Thank you - Defying the Odds in 2016

Thank you for the great 2016!  Your support keeps us going!  We're hopeful that we are moving into some of the most innovative years of our lives! Without you, we couldn't support the research critical to sustaining our children's lives! We're thankful that you read our blog, donate to our cause, and support our family through your thoughts! Thank you for the best 2016 could bring and Happy New Year to you all!

Warmest Regards, 

The Cherrstrom Family 

For Alex on Your Birthday

Your eyes are beautiful blue pools of pure water like those found on a mountain. Your eyes when you were a baby were striking. There was no sign of your struggle in them.  There was no sign of the battle that raged in your  body. No sign of sadness when you were in the hospital for Christmas after you were born unable to breath. No shock. No signs of strife. Just beautiful, hopeful, innocent pools of blue.

We took our queues from you. Never look back, move on from the struggle. We're past this, never to face a medical struggle again. You could breath. Your surgery was over it was time to live, and live well. Live a happy life with those beautiful beaming blue pools of beauty that radiated out of you. Eyes still so blue and beautiful.

Back then we had the gift of time, when you were diagnosed we thought we had time to help you to save you from what was to come. You were so young. You were two. We focused on making you well but maybe we should have done it all. 6 years later, there are no new treatments available to you. Nothing new. We thought we had time, and in time more would come to help you. So far it hasn't, there isn't a new treatment. In a way this is a bit unexpected for us, we thought you'd have access to a trial or to a new approved treatment. The reality is innovation is moving at the pace of a turtle, and there is nothing new, yet, for a variety of reasons. When you were diagnosed we focused on getting available treatment right away, some proactive surgeries that were really difficult. Maybe though we should have made it our lives' mission to fundraise because there is nothing new to help treat you. You are amazing and you are doing as well as we could hope for, but there might have been more had we known that nothing would be here for you six years later. Every day you show us that you are still there, working to optimize your life and not let us give up. You send us direct and deliberate signals that you are here. What you have access to helps you and sustains you but you need more.

We spent the holidays this year vacillating between being thankful and happy, but sadness that another year passes without a new way to help you. The hardest thing this year was when you celebrated your birthday but then days later seemed to not even know it's Christmas. Could we have worked on a picture schedule?  Yes but it was noticeable that you seemed to not want to engage in presents. You are there and we know it. You are brilliant, and your brain seems not to be effected yet other than being able to produce words, allow you to verbalize your thoughts.  We see your creative ways to make your needs known, and your amazing ability to put a puzzle together in mere seconds.  This year we begin the struggle again with your hearing. We see your skills they are still there, and they are growing. All is not lost yet.  Beyond those pools of blue, you're still there and that is glorious but we need to do our part and even better this year.

Many remark about how great you look but that's only one indicator of how you are still fighting for your life.  Time is still a gift, and time with you is our greatest gift. We must work to make every moment count, and work to help you because you are working so hard to help yourself.

Happy Birthday! Wishes for happiness and the healthiest year ever with more hope and action toward healing you! We love you, and admire every bit of your strength and perseverance. Let's fight even harder this year.  We feel so much love from you our blue-eyed boy! You are the best hugger!

Love,

Your Family

On Your Birthday

Dear Nicholas,

You are fantastic and fabulous! We love the brightness you bring to our lives, and the enrichment you bring to our family. Every day we're inspired by you. You're so young and little but so brave and somehow so tough at such a vulnerable, sweet age. We know that your battles are too much and are starting to take a toll on you. You are never alone. We are always here with you. We know that better treatments or a cure would be so much better than anything you face today. It's hard to face your sadness every week when you find out it's treatment day. We too wish better for you.

The boy who loves his grandma, friends, nurses, teachers and neighbors deserves so much better. It isn't uncommon for you to be sad over the weekend missing one of your friends, your teacher, your bus driver or wondering what he or she is doing at the exact moment you're thinking of the person. You're just so sweet like that and if Nick loves you, you certainly will know it. Your heart is so full of love. Love for everyone. That love will carry you through. We just know it. Someone who loves so deeply cannot always have tragedy or sadness, you can't, not with that much love and hope.

The gift you give all of us is love and hope. This year is your year. We know it will be your best. We have the gift of seeing, hearing, feeling all that you have to give for you still have your skills. We have you. Hunter Syndrome has not taken these things from you. The gift is that we know all of you, and this really is a gift.  We get to know your personality, hear your words and see you flourish. This is the gift you give us; your family, your friends, all who know you.

For now, tell us when you're sad, and let us wipe your tears but spend most of your time like the happy, little boy you have become. Sometimes there isn't enough bacon to make the sadness go away but you always find a way to make us smile. Better will come with time. That is our job to make better come true. This is your year. Have the best one for you.

We love you dearly, sweet Nick, dearly.

Love,

Your Family

Nicholas Bacon

My five year old travels under an alias, an assumed name.  He saves this alias for certain situations when adults ask him what his name is in the hospital or out in the community.  He saves this name for the best of times and the worst of times, and using this name is his little escape from reality.

One beautiful fall afternoon, Nick's bus pulled around our street, and I walk out to meet the bus. The bus driver motions for me to come closer to the bus.  I think, "ut oh, what happened?".  I notice he's a substitute bus driver.

"Sorry we're late", he says.

"Oh no worries.", I reply. "

"Well we're late because Nick told me his name is Nicholas Bacon."

"Oh".  We both erupt in laughter. 

"Your last name is so long and his first name doesn't fit on my sheet of riders." "I had to call the bus garage and ask if there was a "Nicholas Bacon." "To which they replied, no."

I asked Nick if he said his name was Nicholas Bacon. His response, "Yep." Me, "Why did you tell him your name is Nicholas Bacon, you need to tell him your real name"  All I got is a smile and a shrug, and that ended our conversation about the infamous "Nicholas Bacon".

I've had him go with a healthcare professional to get his weight or vitals, and I've had the healthcare professional say to me, "is his name really Bacon?"

Cheers to you "Nicholas Bacon", not related to Kevin Bacon but to Bacon Bacon. Cheers to you.

Bacon Forever,

Amy

"Hi Diya"

Every once and a while in this hectic rare disease life you get to witness someone else being incredibly beautiful. You witness a loving heart, a selfless individual.

One day on the Lurie Children's Hospital shuttle, Nick and I took our regular seats at the front of the bus. The back wheelchair ramp door opened, and we heard a lot of crying and moaning. I also heard a caregiver's voice say, "it's OK "Diya". We're going to get you help. Do you not feel good? It's OK we'll talk to the Doctor. I'll tell the doctor you don't feel good and what's going on". We exchanged smiles as they boarded. The caregiver, I believe was hired to take care of "Diya", and they were on their way to an appointment. The shuttle bus driver helped them take their seats and secure Diya's wheel chair. All while Diya's caregiver was kind and offering to help the driver however she could. I was looking forward but fixated on listening to her talk. She was not stressed at all by a sad patient, or should I say friend, and her glowing energy could be felt all over the bus.

During the very brief shuttle bus trip, Diya's caregiver talked to her the entire way. Sometimes there was laughing, crying or moaning coming from the back of the bus. She opened apps on her phone, Diya's favorite ones, and they sang along. The apps were meant to stimulate speech and interaction. She sang, "Hi Diya, Hi Diya, How are you?  How are you? Now your turn" She talked to Diya and said "see now we can talk, it's nice when we can talk." When Diya starting moaning, she asked her what was hurting her and told her she was going to make sure the doctor helped her. She sang songs about shoes, and always said now your turn. Diya laughed, and forgot her pain for a moment. The songs she sang will never leave my head, they were so happy and hopeful.

I stared forward and my throat started to tighten, and I could feel my eyes tearing up. I held Nick's hand because this was a reminder that even our attitudes effect their health and well being. I will never forget Diya's caregiver, ever. She was a sweet glowing bit of energy, and a reminder that you can love a person, you can love your job and the attitude you choose is the one you exude. Her job wasn't easy and she could have easily been put off by the crying and moaning but a literal glow came from this woman.  Thanks for the lesson that day, for the beautiful songs that will never leave my mind, and for witnessing humanity and the great ability to care so deeply for another being.

My fondest love and admiration,

Amy

Kindergarten Jitters

Our sweet Nicholas (Nick) starts Kindergarten.  Kindergarten. We're nervous and excited but it's nothing like what a typical parent experiences when their child goes off to Kindergarten. This is different.

Nick is beating Hunter Syndrome.  He's beating it. We can't even express how emotional this is for us.  Nick is starting in a classroom without a dedicated aid and special education services. His school has those capabilities but he doesn't need them at this point. Nick is going to be in a classroom with kids he's grown up with, and he's going to learn and grow right alongside those kids. We can't even tell you how inspiring, how moving, how amazing this is...it's like a dream come true. This...this is what brings tears not fear of change, not fear he's growing up too fast, or no one will sit with him on the bus, but this accomplishment brings tears. It's very emotional.

Nick has earned this moment.  It hasn't been easy. He's been through a lot of pain, procedures, worry, treatments, appointments, hundreds of needle sticks, loads of scary things and he has made this moment happen. He has. He has earned every minute of getting a desk, sitting on the carpet, being star of the week, and making friends. This is Nick's moment.

Some professionals (very few but some) will tell you, this is not the right thing to do.  Nick will need a dedicated classroom aid, he will need special services, he will have behavioral issues. Some will read from medical publications and Hunter Syndrome brochures verbatim and tell us and you - he will require and need things that a typical kid doesn't - and we will tell you he doesn't along with other professionals who have worked closely with him. This can be a difficult thing when "norms" are developed, and a community of professionals is learning right along with everyone else. Some young Hunter Syndrome patients are emerging who have started treatment early, have been fortunate to be involved in clinical trials and studies, and are experiencing a completely different journey. Innovation is really enabling individualization of this disease, and the best of professionals understand and accept this fact.

Thank you to everyone who has helped him! His nurses, doctors, family, friends, caregivers,nannies, teachers at daycare, mentors, coaches, neighbors, etc. You have helped form this awesome boy!

If you looked at Nick right now, you wouldn't even know he has Hunter Syndrome unless you saw the scars he bares from the ports implanted in his body.

We know that this disease is a monster, and we'll always need to pay attention and ensure Nick is getting what he needs. This will never, ever be behind us. There's no cure, and there is no treatment that's a one time fix. In our own home, we have a reminder of the differences children with Hunter Syndrome can experience as Alex suffers from it as well.  We cherish this moment now, and hold on to its precious significance because we know it could change in a heartbeat.  

If things change, we won't view this as a set back.  We'll just do what's right, and necessary.

Nick will tell you he is scared of a new classroom, that the bus is scary and he's most excited about making new friends and his new backpack. Nick is experiencing what any kid would experience starting kindergarten but we aren't - we are experiencing something more, something amazing.

We love you Nick. Congratulations on this amazing accomplishment! You are our inspiration, the reason why we carry on with courage.  Enjoy your first day buddy!

With love and admiration,

The Cherrstrom Family

Thankful

Today is International MPS Awareness day!  It's a day we try to drive awareness, raise money, run races, and spread our messages about the impact of Mucopolysaccharidosis (MPS) on children, adults and families. We show you the real, raw details of how this effects our lives every day and how it takes our loved ones away. We ask you to wear purple to honor this day.

Really, is it any different than any other day?

We do this every day of our lives.  Sharing our story, showing our strength, being real about our concerns and trying the very best we can to make MPS a distant memory.  This is every day for us. Reflecting upon this last year, it's really had it's ups and downs and some challenges that looked insurmountable but proved in the end to be something we'd overcome. Something you may not see every day is how you make a difference in our lives and how powerful that really is; on this day let us show you the impact you've had on our lives.

You Follow Everyone

We cannot tell you how elated we are when we go to "like" another MPS family's Facebook page, website, tweet, update, blog, Instragram pic, etc. and we see your name listed there too.  We love when we see you've commented on someone else's page.  It warms our hearts to see you support not only us but the whole MPS community.  I know it means a lot to everyone.  Your support is powerful and meaningful to all of us. You never know when the person on the other end needs that boost or support. What you do may mean the world to them. Thank you for your support.

I look at our blog analytics often and it's really amazing how many people support us. I can also tell you that 1 "like" really means hundreds of people have seen your post, read it, or viewed your video. Those supporters may not feel comfortable liking it or weighing in on it, and some do. No matter what, these stories are reaching a lot of people.

We're so appreciative for this small, tight circle that keeps us going every day.

Your Words are Meaningful

The most moving thing about having a global community support us is what you say. Sometimes we are certain you don't know what to say because you just couldn't fathom what it's like to have MPS.  I think sometimes you are very intuitive about when we need support and when we don't. I (Amy) am personally moved by emails I get, texts or messages telling me that I am a good mother, I am so positive, I always find the silver lining, my strength is inspiring, I am so funny, people are lucky to have me, etc. I am not fishing for these comments.  I am being myself. I wish everyone could get this much encouragement in their own lives. People tell Dan he's an amazing Dad.  It's really a surreal situation. I truly believe you'd do the same given this situation.

You've Taken Action

We know how hard it is to give these days. Living is costly, making more is rare and still you find some funds to send our way or to another MPS fundraiser. Today I was sitting in our kitchen thinking of every person who donated to us. Friends, family, fro-workers (Friend Coworkers), teachers literally someone from many facets of our lives.  We cherish everything you send our way. Gene Therapy has to happen. The mountain of money, commitment, bravery, and support it's going to take to see it come to fruition is intimidating to say the least. It's going to take a cast iron stomach and the wallet of the world to make it happen.  It's possible though, and it's potential effects even more motivating and positive.  So that's all that matters.  Without fund raising and your support this wouldn't even be possible. Thank you. We've been coached before to not talk about the cost of things and exacerbate the money as an obstacle. The truth is...it is an obstacle.  One that needs focus to overcome. Ask yourself how much would you spend to save your life or the life of a loved one?

You've personally supported the National MPS Society, Raising Rare Boys, The Hunter Syndrome Foundation, or one of the other fundraising projects the other MPS families have launched.  Thank you so much.

You've colored for us. So many of you have sent us pictures for our kids and we love them!  They're a bright spot in our day and a visual show of support.

There are still so many of you who do not know how to help and there are many of you who want to do more. This year we'll do more but please know what you've done so far is amazing.

On this day of awareness, we want to sincerely thank you for being aware, for being with us, for helping us and being so committed to our family.

The Cherrstroms

Motherhood

Being a mother brings me the greatest joy.

I always wanted to be a mother.  I didn't rush into it.  This is a very, very individual choice.  I went to college, made deep friendships, cultivated a career, married my husband, and had a ton of fun.  I breathed in my life, and lived it fully.  Then I became a mother and had even more fun.  No kidding. I honestly feel like being a mother has brought me the greatest joy in my life.

I love being a mother.  I love finding the best in you or figuring out how to know you better than you know you. I'll show you your innate abilities, your gifts, your heart, your mind and how wonderful it all is.  You're here for a purpose, and it's a fun road to self discovery.

I love being a mother because it shows me how imperfect I am. Being a mother shows me how ridiculous I can be, what I am bad at, and clarifies what really matters.  I really could care less if my bed is ever, ever made.  Who cares!!!  Sometimes as a mother I am tired, snippy or chronically messy looking. I feel like I have 3 looks, preheat, warm, or hot (like an oven) and all 3 take a lot of work. Being a mother makes me search to find my looks and my own personality on a regular basis.

Being a mother has taught me what I really want to work hard for and what I want to be slightly lazy about...like I don't want to pick out my own clothes anymore.  I want a service to decide what I am wearing every day, and dress me based on Big Data, questionnaires algorithms, and a great stylist armed with all of that data.  I also want to eat like a robot but I want it to taste really good.  I want meals that I don't prepare myself and that keep my body extremely fit.  Motherhood helps you know what you want and what you don't want.  I don't want clothes with stains or to be embarrassed in the super market because I am wearing yesterday's makeup because yesterday was a good day. Motherhood really helps you own failure and embrace it. Motherhood knows how to make you feel really insecure and also feel really confident, and sometimes you're inse-confident.  Motherhood helps you be both an extrovert and an introvert maybe even in the same hour.  Sometimes you're too direct and sometimes not direct enough.

I used to be the mother who would read how to make you the "happiest" kid on the block but now I strive for one of the happy kids on the block.

Motherhood will embarrass you like the time I picked you up from daycare and couldn't tell which one was you because you were in a different outfit, but I love you! By my second child, I would walk into your room and scream out your name and look for the one who smiled or kicked. Or when you were waving to me on the baseball field just last week and I didn't know that was you (everyone is wearing the same thing and a hat), and someone else asked me if that was my kid and I said where? Most importantly I was there and you knew it.  Motherhood keeps you humble and can make the smartest person look dumb, and the dumbest person look smart.

If Motherhood was a house, it might have nice curb appeal, tidy bushes but the house might be burning down on the inside. Sometimes the house is untidy on the outside, shutters falling down, in need of paint, but on the inside it's beautiful, and on the fortunate occasion it's both.

Being a mother has taught me about emotions that I didn't even know existed.  I can give the best hugs.  Sometimes I think I feel your feelings for you. With the burden of Hunter Syndrome, I am alongside you. Sometimes I carry more fear than you do, more understanding than you do, and some of your pain.  I cry when really disappointed or frustrated but I am smiling most of the time.  Motherhood has taught me what being brokenhearted is, what the greatest joy is, how to worry, and when not to worry.  Most of all it's taught me about me. Motherhood has brought about a sense of peace and calm. No matter what happens in the world, I am always a Mother.

Motherhood means I'm a good listener. It means I can hear things even when I am not supposed to... It also means you melt my heart when you say, " I love you sweetie". Motherhood has taught me that your brother communicates deepest love, his feelings, and grievances without words.  Motherhood has taught me to connect our hearts and minds where words are absent.

Motherhood means you're never alone even when you want to be alone.  Motherhood teaches you you're not the only one but sometimes you can't see the others. Motherhood sometimes comes with loneliness, and sometimes you feel you're in a crowd of moms.

I also love being a mother because it shows me how amazing I can be, how unique I am. You're raising a person.  When Motherhood shows you your successes you revel in them, and when we're all happy and relatively healthy it's comforting. Motherhood has allowed me to experience caring deeply for another, nourishing, protecting, sometimes letting go, and making decisions that greatly impact another's life.

Motherhood is giving you everything, giving you nothing, and sometimes making you understand how to work for something.  Motherhood is about teaching gratitude.

Motherhood has taught me I can do so much but I always feel like I am doing so little, or doing the right thing one moment and the wrong thing the next.

Motherhood is physical.  It's balancing your inner "Helga" with your outer "Holly Golightly". I love running after you.  I love running along side you. I will always remember running with you. Motherhood has taught me that you can break up an unfair wrestling match in the living room but you might burn the bacon in the process.  I no longer wear heels when I am with you but look forward to that rare date night when I can.  I used to have really awesome shoes. I miss them.

We're all making this up.  Motherhood.  Fatherhood,  Parenthood.  No one really knows what they're doing but the good ones are doing the best they can.

Mother's Day is just that, a celebration of people who are doing the best they can! I love you boys! I love your giggles. I just love you! Thank you for giving me the gift of motherhood.

Happy Mother's Day!

Your Mom,

Amy

The ER & Mindfulness

The Emergency Room

No one ever expects a visit to the Emergency Room (ER).  A few weeks ago Nicholas, our five year old, was having a typical day recovering from a complication from recent surgery.  Recovery was going well then suddenly it wasn't and we had to rush off to the ER. Not even the one in our local town, an ER 6 hours away.

I grabbed a few outfits for myself, and 5 outfits for Nicholas.  We jumped in the car and headed off for our journey.  When we arrived at the ER, they were ready for us and rushed us into the back very quickly.  If you've never been in an ER during cold and flu season, it's extremely scary.  People are very, very sick.  As we were checking in with triage, a young boy vomited at our feet.  Nick and I wore masks during the 5-7 minutes that we were standing in the waiting room, and we continued to wear them every time we stepped out into the hallway in the hospital.  This was big deal for Nick.  He would rarely wear a mask but after what we saw in the waiting room, he personally asked for a mask.  I very clearly saw why hospitals have flu policies. It was a war zone.

There is also a lot of screaming in the ER.  Some of it was coming from our room as Nick had to have stitches in his back.  Despite all the attempts to relieve his pain, there was still a lot of screaming.  So much so that the ER Manager came in and quizzed us on what pain relief and anxiety medicines had been chosen. After all of that, the Dr. told me to prepare for surgery tomorrow.  That there was about a 95% chance that he'd have surgery.  The team started infection protocol.

What We won't Tell You on Hospitals Surveys & Mindfullness

My children collectively have been in the "meningitis" protocol 3 times, and I have never understood it.  It's also never been explained well by anyone at the hospital.  So I found this from the National Institute for Health and Care Excellence (NICE): https://www.nice.org.uk/guidance/cg102/chapter/1-Guidance

That website was able to alleviate my mind from the constant strain of what are they doing, and why they don't take him off high dose antibiotics even though cultures continue to show no signs of meningitis, and how long can these protocols take!  It gave me a window in to some of the decisions they were making and how they were opting for a more conservative approach.  When I asked for guidance, all I got is there is a "high risk of infection".  That's not good enough for me.  Always, there should always be hand outs or a discussion.  This is the same scenario I've had with respiratory protocol wondering when we ever exit the different phases of that protocol as well. One might think this is specific to a hospital and how they communicate but so far this has been every hospital.  I want our doctors to tell us their concerns, what they're watching for, the different twists and turns this could take.  I want you to tell me so much that it makes you nervous that you may be saying too much.  That is the point that I'll be satisfied as a parent.  I'm on your team but I need to have more information.  Hand me some sort of detail like the above or ask me how I want to be communicated with, it will go a long way.  Why don't I suggest this in hospital surveys?  It's because it's not about the individual providing the care, it's more a systemic issue (legal, policy, physician training,etc.).

With that information in tow, we settled into our room for who knows how long.  The good news is that surgery never came and never had to happen, and that's because of the brilliant hands and minds of these physicians.  With a lot of sitting in the hospital room, I looked for something to read but only had my phone.  I downloaded Mindfulness, 25th Anniversary Edition, by Ellen J. Langer.  This book really helped me to stay open to the process in the hospital.  It helped alleviate the tension I feel in my chest wondering when we would be released when Nick is showing signs of wellness.  It helped me surrender to the experience, and be open to what was happening around us.  Nick and I also were so at ease that we giggled a lot and had tons of fun with the CNAs and Nurses at every shift change. Every day I really didn't know what day it was because I wasn't paying attention to time, just the task at hand, getting better.

When it came to release day, we were leaving with quite a bit to do at home.  Lots of care giving and medicine administration to follow, sometimes nurses or doctors believe parents can't do what they do or shouldn't.  Others have tremendous respect for you, the partnership of parents and medical staff and will help you in caring for your own child.  I encountered both perspectives.  In Mindfulness, there was a section that I'll paraphrase that suggests that you can undermine someone's ability causing them to question it, or even lose their confidence or ability completely.  I think in the hospital environment it's tough.  I am sure you see a lot of things that scare you.  I ask though, please stop questioning or undermining a parent's confidence.  Release the parent and the patient in the best condition possible, please!  I cannot tell you how many times I have heard, "better safe than sorry" to intimidate me into doing something the nurse or physician wants to do. I have never once been sorry, and never have I felt my child is safer because you chose what you wanted to do.  Sometimes you ignore my voice, and it's as difficult as when someone ignores yours.  During our recent stay, I explained that it was more important for me to get on the road and head home to administer timed medicines at 1am than clean the site that wasn't due for cleaning for 2 days, and change a cap that I was going to change when I got home.  Despite my voice, the nurse still felt it was "better safe than sorry", and couldn't believe that a parent could take care of a central line when hospitals are taught how scary and critical these lines are.  I gave you confidence when I told you that I could help you if you accidentally pulled the needle out but you still ignored me.  You set the open saline syringe on the bed, and made other errors but being a veteran rare disease parent I see errors all the time.  Your own anxiety and fear can create some of these errors. You are human, and so am I.  Therefore we should both leave with our confidence in tact always.

Dr. Langer's book continues to help me with so much good advice about the rare disease, being an even better worker, and remembering to try and be mindful in my daily life.  As for Nick, he continues to recover well, and we're so thankful for that and for those who are brilliant in their professions.  One nurse even fashioned some clothes out of mesh so Nick could make it through the night with dry clothes! Just amazing!  I think some of the giggling and fun we had with the staff was some of the best medicine!  I really believe some sort of Mindfulness immersion in the hospital for care givers, parents and staff may be beneficial for all.

XO,
The Cherrstroms

Do you still have Hunter Syndrome?

Nicholas

Do you still have Hunter Syndrome? Are you still sick?

Dan and I often think about how well Nicholas is doing.  You wouldn't even know that he has Hunter Syndrome.  He's making every developmental milestone. He has friends.  He generally looks well, only a slight bossing of his forehead.  Very mild facial features are mild signs we see that he still has Hunter Syndrome.  I now understand why people might go off their medication thinking that they are fine, only to find that the medicine was sustaining their wellness.  We often think, as parents, do you still have Hunter Syndrome?  This is the experience we wish we were having with Alex and we wish others could have where you feel that things are going as well as they possibly could and your son is OK for now.  Do you know how thankful we are for this - for his life- for access to medicine and for the ability to help our son?

During last week's clinical trial visit, Nicholas said to me, "Mom, why do I have to go to the hospital? Why do I have to take medicine?"  This is a question we field every week with his weekly infusions where he screams with every stick of the needle, and monthly when he goes to his clinical trial visit for dosing. For now, he suffers the weekly and monthly trauma of keeping him well.  He describes his monthly doses as times where he gets dizzy from oral sedation, and when someone pushes water into his back. He is starting to ask these hard questions, and is so intelligent it's getting more and more difficult to try and shield him from the things he has to do to keep him alive and well.  It's a real struggle we're living but it's one we're happy to struggle with because he is alive, he is well, and he is going to have an amazing life.  This is what everyone deserves.

He dreams of being a Chef, or a Chef and a Fire Fighter, or being a contractor and fixing and building things. He has dreams of his future, and it looks possible at this point, achievable.  He wants to be a doctor. He is taking in everything around him with the optimism of a child.

Nicholas is the new generation of Hunter Syndrome kids.  This was his hard fought battle.  His infant months were hard, and full of procedures that none of us would want to face.  That feeling of defeat when our genetic counselor called and said Nicholas has Hunter Syndrome too is forgotten for now.  He is winning, and it is a result of his hard work. It's a result of his will, It's a result of medicine, both the medicine he takes, and a result of the people who provide him with care, It's the result of being proactive and knowing what to do.  It's the source of our optimism.  It provides our drive to do more, push toward a cure, bring gene therapy and more treatments to see the light of day.  We need more people to work harder to bring these treatments to light more quickly, as early as possible for all those who suffer from awful diseases. That hard work has to be supported with research funds, with broad awareness, with people choosing these professions, choosing to do the right thing for others. You can see the results.  We have evidence and proof that a person has his life back and his family is beyond grateful for that, and when he achieves his dreams the rest of the world will be grateful as well.

Alex

In celebration of World Rare Disease Day, let's bring these lives to light and get more wins for others who suffer without possibilities.  Let' s win more, and lose less.  Let's do this for Alex so he can have the same dreams, and conversations that we have with Nicholas.
         

The Cherrstrom Family

http://myunplannedson.com/2016/02/29/world-rare-disease-day-rarewriter-blog-linkup/

Birthdays

It was his birthday too. Icy. 
Post ball play pic in the snow.
He looks so annoyed!

Yesterday was my 2nd birthday in my 4th decade (trying to say it fancy so I don't have to say the number)! It was a wonderful day filled with delicious food from a Cleveland gem, The West Side Market, prepared by my skillful and handsome husband.  My family surrounded me with love and the kids couldn't have been cuter although they were very loud. Feeling like things and people are loud comes with age. When you have a birthday the day before Valentine's Day, you have to plan months in advance or you're going to end up with a red, heart shaped cake, and forget about going to a restaurant. (I've been bitter about this for years!  ha! ha!) We just bopped into the West Side Market and got it done! My at home dinner was the perfect way to mend my cold I picked up from our recent clinical trail visit.  The only complaint I have is I was a little offended by the weather, and the fact that the earth froze over to some of the coldest temperatures of the season.  What is this, the celebration of the ice queen or some icy bitch? What do I expect, I was born in February after all!  My favorite part is all the wishes from my friends and family, they're heartfelt and lovely. They mean everything to me.  I am so grateful!

My birthday always reminds me of a conversation I had with a doctor who was part of the practice that delivered my sons when they were born.  Alex was just born and it was December.  He was transported by the transport team to another hospital because he couldn't breath and was very sick at birth.  Unexpectedly sick.  I think even my doctors were surprised that they couldn't anticipate this, and why it happened, we'd come to find out later why it happened. Hunter Syndrome was just making its initial appearance.  I remember talking to them about him being full term, of good weight, and I think it really surprised them and disappointed them as well.

So together, we sat there surprised, maybe shocked, and sad.  It was Christmas Day, and the Doctor pulled a chair up to my bedside to talk to me.  I was quite sad, and tired.  I missed my infant son who was alone at another hospital.  Dan would go back and forth and many times I said "just stay there with him, I am fine."  The Doctor sat by my side and said, "Amy, you are young and healthy. You'll feel better if you get out of here and go to your baby's bedside.  I want to tell you the best is yet to come.  You're young. You're going to have the best years of your life ahead. " This just made me cry because I didn't feel that hopeful, it was a tough situation and I was exhausted.  After all, I had just had a baby.  He continued, " I ran my fastest marathon in my 40s.  I was in the best shape of my life. I had the best times in my career.  Life in your 40s is amazing, just wait."  Then he released me, and let me go to my son's bedside because he thought this was the best medicine for me, to mend my broken heart.  That is a great Doctor!  Sometimes you don't realize the moments and the things that people say to you in those times that will stick with you forever.

I always remember this now that my birthdays in my 40s are piling up.  These are meant to be the best years, and I am going to cherish every single one!

Thank you for the birthday wishes, and for being a part of our lives.  Happy Valentine's Day!

Love always,

Amy
The Ice Queen

The Defender of Mankind

When we were picking a baby name for Alex (Alexander), Dan really wanted to name him Jace, but a Jack and Jace were just too close.  We kept reading the baby name books looking for the right name to hit us.  I can't even think of a better name for Alex than the "Defender of Mankind" the meaning of the name Alexander. It gets even better.  His middle name means "Healer".

Little did we know, he would do just those things for his youngest brother, Nicholas.  He has defended him from the strife of MPS II, Hunter Syndrome.  Alex was the first to be diagnosed and that has really saved Nicholas. Alex, through his own suffering, has taught us how to save Nicholas. Alex is one of the strongest children I have ever seen.  He's mentally strong and just as strong physically if not more so.  He really is built like the "Defender of Mankind".

All of us having been working really hard to save him from this terrible disease.  Not a day goes by that we don't try to figure out how to help Alex.  There's a gap were trying to fill and it's from now until this date.

September 2017

This is the estimated completion date of the Clinical Trial that Nicholas is involved in, getting medicine into the Central Nervous System of children with Hunter Syndrome.  September.  That seems so far away.  It's with great disappointment that I read the year 2017.  I was so hopeful that this trial could get approved in 2016, and there would be less of a gap to fill until Alex could get the medicine that is helping save and stabilize his brother.  Since I can't personally move or influence the date, we are just going to focus on what we can do as a family, as teachers, as therapists, and Doctors to help keep Alex doing as well as possible. 

We're filling the time with therapy, seeing specialists locally, repairing existing damage to his body by scheduling surgeries this summer, and filling him with love, and hope, and telling him he is still here, he is still in his body and we can still defeat this.  Alex can still have a good life, and he can still get better if his brain and central nervous system get some help through medicine.  

While we wait out this time, we took Alex to hyperbaric oxygen therapy.  This showed some promising results that we are so very, very thankful for and for people who support us and keep telling us about things that can help us such as the oxygen therapy, such as nutrition, such as things that help cancer patients, those with Autism and others.  

We are also filling this time with love, and fun, and happiness because that is what any "Defender of Mankind" deserves.  

The Cherrstroms