Thursday, December 29, 2016

Zach's Spinal Tap Results

If you aren't up to speed on everything that has been going on with Zach's health then you may want to read these posts to get caught up: onetwo and three.

I'm not even going to attempt to put some ultra positive spin on the past 6 weeks since we got the news of Zach's potential MS diagnosis. It's been rougher than rough. I had a really hard time thinking about our future. Zach and I LOVE making goals and plans for the future and thinking about how different all of that may look now really rocked me to my core. I really held tightly onto this article I found. I stopped any other research and decided that I was only going to focus on that. I couldn't think about him having a more advanced form of MS and when I would think about it it'd be hard to breathe. We already got the "worst news possible" so my prayer was that we'd face the best case scenario within our "worst case" news. 

There are times in life where we all face things that require us to be selfish. You have a new baby, and that consumes you for awhile. You can only focus on your immediate family and their needs. It's times like that (and times like we've been facing) where you really notice who in your life steps up or steps out. I'm so overwhelmingly thankful for the friends who stuck by me in my time of being a "debbie downer" and who were supportive when I was upset, listened when I needed to vent, and never made me feel silly for the emotions I've felt. 

I know this is my blog so yall only really ever hear my perspective on things and my feelings and how I cope. If Zach were to be writing this he'd say he's fine. He didn't get upset the day we found out. He didn't ever have a moment of breakdown. Never shed a tear. He's annoyingly optimistic ;) He says whatever is is what it is and we'll face it. Sometimes being an over-thinker is such a curse right?!?!

I did go ahead and start gathering up healthier versions of the foods Zach eats most often. He started making smoothies for breakfast and using natural peanut butter, organic jelly, and organic bread for lunches. I roasted a chicken and shredded the meat for lunch meat and made chicken broth to add nutrients to vegetables. I'm slowly working on incorporating healthier meals into our family routine. We went back to adding vitamin d into everyone's waters. Zach started a more steady work out plan (focusing on strengthening his back mostly). We started making smaller changes and tried not to let ourselves be overwhelmed by trying to do too much at once. My goal with food is to get ZACH'S as healthy as possible then start working on that filtering down to the rest of the family. I know it's important for the kids as they are at a higher risk for all of this in their futures, but I also know it's a one step at a time situation and Zach's needs come first! 

The next step for Zach in all of this was to get a spinal tap done. This is a procedure where they remove fluid from the spine and use it to do tests. It, along with the MRI with contrast, is one of the main ways MS is diagnosed. Some people will only have MS show up in the MRI, some only the spinal, some both and some neither. Basically MS is all over the place and super tough to nail down a for sure diagnosis. My prayer was that the spinal tap was clear. I figured that was the best option so it's what I was hoping for :)


He had the spinal tap done on Friday Dec 9th (Sidenote and something I'll discuss later but that same day I had to go into the dr b/c my skin infection in my face from over the summer, "face gate," was BACK). We were told he'd need to lay in bed all that day but would be FINE the following day. So we planned on heading out for our yearly little Christmas getaway but then Zach was one of the 10% of people who have a rough side effect of the spinal tap. He got what they call a "spinal tap headache." I wish there was a better term for it because headache sounds mild compared to what this experience was like for him. He literally couldn't stand without TONS of pain. It was so, so hard to see him like that! 

I ended up driving to Savannah (he had hopes that resting on the drive would make him fine once we arrived). That drive was very, very difficult for me. I know this may sound silly but Zach and I have very defined gender roles in our relationship. Me loading the car with our stuff? Me driving? It was something that never ever happens and having him literally laying completely flat beside me just really caused me to struggle. People have said that with MS you can do everything you want to do, you just have to do it differently. In that moment of driving I kept thinking about our future and what it could possibly look like and it was overwhelming for me. I don't want to do things differently! I cried for a good 45 min solid which really upset Zach. It was one of only two truly rough moments I've had during this six week period but seeing him in that pain and in that state just broke me. It was ROUGH. For him, for me, for us. 

In situations like these you get all kinds of comments from people. Some helpful, some not-so-helpful. I always try to be understanding and just appreciative of those who reach out. I know it's an AWKWARD thing to say something and I never want to discourage someone from doing so! However, the whole "God is doing this so you will learn a lesson" thing is one of those annoying comments. God is GOOD. My belief is that he allows us to have struggles and trials and through those trials we can grow but he doesn't make bad things happen in our lives in order to teach us some lesson. That's just not how God operates. All of this happening has been hard and I zero percent put ANY blame on GOD for it! Instead I'm thankful He's here for us in it and that He does provide so many blessings in the storm. And yes, many lessons are already being learned. 

Over the past few years I've really noticed God helping me learn to be more flexible. I've always been a planner and used to (like pre-Christianity used to) really struggle with getting SUPER upset when things didn't go according to plan. That's an area I've really grown a lot in and I felt like my learning to be more flexible was because God had the adoption plan for us and, whew, you gotta be super flexible when adopting! But now I see that maybe even the adoption has been another "learn to be flexible" opportunity to prepare me for life with MS. Because it's completely and totally unpredictable. When Zach wasn't feeling 100% the morning we were set to leave for our trip I told him I'd rather stay home. And the lesson in that weekend for us both was that in the future his health comes FIRST. We can't have fun if he's hurting! And when MS episodes happen it doesn't matter WHAT we have planned or what we have going on. Life needs to STOP and his needs need to be met! Top priority! SO even though the weekend was sucky, it was a good lesson for us for down the road. 

We ended up unable to do our plan of shopping and instead just went to the house (a sweet Aflac buddy let us stay at his place) and watched How I Met Your Mother and went to bed. He was still in just as rough of shape the next day so I drove us home. He was able to go to the hospital that Monday and had a blood patch procedure done. The spinal tap headache is from leaking spinal fluid so they used Zach's blood to patch the spot. He again had to spend that day also resting to recover.

(hey, at least we had cake pops!)

Then two days later he was hit with the pain AGAIN. We were worried he'd need another blood patch but he ended up recovering from that on his own and has been fine since (praise the LORD because that was so tough!). Experiencing ALL of that wasn't even part of him having MS! It was so frustrating for us b/c it was like he's going through all this just to even KNOW if he has this debilitating disease or not! It was hard to see him struggle so much and when that headache came back was the closest I've seen him to a breakdown. He just wanted to provide for our family and having to lay in a bed all day makes that impossible. We are so, so thankful he recovered on his own and didn't need the third procedure!

We went this past Tuesday (Dec 27th) for the spinal tap results. I'm not typically superstitious but for this appointment I brought a different cup of my water, had us sit in a different waiting area, and felt better that we were put in a different room to see the dr (both of the previous, negative, appointments have been in the same stinking room!). 

The dr came in and was quick to say that he had mostly good news with a little bit of bad news. I guess that's better than the last two times where he busted in and just immediately told us bad news!

Zach's spinal tap results shows a flag for the myelin basic protein. His is high at 1.3 ng/mL. Y'all. I have no clue what that means at all (and google doesn't help either haha). But the dr said that normal is 1.2. I don't know if his being 1.3 is a big deal because you'd think that 0.1 difference wouldn't matter all that much? But I guess it does because it's considered high and flagged?

He said that it was the ONLY flag in his results. That every other finding in his spinal fluid was normal. I have a copy of the records and don't understand any of it but see lots of stars he put along the sides meaning it's GOOD news. 

He said in order to diagnose MS from the spinal tap findings that they need 3 of the things they tested for to be flagged and Zach only had one. I knew, from my little research about it, that the spinal tap isn't always reliable because MS doesn't always show in it and if the patient isn't in an active time of relapse then things can be fine that would not be okay if during relapse. So while we can't get super mega crunk about the results of the spinal tap...I'll still totally gladly take only ONE flag rather than several!

I will go ahead and talk a little about our dr here. He's AWESOME. But he talks extremely fast (I can now relate better to all of those who say I talk fast haha) and is SO smart that he's spewing off medical terms left and right which are tough to follow. He's been really open with us about how he's not an expert on MS (which I fully appreciate) so I didn't ask him a whole lot of questions. Since we are hoping to visit Shepherd Center asap I am saving most of my questions for them since they ARE the experts in the field. I will also have WAY more peace of mind once we meet with them and hear their thoughts on Zach's case. 

He said we def need to still get there as quickly as we can and that he will work with them to make things easier on us (to avoid having to drive to Atlanta all the time) and he will do whatever they say is best (which, hello, that's a HUGE thing right?!? So awesome). He said not to be discouraged if they tell us not to take any medicine at this point. He said it's common to do MRI's every 6-12 months to check progression before doing any medication. We are in prayer that they WILL get Zach rolling on some sort of medicine/treatment plan as our goal is to be as aggressive as possible in all of this and the research I've read has shown early use of meds can make a huge difference!

My only main question I wanted to ask was about his MRI with contrast. Zach's first MRI had LOTS of spots light up but in the contrast MRI only ONE lit up. The dr said those spots in the first MRI aren't to be worried about. They are NOT prior MS episodes. The MRI with contrast only showed the ONE (which occurred in Sept of this year, when all of this began) which means Zach has had ONLY one relapse episode ever. I straight asked if that means he has clinically isolated syndrome (which has been my PRAYER and has been what I've been holding onto!) and he said a firm YES

This is the BEST CASE NEWS we've been praying for!!! It means we are looking at the BEST CASE SCENARIO! His first episode was very mild, he recovered from it fully with no lingering issues and it's a isolated case! Praise the LORD! 

Multiple Sclerosis cannot be diagnosed without MULTIPLE episodes. Since Zach has only had ONE then he does NOT currently have MS. 

This does NOT mean Zach is "cured" or "healed." What this means is that he has the precursor to MS and not full blown MS yet. On average people that experience clinically isolated syndrome (one episode) go about 950 days before experiencing their second episode. That's 3 years until the other shoe drops. 

Does this mean we still need to pray? YES. Does this mean we still have to plan for a future that includes a life of MS? YES. Does this mean his next episode could happen sooner than 3 years? YES. Does it mean it could take longer than three years? YES.

This article is about the research they are doing in patients with CIS who start treatment ASAP after that first episode. They are finding that being aggressive in treatment DOES delay the second episode. THAT is our prayer. We are praying that we are able to find the best treatment plan possible and make all possibly helpful lifestyle changes to delay diagnosis for as long as we possibly can. Some people in this study (like 19%!) have gone a full decade without a second episode. 

3 years without diagnosis? 10 years without it? Maybe even possibly a lifetime without it? Y'all. I will take all of this HOPE and bottle it up and wear it around my neck. I'm SO thankful.

I brought with me a letter for our case worker in the adoption process. I notified her about Zach's potential diagnosis and she said to have a letter drawn up to have signed by his dr to confirm that he's fit to parent. In that letter I used the term "multiple sclerosis" and the dr said we don't need to even use that term right now. So all of you (myself included!) who have said Zach Parker has MS can scratch that and replace is with CIS ;) He said we have no reason to use the term multiple sclerosis until he has that second episode. SO let's all just PRAY that it's a term we won't have to use for a LONG, LONG TIME!

Words cannot describe the joy and just gratitude I feel. We have been SO BLESSED with a dr who caught all of this the way he has. MOST people walking around with MS have no clue they have it. Many end up in psychiatric care because drs can't figure out why they are having the symptoms they are having and they go YEARS jumping from dr to dr until someone finally puts it all together and diagnoses them. Catching someone as young and healthy as Zach? Catching it all based on ONE extremely MILD episode? It's a HUGE deal. 

I truly believe that this is ALL going to be used in a HUGE way to glorify God. Not only through our own lives but in others too. I feel like Zach being so young and healthy and being on the earliest end of the possible spectrum means that drs can use his case to learn a lot from and to really benefit others. Our dr said he's already been sharing Zach's case with others. He also said to really share with Shepherd his full medical history (back surgeries, car wreck, football) as they are learning so much all the time and may find links to figure out what causes this in people. I feel so blessed that we're living when we are because SO many medical advancements have been made in just the past few years. 

I'm so thankful for this gift of TIME. Time to savor before that second episode. Time to make adjustments for what life may be when that second episode does come. Time for medical advancements and further research that can help us along that path. Time for PRAYERS to be lifted on our behalf. And most of all TIME for us to FIGHT LIKE CRAZY and hopefully just add more and more time on! 

We will be heading to Atlanta as soon as they are able to schedule an appointment for Zach. I know we will learn SO MUCH more there and my prayer is that we walk away feeling as positive about things as we do right now. We are both very eager to get a solid plan in place and to feel like we're doing all we can to help delay another relapse for as long as possible. We're 3 months past when he had that first episode so our clock is ticking and we are anxious to start doing something! 

Thank you for your continued prayers for our family. Thank you for walking this walk with me and for supporting me in those moments where I feel like I can't keep going. We couldn't ask for much better news to end what has been an extremely difficult year and it gives us so much HOPE in what blessings 2017 will bring!

In your prayers please continue to specifically pray:
  • That Shepherd's agrees with what our Dr has said and that they do confirm Zach having the CIS
  • That they will put him on an aggressive plan to delay that second episode 
  • That Zach will respond positively to whatever course of action they decide is best (we're hoping for meds but yall all these meds are NEW which is scary too!)
  • That we go years and years and YEARS (let's just claim a full decade or more okay?) before that dreaded second episode!
Hoping to have another POSITIVE update after we visit Shepherd's! 

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