Dear Emmersyn,
I have never been an optimist, but I would not consider myself a pessimist either. I have always been a realist. The glass is neither half full nor half empty, but instead in reality, it's just half of a glass. Being a realist has not been a blessing however when it comes to your diagnosis. The delusional state of optimism seems so warm and inviting, but it is so hard to fight my realist thoughts. The reality is that you have an incurable and progressive disorder that will forever be part of our lives, and some days, the sheer magnitude of this reality is suffocating. I have struggled with looking at the bright side and finding the blessings in the diagnosis still over 2 years later.
A few weeks ago we had an unusual rain storm in February. As you will learn, it is rare for it to rain in February in Wyoming. It was a brief down pour made more intrusive by the 60mph wind driving the rain drops against your face in temperatures near 40 degrees. I pulled into the preschool, and watched several other parents hurrying inside and scurrying back to their vehicles with their toddlers in tow. I pulled my jacket up over my head and sprinted into the school. We gathered your belongings and started out the door. I paused briefly before exiting the building, making sure your jacket was zipped and your hood was up, and our eyes met. Your face lit up when you noticed the rain. A few steps out into the wind and rain and you stopped in your tracks, started giggling and shrieking, and dancing around. The wind was blowing your hair, the raindrops were running down your face, and pure joy was emanating from your smile. We took a moment and danced in the rain together as the other parents hurried past with quizzical looks on their faces.
In that moment, you showed me what I have been searching for since your diagnosis. You showed me that the reality of your joy, your innocence, your love, and your character are stronger than the reality of your diagnosis. Your joy is pure and contagious. You innocence in unadulterated by pessimism. Your love is deep and endless. And Your character is timeless, strong, and one of a kind. You have this uncanny ability to find the beauty in the moments that others find uncomfortable. And for that moment, I was able to find a small sense of peace. Peace that you will "be OK" despite your diagnosis. Peace with being a realist, with being who I have always been. It is OK to not always be optimistic, but instead live with the knowledge that some realities are stronger than others. Life is not about waiting for the storm to pass, its about learning to dance in the rain........even the cold, blowing, freezing February freak rainstorm.
Love Always,
Mommy
Friday, February 26, 2016
Thursday, December 31, 2015
15 lessons learned in 2015
Dear Emmersyn,
It has been so long since I wrote to you. Not because I haven't had anything to say, but more due to lack of words. You have been through so much this past year that much of it has left me speechless (and you will come to learn that I am rarely speechless). I wont rehash the details of 2015 because that is not my purpose with this post. This has been one of the most challenging years of my life, for many reasons, but also a year of significant spiritual, emotional, and mental growth. We have learned so much this year; about NF, about you, about life.
When I began writing to you, I did so with the hope that someday when you were grown, you could read these letters and better understand your journey with NF (and also as a way to put my thoughts and emotions into writing for my own mental health). I wanted to keep the overall tone of these letters hopeful and not fill you with despair (and not succumb to my own despair). But there have been many things this past year that have made it hard to remain hopeful. So here is a list of things we have learned in 2015.
1). The Doctors don't have all the answers. This is a frightening statement. It is terribly painful to hear repeatedly from doctors, that they do not understand your symptoms. You are an enigma, and that is terrifying. We have had to learn patience with your medical team, and we have learned to push for more when necessary. We have learned to find medical professionals that we trust, and not be afraid to seek a 2nd opinion (or even a 3rd opinion).
2). Trust your instincts. If something doesn't feel right, it probably isn't. Never let someone tell you otherwise, even if they have a medical degree or call you family.
3). Find a Passion for a cause near and dear to your heart. This has been NF research funding for me, for obvious reasons. Everyone needs a cause and a passion. Never apologize for your passion and never back away from your cause. There will always be critics out there, and you are bound to lose a few friends along the way, but never let that sway you. Not everyone will share your passion and that is OK. But be Supportive of other causes as well, and you are bound to make new friends.
4). Everyone has struggles. Your struggles may seem more significant to you, but even as small as someone else's struggles seem to you, they may feel just as significant as your struggles to that person. Always be kind and never let your struggles harden you.
5). Things can always get worse. Just when you think you have been through the worst and couldn't handle anything else, life throws you a curveball. Sometimes this fact is terrifying, and I have spent many nights wide awake dreading upcoming proceedures or appointments for this very reason. However, this year, (maybe for my own sanity) I have learned that this is the very reason that we must live in the moment. You will never get this day back. If it is a good day, live it to the fullest. If it is a bad day, take comfort in knowing that it wont last forever.
6). Quality of life is one of the most valuable measurements. As a medical provider, I have had this conversation with many elderly and terminally ill patients. But this year, Quality of Life was brought up on multiple occasions from your doctors. I never imagined I would be having this discussion about my toddler. Not that you have a terminal illness, but when it comes to pain medications, physical therapy, and surgeries, we have come to look at how it will effect your quality of life and functionality to see if it is worth putting you through. We have had to let go of some preconceived notions about how parenting is meant to be, and prejudices against pain medications. As hard as it is to keep you on chronic pain meds, it is harder to think of your quality of life without them.
7). You never know how strong you can be until being strong is the only choice you have. Its funny to think how 2 years ago the thought of having a child diagnosed with a brain tumor was one of the most terrifying thoughts. Today, this does not seem as terrifying. Life goes on. SO you have brain Tumors, and yeah that sucks, but you are still a 3 year old girl full of life and energy. Many people tell us, " you are so strong". Are we really that strong? DO we really have another choice?
8). You cannot control everything. Life is unpredictable, and no degree of planning can help control any outcome. You must let go of the idea that you are ever in control of anything other than yourself.
9). Some people cannot handle being part of your life. We have noticed that our social circles have slowly dwindled in size. Many people (even people that we never imagined would leave) have just disappeared this last year. Family and friends sometimes do not know how to be there for you, and to avoid the awkwardness, they just avoid you. Learn to forgive these people (something I am still working on myself). Learn who you can rely on and who will always be there to support you and hold on to these people for they will be your life line.
10). Surround yourself with people on the same mission as you. I have searched for support and understanding following your diagnosis. It was not until finding the Children's Tumor Foundation and organizing charity fundraising events to help fund NF research, that I found where I belonged and could be understood. This has been so valuable to my healing and coping process.
11). It is OK to fall apart. You cannot hold everything together all the time. Falling apart does not make you weak; it makes you human.
12). Just Breath. Sometimes when life becomes so overwhelming and it feels like everything that could possibly go wrong is going wrong, just breath. There is a peace found in slow steady breaths. It slows your heart rate and calms your mind. When you are paralyzed in fear, overcome with joy, or fighting off anxiety, just breath.
13). Nothing is certain in life except change. Change is inevitable; remain flexible. Change is scary, but can also be liberating. You have to learn to embrace changes in life, and be ready to make necessary changes if you are feeling stuck.
14). Embrace the small things in life. There is nothing that makes you appreciate the smaller things in life quite like being faced with enormous medical challenges. I have learned to embrace every bedtime story snuggle, Christmas program, dance class, etc. Life can get over scheduled, and it is easy to fall into the daily grind of getting from one place to another. Slow down and truly enjoy the little moments in life, for in the end, life is just the compilation of series of small moments.
15). Choose Joy. Happiness is always a choice. Sometimes circumstances just plain stink. While you cannot control your circumstances nor what happens to you, you can always control your response. It is not always easy, but it is the best choice you will ever make.
So as we look back on 2015, we will not focus on the struggles we had throughout the year. But, instead, we will focus on the lessons we learned with an open heart and open mind. We are hopeful heading into 2016, and we are dedicated to making 2016 a fabulous year despite what we might be faced with.
Love you Always
Mommy
It has been so long since I wrote to you. Not because I haven't had anything to say, but more due to lack of words. You have been through so much this past year that much of it has left me speechless (and you will come to learn that I am rarely speechless). I wont rehash the details of 2015 because that is not my purpose with this post. This has been one of the most challenging years of my life, for many reasons, but also a year of significant spiritual, emotional, and mental growth. We have learned so much this year; about NF, about you, about life.
When I began writing to you, I did so with the hope that someday when you were grown, you could read these letters and better understand your journey with NF (and also as a way to put my thoughts and emotions into writing for my own mental health). I wanted to keep the overall tone of these letters hopeful and not fill you with despair (and not succumb to my own despair). But there have been many things this past year that have made it hard to remain hopeful. So here is a list of things we have learned in 2015.
1). The Doctors don't have all the answers. This is a frightening statement. It is terribly painful to hear repeatedly from doctors, that they do not understand your symptoms. You are an enigma, and that is terrifying. We have had to learn patience with your medical team, and we have learned to push for more when necessary. We have learned to find medical professionals that we trust, and not be afraid to seek a 2nd opinion (or even a 3rd opinion).
2). Trust your instincts. If something doesn't feel right, it probably isn't. Never let someone tell you otherwise, even if they have a medical degree or call you family.
3). Find a Passion for a cause near and dear to your heart. This has been NF research funding for me, for obvious reasons. Everyone needs a cause and a passion. Never apologize for your passion and never back away from your cause. There will always be critics out there, and you are bound to lose a few friends along the way, but never let that sway you. Not everyone will share your passion and that is OK. But be Supportive of other causes as well, and you are bound to make new friends.
4). Everyone has struggles. Your struggles may seem more significant to you, but even as small as someone else's struggles seem to you, they may feel just as significant as your struggles to that person. Always be kind and never let your struggles harden you.
5). Things can always get worse. Just when you think you have been through the worst and couldn't handle anything else, life throws you a curveball. Sometimes this fact is terrifying, and I have spent many nights wide awake dreading upcoming proceedures or appointments for this very reason. However, this year, (maybe for my own sanity) I have learned that this is the very reason that we must live in the moment. You will never get this day back. If it is a good day, live it to the fullest. If it is a bad day, take comfort in knowing that it wont last forever.
6). Quality of life is one of the most valuable measurements. As a medical provider, I have had this conversation with many elderly and terminally ill patients. But this year, Quality of Life was brought up on multiple occasions from your doctors. I never imagined I would be having this discussion about my toddler. Not that you have a terminal illness, but when it comes to pain medications, physical therapy, and surgeries, we have come to look at how it will effect your quality of life and functionality to see if it is worth putting you through. We have had to let go of some preconceived notions about how parenting is meant to be, and prejudices against pain medications. As hard as it is to keep you on chronic pain meds, it is harder to think of your quality of life without them.
7). You never know how strong you can be until being strong is the only choice you have. Its funny to think how 2 years ago the thought of having a child diagnosed with a brain tumor was one of the most terrifying thoughts. Today, this does not seem as terrifying. Life goes on. SO you have brain Tumors, and yeah that sucks, but you are still a 3 year old girl full of life and energy. Many people tell us, " you are so strong". Are we really that strong? DO we really have another choice?
8). You cannot control everything. Life is unpredictable, and no degree of planning can help control any outcome. You must let go of the idea that you are ever in control of anything other than yourself.
9). Some people cannot handle being part of your life. We have noticed that our social circles have slowly dwindled in size. Many people (even people that we never imagined would leave) have just disappeared this last year. Family and friends sometimes do not know how to be there for you, and to avoid the awkwardness, they just avoid you. Learn to forgive these people (something I am still working on myself). Learn who you can rely on and who will always be there to support you and hold on to these people for they will be your life line.
10). Surround yourself with people on the same mission as you. I have searched for support and understanding following your diagnosis. It was not until finding the Children's Tumor Foundation and organizing charity fundraising events to help fund NF research, that I found where I belonged and could be understood. This has been so valuable to my healing and coping process.
11). It is OK to fall apart. You cannot hold everything together all the time. Falling apart does not make you weak; it makes you human.
12). Just Breath. Sometimes when life becomes so overwhelming and it feels like everything that could possibly go wrong is going wrong, just breath. There is a peace found in slow steady breaths. It slows your heart rate and calms your mind. When you are paralyzed in fear, overcome with joy, or fighting off anxiety, just breath.
13). Nothing is certain in life except change. Change is inevitable; remain flexible. Change is scary, but can also be liberating. You have to learn to embrace changes in life, and be ready to make necessary changes if you are feeling stuck.
14). Embrace the small things in life. There is nothing that makes you appreciate the smaller things in life quite like being faced with enormous medical challenges. I have learned to embrace every bedtime story snuggle, Christmas program, dance class, etc. Life can get over scheduled, and it is easy to fall into the daily grind of getting from one place to another. Slow down and truly enjoy the little moments in life, for in the end, life is just the compilation of series of small moments.
15). Choose Joy. Happiness is always a choice. Sometimes circumstances just plain stink. While you cannot control your circumstances nor what happens to you, you can always control your response. It is not always easy, but it is the best choice you will ever make.
So as we look back on 2015, we will not focus on the struggles we had throughout the year. But, instead, we will focus on the lessons we learned with an open heart and open mind. We are hopeful heading into 2016, and we are dedicated to making 2016 a fabulous year despite what we might be faced with.
Love you Always
Mommy
Saturday, January 17, 2015
Life Goes On
Dear Emmersyn,
In an instant, my world stood still. It was as if my heart stopped beating, my lungs stopped breathing. I sat in the midst of the busy dialysis clinic listening to the message from NeuroOncology over and over telling me that you have a lesion in your brain stem that may be causing you to choke and drool excessively. On top of this, you now have 3 probable plexiform tumors in your tiny little body. One in your back, right leg, and neck. This news is devastating to your father and I, and although I promised your brothers not to keep secrets when it comes to you, I cannot bring myself to tell them this update. While our world stood still, and our lives have been rocked, the rest of the world goes on as if nothing has happened. We go to work and you to preschool as if nothing has changed. Our schedule remains the same and packed full of basketball practices/games, soccer training, swim classes, and homework. Our family is the same, our home is unchanged, but something seems so different now. I know this feeling. I have felt this sense of utter shock multiple times since your were diagnosed with Neurofibromatosis type 1 over 1 year ago on Jan 13, 2014. I should be accustomed to it by now, but maybe one never grows accustomed to hearing such news.
I pass people at the grocery store and smile politely despite being a mess inside. I participate in small talk with the other parents in our parent-tot swim class or the other spectators of your brothers basketball game. Talking about swimming suits, basketball shoes, and schedules. As if any of those things really matter. Its almost like a form of punishment at times to have to continue on with life as usually despite being so shaken.
But then you smile and giggle at something your brothers have done. Your scream in excitement to watch Frozen for the 10 billionth time, and sing along with all the songs in your sweet little voice. You shine in swim class and prove that despite all of the new things we heard at your latest appointments, you continue to thrive and achieve new skills. I am reminded that even though this news is concerning and shocking, our family remains the same and our home in unchanged. Our love for you has not changed. And most importantly, YOU are unchanged. You are the same sweet, compassionate soul you have always been and will continue to be despite what new obstacles are thrown in front of you. You continue to show me how to find the light in the darkness, and the beautiful calm in the midst of the storm. Life goes on. You may have more challenges than we initially thought, but you remain full of LIFE. We have no time to wallow in self pity, because LIFE GOES ON. And by God are we going to live it.
Love you always
Mommy
In an instant, my world stood still. It was as if my heart stopped beating, my lungs stopped breathing. I sat in the midst of the busy dialysis clinic listening to the message from NeuroOncology over and over telling me that you have a lesion in your brain stem that may be causing you to choke and drool excessively. On top of this, you now have 3 probable plexiform tumors in your tiny little body. One in your back, right leg, and neck. This news is devastating to your father and I, and although I promised your brothers not to keep secrets when it comes to you, I cannot bring myself to tell them this update. While our world stood still, and our lives have been rocked, the rest of the world goes on as if nothing has happened. We go to work and you to preschool as if nothing has changed. Our schedule remains the same and packed full of basketball practices/games, soccer training, swim classes, and homework. Our family is the same, our home is unchanged, but something seems so different now. I know this feeling. I have felt this sense of utter shock multiple times since your were diagnosed with Neurofibromatosis type 1 over 1 year ago on Jan 13, 2014. I should be accustomed to it by now, but maybe one never grows accustomed to hearing such news.
I pass people at the grocery store and smile politely despite being a mess inside. I participate in small talk with the other parents in our parent-tot swim class or the other spectators of your brothers basketball game. Talking about swimming suits, basketball shoes, and schedules. As if any of those things really matter. Its almost like a form of punishment at times to have to continue on with life as usually despite being so shaken.
But then you smile and giggle at something your brothers have done. Your scream in excitement to watch Frozen for the 10 billionth time, and sing along with all the songs in your sweet little voice. You shine in swim class and prove that despite all of the new things we heard at your latest appointments, you continue to thrive and achieve new skills. I am reminded that even though this news is concerning and shocking, our family remains the same and our home in unchanged. Our love for you has not changed. And most importantly, YOU are unchanged. You are the same sweet, compassionate soul you have always been and will continue to be despite what new obstacles are thrown in front of you. You continue to show me how to find the light in the darkness, and the beautiful calm in the midst of the storm. Life goes on. You may have more challenges than we initially thought, but you remain full of LIFE. We have no time to wallow in self pity, because LIFE GOES ON. And by God are we going to live it.
Love you always
Mommy
Tuesday, November 25, 2014
grayness
Dear Emmersyn,
We are taught as children that things are right or wrong, black or white. It is always wrong to lie, no matter how big or small the lie may seem. Its always wrong to take something that does not belong to you. But one thing you will learn as you grow up, life is rarely black or white. I have always been a planner. So long as I had a plan in my head, I could make it happen. If things seemed stressful, I just needed more organization. When It was overwhelming to work full time and keep up with all you brother's sports, I bought a white board and organized every evening for months. Organization and control have always been a stress relief for me.
NF is not black or white. NF is gray. Your living in the grayness, the uncertainty. There are over 6300 known gene mutations that cause NF1, and countless physical expressions. NF symptoms range from only a few café au lait spots to the development of thousands of tumors to cancer and everything in between. Some NF complications include hypertension, seizures, cancer, learning disabilities, brain tumors, blindness, deafness, renal artery stenosis, pheochromocytoma, orthopedic concerns, etc. There are so many different components to NF there is no way to plan. Your future is a mystery. Of course everyone's future is a mystery. Bad things happen everyday. Healthy people become sick. But for you my dear, your future is likely to be rockier than most. For NF is a ticking time bomb. We will always have to watch for tumors, wait for the explosion, and pray for diffusion before too much damage is done. At just 2.5 Years of age, you have had three MRIs, one surgery, extensive eye exams, two developmental evaluations, blood draws, Numerous physical therapy appointments, and chronic daily pain with physical limitations. Your life has not been easy. Your life will never be easy. I can not plan the stress away. I can not organize your pain away. Some days the sheer magnitude of your diagnosis, and the uncertainty of your future are too much to take. We have to take the bad days when they come. But we also must celebrate the good days. Currently I am trying to focus on the good things. Focus on your smile, your laugh, your sweet voice, your compassion, your heart, your love. Because all of the bad things that will happen in your life are worth it for just one smile and one kiss. You are loved more than you know, and you love with all of your heart. You are beautiful inside and out. You have purpose in this world. Your pain and difficulty has purpose. We may not know why or how, but God will use this for good. When life seems confusing and the grayness becomes overwhelming, focus on the light no matter how dim it may seem.
Love you always
Mom
We are taught as children that things are right or wrong, black or white. It is always wrong to lie, no matter how big or small the lie may seem. Its always wrong to take something that does not belong to you. But one thing you will learn as you grow up, life is rarely black or white. I have always been a planner. So long as I had a plan in my head, I could make it happen. If things seemed stressful, I just needed more organization. When It was overwhelming to work full time and keep up with all you brother's sports, I bought a white board and organized every evening for months. Organization and control have always been a stress relief for me.
NF is not black or white. NF is gray. Your living in the grayness, the uncertainty. There are over 6300 known gene mutations that cause NF1, and countless physical expressions. NF symptoms range from only a few café au lait spots to the development of thousands of tumors to cancer and everything in between. Some NF complications include hypertension, seizures, cancer, learning disabilities, brain tumors, blindness, deafness, renal artery stenosis, pheochromocytoma, orthopedic concerns, etc. There are so many different components to NF there is no way to plan. Your future is a mystery. Of course everyone's future is a mystery. Bad things happen everyday. Healthy people become sick. But for you my dear, your future is likely to be rockier than most. For NF is a ticking time bomb. We will always have to watch for tumors, wait for the explosion, and pray for diffusion before too much damage is done. At just 2.5 Years of age, you have had three MRIs, one surgery, extensive eye exams, two developmental evaluations, blood draws, Numerous physical therapy appointments, and chronic daily pain with physical limitations. Your life has not been easy. Your life will never be easy. I can not plan the stress away. I can not organize your pain away. Some days the sheer magnitude of your diagnosis, and the uncertainty of your future are too much to take. We have to take the bad days when they come. But we also must celebrate the good days. Currently I am trying to focus on the good things. Focus on your smile, your laugh, your sweet voice, your compassion, your heart, your love. Because all of the bad things that will happen in your life are worth it for just one smile and one kiss. You are loved more than you know, and you love with all of your heart. You are beautiful inside and out. You have purpose in this world. Your pain and difficulty has purpose. We may not know why or how, but God will use this for good. When life seems confusing and the grayness becomes overwhelming, focus on the light no matter how dim it may seem.
Love you always
Mom
Thursday, November 13, 2014
The good, the bad, and the ugly
Dear Emmersyn,
The past two days have been hectic. In the midst of the first winter snow storm with temperatures of -19 degrees and falling snow, we drove the 4.5 hours to Denver for your MRI. We left 5.5 hours early, but we should have left about 6 hours early. We ended up being a little late for check in for your MRI. It all worked out in the end, and you actually went back for your scan at your scheduled time due in part to the amazing nurses at Children's Hospital Colorado. You did so great on the drive despite not being able to eat or drink anything. You were cooperative with the check in process, and didn't even cry when the nurse took your vitals (which is a great accomplishment for you). You went out easily, and I got to hold you until you were asleep. Then Daddy and I were ushered to the waiting room to wait until your 3 hour scan was over. Its never easy to leave you with complete strangers, and I always joke they should give me your dose of anti-anxiety meds and give me a bed to sleep in next to you until you wake up. You are so much stronger than me! About 2 hours and 45 minutes after kissing your face, the anesthesiologist came out to talk to us. They had planned on avoiding intubation this time and letting you breath on your own while under gentle sedation. Apparently you had different plans. You Coughed while being put under, and you coughed up a huge yellowish green glob of nastiness. Your Oxygen saturations dropped into the 60s and you had to be intubated after they aggressively sucked out your airway. The anesthesiologist was quite worried you may develop an aspiration pneumonia because of the episode, and she warned us to take you to the doctor with any sign of illness no matter how small. We were then taken back to see you in recovery. You were amazing and woke up very well this time (again another big accomplishment for you). We went to the Hotel for the night, and the waiting began. The following morning was the appointment with the Neuro-oncologist to get the results.
The good news is you have no brain tumors or new tumors in your spine. You do have UBOs or unexplained bright objects in you brain. These do not cause any problems, but rather are just supportive of the NF1 diagnosis. You optic nerves are tortuous and the right optic nerve enhanced slightly with contrast. Dr. Foreman assured us that he did not agree with the radiologist's interpretation and that this did not represent an optic glioma. In fact he explained that all individuals with NF1 have tortuous optic nerves, and this finding on your MRI was only further support of your diagnosis and nothing more. He did however recommend that you have a dilated eye exam every 6 months until you are 16 instead of once a year until 8 as we were originally told.
The bad news is that your current plexiform tumor continues to grow, although it is not growing fast enough to warrant treatment as all treatment options are strictly experimental right now. He further explained that while your tumor is operable, it would be a very complicated and lengthy surgery and all of the tumor may not be able to be resected. Plexiform tumors are aggressive and when disturbed, they tend to grow faster. By removing your tumor, we would likely cause significant nerve irritation which would lead to worsened pain, not improvement like we'd hoped. So my hopes of having the tumor removed so we could be done with it, were smashed. I knew that sounded too good to be true. The only redeeming part of the plexiform discussion was when he stated that the increased pain from your plexiform tumor is not from malignant transformation of the tumor. Also, your tumor should slow down in growth after you turn three, which is promising.
Now for the ugly news. There is nothing right now we can do to fix your pain. Essentially, it is something you are going to live with. We discussed several nerve medications, but they all seemed to have side effects that are worse than your pain in the first place. Given you right leg pain, Dr. Foreman thought it was very likely you have a plexiform in your right hip or thigh that may be causing your right leg pain and weakness. You may also have a slight length discrepancy with your right leg being a little longer than your left. Your right leg is also slightly bigger which can be a sign of a tumor stimulating the nerves. He offered a scan to check it out, but stated that he did not recommend it since there was nothing really to do about it right now anyway. So the only thing I was hoping we could solve with this trip was your pain, and it seems like we are back at square one.
There was so much to be thankful for with these scans, yet I remain disappointed that we could not alleviate your pain. It just proves that we have such a lack of knowledge into NF and plexiform tumors. Someday, through research there will be better treatment options for NF, and maybe even a cure. Until then, I will continue to fight for you and push for more to be done. This week, men landed on a moving comet in space, but we still have no real treatment options for the thousands of Americans suffering with NF. Despite your pain, you will continue to shine. There is nothing you cant do my love, and I will be here for you through it all.
Love you always
Mommy
The past two days have been hectic. In the midst of the first winter snow storm with temperatures of -19 degrees and falling snow, we drove the 4.5 hours to Denver for your MRI. We left 5.5 hours early, but we should have left about 6 hours early. We ended up being a little late for check in for your MRI. It all worked out in the end, and you actually went back for your scan at your scheduled time due in part to the amazing nurses at Children's Hospital Colorado. You did so great on the drive despite not being able to eat or drink anything. You were cooperative with the check in process, and didn't even cry when the nurse took your vitals (which is a great accomplishment for you). You went out easily, and I got to hold you until you were asleep. Then Daddy and I were ushered to the waiting room to wait until your 3 hour scan was over. Its never easy to leave you with complete strangers, and I always joke they should give me your dose of anti-anxiety meds and give me a bed to sleep in next to you until you wake up. You are so much stronger than me! About 2 hours and 45 minutes after kissing your face, the anesthesiologist came out to talk to us. They had planned on avoiding intubation this time and letting you breath on your own while under gentle sedation. Apparently you had different plans. You Coughed while being put under, and you coughed up a huge yellowish green glob of nastiness. Your Oxygen saturations dropped into the 60s and you had to be intubated after they aggressively sucked out your airway. The anesthesiologist was quite worried you may develop an aspiration pneumonia because of the episode, and she warned us to take you to the doctor with any sign of illness no matter how small. We were then taken back to see you in recovery. You were amazing and woke up very well this time (again another big accomplishment for you). We went to the Hotel for the night, and the waiting began. The following morning was the appointment with the Neuro-oncologist to get the results.
The good news is you have no brain tumors or new tumors in your spine. You do have UBOs or unexplained bright objects in you brain. These do not cause any problems, but rather are just supportive of the NF1 diagnosis. You optic nerves are tortuous and the right optic nerve enhanced slightly with contrast. Dr. Foreman assured us that he did not agree with the radiologist's interpretation and that this did not represent an optic glioma. In fact he explained that all individuals with NF1 have tortuous optic nerves, and this finding on your MRI was only further support of your diagnosis and nothing more. He did however recommend that you have a dilated eye exam every 6 months until you are 16 instead of once a year until 8 as we were originally told.
The bad news is that your current plexiform tumor continues to grow, although it is not growing fast enough to warrant treatment as all treatment options are strictly experimental right now. He further explained that while your tumor is operable, it would be a very complicated and lengthy surgery and all of the tumor may not be able to be resected. Plexiform tumors are aggressive and when disturbed, they tend to grow faster. By removing your tumor, we would likely cause significant nerve irritation which would lead to worsened pain, not improvement like we'd hoped. So my hopes of having the tumor removed so we could be done with it, were smashed. I knew that sounded too good to be true. The only redeeming part of the plexiform discussion was when he stated that the increased pain from your plexiform tumor is not from malignant transformation of the tumor. Also, your tumor should slow down in growth after you turn three, which is promising.
Now for the ugly news. There is nothing right now we can do to fix your pain. Essentially, it is something you are going to live with. We discussed several nerve medications, but they all seemed to have side effects that are worse than your pain in the first place. Given you right leg pain, Dr. Foreman thought it was very likely you have a plexiform in your right hip or thigh that may be causing your right leg pain and weakness. You may also have a slight length discrepancy with your right leg being a little longer than your left. Your right leg is also slightly bigger which can be a sign of a tumor stimulating the nerves. He offered a scan to check it out, but stated that he did not recommend it since there was nothing really to do about it right now anyway. So the only thing I was hoping we could solve with this trip was your pain, and it seems like we are back at square one.
There was so much to be thankful for with these scans, yet I remain disappointed that we could not alleviate your pain. It just proves that we have such a lack of knowledge into NF and plexiform tumors. Someday, through research there will be better treatment options for NF, and maybe even a cure. Until then, I will continue to fight for you and push for more to be done. This week, men landed on a moving comet in space, but we still have no real treatment options for the thousands of Americans suffering with NF. Despite your pain, you will continue to shine. There is nothing you cant do my love, and I will be here for you through it all.
Love you always
Mommy
Monday, November 10, 2014
Fake It 'til You Make It
Dear Emmersyn,
Going through medical training, there was a statement our professors always told us; "fake it 'til you make it". What they were trying to instill in our class of nervous PA students was confidence and self assurance. Nobody wants to see a healthcare provider that is apprehensive, anxious, and lacking confidence. If you can't conquer confidence just yet, you put on a brave face and "fake" it. Eventually, what you will learn is that you never really had to "fake" it in the first place. The knowledge and the skill were there all along. You only needed to calm your fears and recognize the truth. It was never truly lack of self assurance nor lack of knowledge that tripped you up in the first place. It was simply an every growing fear. Fear of failure. Fear of making a mistake. Fear of feeling inadequate. By "faking" confidence, you take a little power away from that fear, until eventually fear has no more power.
After five years of practice, I am now back to the "fake it 'til you make it" mentality. No longer with work of course, but with you and your medical care. Every time someone asks how I am doing, I answer "I am fine". They cannot see my inner turmoil. They cannot feel the knot in the pit of my stomach. They cannot hear the 'what ifs' running through my head. They cannot imagine the burden of my worry. They remark at how calm and together I seem, because they themselves would be freaking out right now if this was happening to their child. I just nod and smile, faking the calm with every forced smile and warm hug. Eventually, I will no longer have to "fake" the calm. Eventually this perceived calm will come somewhat naturally to me. Every time I put on a brave face and participate in life instead of letting the negative overcome me, I take away a little power from the fear. Every time I let myself enjoy your beautiful smile and contagious laugh instead of perseverating on your growing tumor, pain, or motor deficits, I take power from the fear.
Last week, I referred to this feeling as a numbness, because I lacked a better understanding. I also did not know how it was becoming so easy for me to "fake" the calm leading up to your MRI in two days. Don't get me wrong, I have had you hospital bag and snacks packed for days. I have had arrangement made for your brothers for weeks. I have toys packed and schedules set. I still have sleepless nights and moments of weakness. But the only way out of this never ending storm, is to focus on the calm and fake it 'til I make it. Keeping my faith bigger than my fears, and focusing on the calm leading into this week. Whatever this study reveals, whatever decisions are made, I know we are strong enough to make it through it.
Love you always
Mommy
Going through medical training, there was a statement our professors always told us; "fake it 'til you make it". What they were trying to instill in our class of nervous PA students was confidence and self assurance. Nobody wants to see a healthcare provider that is apprehensive, anxious, and lacking confidence. If you can't conquer confidence just yet, you put on a brave face and "fake" it. Eventually, what you will learn is that you never really had to "fake" it in the first place. The knowledge and the skill were there all along. You only needed to calm your fears and recognize the truth. It was never truly lack of self assurance nor lack of knowledge that tripped you up in the first place. It was simply an every growing fear. Fear of failure. Fear of making a mistake. Fear of feeling inadequate. By "faking" confidence, you take a little power away from that fear, until eventually fear has no more power.
After five years of practice, I am now back to the "fake it 'til you make it" mentality. No longer with work of course, but with you and your medical care. Every time someone asks how I am doing, I answer "I am fine". They cannot see my inner turmoil. They cannot feel the knot in the pit of my stomach. They cannot hear the 'what ifs' running through my head. They cannot imagine the burden of my worry. They remark at how calm and together I seem, because they themselves would be freaking out right now if this was happening to their child. I just nod and smile, faking the calm with every forced smile and warm hug. Eventually, I will no longer have to "fake" the calm. Eventually this perceived calm will come somewhat naturally to me. Every time I put on a brave face and participate in life instead of letting the negative overcome me, I take away a little power from the fear. Every time I let myself enjoy your beautiful smile and contagious laugh instead of perseverating on your growing tumor, pain, or motor deficits, I take power from the fear.
Last week, I referred to this feeling as a numbness, because I lacked a better understanding. I also did not know how it was becoming so easy for me to "fake" the calm leading up to your MRI in two days. Don't get me wrong, I have had you hospital bag and snacks packed for days. I have had arrangement made for your brothers for weeks. I have toys packed and schedules set. I still have sleepless nights and moments of weakness. But the only way out of this never ending storm, is to focus on the calm and fake it 'til I make it. Keeping my faith bigger than my fears, and focusing on the calm leading into this week. Whatever this study reveals, whatever decisions are made, I know we are strong enough to make it through it.
Love you always
Mommy
Monday, November 3, 2014
In the midst of the storm
Dear Emmersyn,
Today I woke up to see the snow falling peacefully to the ground. Now growing up in Wyoming, you will learn that there are very few times the wind is not blowing, so it is rare for snow to fall peacefully without getting blown around. As I stood there at the window watching the snow fall, it dawned on me how beautiful and peaceful the storm was in this moment. The traffic on the slick streets on the way to work this morning was definitely not peaceful, and the dreary day and overcast sky was not beautiful. But in that moment, I was reminded that in every storm there is still peace and beauty. You just have to look at it differently. I took a moment to just stand there in front of the window and watch the fluffy white flakes float softly to the ground. (And it may have made us all a little late this morning).
With the MRI of your brain and spine and visit with NeuroOncology a little over a week away, I needed this gentle reminder. Storm clouds have been brewing, and I have been letting the winds of worry tear me apart. But with one morning snow storm, God reminded me to "Be still and know that I am God" Psalm 46:10. Today, we are enjoying the stillness of the storm and respite from the chaos.
Never forget to see the beauty in life. Through every storm there is beauty, and in all chaos there is peace. If you cannot find it, try a different view, but keep looking. If nothing else, cultivate your own inner peace to be so strong, that no degree of chaos can ever disrupt it.
Love you Always
Mommy
Today I woke up to see the snow falling peacefully to the ground. Now growing up in Wyoming, you will learn that there are very few times the wind is not blowing, so it is rare for snow to fall peacefully without getting blown around. As I stood there at the window watching the snow fall, it dawned on me how beautiful and peaceful the storm was in this moment. The traffic on the slick streets on the way to work this morning was definitely not peaceful, and the dreary day and overcast sky was not beautiful. But in that moment, I was reminded that in every storm there is still peace and beauty. You just have to look at it differently. I took a moment to just stand there in front of the window and watch the fluffy white flakes float softly to the ground. (And it may have made us all a little late this morning).
With the MRI of your brain and spine and visit with NeuroOncology a little over a week away, I needed this gentle reminder. Storm clouds have been brewing, and I have been letting the winds of worry tear me apart. But with one morning snow storm, God reminded me to "Be still and know that I am God" Psalm 46:10. Today, we are enjoying the stillness of the storm and respite from the chaos.
Never forget to see the beauty in life. Through every storm there is beauty, and in all chaos there is peace. If you cannot find it, try a different view, but keep looking. If nothing else, cultivate your own inner peace to be so strong, that no degree of chaos can ever disrupt it.
Love you Always
Mommy
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