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!!!