NIH

The day started early. It was so nice to sleep, virtually uninterrupted. The hotel room stayed cool and dark and I slept sound and deep.
Our first stop was to get some breakfast, that was provided by the hotel. Orange juice and a bagel for me....Mike chose to just have orange juice...since they didn't have anything he liked.
We caught the shuttle from the hotel to NIH....It was a bit confusing, with all the security measures, but we made it.
Mikey needed his diet coke, so we found a vending machine –
We stopped in at the admissions desk, then the voucher desk. Everyone we spoke to, was polite and took the time to explain things.
They checked us checked in, and gave us a folder for our medical records. It was nice to have a copy of our schedule, so we knew what to expect, and what time everything was going to happen.
Blood draws---Mikey joked about his blood coming out carbonated and carmel color, because of all the diet coke he drinks.

I have to add something really funny....at our hotel, there is a Diet Coke vending machine.....it charges $1.75 for each diet coke....Mikey had to go to the hotel desk to tell them that they were OUT of diet coke.....he was sad to hear that they fill it up once a week. OUT OF DIET COKE?!!?!?! NOOOOOOOOOOOOOOOOoooooooooooooooooooooooooooooo!! For a guy who drinks at LEAST 4 a day, this was NOT happy news. Lucky for him, the 7-11 was just one block away!

I met Sarah Coombes, who was just as wonderful in person, as she had been in email, and on the phone. Mike and I went over a brief family history, and talked about any symptoms we've been experiencing. Things like pain, vision problems, depression, head aches etc. There seems to be a connection with Neurofibromatosis and depression....(really?......No Kidding!?)
I also saw a very nice lady, who is a pain specialist. After talking with her....It seems like my back pain has a lot to do with stress. When a person is stressed, or has a very stressful life.....they “tense” up their muscles....and you can do this, and not even be aware of it. Anyway.....she suggested that I look into acupuncture. I have read about the benefits of acupuncture, and I'd love to have this done. She was so friendly, and I appreciate the time she took out of her day to meet with me.
After meeting with the pain specialist, I went back upstairs. Mike had met with Dr Stewart to have his physical exam and some photos of his skin....and now it was MY turn!
This was the exam I was so nervous about.... I don't even let my own husband see me THIS exposed. If I could make just one suggestion to make this a easier process, it would be for the Dr. nix the gown altogether. I would rather of been standing there in my “skivvies”, then to have to deal with how much or how little the gown was covering.
This exam was both uncomfortable and comfortable at the same time. Even an “average” person would feel creepy if every inch of their body looked at with a black light and a magnifying glass. But, I also felt an overwhelming sense that these Drs. Realy truly cared about me. They weren't to clinical, and took the time to explain to me, exactly what they were doing.
Sarah Coombes drew out a family tree, and we dove into the complicated NF web. The “who's who”...and “what's what” of this painful devastating disease. Genes and cells and chromosomes....and what exactly the study that we are doing is all about. Basically....NF is so variable. Even in the same family. Why? Why is that NF gene so large and complicated? Why are there people like Reggie Bibbs.....then people where the NF is near impossible to see. That is the whole point of out visit to NIH. I am so blessed to be a part of this study....so blessed to live in a country, where the specialists, are looking so hard for answers.
Tomorrow, will be another fun filled day! On the agenda....Echocardiograms, MRI's, dental consultation....then the wrap up session for the last 2 days. WHEW.

Bethesda MD!

Ahh - Finally! Mikey and I are here at the hotel in Bethesda, Maryland. The flight was uneventful (which I'm sooo thankful for!) and we didn't lose our bags!

The East coast is sure different than the West coast. The people here always seem to be in a hurry. Mike and I were practically run down by several people, when we went exploring, outside the hotel. I wonder where they are all going?

Mike and I found some greasy spoon, and got a hamberger and fries. We took the food up to the hotel, and began relaxing!

The hotel is charming. I am feeling quite spoiled right now....for even my husband and I didn't get to feel this relaxed. Our honeymoon wasn't quite 24 hrs...rushed and quite stressful.

So, tomorrow starts the begining of our testing. We are going to bed early....waking up early...and heading to the hospital.

I am looking fwd to this....I'm excited to finally be set free, from hiding. I am doing something that can possibly make a difference. One tiny step foward.

Keep following me...and this amazing journey.

Medical Research

In a few days, I will leave for Maryland, where I will be participating in human research for Neurofibromatosis.

While both excited and nervous, I find myself push by an unknown force of satisfaction. I know I am not going out to change the world, but it is really gratifying, knowing that even in its small -tiny way, may in fact, help researchers in their quest for a cure.

All I want in life, is to make one small difference, that could possibly ripple into something amazing!

So, my bags are packed.....I'm ready to go....(makes me want to break out in the John Denver song) "I'm leaving .. on a jet plane...."

I have my schedule, for when I will be at the 'National Institute of Health", and I will be quite busy. Which is good....because that will keep my mind off of what's going on at home.

My brother Mike, will be coming with me, which makes me feel a WHOLE bunch better! He is just as excited....but I'm not sure he quite grasps, what will be happening.

Monday morning will be filled with blood draws, physical exams, body pictures (ACKKK!), counceling and MRI's.

Tuesday will include, echocardiograms, dental consultation, MRI's, and wrap-up of the last 2 days.

All in the name of science, right? Jeeez!!!!

I know this will be the stepping stone to something great. I will fill everyone in, as the day closes, to let you know I have survived! :)

I pray answers come from this....that someday soon, researchers will have found a way, to help people cope with such a devastating disease. But until that day comes....we have hope. We have wonderful people fighting everyday, to discover a cure for so many diseases.

If you have the opportunity to be able to donate your time (and your body) in the name of research, please do. I found out about this wonderful opportunity through the CHILDREN'S TUMOR FOUNDATION (www.ctf.org)

Thanks to everyone, for all the love and support!

Let go....Let God

It never fails. It seems that the more I try to have faith in something, the harder things seem to hit me.

What does one do, when the avalanche of life's problems bury them? How are we to free ourselves from the pounds of dirt on top of us? We can't simply get up and walk away...because the more we move, the more dirt gets piled upon us.

We must simply let go, stop struggling and have faith that God will pull us out of the pit. That's the hardest thing for me to do. Giving up my control, and putting my faith in something is near impossible. So I sit in a tug-of-war, with someone, I could never win against.

Today, I got the results on Braden's MRI. His Dr., is definitely not educated in NF, and struggled through reading the complicated and confusing notes that the technician left. I was left feeling very confused myself.

Braden has "several" tumors that are at the base of his brain. When I asked the Dr. what "several" meant.....he responded that he didn't know, and it wasn't charted. "There are many, Ms Hopkins".

He prescribed medicine, for the frequent headaches, that Braden suffers....and he informed me, that Braden would likely have to take this for the rest of his life.

I was told to really pay attention to his vision...and to be sure Braden gets regular eye checks. Which he would, regardless of this damn NF.

Physical and motor skills were also another thing to watch for...."If he starts to get really clumsy, or falls down.....we need to have him in for another MRI"........otherwise, MRI's will be done yearly.

No optic nerve tumors *yay*

I got off the phone, gut wrenched......My head, hot and heavy. Flooding my body, were emotions that are all too familar. Guilt, fear, anger.....I wanted to scream, and run from this news. Now I have 2 children, who definitely have NF.....2 children who have brain tumors.

I find peace when I hang my head and say a prayer. I thank God for all 6 of my children.....and especially for my children who are dealing with such unknown. I pray for strength. I pray for God's healing hand to come over my family. Then, I feel it. I feel the Lords loving embrace...and all of the feelings that were weighing my heart down with such agony, fade.....I smile, and know that whatever may happen....I know the Lord is part of it. I find strength in Him.

So, hold your children close...tell them how much they mean to you. And show them. Play with them. Get dirty, messy.....and laugh!

Restful and afraid....

As the medicine enters my 11yr old son, putting his shaking and terrified body to sleep.....a tear rolls down my cheek. Thoughts of regret about the choices I have made, begin to to throw me into a downward spiral of guilt.

"What have I done?" I brought children into this world that are going to suffer endlessly from the pain that NF brings.

The thing about NF, is that it not only affects the physical outward body....It torments the soul. Breaking the spirits of people, who have the potential to become so much.

This is why I work so hard at building my children up, from the inside--out. Fueling their worth, and protecting their spirit. I will not let this monster grab hold of my babies.

I don't dwell on the fact that NF is a part of my life....In fact, I am trying to do the opposite....why not use NF to make me stronger? Wouldn't that teach that nasty, tumor filled beast a lesson?

I used to hide from NF....never admitting I had it, or that it could affect me. I had that "It can't happen to me" attitude. I threw the covers over the NF and pretended it didn't exist. I was ashamed....afraid.

Now, seeing my own children facing the unknown of NF....I want to let them know, that they don't have to be afraid. I am here. I will guide them through the darkness. Like Jesus, who is always here for us....

I will not continue to be afraid. Instead I will find strength and move foward, even during the times I am weak. My children are looking to me, to help them through the darkness.

So, as my son opens his eyes, still groggy from anesthsia, I hold his hand....and tell him how brave he is....and how truly blessed I am to have him in my life. At that moment.....I have no regrets.....just endless joy.

SHUT UP.... NF!

This stupid disease. There are some days, that I feel like such a freak. I find myself saying things like, "It's not fair!", "Why me?.....Why this?" I know I will never really know the answers to these questions...and damn it....it pisses me off so much!

The variability of NF is what gets me so angry. Why are some people affected in ways like Reggie Bibbs? Then others, you wouldn't know they have NF at all........

Does Reggie ask the same quesitons I ask? Does he find his life "unfair"? I wonder. I look at people more affected by NF, then feel like an ass for saying anything negative. But as I get older....I am seeing NF become more a part of my life.

I have embraced this NF. (I use the term embrace loosely) But I have come to a point in my life, where I need to stand for something....I want people to remember me for more than just the woman who birthed six kids and suffered financially, her whole life.

I want to be the woman who stood up for a disease that is cruel and relentless. I want people to see in me a strength. I want to be a fighter .. a lover of life.

The tumors may cover my body.....but I will NOT let them take over my soul! My heart will take action and be open to anyone who needs a friend...

I will be strong for my children, who will no doubt, suffer from the wrath of NF. I will remind them daily, how beautiful they are....and how proud I am, to be their mommy.

I will hold the hands of my children, during the blood draws, MRI's, surgery...etc

I will NOT let them see me crying for them. Instead...they will see a strong woman, who doesn't break...in times that are hard.

When I, myself am sick, or tired, or in pain from NF.....I will still find the time to snuggle and tak with my children.

See.....NF.....YOU have NOTHING over me! I will carry on with my life. YOU are a pathetic little nothing. And one day...I know, we will find a way to kill you. So that others never have to face you.

I win.

You Lose.

Here we go again...

After the symposium, I began feeling quite lucky. I prayed to God that this NF would stay "mild" and hey, I'm up for it totally going away too!!

Rachel is doing fine since the MRI and eye exam.....It seems the neurologist just wants to watch things. I was expecting that answer and have no problem with it.....I just don't understand, how something so common can have no cure or treatments.

Rachel has a fighting spirit and I am so thankful for that! She hs no problems doing the medically necessary things....(mostly cause she knows she has her Mama all to herself!)

My spunky little girl is so brave..I am so proud of her! I know we have the power inside of us to beat this....

Here we go again...........

My son has been having heaches...debilitating ones, that send him to his bed. He covers is pale body with a blanket and pulls his knees to his chest. This is one of the signs to look out for, when one has a disease like NF. I go into his room frequently to check on him, and to give him a dose of pain medication.

When day 2...3...4 and 5 go by and there isn't much change in him.....we head to the ER. I always find it interesting, when trying to explain NF to the Drs. It seems that ALL have heard of the disease, but MOST have no real clue about how incredibly random and devastating it can be. The Drs there wouldn't even address the NF. Stupid, clueless-idiots!
We spent 5 hours in the Emergency room that day, and walked away with the diagnoses of bacterial pnuemonia and migrains. The Dr. there told me to have his primary order and MRI of my sons brain. So here we go again....
It's one thing to have to undergo medical procedures yourself, but to watch your children be put through these kinds of things is very heart wrenching.
No matter what the results of the upcoming MRI, I am confident we will be okay. One thing about NF,
This "watch and wait" attitude some Drs have is pathetic.....Yeah---Let's wait until something bad happens before doing anything....? CRAP.!! Why do people go for cancer screens? ANd breast exams? It's not because they alread have something going on.....its because they want to catch something before it happens.

Anyway...I refuse to let this NF get to us....its here--yes I know its a reality....but it sure won't beat us...it lives on the bottom of my shoes....and I am determined to squash the hell out of it one day!