Hi, everyone! I wanted to tell you a little about my son Liam. About this time last year I was writing a post about birthmarks. My oldest son, Josiah, has a Port Wine Stain on his leg, just like Gorbachev has on his head, but not as red. Liam, I had noticed, had several Cafe' Au Lait Spots. As I was researching birthmarks for the post, I came across something disturbing- "having six or more café au lait spots greater than 5 mm in diameter before puberty, or greater than 15 mm in diameter after puberty, are cardinal diagnostic features of neurofibromatosis type I" Clicking on the link about neurofibromatosis I was even more disturbing.
As soon as Liam woke up the next morning, I started counting and, in total, he had about 12. I scheduled an appointment with his doctor immediately. Liam has always had a big head, but we didn't realize how quickly it was growing. The doctor said his head growth was off the charts and referred us to a neurologist.
The neurologist was concerned with him having neurofibromatosis (NF), too, or hydrocephalus. We had an MRI the very next day and everything came back normal. We were relieved, but no questions were answered. Did this mean he didn't have NF? No, it only meant he didn't he did not have any tumors yet, which are caused by NF.
Almost a year later, this January,we were referred to the neurologist because his head growth was off the charts again. Another MRI was ordered and this time we weren't so lucky. They found two tumors in his head, one buried deep in his brain and the other is right behind his eye on the optic nerve. They are, at least, non-cancerous, but can cause some major issues, including blindness, learning impairments, and much more.
So, what happens now? We have been referred to a neurosurgeon who will order another MRI and decide if the tumors are growing, what needs to be removed, and what can be removed. It's likely the one inside his brain cannot be removed.
Liam is such a happy little boy and has no idea the struggles ahead of him. NF causes tumors for the rest of his life. As we did last year, we just have to wait and see. He has a tough road ahead of him with surgeries and other procedures. In the meantime, we will be praying and hoping for the best. I hope you will do the same.
I'll keep you update on his status. If you notice several Cafe' Au Lait Spots on your baby, please get them checked out. NF is a disorder better caught early than later.
9 comments:
Oh! That is so terribly stressful for parents, and a sad road ahead for Liam! He is in my thoughts...as are you!
Oh my goodness! My mama heart breaks for you! I hope that he is affected in only the most mild way and that none of the major side effects hit him. I am so sorry. He is a beautiful boy!
I'm so sorry to hear about Liam! I hope the doctors are able to fix him up, and that he's limited as a little as possible.
Incidentally, I love your hair!
Oh poor sweet boy. He is in my prayers.
Wow! How tortureous to play that kind of waiting game! We'll pray for Liam and may he be a lucky boy who did not have to be so interefered by this later on. Have you thought of seeing if there may be an NF Parents group nearby, may be a comfort in this?!
Good luck! Keep us posted and we'll keep Liam in our prayers
Thanks so much for all your wishes. I'll keep you posted!
Hugs and prayers from our family!
I am so sorry sis. Each day is a blessing. I know you are a strong woman and little man is a bundle of joy no matter what. You have tons of support. I am looking into a fund raising walk. I never knew there was so many outlets for this disease. I will continue to reach out and investigate. I love you.
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