Good news and some really bad news

I will start with the good news-

I saw my PMD yesterday for med refills. I just love him! He's so good to me. He never shakes my hand when he enters the room. He always hugs me first. I haven't even known him very long. He's just such a nice person and really cares about what I go thru. He wasn't in the room very long because I just needed my meds refilled, so that's about it.

More good news-

I saw my eye doctor at MD Anderson and yes it's just a small cataract in my eye. Nothing serious and can easily be taken out which we will schedule soon. They said the cataract was caused by the steriod I am on which is very common. So I need to speak with my brain doctor and see if he wants me to stay on the steriod or not. The eye doctor didn't seem to think I needed to stop it since cataracts are so common. It is still very hard to see espically the computer screen because of the backlight. Anything bright is difficult to read or see.

Now for some really hard news to tell. This morning we got the phone call that my sons DNA test came back positive for Neurofibromatosis. I knew there was a 50/50 chance of this happening. My heart is broken but we will get thru this. He's going to be strong just like his mommy:)

Our next step will be having a MRI done on his brain and spine. These tumors grow very slowly and more than likely he will be a teenager before he needs any surgery, But he will need to be watched very closely.

I wish I had better news regarding this but I know no kid is guaranteed healthy. I guess with Oliver we now know what he will have,

 

I was going to respond to the other thread Tina started but wanted everyone to know I read all the replies. It's just really hard to see and type right now.

 

xoxo

Maryann and Oliver

maryann,

happy about your good news, nothing is better than a caring and compassionate doctor, i am blessed with many that treat me.

sorry to hear about your son, the only good i can see, is that at least you have a good heads up on the situation and can be well prepared to deal with it.

my best to you and your son

david

My goodness marryann, I can't imagine how hard that must have been to get that news. I have no idea how I'd hold myself together if I had found that out about my own son, at times, he really feels like the whole purpose that I'm here today. Without him, I'm not sure if I would have had the strength to fight the battles that I have fought over the last almost 3 years.

I had typed into this post, a very recent event that happened to our family, but after reading it, it seemed inappropriate, and I'd rather not read about it again later. Just know that I'm being sincere when I say that I hope you and your son have many many decades of wonderful times together ahead of you, and I hope that this will merely be a speed bump or less in his life.

I hope that you are able to find the strength that you need to carry your little man through it, I have seen the strength in your posts, and I know the two of you will get through anything. You really are a remarkable person. I'll be here whenever I can to offer the support that I can.

Take care of yourself, and keep up the incredible work that you do with your little boy, I think many people these days might have blown off getting that DNA test, but from what you said about it being slow to progress, you have probably given him the chance that others wouldn't have. Good luck to the both of you, and God Bless.

How wonderful that your PM doc is so caring. I lucked out and got a good one on my first time. I was very nieve when it came to PM, and the more I read, I am so grateful for my doc... It seems all to easy to fall into a "bad egg".

Happy to hear that your eye issue has an "easy" fix. It's all relative, isn't it and surgery is most likely something we never look forward to, but the promise, or hope, of relief at the end makes it easier to swallow.

So sorry to hear about your son. I'm sure it is a relief to have a diagnosis... It gives you answers and a starting point, one from which to move forward. Nonetheless, it's never easy to see our kids have to deal with their own medical issues.

I will keep you and your family in my thoughts as both you and your son begin this journey. Take care

Thank you all so much for the kind words regarding me and Oliver. I read the replies over and over because it means so much to me to see the support from everyone.
Just a small re-cap on NF- it causes tumors to grow in the brain and spine. Only good news is they grow very slowly and are pretty much never cancer.
Oliver will need to be watched closely. MRI's probably ever 6 months to a year. I was told the DNA test didn't even need to be done now, but we wanted to know now. I am glad the waiting is over and we can move forward to treat this to same way mine is treated.

about the cateract, thanks for the info on those because I really haven't had much time to do any reshearch on them. I really want to stay on my steriod so I am glad to hear I will be able to. I am sure my doctor will agree and I am excited about that.

Yes my PMD is so wonderful. He ran the pain clinic at MD Anderson for 10 years before he left to open his own practice. I was worried about going to see him because I am not crazy about the PMD's at MD Anderson. They are very strict. But he's completely different. He was also named one of the top 40 PMD's in the USA a few years ago.
When he was writting out my script, he couldn't remember how many I take. So he asked me "is it 1 every 3 hours or 1 to 2 every 3 hours"? He trusted me to tell him what I needed insteaded of him telling ME what it needs to be. He's really good about working with me on what I need and not going by a set study number in some text book.
We looked over some pictures of me and Oliver that my parents had taken when I was in the hospital. He loved that I brought those. Told him I was going shopping as soon as I get out of here. He laughed and said that's great keep doing fun things like that you deserve it, and I am glad the medicine is helping you to do things like that.

Anyways, I am turning 30 tomorrow. Whoohoo!

rockyyd- all my best to your friends daughter.

Matt- just real quick, I think you are an amazing father as well. And the other single father on here, can't remember his username, he posted in the other thread Tina started. My ex husband wants nothing to do with Oliver. He calls maybe once or twice a month and never gives me money for Oliver eventho he has a really good job. So anyways, I admire men like you who take care of their children. Like you said, I don't know what I would do without my son. He's my world.

Maryann

Hello, my name is Kathy, I have been a member for awhile now but have been out of commission for a while.

I read your  post and was so moved, I know I do not know you, but just reading your post I can tell what a strong woman you are.

It makes me hang my head in shame when I realize my problems seem like nothing when I hear what you and your little baby are going thru.  You and your baby give me strength.

Glad you found this sight.

Kathy/nini

Don't go into cataract surgery uninformed or before it's really necessary. There are only a couple of types of replacement lenses available. You have to choose between being to see only distance and needing glasses for anything close or the kind with concentric circles for different ranges of vision that often cause halos in your vision.

I went to a seminar a while back and the docs only promissed maybe 20/35 vision, which is way worse than what I have. Some types of lenses are now being found to cause "glistenings." They line the patients up like sheep and do a whole bunch at one time with no regard to individuality, as far as I could understand. I'm waiting and hoping for some more new developments in lenses.