Brainstorming

Get Brain Tumors off Kids' Minds

Why Do I Do What I Do?

I’ve made it pretty clear that I started The Kortney Rose Foundation to raise money in Kortney’s memory to help other kids with brain tumors by funding lifesaving research. Hopefully in time our donations will lead to new treatments that might have fewer side effects than what they are currently using for these kids. While this is the main reason, as I’ve traveled through this journey of losing Kortney, and starting a foundation in her name, I have learned so much more about the other reasons I do what I do.

Today I brought in pizzas for the winning class at the Betty McElmon Elementary School in West Long Branch, NJ. This third grade class had raised the most money during the month of March for the Kortney’s Coins for the Cure Fundraiser. All of a sudden I realized that Kortney was in third grade which caused me to pause, look at the children in front me, and realize how young Kortney was.

I really love little kids and knew they would be excited to tell me how they raised their money for the fundraiser, so I asked. They had the cutest answers. One little girl said, “There is always money under my bed.” Another said, “I went through our closets and the couch.” After they enjoyed their pizza someone asked, “Are you Kortney’s mother?” When I said yes, there was a whole new energy in the room. A couple of students said, “I’m sorry.” I was absolutely shocked that a 9 year old child would have the wherewithal to know to say they were sorry to me. I had another little girl come up to me say, “You are wonderful and the next time you pray to Kortney tell her she was great too.” This really touched me and the tears were welling up in the corners of my eyes. I quickly said, “Yes, I was Kortney’s mother so you know when I say thank you for raising money to help other kids, I really mean it.” One little boy then yelled out, “To get brain tumors off kids’ minds.” Again, I paused surprised that a young child would even know that slogan. Wow! Many deep breaths later, I left the school. As often happens, I can keep my composure in a situation but as soon as I leave it, I will cry. It makes me miss Kortney at these times and reminds me why I have to do what I do and then I look at what we’re accomplishing! We are inspiring young children to help others and teaching them to make a difference in the world. After she introduced me to the class, the teacher said the most powerful message. She said, “What are we learning from this? That when you do good things for others, good comes back to you.” I am trying to do good for other kids with brain tumors, but the lessons I’ve learned and the kindness I’ve seen expressed along the way, make it all the more worthwhile. To know that something I did has had a hand in inspiring a young child is truly an amazing feeling. I do so much on a daily basis for the foundation and can sometimes get lost in the minutia, but something like today’s encounter with these sweet children reminds me why I do what I do.

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Happy New Year

Happy New Year to all a little late, but with the same heartfelt sincerity.

In years past the holidays for me meant trying not to miss Kortney too much and just getting through it with the best attitude I could. Remarkably, this past Christmas season was the best I’ve had mentally since losing Kortney. I guess that it’s true that time heals. Of course I still miss her, but the strange thing is I miss the 9 year old version of her because I don’t know what the 17 year old version would be. Based on her bubbly, outgoing personality with a need to always have a friend around, I feel like she would’ve been a very social teenager with lots of things going on. Sometimes I think that her impishness would also have brought with it some interesting times. While a sweet and loving girl, she hung out with girls several years older than her and seemed to be learning things advanced for her age. I often joke with the moms of Kortney’s best friends that the teenage years might’ve been interesting. Thinking of my daughter Kasey at 9 and experiencing the wonderful person she has become at 20 often makes me ponder this. Kasey has surprised me and surpassed my expectations of her over and over again. That is the hardest part about losing a child for me. In the beginning I missed everything about her, her voice, her presence, her smell, her touch, her laugh, her jokes, her words, and anything and everything. As time has gone on and those memories have unfortunately faded somewhat, and I miss the person she would’ve become and can’t fathom what she would look like.

Right after we lost her I thought about paying a service to do an age progression on her photo so I could envision what she would look like older. I didn’t do it. I still think about doing it from time to time. One time I said to Kasey, “I wonder what Kortney would look like now.” She said, “I think she would’ve been prettier than me.” As I said, she constantly surprises me. Kasey is beautiful, if I do say so myself, and I just expected her to say she didn’t know.

In the past year I’ve become involved with other families who currently have a child in treatment with a brain tumor, lost a child to a brain tumor, or have been cleared after having a brain tumor. To have all of these other children on my mind has made me focus less on Kortney and more on them. This year I thought of how difficult it must’ve been for my friends Sue and John who lost beautiful Hannah in September. The first holiday is truly horrible! I really felt for them. I thought about Alex and his family going through his therapy which has left him weak, sick and not able to enjoy the holiday like they should’ve. Not ideal! I thought with happiness of Dominic’s family and thought of the joy they all must’ve had this Christmas after Dominic was cleared and cancer free, five years after surgery to remove a brain tumor.

I know about other children and family struggling with brain tumors, but don’t have intimate knowledge of their situations. I wish I didn’t have to know about any children with brain tumors, but since that’s not reality I will work hard to try to achieve a world without them while I can!

The Kortney Rose Foundation saved my life after losing Kortney. It gave me something positive to focus on in a negative, negative situation that I couldn’t control. I had to work toward an answer for other kids since there were none for my own. Now I can’t imagine not having this work in my life. It is so meaningful and while it can consume my life alot of the time, I am grateful that we have been able to raise so much money for research. I hope to see something discovered in my lifetime for these kids. It’s so hard to explain to people that finding cures or better treatments requires years and years of research to find one thing and it requires millions and millions of dollars in research funding. We may not see a cure tomorrow or next year, but it’s coming. Researchers say that the next few years should be very telling for cancer research. I have read it over and over that research happens quicker now than it ever has in decades and that the promise is there. I have to hold onto that. I am a very project oriented person. I like to work on a project and see a final tangible result of my hard work. Research isn’t like that and at times I feel frustrated and wonder if what we are doing will make a difference. I have to believe it will. We can’t rely on federal funding of research, so foundations like ours are key to keep this life saving research moving forward. Our children’s lives rely on it!

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7th annual donation trumps last year’s

The Kortney Rose Foundation (KRF) is excited to announce that the 2013 annual donation to the pediatric brain tumor research program at the Children’s Hospital of Philadelphia (CHOP) is $120,000. This brings our total donated in seven years to $748,000.

We are so grateful to all of our supporters for making this a larger donation than last year. We especially would like to thank the families and friends of children who know first-hand how important research into better treatments and cures for brain tumors are. We are very happy to see that our outreach has grown. In addition to general donations and those made in Kortney’s memory, we were honored that the Funck Family chose to support brain tumor research through KRF in their daughter Hannah Duffy’s memory. Hannah was a very special girl who unfortunately passed away this past September and touched many people she knew and didn’t know. She and Kortney were kindred spirits and Hannah’s mom and I believe they are hanging out together having all kinds of fun. Another child whose family remembers him annually with donations is 19 year old Matthew Remer who passed about three years ago. Funds were also raised to honor Alex Munoz who is currently in treatment at CHOP and Dominic Vigorito who was released from CHOP treatment after five years of being cancer free.

It’s hard to say we “celebrate” these children. It’s sad that we need to raise money in their name or any other child’s name. While none of their parents “want” to have to raise money in their child’s name, they do it to help future children who will be diagnosed with a brain tumor. The only hope these children have is that one of the projects being conducted in research will hit the bullseye and give them a chance at less harsh treatments or life itself.

If you’ve been following my blog you know that I’ve personally been struggling with vertigo. When I start to feel sorry for myself I kick myself and ask myself how I can feel bad for myself when this is nothing compared to what all of these kids have endured. It could be so much worse and I’ve survived much much worse. No matter how long my vertigo lasts I am going to think of Alex who is in chemotherapy or the Funck family who is going through their first Christmas without their beautiful Hannah. Or Matthew’s family, our family who will endure yet another Christmas without our children. The loss is always there. We can choose to have it paralyze us or try to make a difference. I chose the latter and am so grateful to everyone who continues to support us. Even if you donate $5, $10 or $20, don’t feel like it’s not enough. Every year those donations add up to substantial donations of $100,000 plus.

Thank you for following my journey. I hope you will encourage others to learn more about pediatric brain tumors by sharing this blog, our website and Facebook/Twitter page with them. I need help spreading this information. It’s so important and we need the power of social media to step it up and help us out.

Merry Christmas and Happy New Year and thank you for
Helping to Get Brain Tumors Off Kids’ Minds!

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8 years ago today our lives were forever changed

Eight years ago today we were given the devestating news that no parent ever wants to hear, your child has a brain tumor. It just got worse from there as we were told 9 year old Kortney’s tumor was inoperable and chemo and radiation would buy her a little more time because there was (is) no treatment/cure for a brainstem glioma. Talking to every specialist, scouring the internet for possible treatments and all the prayers in the world couldn’t help the inevitable…that Kortney would die. I know this is upsetting to most of you to read, and every parent who reads this will feel empathatic and thankful it isn’t their child. Brain tumors aren’t selective, any child can get one. They don’t discrimiate based on color, race or creed. They are an equal opportunity devestator.

At Christmas time I really miss Kortney because she loved to decorate and do all kinds of holiday things. I miss just having little kids that make Christmas so much more fun. Recently I found out I could have our old VCR tapes converted to DVDs. I began frantically collecting all of the tapes of Kasey and Kortney as babies and children to send off. Before I sent them off I wanted to watch them. At first I was enthralled since I had forgotten alot of  their childhoods and these videos brought back great memories. Both of our girls were the happiest kids and each has a very distinct personality. I laughed at their antics. My husband was petrified to watch them and was afraid if I watched them they would upset me. When he saw me smiling and laughing while watching the videos he joined in and we laughed together. He was surprised that he was able to watch and actually enjoyed them. Fast forward a day, I felt a huge longing and missing of Kortney that I didn’t want to admit to my husband for fear he would say, “I told you so.” I admitted it to him, and he admitted that two days after watching the videos, he was also sad and missing Kortney more. We talked about it and came to the conclusion that we really missed and were mourning both of our daughters as babies and little children. It wasn’t all about Kortney, though in large part was. We missed Kasey as a young girl too.

It’s hard when your children have grown. I have a fear of forgetting details about Kortney. That was the original reason for getting the DVDs updated.  But the fact is that these videos are important to remember Kasey, as a child, too. Thank goodness there is this technology.

I will never forget that day 8 years ago today. I don’t need any VCR/DVD memory for that. Unfortunately it is forever ingrained in my memory. Will I watch the DVDs once they are converted? I’m not sure, but I just will be comfortable knowing that Kortney’s memory will be preserved should I want to.

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Vertigo no fun but telling

Last Saturday morning I woke up and went to get out of bed and the world spun around me. I quickly fell back on the bed and refused to move. More than anything I hate to vomit. I will do anything not to. I had to call my husband home from work since I couldn’t move. I refused to try to get up for 4 hours. I know, I’m a baby, lol. Saturday and Sunday were spent sitting on our couch looking straight ahead watching TV.  The funny thing is I always tell my husband, Rich, I just want to sit on the couch and watch movies all weekend.  I never do that because I usually have too much to do and would feel guilty doing so.  Last weekend I got that wish. Actually I got that wish for Monday and Tuesday too. What all of this did was remind me to be grateful for feeling good. I know that Kortney, Alex, Hannah and all of the other kids who’ve endured cancer have probably had vertigo as part of a brain tumor either from side effects of the tumor or from radiation treatment. While having vertigo was not fun I realized that what our kids have endured and some continue to live with is just not fair and we need to do everything in our power to help them. I have devoted myself to this cause. How about you?

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Happy Birthday Kortney!

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This is a photo of Kortney at her 9th birthday party on November 27, 2005, two weeks before her diagnosis. It is unbelievable to me that she would’ve been 17 years old today. That is not imaginable in my mind. I will always remember her like this. I wonder what she would look like and what she would be interested in. While it is a day of missing her it is also a day I have to remember all the good that has come out of her passing. I often speak in classes in the university where I work on community health and becoming an advocate. I start each class by asking people to raise their hands if they’ve heard of Childhood Leukemia and mostly every student raises their hands. I ask how many have heard of Childhood Brain Tumors and maybe 2 or 3 raise their hands. My mission, in Kortney’s memory, is to make everyone aware of brain tumors in children just like they know about Leukemia in kids. Recently I was speaking to a class of 7th graders at Maple Place Middle School in our town. I started with the same question I ask of the college students. When I asked about Leukemia every hand went up..When I asked about brain tumors…EVERY hand went up. This was a day I will always remember. Even if we have brought awareness to our one little town of Oceanport, we have accomplished alot!

I will do what I always do on Kortney’s birthday and go to Toys R Us and buy all of the birthday presents I would’ve bought for Kortney at age 9 and donate them to a toy drive. This keeps Kortney’s playing and giving spirit alive in many ways. Normally I would be taking Kortney for her driving exam today. It’s hard to watch her friends get older and go through milestones like this. I ask you all to give your children an extra hug and to be grateful for every little moment with them as we enter the holiday season. HAPPY BIRTHDAY KORTNEY!

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