Update

Good news and Bad news. I guess thats how life goes, right?

Let's start with the Good news. Aaron had his MRI two weeks ago and the results showed no active lesions or new lesions on his brain! So maybe, just maybe the medicine is finally kicking in and doing its job!

Now, the bad news. Aaron received a call from the Doctor's office 3 weeks ago with the news that his JCV levels are getting to high. I guess you can't have your blood levels any higher than 1.5 and he went from a .80 to a 1.4 in a short amount of time. He is suppose to go in Friday and have his blood work done again to see, if this increase has continued. If it has. Then sadly, they will pull him from the drug that he is on now. The other bad news is, there really isn't much else out there that will help Aaron's MS. The stuff he is on, is strongest and best. So we can only hope that his blood levels have dropped and that he can continue on this drug until other options are available. We hear roomer that a new Drug should be out by the Fall of 2016. So either way, fingers crossed he can start trying that drug then, if we can make insurance and others things work out. 

It just doesn't end. Sometimes I think it will, but lately I feel like it just doesn't end. I hate people asking me "how is Aaron" I never know how to answer. Most the time, I say good. Because he is good, he is a positive, hard working and pretty happy person. But, he has a horrible sickness, that affects him daily. He's had some really good positive days lately, but he has really rough days too. I hate bogging people down with bad news too. So do I just fib? I mean come on, most people really don't want to hear it anyway, right? It's a hard spot sometimes to be. 

On a more happier note though. I have a fun announcement. My brother Jon and I training and  raising money for National MS Society by running the Boston 2016 Marathon! How cool is that? Doing the thing I love most, to help fight the disease that plagues the man I love most. I have a Donation page with our story and why I'm running the race. Check it out:

http://main.nationalmssociety.org/site/TR/Special/MAMGeneralEvents?px=14731319&pg=personal&fr_id=27191

I truly hope that someday, in the very near future we will discover cure. For now, I'm just praying the find more effective and safer medications for MS people to be on. 

Below is a picture of my friends and I running a few Saturdays back. My one friend Cheryl ran a 50K which is 31 miles to raise money for a friend of hers who has MS and is going to try a new stem cell treatment that is still under trial. They think it could actually be a cure to MS. I had to run with her for some of it to support her because of what she was running it for. I only hope that maybe, just maybe this run did raise money toward finding a cure. I hope to do the same with my race in April.

So here's to racing for a cure for MS!

It all starts with a decision to begin. Here was our beginning 

of the run, our starting line...

Becky, Cheryl, Me, and Deb

Its been awhile.

It's been awhile. I haven't update for many reasons, but mainly because life is crazy at our house. With the birth of our baby in Late March, we now have 4 kids under 5, plus I teach preschool and try to keep up with life. 

So here's the latest. We've had a few people ask lately, so I figured I'd write it down for those who may still check this blog.

Aaron's a champ! You'd never know he was sick if you didn't already know. He works hard, and is trying really hard to keep his head in the game. But, unfortunately he doesn't feel like we wish he could. My last blog post in May I talked about the new drug he was starting. He was doing pretty good this summer and we felt a glimmer of hope for a bit that maybe this was the answer to this 2 year journey of finding a medication to slow the progress of his MS. But, we've had some bumps again and wonder if this medication will do what it needs. I can't remember all thats gone on. But really we've had a few times where he felt like he was back to first times he was diagnosed. Numbness, fogginess in his mind, exhaustion and just plain not feeling good. A few weeks ago he went in for a dose of steroids to help the numbness subside. It seemed to do the trick for that. As far as everything else. Its about the same. 

Sleep has become vital, and he is finally allowing himself to sleep in a little longer in the mornings. Our biggest problem is if he gets woken up during the night, then he can't go back to sleep! Which then affects him the next day and starts a domino effect for days after. Sadly, we've again, got 4 kids under 5. It is a rare occasion to not have at least 1 wake us up in the night, if not more. I try to get to the kids before he wakes up, but some nights, I'm so exhausted, I don't hear them first and Aaron gets woken up. I then feel horrible, because then he doesn't get back to sleep. WE are trying some sleep meds, but if he takes them too late in the early morning, he has a hard time getting up. So our hands are tied at this time. I'm tempted to make him sleep in the basement, but he's not quite to the point he will do it yet. Ugh! Tricky stuff. Hopefully soon, the baby will at least sleep through the night and we will have more nights than not, where no one wakes up. 

Diet. WE are struggling with this and direction to go. We know food has a huge impact on him. But, its so hard to know the direction. I'm struggling with prepping, cooking and buying the things that will keep him healthy. I'm feeling so overwhelmed with everything else in my life, that I'm lacking in the supportive cooking wife section. If anyone has suggestions... I'd love to hear them! He needs to do something. We pretty much know what to do, but its the money, time, and energy to get there that makes it hard. 

There are a few other things he is facing right now, that are definitely too private to discuss on the blog. But, every prayer is welcome. 

For the most part. He is a hard working, happy and optimistic person. I feel that we will figure this all out and will find MS to be more of a nuisance than something to fear. I hope at least. For now, we keep testing what works and doesn't and hopefully gain some ground in the future. 

Thanks for reading. 

It begins again...

Monday was the day we went back to the Doctors to meet with him and begin Aaron's new drug. I picked him up about 10 minutes before the appointment and we headed over. Once in the office Aaron had to fill out a sheet that I guess you fill out every time you come to receive the drug. It has questions about your health, how you've felt and any new noticeable symptoms. After waiting for a bit, a nurse came to take Aaron to get his vitals and show him a few things. I was still feeding Easton, so I just stayed in the lobby. When Aaron came out, he looked pretty melancholy. The nurse showed us back to the doctors room. Once there, we had a minute to chat alone. Aaron was pretty emotional and seemed just overwhelmed with everything. I felt awful and wished I knew how to comfort him at that moment. The doctor finally came in and began to look over all his results. Before they administer the drug the first time, they check the risk factors that are involved with the chances of the JCV virus actually causing PML. The doctor started with the blood work. I'm not sure what it was measuring, I think with how active or something with the JCV virus in the blood. People whose blood reads 1.5 or higher, can not receive the drug. Aaron is borderline with a 1.3. So he can still have the drug, but is on the border, of course. We discussed a few things with the doctor and learned some new things. 

1. The other 4 risk factors are as follows: -

-The patients weight needs to be higher than 150. Aaron weighs 155. Time to fatten that boy up! 

-If you are on the drug for longer than 2 years.

-If you have had drugs before that suppressed the immune system, like chemo.

-If you test positive for the JCV virus. Which Aaron does.

3/5 of the risk factors, not what we wanted to hear. I think this is really what hit Aaron so hard.

2. We also learned that this drug is the last resort drug for MS at this time. They usually make patients take several other drugs before they prescribe this drug. Its very aggressive and works good. But with the risks involved, I think they try to see if other drugs are just as effective first. Since Aaron's MS continued to progress with his last drug and that drug being the other most aggressive drug out at this time, they know that putting him on any other drug would be fruitless. So, he was prescribed this drug. There really is no other option. Either he takes the drug or allows his MS to take its course. So we realized that really this is the direction we need to go. The hopes are that the middle or end of next year we will have a new option that is coming out. It is a new aggressive MS drug that we can switch to. Hopefully with less risk factors than the drug Aaron just started to take. 

3. We learned that Aaron has an active lesion at this time. The doctors hope is that this new medicine will get that to calm down and stop any more attacks on his brain. 

4. This drug weakens the immune system. Aaron will be very susceptible to sickness. We must not let him get sick the week before or of when he is to receive his next round of the drug. If he is sick they will not give him the drug until he is better. Because the drug weakens the immune system the virus or whatever is causing him to be sick can get worse. I guess there is a total 6 week window to administer the drug again for it to continue to be effective. After 4 weeks after the drug is given it is still strong in the body, after 5 weeks its still there slightly, but by 6 weeks its gone. So they need to get the drug to the individual before week 6. Anyways, he needs to stay healthy and avoid sick people. Looking at our house, you can only imagine how that will be very hard to avoid. Oh well. Lots of had washing, and hand sanitizer for us. Guess what Aaron's getting for father's day. 

That's all I can remember right now. But we learned a lot and have learned that what we need to do to get this boy healthy once again. 

After meeting with the doctor we headed back to the infusion room. There were 3 rooms. A quiet room, a dark room and the bright room. Luckily, the bright room with lots of windows is where they put us. We sat down and the cute nurses there came and greeted us. They were in love with little Easton. Everyone who saw him were dying. I think it made Aaron proud. We were then asked to see pics of all our kids. One nurse couldn't stop peeking in on Easton. It was cute. They finally got the drug going and we started to chat with the other lady in the room who was there. She was older and told us she had had MS for over 30 years! She looked great. She has had her ups and downs, but said this drug has really helped her. In fact, it helped her get out of the wheelchair. Anyways we talked with her for almost the entire 2 hours. She held Easton while I got Aaron lunch and she really helped Aaron's spirits to improve. Another lady came in at the end. She was upbeat and positive to. They both really shed some good light on this journey we are on. No, it won't be easy, but staying positive and making yourself focus on the good helps. 

So Aaron did really well. He had no allergic reactions and has been doing good this week so far. He goes back in a month. I'll go with him again and just make sure all goes well. 

We will keep you posted on how things go. We are hoping and praying that all will go well from here on out. Here's to a new beginning that will end much better this time! 

"Disastrous"

When you here those words from your doctor, you think... hmmmm this is not good.

We went in for our MRI follow up appointment this week. We've been anxious since the Doctors office called us back after the MRI suggestion Aaron get more solemedrol treatments in and have a visit with the doctor soon.

Back to square 1is a good way to sum up all that we discovered. The MRI showed a very large lesion on the brain and then another at different spot. The many exaberations that Aaron's has had since January are the evidence of whats been going on in his head. Not good. Proving the disease has found a way past the medication and is not working. In the words of his Doctor "Disastrous!" The obviously it didn't do as we had hoped and had quite the opposite effect.

So what does this all mean? A new start and search for help for Aaron.

The Doctor suggested, well pretty much said our next step is a drug called Tysabri. Very effective and has been around for about 10 years. It is a once a month infusion and doesn't have too many side effects. The problem, as we are finding all drugs have, is that it is connected to a rare brain infection that can kill you. Ya, I shifted in my seat when I heard that one. It's rare, but not rare enough that  they watch you like a hawk to make sure you show no signs of this brain virus. Not what I wanted to hear. So what is this virus?

There is a virus called the JCV virus, named after a man who died from it. Nice. Anyways, we are all exposed to it and probably half the population has it. It is food bourne. It sits and hangs out in our kidneys. It does us no harm, until we have a weakened immune system. So people who have chemo, and other disease where the medication weakens that immune system increase their chances for problems. The JCV virus can end up in an Tysabri patients brain and start doing its damage when the immune system is weak. Tysabri is a drug that weakens the immune system, it does it so well that it allows for the MS to not hurt the brain, but increases the chance of the JCV virus to do its damage. The JCV virus does have to mutate and travel to the brain first, for it to cause brain damage. But if it does, and once this virus is in the brain it then causes the brain infection PML. This is not good. It has no cure and about 25% of those who have it die. Those who don't are disabled and very sick. There is not cure to PML.

So with this new knowledge I started to ask a few questions. What types of people have generally got PML. The doctor said it was found most often in the european nations. Why? Because people there were skinny. We both looked at Aaron. My thought... I need to fatten that boy up. We went ahead and looked at his blood tests and guess what!? Aaron does have the virus, like half the population, but he does have it hanging out somewhere in him. Ready to mutate and travel to his brain. I know I'm being silly, but you sit and listen to a doctor say that a drug he is putting your sweetheart on is suppose to help one thing, but has a risk of killing him! You'd be a little nervous too.

Anyways, he should be fine and we are going to go ahead and start the drug here in the next few weeks once we get approved by insurance and hopefully get on some financial help plans to pay for it. The drug itself $5500 a month! Of course we won't pay that, but it still would be killer if we didn't get financial help. SO fingers crossed!!!

I did ask the Doctor why the first drug Tecfidera didn't work. I asked him if Aaron maybe has a more aggressive MS. His response was of course not what we wanted to hear. It looks as though at this point it is a lot more aggressive than we thought. Which is more typical in a male with MS. More women have MS, but men who have it, see a more aggressive side to it, since they don't have the hormones like women. But, we can treat it he thinks with these typical medications. If not, then we will jump on something more intense. We pray we never get there. It didn't sound pleasant.

It was hard to sit there holding our 2 week old baby and listening to the doctor say, we obvisouly need to get you better. You've go this young family and a whole future ahead. Why was that hard to hear? Because for a year and half I thought we were already getting him better. Here we sit and he just told us that the medication he was just on was DISASTROUS and not doing what we had hoped.

So onto a new chapter. There is great hope that this drug will do what we need. The first 6 months are vital in watching how Aaron responds to the drug and treatment style. We have to watch for allergic reactions, PML signs and side effects. I will go to his first treatment, so that I can get educated on what to look for and how to keep him safe.

We just hope and pray this is what we are looking for. That Aaron will be healthy finally and we can move away from the fear of MS taking over our lives. As his doctor said we want to make MS not a disease that will disable, but just a pain in the butt every once in awhile. SO here's to a pain in the butt.

MS Awareness Week

This is National MS awareness week. Not that most people even are aware of that or know what MS is. But for those of us effected by it, I suppose it has a lot of meaning in it. I decided I would take this week to become better acquainted with Aaron's disease. Its been on my mind a lot lately, mainly due to his poor health and the new challenges ahead. But also, because I'm frustrated that Im not doing more to help Aaron's health to be better.

It can be overwhelming at times, to feel a responsibility to help your husband have good healthy habits and cook good foods for him. I feel we are generally very healthy people and have always been. But, we've really cut down and a lot out these past few years. Still I feel the pressure that it isn't enough. I've had two very close friends tell me different paths we should take as far as food goes. One pretty much told me a cure would come if we stopped having a certain type of food in his diet, another said that if we cut everything out, with exception to those things that naturally come from the earth that we would see him obliviate all bad symptoms. Though I do not disagree that what we eat truly impacts our quality of life, I'm frustrated that we continued to get bombarded by people telling us what to do, because they've witnessed a situation where their food choice changed the health of someone.

In one instance a friend said because of their family members diet change, they were "cured" of an undiagnosed MS. They had some symptoms, but it was obvious to me that it wasn't MS, but in her mind that was the answer. It kind of came off as, Hey! if Aaron would only get healthy and eat right, everything would be ok. You guys wouldn't have this disease anymore. Its pretty much your fault where he is and if you don't change, then its your fault where he is headed. I'm not sure if thats ever how anyone would ever put it or say it, but it feels this way. Of course, if I knew there was a simple answer like eliminating a certain food that would cure him, we'd do it. But it doesn't, they've proved it in studies and most MS people we talk to are all over the range of diets and lifestyle, yet they all continue on the road with the disease. Yes, again, it can eliminate nasty symptoms and help Aaron healthy to fit the disease more aggressively. But, its not the cure.

So here's Aaron anyways, who is super healthy. Very healthy. In fact I used to tease him that he needed to enjoy life a little more and eat a less healthy things. But, I've started the research. So I can truly understand and feel that what I feed and give my husband isn't truly killing him. He has started to decrease and eliminate most dairy and gluten products from his diet. It hasn't been long enough for us to see any change. As I have read, and the more I read, really what we need to decrease and change is more of the salt intake and processed/fast foods. We really don't eat fake, processed dinners or foods. In fact I live by the rule of shopping the premeter of the store. I do buy crackers, cereal, bread and fruit snacks for the kids, but Aaron rarely eats anything like that, unless its organic type of snack with a few ingredients. We eat out rarely and when we do, we share a meal and keep away from fast food places like Mcdonalds.  We will continue to experiment and find what helps him feel best. Everything that I read takes me back to what his MS doctor said about whole foods, plus high fibrous whole grains, oils, nuts and high in fatty omegas. We are not fish people, but we can give him that through vitamins and other foods. I just need to continue to research and learn more.

Ahhh, my venting session is done. I really want what's best for Aaron and I will truly change or do whatever we need to do. I just wish people around us would stop judging, critizing or telling us what we should do. I wish there was a book that told us exactly what to do. There isn't. MS effects every person differently, everyone is treated differently and each person responds different. So forward we go. I do want to put it out there we don't not want to hear from people what has helped them, we just don't want to be told that if we'd only change this or that he'd be cured. Be sensitive is all. In the end Aaron's a good guy who really takes everything that is said to him lightly. I'm the one who thinks about it too much. AS you can tell.

Anyways, Aaron had a big dose of steroids yesterday. The nurse at the clinic didn't like to hear he had two new lesions. Not a good sign at all. I guess we will know more in April. AS for this week, we are going to continue to learn and read more about it. I want a healthy and happy husband in the future, so I feel what I do and learn now could really help that to happen.

Much Love. Thanks for reading my ventings. Jamie

Next Step

Well we finally got a call back from the Doctor's office. They've bumped Aaron's appointment from the end of May to the beginning of April. Which means we hopefully will get some answers a little bit sooner than we were thinking, which is great news! They also told Aaron to go in and get one more dose of steroids to keep him going until then. We are hoping this will help. Once we know more  we will update the blog. Until then. Prayers we can receive some guidance on the next step, that we can come to understand this illness better and really find a direction in how to make Aaron feel better. We've started eating a lot healthier once again and trying to get Aaron more sleep. It seems to help a little and we hope we can continue.

Thanks for reading and for your concern! It truly means a lot to us. I do want to let you all know that overall, life is good!!! I seem to come off negative in my posts, mainly because its the only time I really talk about all of this or share what's going on with others. But, we are HAPPY. We feel blessed Aaron is as healthy as he is, that he can work and doesn't have any symptoms at the time the prevent him from a regular everyday life.

Results

We got Aaron's MRI results back this week. We were excited at first, because they gave us his spine results first and everything looked awesome. Then we realized we didn't have the brain results and had to wait a few more days. Feeling positive after reading the spine results, we were a little disappointed with the brain. We of course don't know much of the medical jargin, so we don't completely understand everything that was reported.  We will have to wait until we officially meet with his doctor, but we do know that when it says two new areas that have been effected its not good news. We don't know exactly how bad or what damage happened, but we do know that some has happened. So our long streak of healthy hasn't quite continued, and its back to the doctor to figure out what the next step is.

Aaron's felt fairly well up until January. But it seems, since the new year, we've had problem after problem. From headaches, to lack of sleep, to weird rash break outs, to awful red flare ups and lots of numbness. Nothing that limits him luckily from work or most things he is required in his life, but it sure doesn't make easy. He just doesn't feel good most the time, and that is just plain frustrating and hard. Think about the times you have a headache or feel sick. Now think how relieving it is when thats over and you no longer have it and can continue on with life feeling good. Now picture if it never went away and you always live with some kind of pain or problem! That's Aaron. Yet, he really is optimistic and continues on with his life as if nothing is wrong. It just gets a little harder when its more intense like it has been.

We look forward to a visit with the Dr. and hope that we can figure out how to get him back to that healthier stage. Until then, we've decided to make a few changes to diet and lifestyle to hopefully get him feeling a little better. WE notice that certain foods tend to make him feel not 100% which is probably true for every person. But, they tend to have a greater effect on him. We hope this will help with some of the day to day problems he faces.

We will keep you posted on thing when we know more.