Sarah, The Medical Establishment, and Living

So much to share. Where do I begin? Probably with the most important part - how Sarah is doing...

Sarah is doing well. When she went into the hospital her vision was 20/50 in her right eye and 20/70 in her left eye which is nothing for her. I was almost embarrassed to take her into the ER for vision that good, BUT her neurologist at the Mellen Center told me that we had to take her in last night so we did. She began her steroid infusion at 12:45 am last night and it lasted for an hour, so my girl didn't get to bed until 1:45 am. Anyone who has spent some time in the hospital knows that the sleep is not good, so on top of going to bed late she was poked and prodded a couple of times in the night before she was woken up for good by a resident doctor at 8:30 am. She is in good spirits and is glad that she will only be spending 3 days/2 nights in the hospital. If all goes according to plan she will be released late tomorrow night.

Here are some of my concerns....

Normally, Bob and I always wait to take her in to the hospital. Some days Sarah's vision is better than others, so when she comes to me and tells me she is having a bad day I like to wait it out to see if it will get better on its own. Sarah's vision, before yesterday, was the best its been for a really long time, so I was extremely surprised that she came to me yesterday afternoon concerned about her vision. Dr. Rensel (her Mellen Center neurologist) stressed to Bob and I the importance of calling her on her cell phone the moment something changes in Sarah's vision that is out of the norm. Because I like her and have a good relationship (i.e. I trust what she is saying) with her I didn't hesitate to contact her yesterday afternoon to let her know that Sarah went from having no black spots in either eye and almost clear vision to waking up with tiny black spots in both eyes and blurriness. When speaking on the phone with her some concerns arose that I will be addressing with her at our next appointment.

The first thing of concern to me is that she wants Sarah hospitalized any time her vision deteriorates to 20/50 and beyond. Do you know often her vision is at 20/50? All. The. Time. It is rare that her vision gets to 20/40 or below. I REFUSE to hospitalize her all of the time. I know that we have been doing that thus far, but we haven't known any better. Disease care has a learning curve, and Bob and I are just getting to a point where we have a handle on things and can really question Sarah's treatment. Call me crazy, but something is not working here...Every time my child is taken off of steroids she has an exacerbation (she just finished up her steroids last Friday, so she was steroid free for about 1 week before issues cropped up this time). She cannot be on steroids her whole life, and her body is clearly showing wear and tear from continuous use of steroids (hair loss, cushing's disease). S


o there has to be another solution to helping her. No one wants to try plasmapheresis for some reason (I am about to get to the bottom of that at her next appointment) although there have been studies done that show that doing so helps patients in Sarah's case where the disease (whether MS or NMO) is not affected by steroids, and only comes right back once steroid use is done. Basically, my issue is that what we are currently doing is not an effective method of treatment.

 Dr. Rensel also shared with me yesterday that it takes Imuran (the drug she is on to help treat her NMO) about 3 months to start working in a patient. Sarah began taking Imuran a little over 3 weeks ago (I think), so she still has a while to go before we hit the 3 month mark. Also, I know that when released from the hospital this time she will be on a 12 day taper. To me, this means that before we hit her 3 month mark we may end up back in the hospital again because she will be off of steroids for several weeks while waiting for the Imuran to kick in. On top of that, she may not be on the correct dose of Imuran (although increasing her does has side effects that I am not sure I am ready to deal with), so we may have to "play around" with that until we get her dosage right so that she stops have relapses. (Which as you can guess by now relapse = hospital stay.)

Not being one to shy away from thinking off the beaten patch this is where I am at....

1.) There has to be another treatment besides steroids to help Sarah regain her vision. We live in the United States of America for Godsakes -you cannot tell me that this is the ONLY way to help Sarah regain her vision.

2.) There has to be a point when enough is enough. Sarah is terrified of losing her vision. Petrified. Her biggest concerns are that she won't be able to play soccer and go on hikes and live her life the way that she does now. She does not to be any more different than she already is because of the disease living inside of her. BUT if she is going to go blind (and I am not saying for certain that she will) when do we decide to let nature take its course instead of trying to intervene? All these medicines that we have been pumping into her body almost continuously for the past 9 months have a price. As adults, Bob and I have the ability to see farther out into Sarah's future than she does. Are we better off letting the medical system pump these drugs into her body to give her some semblance of vision that comes and goes on its own whims which will buy her more time to see but will negatively affect her organs and bones down the road? So that not only is she one day blind, but also has osteoporosis and needs to be on an organ transplant list because they are shot from so many steroids? Or is it better to not allow her body to be pumped with these drugs (that are clearly not doing their intended jobs or we wouldn't be needing them so damn often) and save her body from long lasting damage, but at the risk of her vision?

I can honestly say that over these last 9 months I have learned A TON about our medical system, and most of it shocks me to my core. Our medical system is a web of bureaucratic cow poop that very often does not treat a patient effectively. I think that doctors have a lot of knowledge, but that it is not patient specific. What I mean by that is that Bob and I (and as she gets older, Sarah herself) need to be her patient advocates. WE know Sarah best and it is our JOB and DUTY to look out for her best interest and tell her doctors what we will and will not do. To hear their side of WHY they want to chose certain treatments and then to tell them if we think that will work for our child. If something doesn't look right or feel right then it is our job to tell her team of medical professionals that the game plan in changing and WE are going to call the shots based on the medical advice they give us. When you go to a doctor they are only giving you their advice...telling you how they would treat a patient with a certain disease...that is why when someone is diagnosed with a serious disease many people get a second opinion because they want to know what they feel works best for THEM. I think that far too often we look to doctors as demigods that must be obeyed. I realized that doctors are human beings and that they make mistakes and that they are not perfect nor do they have all of the answers. I walked into this whole thing blindly thinking that every doctor I met would know everything about anything I needed help with. That each doctor would provide the kind of care to my daughter that they would to their own child. That each doctor would act honorably and have my family's best interests at heart. THIS IS JUST NOT THE CASE and to think that anymore would be ignorant. This is not to say that I think that the every part of the system is horrid. There have been a few gems (Dr. Locastro and Akron Children's Hospital and, so far, Dr. Rensel) that I couldn't have gotten to the point where I am without them, and to not shine a positive light on their care would be neglectful on my part. I owe a lot of my success in navigating through this web to them - particularly Dr. Locastro who has been on this journey with our family since Day 1.

I am determined now - not scared or angry or sad, but determined to get Sarah the best care that she needs to help her live her best life. I OWE that to her as her mother. I had a dream two nights ago that she died. It scared the shit out of me. In my dream she was given 48 hours to be with us before her heart stopped beating. In my dream we were sitting by a stream - just her and me - and I was apologizing to her for all of the times I failed her as a mother. How I was sorry for being critical and unloving and for ever making her feel bad about herself or less than the absolute pure soul she was. I was telling her how much I loved her. How I hoped that she could feel my love and know that I was so honored that she was my daughter. I remember that Sarah wasn't scared to die. I remember that she told me that she forgave me for all of the wrong I had done to her, and that she knew I loved her. I remember her feeling warm in my dream and she had a light surrounding her.  I can say, hands down, it was the saddest dream of my entire life. It will haunt me everyday for eternity. I woke up yesterday morning with this ache in my heart that is completely indescribable. This dream only solidified that lump that sits in the bottom of my stomach that I feel like my time with her is more finite than I would like to admit. I know that sounds crazy. I do. But I also know that I need to trust my gut even when it makes no sense and I cannot rationally explain why I feel the way I do. Kinda odd that she came to me yesterday afternoon, the day after I had this dream, to tell me she was having issues again.

This only solidifies my excitement for this year. I am so happy that we are homeschooling the kids. I am happy that they have great friends and family who love them with all of their hearts. I am even more excited that we are taking this year to travel and see the places we always said we would go, but never did because we thought we had a thousand tomorrow's. This is going to be a good year - I can feel it. I am going to love every moment of it and treasure it for you never really know how long you have....I know that it sounds so cliche, but I want to make each day count. It doesn't matter if we are having a day at home or a day doing something fun and exciting. I want to be there for it all and look back and never have any regrets.

I love my family with all of my heart. And even though this last year has been pure hell I have never felt more alive nor more appreciative of the things that REALLY matter. Life is about the highs and the lows. It is about feeling it all - taking it all in and then letting it go. It is a gift. One that I will never, ever take for granted again.