The 2 Year Anniversary Of The Onset Of OMS

Yesterday my oldest daughter turned 10. It's so hard to believe that 10 years has passed since I gave birth to my beautiful baby girl! She is not a baby anymore though she is growing up so fast and boy does she have a mind of her own! She reminds me so much of myself when I was younger she independent,Strong headed, hot headed (just like her mama)free spirited,loving,kind,artistic(the artistic part did not come from me )LOL and so much more. I just pray that she can keep all theses great quality's throughout her life and she does not allow life's ups and down to change her.

Cierra is the one in the middle

Today is the two year anniversary of the onset of OMS. This day will never be forgotten. Makhi went from being a completely happy and health child to having small tremor in his hands and his eyes started darting. I thought to myself I wonder what that is. So I took him to the doctor and he said that it maybe because Makhi is still weak from the Rota Virus. The week before the onset of OMS Makhi has been hospitalized for the Rota Virus because of severe dehydration. Never would I have imagined that a week later my son would not be able to walk, talk or even hold his head up. This week and the 12 weeks that followed were hell on earth. Makhi spent 12 weeks in and out of the hospital having every test done MRI EKG blood work after blood work trying to figure out how my son had gone from a picture of health to this.

Doctors were baffled by his condition. We did get a diagnoses of post viral cerebelltis but all of Makhi's symptoms did not match post viral cerebelltis. The thing that stuck out the most to be was his eye movement. The eye movement is not a symptoms of post viral cerebelltis. So the search was on to figure out what was wrong with my son. Although the doctors kept telling me that post viral cerebelltis is what Makhi had I NEVER believed it.I searched day and night for the answers to my son condition.

I took Makhi is a local pediatric opthamologist who confirmed my worst fears. Makhi did not have post viral cerebelltis and he would not get better in 4 to 6 weeks like all the doctor kept telling me. What he did tell me is he tough Makhi had Neuroblastoma. That is all I needed to hear to send me into a complete panic. I was not sure what Neurobastoma was but I knew that anything with OMA on the end meant cancer and I was a mess. The opthamlogist called Makhi pediatric doctor and he told him that he had tested twice for Neuroblastoma while we where in the hospital (which i did not know about) and both times they came back negative. Now the test is done though urine. So I left the office feeling so confused but I took Makhi directly to the hospital for another urine test and again the test came back negative for Neuroblastoma.

After returning home I spent the hole night reserching Neuroblastoma and that is when I came across Neuroblastoma and OMS. Once I read the symptoms of Opsoclonus Myoclonus Sydrome I knew right away that is what my son had. Now it was up to me to convince the doctors to do a full body MRI to look for a tumor.

It was July 16,2007 and I refused to go to bed that night until I had some answers my son could not go on like this ANYMORE i wanted answers and I wanted them NOW.
I contacted Makhi Neurologist and he was unable to see him so I demanded to see someone eles. There was another neurologist willing to see Makhi but I would have to wait to see him first thing the next morning. He came in to see Makhi before the office opened because he was completely booked that day.Well after seeing him he agreed that we should do a full body MRI. On July 18,2007 I took Makhi to the hospital and after about 2 hours they came out to get me. The weird thing was they did not have to tell me the found a tumor it was written all over there face. I went back to the room where they did the MRI and there it was. A tumor on the back of his spine. I not sure what happened after that because my ears shut down. It was almost like it was a bad dream and I was waiting to wake up. The only thing I could hear was my son crying in the room next door. I walked over to the room with my son got him ready and walked out of the hospital. That walk to my van was the longest walk I have ever made in my life! I could not believe the words cancer where even said to me about my son. What happen to post viral cerebellitis? What happen to Makhi getting better in 4 to 6 weeks? Now I would have to make the drive home and share this news with my husband and 2 daughters.

We met with Makhi's oncologist the next day! We would then spend the next week in the hospital having the tumor taken out. The week after that we left for Springfield IL to meet with the Dr Pranzatelli (OMS DOCTOR).

This is the frist Chapter to the onset of OMS! The story goes on and on but that is enough for now.

Thank you for checking in on Makhi!