Amazing

Some amazing things have happened in the last few days.  For about a week I will not lie that Bennie and I have been feeling really worn, and a bit of our hope had left us.  We have been getting bad news consistently since January, and Bennie had been getting really worried and anxious about biochemo coming up in a couple of weeks.  We got an appointment scheduled with Dr. Weber at Moffitt Cancer Center in Tampa, and we were really excited to get to meet with him about a second opinion.  A couple of days before we left I had the opportunity to meet with some ladies who have been praying for Bennie and I.  The hope of healing that had started to dwindle came back with the realization that the Dr.'s are not the ultimate healer, but rather Jesus is. 

So we got to Tampa late last night around midnight.  We woke up this morning and headed out to meet with Dr. Weber.  We got there and were immediately called back!  That never happens.  The first thing he said when he came in was, nice to meet you but I am confused.  He said, "I have read all of your history and am baffled by the fact that you aren't in a clinical trial."  We said we are confused too, that is why we are here!  He pretty much confirmed that biochemo was not a good plan, and would not be very useful.  Biochemo would decrease Bennie's quality of life so much, and there isn't enough scientific logic to support going through with it.  Biochemo is so toxic and the rationale for using biochemo right now doesn't add up.  All that to say his suggestion was to keep on the drug that he is on now, and stay on it until it is done working.  When it has run its life he says that is the time to jump ship and get into a clinical trial.  The time it could work could range from 2 months to 3 years or longer.  There are so many new and improved treatments and clinical trials that Bennie really should have been offered one in the first place after his first treatment failed.   What we saw at Moffitt today is what we envisioned MD Anderson doing.  Our Dr. suggested if we don't feel comfortable with our current Dr. then we should consider switching to another Dr. at MD Anderson.  At least we are connected with this Dr. and we can get to him at any time.  He emails back very quickly, and will answer any questions that we have with future treatment or options.  We feel a lot better!  We both had a pretty bad feeling about going forward with the biochemo, and he just confirmed all of our thoughts were valid. 

We felt like a weight was lifted off of our shoulders, and decided to see how long Bennie could last on the beach before getting torched.  (since one of the side effects of the drug is severe sun sensitivity)  Bennie lasted all of 20 minutes or so before we went back inside to find him sunburned.  So we decided to ex Universal Studios tomorrow before flying home, and we decided to just have a nice dinner.  I made reservations for 6:30.  Here is the next awesome part:  We met an amazing couple beside us, and he was telling us about his family that has been treated at Moffitt Cancer Center.  He was telling us about how great the Center is, and they even offered their home if we needed to come back here for treatment.  They were the most genuine and kind couple.  They got our names so they could pray for us, and we exchanged phone numbers.  When we were ready to leave and pay, the waiter came over and said that the bill had been paid for!  We were blown away!  Bennie called back to thank him and he just said you don't need to thank me Jesus just puts people where they need to be.

I truly feel that God has knitted some very important people this last week into our lives for a specific reason.  Prayer is powerful and I can see that playing out this week.  What we heard at Moffitt wasn't amazing brand new information news... its just the news that we needed to hear.  Its the fact that we can begin to feel confident for Bennie's treatment.  Its the fact that there are so many people supporting us on this journey, and God has placed these people in our lives for a specific purpose. 

So now we wait until Monday for Bennie's brain MRI, and then on Tuesday we get to talk to his Dr. to go over all of our concerns with valid points.... and a very reputable Dr. to back us up.  Hopefully she is in agreement, and if not we may need to try and get another Dr. 

Prayers for good results on Tuesday, and that our Dr. will be understanding.  Also, prayers for safety as we travel back home and pick up our little snuggle bunnies!

The Ordinary Life

The last two weeks have been somewhat ordinary.  It's the first time ordinary has been around since January.  Two weeks ago we got the big shocker that Bennie's melanoma had progressed to his lungs, liver, hip bone, and his hip mass grew very large.  They put him on Zelboraf, and he has been doing great for two weeks now.  He goes to work, comes home later, looks normal, and life feels normal.  He has some joint pain, his eyes are super sensitive to sunlight, and has a bit of a rash.... but we can work with all that.  We would give anything to have the ordinary life we had when all we worried about was how we were going to mow the lawn, and get to the grocery store in one Sunday afternoon.  We went back to MD Anderson today to see how he was doing on this new chemo drug.  They said he is doing great, and upped his dosage today to see if he can tolerate it alright.  The Dr. probably thought this was going to be a quick visit, but alas we had different plans.  For two weeks we have drafted pages of questions, and we were anxious to get all of our answers today.  We were so shocked last week that we left without asking any questions.  The Dr. wants to do biochemotherapy in May.  This is not typically done while on Zelboraf, and we were quite confused. 

1. Zelboraf only "usually" works about 4-6 months (some people have been able to stay on it for 2 years) before it develops a resistance and finds another way to multiply, and the cancer will grow back with a vengeance. 

2.  Zelboraf is working great for Bennie right now, and in 2 weeks his hip tumor has shrunk from the size of a softball or bigger to the size of a golf ball.

3.  Dr.s know this dramatic improvement will not last, but some studies have shown that breaks of Zelboraf can help in the developed resistance... which would give him more time on this drug that works

So our Dr. came up with the idea of combining biochemo, and during the weeks of biochemo Bennie would take a break off of the Zelboraf.  There is no research on this... which is why we were so confused.  Only one other person has tried it out and he did alright.  But we have to be confident in knowing this is a good idea.  So, we may go for a second opinion at Moffitt Cancer Center in Tampa, Florida.  They have done some great research out there as well, and it will be nice to get another opinion on if this is a brilliant idea.  We need to be confident in going forward in the best treatment we can get.... because we only have one shot.  Biochemo will stink!!!! ( one week in the hospital at a time, 5 different chemos, and feel really really sick/crappy)  If it works... we can deal with all of it. 

Our other question was what if Zelboraf/biochemo doesn't work... whats next?  Her answer.... "well it depends on what's out there at that time."  Good grief... I told the Dr. that she has 6 months to find a cure... and she better start working more overtime.  This was an exhausting visit.  We were both SO anxious, because we knew we would get answers that we didn't want to hear. We pray that we will decide the right treatment to move forward with, and that it will work!!! Melanoma sucks. 

An analogy for the day... There are many different treatments to try, but you have to pick the one that is going to work for you... and pick it in the time before your disease wins.  It's like trying to pick out the chocolate in the box of chocolates that you like the best before you get full.  And you hope you don't get all the nasty ones before you find the one you like! That's in a nutshell what we are battling right now. 

Also, praying that Bennie can handle the higher dosage, and that it keeps working really really good for a really really long time.  ALSO praying Bennie's brain MRI comes out clear in 2 weeks.  We appreciate all the prayers and support!!!

Don't Stop Believin'

Bennie and I came into Md Anderson laughing that we should change the harp music to a cover band of Journey singing Don't Stop Believin, or Queen singing We are the Champions. We left Md Anderson a lot sadder.  We got broad sided.  We knew his tumor grew a lot.  But we thought they would just come in and say... oh the treatment didn't work, but here is plan B.  Well they told us the treatment didn't work.  They also said he has many tumors in his lung, one in his liver, his hip bone, and his hip muscle tumor grew very large.  So. That. Stinks.  Then if we hadn't been sucker punched enough, they told us his cells they were harvesting didn't grow.  So surgery and chemo for 2 months was for nothing.  Wow.  So, the plan is now to start a drug called Zelboraf that targets the gene mutation he has for 2 months.  That is a pill that he can take at home.  The side effects for that can be a bad rash, severe sun sensitivity, severe joint pain, and probably others they just let you find out about on your own.  Then he will do biochemotherapy around the end of May.  He will get admitted for biochemo for a week at a time.  Then they will rescan and give us good news then.  You fall down twice... stand up three.  We are going to disregard this day, and enjoy Emmi's 6th Birthday and Easter.  We also told Emmi specifically that Bennie has Cancer and not just a BooBoo.  MD Anderson gave us a kit for her age specifically, and a social worker told us how to communicate all this with her.  She was crying yesterday when we told her we had to go to the Dr. this morning, and she seems to understand the conversation we had with her today.  They gave us emotion colored bracelets that we can wear with her depending on our day.  Praying that this new drug doesn't come with a truck full of side effects, and it helps really really quickly.  We aren't too devastated yet.  We still laugh, and have quite the sense of humor about this.  Once insurance says they approve this drug we will go pick it up from the pharmacy and wait and see what it does. 

We're Back

WE are back from Hawaii, and we are back at MD Anderson.  As I speak Bennie is getting his CT Scan completed, and I am in the waiting room listening to a lady play a harp.  It sounds like a funeral in here.  I don't want to sound rude, but I have been awake since 5am.... and I am going to lose consciousness with all this tranquility.  Tomorrow morning we will go to the Dr. and see what she has to say about the next step.  Unfortunately, we already kind of know his last treatment didn't work.  His tumor is about twice the size it was when we first started here.  So we are going in to tomorrows appointment with the probability of discussing the "Plan B."  Once we hear what that is we can plan for the future.  We have no idea right now what that is.  Praying that the treatment option provided will work, and doesn't have an impact on his quality of life.  We had a great time in Hawaii.  Bennie felt really good, and we got to do so much.  The kids were absolutely perfect, and pretty much did everything that we wanted to do.  We couldn't have asked for a better time.  We were so worried about the sun affecting Bennie, but it was pretty much cloudy everyday.  God took care of the sun for us!  We saw lava, went four wheeling, snorkeled, whale watched, rode a submarine, and just enjoyed every second of being together that we could.  Right now we just live day to day, and take every day that Bennie feels good with as much joy as possible.  We will be looking forward to celebrating Emmi's 6th Birthday this Saturday, as well as celebrating Easter!  Well I guess I will try and stay alert.... the people turned off the lights in the section I am sitting in, and the harp player has a play list of about 40 songs.  zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Chugging Along

Bennie is still recovering, and heading in the right direction. He is still really tired, and his appetite is still in the process of bouncing back. He went to work for a little bit on Thursday, and when I picked him up (he's not supposed to drive for a week after treatment) he said he had a headache. He took some medicine for it, and it got worse really fast and then he even got sick from it. He was not doing good..and looked pretty bad. I was so worried, and also a little sad. It's hard to see him in pain, and looking that sick. Most days he is improving, but then you see him look so sick and realize what he is battling against. He went to bed at 6, and then woke up the next morning at around 7 am. He felt better. Last night I read the discharge sheet that you have to keep hydrated throughout the day, and eat throughout the day to keep blood sugar stable. His blood work shows he is anemic (normal side effect)... So not eating and drinking can bring on a bad headache. He doesn't really feel like eating or drinking so you have to bug him to do it. He was going back to work again, and so I texted Matt (bennies coworker and good friend) and asked him to try and throw him some crackers and water throughout the day.... So someone else could bug him for once!! Well Bennie caught on, and knew something was up at work!! But he feels great tonight, and thank you to Matt for helping Bennie with that today! Bennie was not about to stay home from work. He loves it, and can't wait to be there when he can. He seems to be back on the path to recovery, and now I think he learned his lesson that he just has to put in a little more care to his body. He is so sensitive right now to all that, and his blood is just off right now. We are still excited to leave Monday, but after seeing him sick the other night it has me a little on edge. Everything was going so good for a couple of days then went downhill. I'm cautiously optimistic going into this weekend, and just want to make sure he rests and takes care of his body! It's hard to make him do that, because he has so many projects and he's just a busybody!!!! He can't sit still, and never has been able to. Lucky for me, I always have someone to do my house projects for me. We had a relaxing evening watching Duck Dynasty tonight, and I haven't heard him laugh that hard in a while. I've never really watched that show before, and it was hilarious!! Well I will update again Sunday to let you know if Bennie survived his rest, and ill let y'all know if the kids are safe. My amazing father in law built a tree house (my dream tree house from when I was younger) while we were at the hospital last week. The kids are playing in it all day Saturday, and its about 8 feet in the air. If Bennie doesn't get sick again (which he won't because he knows his duties now) and the kids stay in the tree house (they will because their JuJu and Pawpaw will be playing up there with them) we will still be on a plane to Hawaii! My parents got to Hawaii on Wednesday, and said there are whales everywhere! When we get back he will get rescanned the following week to see if these treatments have helped. If they have.. He will get readmitted the next week for another round. If its not helping we go to plan B... Which we aren't positive yet what that is. Until that day we are just going to look forward to spending some much needed family time together!

Eagle has landed

We are home!!! We got home yesterday evening, and a day earlier! Bennie is doing alright with the normal side effects like itching, fatigue, weak, ect. The kids are so happy, and I Am beyond happy to be back home and with them!! All we have planned this week is blood work on Wednesday, and nursing Bennie back to his normal self. It is so nice to come back home to a bed, and sleep in it without nurses coming in every 5 minutes. Interleukin sure isn't fun, but Bennie is a strong guy to take it on. We got an itemized statement that shows how much was billed to insurance... For one week it was 152,000 dollars! Each bag of the interleukin cost 15,000 dollars. So the first week Bennie had 9 bags. He had the equivalent to a house infused into him. So that was interesting to see. Luckily our insurance is nice and approved to pay for it. One night to stay in the room costs 1500. I need to request a better chair for that amount. My own personal pillow top mattress, and Perry's steakhouse dinner should be waiting for me for that price. In other news, the Dr. said Bennie wouldn't be able to go to Hawaii. I almost fell over until he finished with the only way he could go is if you take me too. I was about to throw my shoe at him. All the Dr.s and nurses that we have had at MD Anderson have been wonderful!!!! Everyone is so nice there, and we have been lucky to have met some great people there. I have met a lot of people through blogs and support groups that have been so wonderful to me, and wouldn't be able to get through this without them. We are still so blessed by so many people helping us out everyday!! Thank you so much!!! Also, we are so happy that this last week is over, and we are still praying for a great recovery week so we can depart to Hawaii.

Round Two Complete!

Yesterday was really rough for Bennie.  He started off great, and insisted he eat a chicken biscuit from chic-fil-a downstairs.  So I got him one and he ate the whole thing.  His stomach was killing him afterwards, and ended up losing his breakfast right before I ate my lunch.   He was nauseated most of the day, and felt like complete poo.  He was itching and uncomfortable, and the worst was he couldn't get to sleep.  They gave him some Ativan yesterday which really helped him catch some zzzz's.  Then the next dose came a little late, and he got some Demerol which helped his sleeping.  The Dr.'s were concerned about some crackling in his lungs, and ordered some breathing treatments.  Then Bennie said he really wanted dinner, and thought of ordering a pizza and having it delivered to the room.  I of course remembered breakfast, and advised him against that.  He insisted, and I found a Chinese restaurant down the street to get him some fried rice.  I thought that would be way better than pizza.  He did well with dinner, and then got another dose of Ativan to help him sleep.  He went to bed at 8.  I went to bed at 10 after I watched a couple shows.  The Ativan wore off at midnight, and he woke up itching and completely stressed out he couldn't sleep and felt miserable.  So we waited for his next dose.... it didn't arrive until 2:45 am, and his Demerol helped him sleep the rest of the night.  Sleep was very minimal last night.  We woke up this morning, and he had a shower as well as a long walk around the floor.  The Dr. came by and said he wanted to wait for the seventh dose to make sure his morning was going ok.  He did another breathing treatment for his lungs, but the Dr. decided he didn't want to proceed and get into the danger zone.  So he is in recovery mode right now.  We will probably be here through Sunday, and pray his recovery goes smoothly.  I pray his lungs clear up, his fluid goes down, his stomach feels better, and his anxiety subsides.  He is having problems sleeping, and is agitated.  They really can't give him a lot because his blood pressure is low, and they don't want it to go lower.  So... he just took a Xanax and will hopefully sleep for awhile!!!!! He is most pleasant when knocked out, and when he is awake he is grumpy (anyone would be in his condition).  

I will keep everyone updated on his recovery!!!