Day Two of NIH testing

The time spent here, has been amazing! The hotel room is nice....and the people have been awesome! We are truly blessed to be able to be a part of this study. I am thankful to all the wonderful doctors, nurses, and specialists who have decided to learn more about NF.
The morning went a bit smoother than yesterday. We woke up, had breakfast, and caught the shuttle to NIH. We were like old pros with the check in process and security.
We started the morning out with an echo cardiogram. It went fine, and took less than a half hour. The “echo” was looking at the heart in every angel....seeing if there are any abnormalities. Some 'Nfers'...have issues with some of the muscle that lines the heart. The tech looks at blood flow, counts beats, measures...then inputs that info, into a database were all the other NF info is. They will chart this info and note any similarities between each NF patient.
Mikey was joking, and in good spirits when we left. However, when I told him that we were headed to the dental clinic, he began a spiral turn downwards. He was afraid and embarrassed. I tried to talk to him...reassure him. I have seen Mike like this before....but I was truly taken back by his behavior. I hugged him and told him it was okay. Talk of suicide and hateful awful words came out of his mouth. He told me that NF was the worst thing in the world. He hated himself, and simply wanted to die.
When someone doesn't take care of themselves, then has to deal with the repercussions, it's not fun. The dental clinic, found what Mike already knew. He has some major dental problems....he was ashamed and afraid he'd get yelled at or looked down on. None of that happened. He was treated with respect and caring hands. They asked about his mass on his cheek....we were impressed that they wanted to know more....and will be referring Mikey to places in SLC.
I had to take Mike aside, tell him that his behavior was unacceptable. The talk of suicide will stop. I told him how important he is to me....to everyone he comes in contact with.
We had lunch and got him settled down a bit. It was nice to not be in such a rush. Yesterday feels like a blur....I can barely remember everything that happened (good thing I blogged as the day went on) We took our time eating...I called Dad to fill him in on things.
The last meeting with Dr. Stewart and Sarah....was to talk about the MRI....from the previous day, and to take pictures of our eyes. We had a nice lady come in to talk to us about Mikey's mass....and we worked out a plan to follow up with Mike's Neuro-surgeon.
I was invited to come back to NIH in a few months – for surgery on a mass the MRI picked up on my left hand. I was told to 'think about it', but why would I turn that down? The free surgery isn't the reason for my excitement....instead, I would be continuing to give back....offering information about the type of mass I have. An added benefit would be, of course that it would be covered in full....but also, relieving the pain, that I thought could never be fixed.
After saying good-bye to Dr. Stewart and Sarah Coombes....I headed to my spinal MRI. I have to say....I was so happy that our waiting was at a minimum. The IV was placed...(after 4 pokes) and I was sent into the MRI “tomb”.
My eyes were so heavy, as I lay there. The sounds of the machine, clunking and twirling around me. It was cold, then warm, then cold again. I thought about my brother. He was just simply verbalizing, what I feel sometimes. I get so frustrated with having NF, that I could easily fall into a pit of despair. I thought about his words...”This is the worst thing in the world”. I said a small prayer for Mike....for him to understand, how things could be so much worse.
I actually feel good. NF or whatever....it doesn't matter in the grand scheme of life. I am happy. I have a very full, very blessed life. I am surrounded by so many people who love me.....(even if my 8 yr old says she was beginning to forget what I look like-----I guess being gone for 4 days is out of the question, in the future...LOL) So I may never be a supermodel, with perfect skin and teeth. So I may never weigh 90 pounds and be 5'10”. That all doesn't matter. I have God in my heart, a sharp mind, wonderful family and close friends. What more does a person really need?
Thank you to NIH and all those involved with the study for NF1. Keep going, keep searching! We Nfers are blessed to have you questing for treatments!
God Bless!

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!