Monday, September 14, 2009


Oh here is another very very special family, with a very special survivor that has such a special place in my heart. Everyone, meet precious Connor Khoury

Connor, has beaten neuroblastoma, but is now so bravely fighting Opsoclonus Myoclonus Syndrome

What is OMS?

Opsoclonus Myoclonus Syndrome is an extremely rare auto-immune disorder that affects as few as 80 children a year in the United States. It is caused by a neuroblastoma, a cancerous tumor, or a virus. It is thought that antibodies in the immune system designed to fight off the tumor (or virus) end up attacking the brain as well.The symptoms of OMS are frightening. A young child who is growing and developing normally suddenly begins to shake uncontrollably and has severe muscle and eye jerks. This soon leads to the inability to walk, talk, sit or even hold their head up. If not treated properly, OMS leads to severe behavioral problems and learning disabilities as well. The disease is not fatal, but children with OMS suffer from permanent brain damage.There is no cure for OMS. Several treatments, including chemotherapy, are used in an attempt to induce a neurological remission. Unfortunately, relapses are common. The immune system can be activated as medicines are withdrawn, or if the child comes down with a cold or fever. The attack on the brain continues with each relapse.

Connor will continue going for treatment for at least another two years - this is what his Mommy Debbie says:

"The little research that has been done says we need to keep him immune-suppressed as long as possible while his brain is developing. This is to minimize the immune system attacking his brain (his body thinks his brain is tumor that it must destroy) Sad that the REAL tumor is gone, but his body can't realize it...that is the evil of OMS, signals get mixed up and that is what causes the strange eye movements and body jerking, as the brain is slowly being damaged.
...but the answer is we plan to continue the steroids, chemo, IVIG and anything else that comes along to TRY and give him as close to normal a life as possible"

Connor goes every few weeks for treatment including steroids, which do sometimes give harsh side effects such as mood swings. But Connor has such an amazing, supportive and loving family behind him that he is supported through each step of his treatment. At the head of the team, Our Lord. The title of Connors blogspot has always captivated me - I WILL LIFT MY EYES!!!

Debbie is an amazing mommy to Connor and to three other gorgeous kids. I want to personally thank you Debbie and family for being a HUGE support to Deqlan and to me to. Your words of comfort and encouragement and prayers really really touch my heart and i cant thank you enough!

Deqlan and Connor share a love of Thomas the train and Debbie sent over a surprise package for Deqlan which included Thomas board shorts! Deqlan wore them on his birthday party on Saturday , cant wait to post the pics for you to enjoy, he looked to adorable.

I wanted to share a poem Debbie put on her blog that really "speaks" volumes to me :

I think I have posted this before-but here is something I wanted to share this month...about what cancer took away from my baby when that tumor grew in his body and caused his OMS. His words that he is fighting so hard to learn and speak...

I Am The Child

I am the child who cannot talk. You often pity me, I see it in your eyes.

You wonder how much I am aware of — I see that as well.

I am aware of much — whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me.

I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times.

I do not gift you with clever conversation, cute remarks to be laughed over and repeated.

I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me.

I do not give you rewards as defined by the world’s standards — great strides in development that you can credit yourself;

I do not give you understanding as you know it.

What I give you is so much more valuable — I give you instead opportunities.

Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible.

I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers.

I am the child who cannot talk.

Go and visit Connor and read more about his journey to healing at

Debbie and Connor and family, prayers, support, love and friendship always!


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