#kasnerskickduchenne

[rahrahkaz]

Clinical Trial Denial #IYKYK

We are approaching six years of Caleb and Dunky being diagnosed with Duchenne Muscular Dystrophy. The hope that emerged during conversations with other families, clinicians and scientists was promising. I wasn’t guaranteed anything, but I was told from many different people that Duchenne will look different for my boys due to the advancements in treatments that were surfacing. It was never said but the sentiment was “If you have to live with Duchenne, now is the best time for this diagnosis."

However, six years later, Caleb (10) is now nearly 100% wheelchair bound and Dunky (8) is slowing down by the minute. Don’t get me wrong, some of those treatments that were surfacing have been FDA approved, have hopes for label expansion or are close to approval. But there is so much we didn’t know six years ago, that we do know now……..none of those treatments will benefit my boys in the near term. Dunky and Caleb have a rare mutation (deletion of exons 6 – 17) which we were told early on may mean they have less impact on their cognitive ability. While that might be true, it is now thought to have an increased impact on their heart.

We are so happy for all of those that are benefitting form promising exon skipping drugs or gene therapy, but we, unfortunately, continue to watch Duchenne rob my boys of their ability to function as normal kids.

Earlier this week, Dunky was screened for a clinical trial. It wasn’t a life-changing treatment, but it was a drug that is thought to slow the progression and keep boys ambulatory for longer. There is more to being ambulatory than a badge of honor, though it feels that way sometimes. Keeping these boys ambulatory helps them burn calories and keeps organs moving that otherwise get lethargic when wheelchair bound. This journey started nearly 9 months ago when both boys were deemed eligible for a screening of this trial. One cohort, to the next cohort and then evaluating BMIs. Dan and I had already decided we wouldn’t put up Caleb as a candidate. It’s really hard to choose when you have multiple children but you evaluate their current state and what they might be able to handle and make decisions. You will never know if they are the right decisions, but you have to go with it and be confident.

In May of 2023 when this trial first came up, Caleb was slowing down at a rapid pace. He was falling a significant amount and we were seriously considering an invasive foot surgery to straighten out his right foot. Due to these factors, we passed on Caleb and he underwent surgery in the summer of 2023. We embarked on a risky surgery as we knew we could get his foot in a good position, but we didn’t know if it would help him walk. We will never know if it helped or hurt, but what we do know is his foot is straight to help with standing and transfers and we have decreased his falls risk to nearly zero given his walking is now minimal if not non-existent.

Back to Dunky, he was deemed ineligible due to his BMI for the cohort at hand. I seriously considered dramatically decreasing his food intake and giving him healthy doses of Miralax prior to the trial screening, just to help him pass. But then I prayed for clarity and answers and realized how ridiculous my plans were. So while the trial worked to eliminate the BMI requirement for future cohorts, we declined the screening.

Fast forward to a future cohort where the BMI was eliminated and we were invited for a screening. Funny enough, the BMI is no longer an issue for Dunky as we have moved him to weekend steroids and that has helped with his physique. Some believe weekend steroids may slow the kiddos down, but there is not data to support that. Regardless, high BMI slows them down anyways, so we decided to make that change. Enough time has passed since initial discussions that this disease has taken so much of my little Dunky. But here we go anyways, we had to give it a shot.

Our little guy was so brave. He reluctantly signed his name agreeing to do all of the things the trial asked of him, and it was a lot. Physical tests that would be no big deal to a typical kiddo, but causes stress on these boys that struggle so much and get exhausted so fast. There were many appointments, blood draws, heart scans, etc but he said he would do it.

And so it began. Things were going well, until the blood draw. You would think he’s had them enough that it would be no big deal, but he screamed bloody murder “you guys….I quit” over and over. It hurt my mom heart. But then it was over and he said it wasn’t so bad.

Time passes with more tests while I wait in the lobby for my brave boy and then it happened. They pulled me into the room and I knew right away based on their faces. Dunky just couldn’t complete one of the two timed tests in the allotted time, it was to get off the ground to standing. What he could do fairly easily just six months ago, had become extremely difficult and nearly impossible.

I sobbed and Dunky asked over and over why I was sad. All I could tell him was how proud I was of him for being so brave, for giving it his all. But what I didn’t tell him is I’m so damn sad that this disease is taking so much from him in what feels like such a short amount of time. I wasn’t sad that he failed, I was sad because it was yet another reminder that Duchenne is winning their bodies over.

We recovered at the hotel with chocolate milk and prosecco and thoroughly enjoyed the rest of our stay. It was traumatic for me, but Dunky only remembers all the chocolate milk I let him have and the sushi we had that night. These boys are so brave and resilient.

While we continue to notice things they can’t do, we are committed to not letting Duchenne win their spirits. As always, we are thankful for all of the love and support as we navigate unchartered territory with this disease. We know we can’t do this alone!

1-22-24

#kasnerskickduchenne

[rahrahkaz]

2-Week Leave: What I Learned

There is no shame in realizing you need a mental pause or re-set. It took me months to finally “cave” and admit I needed some time for myself. I was afraid that people at work would think I was weak-minded. I was afraid it meant a step back in my career and that my project teams and clients would think I am not accountable. I was afraid that people who knew I was on leave without an actual physical injury, would deem me crazy. I was afraid I would receive pity. However, what I learned is that I didn’t “cave” at all. In fact, what I did was an action of power. I listened to my body and did what it needed, what I needed.

Whether you are a parent to a special needs child, are a caregiver to a parent or a fur baby, have a relationship that is hard or are single with all the stress that life brings, listen to your body and your mind and fuel it with what you need. Be true to yourself and forget about what other people will think.

We have always had a family laptop, but I bought a personal laptop that is easily transportable and will allow me to close down my work computer and easily fire up my cute, little ThinkPad to do personal tasks without the distraction of work in the background. I think this is the best thing I did during my leave for my future self and I’m so excited about it. Also, a touch screen is life changing!

I learned what I needed for a re-set and it wasn’t extravagant or over the top. It was two weeks without working hanging over my head. Completely disconnected. I literally moved my work email icon from the main ribbon of my iPhone to the last screen. It currently reads 458 emails and grows by the minute, but I haven’t opened it once. It’s probably what some people give themselves on an annual basis, but I do not. I pride myself on being plugged in and being responsive, no matter what. But that isn’t something to be prideful about, that’s actually doing more harm than good. This allowed me to give myself the ability to focus on my personal life and to focus on things I was either intentionally or unintentionally shoving under the rug. Some of my focus were tasks I was neglecting for various reasons and some of the focus was allowing myself to feel the feels, more on that below.

I allowed myself to feel my feelings. I often hear this phrase, “I’m sure work provides you with a nice distraction from reality.” I heard it enough that I started to believe it’s what it should be, and I became an expert at shifting from what would have been extreme grief to work, on a moment’s notice. I never gave myself the chance to be present with the feelings that were happening. But what I’ve found is that embracing the beauty of our reality is exactly what I need to do in order to live in the present moment. Finding ways to distract my mind isn’t doing justice to what I have, and what I have is four beautiful boys that are gorgeous and happy and perfect as they are today. My reality is that two of them are in the throws of dealing with a progressive and terminal disease. My reality is that the time I have with my boys, all four of them, is precious.

My leave was such a perfect mix of doing and relaxing, individual time and together time, tears of grief and tears of joy. A few of the things I was able to do during this leave:

Brought my boys to and from school nearly every single day.

Took post school swims on those 100 degree days.

Created a reward chart to help Caleb walk – prize stakes may bankrupt me as I let him dictate

Created September’s visual calendar…..on time!

Spent 4 amazing days with my husband

Played golf

Figured out how to get 2 wheelchairs in the back of my SUV (grateful for weather tech pet ramps)

Drank plenty of tequila high noon’s, my new favorite

Spent mid-mornings at new coffee shops

Set up my new laptop that I’m in love with

Planned play dates for my kids

Logged into a website for my kids school that I never have before (we are going on year 4) to discover report cards!

Went down waterslides, many times

Attended 7 different medical appointments

Prayed, a lot

Wrote, a lot

Went on a private flight with my hubby to WI for coffee and a hike

Went back to yoga, so good for the body and the soul

Ran many miles, such a good way for me to escape the real world

Biked many miles, mostly towing a child in our trusty Burley

Found apps to manage our medical care so others can help and follow along

Fought for wheelchairs (battle not yet won)

Picked out mulch for our newly paved sidewalk and provided encouragement for Dan to lay it down

Cleaned my personal email inbox (feels so good)

Decided to take the plunge on an accessible mini-van (swallowed my ego and am doing what I know is right for the boys and our family)

1:1 dates with my boys

And now I sit at one of my favorite establishments to finish up my leave. Thank you to Carbones for always taking in our family and accepting us as we come on that day, as every day looks different for our family. One day it feels we are singing praises and the next we have been hit with bad news.

I’ve learned so much in just two short weeks and know I will need more quality time with myself in the future. Upon my “return to work” appointment with my PCP a few days ago, my wonderful doctor looked at me and said, “you are radiant, you are living, you are smiling. And this is what we are figuring out how to keep up in the future.” So I will go back to work with my eyes wide open, allowing myself to feel the feels and take breaks when I need them. I will not feel shame in what I need, but rather feel pride in the ability to know my body and my mind.

Thank you to our village for your unwavering support.

Sarah Kasner - 9-10-23

https://www.kasnerskickduchenne.org

#kasnerskickduchenne

[rahrahkaz]

Conclusion: We Can’t Do It All

Although I’m not completely fulfilling my 2023 goal of monthly blogs, I’m giving myself grace and not grief. This is a phrase that I have come to grow and love and accept, that I learned from my kids school, Our Lady of Peace a few years back. Mr. Paul Berry used these words as we navigated the COVID school years. It just works, doesn’t it? Give Grace, Not Grief. I have found this helpful as I encounter feelings of frustration daily. This ranges from watching my boys lose the ability to do things they could do the day before to countless fights with insurance to feeling unequipped to have two boys that will be wheelchair bound in the not-so-distant future (barring any life-altering treatments that they would need almost immediately).

However, I have found it equally helpful, if not more helpful, for me to apply it to myself. Duchenne has a way of pulling me in so many directions, and it’s so exhausting. I recall upon diagnosis about 5 years ago that I declared I would do ANYTHING to help my boys stay ambulatory and stay alive. I would move across the country, I would move to a different country, I would quit my job, I would sell everything I owned, I would advocate, I would prioritize them and what they need above my own needs, always. While some of that is still true, it’s also not practical as a human with a job, a husband, 2 other kids, a home I love, and family and friends that I adore and need to see. It’s also been so evident that unless I place some of my own needs above my boys, I will not be able to give them the love, support and physical assistance that they need. So here I am, 5 years later, giving myself grace, not grief for allowing myself to prioritize my own needs at times.

Where I have struggled the most is with the to do’s for the boys. It truly is a list that never ends and I’ve recently realized, I just can’t do it all. We, as a family, just can’t do it all. And so I’ve allowed myself to give us grace, and not grief. I’ll share some examples for those that may be able to relate.

 -  Caleb has headgear that he was instructed to wear nightly before getting his braces. Caleb didn’t like falling asleep with his headgear, so this required us to attempt to wake him up before we went to bed, trying to pry open his mouth, get rubber bands on what seemed like the smallest hooks in the world, while hoping he didn’t chomp down and then attaching this contraption to the front of his head. Then telling him to go back to sleep. I found myself stressed every night as this time approached or pushing out my bed time so that I wouldn’t have to execute the headgear routine. Nope! I’m not letting headgear add stress to my already stressful life. So we did it on our time. Some weeks it was every other night, other weeks it was not at all. Sometimes we negotiated with him that he needed either his nighttime braces (on his feet) or his headgear, and let him choose. Yes, this meant more weeks overall, but it eased stress for all involved.  Give grace, not grief.

 -   Nighttime braces are another pain point. Both boys are supposed to wear their nighttime braces every single night. While they tolerate them (mostly) they beg to have nights without them. So we have an agreed upon wear pattern for Caleb (right leg, both legs, none) that we felt like was a good compromise. Meanwhile Dunky, who has a mind of his own, will not go to sleep with them on at all. So I was to go in before I go to bed and try to put on his braces while he is sleeping. This is no easy task and I started to dread it and get more stressed as my bedtime became near. Nope! Not letting nighttime braces add stress to my already stressful life. So I found my own cadence. I do one foot each night and sometimes I allow myself to do none and that’s okay! Give grace, not grief.

 -   New medications are also a stressor. We were advised to start Caleb on growth hormone therapy nearly one year ago. I knew this would be an insurance fight that I just wasn’t ready to embark on as I was already fighting other medications with insurance. So I didn’t. Six months went by and during our check-in with endocrinology and asking about why we hadn’t yet started, I allowed myself grace instead of beating myself up. I simply said, “I didn’t have the time or energy to focus on it.” I NEVER would have imagined allowing myself to say that upon diagnosis. I would do everything promptly and as I was told, but the reality is I am human with so many demands and competing priorities, and sometimes I just get to choose. Give grace, not grief.

 -   Dunky struggles with his eyes. Ophthalmology is a specialty all Duchenne kiddos see as cataracts are yet another side effect of those lovely steroids. But Dunky has extra complexities as something called exotropia, meaning the outward drifting of his eyes. Unfortunately, he thinks he looks “stupid” in his glasses and refuses to wear them despite the truth that they are so flipping adorable. Watch out world because his next request was if he has pink glasses, he will wear them. I didn’t realize we were one year late for his next Ophthalmology appointment until an annual well visit reminded us his eyes are bad. In my defense (although I don’t need defense when I have grace), no one called me to schedule this appointment. Apparently, I’m just supposed to remember or be organized enough to know to schedule the appointment. Dunky will likely need surgery and of course we can’t get an appt until September. I started to beat myself up, but then I stopped and paused, and gave myself grace. Stay tuned for updates on next steps.

I must say embracing this phrase has been empowering for me. I’m not going to beat myself up over everything that I’m not doing. I’m going to celebrate all of the things that I am doing, both for myself and my family. It’s allowed me to recalibrate my priorities so that the most important things become the focus. The most important things are not nightly headgear or wearing nighttime braces on both feet, but it’s seeing the smiles in my boys faces when they make a request and I simply say “yes.”

On July 26th, Caleb will be going into surgery for a tendon transfer in his right foot in hopes he gets a bit more time on his feet before he is wheelchair bound. We are nervous but know that we have done all we can to weigh the options and have consulted with the best of the best. We feel so blessed to have our boys under the care of the best providers that are more than a clinical care team, they are a large part of our boys’ lives that we have grown to love over the years. We will keep you updated on the surgery and would welcome love and support during this time and the recovery after.

Duchenne is a beast. It is sad, terrifying, frustrating and exhausting, just to name a few. Everyday their needs get greater and I wonder how I will be able to continue to help them. Just recently I had someone say, “you still pick them up?”  Yes! I do, because I don’t have a choice! I tell my boys every single day, “I will always be here to help you, no matter what!”

July 7, 2023

#duchennemusculardystrophy #kasnerskickduchenne #motivatedbymuscles

[rahrahkaz]

Finding Joy in the Heartache

I recently had a two-hour conversation with a friend I haven’t talked to in too long.  So much has happened in life since we talked last that just the question “What’s going on?” or “How are you?” felt like a daunting task to figure out where to start.  We decided we would start conversations differently, “What doesn’t suck?”

So while I could unleash on all the things that are so hard right now, I will choose to bring up the things that don’t suck first:

 Caleb and Dunky’s infectious smiles.  We have so many days as parents filled with tears, but then we get one glance at our kids and are quickly reminded that they are happy and filled with joy.

1:1 time with each kid.  Caleb and Dunky are the epitome of the phrase “you can’t live with them, you can’t live without them.”  They fight a lot when they are together, but they also can play so nicely.  Dan and I don’t often split up the kids, because then the other parent doesn’t get a break, so the kids are used to being together ALL THE TIME.  So when this idea of me taking each kid separately to Florida was brought up, they were skeptical.  But we did it and found so much joy in spending quality time with just one kid. For once, they got undivided attention from one of us.  There was no yelling, fighting, screaming, melt downs, there was just beautiful and special time.  Most importantly, the kids got to do what they wanted to do, not what the other person wanted. Dan and I would exchange pictures during this time and it was so on point.  Caleb spent time playing school and teaching his minions math, while Dunky played in the rain, begged for starbucks everyday, ate ice cream and swam for hours.

Caleb’s play date.  We have found the best school for Caleb.  They have welcomed Caleb for exactly who he is and have embraced the Kasner family, while learning about Duchenne along the way.  And Caleb had a play date….at a friends house…….without me there.  That’s no big deal for most 7 year olds. But for Caleb, that’s a first.  His face lit up when I told him his buddy wanted him to play. I never thought we would do it. Not because he wouldn’t be asked, but because Caleb’s body is so fragile and I always worry about this safety, I didn’t think I would feel comfortable. But this family is so kind, the friend is as nice as could be, the parents both have learned about Duchenne and they were willing to make it happen. So it did.  I provided Caleb’s cliff notes, brought him over with some of his favorite stuffies and after a few hours I got to hear about the joy he experienced on a playdate without his helicopter mom.  

Swimming. We were at a pool party with other families that have kids with Duchenne. We were fairly new to diagnosis. But I watched a boy with Duchenne get up out if his wheelchair, take a few steps and jump into the pool and swim, independently, with the biggest smile on his face.  I was in awe and thought that…..I want that for my boys. So we’ve been doing just that, investing in swimming and it’s been so rewarding.  We have gone from two boys that were afraid to put their toes in the water to two boys that would now choose the water over land.

So there are some things that don’t suck.  But there are plenty of things that are hard right now, physically and emotionally. Duchenne is no joke.  While we live in the moment, I still find it hard to not look at my kids and be slapped in the face with this disease.  I share these hard things not so that you feel bad, but so that you can send love and prayers our way, in particular for Caleb. We always feels the love and it makes the difficult times a bit easier.  

Caleb is going into surgery on Friday.  His gait is so imbalanced that he was close to being off his feet but yet is still fairly strong.  We will see if it buys Caleb time on his feet.

Caleb was advised to get 6 teeth pulled! Six!  Is that even a thing?  Oh and a lifetime max of $1,000 for orthodontia treatment.  Is that even coverage? Does that even put one brace on one tooth?

Caleb is shopping for adaptive equipment to help with his mobility, I can barely say a wheelchair.  I can barely admit he needs that.  But we have started that process because we see Caleb struggle and we know he needs help. He currently uses his orange little jog stroller that swallows him up and is hard to get in and out of.  I hope the freedom he feels with this new equipment will bring a smile to his face and a joy in his heart that takes the pain away from me.

Caleb needs wheels to help him be independent.  I always thought I would be 100% prepared, emotionally and logistically for when this time comes.  Nope, not one bit.  We live in S Mpls and have multiple stairs to all 3 different entrances into our house.

Caleb has to go pee, ALL the time.  So imagine every 30-ish minutes you have to go to the bathroom but yet getting there, maybe even the thought of getting there, is fatiguing.  This has been such a struggle, more for us then him.  We just carry around lots of extra clothes and never make him feel bad for what we know he can’t fully control.

Caleb’s disease is progressing.  I see it when I look at him, I see it when I watch him toe walk on his right, I see it when Dunky gives him one little push and he falls to the ground, I see it when I watch him play outside and he can’t do things he used to be able to do, I hear it when he says, “Mommy, can you carry me to bed?”, I even feel it when I pick him up because his muscles in his armpits are weakening.  

All of that with Caleb, meanwhile we watch Dunky’s stronger than normal body struggle through anxiety issues.  But I believe in COVID blessings, because COVID allows Dunky to hang out all day, everyday, with the best kindergarten “teacher” he could ever have, his daddy.  It would be remiss of me to not recognize how wonderful his “real” kindergarten teacher is, but Dan is right there with Dunky to help him through his day, every, single, day.  It’s the most special bond and time they would never had together if it wasn’t for COVID.

So that is why I write, to put my feelings on my sleeve.  To discuss the good and the stuff that sucks  There is so much good, but Duchenne sucks.  We could not do this alone, but together we can #kickduchenne.

Thanks for supporting Caleb, Dunky and our family.  We love you!

#kasnerskickduchenne brothersforever

[rahrahkaz]

Duchenne IS our Lives

As much as we say we will not let Duchenne define us and our lives, I’m starting to think that is an unrealistic goal and moreover, almost a selfish goal.  What if instead we embraced Duchenne for what it is and all that comes with it (which is more than you could ever imagine) and just lived in the present moment no matter what that brings.

Most think of Muscular Dystrophy and think of the muscles and if you know about Duchenne, you think of those young boys whose muscles start to deteriorate at such a young age. It is true, it’s a neuromuscular disease, that effects the muscles, that gives light to this disease from an outsider, especially as the disease progresses.

At Dunky’s age (4), it’s very few outsiders that would notice something isn’t quite right as his physical differences are nominal.  He may run a bit different, he may slide down stairs on his butt (even in public), he may ask to be carried more often than normal and he may drop his drawers anywhere to go pee because he knows his body can’t make it to a bathroom.  But, he “looks” like a typical 4-year-old.  At Caleb’s age (6), most notice something is different, but they can’t quite tell what.  He’s shorter than most (due to daily steroids), he uses a manual scooter to get around (like a razor), he can’t quite participate in activities like others can, he is self-conscious, he would prefer a pull-up vs underwear, he falls a lot, he can’t climb, he can’t navigate a staircase, he tires as if he has just ran a marathon ALL THE TIME.  Think how hard that is for these kids, and then think how hard it is on those parents who must watch this disease progress and navigate the challenges with them.

Dan is out of town this weekend and while yesterday was a good day, I bet if any other parent or person was along side us for our day, they would not agree with that statement. It started at 6:08 am with Caleb calling for mommy and me negotiating with him to stay in bed until 6:30. Not unlike most kids, but the difference is, he needs our help to get out of bed. So, there is no such thing as helping yourself to a screen for a few minutes so mommy can sleep for a bit longer.  There was constant bickering, screaming and meltdowns between Caleb and Dunky about nothing of importance. Literally about how many stuffed animals the other one has, what color their toothbrush was the night before, what level of some game they are on, what time it is, what day it is, what year it is, anything.  I’m in tears and they are in tears.  So, we write a schedule for the day and decide the goal of the day is to make mommy cry less.

We go about our day and it’s great, but it involves pulling over while in route to various activities to let one pee outside of the car and then 5 minutes later, doing the same for the other.  You see stopping somewhere to go pee in a bathroom with two kids is hard enough with making them wait, getting them both in and out of a car seat and then fighting over who gets to use it first in what is typically just one stall.  You add their disease in the mix, and it’s even harder.  So, we stopped trying, we think we’re pretty good about being incognito, but care less about if someone sees us.

The boys watch their brother play hockey, they cheer on their brother while using me as a jungle gym, while other little kids have the time of their lives running up and down the stairs and around the rink meeting new friends that can do the same.  Nope, not my kids.

We get home and the balmy weather (40 here in Minneapolis) excites Caleb and he wants to put his snow gear on and play outside. Dunky (who fears everything due to anxiety), doesn’t want to put any snow gear on, but wants to stay outside.  They decide to take their scooters and go on a walk around the block. A hard task for boys with Duchenne, but I let them try to accomplish what they have their hearts set on doing. A quarter of the way through, I give my gloves to Dunky since he’s freezing. Half-way through, I have one rolling on the ground saying they can’t walk anymore and the other one begging for me to hold them.  I have no gloves and two scooters, and I honestly stop and think, I’m not sure how we are going to get home.  We decided to take turns.  So, I carry one from Point A to Point B, go back and get the next kid and do the same, go back and get the scooters and do the same. At one point I suggested they just wait there on the corner of the street and I’ll run back and get the sled.  Caleb was convinced someone would kidnap him so that didn’t fly.  A part of me wanted to tell him, “just tell them you have Duchenne and while you are cute, you come with very high needs and super expensive medical bills”, but I refrained.  We continued the Point A to Point B strategy all the way home.  I saved my boys legs, and I got in a work-out.

Since diagnosis, the physical part of Duchenne has been the focus. Just understanding what it looks like, the limitations they have, what they can and can’t do and coming to terms with how awful this disease is to their physical bodies.  But as of late, we’ve shifted into the cognitive part of Duchenne more.

We spent all day in clinical appointments at Nationwide Children’s a few weeks ago. Much of the day was talking about the effects that Duchenne has on the brain. I held strong for most of the day, but this is the part that brought me to tears.  As if the physical aspects aren’t enough, pile on all the behavioral crap that comes with it. And what we talked about; I see in my kids. While Caleb holds more of the autism traits, Dunky holds more of the “everything else” traits.  It’s bizarre and while I used to chalk it up to steroids and better parenting tactics, some of it is just realizing that this is who they are and their bodies inside are a complete disaster, including their brains.  

I watch Caleb make rules, boss his brother around, do crazy math in his head, watch clocks to the second, recall memories with dates from years ago, place things in an exact order that only makes sense to him and cry like his feelings are crushed when something doesn’t go as planned or is out of order.  I watch him fill with worry if someone comes over that may disrupt what he thinks should happen.

I watch Dunky cling on to me for life when walking into a new environment, explaining he’s scared to do what many kids would be excited to do, say zero (literally ZERO) words at school in nearly two years, turn from quiet to this uncontrollable high-pitch scream in a second, bang things against his head and kick and hit and scream as I try to hold him to calm him down from a tantrum.

We are blessed to have clinicians in this field that are helping us to understand that while some of this may be there age, some of this may be the steroids, much of this is due to the lack of dystrophin in the brain, as dystrophin is expresses in brain neurons. Historically, I would dismiss discussions about cognitive ability mostly because Caleb could nearly be a Mensa Member. He literally figured out a math pattern while playing a game faster than me yesterday, and my skill set is math.

So, what does this mean and what are we doing about it?  It means that I used to think putting them in uncomfortable situations that make them act like that would be helpful so they would “get used to it”, but I’m realizing that isn’t a tactic that will be successful for them.  It means play dates are harder and take so much out of the boys and me. It means I don’t get to see my friends as often and it means my dreams that my friends’ kids will be friends with my kids, may not come true.

I know that if our boys’ lives are such that they can’t move a muscle, we will help them and love them and be right by their side, but it’s also why I keep advocating for them and pushing for a cure.  It’s unreal what just a bit of dystrophin could do for their bodies and their brains, such that their quality of life could be exponentially better. So, we pray for dystrophin and we pray for a world free from this awful disease, not just for Caleb and Dunky, but for all kiddos with Duchenne.  Thanks to all of those who love and support us, it takes a village.

#kasnerskickduchenne endduchenne

[rahrahkaz]

It was me, but I'm still thankful!

Yep, it’s true.  I, Sarah Kasner, am the one who gave Caleb & Duncan Duchenne Muscular Dystrophy.  I am the carrier, and I had no flipping idea.  Quick Genetics 101 lesson.  I am a female who has two X chromosomes, and one of my X chromosomes has a deletion of exons 6-17 in the dystrophin gene, unbeknownst to me.  I’m thankful I’m a woman, because my other X chromosome has stepped in to save the day.  When I conceived my children with my husband (I know, too much for social media), I passed along one of my two X chromosomes and Dan passed along either his X or his Y chromosome.  Upon conceiving both of our children, I passed along my mutated X chromosome (50/50 chance) and Dan passed along his Y chromosome (50/50 chance), making these children boy boys, with no back-up X chromosome.

Boys have one X and one Y chromosome.  If a boy has a mutated X chromosome, he does not have a back-up to step in and save the day like I have.  So those boys are forced to go through life with their mutated X chromosome.  Enter Duchenne Muscular Dystrophy in it’s truest and most severe form.  Enter Caleb & Duncan.

Caleb was diagnosed in April, 2018 and it never even occurred to me that he had this genetic disease because of me.  Spontaneous mutations are real and common.  But when Duncan was diagnosed, I knew I had no hope.  The chances of both of my boys having spontaneous mutated x chromosomes resulting in Duchenne, slim to none.  So here I am, the carrier of a fatal (to males) genetic disease that I had no idea I had. 

The questions that have gone through my head are insane, even though I would never want anything other than Caleb and Duncan in this world. I would NEVER change anything about my boys.  They are miracles and they are angels.  They are my saviors and my loves.  They are my night and shining armor that get me out of bed every single day.  And they make me thankful.  I gave a fatal disease to my two sons, but I’m still thankful, even though I'm saddened daily.

Because of me, these boys will have a life that is extraordinarily harder than everyone else around them.

Because of me, these boys may never play sports.

Because of me, these boys may never have kids.

Because of me, these boys may not outlive their mom and dad.

The list goes on and on, but all of that will just beat me down.

I’m thankful for these boys that may never play sports, have kids, outlive their parents and that are required to live a hard life just to survive.

Holidays are different now because we are fearful that our holidays won’t be what we want them to be in the future.  We let the sugar fairies enter and they eat more sugar than they should ever have.  We let them get a night off of bracing. We cherish the time we have together as a family.

So today I am thankful, for the family that I have. Dan, me, my step-boys (AJ & Ben), Caleb and Duncan. Isn't it better to have kids that will be with us for a period of time than none at all? No parent ever wants to think that way about their children, but that is our reality. But our family will continue to live in the moment and embrace the now.

Thank you for all that are allowing us to embrace the now and for supporting Kasners Kick Duchenne.  We couldn’t do this without you!

#kasnerskickduchenne #endduchenne

[rahrahkaz]

How was Halloween?

“How was Halloween?” My response, “Hard.” Just when you least expect it, Duchenne hits you in the face. My kids have had their Halloween costumes for a month and been wearing them almost every day.  They chose costumes from their favorite cartoon, PJ Masks. Caleb was Owlette and Dunky was Catboy.  They have been so excited for October 31st to come, but then it came. It was different than what I expected, and I think different than what they expected or remembered from previous years.

Our neighborhood is the best.  We are surrounded by wonderful neighbors that we love dearly that happen to have kids all between the ages of 2 and 5. It’s cold this night in Minnesota, but that won’t stop us. We all meet in our front yards to take on Halloween and collect candy until they can’t anymore. They first collect special Halloween gifts from the neighbor kids and then move on to the rest of the ‘hood. The first few houses are okay, but then Caleb and Dunky quickly realize that they can’t keep up. “It’s not fair mommy, they are so fast. I’ll never be able to get as much as they get.”  

My eyes swell with tears, but I hold them back and remind them that I’m with them, will not leave them and we will have fun no matter what. There is no fault or blame, these other kids have been dreaming about this same night running from house to house to collect as much candy as possible. I would expect nothing less, no different than what I did as a kid.

We visit a few houses and it’s going okay.  But it deteriorates quickly. It goes something like this:

1)    Caleb starts getting frustrated that he can’t see the candy well enough to pick what he wants through his Owlette mask.

2)    They both start to complain that they can’t pick up the candy with their PJ Masks gloves on, but refuse to take them off because without the gloves no one will know who they are.

3)    Owlette and Catboy start getting cold. They aren’t running like many of the other kids to keep them warm.

4)    The cold starts to stiffen their muscles and the whining starts.

5)    Mom swoops in with the double stroller to help save the day.  No need for those kiddos to walk! We WILL still get more candy, I can promise you that Owlette and Catboy!

6)    Every front door we encounter thereafter brings me closer to a complete meltdown.

You see the double stroller is practically part of our family.  We use it often, maybe even more than we use our cars. Our boys are compact, so they fit in this double jogger just perfectly, even at ages 4 and 6. It’s an apparatus we bring with us everywhere we go. Not because the boys can’t walk, but because if they don’t have another option, they could push themselves too far.  And with Duchenne, a progressive neuromuscular disease, pushing too far can be damaging to the bit of muscle that still remains.

But on Halloween, this double stroller being with us meant something different.  It meant Caleb and Dunky were sitting in the stroller, at the bottom of the stairs of the front doors, while I climbed the stairs to ring the doorbell and say “Trick or Treat” on behalf of my boys. And upon the homeowner answering I found myself saying “My boys have a muscle disease and they can’t climb the stairs, can I take your bowl of candy and bring it to them to pick a piece?”  It looked like this

But do you know how many times you can repeat that phrase before having a meltdown?  I know now and it isn’t many. Three, maybe four.

So the boys and I agree that it’s time to head home. They are freezing and I’m about to burst into tears. All the sudden that stroller is to thank, we get home swiftly. Dan greets us at the door with a smile. It’s that smile that kept me from bursting into tears. The boys are so happy to see daddy and show him all their candy. I continue to survey the room. Caleb and Dunky’s faces are lit with joy and their daddy is happy to embrace them bring them warmth, like only daddy’ can do. I smile and excuse myself to the fire outside at the neighbor’s house that is keeping the adults warm. We warm ourselves with the fire, cocktails and good conversation while Dan puts Owlette and Catboy to bed.

It feels like I’m torn inside out by Duchenne when I least expect it.  I did not expect Halloween to be a time that would remind me of the beast that Duchenne is.  It’s times like these that test my faith, test my perseverance, test my strength. I will not let Duchenne win. I come out stronger and pushing harder and faster for a cure so that one day they may be able to hand out Halloween candy to kids at their own front door.

Thank you to my husband, my kids and my beloved neighbors that lifted me up on Halloween night. It truly takes a village.

#kasnerskickduchenne motivatedbymuscles wewontgiveup endduchenne

[rahrahkaz]

Long Overdue - Dunky Update

It’s been too long since I’ve sat down to write about my boys and all the feelings that come with those cute, little, adorable, naughty and hilarious stinkers that suffer from this awful progressive muscular disease.  It’s time, I can feel when it’s been too long. It’s almost like a tap on the shoulder that suggests I slow down and feel the feelings and live in the moment.  Sometimes it’s easier to just keep going, full speed ahead, but easier is not always the most beneficial. I’m living in this crazy, emotional state.  One day I’m sobbing in my car or after I get the boys to bed, just to wake up with a smile and live another day like the prior didn’t happen.  It’s bizarre.  How can you be so sad one day, yet dismiss those feelings the next? It’s what happens because there is no other option.  I’m overtaken with sadness but know my boys and my family need me to be positive and strong.

This week was hard. We are 7 weeks into school and Dunky will not talk. At all, like zero words. I sat through 90 minutes of an IEP meeting for Dunky (4) and listened to all the people around the table talk about their concerns regarding his perceived “inability” to speak.  They called it (not diagnosed) “selective mutism.” My Dunky, the crazy, silly, naughty, chatty, amazing little boy that flourishes amongst a comfortable environment.  But not school, no way, no how.  Is it his way of showing power?  Or is he overtaken with anxiety?  We think it’s the latter but will embark upon therapy to try to figure that out.

I’m holding back tears while we start to create solutions for helping him “speak” using visuals and hand gestures. For now, it’s the right thing to do to ensure that he can advocate for himself.  We talked about the concerns that being nonverbal while having Duchenne creates. Imagine his muscles are tired or cramped and he can’t take the stairs or struggles to get off the floor, but he is too scared to talk so he forces himself to take the stairs instead of the elevator and fights to stand up on his own, with no help.  Or imagine he has to go potty but is too scared to talk he doesn’t tell anyone and then spends the day holding his pee with slightly wet underpants.

We have come up with some strategies to try to help him and are seeking clinical care for his anxiety, but the truth is my heart breaks for my little Dunky hearing about his struggles. However, today, just two days after this IEP meeting, I receive the picture below.

What appears to be just a cute snapshot of our Dunky brought me instantly to tears, because it has so much meaning. Part of our discussion was that Dunky has yet to fully participate in gym (45 minutes of the 3 hours he is there) and instead chooses to sit on the bench where it’s comfortable because he doesn’t have to talk.  But one of our strategies is to have Caleb, Dunky and Daddy show up 10 minutes early and play together to get him engaged and playing and hope that it continues.  They did that yesterday and today, and this here is the result. This little stinker was riding a Strider bike and NOT sitting on the bench by himself!  There were still no words exchanged, but a small sign of comfort.

So tonight, we are celebrating the small wins.  

Stay tuned for an update on our other crazy, silly naughty, chatty and amazing little boy, Caleb.  This is all my heart can handle for the day.

#kasnerskickduchenne endduchenne

[rahrahkaz]

How YOU are helping!

Yes, YOU! If you are reading this, you have likely supported the Kasners Kick Duchenne and the Kasner Family in some way or another and it's our time to step back and say THANK YOU to everyone.  It is nearly daily that one of us has a story to share about how we feel loved and supported with this community I'm not sure we knew we ever had. Whether it's the $1 we received from an elderly woman through an exhibit at the Uptown Art Fair, or the $100's we received from kids through a Lemonade Stand, a Hug Box (bomb org, BTW) or the U of M Spirit Squad committing to our family, or the strangers that read our story and just want to help or the generous donations we are receiving to help with expenses, it's all helping.  It's bringing smiles to our face and tears of joy to our eyes to know that we are not alone. 

I wanted to share a few ways that we are using some of the funds that are being generated because this part is real, and it won't go away:

Food, food and more food.  Our kids need to eat different, so our family is eating different.  It's organic, it's healthy, it's rewarding, but it's expensive!

PT items. Slant boards and special lights they get to entice them into their daily stretching routine).

New shoes.  With new AFO's come new shoes due to wear and to fit.

Strollers.  Turns out the strollers we thought we could retire soon are our new best friends.  I've always had a love affair with my Bob (my running stroller) but we needed different types of strollers to help us maneuver the airport and crowds to give their muscles a break when most kids don't need one.

Dates with Dan. The importance of connection while raising kids with special needs is real.

Family date nights. The convenience of a meal out for all 6 of us goes further than we ever thought. It always encourages some special family time.

Travel expenses.  The Duchenne experts are everywhere.

Drugs. The steroids my boys need are not yet available through insurance.

Attorney costs to set up Special Needs Trusts.

New trikes eventually motorized scooters so they can keep up with their friends and not always feel defeated.

Burleys. Dan and I love to bike so now we each tow a kid in a burley, and those Solo Burley's are comfortable and pricey! 

Vacations and memories. It will get harder and harder to travel, especially with two boys with this disease.  No better time than now to travel and make memories.

Vitamins and supplements. They know they get 7 "vitamins" a day, not including their steroid. What they don't know is I'm also shoving stuff into other things they eat.

Housing expenses. We are already thinking about how to adapt our home in hopes that we don't have to move from our loving and Kasner-customized South Minneapolis home. This includes everything from building an extra bedroom for Minnie or the babysitter to widening doorways, to re-doing bathrooms for accessibility (even if they were recently redone), to thinking about a small pool without interrupting our U of M Sport Court, to way to get in and out of the house easier.  It goes on and on.

Everyday I am overwhelmed by how much I want to do to help my boys and fight this disease, but it is very apparent that we can't do it alone.  Not me, not my family, not my extended family, not my friends, but truly this larger community that is stepping up and showing up. To say "let me know how I can help" is turning into "this is what we are doing to help."  That's commitment and that's love and that's helping!

We can't thank YOU enough. It all matters and unfortunately, this is just the beginning. Stay tuned for so many more ways YOU can help Kasners Kick Duchenne.

#kasnerskickduchenne strongertogether endduchenne

[rahrahkaz]

Don't Ever Grow Up!

Celebrating birthdays for a child with Duchenne is bittersweet.  Caleb can’t wait to turn 5 tomorrow, October 28th.  He has been talking about it for months and he has this idea that you always get the same number of presents as the age you are.  He told me that Minnie is picking out 5 Lego sets for him. When I ask him if he wants an item for his birthday, he says “I already have 5 coming, maybe when I’m 6.”  He has memorized the birthdays of his classmates so that he knows the order of who comes next until it’s his birthday again.  He loves his birthday, the cake, the presents, the party, the attention and everything in between that comes with having a birthday. He says to me “So when I just wake up on Sunday, I get to be 5?” in disbelief.  I respond, “Yes baby, I can’t quite believe it either.”

I’ll let him eat more sugar than he should have and take a break from his braces. We will have a party and he will smile, laugh and show extraordinary amounts of joy. And we will smile and laugh with him, but deep down I feel so much pain because our time is too precious.  Parents, in particular mom’s, often talk about how sad it is to have their “babies” grow older.  But when your “baby” has a progressive muscle disease, the thought of your “baby” aging is real.  It’s not “I just don’t want them to grow up” but rather the opposite, “I just hope they get to grow up.”

We got to be the “lucky” ones the past year to talk about Caleb in the world of Duchenne because he is so young and mobile and relatively pain-free. But as the seconds, minutes, days, months pass, I cringe a little bit more each day.  I still stop and relish in the beauty of my boys and their happiness, but it feels like I have this crystal ball that shows me what their life is going to look like, but they know nothing about.  And each second, minute, day, month that passes, we are closer to what we have been told that life will look like. 

I want to freeze time and love the shit out of my “babies” until I go, not them.  But then I’m taken back to reality, I shake myself out of my dreams and pick up where I left off. I can do this, they can do this, we can do this. Happy Birthday Caleb, may your dreams come true. You deserve nothing less!

October 27, 2018

#kasnerskickduchenne #endduchenne