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.