax!!!

Bennie and I waiting out the 3 hour infusion! 

So last month went by pretty quickly, and with relatively few side effects.  He's been battling a sinus/chest cold for the last month that isn't getting better quickly so she gave him a Z-pack to kick that out.  He also has had some fatigue, which is one of the biggest side effects to be expected with both of these drugs.  Other than that it has been ok!! The side effects tend to show up with each subsequent infusion, so we are to be on the look out for anything we need to report.  Some things can be quite serious, so the earlier it is caught the easier to treat in some cases. 

Our next trip back out here for Infusion number 3 is on April 25th (granted no side effects throw him off schedule), then we come back May 16th for infusion 4, and then we come back May 29th for scans to see if this is working!! If the scans look good, and he has no new tumors, then he can continue with just the anti pd1 infusion every two weeks (instead of every 3 weeks).  So we will see what all this brings for us....but we are so blessed to have this opportunity.  We met a guy today in the waiting room that also had brain tumors resected and also had a couple lung mets pop up in November.  He travels here every two weeks and just the anti pd1 drug has shrunk his tumors by 80% (and the brain has been clear since the middle of last year)!  So great news, and positive stories are so awesome to hear! 

We love, love, love everyone here at Moffitt from the patients, nurses, doctors, and staff!   We can't wait to fly home to our sweet little ones tomorrow who are very much enjoying their time with cousin Trey, Aunt Heather, Mimi, and Pops!!