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)!!!
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