If I Had Known...

I heard it again the other night. A statement somebody made that I had to bite my tongue harder than I ever have in my entire life to stop from saying anything...

"If I had known he had Huntington's Disease, I never would have had children"

We were at our monthly support group meeting and a mother made that statement. Now, to clarify, she was upset. She had lost her husband, one daughter and was dealing with a second daughter who was in denial that she has the life robbing disease. Her husband was diagnosed with the disease after they had children. The second daughter is refusing any treatment to manage the symptoms and is refusing to talk to her mother. So, I can understand how she would feel that way at the moment. I can only imagine what it would be like to bury a child. Nobody should ever have to do that. It is not the natural order of things. 

I can understand the thought process to an extent. Robert and I struggled with the decision to have children because we knew that we risked bringing a child with Huntington's Disease into this world. In the end, for reasons that have nothing to do with his diagnosis of Huntington's Disease, we did not have children. Plus, I can imagine that she feels a lot of guilt because she brought her children into this world and they have this disease. Hindsight is 20/20, though. It is much easier to look at how you might have done things if you had all of the information, but that isn't the way the world works.

That same statement is one that Robert's grandmother made on more than one occasion. She even told me that I should never have children, either. She said I had no business having children because they might have this awful disease. That always made me so upset. Saying that is wishing Robert away. To me, it is saying that his life wasn't important and that he doesn't deserve to be here. It is saying that the man that God chose for me shouldn't be here. I disagree with that. 

One of my favorite movies helps explain why I have a huge problem with what she said. It is defined as a Christmas movie because it takes place on Christmas Eve. However, the meaning applies every day of your life. I am referring to It's a Wonderful Life. If you are not familiar with the movie, the gist of it is that a man wishes he wasn't born and is shown how different life would have been for so many people he knew as a result. Once he realizes how much he helped those around him, he realizes that it does have a great life and that he had a huge impact of those around him. 

One of my favorite quotes is in this movie... 

"Strange isn't it. Each man's life touches so many others. When he isn't it around, he leaves an awful hole, doesn't he?"

I can tell you that if Robert wasn't around, there would be an awful hole in my life. I am betting that many of you reading this can say the same thing. Robert has touched the lives of his brothers, sister, daughter, co-workers and friends. Plus, there is all of the kids that he teaches on Sunday mornings. Kids who still run up to give him a hug when they see him at church years later. And that is only skimming the surface of the people who he has touched. If he wasn't around, what would we be like?

Her statement was also hurtful to Robert. He said that it made him feel like he had no right to be here. It was if she was saying that he wasn't good enough to be alive because he has Huntington's Disease. That is wrong. 

The reality if that any one of us could be hit by a car on the way to work tomorrow or have a some other catastrophic thing happen to us. For all I know, Robert may never develop symptoms of the disease because he will die some other way. Instead of making hurtful statements like that, we need to enjoy each moment we have with that person in our lives that has tested positive for Huntington's Disease. 

So, if you are thinking that you wish you didn't have your children because they have HD, don't dwell on it. Instead, be grateful for the time you have together and consider the impact he or she made on your life and the world around you. Chances are, the world is a better place because your child was a part of it. 

An Appointment With the Neurologist

Robert had an appointment with his neurologist yesterday.

Mainly because he it has been over a year since his last appointment with her and he is supposed to have yearly appointments to discuss his progression in the disease. It was also in part because he has been experiencing an issue with choking on certain foods for a while now. He has to be careful what he eats because it can cause him to start coughing and it raised some concerns for us. After all, choking can be a major problem in a person with Huntington's Disease. He also wanted to mention the struggles with his platelet count and get her thoughts on it. And discuss his continued Restless Leg Syndrome issues.

He walked away with the best news ever:

Do you see that?  "NO SYMPTOMS OF HUNTINGTON'S DISEASE". 

Now, for anybody that has tested positive for Huntington's Disease before they show symptoms, you know how awesome that little piece of news is. Especially when the minor symptoms such as the chorea and cognitive issues usually begin showing up somewhere between the ages of 35 - 45 and you will be 46 in a few short months. A notation like this one is the best news you could hope for. Even though you know there are still some issues that need to be addressed. 

The doctor thinks that the issues with the choking have more to do with acid reflux and other gastroenterological issues versus Huntington's Disease. Based on his symptoms and how the issue manifests itself, it does not present as a normal symptom of Huntington's Disease. So, he is being referred to a gastronterologist to discover the real issues. 

As we thought, the platelet count issue is not related to Huntington's Disease. It, too, is a separate issue that will continue to be addressed by his Hematologist. She also said that taking out his spleen should not be a problem. I was a bit concerned how the removal of the spleen would present problems at a later date, but according to her - it is a non-issue. 

So, overall a very good appointment.Yes, he does need to follow up with another doctor about some concerns and we are still dealing with the platelet count issue. However, that one little statement makes it a very successful appointment and you can walk away feeling much happier about how things are going. I know Robert did. 

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.

The Importance of Reading the Labels.

A few months back, I wrote about Robert and his low platelet count – the tests and the results.

Well, he was prescribed Prednisone to take for a few months to boost his platelet count. Then, once it gets into the “acceptable range” he will be weaned off the medication and monitored to see if his platelets drop again. So, he has been taking the medicine. But apparently not enough.

When he went to the doctor last week, the doctor was concerned because the count was not as high as it should have been at this point in the treatment. Plus, he was quite surprised that Robert was not feeling any of the real side effects from the meds other than a decreased appetite and a little difficulty sleeping. He hasn’t been dealing with the swollen feet, finger or hands, agitation or nervousness or many other things. The decreased appetite and sleeping problems are also not that bad. Of course, when he commented to Robert that he should be halfway through his second bottle of meds and he is still on the first one, Robert began to suspect something.

Neither one of us are entirely sure where it came from, but for some reason, we both thought he should only be taking 1 tablet a day. Turns out, that isn’t the case. He is supposed to take 8 tablets a day. No wonder he wasn’t feeling that many side effects! That has changed and he is now taking the 8 pills a day as instructed, but it brings up a very important point.

It is very important to read the instructions on medications and make sure you are taking the correct dosage. Too much or not enough will have results different from what is expected. In this case, Robert’s platelet count was not going up nearly as fast as the doctor thought it should and was going to consider some alternate treatments. Instead, we are waiting to see if he responds the way the doctor thought he would when he is taking the correct amount of medication every day.

This is also important for a care-giver. Sometimes, the person you are taking care of may not be taking the right amount. Instead, they take the amount they wish to take. It is up to you to make sure you read all the prescriptions and dosing information to be sure you are giving the correct amount. It could make a huge difference in how the person feels and responds when taking the medication as really instructed.