A Happy and Thankful Life



distractions

I had a work convention that I had to attend today as an exhibitor. It was enough of a distraction that I was able to get through the day. I’m thankful for that distraction as I’m not sure how I would have made it out of my bed today if I didn’t have a reason.

Last year, April 21st was a Thursday and we received the official word that John had relapsed. As I was read through the other blog and skimmed my posts, the rawness of what we went through rushed back. I wouldn’t wish what we went through on anyone. I’ve copied the post that started off our third round. I wanted to be the last because I wanted him to be cured. I never thought that it would be the last because he wouldn’t be here. He is still desperately missed and loved every day.

I know I haven’t posted in a few months. When things are quiet and stable, I tend to not want to post. This blog is a way for me to get out of my head everything that is going on his treatment. It’s therapeutic for me. And even though I know it’s not rational, I don’t want to jinx it by posting about things continuing to go well. After John’s issues with his blood clots and subsequent treatment, things have been quiet. He would go in for monthly blood tests, get the all clear and continue to go on with his life. He was still on all his medicine and still had his immune system suppressed to limit GVHD. We visited his family for Christmas and he received his Bachelors in March. When people asked how things were going, I’d answer “Quiet. Other than his GVHD rash, everything to stable and quiet.” Not anymore.


On Monday, we went in for his normal monthly visit. He had his blood drawn, we were called back to a room and after chatting with the nurse a bit, we waited. And waited. And waited. John was getting antsy and I told him to calm down because there is always a good reason any of the staff is running behind. We never know what is going on in other rooms. What news are other patients receiving. His doctor walked in with a serious look and for a moment, I thought he was trying to play a joke on John. He wasn’t. He told us that John’s counts had dropped a considerable amount from last time. His platelets were now at a 97 (normal range begins at 140).


There is never a good reason for this to happen. The doctor told us that it could mean that the bone marrow took a hit from a virus and it has to recover or that he has relapsed. We needed to wait to find out. He wanted to retest John on Thursday to see if there was any change. John was told to stop taking the coumadin in preparation for a possible bone marrow biopsy as well as to stop the prednisone and prograf to allow the bone marrow to start to recover. The thought of relapse silenced us. I saw the mixed look of defeat and shock on John’s face. I’m sure mine had a similar expression. Things were going so well. You’d think we’d learn.


We left the hospital in shock with an appointment scheduled for today. John wasn’t in a good place. I had to give him a big kick in the pants. No, a relapse is not good. However, this is not the end of the line. There are additional treatments they can do. The thing with cancer, and with John, if you have a fighting chance, you have to give it your all. Once you admit defeat, there is nothing you can do. Medicine may heal your body, but can’t heal your spirit. By the next day, he was ready to fight whatever it is. 


It was a really long wait to this morning. We prepared for the worst and continued to pray for the best. We arrived at 7:30am, John had his labs drawn and was then taken back to a biopsy room. His labs didn’t change much from before. This didn’t surprise me. They gave John ativan and some pain medicine to help relax him as well as help with the pain. He becomes quite talkative with the ativan and I can normally tell when it hits him. The main NP came in and told us that the doctor would be in after to discuss the paths, depending on the results. After giving the medicine time to take effect, they did the biopsy.


More than an hour later, his doctor came in to talk with us. The leukemia is back. Even if we were prepared, it’s so devastating to hear those words. We have been given a plan of attack. During the last few days of not being on immuno suppressing drugs, John’s GVHD has flared up. This means that his immune system is fighting. The idea is to not suppress the immune system and let it go full force at attacking strange cells, including the leukemia cells. Ideally this will work to put him back into remission and get rid of those resistant cells. They will monitor him closely to make sure the GVHD doesn’t get too out of control. However, they are hopeful that this GVL (graft versus leukemia) will do the trick. It has worked in other patients. If it doesn’t work, there are other options available. He is just wanting to use John’s immune system to do what it is designed to do.


As I wrote before, this was not how we thought the week would end up. However, he has relapsed and we have to fight on so that he can live on. I’ll begin to post updates again as things happen. I just ask for continued prayers that John has the strength to fight this, and the love, trust, support and guidance he needs from me, friends, family and the hospital team to continue this fight.
Round three…here we come.

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