I believe that the most important thing in life is being with the ones that you love.
Twisted Mirrors.
That was the first phrase that came to my mind when I read my old blog post compared to the one that I am about to compose. My old blog post was full of the horrific events that occurred before leading to a beautiful ending. This blog post is essentially a twisted reflection of the last post.
On Nov. 28th, God started us on a journey that no one was prepared for. That day, I was admitted to the ED at American Family Children’s Hospital. I had spent the day feeling overwhelmed with intense neurological symptoms. It was that evening that we noticed the drastic changes that would forever change our path. It became clear that evening that the right side of my body had become dramatically weakened. We noticed my right side dragging when I walked. I could no longer lift my right knee up. I also lost the ability to smile with my normal upturned corners. My smile that still portrayed joy was now a flat grimace. My mom and dad were very alarmed and called Complex Care which was what led to our ED visit and subsequent admission.
What followed that evening was something that I was not prepared for. No one was. A surreal nightmare. In the following days, my weakness became more pronounced. Whatever was ravaging my body was thriving in a twisted way. Over four days, I lost the ability to walk on my own. I went from walking two laps around the floor with my mom on day two, to only being able to complete one lap on day three with complete exhaustion. On day four, no laps. No strolls. The privilege of walking was just gone.
It is amazing what one takes for granted. I had never imagined that I would not be able to walk again. In fact, when I laid in the hospital at CHW this past summer in complete intestinal failure, I found comfort in the fact that I could walk. I could be independent. I could do self-care. I could sit up on my own. I could write. This now is gone.
The team at AFCH began running extensive tests. Many blood tests. MRIs A two hour, seven attempt, spinal tap. Countless neurological exams. No answers. It felt like we were drowning. For a few days we thought I had Guillain-Barre. At first blush, one would think this was crazy. Another illness for me? But, at least with Guillain-Barre, there is a way to stop the progression of symptoms and reverse some of the damage. When we were told that the test were negative, we felt numb and fearful.
Week two brought the blessed presence of Dr. Meredith Schultz, a neuromuscular neurologist. She walked into the room and examined me for an hour. She looked at my eyes. The way they moved. The tremor in my tongue. The way that my muscles were wasting away. She looked at my hands for 10 minutes, noting the fine fasciculation occurring. She then turned to my parents and said, “I am very worried about your daughter. Very worried”. After that announcement, we began the testing which would reveal how sick my body was.
One of her first concerns was my breathing. Ever since my admission, my head pain had been excruciating. The initial thought was that there could be migraine pain involved. Morphine around the clock was not touching this pain. When Dr. Schultz heard of my head pain, she wanted to make sure I was breathing OK. After a pulmonary function test, we discovered that my muscles that make me breath and expel carbon dioxide were functioning at 17%. This was alarming to hear. And saddening. I now need a BiPap machine that forces air in and pulls air out. It is essentially a new set of muscles for my lungs while I sleep. The BiPap machine is quite difficult to get used to. It is an unnatural sensation to have air forced into your lungs and then sucked out. I also need oxygen during the day. And can I just tell you, that nasal cannula is mighty uncomfortable.
As week two progressed, so did my weakness. I could no longer get up on my own. I could no longer swing my legs over the bed. I could no longer support my own head. My muscles were just turning to mush.
Week three brought the continued twisting of reflections. The AFCH team was reaching out to experts in Ohio and California. The team at CHW was consulted. All of the hospitalists at AFCH met to figure out what to do. The result of that meeting left us with a new low in this journey. While the experts don’t know what is going on, they are speculating that my body is enduring the wrath of a mitochondrial or neuro-degenerative disease. There is no cure. There is no fix. We can only hope that this progression of disease will hit a plateau and I will not lose anymore mobility.
My beautiful sister, Claudia Rose, said, ” Mom. First she couldn’t eat. Then she couldn’t go to the bathroom. And now she can’t move” This has all happened in the last year.
So where do we go from here? That is the question that we work on answering everyday. The amazing team of Palliative Care and Complex Care at AFCH have taken the lead in providing me comfort. The first priority is pain management. I am now on continual morphine, along with extra doses as needed. I take a sedative at night so that the myoclonus ( muscle tremors/twitches) do not wake me. I rely on lidocaine patches on my feet to help with the burning pain that has continued to progress. I just received my first lidocaine infusion to also help with the burning pain.
Many people ask, what is the next step in this fight of the unknown? In my mind, the answer is simple: Joy and Love and Not Giving Up. The reality is another twisted reflection. I am now going home on hospice care with Agrace. They will provide us with an extra layer of comfort outside of the hospital so that I can be surrounded by those I love. The past thirteen months have been a raw journey of fighting to just have some semblance of normalcy. School. Family. Laughter. Friends. This is all I have wanted. Now, I will need to focus on the beautiful little things. Hugs from my sisters. Hearing their chatter after school. Seeing Boomer bark at dogs in the park. The smells of my mom’s cooking. The twinkling magic of Christmas. I want to be able to spend my time watching the people I love flourish and enjoy life. Throughout this journey, my only concern is for those I love.
I see signs of God all around us through the people that have touched my life. From the amazing nurses who have cared for me and fought for my well being. Nikki, Katie, Allie, Steph, Kelly, Taylor, Tessa, Luke, Nikki M., Virginia, Abbie, Angelica and the list goes on and on. The doctors who have never given up, even though things are bleak. Dr. Syverson, Dr. Carberry, Dr. Webber, Dr.Chelimsky, Dr. Basel. The palliative care and complex care teams, Kari, Julie, Carisa, Kristen, Jennifer, Katie…We have been so blessed that there are so many people trying to help us. Even if we never have an answer, we will forever be grateful for everyone’s tireless search for answers and for their loving care of me and my family. God has truly blessed us with all of these warriors. To our neighbors and friends who have helped in immeasurable ways. To my teachers who have never forgotten me and have included me in school even though I am too sick to go. I truly miss being able to walk through the hallways.
So now I am going to love each moment that I can be here. I will find joy in the fact that God has given me a way to look at life in such an intimate manner. Thank you for standing with us through each leg of this journey. We will not give up, even if the odds are against us.
I am proud of my body. It has fought really hard.
Until my next update, many hugs and love,
Isabelle and the Dunai family
Sweet Isabelle,
I am so sorry for all you have to go through. You are such an incredible young lady and I am so in awe at how you handle everything.. I just talked with Hunter (my son) (who you briefly met when we were at the regatta in Madison), and who I have been updating about you on a regular basis. He thinks you are an inspiration to so so many as well. Keep fighting young lady! Miracles happen.
With love,
Marelle Wallace
Darling Isabelle, I am so blessed to be a part of your life. You are the most courageous, insightful, beautiful, wonderful soul I know. I will continue to lift you, Claudia Rose, Simone and your parents up in prayer.
God Bless you all,
Beth Allison
The picture of you and your sisters brings joy to my heart! I know how much my three daughters rely on one another. You are surrounded by so, so many people who want nothing more than for you to heal and find peace for your body. I hope you can feel that love and caring that is being sent to you and your family. You are an amazing young lady who takes every twist and turn with incredible grace. Hugs and more hugs for you and your family!!!!
Oh honey! Your body has fought such a hard fight! You are so blessed with such a supportive family, friends and doctors. You are in my every thought and prayer in the coming days. Thank you for being such an amazing example of God’s love and peace. He is using you in ways we can not even imagine. Blessings sweet girl! You are loved!!! Kim
Wow. Outstanding courage for a girl your age. You have an incredible gift of sharing your journey. An angel here on earth???Blessing forever.
Isabelle, I think of you often and am always truly amazed and impressed at how you continue to handle all that has been thrown at you. Your parents have raised such a sweet and lovely soul. Be proud of yourself for being such a fighter. It takes a special person to deal with all that you have dealt with and be able to have the strength to rejoice in what is good. You are a beautiful example of kindness, strength, perseverance, and love.
You are amazing…inspiring…a fighter…resilient and the essence of love and compassion.
Your words reflect such strength and beauty. Love, peace, and prayers today and every day, Carolyn and Sharon
You are so loved. I wish we lived closer so we could be near you and feel of your sweet spirit. You remain in our hearts and prayers. God bless you and your wonderful family.
Dear Isabelle,
You don’t know me, but you and I have sweet Tina Ebben in common. She shared your story with me yesterday and I wanted to reach out. You see, I had a dear friend who I think must be your kindred spirit. He wasn’t as young as you, but he was too young. Somehow, though, like you, he was a ray of light through all the pain and suffering. He always saw the good. He was strong. He was brilliant- literally and figuratively. You are a beautiful soul, just as he was. I hope you are able to meet Scott some day – the both of you shine so purely and brightly. Love and peace to you and your family, but most of all peace. -Jean
Bless you Isabelle, dear one. You have been through so much.
Thank you for writing and sharing what has been happening. I don’t remember whose instagram I found you through, but your blog has touched me deeply and your perseverance is astounding.
It is such a hard road.
I have been sick for the past 6 years, first with Brucellosis, which took so long to diagnose as it is rare here and they weren’t looking for it. I was so sick and I knew deep down it was an infection of some kind, with a strong “neurological” component, but so many of the tests were totally unrevealing. Doctors were unwilling to try much and many were convinced it was autoimmune in nature. Their treatment offerings did not feel right to me so I persisted, and finally got the correct diagnosis and treatment. My life transformed; so many of my bizarre and disturbing symptoms disappeared as the antibiotics (doxycycline and rifampin) began to work.
My body was so flattened by this weird infection that had gone on for so long, that many other infections had moved in as opportunists.
It has taken 6 years of fighting for answers and persisting past doctors who wanted to suppress symptoms with steriods, to find the real cause of the symptoms as these “stealth” chronic infections which were ravaging my body. What turned my health around were antibiotics and antivirals. I am doing so much better than I was 6 years ago. I am out of survival mode, which I had been in for so long; it was so hard because my lungs were just struggling to simply breathe – like yours. Every breath was a struggle and I only had energy to just lie there and try to breathe. A scary time.
My health now is not perfect, as now damage has been done in my lungs and in other places, from various infections persisting for so long. For example, doctors at National Jewish (best respiratory hospital in the nation) wanted to give me steriod inhalers for my lungs, and did not even think to take sputum cultures.
I pushed to get multiple sputum cultures, and they all grew E. coli. Antibiotics for that helped immensely but after a while my lungs began to get bad again. A new doctor had the idea to do a Mycoplasma/Chlamydia PCR test on my sputum, and found that I had a ‘Mycoplasma pneumoniae’ infection, which the Bactrim (antibiotic) for the E. Coli had not touched, since Bactrim does not cover Mycoplasma infections. Azithromycin was given to me for the Mycoplasma, and that antibiotic helped me in incredible ways, I could not even believe it. My body just came back to life.
Mycoplasmas are tiny, ancient organisms, without a cell wall (and therefore unaffected by many antibiotics except the ones that cover “atypical bacteria” such as clarithromycin, azithromycin, doxycycline, ciprofloxacin, levofloxacin, and others. Mycoplasmas can’t be seen with a microscope so cultures will appear clear, even though the tiny bacteria is there. They require special culture media and a long time to grow, so the new generation of testing called PCR is the best way to test for them.
Anyway, this is only just snippets of the full story of the past 6 years, but it’s the main gist of it.
And I wanted to write to you because I am *hoping* that when the doctors say they have tried everything for you, that they have done a trial of antibiotics for you that cover atypical organisms (very important!). Even if they don’t think you have infections at the root of the issues, why not just do a treatment trial and see if it helps at all. I also take a daily antiviral due to a herpes virus that my body can’t seem to keep suppressed (my immunity is low). My dosage is 1 gram of Valacyclovir every 24 hours to control this virus. I used to be on acyclovir but it wasn’t strong enough.
Anyway dear girl, I hope a trial course of strong antibiotics has been tried for your sweet body which is trying as hard as it can to fight. And preferably, more than one antibiotic at a time to really blast out anything that might be there. I really really hope this has been tried.
Because, your situation and the rate of your decline just remind me so very much of my own decline which was the result of infections. My personal experience is that most doctors are not thinking “infection” at all. It took a long time to get diagnosed but once I did, and started getting proper treatment with antibiotics and antivirals, my body completely turned around. I have now just been hired for a job, and this is astounding to me because of how far I have come; I didn’t think I would work again, much less live — every breath was a struggle and just hanging onto life itself felt monumental.
With much love coming your way Isabelle, and feel free to contact me if you want. Merry Christmas friend,
Lindsey
I was able to meet you during a clinic visit in AFCH and you are beautiful inside and out. Prayers send on your way ! Grasi (Respiratory Therapist)
My dear Isabella — I have not had the privilege to know you or your family except through this beautiful blog which I read in its entirety this evening starting from your first posting and ending with this posting. You have left a profound impact on me. I will think of you and you will inspire me to be a better person. You are an extraordinary young woman. You are courageous – you are kind – you are selfless. You will be forever in my thoughts for how I can appreciate and live life fully and handle all of life’s trials with grace. (if even a small percent of the grace you display!) Thank you for this – you are a gift, truly.