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I haven’t done an update on Zach’s multiple sclerosis situation since his first infusion in February. If you want to get caught up on everything that’s been going on since September you can read all of my posts on the topic here 🙂
Zach is currently on a 28 day infusion called Tysabri. He travels to Atlanta every 28 days. We have a good system down where he has his appointment early in the morning so he goes to Atlanta the night prior then is able to beat traffic on his way home (or to another area if he needs to work somewhere near Atlanta). For the first two infusions he stayed with some wonderful blog-turned-real-life friends Ruth and Nathan. For the others he’s been staying with a friend of mine from childhood who also played football with Zach in college (shout out to Scott and Fontana!). We are SO blessed by so many friends who have offered up their homes to him and we are thankful to have options available which we may be utilizing 😉
I only went with him on the first infusion. He understood why I wanted to be there but has been pretty hardcore against me coming to any other appointments. He doesn’t want his disease to inconvenience anyone (which is SO DUMB hello I’m his WIFE!) so I try to be cool about it 😉
When we went to his first infusion it was a little bothersome to see some of the other patients also getting infused at the same time as Zach was. His dr had said the goal of his treatment plan was to never have another episode again and we left the appointment unsure if they meant that as like some pipe dream goal or an actual legit achievable one. Since Zach went to his second visit solo he thought it’d be the right time to ask that question. Zach and I are both pretty realistic about things. We want to KNOW what to expect. And we want to have realistic ideas about what our future will look like.
He asked his dr about this and she said that when people come to Shepherd and begin treatment with them that it “freezes time.” Once you have progressed with MS it doesn’t go back so a LOT of people who have it either don’t catch it early or have had it longer than meds have been available for it. Or haven’t been on an aggressive plan of treatment. Zach is a RARE situation. One episode? So young and healthy? Catching it so quickly? Starting treatment so soon? It’s a very, very uncommon situation in the world of MS (which we are SO THANKFUL!).
She basically said that people he may see around the building and such were at that stage in their prognosis when they came to Shepherd. She said that the goal of no more episodes isn’t some far off dream. It’s a REALITY. She isn’t just hoping he’ll never have another one, she’s confident he won’t.
I can’t even begin to describe how much JOY and HOPE this gives me for Zach’s future. I love looking at him and thinking “he’s going to stay just like this.” He’s perfect as is and I’m so grateful that his MS diagnosis won’t change any of that! Of course we know that there is always a chance of another episode, and a chance of a change in diagnosis in the future. But we are walking in full faith of continued good health for him!
He had an MRI at the second appointment and reviewed it at the third. We did ask if having MRIs often can cause damage and were told no and that CT scans are the “bad thing” but that MRIs are fine. His MRI came back great! I wasn’t at the appointment and was pretty annoyed with Zach for not asking exactly what was meant by “great” like did his spots look different? Smaller? Or does “great” just mean no change? Zach felt like her saying “great” was good enough for him so we have to just roll with that but I’m hoping for the next MRI he’ll ask a little more info about the results 😉
Along with a brain MRI they did a spinal MRI. His dr said they don’t do spinal taps anymore (ugh totally wish we hadn’t gone through that nightmare) and they do spinal MRI’s instead. The results of that MRI showed NO DISEASE on his spine! Praise the Lord! People with MS have spots on their brain, spine, or both and we’re def thankful that his is contained to his brain rather than both!
They will do MRI’s pretty frequently to closely monitor for any changes. Tysabri is actually a sister drug to the infusion Mrs Charlotte takes which is so interesting! Mrs Charlotte’s body will actually fight against drugs and Zach’s dr said that was the only concern for him to have with using the Tysabri. We just had to wait and see if his body would be like his mom’s and fight the drug or not. So far though, we’re good!
The only other question he has asked was if there are any medicines he needs to avoid or be wary of since he gets these infusions and she just said to not get any vaccines without first discussing with them. Which makes sense! I also assume he can’t donate blood?
Several sweet friends sent me links about the BIG news of the new FDA approved drug for the treatment of MS. And we are SO excited as well! It’s actually the drug that Zach will be switching to! Tysabri is every 28 days and is a great option for him but because he’s predisposed to PML (don’t google it, it’s scary) he can’t stay on Tysabri for very long. He’s fine for 18 months but can’t continue it past that point due to the PML risk.
How much of a HUGE blessing is it that this new drug is on the market at just the right timing for him?!?!? Thank you LORD! The new infusion is Ocrevus and it’s actually been used for many, many years just wasn’t FDA approved. In it’s history there hasn’t ever been a case of PML! Zach will switch over to this in a couple months. At that time he’ll have to get two infusions within 2 weeks and then will just get them every 6 months. Which is great!!! I figure we can make an Atlanta date night every 6 months and I can go with him 🙂
His infusions are about $15,000 a month. Yup. That’s a LOT. We have Medishare which is wonderful and Zach worked with the Tysabri company about helping our costs. I felt GREAT about everything and how it all worked out until a couple weeks ago. Medishare called me and mentioned that they only cover infusions for 12 months. As in, after this year they won’t cover any of the expenses related to his infusions. I instantly got super upset and told them I just needed to go and they needed to talk to my husband about it. I simply can’t handle that stress or thinking and worrying about it.
Zach spoke with them and because he has the most mild form of MS they are not willing/able to make an exception to their rule on covering the costs of the infusions. I’m basically trying not to freak out about it. Obviously we can’t possibly begin to afford $15,000 a month. And who knows what the cost will be for the new infusions! I’m so thankful Zach is the type of man that will handle things as needed like this. I’m usually ALL about knowing every detail of everything and typically handle ALL the financial stuff in our home (aside from actually making the money haha!). But with this? I just can’t. I feel like an old school housewife that is just kinda in the dark about it. But he said between talking with the drug company and with Shepherd that it’ll all be okay. So I have to trust that.
BUT I won’t feel like it’s ALL really and truly okay until April of 2018 when our 1 year with medishare is up and when we will see how it all really pans out. I’m shocked (and super disappointed) that Medishare wouldn’t make any exception for him. It’s not like he’s getting these infusions for fun! Or like 1 year is even a drop in the bucket on the number of years he’ll be getting them. This is for LIFE.
Zach works so, so hard to provide for our family and I know he’d be beside himself if his treatment plan were to cause us any financial burden. I don’t EVER want him to be tempted to stop treatment and never want money to come in the way of his health. So I’m just praying super hard that the drug company has a good solid program that we’re eligible for and that it all works out 🙂
We are just really starting summer but the heat has been in full force for awhile now. We’ve been nervous/interested/anxious to see how Zach will do in the heat. Heat is a BIG thing when it comes to most MS patients. It can cause episode-like reactions and patients tend to be very sensitive to heat (even just a 1 degree rise in temperature can be an issue). I’m not counting chickens or anything but we’ve been in some pretty hot weather and, so far, it hasn’t seemed to be any issue for Zach. I’ve read that some people are actually more sensitive to cold and that the heat is comfortable for them so maybe we will luck out and Zach will be in that category!
He’s being very careful in the heat and using lots of cooling towels and staying super hydrated etc. Hopefully his preventative efforts continue to pay off!
If you had told me a few years ago that one day our family would be facing a lifelong disease and had asked me how I’d handle it…I probably would have said “research like crazy.” I have always been big on research. Knowledge is power. Etc. But with MS each and every person is different. In talking with others and doing some research, I got SO freaked out. And you simply can’t compare a situation like Zach’s to situations of people who have had MS prior to that last couple of years. Treatment has changed SO MUCH and it’s come SO FAR just recently!
I joined an official MS group on Facebook and read some of the articles and such they post as they are from the MS association. But other than that, I haven’t done any research since having Zach’s official diagnosis. Instead we’re basing our knowledge off of his team of doctors who are located at one of THE top treatment centers for MS in the world. We trust them and their expertise and their insight. We have info from the infusions and read through all of that as well as any documents his dr gives us, but otherwise we’re just living life.
I don’t look at Zach ANY differently than I did prior to September. He’s just Zach. Neither he or I ever really even think about him having MS until the kids pray “for daddy’s brain” or someone asks us. Which I appreciate people asking and caring about our family! It’s just really the only time we even think about it. I know Zach doesn’t want to be “Zach Parker with MS” he just wants to be “Zach Parker.” And I think people really will just forget he even has it. I told him if I’d known that this would be how it all panned out I probably wouldn’t have told as many people (although who knows if it all would have worked out this way if we hadn’t had SUCH an army of prayer warriors behind us!!!). Really and truly nothing about him is any different and, most likely, nothing about him will be any different in the future either!
I think a lot about how many ways God has blessed us in this situation. Anytime someone does ask about how Zach is doing I instantly start talking about the ways we’re so blessed. Which may sound crazy to some. “Yup my 32 year old husband got diagnosed with multiple sclerosis and we are so blessed!” But it’s SO TRUE. We are blessed beyond measure. We were blessed to have so many doctors surrounding us who caught everything so quickly. We are blessed to live so close to such an amazing treatment center. We are blessed that he’s been diagnosed with the most mild form of the disease. We are blessed with an aggressive treatment plan that will prevent future episodes from occurring. We are blessed with a new infusion just at the perfect timing for our needs. And we are blessed with such an incredible support system praying for us and with us through it all!