Leukemia Treatment

My name is Michelle Pence. My Husband is Joshua. He was diagnosed with AML Leukemia at the end of 2013. He got his induction chemo and it was the worst time of his life. He was allergic to the chemo so he got blisters everywhere on his body. He was vomiting so bad that he threw up the lining of his esophagus. A month after he was finished with that round he had another bone marrow draw and the doctors told us his cancer was back already, and more agressive than before. We were running out of options. He got a call that we would later find out would save his life. The call was for a new trial drug. It wasnt approved by the FDA yet and could potentially be very dangerous to try. We had no other option. We had to get an apartment down in Indianapolis. We went down and started the trial drug which was essentially chemo pills. Josh got so sick. They ran all kinds of tests on him while he was taking the drug. He was absolutely miserable. After 2 months of being down in Indy and away from home it was time for another bone marrow draw to see if the pills worked. They did!! The next step was another round of liquid chemo and his bone marrow transplant!! They found a perfect match for a donor! We thought this is it!! This is going to work!! The day he got his transplant was the scariest day of our life. It was the longest waiting game ever!! At 2am on May 9th 2014 was the first day of Josh's new life!! He got the transplant and his counts slowly improved!! They told us about something that could potentially be life threatening called graft versus host disease. They told us we would find out if he had it 90 days after transplant. Well of course with our luck right on day 90 he started showing symptoms of gvhd! Another long battle... He is currently still fighting the gvhd. We got home from Indy with him on high doses of steriods and about 20 pills twice a day. But he was alive and thats all that mattered. He started having seizures and chest pains. We had to rush him to the hospital because we thought he was having heart attacks. We got there and they said nothing is wrong and sent him home. Two days later we were back. They took him by ambulance to the heart institute at a different hospital. They went in and one of the main atteries in his heart was 90% blocked with blood clots. The medicine that was saving him from one thing was killing him with another. Three more trips to the ER and two more stints. We thought that was it he will be ok now! He decided to go to walmart after dropping me off at work. Of course on that day i forgot my phone so i tried calling him all day from my work phone with no answer. At 5pm that day i got a call from his mom. Josh was on life support in the hospital. His heart stopped while he was in the car in Wal-Mart parking lot. They couldnt give me any answers. They told me they werent sure if he would pull through or be able to even talk. He hadnt shown any movement all day. I walked into thw hospital room and kissed His head and started rubbing his arm. He moved!! He started moving and waking up!! The next day they took his ventilator out and he was normal!! I couldn't believe it!! It was a miracle! He now has a defibrillator/pacemaker. His gvhd has made it so he can't hardly move. He can't extend his arms, move his wrists, or even bend over to pick something up. His skin has blisters all over and is so dry and cracked it splits open if he moves too far. He is in constant pain with no relief. The doctors wont give him pain meds and just keep telling him it can all be reversed. But nothing is changing. He has been like this for almost 4 years now. His medical insurance isnt covering most of his transplant medication because he had medicaid when he started this journey and they switched him to medicare. So now medicare is saying they wont cover it. We have tried calling the companies personally to explain our story and got nothing in return. We have to buy little bits at a time just to try to keep him at the very least not getting any worse. He has had the worst journey through all this with no light at the end of the tunnel. I am working 40 plus hours; a week to try to just stay above water. Im trying to give him the best life he can possibly have. We are drowning in medical bills and medication costs. We bought a jeep to get us back a forth to Indy for his doctor appointments. Well we got screwed over on that because its currently in the shop not drivable. We are trying our best to get it fixed and out of the shop but we just cant afford it with everything else. Thank you for reading his story and any donation will help us out so much!! Im trying to show Josh that there is light at the end of the tunnel and going through all this pain and hurt will pay off!! He is a walking miracle and my hero!! All of the donations will be going straight to medical bills and medication costs. We are going to try to get his jeep out if the shop also so we can go to his doctor appointments.

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Michelle Pence
Fort Wayne, IN

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