How our journey to the cure began

How our journey to the cure began

Hello everyone and welcome to my blog. I am the mother to 6 wonderful children three of my amazing children have what we call special needs. For this blog I am going to begin with focusing on my youngest son Jackson or as we call him often Tonka.  We wanted to share Jackson’s story in the hopes that more parents and people in general would be able to see the miracle of what I call GOD’S medicine. I’m going to begin by sharing Jackson’s story.

Jackson was born 8 weeks early and spent nearly two months in the neonatal intensive care unit. After being discharged and sent home Jackson developed much more slowly than kids his age. He struggled to do thing most children are able to do and by the age of ten months I became concerned so we set out for answers. He was screened by early intervention and diagnosed with global developmental delay. Two months later Jackson was due back at the neurologist for a follow up check of his brain bleed they had found while in NICU. We re scanned and found that there was no change. His neurologist at this appointment then diagnosed Tonka with Cerebral Palsy or more often referred to as CP.

Jackson began a life of physical and occupational therapy to get him to basic functionality. He struggled to sit, crawl, roll over, walk, eat holding his own bottle was challenging. I was the mother to an infant for nearly 12 months before he was able to do anything most children master by six months. Jackson finally became mobile at the age of two. He was beginning to walk. His walk was struggled and unique to him due to his high (tight) muscle tone but we were grateful for mobility non the less. Not long after Jackson found his legs as I say a mysterious illness struck leaving myself and his doctors struggling for answers.

In July of 2014 Jackson started having fevers and ear aches so I took him into the doctor. they diagnosed him with an ear infection and sent us home, the next day Jackson seemed to be in extreme pain trying to sit up he couldn’t roll without crying and refused to eat anything. I continued with the treatment for the ear hoping it was just a bad day, but I was wrong what I though was a bad day was just the first of many nightmare days. The following day Jackson seemed almost crippled with pain and fever unable to move he was stiff and ridged nothing helped I again took him to the doctor who found the ear infection gone and then decided to run blood test and a bone scan. They had noticed inflammation in his bones and were concerned he may be suffering from possible meningitis, they sent us home and wanted us to come back for a spinal tap after blood work results came in.

I took Jackson home but something was pulling at me telling me to take him to the hospital in the next town so later that night my anxiety grew and I took Jackson into the hospital in the next town they immediately drew labs did a spinal tap and admitted him to the pediatric ward afraid he may have meningitis. Later the next day test came back that he in fact did not have meningitis so the search began to find out what was causing this illness. Over the course of 2 weeks the doctors did multiple test Mri and bone scans, medicating my son with Lortab and Tylenol along with naproxen. Every day his blood work showed elevated inflammatory markers yet there was no idea why. Finally the doctor comes in and says I believe after all the test we can say that your son I suffering from Kawasaki disease. They recommended IVIG therapy and continue with medications, once my sons blood work came back with expectable inflammation marker numbers he would be discharged even though none of his symptoms had been elevated by their therapy’s and medications.

The day we took Jackson home he was still unable to walk it was uncomfortable and at times painful for him to sit I had to put my son back into a high chair and spoon feed him as if he was a small baby all over again. I was heartbroken scared and confused. I researched this disease and found nothing that was helpful for my child and no way to treat him, I watched him revert back to a baby and felt hopeless every day. For months I watched as my child struggled to walk. Cried for him at night prayed for answers and waited. When October came around we had a neurology appointment at a hospital four hours from home Halloween day, upon arrival the neurologist seemed very concerned with my son. She said that the Kawasaki he was diagnosed with should have cleared up long ago and that these symptoms were not symptoms of Kawasaki. The neurologist decided to admit my son to the hospital.

After being admitted Jackson again underwent multiple test, blood work, MRI, bone scans, you name he did it. His inflammation markers were elevated again and there was no real reason for it. I had to go home to get my other children to a friend so I could return to be with Jackson. Not long after arriving home I got THE call. It was the head of Jackson’s medical team at the hospital. I will never forget the words that changed my life. She said “I hate to tell parents this over the phone but I have to get your ok to do this test.” She said “we believe your son has Leukemia. Everything we have tested for and all the results as well as his scans lead us to believe this” my heart dropped out of my chest I felt like I was going to throw up. The doctor said “ we need your permission to do a bone aspiration” of course I agreed. The doctor then said ma’am there is one other possibility and it is very rare so rare in fact we would have to call in a specialist to help us if this test shows that it this. She stated it’s a Bone inflammatory condition known as Chronic Recurrent Multi-Focal Osteomelitis or CRMO. She said it’s a condition that cause inflammation in the bones because they believe there to be an infection and the white cells start attacking themselves causing inflammation pain swelling and redness. She said that with the bone aspiration they would be able to either confirm Leukemia or rule it out and if they ruled out leukemia they would be able to conclude that he suffers from CRMO.

I asked her to hold off the test until I could get back to hospital roughly four hours from then. They agreed I hung up the phone feel on the floor and cried and prayed and cried some more. I called family member after family member until I reached a friend who helped me through who calmed me down and was able to refocus me. After regaining my ability to function I packed up my little ones took them to my friends and hit the road. This was the longest four hours of my entire life. I spent that trip on the phone with anyone who would listen I distracted myself and kept my mind off everything. When I arrived back at the hospital I composed myself put on my best mom face and snuggled my little boy as we waited for him to get sent in for testing. We laughed and played but inside I never felt more like a robot on auto pilot putting my all into keeping my son at ease. When they took my son back for his test I was anxious and edgy the clock seemed to freeze.

The moment Jackson came back to the room all I could do was cuddle him I never wanted to let him again. They had taken a needle and removed a piece if the bone from the top of pelvic bone. It’s was saturated with blood, he was blissfully unaware smiling and happy to see me. Waiting for the results of that test was torture I prayed for the CRMO diagnosis because I knew that wasn’t a possible death sentence. I knew on top of all I had going on with my children that I could handle that. I was so afraid of the cancer diagnosis because it made me helpless there would be nothing I could do to make it better. I never wanted to watch any person, child or not go through the horrors of chemotherapy.

So when the test came back and team of 8 doctors came in to give is the news I held my breath and prepared for the worse. The doctor says we have good news and bad news. Bad news is Jackson has CRMO, I nearly cried. Good news is Jackson does not have Leukemia. I felt like the heavens had opened and were shining down on us. They went on to explain the treatment plan and set us up for discharge. Our mystery diagnosis had been solved. As relieved as I was this sparked something in me. I felt grieve and a heaviness for every parent that has to hear those word for any parent that has to endure chemotherapy I was heartbroken for the children that come to this place and I would never forget the feeling I felt the earth shattering moment my life was altered and the threat of cancer entered our lives. Little did I know at this moment less than a year from this date I would be a chemo mom.

In May of 2015 my daughter would begin chemo treatments for a brain stem and optic nerve tumor. As you follow this page you will find that this little child and his illness put into motion a movement within me a need and want to heal all the children or to give them a fighting chance. It was then that I set out on my mission to find Medical marijuana or cannabis oil for my children and to find a way to get this life saving and live altering medicine into the hands of those who need it. Welcome parents grandparents and those who join me in this movement to heal the kids. My little Tonka has begun low thc oil and is thriving he is able to get up and walk around without assistance he masters stairs and has recently began to jump.

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