Interview with Rosie's mom

Please tell me about your family’s NF journey.

Rosie was born with café au lait spots and we didn’t think anything of it; I thought they were just birthmarks. At her six-month check up the doctor counted five spots on her body and mentioned neurofibromatosis,but said not to worry unless she had 6 or more. I took her home and found eight. I called him back and said, “now what?” the doctor then referred us to the NF Clinic at Children’s Memorial Hospital in Chicago. Rosie had her first NF clinic visit at 10 months old.

But it wasn’t until her third birthday that she was officially diagnosed with NF1;waiting for the official diagnoses and seeing the disorders indicators come out in her made for a very frustrating two years. Just after her diagnoses, she began randomly throwing up and was also very lethargic. Her pediatrician wanted to treat her for acid reflux, then it was “maybe she just can’t shake a virus”. But I knew in my gut something was really wrong, so I contacted the NF specialist and asked if he had seen this type of thing before. He wanted her in for an MRI that same day. The MRI revealed that she had an inoperable brain tumor and acquired obstructive hydrocephalus. It was the most devastating news I have ever received. We were faced with our child having brain surgery and placing a shunt in her brain to work as a drain for the excess fluid; it all happened so fast.

To date, Rosie has had thirteen surgeries, five of those brain surgeries due to shunt malfunctions. The other surgeries were due to other complications. NF caused the brain tumor, but the brain tumor’s location has caused all of Rosie’s other medical issues. For example: she has growth issues. At one point she was growing at a rate of 11 inches a year. It’s called Pituitary Gigantism. With Rosie, the growth hormone is on full-blast. She is the height of a nine-year-old despite being only seven. I remember when I had to buy her new shoes every month or so--it was crazy. I have to give her injections everyday to try and control the growth hormone. Since 2009, the growth hormone suppressant is working, but now I can see she’s going through another growth spurt, so we don’t know if it's working now, or needs another adjustment.

We’re running out of options with what can be done for her. With her it’s trial and error with treatment because of her particular diagnosis of NF; she has a very rare and complex case. We live day-to-day and try to make the best of it. She’s definitely a very special kid with what she’s going through. The toughest question she’s asked me was, “Am I gonna die?” Talk about heart wrenching, but we don’t lie to her, “everyone dies Rosie”, I can remember saying, “but most people just die when they’re older, like Nana.” She has seen too many kids loss their battles.

This year, her New Year’s resolution is to live to be 10. She is staying strong and living for the moment. She’s a positive kid; loving, caring and compassionate. She’ll comfort other kids in the hospital who are going through a hard time. No matter how long she’s here, she is leaving her mark on this world.

Rosie enjoys spreading joy, sunshine and hope every where she goes. She has spoken at two different high schools about blood drives and as a result they had a record number of kids sign up to donate blood;the impact she’s had is amazing. She’s also providing toys for family BINGO night for the Littlest Tumor Foundation’s Wellness Retreat. She’s raised over $300,000 for her causes and she’s collected thousands of toys for Rosie’s Toy Box. Rosie will talk to anybody and promoting her Toy Box (www.Research4Rosie.com) anywhere. She’s always busy doing something. Rosie has plans for the year for all the different things she wants to do. She even has a little rap that she has to introduce herself. She’s learned to take a challenging situation in her life and turn it into a positive one for everyone around her.

What type of neurofibromatosis does she have?

The short answer NF1. The long answer, Rosie has a very complex and extremely rare case; a combination of medical diagnoses. Her case has never been seen before or since her diagnosis. That’s the weird thing about NF, every case is so unique. It’s the same, but very different, the way NF manifests itself in each individual; it’s a mystery, so unpredictable.

Because Rosie has a very distinct set of syndromes, conditions and disorders that come together to make a very unusual case of NF. The “norms” that doctors have seen with other NF kids are atypical for Rosie. She is often times teaching her doctors, just how to treat her NF and brain tumor.

How is Rosie’s spirit through all this? I’ve heard she’s got a super-upbeat shiny personality.

She’s an amazing kid; very inspiring! She’s very charismatic and can strike up a conversation with almost anyone. I certainly can’t take all the credit for it, it’s God given. But it also has to do with the way we’ve handled all her medical issues, how we approach it. She knows she can trust us, that we are honest with her, we don’t dumb things down. We tell her in words she’ll understand and not sugar-coat things, she knows what she’s facing and she comes to terms with it on her level. I remember when Rosie was really little she was taking a bath and tried washing off a brown spot on her leg; I told her it was one of her NF spots. Later I had given her a brown-and-white spotted dog and Rosie said the dog had NF too. We told her from day one, that she had NF, how it made her special; that God made her that way and she should be proud of who she is, it’s apart of her, it doesn’t define her. I think that lots of kids have parents who want to hide it; I think it makes them feel ashamed, like it’s something they shouldn’t talk about or share.

Discuss how her sibling supports her.

Bella is very supportive of her sister, but it’s really tough on her too. She goes through a gamut of emotions with her sister’s conditions Being jealous of the attention Rosie gets, then feeling guilty for feeling jealous because she understands that Rosie has to have our attention at times, feeling angry because she got stuck with a sister with NF and cancer, but at the same time knowing Rosie didn't choose this life either. They share all the usual sibling rivalry like any other family. But she’s there for Rosie 100% and she chooses to be apart of everything, and she does have a choice, I think that’s important. When Rosie has a surgery, Bella is right there sitting on the hospital bed with Rosie, talking to her or watching TV with her before she has to go in. As for her personality, she’s a little quieter and isn’t nuts about the limelight, but she’s learned to speak her mind by listening and watching her little sister. Bella is a stronger person because of what she’s gone through with Rosie; she’s empathetic and very loving.

What are some ways your family has raised awareness for Rosie?

I publicly speak and raise awareness in anyway I can. We’ve educated family, friends, neighbors, other parents and classmates--our community really--about NF. At one time, some of the kids and even parents at Rosie's school worried that Rosie's NF was contagious. I’ve also learned that sometimes people don’t even know they have NF or weren’t told about it until later in life. Some pediatricians don’t even know about it. At least ours knew about the café au lait spots and had enough knowledge of its existence to refer us on to Children's. There have been nurses who have “heard about it” but have never come into contact with people who have had NF, while other nurses don’t even know about it. We take that opportunity to teach them; Rosie will lift up her shirt and say, "see" so they recognized it the next time they see it on another child We’ve even tried to get on Oprah and now we are pushing to meet Ellen DeGeneras. We have been incredibly blessed with all the people who have supported us; without all of their love and support we just wouldn't be able to reach as many people as we do. Both the girls were also adopted by teams through Friends of Jaycln Foundation. Rosie has two teams at North Central College in Naperville and Bella has one here in Palatine, the FREMD girls swimming and diving team. They love it! Rosie tells me everyday to live for the now, in the moment, to have hope, love and humor in our lives to say how you feel today and don't wait for tomorrow. She is a blessing in my life

What are some words of advice that you have for other families who have children with NF?

To be honest with their children and not make them feel different in a negative way. To help their child to be proud of who they are. They should surround themselves with knowledge, because knowledge is power; make a difference, get involved. We could sit around feeling sorry for ourselves, feel bad that NF has touched our lives or we could get off the couch and go do something about it. The best advice I can give to a parent of a child with NF is to be honest with your kids. I’ve met people who don’t know what to tell their children about NF. Get the support of others around you. Connect with other families who are going through what you are, who really "get it", who understand. There is this one family, whom I have never met in person, in Minnesota where they too have to cope with a loved one having NF. We support each other.

Rosie reminds us all to live life to the fullest. There’s this one commercial on TV and there is this woman standing on top of a mountain and Rosie said, “That’s the way we need to live mom.” – Overcoming everything and staying positive through whatever live throws at you.

Check out: www.Research4Rosie.com

www.youtube.com/watch?v=XaS7RMn_LXI Join: www.carepages.com/carepages/Rosiespage

Friend Rosie on Facebook! "RosieRose"

Follow Rosie on Twitter! "RockStarRosie1"

E-mail: RosiesToyBox@gmail.com

Falafel- Good and Good for you!

The first time I had falafel was in fall 2008 at the Caspian Kitchen, a now defunct restaurant, near the UW-Oshkosh college campus. The cook offered me falafel on pita bread instead of the usual gyros and I accepted. Prior to this, I had never had falafel in my life. As I ate it I thought about how good it tasted and how much could be learned from it. I vaguely knew about falafel, such as the fact that it is generally eaten throughout the Near and Middle East. With the closing of the Caspian Kitchen in 2009 that was my last encounter with this tasty and healthy dish. Fast forward to November 2011 with the Littlest Tumor Foundation.

As many of you know, LTF not only strives to find a treatment for the disorder neurofibromatosis, but also stresses a whole food plant-based diet. I was thinking that out of one of the days of the week, I would try to at least of one vegan dish. Yet, I was curious as to what the “main” dish would be. I was sick of eating noodles and vegetable soup, and I remembered that we had pre-made falafel mix at the Oshkosh Pick ’n Save because I had seen a box while facing groceries one day. I had considered driving to Appleton’s Gyros Kabob for falafel, but that I didn’t know the exactly location and I figured I’d have a good learning experience making it myself. For that week’s shopping, I went down to Pick ’n Save to get some falafel to be the “main dish” for the following lunches and dinners. I found the box of falafel and now I could make my own falafel.

Falafel proved to be a very good break from animal-based foods. I found that mixing the water and falafel mix very fun. Instead of mixing it with a spoon, I used my fingers and mashed it together like dough. I felt like a kid again. This was also the first time that I had done any pan-frying in my life as well. I also enjoyed rolling the mix into balls, because it reminded me of making cookies. For those who are concerned with the frying of falafel, a person can bake them in the oven 40 minutes at 425 and being flipped every 10 minutes as well. One of the most amazing things about falafel mix is that you can CLEARLY READ all of the ingredients on the box. There are no large words at all with twenty-something letters that only a professor can read. Falafel also is not only vegan but also kosher as well and it also is a great source of iron, fiber, low in fat without saturated or trans-fat. Who ever knew something so delicious could also be so good! As soon as I was done cooking it, I couldn’t wait to try it. I put some hummus (instead of tzatziki sauce) on pita bread along with some lettuce, onion and tomato, and topped it off with the falafel I had made. It was phenomenal. At long last, I experienced the same wonderful taste that I had from three years prior! I was so grateful to have found it once again.

I would highly recommend falafel to anyone looking for a great and healthy alternative to a meat-based sandwich and also to those who maybe are considering becoming vegetarian or even vegan. Perhaps, falafel could bring a family together. It could easily be made with children for the part with the mixing of the water and mix. But we can leave the frying (or baking) to the parents! Falafel is a terrific and healthy food that can be easily made by anyone and a great addition to anyone’s diet.