Friday, September 12, 2008

Time For Another Round Of Prayers Please....

I got a call from Rhett's Neurologist about two hours ago. Remember back at the first of the year they did an MRI on Rhett's brain, and it came back looking fairly well for everything that he had been through, except for there was a very small (a collid cyst is what I think they were calling it) on his brain?

Well they did a repeat MRI while he was under anesthesia for his spinal cord surgery. Nobody ever came in to talk to us about the results, and I never got a phone call so it just kind of slipped my mind.

Tonight I get the call from the neuro and he says that it's almost doubled in size, which he says is "concerning." My heart sank because my thoughts go directly to the C word. But he says that all of the labs they drew while in the hospital everything looked completely normal. The cyst is in the third ventircal of his brain? I think that's what it's called. It's in the center where it holds the spinal fluid.

He asks about how Rhett has been acting, and I told him he is a totally different kid, but in a good way that he is developing like crazy and just blossoming. So he wants to send it to a different Radiologist over at the University of Utah to see what he thinks about it. We might be looking into a repeat MRI soon.

I don't understand this, and he was very vague with me on the phone. I don't see how there could be anything wrong with his brain the way he is doing so well, I mean you all saw the video of him talking and lifting his legs, just acting totally normal right?
I am just baffled. Anyone got any ideas as to what this may be? Could it be something just harmless?

I do know that he said they may need to do surgery to drain it.
As if he doesn't have enough scars on him. I guess it's okay though if it means it's not the C word, ANYTHING but the C word.

16 comments:

Anonymous said...

Pam, google the Colloid Cyst. It is not the "C-word" you are worried about. It's great that they found it early. Dear Rhett will be fine.
Love,
You reader from CT

AZ Chapman said...

hay pam


my name is AZ I am 17 and have NLD kinda like AS. I have read your blog off and on so I thought I let y know who I am.
come visit me


ps why don't y write more about your son with AS

My Three Sons said...

Pam, your right. He is doing so well. I will pray for our favorite little guy. He is so strong and he is going to be just fine. I feel it in my heart. Keep us up on this please.....

Nicole said...

Praying, praying, praying, He (and your whole family) has been thru enough. Please God put your hedge of protection around this precious family!

Cynthia said...

Praying! You have all had enough!

Samm said...

I love Rhett and I will pray for him even harder than I do now. Dont even THINK about the "c" word, because that's not going to happen, God has given him all that he intended to give him, and Rhetts a fighter, he doesn't give up!

Just remember that and give him ALOT of hugs from me and my little girl Hailey!

Stephanie said...

One more thing, huh? I will be praying for you both.

Niksmom said...

Wait to hear what the other doctor thinks --and another MRI if ncessary-before you get too worried. It could be completely benign in the long run. Faith and patience my friend. Sending love and prayers. xo

Melissa @ Banana Migraine said...

He's doing so well Pam - I'm sure he will be fine. I know it's easy for me to say that and how worried you are. I'm sending prayers your way!!

Lesa said...

Oh Pam! I am praying for you and your family! Rhett is my favorite boy on this planet and his Heavenly Father is watching over him. I used to work with mentally disabled people in our community. I had the "priveledge" to work with a few "people" with Downs. My favorite people on the plantet! They are so loving and yes they are people just like us. They have good days and bad days. They have feelings. I have come to love your son soo so much. I live in Idaho. If I ever get to Utah again (gas prices) hee hee, I will let you know. I would love to meet you! Thanks for visiting my blog and for the sweet comments on my work. ((((((((((((Hugs)))))))))))

little.birdy said...

I bet it is one of those, "This is not a big deal, we just need to keep an eye on it" deals. The little man is going to be just fine! Sending love and prayers!

Lesa said...

That was planet. Sorry!

Kele said...
This comment has been removed by the author.
Kaden and Angel Ava's mommy said...

First of all, I can't imagine Rhett going through anything else. I am sure it was heart breaking to hear. I pray that it is harmless, but at the same time the second radiologist can read it and give you a correct dianoises.

As for the binky, (I didn't read the others comments) but I too think he should be able to keep it for now. My reasoning is first it does help with oral stimulation and some is better then none and second, the comforting factor, especially in the hospital. Kaden still sleeps/chews on a blankie...he needs one every night and every night I go in and have to take it off the bed when he is asleep and put it in the laundry because it is soaked from him chewing on it. I couldn't take it away from him at this time either (and he is four). Oh well, whatever brings him comfort and makes him happy, I am all for it!!!

Chris said...

Pam, so sorry to hear that you have yet another thing to worry about. I don't think that you have to worry about the "C" word. I remember reading about these cysts when I was pregnant (doctors thought left ventricle in brain looked enlarged). They are usually benign, biggest concern is their contributing to hydrocephalus which is why the doctor may want it removed/drained. It definitely sounds like your doctors is trying to be preventative rather than reacting to a problem. As you say, Rhett is doing great so it doesn't sound like this cyst is anything to worry about right now, and now that you know about it, it won't be anything to worry about in the future....you'll be on top of treating it, and Rhett will continue to blossom. Keeping you in my prayers--hoping no surgery is needed. You guys have definitely been through enough, and don't deserve another setback.

Imsavimsa said...

Hi Pam,

It sounds like it might be ACM (Arnold Chiari Malformation), and if it is it might have to be decompressed in surgery.

ACM is not cancer and not dangerous. The reason I know about it, is that it's sometimes diagnosed in persons with Noonan Syndrome (NS) that my son probably has. To ease your anxiety try Googling: Arnold Chiari Malformation (ACM). Or e-mail me privately if you have questions?

We're going in for spine- and skull-MRI in 2 weeks to check if my son has a tethered cord or ACM.

Kind regards,
Mia mom to Victor 1½ (NS)
Aland Islands, Finland