That Method Didn't Work, So What Do We Do Now?

Back in May and June, I shared with everyone the details of Robert's diagnosis of  Idiopathic Thrombocytopenic Purpura. This is an issue where his body is attacking his platelet count and causing it to drop over time. Since your platelets are what help your blood to clot, they are kind of important.

When he was given the diagnosis, the doctor put him on a daily dose of Prednisone. So, for those of you who may have thought it was putting on weight because of his puffy chipmunk like cheeks, it was because of the medication. He had to have blood work done just about every week to see if it was increasing his count. In the beginning, it was. After just a couple of weeks, his count increased greatly. We were ecstatic. The medicine was doing its job. But, then his count started to drop again. The doctor said it is not uncommon for a dip every now and then. It will usually spike back up again. Only his hasn't. While it is not nearly as low as it was when he was first diagnosed, it is still low. 

So, the doctor wants to try a new approach. He wants to do an infusion similar to what they do for many leukemia patients that have low platelet counts. This will mean he has to spend anywhere from 4 - 6 hours a day, once a week in a chair with an iv in his arm to pump the medicine in him. This is a fairly new treatment for ITP and has been shown to have great results. We certainly pray it works on Robert. If not, the next step is to remove the spleen.

The doctor assures me that having his spleen removed is no big deal, but I don't see it that way. Your spleen helps produce your white blood cells. Your white blood cells help fight infections. So, you are at greater risk for developing many infections. Throw in a disease that can cause you to choke, causing fluid to collect in your lungs and put you at a higher risk for pneumonia, it can be an issue. I want to keep my husband around for as long as possible. I don't want to add more complications to the disease that I know will one day take him from me. 

Plus, the recovery time from this surgery can be lengthy and difficult. There is usually a lot of pain and discomfort as well as risks that are associated. For now, all we can do is pray that the infusion treatments do the trick. He will start them in a couple of weeks and I will keep everyone posted on the progress of them.

Her Legacy of Love

Five years ago today, we were getting ready to make the long drive to Cleveland, OH to say goodbye to one of the most important people in my husband’s life. His mother had passed away the day before and we were make preparations to make the trek to celebrate her life.

So, here we are five years later and I have such bittersweet emotions. I am deeply saddened that she is no longer with us. I know that each one of her children are, too. However, I am relieved because I know that she is no longer suffering from the havoc that Huntington’s Disease caused on her body. I feel so bad for Robert, Debbie, Craig, Bill and Kevin because they no longer have their mother in their lives. They no longer get to call her up and share the joys of their lives with her. But, I am happy because she spent her days shaping each one of them in to the wonderful sons and daughter they are today. I hate that we lost her – and many others – way too soon to this dreadful disease. I am hopeful though because I know we are one step closer to finding a cure for this disease that rips apart so many families.

Above all else, I am so grateful for this wonderful woman that I only had the opportunity to spend time with on four occasions in the six years that I got to know her. Our time together was short. She was already showing the effects of Huntington’s Disease when I met her. She could only talk and carry on a conversation the first time I saw her. And even then, it was more like talking to a two year old where she only said a few words instead of full sentences. What I remember about those conversations is what she would say – almost on repeat – to Robert several times a day.

She constantly told him “I love you”. Even when she couldn’t say much, she worked hard to say those words and to let him know that he was loved. That is the legacy that she left behind that still resounds today. Above all else, she loved her children dearly. They meant the world to her and she made sure they knew that. Ask any one of them, and they can share story after story about the loving, thoughtful things she did for them. 

There is a saying that the legacy you leave behind is the life you live lead today. The life that Cheryl Everett lived was a life of love of her family. That is the legacy that lives on today. Nobody that had the opportunity to have her as a part of her life would ever question her love for them.  So, that is what I choose to remember about her today – that legacy of love that she left with every one of her children, her grandchildren, her sister, her brother and every other person she came in touch with. Remembering that makes me happy because I had the opportunity to spend a few moments with her and experience that love for myself.

It’s been five years since she stopped suffering. That doesn’t mean we aren’t still saddened or that we have stopped missing her, but it does get a little easier each day. Her legacy of love lives on and I see each and every day in her children.