Making Deals with the Devil - Part II

 Sarah went with Bob to see her neurologist at the Cleveland Clinic last week for what will become a regular twice a year appointment for her now (barring any flareups which would prompt extra visits). Her eye sight is getting better and better, and although still not perfect in her left eye, it is much better than it was even just a couple of weeks ago. She was so excited by this progress that it almost made me cry when she came home to report the good news. To see joy in her face - pure joy - is really gift to our family as the sadness of this disease has weighed heavily on her heart since her diagnosis.

Her neurologist  disagreed with her ophthalmologist's recommendation that we not have her play soccer, and told Bob that Sarah needed to be able to have the freedom to be a child. Because, for her, playing soccer is a part of her childhood he recommended that she continue to play despite the risks involved. So, after talking with her coach, she is now playing soccer again, but she will most likely only be playing defense and goalie to limit her chances of having a mini relapse. From what I understand, if Sarah does not listen to her body, at any time she could have what I will call a mini relapse where her vision could go blurry.If she doesn't take a few days off to allow her body to recover on its own then she will end up back in the hospital. The good news about this is, that unlike her first three relapses where there was nothing we could have done to prevent them, her MS does appear to be moving into remission, so when she begins to have signs of losing her vision as long as she takes care of her body and gives it rest her eyes will be able to correct themselves over the course of a week or so. By playing goalie and defense we will be limiting Sarah's running which will limit her chances of overheating (which is really bad for people with MS) and also because the weather is cooling down even if she plays goalie for an entire half the sun's heat should not be an issue either.

My mom, who has MS also, gave me her copies of a couple of MS newsletters after she was finished reading them. On several of the pages were advertisements for various MS drugs. Each one claiming its own triumphs in what it could do to help ease certain symptoms that people affected with MS suffer from, and each one with its own list of side effects. The kids and I are always amazed when we see a drug commercial on TV because, while the drug in question may help cure you of your specific symptom, the list of side effects is so much more severe than the initial problem itself that we cannot figure out why anyone would take any of these drugs?! That problem, while we didn't understand it before, has become a real issue for us now.  This is why:

One of the things that Sarah's neurologist did recommend, again, was putting her on Avonex. I have an issue with Sarah taking any type of MS drug at this point. I would rather try the whole diet, vitamin D, fish oil supplement route to see if this helps prevent any new lesions from forming. This avenue has been very successful in some MS patients, and I would much rather try this for 6 months first than just injecting Sarah with drugs. Apparently, her doctor did a pretty good job convincing Bob and Sarah that taking Avonex was the best thing for her because when they came home from their visit at the Clinic Sarah was ready to start injecting herself once a week. What Sarah took away from the conversation between the doctor and Bob was the if she does not go on Avonex when she relapses her chances of recovering fully decrease with each relapse, and that eventually she will stop recovering. Since she is petrified of losing her vision she was ready to jump on board with this without giving it a second thought.

So, it was quite ironic that as I was thumbing through the pages of the MS newsletter that my mom had given me (the evening of Sarah's appointment) there was an advertisement for Avonex. This is what I saw and read:

So, basically, I will be giving my daughter a drug, that I am not sure if it will really work, that is not known to be safe or effective in children, that may cause a litany of other problems - most extremely serious. This is what I face, and my husband faces, as the parent of a child with a serious, incurable, disease. Do we, eventually, allow this drug into our daughter's body knowing that it very well could damage her in other ways, just to prevent (maybe) the onslaught of symptoms that may come from this disease? Or, do we say 'no' to drugs like this in order to save her mind, heart, and liver, but have MS ravage her body by taking away her sight, among other things? Will Sarah grow up to resent us for the decisions that we are making for her now? Will she wished that we had chosen differently? Those are the questions that tear at my heart, keep me awake at night, and bring me face to face with the devil trying to make any deal that I can to save my sweet Sarah. I would do just about anything to save her and to not have her hurt in any way, now or in the future.

I was sitting in my parents from yard yesterday watching Sarah play with her 1 year old cousin play. She looked just like an angel, and I know that there are glimpses of heaven right here on earth because I seem in my children, but in Sarah especially. Her beautiful brown wavy hair was flowing down her back, her blue eyes twinkling at the private joke the two girls were sharing, her smile shining from ear to ear, and in that moment all I could think about was the fact that inside her body was disease that was quietly and silently damaging parts of her brain. A disease that, while sitting dormant inside her body right now, will wreak havoc on her life from time to time in no known pattern and without any warning. A disease that sits in her soul and worries her night and day, and I just wanted to scream out loud. I could feel my heart breaking inside of me. I hate Multiple Sclerosis. I hate it with a passion that is unlike anything I have ever felt, and I will make any deal with the devil that I have to with my own soul in order to save Sarah, and to not have her bare the burden of having to choose between living with MS as it presents itself in her life or living symptom free, but with the side effects of drugs like Avonex.