Discussion with President Barack Obama about Neurofibromatosis

THE WHITE HOUSE

Office of the Press Secretary

___________________________________________________________

For Immediate Release

September 22, 2010

REMARKS BY THE PRESIDENT

IN A BACKYARD DISCUSSION ON HEALTH CARE REFORM

AND THE PATIENT’S BILL OF RIGHTS

Brayshaw Residence

Falls Church, Virginia

11:59 A.M. EDT

THE PRESIDENT: Anyone else? I know it’s warm out here, but I want to hear from as many people as I can. Go ahead.

Q Hi. Thank you so much, Mr. President, for having us here. I want to thank you. I just have a comment. My son, Sammy, who was here, is seven and he has neurofibromatosis. I don’t know, have you ever heard of it?

THE PRESIDENT: You know, I’ve heard of it. But you should describe for us what that means.

Q It means that he had a spontaneous mutation on his chromosome. And he was diagnosed two and a half years ago. And it just basically means your tumor suppressor doesn’t work properly, so every nerve cell has the potential of becoming a tumor.

THE PRESIDENT: Which is pretty nerve-wracking for mom.

Q Oh, it’s unbelievable. And there’s a wide spectrum, so some people end up with minor complications but others have serious problems. And he’s already had surgeries and things of that nature. So I just want to thank you and the Secretary and congressmen and senators, because it’s life changing for a parent.

THE PRESIDENT: Well, Sammy looks terrific. I saw him running around here.

Q He is terrific.

THE PRESIDENT: And I’m just glad to give you peace of mind. Look, people ask me sort of how do I stay calm in my job. The reason I stay calm in my job is that every night at six-thirty, no matter how busy I am, I go upstairs -- I’ve got a very short commute -- (laughter) -- and I go upstairs and I have dinner with my wife and my daughters. And as long as they’re doing good, as long as they’re healthy and happy and running around and telling me stories about the crazy things that happened at school today, then there’s a certain baseline that just gives you that sense, well, I can take anything, right?

Now, the flipside is when Malia or Sasha get a sniffle, or an ear infection, or a scrape, or a bruise, I’m over there just miserable. And I still remember Sasha, when she was three months old, one night she just wasn’t crying right. As a parent, you start recognizing, that’s not how she cries. She wasn’t hungry, it wasn’t a diaper change. Something was going on.

So we called our pediatrician, and he said, “Well, why don’t you bring her down?” And this was in the middle of the night. This is like one o’clock in the morning. And he was willing to see her, and he pressed on top of her head, and he said, “You know, she may have meningitis; I want you to go to the emergency room.”

And it turned out she had meningitis, and she had to get a spinal tap, and they had to keep her there for three or four days. And the doctor was talking about if this didn’t -- if her temperature didn’t come down and if we didn’t solve this, she could have permanent damage to her hearing or other effects.

But I still remember that feeling of just desperation, watching the nurse take her away to provide treatment for her. But I was thinking, what if I hadn’t had insurance? What if I was looking at my bank account and I didn’t have the money to cover her? How would I be able to face my wife, and how would I be able to look in the mirror if I didn’t feel like I could somehow make sure they were okay?

And that’s what this is about, ultimately. I mean, we’ve got to make sure that health care -- our health care dollars are used smartly. We’ve got to make the system work better for consumers. We’ve got to make it more responsive. But ultimately, the thing that’s most important is, we’ve just got to give people some basic peace of mind. And I’m just so glad that I’m able to stand here before you and hear these stories, and hopefully it gives you a little more peace of mind. (Applause.)

So, all right, well, thank you, everybody. Appreciate you. And if anybody else has any questions, they can come up and we can chat in the shade here. (Laughter.) Because I don’t have to go right away, and maybe we can -- these guys will take some pictures. So thank you.

END 12:42 P.M. EDT

Juli Novotny --- Pure Mamas blogger--Smoothies and Popsicles.

Nutrition can be a very sticky subject when it comes to children and babies. They are some of the pickiest of eaters yet the most active {constantly learning new things, playing, running, swimming, jumping, falling, etc.}, and frustrated. Therefore proper nutrition is crucial for them.

Multiply the above by 10 and you have handicapped or ill child. These children are even more in need of nutrition and also that much pickier and more difficult to get to eat healthy food.

A really great way to pack in nutrition is with a blender and/or a popsicle stick. Fresh homemade smoothies are great because you can customize what goes into them. For instance you can add all kinds of local and organic fruits from the farmer's markets. You can make them really cold, really thick or not at all. You can also add very important supplements like Omega 3 oils, probiotics, even green powders and protein powders in small amounts so that the children won't even know it's in there.

If you child likes milk, add it. If your child is allergic or doesn't drink milk {mine don't} then add almond milk, lemonade or fresh squeezed orange juice and water as a base. You can also then add sweeteners or not, depending on your child's taste buds.

There are so many different kinds of things you can do with a blender that will amaze you AND your children. If you find a drink you and your child enjoys, then freeze it in a popsicle mold and eat it later while sitting in the sun.

I'm not going to go into which supplements are good for children with tumors or any other specific illness or disease because I'm not a doctor. But once you get the go-ahead for probiotics or algae or whatnot, ADD SOME DROPS OR TEASPOONS IT TO A SMOOTHIE.

MANGO PROTEIN RECIPE

- 2 cups Almond Milk

- 1 cup Frozen Mangos or any other fruit you enjoy.

- 1 Ripe Banana

- 1/2 c Green Juice {or greens powder}

- 1 Tbls Agave Nectar {optional}

- Rice Protein Powder {1/2 scoop}

- ADD PROBIOTICS OR FLAX OIL IF YOU'D LIKE

Mix in a blend until smooth. It should be REALLY creamy

tip: leave out the agave if you are giving it to little kids.

CANTALOUPE / WATERMELON FROZEN JUICE RECIPE

1 Cantaloupe {or watermelon}, ripe organic & in season

7 Ice cubes

1 Tbls agave nectar {optional}

Cut open the cantaloupe, remove the seeds and scoop out the fruit. Blend it on high for like 20 seconds. Then I put remained of ingredients in a blender and blended until it was smooth {with only a few ice chunks left}!

MY SON got mad at me and threw a tantrum when I told him to try it!!!! I said "just try it once and you'll be done" he tried it and then gulped the rest of it down. It was THAT good.

GREEN DRINK RECIPE

1 large slice (about 5 chunks) frozen pineapple
1/3c parsley or spinach
1/4 cucumber, peeled
1 juice of a lemon

1 sliver/chunk ginger root
1c fresh orange juice
1/2 dropper of liquid stevia OR 2 Tbls agave nectar

* any supplements you may need to add like say a protein powder?

BLEND TOGETHER IN BLENDER ON HIGH UNTIL REALLY SMOOTH WITHOUT CHUNKS.

If you can get your child to drink a small bit of this everyday you won't have to worry too much about "veggies" and eating their "green" foods. But of course it's always good to encourage eating vegetables and to get them used to eating "real" green foods.

POPSICLE RECIPE

2 large lemons
1/4 cucumber, peeled
3 Tbls agave nectar

1/4c water

BLEND TOGETHER IN BLENDER ON HIGH UNTIL REALLY SMOOTH WITHOUT ANY CHUNKS. Then add to popsicle mold and freeze. You can also do this with homemade fresh squeezed orange juice as well.

Have fun and remember to use fruits, vegetables and sweetners and liquids that your children already like to ensure they will drink it. You can easily add any greens like spinach or parsley or cilantro to a drink and mask it with the other dominate fruits or sweeteners or liquids.

Also remember to try new types of fruits. You never know, kids often don't like things the first time but then LOVE things the second or even third time around.

Good Luck!

Please check out Juli's blog at www.puremamas.com and her company at www.kookiekarma.com

No More Hiding--Guest Blogger Kristi Hopkins

No More Hiding I had a good friend of mine tell me that they had no idea our family had the NF diagnoses...she felt bad because she thought she was living in some bubble, or just not paying attention. Neither are true...She didn't know because I was doing my job in hiding it. I felt I was succeeding, because those around me, couldn't see it. Even Drs. couldn't see it, or recognize it. I had gone through countless physicals, and 5 pregnancies before NF would ever be brought up. I had the bumps, but somehow, the NF got overlooked. It was like I'd hold my breath and just wait, then let out a sigh of relief, when I'd make through yet another appointment. I hated “hiding” my NF, but I felt that if I was fooling others, especially doctors, maybe I could fool myself. It turns out, that's the only person, I was really truly fooling....Me. This hiding did catch up to me...In a huge way. One doctor would recognize Neurofibromatosis on my body, then shame me for bringing children into the world. I laid there exposed as the doctor ran the doppler over my 38 wk pregnant belly. “This looks like Neurofibromatosis” she said. When she saw the bumps. I closed my eyes, not wanting to hear that word, directed at me, but I had no where to run. No covers to hide under. The doctors next words would crush me. “Well, it's too late to do anything about this now...You're 38 wks pregnant.” I knew exactly where she was going with this. I just closed my eyes, and told her about my 5 happy and healthy children at home, and that I expected no different outcome from this pregnancy. But as I left the doctors office that day, a crushing realization hit me so hard, I could barely drive home. Shaking and crying, I began realizing that I had hid for 33 yrs. In some way or another, part of me died during that ride home....but another part of me became alive. I was scared to accept my reality, but this was the time to do it. No more running, no more hiding. I had brought real people into this world, who needed a voice. Three of my children already had the earmarkings for a diagnoses (cafe au laits and freckling under the arms and around the neck) but I didn't take them into be “officially” diagnosed by a geneticist. After Brooklyn was born, I examined her immediately. I know that with my other children, NF wouldn't show itself until a few weeks after their birth, but each day, I would get my baby undressed and scan every inch of her. She doesn't have NF, and I thank God everyday for that. But 3 of my children do. And I have to work hard, so that THEY never feel like they have to run and hide and feel ashamed. I teach them to love who they are, and not to be defined but what they have. In truth, I was hiding NF from ME more than anyone else. If nobody could see it, if it wasn't showing up on the outside, maybe it didn't really exist on the inside. Even after 'outing' myself, my friend is still my friend, and I've found many, many more friends since accepting, embracing, and choosing to Thrive with NF. I've also reconnected with my best friend, one who I spent years never trusting with the truth: Myself. -Kristi Krisit's blog and website: www.thrivingwithnf.com

Sam i am ... love that sam

It has been a very busy time in our lives. Our Sami did indeed have surgery. He actually had PET, MRI, 1st opinion, 2nd opinion, surgery, post-op, pathology, post-op. We now wait for the next MRI coming up next month. We will stay positive that this tumor never returns and the ones on his spine do not grow. But if they do there will already be a treatment developed to deal with them. It can be done. I thought I would write a little from his perspective. He awoke from surgery and asked the surgeon, " Did you get the tumor out?" He then asked to see it. He very much wanted to bring the tumor to his science class as he just knew his teacher Miss Becky would really want to see it. Sami has such an energy about him it is infectious. He later told me he no longer has NF he only has N because the surgery got rid of the F. He is very happy this tumor is out and put away his special blanket my aunt sent him. He wrapped himself in it during the whole ordeal nightly saying it protected him and was healing him. Afterwards, he said he does not need it now but will use it again if he gets another tumor. So, our Sami does at the young age of seven understands what NF means. We his family are amazed by his spirit.

Special Guest Blogger Maureen Hotchkiss

Your Kitchen - mix up more than just good food!

By Maureen Hotchkiss,

Kids Central Kitchen, LLC

School isn’t the only place where your kids can go to learn. You may not have thought about it before, but you have an outstanding learning center right in your own home. Your kitchen!

Baking with your kids can be an excellent learning opportunity! Enhance reading skills by encouraging your children to read and follow simple recipe instructions. Exercise math skills through the measuring and weighing of ingredients. Setting a timer helps with the concept of time. Waiting helps develop the virtue of patience. Creating is important for boosting self confidence. Pride comes from a job well done. Don’t forget to include them in the clean-up process. This is an important life skill that you will certainly find helpful for many years to come! Spending time together in the kitchen also provides excellent bonding experiences for children and parents. And, have you ever noticed that kids are more apt to eat something they’ve helped prepare?

As great as this may sound, the reality is, life gets busy and can throw curve balls now and then. Even on those days when you may find extra time to bake with your kids, you may realize you don’t have all the necessary ingredients. As parents of three active kids, we often found such reasons for not taking the time to bake with them. At the same time, we were becoming increasingly concerned about what they were eating. The alarms went off one day when I looked over the ingredient list and nutrition statement on a name brand oatmeal bar that was supposed to be “healthy.” Here I had been offering my children something with ingredients I didn’t recognize (was this a science project?) and 25 grams of sugar per bar. It pushed me over the edge!

This aha moment made us realize we had to commit to creating healthier snack options. Lack of time could not be an excuse any longer. We experimented for months in our kitchen to create healthier versions to some of their favorite snacks. In our ongoing quest, we noticed the enthusiasm of children grow as they helped us measure, mix, bake and eat our creations. Every time we began rooting around the kitchen, all three children would stop whatever they were doing to come join us.

Eventually we turned our recipes into dry baking mixes we could have on hand to use as needed. We began sharing them with family and friends to enjoy as well. This idea eventually evolved into our family business, Kids Central Kitchen (www.kidscentralkitchen.com). We offer natural, whole grain baking mixes for active kids and their families. We left out all the yucky stuff like trans fats, hydrogenated oils, high fructose corn syrup, refined sugar, artificial flavors, artificial colors and preservatives. Simply add the wholesome wet ingredients (like applesauce and yogurt), mix and bake. It’s fun, easy, healthy and educational! Perfect for those times when you don’t have a lot of time, a lot of ingredients or both! We also offer a new gluten-free baking mix.

Next time you’re looking for an activity for your children, grab a big bowl and spoon and mix up some healthy (and educational) family fun!

NF KIds

Our blog is about wellness, but today we will add a bit about what NF kids go through. Our guest blogger is an NF mom Amie Broeniman her 7 year old Emma has NF. Life had been fairly routine with Thursday Chemo's until an eye exam about 2 weeks ago when suddenly we came to the realization that Emma was seeing NOTHING out of her left eye. Time to move the the MRI up and change course. So we had an MRI in 2 days and the tumor has changed a little and with the clinical changes we were on to chemo #3! This is where I wanted to be 5 months ago I am trying hard not to think about all the time, gas and energy was wasted in the past 5 months.

We started the new chemo which is called Avastin/CPT11 yesterday, 2 years after we started the first chemo. The oncologist said to us "The protocol is 2 years but if things are going well we will keep going after the 2 years!" I can't even let my mind go to the fact that by time she is 10 she will have spent almost half of her life in chemo. I feel strongly though this chemo will work and the tumor will shrink..
The good thing with this new chemo is the fact that it is every other week so we will get a break from our travels. The side effects or potential side effects are a bit scary but we will deal with them if we have to and hopefully other then the sickiness ones we wont have any and I will gladly clean up vomit poop what ever if this %#@#$ would just stabilize.
So I am hoping with a break here and there I will have a little more inspiration to write.

Plexiform Tumor Treatment

,I met with researcher Dr. Whalen at Children's Hospital Milwaukee. He took the time to talk to me about his research that is close to entering human trials. He has been working on Photodynamic Therapy (PDT). He described the therapy as a chemo drug with a light switch. It is tumor cell specific. A heme designed infer red sensitive chemo drug will only activate with a light source. His colleague at the University of Florida has had great success in animal models. They have implanted dermal and plexiform neurofibromas from humans and had great success with the PDT. He described it as tumors melting away. They have had great success with chemical, cell and animal trials. The pilot will focus on dermal superficial tumors and if successful will then move onto deeper plexiform neurofibromas. Systemic side effects have been minimal and the treatment is minimally invasive. This will be an exciting undertaking if this project gets funded and off the ground. As a parent of a child with Neurofibromatosis, it gives me such hope new therapies are on the horizon for a disease with no treatment. There are other new promising therapies which we will report on in June after the big Children's Tumor Foundation conference focused on research. Stay tuned.