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!
I came to your blog after reading about you, Bennie, and your two beautiful children from Addison's Army of Angels. I will be praying for you. I can only imagine how tough this is for you all. I know things are going to be ok. I know God will lead you to the right thing. Much love to you all.
ReplyDelete-Anjannette aka Light Skinned Mother
http://lightskinnedmother.blogspot.com/