Thoughts on the Pod Cast Part One

It was so awesome to be a part of the Podcast that was aired on Monday! I felt honored when I was asked to be a part of NF Awareness! When I came in from doing the show, I got high fives all around!

I was very nervous to do this show, but also knew how important it was to help get the information out there, regarding this disorder.

I thought the show was awesome, and I am so proud of Mercedes Christensen for talking about her own story, as well as her two children, who all live with NF type one. I found her information uplifting and inspiring!

Stony Fletcher was an awesome addition to the show as well. Being a mother to children with learning difficulties, I was very interested in the information she gave. ALL children learn at different levels, and the ones with special needs, need to have extra attention, and definitely more patience given to them, in order to succeed in school. BRAVO Stormy for working hard everyday, and showing that learning challenges do not have to stop you from living a fulfilled life!

As for me, I kept second guessing myself, saying "Oh darn, I should have said this...or that..." But I felt good in general with the questions and answers!

Thank you all for your support....HUGS

Part two of this blog post will address more of the details of the podcast.

Thoughts on the Pod Cast Part Two

I was asked the question "What do you wish the general public knew about NF?" And my answer was simply that I wished NF was as well known as other disorders, and that the information being put out there was accurate and updated.

During the podcast, the topic of my children came up. I went all gushy mushy and said that my kids are THE BEST choice I have ever made in my life, and this is true! However, a comment was made that ALL SIX of my children had the 50-50 chance of passing NF down to their own children.

I wanted to clear this up.....with no offense to the host of the podcast. I am simply trying to help educate the public.

"The only way to get Neurofibromatosis type 1 is to have a change (mutation) in the NF1 gene. A mutation in the NF1 gene can be inherited from a parent ("run in the family") or appear for the first time in a family. A person with neurofibromatosis type 1 has a 50 percent chance of passing the change in the NF1 gene onto a child (regardless of gender) with each pregnancy. Even people with NF1 who are the first ones in the family affected have a 50% chance with each pregnancy of passing on the change in the NF1 gene. (This pattern is called autosomal dominant inheritance.) A person with a mutation in NF1 will always get the disease. This means that neurofibromatosis type 1 does not skip generations. If a child does not inherit the disease from an affected parent it means that the child has a very low chance (the same as the rest of the population) of having a child with neurofibromatosis type 1." www.genome.gov/16015147

This states that I, myself have Neurofibromatosis type 1...therefore, I have a 50-50 chance with EACH pregnancy to pas on NF. That saying I have passed NF down to THREE of my SIX kids. The THREE who have a confirmed diagnoses, have the 50-50 chance to pass this on to THEIR kids. The THREE who do NOT have NF, have the same chances of having a child with NF, as anyone without the mutated gene.

I did not want to address this during the podcast, because I wanted to make sure things stayed on schedule, and I also was not sure that I heard the comment correctly.

After coming in from the podcast, my husband did ask me about this comment, and since then, I have received several emails, also addressing what was said during the podcast.

Sometimes what we hear as parents, from doctors who claim to know it all, still needs further research. I NEVER walk away from a doctor visit anymore with the information I receive as something set in stone.

I research, ask MANY MANY questions, research more, then ask more questions.

Thanks again to Jacquie Rogers, Lillian Cauldwell (Internet Voices Radio), Chef Michael and all those who listened.

NF Bracelets!

The school kids all wore a NF bracelet today, each talking about either having Neurofibromatosis, or about their sibling who has it.

Rachel came home talking about giving one of the bracelets to a teacher, who we just found out, has a 2nd grader with NF. "I'm THRIVING with NF, now you can be too!" She said as she handed Mrs. Morlan a blue and green wristband.

"She cried and hugged me" Rachel said. "Why do you think she cried Mama?"

"Because honey, you made her feel good...people cry all the time when they feel good....and sometimes people with NF feel alone and scared....and you helped her know that she ISN'T alone....and she doesn't have to be scared."

Rachel just looked at me.....wrinkled her cute little face....."Well...I'm not scared of NF", then ran away.

Whether you are a 40 yr old with Neurofibromatosis, or a 7 yr old, the bracelets are a great way to start the conversation.....a great way to say you are standing up and overcoming the odds. A reminder that you are NOT alone.

What's Up Wednesday?

It's been a little KRAZY at the Hopkins house lately. The end of the school year is right around the corner...and I have been busy packing for our move to Colorado. You mix in all the medical issues...and Yeah...you get KRAZY!

Bailey's MRI went well. I am always impressed at how calm and relaxed she is. Just a "go with the flow" type of girl. I am very proud of her, and I know, whatever happens, she will get through this just fine.

I was kind of upset, when I got a call from Dr. Giddings nurse. She told me the report of the MRI looked to be showing TWO masses, and that I needed to make sure I make it to the upcoming appnt.

"Okay..." I thought. "Two tumors on each of the hearing nerves. Hmmm sounds an awful lot like NF2." I had been fighting Bailey's doctors on getting a proper diagnoses, because they are sure that even with ONE tumor, she has NF2. I totally disagree.

Hubby surprised me and showed up in Washington....He knew how crazy things have been for me, and wanted to AT LEAST be there for the meeting with the doctors. It was really nice to see him again.

The appnt for Bailey went well....we talked about the surgery (and the fact the DOCTOR on sees one tumor), recovery and what the after affects will bring Bailey. All she could hang onto were the words, "complications could occur, resulting in death."

On the drive back to school, I just kept telling Bailey that THAT won't happen. She is in very good hands and when we get moved, the doctors in Colorado will take GREAT care of her. Bailey got very quiet.....I knew she had these thoughts rolling around in her head.

She's a lot like me. When stressed, I close everyone out. I never had anyone to talk to growing up, so I learned to keep things inside, stressing about everything....Then like a massive volcano erupting, I'd explode in a fit of crazed frustration.

I don't want that for Bailey.....I pulled the car over, and just held her. Told her what an amazing young woman she is. "But Mommy, the tumor isn't bothering me, why do they need to take it out?"

The Acoustic Neuroma or Meningioma that Bailey has, has probably been silently growing inside

Bailey's head for YEARS. I told her that we COULD leave the tumor there, but in 10 or so yrs, it could cause her real problems, so the doctors want to try to stop it from happening.

"I'm scared of dying and not being here anymore." she says to me. I told her that I would be there every second. "Mom, this is going to cost you a lot of money." Boy...oh boy.....my stress about the insurance has sure trickled over.

I didn't mean for that to happen, but kids seem to always find a way, to find out what's going on. The endless phone calls to doctors, and insurance companies...have exhausted me, and now have stressed out my 14 yr old! What is wrong with this picture!?!? :(

Children should ALWAYS ALWAYS have insurance. NO matter what! Parents should not have to lay awake at night, wondering how a surgery will be paid for. I have drove myself crazy with worry about transferring Bailey's case to Colorado.

I looked at Bailey and told her that I was sorry for letting ANY of my stress touch her. That all she needed to do, was to be strong and brave.

We changed the subject to summer camp! Bailey is attending NF camp this year...and I am soo excited for her. She has been talking about is all year, and it is finally getting close.

It's a good thing that surgery will be August...because now she can go to camp and not worry about stitches and recovery.

So as MAY winds down, and the summer months begin...I brace myself. There is never time to rest, or get off my guard. I need to focus straight ahead. Looking bk is okay, because I can see how far I have come....but I will not look back with regret. Look fwd with hope, drive, determination..and most of all A THRIVING ATTITUDE!

Neurofibromatosis

I remember first hearing the word Neurofibromatosis, I was 4 yrs old when I would run around the house repeating the word over and over. "Neuro-tosis Neuro-tosis". This did not make my parents very happy...they were dealing with my older brother becoming very sick and eventually blind because this disorder.

Neurofibromatosis, is a genetic disorder of the nervous system. 1 in every 2500-3000 births are affected with 'NF'. Half of those are from a spontaneous mutation....but not my brothers.

Mike was diagnosed with an Optic Glioma when he was 5 yrs old.

Examination of my brother's body, gave key indications that he in fact had NF. (Cafe au laits spots, auxiliary freckling, and soft fibromas growing all over his body) At first, doctors gave my parents no information how this occurred. In fact it would take years before this question would be answered.

My mother's own issues went undiagnosed until after she had children. Her Cafe au laits, were just "birth marks", the freckling....was just freckling, and the tumors were just moles.

I don't blame my mom, for not wanting to accept the reality of NF. It's scary, no doubt. I understand that my mom wanted to protect us from the pain, that this would bring us. But I have also learned that living in the closet, is an awful lonely place to be.

Mike is now 39 yrs old. Mostly blind, partially deaf, but a living testament that Drs do not always know the answers. No one can predict exactly how a disorder will affect them...not even the ones who claim they know everything.

Now that I am a mother, to children who have been diagnosed with Neurofibromatosis, I have an obligation to teach them about it. To let them know that it's okay to be scared.

I have stopped hiding from NF and all that having NF brings. I have become a stronger person now that I have accepted it. Now my focus to to help show my kids how not to hide.