The Clinical Trial Hangover

Do you want to hear the real truth about clinical trial visits from the parent's point of view?  The good, the bad, and the ugly.  We've just surpassed our first year in a life changing clinical trial.  This is a coveted opportunity, one not afforded to everyone.  As one not so compassionate doctor said to me, " well that's how the clinical trial ball rolls".  So here we are a year later with one child in and one child out of the trial, both with the same awful disease, it's an indescribable feeling.

We need to really look back in a very humorous way because it is like having a hangover every month.  Every monthly visit is like a hangover for the parent accompanying the child.  Here's how it's similar:

1.) You have dry, cotton mouth

I remember one visit to the research floor.  Nicholas had pulled up a table attached to a chair that wasn't properly supported, it's supports were not locked in place.  I put my coffee on it, and it balanced there for about an hour.  Then all of the sudden the table gave out and the huge cup splashed to the floor flooding the whole room with coffee.  I remember having to leave the room, and both the nurse and housekeeping said "wow, you really flooded the room".  That was it for me.  That's all I had to drink that day.  I felt like drinking it off the floor but knew I could contract some horrible hospital illness.  All of the staff probably would have helped me if I asked to go get something to drink but I didn't. I'm not leaving Nicholas. So there I sat, and the next several days after I got home, I felt dehydrated, and the dry hospital air didn't help.  I've gotten better about packing food for these visits, and surprise, surprise, actually eating healthy while there makes you feel a lot better but every visit is different.  Sometimes I have nothing, and go home dehydrated.

2.) You have insomnia at least one night or more during the visit

You're worried about the procedure, or it's too hot or cold in your hotel room, or you sleep with the lights on in the hotel, or your sweaty son is cuddled right up to you.  We have to sleep with the window open or Nicholas has terrible issues with breathing.  This only works in some months but in many months I am shocked by how big the flies are that enter your room!  Like the size of horses. I wouldn't recommend really that anyone sleep in the city with an open window without a screen.  It's not good. You cannot sleep, and it's a cycle of no sleep then passing out the next night and on and on. The night of one of our clinical trial visits a nine year old boy was shot in an alley by a gang.  I didn't sleep a wink that night as I watched the mother talk about loving and missing her son.  It broke my heart and my brain as to how that could happen to a child which brings me to the next one.

3.)   You learn a lot about the city you're "visiting". You feel like you live there too.

I am so thankful to be going to our second home.  We saw the "We Believe" sign when the Cubs were vying for the World Series, and contrasting tragic shootings and gang activity. Both Cleveland and Chicago have suffered so much this year.  I love talking to people at the park in Chicago.  One Serbian nanny in the park, wanted to know so much about my kids and their disease.  She talked about America and how many restrictions and rules we have and how she really liked it and it made her feel safe.  It was such as interesting, and enlightening perspective.  I meet people of all religions, and was fed homemade cookies in one of the waiting rooms by a nervous Jewish mother.  It's a beautiful picture of life that really gives you a lot to think about and to appreciate.  Where else can you see struggle, success, strife, and diverse views all in one place, it is truly beautiful, a beautiful culmination of society.

4.) You get sick, or if you're not you look sick.

You run yourself ragged, and put yourself second or third or forth, as a result you get sick.  I shuffle around my neighborhood for several days when I come home without brushed hair, dry skin, a face with a cold, and sometimes I hardly get dressed in anything that resembles adult clothes. Neighbors ask me if I am OK but many can tell I am not.  There is something about being in the hospital that just makes you tired, and just sucks the life out of you.

5.) Your kids might scold you or learn bad words.

Nicholas calls them "potty words". I had no idea that I was even saying anything bad.  I couldn't find my wallet coming out of one of the parking garages, and apparently I said, "shit, where's my wallet".   I whispered this by the way. So when we got home, Nicholas started testing us saying shit all the time.  I would also like to tell you that when we were in Chicago the lines were being painted on Lake Shore Drive, so it was a free for all, cars driving wherever they thought the lines were.  I got beeped at, and said something quietly, and from the backseat Nicholas shouted, " I told you to be careful! I told you to drive safely!  You need to drive safe Mom!" Geesh, sorry.  Often after we have been discharged, my sweet five year old says we do not need to eat, we need Legos! Often that is what happens, often he is in charge for a fleeting moment, because he's been through so much a small decision is a tiny sacrifice on my part.

6.) You fall in love with people.

The people in the hospital are everything.  Nicholas is in love with the nurses, and so am I. All of the staff is amazing, and Nicholas says he misses them when we're home. He misses the bacon chef. His favorite nurse. We also make the nurses laugh a lot, and sometimes they're hurt by the swat of a small foam sword.  The study staff and doctors are so much fun to get to know, and they're really good at their jobs so it's easy to fall in love.  You have permanent beer goggles for all the people around you.  We love them, and they love us.

7.) You learn what you're good at, but then you don't know what to do with it.

Nicholas was in recovery and up rolls two people with an xray machine.  They hand me the lead vest to wear.  I say loudly, " I have to put on my kryptonite vest Nick to protect me, like Superman. " "Alright lets put that flash light finger on (pulse ox machine), it gives you special powers to have your finger light up, let's get under the covers and light the way!  The staff at the hospital says, " you are so creative. I am going to use those things you said, you are so neat and creative".  It reminds me of my mentor who told me that every time he used to see a commercial on TV, he'd think Amy could create that...so what do I do with these creative talents?  Not sure.

8.) You hide from people

Yes, that's me hiding behind the huge display of Christmas Ale by the check out.  Yes, I am hiding from you even if our eyes locked.  I like you but I can't talk to you, and I don't look well so that just exacerbates my shyness.  It's not you, it's me and I'm sorry.  I just can't. I am recovering from my trip. I have done this more times than I care to admit.

My husband has told me repeatedly to stop hiding from people I know in the grocery store, etc.  He said it's weird. You know it's bad when an introvert tells you this feedback.  I told him I don't know what to say to people, "Hi, my kids have a rare genetic disorder and oh look there's a sale on mayonnaise? " He said, yes just say hi. So I guess if you could help me with this and make me feel comfortable somehow that would be great.  No pressure, something like, "Hi Amy, how are you?  I almost didn't know it was you because you are normally so beautiful.  Were you just in Chicago?..then I might just peek out from behind the Christmas Ale....that would be very helpful, thank you in advance.

9.) You think you look good and are kind of proud of the ensemble you put together.  But you don't look good at all.  My face is dry.  I turn ten shades lighter in the hospital, and my clothes are totally de-shelved. I am a mess. I discovered Lush products on one trip to Chicago, and kept buying these little pods to apply some first aid to my face.  Nicholas loves going in there, and buying giant blue planet looking bath bombs that splatter my tub with glitter for weeks afterward. However, he does note, " you are done Mom, you're not buying anymore. no more for you". What did I do?  lol.

I am still debating about sharing a selfi I took with a Star Wars sand thing visiting the hospital.  I am old looking, wrinkly, tired, and forcing out a smile.  It's a nightmare but you can for sure see what I have been through.

10.) You've over indulged but not in alcohol. In stress, worry and fear but in the end the hangover feels the same.  You're kind of disoriented.  Wondering what happened during the whole trip, and wishing for the hangover to end and then it does.


If I don't laugh, I would be sad.  So this is my comical view of what happens to me during the visits, and just think I am not even the patient.  The only antidote for this hang over is refocusing my brain on things that matter;  love, laughter, play and work...a cure would also be helpful, thank you in advance!

Hiccup,

Amy

Meeting Marilyn

I'm an old dog.  I've developed training content, delivered content, attended and received content and I rarely, rarely see anything new.  I am so impressed when I see something new.  Many times the content is repackage concepts from ages ago with a tiny new spin....until I met Marilyn King that is and Olympic Thinking.  

I didn't know who Marilyn King is, as some of you may be saying to yourselves now.  She's an Olympian who has an amazing story, not just amazing an incredible story.  She's done a lot of work with schools, companies and others. She talks about Olympic Thinking and how you can apply it to your lives or business.   I watched this YouTube video in preparation to hear her speak: https://www.youtube.com/watch?v=Trx7mnVOtck

Marilyn is an intelligent and lovely woman who is immediately engaging. I listened to her talk and was thankful that I was not on video conference as what happened next was completely unexpected. My throat started to get dry and tighten as she talked.  I was supposed to be writing a mantra or intention regarding what I was going to focus my Olympic Thinking upon.  Tears started rolling down my cheeks. Why was I crying?  I had never reacted to anything like that ever.  I wasn't sobbing but tears were just running down my cheeks in a steady stream but I wasn't sad.  My reaction was out of my control.  It was just happening.

I was supposed to be doing something else but my brain kept shouting this; "I wish I could heal my kids.  I would like to be able to heal my kids.  I can heal my kids.  I am healing my kids".  Wait, I can't heal my kids.  What is happening here?  I kept going with the thought and it became this..."I am healing my kids by being an advocate, and being in tune with their needs.  They're getting better every day". Wow! Tears were still coming down my cheeks but I didn't care and didn't even know they were there.  My brain was flowing and I was being taken on a journey.  I thought of all the MPS parents and their kids.  This might be uplifting to them.

The discussion ended, and then I began thinking.  I can't heal my kids.  I am not a healer.  I am not a religious figure.  Marilyn heard about what happened and talked to me 1:1 directly.

I'll keep much of what we talked about private because it was amazingly deep and personal.  Marilyn asked me, "Are you OK?  How are you dealing with all of this? How do you do everything you do?  Have a demanding job, have children with an illness, are you taking care of yourself?"

I replied, " I am not an Olympian but I run.  Without that, well...that is my release." "Truth is I am not OK at this point in time, I'm in a funk.  I am frustrated because I am everything.  I am everything to my family". (That even chokes me up a little bit typing what I said.)  I speak for our family to the doctors.  I research every option, explore everything I can to help everyone.  Sometimes it is frustrating, and once in a while I get frustrated with having so much on my plate."  Many times I am OK with it, in fact 95% of the time but sometimes I think it's too much for one person but I can't adopt that attitude...I can't think like that. I cannot. I have a great, supportive family. My family is awesome.  My husband is awesome."

Further, I said, "Marilyn, I can't heal my kids."  Marilyn shared resources, personal stories, and taught me that I can do what my brain told me I can do.  There are things right in front of me that I can do. Things like guided imagery for my kids (cancer patients use this), she told me about Sheva Carr whose story resonated with me so much. The children Sheva was helping in a war torn country made her almost sick when she had to leave them....this speaks to me I cannot make myself ill while I try to help my children as well as a whole community of rare diseases.

Every day.  Every day...I say to myself, " I am healing my kids by being an advocate, being in tune with their needs.  They're getting better ever day." Every day.

Thank you Marilyn.  Thank you brain. Thank you Olympic Thinking.

Amy

Raising Rare Boys Long Drive II Survive Competition Update!

Passion

Is it literally possible to have more passion?  I am here to tell you.  Yes.  Yes it is possible.

I always felt passionate for my kids, my family, my work, being athletic, etc.  I never really charted out on paper where to direct that passion.  I stumbled upon great ways to take all those thoughts in your heart and your head and direct them in a certain direction.


There are two things that made me realize that you can turn passion into tangible actions and results.

1.) The Passion Planner

and

2.) The book Creating Innovators by Tony Wagner.

I have a 10 minute commute each day from dropping one of my sons off at school to work.  One day last November, I caught the "What's Trending" segment by Carla Marie on Elvis Duran and the Morning Show.  It's actually right here: http://www.elvisduran.com/articles/whats-trending-461825/whats-trending-november-18th-12981210/

I love to look at my home and work schedules in one month views.  I bought the Passion Planner then set my passion to work.  I dove right into creating "mind maps" in the Passion Planner.  It is a great tool for plotting out what I really want in one year, 3 years, my lifetime, etc.  I had used mind maps a lot but never on some of my own personal goals.  Here's what I wrote for the One Year goal (yes I wrote in pencil, ha ha!):


The Passion Planner calls this a "Game Changer".  Then I took that goal and popped it out further. One of the branches of the Mind Map looked like this:

This was only one piece of my mind map.  I brainstormed ideas for getting my kids involved in sports, how to help Alex (my severely affected son), how to be more fit and healthy myself, etc.  In my overall 1, 3, 5 year, and lifetime plans I have other goals like Financial Health, Luxuriating Our Home, my career, etc.

I look at these goals every week incorporating them into my daily, weekly and monthly activities.  Thus our recent launch of our non-profit, raisingrareboys.org.

Why do I have a 1 year goal to have a healthy family when my kids have a fatal, rare genetic disease?
Doesn't seem very smart now does it?  You can sit and wait for someone else to save you; a pharmaceutical company, the U.S. Food & Drug Adminstration (FDA), the National Institute of Health, etc.  They may not make it happen, and they certainly can't do it alone.  You have to have a part in your own destiny. We have to take part in doing something. Our kids are counting on us to do something. Our young children's lives are counting on us to do something to help them.

When Alex was diagnosed with Hunter Syndrome at about 18 months old, we were given choices.

1. Treat him with Elaprase knowing that it cannot pass through the blood brain barrier to treat his brain and central nervous system (CNS),
2. Try a Bone Marrow Transplant but that carries the risk of morbidity and may not also be effective enough to produce enough enzyme to keep his brain and CNS healthy, 
3. Try to get into a clincial trial just starting (the Intrathecal Trial that Nick is in today) while treating him with Elaprase. 

There were other choices like do nothing, etc. but above are the main three.  

We made both the right and wrong choice.  At the time, data indicated that we were possibly facing a mild gene mutation but couldn't be sure.  75% of kids with Hunter Syndrome face Central Nervous System involvement so we knew that as well, so CNS is going to need some support.  We met all sorts of kids who on the surface looked like they were doing well, and some severe.  We decided to treat with Elaprase but discussed involvement in the trial but didn't pursue it fast enough.  By the time we called, Phase I was full and it was moving into Phase II where it would have stiff IQ testing requirements.  So, here we are. We didn't have any experience with clinical trials.  The safety phase just seemed too scary.  We made the wrong choice for Alex, and because of it he is suffering more, and it could shorten his life span.  We made a life altering choice.  It sounds like I am beating myself and my husband up but we made the best, supported decision we could make at the time and hindsight is always 20/20 as they say.

For every negative reaction there has to be an equal and opposite action (Newton's law).  We have to fill the pipeline.  We have to support research, we have to support current progress in gene therapy. We have to fill the pipeline with treatments for all kids with MPS, including Alex.  This is the reason for the launch of our non-profit.  We have to do it.  We have to do it for Alex.  It's the only way to right our failure.

Then this summer I read Creating Innovators by Tony Wagner.  I saw this book through discovering the AltSchool in San Francisco. They have a recommended reading list (http://blog.altschool.com/the-future-of-education-our-recommended-reading-list). What an amazing little trail, to find a great book.  If you are looking for how to raise young innovators, you like education reform, or are against standardized testing this is the read for you.   There are a ton of take aways for parents, e.g., offering a buffet of interests to your kids.  You can use a lot of the suggestions at work and in the corporate environment too.  The entire summer I fostered a boring environment.  My oldest son went to Invention Camp and then I bored him the rest of the time to facilitate him making things in my house, exploring nature, golfing, playing baseball and fishing like crazy. Let's call this Project Bored-Him. No offense to his babysitter (she was on board with the mission) and Invention Camp was amazing! He loved it! The other thing that this book taught me was about the differences in people who are innovators, how differently they think and what innovation needs to thrive.  It helped me further organize our passion for saving kids with Hunter Syndrome.  No one should have to live with the MPS/ML diseases they are terrible, hands down.  I thought about one quote from the book every day for a whole month about sometimes when we're trying to prevent something bad from happening to our kids, or protecting them from something bad, we might not be able to prevent it at all (that's major paraphrasing) and we shouldn't let that get in the way of their experiences. I think our kids will have their lives shaped from living with this disease and how we've dealt with it relatively positively. What if I can't save my kids?  What if there isn't enough time to save them?  That weighs on my mind but we have to push forward, standing still doesn't feel like the right thing to do.  Throughout the book, it talks about Passion, Purpose and Play.  I think our Long Drive II Survive competition that we started last year embodies just those principles! That's why last year it was so fun, and we hope to keep it going annually!

So off we go launching into our new non-profit; our success will be measured in lives saved, lives improved, and lives touched.  So now you know, why now.  This is why, and maybe some of the tools the Passion Planner and this book can help you too.

Amy & Her Awesome Family

Summer

Surviving our Summer

For Mid-westerners, the summer is precious.  You don't survive it.  You welcome it.  It's the season of slow starts to days that seem to last forever in a good way. It's endless sunshine but always strange weather. Summer is the revival of festivals and outdoor concerts, Cedar Point. Countless hours at the pool, giggles, running, bubbles, lightening bugs in the dark against the starlit sky, campfires, s'mores and all things that make childhood great.

Not exactly our summer.  The way we survive living with Hunter Syndrome is we strive to get past the first obstacle then the next then the next. We know that sometimes things are temporary and will get better. When you start weekly infusions you get past them until they can be done at home and not in a hospital. Your kids do not want to go to the hospital weekly. You get past monthly clinical trial visits in Chicago to the extension study where it's hopefully closer to home. You cherish people who help you, who are selfless and who think of you first.  We had several sweet, selfless people help us this summer.  You tell yourself that you just need to keep going! You just survive it. You compartmentalize it.  You arrive at it. You watch it go.  You make the best of it and then you hope that nothing unexpected throws things into more of a tizzy than it already is, and in the midst you have a life and somehow it works.

This is what we did, and we made it through!  We made it through June, July, and now we're making our way through August.  In June, Hunter Syndrome and living a normal life collided creating a pace that was an all out sprint all month long. As parents we feel the weight of getting everything done that Hunter Syndrome requires; weekly infusions, planned and unplanned surgeries, bouts with random illness, clinical trial visits, finding child care for special needs, planning regular summer activities around Hunter Syndrome, while working and taking care of our family...when you list it out or blog about it...it's unbelievable. During the summer our careers were also in overdrive, but we just kept going.  With two children with Hunter Syndrome, both having such disparate experiences it's starting to feel like an ever revolving door, in and out to this and that. We also did our best to have fun, and give the kids a great summer but it was a struggle to keep the balance! We missed spending time with our friends, catching up with old friends, and celebrating our wedding anniversary.  If we missed you or something was canceled, know we still think of that and miss you. We'll make up for those misses as we're still so grateful for our lives, for our boys, for the opportunity to fill a clinical trial spot, and to keep driving to keep our boys as healthy as possible.

Surgeries and Clinical Trial Visits

In June, Alex's surgical needs became a top priority.  When a child goes in for surgery, especially a medically complex child, lots of appointments are needed, letters, and paperwork are required from specialists to essentially clear the child, and OK the surgery.  With Hunter Syndrome, you have lots of specialists.  It is a lot of work for the parents.  Especially if you're due for a followup or the physician wants to see the child for an updated look at their health.  These clearances are required from everyone; genetics, pediatrics, all specialists, as I said it's a lot for Alex and it's a lot for us.  I continue to be so impressed with some of his physicians who always put us first, and think of our needs and do whatever they can to help ease our worries and medical load of appointments.  I am so thankful for those physicians. They are the ones who really get it.

Coming out of surgery

Going under anesthesia is a huge event for a child with Hunter Syndrome, we work with physicians to prioritize and "piggy back" all the tests, procedures and surgeries that will occur with each anesthesia scheduling.  We have a backlog of preventative surgeries where the condition is just rearing its head...e.g. carpal tunnel, and surgery is required sometime but not at this exact moment. We also have a regimen of testing that requires anesthesia.  We essentially carry around an app, a planner and a backlog list of things we need to get done.  Genetics does a great job helping us with this, we really couldn't survive long without them.

Heading home, not feeling great

So Alex went in for surgery in June.  Getting a tune up on the ears that were causing uncomfortable pressure, and again that fluid creeps in every time those tubes fall out.  Thus, he's a candidate for permanent tubes.  So fingers crossed.  We're hoping this addresses the can you hear, how clear can you hear dilemma that we've been dealing with for some time (almost 2 years), and makes him more comfortable as well.  Hearing aids are reprogrammed with the right levels, and we're ready to rock those puppies out getting some good quality sound into those precious ears.  On Facebook, I gave a compelling account of how hard it is to jam hearing aids into Alex's ears.  It's like tackling a football player, and taking those tiny little things and shoving them in a very physically strong, strong willed child.  A basket hold or strong bear hug is required, and it is not for the weak.  We are on it though, he hears way better with them on! We are keeping the faith in this department and trying to bolster total communication! He also had hearing testing, an ABR, new ear molds, etc.  So it's go time...we have to help Alex develop more language if he can!

Next were his teeth.  Like many Hunter Syndrome kids, Alex chews things wearing away the enamel on his teeth.  It's horrible.  He had tons, and tons of dental work.  Gladly he did his follow up here in Cleveland without general anesthesia which is nothing short of a miracle, and shows that he is alert, he knows what's happening, and he's willing to comply sometimes.  Our master plan for Alex is to keep working on the issues caused by Hunter Syndrome improving his overall quality of life.  We watch clinical trials for him, and continue to hope that treatments progress and become available that can help him.  Alex isn't declining rapidly, it's just that he isn't moving forward and developing at the same pace as his peers. So, it's a slow decline.  He has been through so much this summer we tried to let him rest as much as possible.  He also had to deal with some random illness throughout the summer that was likely tied to just the regular issues Hunter Syndrome creates with their intestines.

Not one summer day goes by that we don't think about what we can do for Alex. For us he remains a puzzle, that we're trying to complete because he's worth it and he's completely adorable.

What we build at clinical trial visits from Legos and a Coffee carrier!
"...one small step for man, one giant leap for mankind"

Nick had a clinical trial visit each month.  We either drove or flew into Chicago for these visits trying to make them as "fun" as possible.  It is heartbreaking for even business travels to see Nick board and de-board a plane.  He sobs for his daddy.  When his older brother Jack was able to attend, it was a nice distraction from the difficult clinical trial visits.  Nick is 4.  This is very hard for him even if it's not the worst procedure we've ever been through.  Nick continues to do amazingly well!  He hits his milestones, and you would never know he has Hunter Syndrome.  Two scars from his medi-port and intrathecal port are the only indications at this point that he has Hunter Syndrome.  In August, we have two visits and our remaining schedule for the rest of the year is very busy with multi-day visits pretty much every month till the end of the year.  It will not be easy but we will get through it.  We're still holding out hope that this gets approved soon.  All Hunter Syndrome kids need access to more treatments, especially those that treat the brain, and central nervous system.

Flying to Chicago

Then there was a whole lot of Fun and normalcy

Jack who is nine kept pushing us as a family to get out even though we were exhausted.  We saw fireworks for the first time all together sitting outside of our car.  We went bowling.  Joined the Zoo, and visited it.  Went to the Lego store every clinical trial visit, and joined their VIP program.  We saw a piano that plays without anyone playing it in O'Hare (Nick's personal favorite).  We swam, we swam, and we swam some more.  The boys golfed and golfed and golfed.  Jack did really well. Nick and Alex get some great hits too. There was a lot of baseball played.  Alex went to special needs camp. Lots of running, jumping, digging and playing.  All done in and around Cleveland and Chicago.  No vacations but as much fun as we could handle!  Some things we are still cramming in despite school starting, like a visit to Cedar Point.  All in all, we did it.  Summer still leaves me with a bit of sadness as they start school.  My husband never understands why I say I miss them when they go back to school but I do.  I will miss them until they come home off the bus!  So cheers!  We did it.  Let's revel in the fact that we got through summer, and we did pretty well!

The Kissing Ninja

At the end of May, Nicholas had a 3 day clinical trial visit.  This is a long time to be away from home for a 4 year old, and he missed his daddy very much. The trial requirements aren't incredibly pleasant, as Nick describes it, he gets a needle stuck in his back and they push some water into him (Intrathecal dose, this is the medicine that's helping his brain), and a lady comes and puts stickers all over him and they have wires to a "puter" (computer). This is how he describes an EKG.




To cope with this visit, we went to the Lego Store in Water Tower Place (ahem we have a VIP Card : ) ).  Nicholas bought a small Ninja sword and transformed himself into a fierce, fighting Ninja who would defeat and take on any Ninja who challenged him. As we walked to Lurie Children's Hospital that day, we would pretend that there were a group of bad ninjas in the alley.  Nick would jump out and say "hi ya hi ya hi ya, all clear Mom!"  Then on to the next alley and so on, we'd find Ninjas hiding in bushes, closets, and under the desk of the nurses' station.  It was the way he was coping, and it was fierce but adorable.

He challenged the nurses in the Clinical Research Unit, and would come after them with his fierce "hi ya", and the tiny sword would issue a bit of sting to anyone it hit. After he hit you, he would blow two kisses your way, and flash his cute little smile. Clearing ninjas out of the alleys and fighting nurses was only to prepare for the "big battle" that was about to go down.  Riding the escalator up that morning, a volunteer in a blue vest who saw Nick with his sword, he was traveling the opposite way as us, and yelled" you!, you!, you!", and Nick yelled out, "hi ya hi ya", and gave a mighty smack of the sword his way.  The volunteer stared him down, and Nick didn't break his glare either.  It was on.  Nick in his funny manner said, " that guy, he's a ninja".

We went on to our exam, and were released to head over for some psychology developmental testing.  Nick and I walked over to wait for the shuttle.  Then we saw him, the blue vested ninja.  He said to Nick, "You!  You! I am going to fight you!" He got into his karate stance, and Nick waved his sword around furiously fighting the volunteer, yelling "hi ya hi ya hi ya!  I get you bad Ninja!  I get you!" Sitting on the bench watching was a Japanese man who was laughing at the scene unfolding as we were all just waiting for the shuttle.  Everyone was looking, and watching the fight.  The volunteer ran off, and yelled, "you!, you!". Nick blew him two kisses as if to heal any injuries he had just inflicted.  Nick stood proudly waiting for the shuttle knowing that he had made the City of Chicago just a little more safe that day.



Never underestimate the power of hospital volunteers, they can take a patient's day and make them forget about how scary or painful the hospital is...  Thank you bad Ninja whoever you are, thank you for making a little boy's day and knowing that sometimes ninjas just need a good battle, and a victory! Like a good Ninja movie with subtitles, this battle isn't over, we'll be back to fight you again!    

Hi ya, hi ya, hi ya!  Kiss, Kiss,

Amy and Nick

MPS Awareness Day, Alex 2015

MPS Awareness Day 2015

My First Mammogram

The very first blog I read years ago after my kids were diagnosed with Hunter Syndrome was a blog written by someone named Amy. Amy had a son, maybe two, with Hunter Syndrome, and it seemed to be the severe form.  Amy also had breast cancer but had elected not to have chemo, not to have radiation, and to let the cancer run its course much to the dismay of some of her family.  Amy passed away and her husband wrote a blog about her, and her passing.  I do not know these people but I won't ever forget reading what they wrote.  It was raw, real, and it was a love story. Her husband deeply loved her. I am not going to dramatize what is going on with me any more than I should, I am not that Amy.  That blog though, I'll remember for the rest of my life.

Our sons are very physical.  If you're not ready, holding a catcher's mitt up ready to catch the baseball, you're hit in the chest.  If you're not ready to catch the football being strewn your way, doesn't matter, you'll be hit with it.  I am constantly being leaned on, leaned into, and hit with sports equipment.  As such, I developed a lump in my left breast.  Astronauts in space can see this lump. There's the moon, other planets, and then the lump on my left breast, it could be picked up by satellite imagery.  I don't want to leave you with the wrong impression, it's not distorted or disfigured but you can feel it, it's there.  So, I went to see my doctor and we developed a plan.  A plan that I was happy with, and comfortable about progressing.

The plan was I was going to have my screening mammogram which I was due to have now, or last year.  Apparently, things have changed since I last saw my doctor.  Women are now supposed to have a baseline mammogram prior to turning 40, so that it can be compared to see if there are any changes in your breast tissue.  I didn't know that because it is rare that I am ever really concerned about myself, and maybe they told me this but it didn't sink in in the face of all that is going on with Hunter Syndrome.  Most of my appointments are second priority, I get them done but saving our kids is first priority.  I still make mine a priority just not the highest.  I know I need to be here to help them so I get them done just not on the timeline that is expected.

So the lump was concerning, and Dan was concerned as well but we weren't alarmed.  In I went on a Saturday, filled out my form, and then discovered that because I had a lump that they wanted me to go directly to the Emergency Room (ER).  I said, "no, no I will not.  I will go home, and then I will be none the better, not having a preventative screening or anything."  My sons have a rare disease.  I am lucky I am here to get preventative screening done.  I need this done, please, and then I will do any follow up afterward.  I promise.  Reluctantly, they finally agreed (and I am being nice here, this took a ton of polite fit throwing).  The mammogram wasn't unpleasant.  It was much easier than I expected. For men reading this blog who may have never had a mammogram, you can simulate it by taking a book or a door if you're that brave (that thing with paper, not an e-reader) and slowly shut it on your penis until it's uncomfortably smushed flat (as flat as you can get it).  That's it, that's what it's like and don't move or breath, or dare scream.  : ) You're welcome.

A day later the doctor called, and stated he ordered a diagnostic ultrasound and mammogram.  Not unexpected, so I scheduled and I went.  I met the sweetest of angels who work there. I sat in a waiting room with a whole bunch of other women wearing pink gowns, some sharing their stories of what they had been through.  I felt at peace waiting.  I sat quietly, and observed this world that some of you have had the terrible experience of being in.  Waiting for the diagnosis to come, waiting for those words to be said from a doctor's mouth.  The women working there told me if I ever needed anything to call them directly, they shed a tear for my sons' story, and  were amazed by my strength and attitude. They shared some of their own strength with me.  I was more enamored with them and what they do every day.  One sweet, angel said to me, "you really don't care, do you?  you don't care that you are here facing this scary situation". She was right, I didn't but I was there so I cared just enough.  I have received so much bad news, had to sit in so many chairs, and hear the hardest of words.  It felt like one more chair to me, one more face, some more words, and I had no fear, not in that moment.  You could say but you would have fear when you hear the words cancer, not really I am numb to those words too as I've watched my own father and family deal with those battles in the past but I would definitely prefer not to hear them.

I think it is so considerate that they give you immediate results in the diagnostic clinic.  That is so considerate.  With genetic testing, sometimes you have to wait a month.  We had to wait to hear our son Nick's confirmed fate, and Alex's too although there was strong supporting evidence but not with Nick.  This is what I was given after my mammogram:

PROBABLY BENIGN

I showed this paper to everyone, and told some folks I had confided in what the paper said, "Probably Benign."  I wished at that moment, my breasts had velcroe and that I could detach them, take them to a window in the hospital and say to the staff behind it, "here are mine, they're broken, can I have a new pair?"  So the good news is I will be monitored closely since I have no baseline mammogram they have to take in data and see if things change.  When I tell this story to friends, so many of you, tell me your story.  So lets all just take care of ourselves together, we need to, we need to stop putting ourselves 2nd. People love us, and they need us...we're women, we're mothers.  So follow up, do right by yourself.  I will if you do too.  A voice of a husband helps too expressing concern, and gentle urging.  It helped in my case too.  

Next, I scheduled some minor surgery on my leg.  Since I was on a roll taking care of myself, why stop following up on things years overdue.  For the surgery, I was offered the option of Valium or nothing.  I opted for nothing, and of course there was a local administered during the procedure.  I was a little nervous in the moment, in the room, and it was easy surgery but it made me realize how brave my kids are, they are so very, very brave.  Certainly they have a different level of comprehension than a woman in her 40s but they are so very brave. We do a lot of hard things as parents of kids with rare diseases, we try to figure out ways to comfort them on the way to the Operating Room.  We weigh whether they should get pre-med and not remember going in, or if we should hold their precious hands, wear a sterile suit, and walk them back, hand in hand.  Over time, if we're lucky these needs change, our kids grow, and become more aware and it becomes harder to know what to do.  You can't always be right, and you live and learn but you'll see real fear in the process, and you'll never forget what that looks like.  I recently held Nick's hand, and even carried him back to the OR, and huge tears ran down his face as he knew what was going to happen.  In the moment, I told the Anesthesiologist I made the wrong decision, I had no idea that his awareness changed so much that he could comprehend what was about to happen.  It's an indelible memory probably for more than just me.  Brave children, I am in awe of you.  I promise to try to always do right, and lessen the wrong, but you are my admiration.

Amy

The Making of Husbands

Dan and I (Amy) know we are raising young men who will become co-workers, friends, boyfriends, husbands, and fathers. We take this seriously because someone will have to live with them eventually, and if we get this right, they won't move back in with us.  This is assuming that Hunter Syndrome treatment progresses and our boys do this well too, but we believe this will happen with hard work.

Mission #1: Raise them to be kind and polite

I brought groceries home today, and Nick greeted me at the door with a huge smile.  He said:

"Thank you so much Mom! Great job! You bought these for me? Can I give you a hug? "

He proceeded to open each bag as if they were presents.  He opened a bag with two rotisserie chickens...

"You bought chicken for me, Mom!  Thank you so much! I love these, these are my favorite!"

Oops, I bought two that was a mistake.

"It's OK, Mom. Don't worry about it.  Can I give you a hug and a kiss?" 

"Dad, look shaving creme.  Mom bought you shaving creme.  Hug Mom, Dad, give her a hug.  Now say thank you. Now you're supposed to say you're welcome.  Look Dad, Mom bought your favorite drink.  Give her a hug. Thank you Mom, thank you!"

Don't you wish you were greeted with groceries like that? After you've dealt with mad, resting grumpy face, grocery store shoppers who are mad that it's snowing, AGAIN, and to be greeted like that by Nick is just awesome, really awesome!

Alex also used to cry at daycare if someone else didn't have a milk, and he did.  Jack also has a special place in his heart for special needs kids, and goes out of his way to help them at school.

Of course they're not perfect, but they're doing pretty well in this department.  Always room for improvement though.

Mission #2: Mind your basics

These are the don't smell like a turtle, always put the toilet (lou) seat down (which they do!!), brush your teeth always...just don't emit any gross smells. If you have to, do it in privacy, and for goodness sake don't emit them on anyone and laugh about it, it's not funny.  We know at this point you like to laugh about farts, and it's a struggle to get you to wash yourself but you'll get better with time.  Good job on the toilet seat though keep it up, well down.  

Mission #3: Be confident, and be you.

At this point, we are thinking it would not bother us if you decided to wear a mohawk, or brush all your hair in your face like vintage Justin Beiber, or dye your hair purple, we'd be fine and proud of you, and we promise to never be embarrassed about it.  We haven't had to test this theory yet, but we're thinking this is how we'd react and how we'd respond.  We do think you are all really, really handsome, which just writing that will probably make you tattoo something across your forehead (should we write this, it might be planting a seed),  pierce something or dye something so just forget we said that and wrote it.  

We won't let you be anything but you.  We won't let you act like something else, or pretend to be someone else.  If you feel strongly about something express your opinion, if you think something is wrong, say it.  Find your niche, your thing, be you.  

Mission #4: Use adversity to strengthen you

Don't let your struggles define you or your failures set you back, learn from them and move on. Failure is a necessary part of succeeding. You have big challenges that you're dealing with right now, and we are in awe of how brave you are, how strong you are, and how you deal with the hardest of things.  The world will sometimes feel very small and your failure will feel very big, but we promise you there's a big, wide world out there for your taking.  You might be upset that someone is mean to you but this is just one person in millions, this is just one small town in millions, one country in hundreds.  If you embrace other cultures, countries, you'll realize how small the views and issues around you are, and realize some things are just temporary, and not the biggest thing happening to someone in the world right now.  Use your struggle to pull yourself up, we'll be right there with you.

Mission #5: Find something that gives you great joy, builds your character and leadership qualities

Try being an athlete, an artist, or a musician.  Seek out things that can showcase your talents, teach you hard work, and to work as a team or an individual.  Find things that teach you about losing and winning, and how both feel.  Be the best you, you can be.  Find things that make your heart flutter, and make nerves in the pit of your stomach as you push yourself outside your comfort zone.  Be a leader even when you're not the Captain or the appointed leader, always act like one.

Seeing that you're only 4, 6, and 9, that's enough of a mission for now.  We love seeing you guys grow, and become these great, little people.  We'll do everything we can to fight for you, now make sure you do your part.

Love,

Your fans, Mom and Dad

  

Is Autism the new "r" word?

I really struggled with writing the title of this blog.  I changed it 5 times. What an awful title for a blog but we need to have a conversation about words.  Recently, I was delayed traveling home in Denver International Airport.  My cell phone battery started to die. In the Denver airport, the charging stations are positioned right near good old fashion pay phones, and they're clustered uncomfortably together, close together.  Little human communities are built as everyone is now using their laptops, phones, reading devices, and everything that feeds off of a battery charge.  I roamed around trying to find an area that was empty so that I could sit alone with my own thoughts, a rare, lovely pleasure for a parent of 3 boys. I sat among girls who went to college together, and felt very uncomfortable sitting on top of their reunion.  As my empty area started to fill up around me, I would get all sorts of different people clustering around the free electricity. Sometimes I would move to another area if it got too crowded.  My phone seemed to be charging really slowly, and I wished for it to charge faster.  A girl walked over and sat about a row away from me.  She might have been in high school or early college.  I'm realizing as I get older that I can no longer tell how old anyone is anymore.  If I think the person is in high school, he or she is likely in college. Nevertheless, a college-high school girl sat about a row away talking loudly on her cell phone, which isn't anything uncommon or special these days but there was no filter on what she was about to say.

Let's pause here.  To give you some context, I grew up in the 80s.  The 80s were fraught with bad hair and really bad catch phrases and buzz words like, "gag me with a spoon" or " that's so gay" or "retard" or "retarded".  Terrible, awful, stupid words.  In my house, my Dad has committed most of his life to working with adults with developmental disabilities or handicaps. I met many Autistic adults back when diagnosis was kind of rare, or at least awareness was a little more rare than today. We were never permitted to say the "r" word, "retard".  Never.  If we said that, we'd be grounded until at least 40, and we'd have no phone privileges.  Frankly, we didn't need those threats.  We went to holiday parties at disability centers and had respect for the folks we met.  We never, ever said these words.  They hurt. I had just recently made peace with the "r" word because it's pretty much everywhere when you're reading anything about Hunter Syndrome, or so I had thought.

Here are the words you read when reading about Hunter Syndrome, and some say you should get used to hearing them and not be offended by them, at all because they are medical terms and symptoms:

Coarse Facial Features
Mental Retardation, X-Linked (in other words to the mother)
Mental Retardation (no reference to X-Linked)
Claw-like hands
Broad nose and flared nostrils
Protruding tongue

some Hunter Syndrome patients also get a spot on the Autism Spectrum due to some symptoms that present with their disease, some anti-social behavior, aggression, developmental delays, and other symptoms consistent with the Autism Spectrum.

Autism Spectrum Disorder

The way I had made peace with these words, and the people who say them was that I realized they don't even begin to define my children and other children who these words are applied to by the medical community and others.  I had decided they, these words don't apply, period.  My children and others have so many gifts, they're people.  They're special.  What have we recently learned in the news about the man who was in a vegetative state for years? He could hear and understand everything around him!  I think you need to work with, or live with a special needs child to really understand that they are in there, they are in that body.  They communicate with their eyes, their facial expressions, their emotions, and many other ways.  If you understood that they are just as human as you and me, you'd probably not use those words to hurt them but instead we're intimidated and we label what we don't understand or think we understand.  My children hear the words you say about them, and trust me sometimes I hear things kids say about my children from other children. I see Alex on a daily basis hear what we are saying but he can't participate easily in the conversation, but he hears, and many times understands what we are saying.  We need to realize that no matter what anyone looks like on the outside they may be understanding you, or hurt by your words.  These are people inside of these bodies with thoughts, interests, talents, loving hearts, etc.  To date I haven't been bothered by these words so when someone says them, I try to say "that isn't who Alex is, and you need to protect special needs kids, they need your help because you can help them."  I recently asked Jack if he was embarrassed by Alex when we were picking him up from school, and Alex was running around and being loud in the school rotunda, he said "no, I am not.  I wish we could see him without special needs though".

Until the Denver Airport, I was never, ever bothered by these words. The girl near my little electric community proceeded to talk very loudly about a person she knew who was having trouble speaking, and he was so weird when he talked that she thought he was "like autistic or something".  What?  It didn't stop there either, when talking about someone else she knew, she said, "it's like he is gay or something." What again?  Cut. It. Out. As many dirty looks as I sent her way, she didn't even notice.  Even my loud huffing sounds drew nothing, no attention. I thought about throwing myself on the ground in front of her but she might have just stepped on me.  I was completely unprepared to deal with the word, "autism" being used in that way.  Is this the new "r" word?  Awareness is wonderful but sometimes this is what happens as a result, society grabs on to a word and twists it not only into a buzz word, but a description or a bucket that someone fits into, and that bucket is a bad bucket to be in.  Sometimes I secretly wish everything was published in Latin so it makes it really hard for people like this to grab on to a word, and use it for bad treatment of others because they can't say it!  Hunter Syndrome is really Mucopolysaccharidosis II, spell check doesn't even know what that is...and you can't really make anything too exciting from it to make fun of it, and it makes you sound intelligent saying a word no one can pronounce.

Now clearly this girl was making an error, and what double stinks is that we didn't get to have any dialogue about it. We can learn from this, we can.  Be the one who says something, wait for her to get off the phone and say something!  I also met a rocket scientist with 55 patents, and a man who worked out a lot and confessed his insecurities to me.  He indicated that he wasn't getting big enough at the gym, and was considering taking steroids.  This is what happens when you have a kind face in the airport! At least that man was potentially saved by some dialogue! I told him he might get bigger, it might attract the ladies he was after, some wouldn't like it, he may rage, and get angry a lot, and I heard his wiener may shrink...and that wouldn't bode well for keeping the ladies around. Just stating the possibilities and facts.

So what's the message here?  Please just take the time to talk to one another about how we talk about each other.  Ask your kids if they know any special needs kids.  Ask them what they think about those kids? Do they help them during the school day?  Or do they make them nervous, and they think they're different?  Have a dialogue about how people should be treated, how everyone should be treated with special needs or without.  It's OK for other kids to experience trial and error here but we really need to start talking about why we use these words about people who are just as human as we are. We can use you and your kids on our team! There are already many, many children and parents on our team, and we need you too!

Thanks for reading!

Amy

Living Next Door to a Special Needs Child

We will be buying a fence, and I'll explain why.  It takes a really special person to live next door to a special needs child.  The person who lives next to a special needs child can be an ally and an angel.  I am lucky enough to have a few of those angels living around me, and even further down the street. These angels look out for our kids as much as we do.  We keep a watchful eye on our kids, it stems from living in Chicago and always being within arms reach of them, and the fact that we're very acutely aware of their special needs. Alex doesn't have the ability to talk, and his hearing is intermittent so it's very important to keep him safe.

One beautiful, summer weekend several years ago, we were all out in our yard working and playing. Dan was cutting the lawn, and I was roaming around the yard keeping an eye on the kids.  Nicholas needed something in the house, so I took him inside to grab what he needed.  Dan was in eye sight of Alex so I was certain he was safe.  When I came back outside, Alex was no where in sight.  I gestured to Dan and he shrugged his shoulders.  I looked everywhere. His usual places and scanned the area by the 70 ft. deep lake by our house, he was no where to be found. I got really scared.  Alex had run over to my neighbors house, opened the back sliding door, walked through her house, up her stairs and climbed into bed like Goldilocks.  The photo below is blurry because he was moving, getting as cozy as possible to settle in for his nap.

My neighbor knew I'd be worried sick, and yelled out to me, "He's in here.'  He was happy, and cozy. What were we all worried about when he was tucked under a blankie ready for a cozy nap? I thanked them, and shuffled Alex back to our yard with a few new gray hairs, and a little bit of a toll taken on my heart.  This was un-chartered territory, and very scary.  We started looking up information about wandering, and how parents with Autistic children help keep them safe.  One additional time Dan went upstairs to put the laundry away, and Alex left our house. He went into another neighbor's garage, and walked in to their house. Dan just couldn't get down stairs and out of the house fast enough.  Our neighbor walked him back hand in hand, and delivered him safely to our door.  We've made modifications and put locks at the tops of our doors.  I know that this could happen with any child, it's just even more meaningful that this is a special needs child.  We do everything we can to ensure all of our children are safe.  We talk to our neighbors about our sons, and their disease.  99.9% of the time we've got them covered, it's just a rare occasion where we need help, our angels are there for us.

A few angels just sold their house, so we'll have new people moving in. Only time will tell if the new people will be angels, but to keep our little angel safe, we'll start with a fence as a little added protection.  Things have gotten much better as Alex is now older but we never forget that he needs extra help because he can't say, "I am Alex. I am lost."  We'll miss our angels next door. These are neighbors who we only lived next to for less than a handful of years, not 10s or 20s of years.  That makes them even extra special that they care so much about our family.  Alex will miss their cozy bed and that he never got to complete that nap.  Wherever their journey leads them, we'll make sure to visit. Thank you angels. We'll miss you angels!

Love, 

The Cherrstrom Family

Rare Personal Finance

Lets get all the disclaimers out really early in this post...the only C in my name is Cherrstrom.  I'm not a Certified Public Accountant (CPA), a Certified Financial Analyst (CFA), or a Certified Financial Planner (CFP)...the only C is my last name, nothing behind. However, I am a person.  I am a person who eats up financial information, who loves investments, loves her own personal finance, loves planning and executing on the plan...and adjusting when the plan doesn't work.  My husband and I play the role of controller and CFO very well.

So don't read this as financial advice on what to do, I am just telling our story of what we did, and what we struggle with and think about today.

Rear-View Mirror  Finance

The moment our sons got diagnosed with Hunter Syndrome, the medical meter started running like a taxi stuck in traffic.  You could just hear the click of the meter, copay, copay, copay, copay, copay, coinsurance, coinsurance, satisfied deductible, out of network, in network, major surgery, major surgery, copay, copay...in the beginning we had one $25 co-pay a week.  It only took a month of that to really sit up and notice something had to change.  You could bring in more money, which is good, or you could lower your costs.  In addition to medical, we had to live a normal life too.  Educate our children, our home wasn't keeping up with the growth of our family, we needed food, clothes, you get the picture.  We took a hard look at ourselves, and thought about how we could stretch or change what our picture looked like at that time.  We made hard decisions.  We cut things, and made major life changes.  Huge.  Moving to a lower cost location.  Seriously, it's public record.  We expanded our living space by 2x, and reduced our mortgage by more than $100,000.  

This is old news. We already covered this change here: http://raisingrareboys.blogspot.com/2014/03/why-we-live-in-cleveland-part-i.html and here: http://raisingrareboys.blogspot.com/2014/03/why-we-live-in-cleveland-part-ii.html

It wasn't an original idea.  I kept seeing people get tired of paying housing costs in say Boston, or San Francisco, and I saw these people relocate to Texas as an example.  I call myself a "Financial Anthropologist".  I love to study people's moves and really figure out what is happening behind the scenes.  For example, if you're wearing Prada every day, I try to figure out whether you're putting that on your credit card or if you're really paying for that...don't be afraid to hang out with me I don't have x-ray vision, and sometimes I am not right but I like to observe, think, and apply.  It's fun!

The word medical also became a regular entry in our family budget. Back then we used Quicken, and I think a really lame spreadsheet.  We looked at our costs, and forecast what we could and put aside for medical expenses.  We also looked at medical spending accounts, and participated for a while but got bogged down with too much activity trying to use the card to get reimbursed or submitting paperwork.  It was too cumbersome and difficult.  The dependent care spending accounts also felt like double dipping, money would come out of your paycheck, you'd pay the daycare, then there would be a lag to reimbursement.  It was just too hard and hurt too much. So we stopped participating.  

We always made saving for retirement a priority, investing, and saving for college.  We started 529B (college savings accounts) at birth for each child. 

We really didn't take many vacations, most were staycations which were really just fine. We never felt penalized.  Never felt like we couldn't do something, that we we're lacking anything.  Never negative feelings of being deprived.  We "invested" lots of money in our kids like good, doting parents. Some were wise investments, and some were just pure unadulterated fun, like Jack's 3 year old bday party, I went a little crazy planning that party! You have to live a little.  We were pretty happy and really elbows deep in making things work.    

Today

I am a crazy, finance app eating machine.  I've tried Mint, eh it was cool for a while but I dropped that after a bit.  I eat up everything I can get my hands on. I use You Need a Budget, http://www.youneedabudget.com/ .  Found this little beauty from a Money Magazine article.  If you use it, you need to take their training, or you may totally mess up your finances.  Take the training, it's good stuff.  I am a tax-maniac, still do my own because when we had an accountant I asked too many questions and irritated everyone.  So I just threw up my hands, and I do them myself.  It's nice because there's nothing like taxes that gets you really close, down and dirty with your money.  You roll around in your adjusted gross income, and know your deductions by heart.  You inspect everything.  It's a nerd's paradise, and I love my independence but it's not for everyone.  

Medical is clear and understandable now.  Occasionally we hit a road bump where we didn't know to plan for something major, like hearing aids, etc., but that's one thing I learned you have to be forgiving.  You're going to make mistakes; bad purchases, not budgeting right, an unforeseen expense, stuff happens and you need to adjust and move on.  Move on quickly too, no sense in wallowing, I don't own a time machine to reverse what was done.  

We do a lot of monthly set it and forget it stuff.  Our boys college funds get a fresh set of dollars every month, we also do a year end, we want you to go to Harvard contribution.

We also gave money like crazy to charity this year.  

We can still improve but we've hit a nice cruising altitude for now.  I hope soon to learn to stop complaining about the grocery bill.  

Looking Forward  

This is the hard part.  The future has the hardest of questions.  

Hard Question 1: Should we even be saving for college?  

Hunter Syndrome carries a death sentence.  Now, there's a lot going on to treat, extend life past the first and second decade, and  improve the quality of life.  Gene therapy is on the near horizon, and could be as close to a cure as we get but it's not in our hands right now.  Medical research requires lots of money, lots of money.  

So should we be pouring our money into college funds, when some psychologists are quick to tell us our son won't go to college, or should we pour our money into medical research?  

We choose college.  The small funds we put into those accounts won't make much of a dent in the medical funds needed to really get research and progress off the ground.  We choose college for now. We also believe that they will go to college.  We believe that in our hearts, brains, and wallets.  So we're backing that for now.  

 Hard Question 2: Should we sacrifice our retirement for their lives?  

We've saved hard for retirement because we've always loved investing.  Large amounts of money are needed to save our boys.  Should we withdraw from our own retirement funds to help save their lives?  Everything and everyone screams no, but why not think about it?  People finance their houses with their retirement funds, fund additions, fund their kids college, why not fund life? 

Are we going to really enjoy being retired if our children have passed away?  I'm thinking no. 

Experienced voices will say, you need to save more, your kids may live with you forever.  For now this is a question, without an answer or an action.  

Hard Question 3: How do we fund raise and do it efficiently and effectively?

I don't want your money.  I want you to give me your money when I sell you something you want like awesome golf apparel, you get something you really want like tickets, you get a chance to win something, you get to participate in a road race or a golf outing, or when you really, really want to give me your money.  I think day and night about how to fund raise.

You may even get a survey from me about some ideas we've been exploring, and are ready to put into motion...and the survey is funny.  There's so much support for local charities, and for local people who come from your community...and we want that type of fund raising.  Did you know that I recently read that golf has poured over $2B into charitable giving, and many funds going to local charities? So that's what we're after, fun and effective at saving kids lives.  Many things require thousands from us personally to set in motion, and I am pretty certain that if an honorary PhD was ever given out for being the Dr. of Party.  I would receive it.  If I started party planning then, all of my financial preaching should be thrown out the door because boy can I throw a great party with lots of money.  That however doesn't work.  I like the idea of venture philanthropy.  I like the idea of offering returns on things, and running fund raising like a business.  We often also try to figure out if we could save as much as an event may yield but it's really beneficial to gain funds that add and grow to our own contributions.  I think we've reached some answers here, and will share more.


Hard Question 4: Do we have everything in order and is there any more we can be doing? 

We never stop asking these questions. They'll never have answers.  We run through the usual list.  Is our life insurance set properly to safeguard our family?  Is there any way to build a better emergency fund?  You get the gist but we regularly question decisions we've made and sometimes we switch directions or stay the course.

So in closing, if you're wearing Prada or afraid to see me at a party, sorry.  In sharing, we hope you benefit in some way. 

Amy 

Mickey, MPS & Magic Moments

Disney

This was our first vacation.  Time off from school and work so we could go to the National MPS Society Family Conference, and extend a few days after to get in some much
needed play time with our kids.  For two of our boys, it was their first plane ride, and first hotel stay not associated with a natural history study or clinical trial.  Our first time at Disney.  We were nervous about the trip, not stressed, but nervous and excited!  We had no idea how the boys, mostly concerned about Alex, would do on the plane, dealing with lines at Disney, walking...just a lot of nervousness.  All that went actually pretty well.  Frontier Airlines was awesome during the peak holiday season, even calling me one of the strongest mothers at the beginning of our trip. Toughest thing was Alex didn't understand why he had to be in his seat with a seat belt on.

We loved the pool at the Yacht Club, and our most favorite park was Epcot.

Jack loves English culture, and his second favorite country is China which you can get a quick glimpse of at Epcot. It was a very crowded, holiday time at Disney but we did our best to navigate and get the kids on as many rides as possible.  Jack's coaster hungry sense of adventure was never fully satisfied, and he kept comparing Disney to Cedar Point in Ohio.

All the kids were adorable, and we really did all we could to ensure they enjoyed their time there. Nick kept telling me, "You're my best friend.  I love you." That was lovely, and a precious moment.

Alex didn't talk for about 2 days which really scared me.  I think he was really overwhelmed with the conference and Disney, and just needed some time to acclimate.  Until he started trying to talk again, I was concerned that maybe his hearing might be gone again due to persistent fluid behind his ears, this is just a fact of life with MPS.

We really enjoyed our holiday time together, and then time at home together.  It was a special, precious time.

The National MPS Society Family Conference

Truth be told, we've had too much happening raising 3 boys, 2 with Hunter Syndrome (several surgeries in the early years) to attend the National MPS Society Family Conference but we made this year a priority to go. The Society is where you turn when you're first diagnosed, they take family support very seriously, and they do it well, trying to give you the comfort and information you need at that time. They are also with many of our families through the triumphs, the setbacks, and when families face the loss of their child or children.  They also are passionate about research and finding treatments and cures.

Baring the full truth, I (Amy) have also been too much of a coward to go.  I knew if I went I would see families and children that would leave a wound on my heart, giving me even more to think about than my current burden. We'd also get a dose of hope too.  It was time to go and embrace these positive, wonderful people!

What I also loved about the conference is the diversity, all walks of life, all socio-economic, all races, all orientations, all represented here which is unfortunate but awesome all at the same time.  Equally humbling was looking into through the lens of how different we all make decisions and choices for our children, I could see in some cases how doctors have to work with many views, and vantage points when working with parents who are advocating for their children.  For example, one parent may not have a tolerance for allergic reactions to treatments, where another parent may and push through the period of time that the child may have an allergic reaction and keep treatment going. Some parents might be looking for less pharmacological solutions for their child's disease, and be seeking more homeopathic or alternative, natural remedies.  It was just really humbling to see how parents cope and make these really, really big decisions for their children, through a lens that only the parent can understand.

For this conference, I felt that it was important that I listen more than I talk, take in this conference in its entirety and observe which is a definite switch for me.  The agenda was well done. I am going to break it up into groupings of messages and information here.

The Encouraging News

MPS II (Hunter Syndrome) Party of 1 or 2?

The Society has this daycare as part of the conference so the parents can attend breakout sessions, etc.  It's called, Camp Courage.  Any child, anyone with MPS or their siblings can attend this daycare.  It's an awesome sight, and the people who staff it are amazing!  I saw one of the guys in the elevator, and he knew Alex well!  These are people who have the calling to work with Special Needs Kids, these are angels who care that much about another person.  I noticed one of the families who were checking in kids to the daycare had lost their brother to MPS II, Hunter Syndrome, our kids disease, still there helping and dedicated to the MPS Society.  So inspiring and brave of them!

What was really interesting at the daycare and throughout the conference was that people could not tell that Nick has Hunter Syndrome!! Wow, that is awesome!!  His early treatment, his involvement in the IT trial is awesome and the results are evident.  So encouraging, the downside is it may not be enough.  I still eventually may lose my best friend to this disease.  All we can take comfort in right now is that we're doing everything that is available for Nick, and so far the results are great! A sigh of relief for now.  I wish the FDA could meet Nick, he speaks volumes for what good medical care, and benefits that approved and trial drugs provide to very sick children.

Also really notable is that Alex's facial features, coarse facial features are common with MPS, are really mild. I had a great conversation in the pool with a Professor of a Nursing Program in Texas about MPS II, Hunter Syndrome.  He was really nice, and had inquired about Alex's condition, and just thought he was likely mildly autistic.  We had a really nice conversation about nursing, home health services, specialty pharmacies, and Alex's prognosis.  He too had no idea Nick had Hunter Syndrome. For Alex though, his challenges from this disease are more than skin deep or the look of his face, you can see the disease in affect to his abilities, you can see it in his hands, and knees, etc. For Alex, he's counting on more breakthroughs. Still though, he's even encouraging as he's in relatively good condition considering this is a deadly disease.

Strong People on the MPS Board, Staff and Researchers Supporting our Diseases

I took tons of notes.  Doctors, Researchers, Pharmaceutical companies all driving forward providing information and direction that as parents we could consume, consider and act upon.  Think you're smart?  Spend time listening to some of the world renown researchers and Doctors who are focused on treating and curing our diseases. You definitely won't feel like the smartest one in the room.  

There are some really strong women working on MPS diseases such as Stephanie Bozarth,Carrie Dunn, and Lisa Todd who I met at the Conference.  Several of them mothers of children affected by MPS.  Polished, smart, articulate, passionate and driven are some of the words that come to mind of these women who are on the MPS Board, and some of the folks working for Shire Pharmaceuticals.  Dede Long, Nina, Carolyn (our adviser - who was not there) and Ann Barbier are stand outs, not to mention others I'm sure I left out mistakenly.  Ann's presentation style was awesome.  She took complex concepts, gave a simple explanation with relatively simple slides on major research and clinical trials underway.  It was like watching someone play a beautiful, piece of classical music but with words.  Ann was a great presentation role model.  

I also think of Melissa Hancock Hogan as the godmother of MPS II.  She received an award for her support of families, medical information/direction and social media efforts and support of the MPS Society, and she talks about it on her blog here: http://www.savingcase.com/index.php/2014/12/20/thoughts-and-thanks-on-the-directors-award/

The women were impressive, and the Dads and men were equally as impressive...volunteering, fundraising, discussing the science of disease, disease management, etc. We learned so much from an Orthepeadic Surgeon, a world renown physician, and an Academic researcher.  Think you're smart, sit with them for a bit.  It takes everyone, all in, to make a difference to move this forward.

Ready to Work but Funding Is Needed

The National Institute of Health funding is key, funding from them is in the millions.  It would be short of a miracle or a phenomena to be able to individually fundraise what government funding of education institutions and researchers is able to provide.  There are a group of Iowa State students who are going to focus on disrupting the disease, there are inexpensive research methods using zebra fish that help move our understanding of these diseases, and their variability, and creating breakthroughs to treat and cure these diseases.  To do these things we need to fund them from the government or from our private fundraisers, we're even talking about as little as $300 USD develops specimen to research.  Small amounts of money move us forward, but large sums and funds support clinical trials, support major steps forward.  

Difficult obstacles to treatments and cures also exist, such as proving efficacy in a variable disease population.  Just looking around the room at the conference, the variability of the disease is just simply astonishing.  Halting the disease in its tracks is a major scientific breakthrough but improving, showing gains is required and is difficult to prove again in the face of variability, testing challenges, and the many challenges our disease presents. 

Gene Therapy is on the horizon but will it come fast enough? Will we be able to overcome some of the obstacles? Only hard work and the support of everyone will get us there.  I can't tell you enough how important it is to give families something they can do to help their children through treatments and eventually cures.  We can't sit idle and watch our children and adults wind down and die, we can't lose our best friends any longer.  We're waging a war against this disease, side stepping land mines, and trying to carry our children out of the battlefield.  It takes nothing short of courage and bravery.

Beautiful Words and Experiences

At the conference we spent time in breakout sessions, each with different focus areas, one might be about managing MPS diseases, one might just be all mothers, fathers, those interested in fundraising, etc.  These are some of the most meaningful experiences to me:

"We're guardian angels for these children." Just let that sink in for a moment, these children were given to us as gifts to love, raise, and protect.  I am not sure if there's anything more moving than looking at yourself as the guardian angel for your child.  

Special stories were shared of how Disney folks made our children feel special just by acknowledging them, such a simple thing, they may not receive from the outside world.  

A remembrance ceremony was held with the parents who have lost children to these diseases it was very tough to participate in, holding a candle, watching a slide show of these children's faces. It was particularly moving to talk to parents from Ohio who had lost their son to Hunter Syndrome. They were so strong. Seeing their faces was beyond moving, their commitment was inspiring...to not expanding the circle of those who have lost.  

A newly diagnosed couple with a son from Chicago.  They looked devastated.  I talked to them, as did others I am sure, I applauded them for coming the first year of the diagnosis.  I assured them they had the best doctors, genetic counselor, and are doing so much already to help their son.  I told them that it felt terrible right now but it was going to be OK.  They were going to be OK.  

Then for 3 days I woke up at 2:00 a.m., and cried.  I haven't cried once until then. That last time I remember crying was when I was pregnant and got stuck in a round-about door at Crate and Barrel, and I smacked into the window as I tried to exit.  Then when I was talking to my neighbor, Kerrie, about my son in the NICU, I think it was Alex.  Then also the time we said bye to Jessica, an awesome caretaker to our kids, I sniffled. Oh and when a friend came over to comfort our family here in Cleveland, reaching out to say you're not alone, I cried.  It's such an infrequent thing for me.   After 17 days for each child in the NICU,a deadly diagnosis, being the unknowing, unwilling carrier of a disease, the hardest of surgeries, weekly treatments, grasping at every piece of information that provides hope and the ongoing battle my kids endure. Keeping a clear head, a positive outlook.  Not one tear shed until then, I even made restaurant reservations for my husband and oldest son while we were at Disney so I could cry.  Dan returned and said your eyes are puffy, you look like you've been crying, thinking it was because I was watching the Sound of Music. He had never seen me in this state before, and not one person in my family really liked it.  They count on me to be the pillar of strength, and when one pillar is down it's hard to hold up the roof.  I am done crying.  I hope. It actually didn't really make me feel any better, and it made me look even worse.  I think it has to do with the length of the battle, just hitting our 4 year mark, and the roller coaster ups and downs, and the tough, tough decisions you have to make.  The longevity of the fight, and seeing some people lose the fight but I hope I am done.    I am done.

And now you're done reading this post, and I hope that you are not crying either. Truth is these kids are worth it, and that should move us all, not to tears but to hope, action, and to soldier on until we win the great battle with this terrible, terrible disease.

Stay Strong,

The Cherrstroms