Riley’s Story…it all began a year ago…

This is the story of my son Riley’s journey so far with NMO. The story began July 31, 2011…this is my facebook post a year later on July 31,2012…

It’s hard to believe that one year ago today it all began. I remember it well…hearing a glass hit the bathroom floor and running in to find Riley off balance, unable to speak, drooling, half of his body paralized. It was terrifying…I remember trying to remain calm as I called 911 and tried to relay what was happening. I remember opening the door for the EMT’s as the ambulance arrived. It was surreal watching the scene as they hooked my then 7 year old son up to all sorts of machines. I can remember what it felt like to watch as the ambulance drove away with my child and husband inside while my then 9 1/2 year old daughter stood by my side and rubbed my back as I started to cry. And so it began…a journey that we could not have imagined…that was the first of 5 attacks. This first attack rectified itself without medication and it was thought to be a type of seizure that happens at night or early morning and would be something that he would likely grow out of. All sorts of tests were booked but life returned to normal…or so we thought. One month later our world was turned upside down…Riley had been tired and occasionally complained of pain but had continued on like a normal 7 year old, was in swimming lessons and playing on the new trampoline in the yard. One night it seemed to worsen and he was up every hour complaining of pain but it was in different areas every time I went in. He said he need to go to the bathroom so we tried to help him sit up and he screamed in agony. He could not sit up but could stand and then he tried to walk and staggered…we knew then it was time to go back to the hospital.

We took him to Royal Columbian where he had been the previous month and he was there for two days. A mystery to the medical staff…he was in excruciating pain and after the two days it was decided that he would be transferred to Children’s Hospital. By the time the EMT’s arrived from Children’s, Riley had screamed in agony for 4 hours, my eyes were almost swollen shut having long since given up trying to hide my tears…Myah was in a playroom down the hall trying to keep busy and Mark was somehow able to speak to the EMT’s. Riley was immediately given morphine for his pain and once he was settled a bit, I watched again as my son left in an ambulance. I don’t know how I made it home that night, but I did. Riley was given a MRI in the middle of the night and Mark phoned me at 5am to say they had found inflammation on his brain and his spinal chord.

When I arrived at Children’s that morning, Riley was in ICU and still in lots of pain. The Neurologist came in shortly after and I remember well the look of concern on his face as he explained the seriousness of the situation to us. He had the kindest eyes and I knew then we were where we were supposed to be and that this man would watch over my son. Dr. Miller would become a constant presence in our journey…even appearing while on days off or vacation to check on Riley whenever we were there. (Sadly Dr. Miller has now moved on to Head of Neurology at Toronto Sick Kids). Riley spent 3 days in ICU and I wondered many times during those 3 days if this was it…if my child was going to make it. His pain was excruciating eventhough he had continuous morphine and several other medications running through him. He didn’t seem to be improving…it was a very scary place to be. A loose diagnosis of Acute Disseminated Encephalomyelitis (ADEM) was suggested after many tests to rule out other possibilities, they started the high dose IV steroids which would treat the inflammation. He gradually started to improve…it was a slow and scary process. He did not move much for 5 days and continued to be in great pain…having episodes where he would just scream. Gradually he started to move his arms and legs and we were moved out of ICU to the Neurosciences ward. The high dose steroid treatment switched to oral after 5 days and another IV treatment (IVIG) was started for four days. Day 9 was the first time sitting in a wheelchair and the first time out of bed and his room in 9 days…at this point we had no idea what the future would hold for Riley. He continued to improve and it was a joy to see small improvements each day. We were released on Day 19, just 2 days before my birthday and we were home. His balance was off a bit, but he was deteremined to leave that hospital on his own two feet and he did. We were amazed by how quickly he improved once we got home…his balance improved incredibly over the next 24 hours.

We had Occupational Therapy and Physio Therapy coming to our home several times a week to work with him. He desperately wanted to return to school but he was still weak and had some bladder urgency issues, but he was determined so I went with him and was in Grade 2 for about 3 weeks. Our school was absolutely incredible and put some things in place to help keep him safe and allow me to leave the building. It was tough for me to leave and I must admit spent most of the first day in tears but it soon became apparent to me that I had several sets of eyes watching over both of my children and that enabled me to be more comfortable leaving them there. Our school became much more than a school…we are blessed to be a part of this amazing school and community and I treasure the friendships that this experience has allowed me to make. We had been told that ADEM was a one time severe attack on the central nervous system and that it was unlikely that it would happen again. We were just getting to that place where we were readjusting to life and starting to relax again and something strange started to happen with his eye. He thought that he had poked himself in the eye with a pencil, but over the next couple of days, he began to lose his vision.

So back to Children’s where it was discovered that his optic nerve was inflamed and that it was, in fact, another attack. The Drs still held to the diagnosis of ADEM but had also mentioned something called Devics Disease (aka Neuromyelitis Optica or NMO). Of course we are always told not to google but honestly as a parent do you think I am going to listen to that advice. When I read about NMO I was amazed at how his symptoms matched that but they also still matched ADEM. It was terrifying to read about this NMO and I hoped that it was still ADEM. Riley had 3 days IV steroids and we were released after day 5…everything that had been affected with the previous brutal attack had remained stable. A month later we thought he had the flu…I had not been well either so we just assumed it was the same thing until his balance became unstable again and his speech very slurred. This was another attack and it was a scary one.

For the second time in this journey I wondered if this was it…if my son would recover. He was in an out of conciousness which was terrifying. High dose steroids again for 5 days followed by 4 days of IVIG. We were released after 10 days and he again amazed us all with his quick recovery. This time we went every four weeks for IVIG infusions…that was for 3 treatments 4 weeks apart. It was at this point in the journey that the diagnosis was changed to Neuromyelitis Optica. This last attack was in November and he went all the way to April without a relapse. The attack in April was the other optic nerve and we were thankful to have caught it earlier this time…he still had his vision but colour vision was gone. Another 5 days of high dose steroids and we have only just weaned off of the steroids as of Wednesday. This is a scary time as his body readjusts to being without the prednisone….we have already had one scare with eye pain that sent us to the hospital two days ago.

We live our life with our hand always hovering over the panic button always watching and checking everything for fear we will miss something. We no longer have the luxury of assuming it is something else. Time is of the essence…early treatment of an attack makes a difference. We are lucky at this point that Riley has very little damage from these 5 attacks but we know enough about NMO to know that this can change in the blink of an eye and that we must always be aware of what is going on with Riley. The statistics are very scary and I pray that he will keep his vision and use of his arms and legs. It has been an incredibly difficult year. I think the hardest part for me has been the realization that this is an incredibly rare disease and it is serious. It is different for everyone so therefore what works for one case may not work for another.

It is scary…there is very little information about the disease and I am constantly reminded of its rarity as I sit in emergency rooms or clinic appointments and explain the disease to Drs and medical staff.

I have learned that I need to be educated to ensure the best possible outcome for my child. I have experienced a feeling of aloneness like I have never known. It would be easy to drown in that, but I made the choice awhile ago that instead of letting all of the feelings I have overcome me that I would use it to do something about this disease that has become a part of our lives. Painful situations bring many challenges…I have found almost all areas of my life have been challenged throughout this year…my faith, my health, my marriage, my friendships…all challenged by a diagnosis. I have had to let go and take the mindset of it is what it is. We never know how people in our lives will react to a situation like this and I have to admit was surprised by those who disappeared from my life and equally surprised by those who emerged to stand by my side. I know the people in my life that I can count on and that will be there for me no matter how this story goes for I do know this, it is far from over. I am blessed by incredible support but longed for someone who really understood and so this led me to a group on facebook that either have NMO or are a Parent or Caregiver to someone with NMO. Through this connection I have been able to connect with other Moms who are fighting for their children and to connect with those fighting NMO firsthand. The knowledge and journies shared on this site are incredible and yes sometimes terribly difficult. My heart ached as I read the journal of a Mom of a young boy…she shared her heartache and her journey…that precious boy lost his battle with NMO at the age of 9 in March. There have been a few others as well that have not made it and it is heartbreaking. Although I have not met these people that I am now so connected to, they are my family, joined together by a common illness. I am blessed to be a part of this family and to have new friends worldwide. At present there is one foundation (The Guthy-Jackson Foundation) that advocates specifically for NMO. This site has been most helpful to me as well. Each year they have a Patient Day in LA where people worldwide gather who have NMO or Parent/Caregiver of someone with NMO and are given the opportunity to talk with each other and the top NMO specialists worldwide. We are blessed to have 3 of these Specialists in Canada…two of them at our UBC Hospital…one of which has been a part of Riley’s journey since his first stay at Children’s.

At this conference in LA, we will get to know and understand what research is being done and if we are closer to finding a cure for NMO. I am excited to be going to LA in October to be a part of this event and look so forward to meeting some of these incredible people that have entered my life. The Guthy-Jackson Foundation was started by a Mom who the same diagnosis that I received for my child. I am coming to realize that although I may only be one person, that I can make a difference.

I recently ran a Half Marathon for NMO…one runner wearing an NMO shirt. Maybe I didn’t make a difference but for me I felt like it was something that I could do and if one person read my shirt and went home and googled NMO, then that is one more person in the know.

That run also gave me a vision…a hope for the future that one day soon that one green shirt will become a sea of green shirts running specifically to raise money for NMO research. It is already in the works and I hope to have the first ever 5km Walk/Run for NMO in 2013. It is time to bring advocacy into Canada. It starts with one thought…one person…one vision and that’s how advocacy begins. I hope I can count on you to join me.

My son Riley has Neuromyelitis Optica, there is no cure and no guarantee that the medications he takes will keep away future attacks. Each medication we give Riley is carefully considered for the list of side effects is huge…we decide on the lesser of two evils really. He is immune suppressed which leaves him vulnerable to other illnesses including certain types of cancer. The prednisone that so beautifully has turned things around for Riley can cause so many issues as well…weight gain, behaviour issues, diabetes, high glucose, high blood pressure, increase eye pressure…the list goes on. If Riley’s attacks stop responding to the prednisone, his next option is chemotheraphy…let’s hope it never gets to that. Do you see why we need to do something to find a cure. This is my child. Many times our days are normal and I forget that this disease has entered our world, but then when I lay my head down at night I think oh my God…he has NMO. This is a serious disease and this is my child. It takes my breath away sometimes and overwhelms me but I try to take that and make it something good…something that will help change the course of NMO and my son’s future.

I do not write this for your sympathy…I want you to understand how serious this is and that I intend to do what I can to help find a cure. I will ask for your help, your support, your prayers and your resources as I move forward to try and make a difference. For now Riley is stable. He is very moody right now as the prednisone works its way out of his body…he hasn’t even been off a week yet. It is funny how I never really liked the whole concept of facebook and now it has become one of my most valuable tools for reaching out, finding support and spreading awareness. I realize that I may post a lot sometimes, but I have a lot of family and friends on here that look for the updates here so I apologize if that is bothersome to any of you. I post jokes because laughter is crucial to getting through something like this and I post quotes that I read that help me hoping that they will help someone else who is going through a tough time. I have become an open book and that has been difficult in many ways but I will never regret that first post that I made to facebook one year ago just after I watched Riley being taken away in an ambulance. The support that came in that day and that has continued to come in throughout this year has been overwhelming. Your comments are precious and many of them are permanently memorized and I draw from them often. To those of you who take the time to make a comment…you will never fully understand how you have changed the course of this year for me. Your comments become a lifeline in the toughest of times and I am forever changed and forever grateful because you decided to be vulnerable and reach out when I asked for your help. I know it is tough sometimes to know what to say and I understand that…I really do…so I had said before that if you read the updates just click the like button so I know you are out there if you want…no pressure. So I guess that is it…those are the reflections from the past year. For many of you this will be the first time you have read the whole journey and for others a reminder of what the last year has held. I know that I could not have made it through this year without your support, love and prayers. Everything happens for a reason and I don’t know why one of my precious children has to have such a rare and serious disease, but I have learned the value of one day at a time. Enjoy the moment….love the people in your life because they are there right now for a reason…that could change in the blink of an eye…don’t waste the time you have. It was hard for me to sleep last night as memories kept flooding over me and I kept hearing things and thinking oh no here we go again, but instead was greeted by a bubbly little 8 year old and his stuffed snakes at 7am this morning. Although the hour was a bit early for me, I couldn’t help but be grateful that eventhough it has been a tough year, today was good…he was good. Moving forward I will do everything I can to make a difference and to raise awareness on behalf of my Riley. This is my child…what would you do if it were yours?

Thank you for supporting us as we continue to believe with all our hearts that there will be a cure for NMO. May you be blessed for all you have done for my family and please know that it works both ways. I am always here for you and will always do my best to be the kind of friend you have been to me over this past year. If you have any questions about NMO, please feel free to ask. If you want to read more about the disease, google Neuromyelitis Optica or Devic’s Disease and a description of it will be available. I am sorry this is so long but lots to get out today….please also excuse any typos or other errors.

All of my love from a grateful heart to all of you xoxoxoxoxo

Since this post, Riley has had another optic nerve attack and was put back on high dose oral steroids for one week and then dropped to a baseline of 5mg every second day. We hope this, in addition to his other medication will be the key to stabalizing him this time.

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