Natalie Fleischaker's Journal
6 months- Remembering, celebrating, honoring & making a difference
Written Nov 2, 2013 9:13am by Ashley & Steve Fleischaker
Hard to believe it's November- the color of the leaves on the trees is phenomenally beautiful, the best we've seen in years which tells me our Natalie is up there taking charge & running the show already. Every bit of this is hard including just being normal.6 months ago today (November 7th) was the last day Natalie got up, the last day she talked, walked, smiled. Remembering lasts is still so surreal. However remembering is soooooo important, it helps us keep going. So does celebrating firsts and we have so many things to celebrate. Coming up we have Meg's 1st birthday and one month from today our first marathon. We made it through our first Halloween and are preparing for our first Thanksgiving then our first Christmas. Every first is missing something, someone and that missing piece is HUGE.
Team Natalie has grown to include those who saw her everyday & knew her better than anybody and those who never met her in person but who naturally joined the Team through their connection to Nat through us, her grandparents, our friends, extended family, co-workers & many, many more. All of you probably know that Natalie LOVED Halloween! So naturally this has been a tough week. Tough in that we miss the absolutely genuine & raw love Natalie put into developing & creating from scratch her Halloween costume ideas & tough in seeing so many of her hundreds of friends & family celebrate La Dia De Los Muertos without her.Last year October 31 represented a milestone, the day she "really" came home. The two worlds merged w/ her best St. Jude day folding into her first day at home. Two trick-or-treats divided by hundreds of miles & one plane ride but both emerged in the happiness of showing off perhaps her best & unfortunately her last costume creation- the triple layered birthday cake. So while last October 31 brought so much pleasure, this one brought a lot of sadness.For those that have lost loved ones you know how everyone talks about the difficulty of holidays & generally you assume they are talking about Thanksgiving, Christmas, birthdays & anniversaries. But perhaps surprisingly I woke up w/ tears in my eyes on Halloween & they continued throughout the day. As I've come to learn the hardest days include some of the best memories & all you can do is do your best to focus on the good & let it triumph over the sad. So our Thursday was blessed to include Jack the Werewolf, Emily the Pop Star & Meg (Natalie's 11+ month old puppy who is just shy of her first birthday) the Police dog. Daddy even got in on the act in honoring Natalie by creating his own "simple" costume w/ $2 & 5 minutes of time to become the Great Pumpkin. Natalie's friends came to visit & reminded us that she's here & part of their lives every single day, never leaving their side. Don't ever underestimate how great the smile of a 9-year old can be, especially when they sheepishly tell you that they think of their friend every day (when you presume they stopped thinking of her on May 11, 2013).The problem with blogging on her so infrequently is that you have waaaaaaay too much to say once you do. Many people ask all of us "how are you doing?" The askers probably know the answer & fortunately for many we answer the question based on our emotionally compass that day but most of the time the answer of "okay" is an honest answer. There are days when we all cry- individually, together, sometimes both. There are other days when everything feels totally fine. Today is a good day.One of the things that keeps us moving forward is our absolute commitment to making a difference in the fight against pediatric brain rumors & other cancers. Hating this disease is easy but figuring out the right way to disburse your energy in the most effective & productive way is a full time job. Unfortunately (or maybe fortunately) we can't drop everything the way we want to & focus solely on changing the outcomes for other DIPG patients & their families. But, we will continue to do every little bit we can as time permits w/ the goal of working smarter rather than harder to make a difference.The best way we can do that is in providing all of you that are members of Team Natalie w/ information and opportunities to help. Help us raise awareness, raise funding, unite families that are as passionate as ours, get congressmen & senators to pay attention, find private dollars to compliment public in a world full of angst about non-profits & whether they can properly use the dollars we donate to find cures & improve treatments instead of funding salaries or other non-essential expenses.
We're still reviewing all our options to identify our best option in order to make the biggest difference in this battle. This may include forming our own foundation or supporting existing organizations that we feel are truly committed to battling pediatric brain tumors. In the mean time we are continuing to support the organizations that have meant so much to us throughout our journey including St. Jude where they have hundreds if not thousands of medical professionals working to find cures & save children's lives. There are a couple St. Jude fundraising events coming up that we'd like you to consider supporting.
The first is the St. Jude Give Thanks Walk which is scheduled for Saturday November 23rd. This event involves individuals & teams participating in a fundraising & awareness walk in various cities around the country. Last year our college friend Tricia organized Team Natalie for the Kansas City walk and we were so honored to be part of the largest team participating in the walk. The more than 80 strong ranged from as young as 1 to as old as 72, it included friends and family from hundreds of miles away & just around the corner. Together we raised more than $13,000 which was the most of any team in the Kansas City walk.
Team Natalie has re-upped for the 2013 walk and while we don't expect to see nearly as many people this year it means so much that any of you who is willing and able joins us on Saturday the 23rd. You can choose to raise money if you want or you can just come out and walk. Please click on this website for more information & to register to join us. http://fundraising.stjude.org/site/TR/Walk/Walk?team_id=40191&pg=team&fr_id=8289
If you have any trouble accessing the link please let us know & we'll send a separate link.
Our second and possibly biggest event is the Memphis St. Jude Marathon on Saturday December 7th. That's right, I said MARATHON! We understand this to be a very special event and several Team Natalie members have committed to participate in the various races associated with the St. Jude Marathon this year. The range from Natalie's Uncle Taylor who will complete his first ever full marathon to friends Sue and Andrea that are doing the 1/2 marathon on down to Natalie's cousins Gabe & Grady along w/ their mom Aunt Jessica who will do the 5K. Jack & Emily are going to join their friend Caroline and Miss Kerry as well as their Granny Lu & Poppa Gale in the 1 mile Family Fun Run/Walk.
Ashley and I formed a 5 person relay team to do the full marathon with Ashley running the opening leg and me the finishing leg. My first training exercise started on the morning of Natalie's memorial service & I've continued somewhat consistently toward being ready to complete my 6.55 mile leg in my first ever organized race. It has been challenging & rewarding but nothing I face can ever be as hard as what Natalie endured.
Collectively the above referenced friends and family as well as several unnamed friends have formed our St. Jude Marathon Team Natalie & have been raising money for the past couple months. We have a Team page where you can sign in and make donations as well as provide support & encouragement throughout our training. In just the past couple days we surpassed or original goal to raise $10,000. An e-mail update from St. Jude indicated that puts us at roughly the 75th ranked fundraising team. I am personally setting our updated goal at $20,000 which should get us well into the top 50 and would be a HUGE accomplishment in our first year.
Please click on this link and consider making a donation to Team Natalie as we support the efforts of the wonderful medical professionals at St. Jude in trying to find cures and better treatment for children like Natalie.
From here you can pick which of the many Team Natalie members participating in the St. Jude Marathon that you want to support. Without St. Jude our journey would have been over at diagnosis and we never would have had the hope that carried us through our 8+ month journey with Natalie. 8 months isn't nearly long enough and it is only through supporting St. Jude and other great organizations that are dedicated to the cause of finding cures and saving children's lives that we can truly make a difference. Thank you for your consideration.
In addition to these specific fundraising efforts we are working on several other ways to help raise awareness & funding to make a difference in the battle against pediatric brain cancer. That may include forming our own foundation, lobbying congress, bringing together the many amazing & passionate contacts we already have. For now I want to share several videos that we think say so much about this battle. Please take a few minutes to watch each when you have the time.
Thank you, thank you, thank you for continuing to be a part of our journey. Please remember & honor Natalie by being a part of our fight to make a difference.
With much love and NO regrets!
September 26th, 2013- Pediatric Brian cancer Awareness Day!
Written Sep 26, 2013 10:50pm by Ashley & Steve FleischakerDear Natty Nat- Big Fluff!
Today a senator from Nebraska asked the president & US senate to declare today as Pediatric Brian cancer Awareness day! As I am typing you a letter I've realized that I am angry and sad that you and many more kiddo's are considered a number and due to the fact that pediatric numbers & statistics are smaller in the world of cancer you were not granted the same opportunity that many adults are given in their battle with cancer. Children are NOT numbers. Each one of you has a face and story that needs to told. I hope to tell your story and share your beautiful smile with as many people as will listen.
September is Childhood cancer Awareness month and I think about how that looks to me today compared to a couple of years ago. It's night and day and I know it's because of our journey with you that has dramatically impacted my out look. I think about how I've tried to tackle bringing awareness to this month and I feel like I have NOT carried my weight. It's easy to post on FB and share the statistics and different organizations that are trying to make a small dent in the great cause to raise awareness and funding and grants towards research. Daddy and I talk about how frustrating it is to us that DIPG has had no progress and the survival rate is 0%. It is so frustrating to know that the cause is unknown. I personally have a hard time processing that because I have an analytical mind. Some days trying to understand this disease is so overwhelming and makes one feel defeated. I can promise you that we will always tell your story and ask that our friends and family share with others in ways that they find the opportunity.
You touched many of our lives in different ways and I am in awe. Uncle Taylor is running the full marathon for St. Jude's. Our sweet friends, Sue Elliott and Andrea Rowe are running the half marathon and raising funds. We have three relay teams participating and raising funds too. I know that we will have lots of local support at the St. Jude -Give Thanks Walk on Saturday, November 23rd here in Kansas City.
Erin from RiKC has been so kind to connect us with Giving Solo. They have an event this weekend that will benefit RiKC Summer Art Therapy program. It's a silent auction and viewing of the art from this past summer participants. A board was created in your honor with your story.
Mrs. McCarty is selling Pickwick candles and donating the proceeds to Natalie Fleischaker Memorial Fund this month too.
Nat please know that we miss you so very much! I wake up each morning knowing that I will face another day without you physically present in our lives. I have two goals each morning and that is that I get up and get dressed and that I am present for daddy, Jack & Emily. Some days I do a better job than others. Each night I go to bed knowing that I survived that day without you but so thankful for that day.
It brings a smile to my face to think back to a year ago and recall our days at St. Jude or weekends at The Shepards- good memories! The Voice started on Monday and we all watched. Uncle Taylor and I texted each other on our opinions and thoughts. The first couple of weeks are my favorite. Just think last fall we introduced Uncle Taylor, Granny Lu & Poppa to The Voice. You would be amused at CeeLo and his tatoo's- I just laugh to myself thinking what you would say!
I've gone to Starbucks a couple days this month and thought of you each time. Most days they don't have the Birthday Cake Pops (I always look for you) but my favorite pumpkin muffins are back in season.
I'm helping Mrs. Edwards with Running Club at school. I know that is something you looked forward to last year but we were never able to participate. Jack & Emily have really enjoyed it and working towards building their endurance for the St. Jude Family Fun Run/Walk. The Running club's first event was the Dot-To-Dot run last Saturday. It's a nationwide event that supports pediatric brian cancer. You would have been so honored by their participation. Nathan Munro, Megan & Canon Edward, Samantha Steigerwald, Mikey Dowsett all placed within their age group (I hope I didn't leave anyone out). Mommy needs to get her running shoes out again and start working on my leg of our relay team.
When I think back to a year ago I am thankful for so much. We are blessed to live in a wonderful neighborhood surrounded by many wonderful friends. Our school community is amazing. Our family (grandparents, uncles, aunts and cousins) have been amazing and I don't think we could have started our journey without their love and support. Your friends and their sweet smiles and words of encouragement are priceless. I love to see them when I'm at school or around the neighborhood. I know they miss you so much. I am so thankful for you and the blessings that you brought to me and our family.
Last night, Jack and I were laying in bed and he wanted to sing a song to his stuffed animals and Hedgie the hedgehog. Our first song was Twinkle Twinkle Little Star and our last song was 'I'm Big Fluff'! He brought a smile to my face when I couldn't even speak much less sing.
Emily wears a necklace or bracelet of yours most everyday. We talk about you often and you are never far from our thoughts. It doesn't make the hole in our hearts any smaller but it brings us comfort to know you are always with us even though we can not see you.
A year ago today we were at St. Jude's starting our weekly routine or radiation, physical & occupational therapy, labs, clinic visits and school. We resided at Ronald McDonald House and we made many wonderful friends. Our common bond was that we each had HOPE for a cure and a future. I am so thankful St. Jude and our team of doctors and nurses that provided me a chance to be your mom and focus on you and living our lives for that day. I didn't carry the burden of paying for medical bills and being denied treatment due lack of insurance. We met or discovered 5 other families that had the dreaded disease of DIPG. It breaks my heart to know that today only one of them is still with us on earth that 4 precious kids (LewKas-4, Natalie-8, Kaitlin-5 & Carlin-12) have earned their wings since March of 2013.
Today, I saw a beautiful Monarch butterfly in the Butterfly Garden at school- I knew that was my sign that you were with us! It brings me comfort tonight as I try to understand DIPG and the lack of progress and funding for research.
I love you to the moon and back!
Miss you more than one will ever know.
P.S. Thank you for letting me share my letter. Please stay tuned for upcoming events and fundraisers for St. Jude and Natalie's Memorial fund. We are designing a T-Shirt for the St. Jude Give Thanks Walk and Marathon so stay tune for details.
Written Aug 27, 2013 10:07am by Ashley & Steve FleischakerLast week marked day #366 since the words Diffuse Intrinsic Pontine Glioma (DIPG) became part of our vocabulary. It was the first of what I know are going to be many one year anniversaries in our journey. A day- 24 hours- can seem so long at times and yet as I read the Caring Bridge posts of a fellow DIPG family from St. Jude whose journey is sadly progressing I can't help thinking about how short a day is. Each unit of time- a day, an hour, a minute- the all are remarkably short especially when you have a terminally ill loved one. Selfishly I feel like the days are even shorter for those of us in the childhood cancer world but reality is that it's the same for loved ones of adult cancer patients, Alzheimer's, ALS..... It can all be very conflicting- as the days get harder you just long for your loved one's comfort, almost willing the days to get shorter yet you'll do just about anything for that hour or 5 minutes of quality time when they are awake, feeling good (if that's possible) and happy. I find myself amazed by how vivid the memories can be. For a 40-something who regularly can't remember in the amount of time it takes to type www.google.com what he was going to google, I can remarkably return 366 days & tell you exactly what we were doing. I really should write more often, everyone tells me so, and it would make it much easier get everything I want to say on this screen. The problem is finding the time- I started this entry more than a week ago but between work, the kids school, fall baseball & soccer, remodeling a bathroom, training for the St. Jude Marathon relay, etc, etc. it sounds like I'm complaining but that's definitely not the case, it's called life and I CHERISH it! Every minute, second, hour in this earthly life is a blessing and yet each one that passes is a step closer to us being reunited. And as badly as I want to see you, to hold you, kiss your forehead and tell you I love you, I know my place is here now & we will be together again some day when the time is right. For now I'll settle for the amazing memories (as hard as that can be at times). I visit you're beautiful garden resting place a couple times a week and we talk about what's been going on- our family's activities, what your friends are up to, back to school, Meg..... It's wonderful to share with you & yet I sometimes ask whether it's necessary as I know you are always watching over us & can no doubt see what we're doing. Things like my marathon relay training, our bathroom remodel project and Marvel the itty bitty new puppy sister to Montana next door probably seem trivial but that's life and despite the fact there are days it doesn't seem like it can life's going to keep going on and I'd rather keep you a part of it like you're still here.
Mommy and I have said since the beginning of this journey that our life's work is going to include an unwavering commitment to raise awareness about & funding for research to find a cure and improve treatment methods for DIPG and the numerous other childhood cancers that take our most precious people every year. We've done quite a bit of research and continue to interact with other parents & families that have been affected by DIPG. There are tons of personal stories, families that have started foundations in memory of their loved ones and they are all doing their little part. We've learned it is hard to make a difference, to truly move the needle because other well intentioned organizations are telling a part of the childhood cancer story that looks really positive- a survival rate as high as 90%. But that really is only part of the story as the researchers & doctors have made amazing strides in treating certain common forms of leukemia and we are very thankful for all the children & families who make up that 90%. But unfortunately some people including our government leaders hear that 90% & think "that's really good, we're winning the battle". They never here the other statistics like the 0% survival rate for you and the 200+ children diagnosed w/ DIPG each year.
So we're working on telling the rest of the story to as many people as we can and to leverage our numerous resources to organize and unite the RIGHT people to help us change those statistics. We're participating in events, raising money, talking to friends & family with connections in the healthcare provider & research arenas and someday soon we'll be telling a different story.
It's September now and it's been designated Childhood Cancer Awareness Month. That's a positive start when people recognize this disease, the number 1 killer of children, as important enough to designate a month to focus on it. We focus on it part of every day!
I don't write often enough, I miss it and will be doing more of it. Finding the time can be challenging with all the above going on. But it's important in our grieving & healing and it's an even more valuable resource in the battle on childhood cancer. In upcoming journal entries we'll provide details about Team Natalie's fundraising & participation in the St. Jude Give Thanks Walk and the Memphis Marathon races. We'll provide details about other events in the works that will specifically be in your memory. We'll provide resources to our many contacts and the thousands of people who follow your story, arming them with information that can help in this fight. There is power in numbers, the books of Solomon in the bible talk about how 2 are better than 1. The more people we can get involved the greater impact we can have.
Something happened this week, several people who care about you & care about us reached out to share that they have been thinking about all of us. Many of them we hadn't heard from in 6-8 weeks and that's okay but it felt amazing to receive those random check ins and to know that the many members of Team Natalie are still here & as strong as ever.
In closing, please pray for our friends the Davis family who are celebrating the same anniversaries this time of year and who's precious daughter is still here fighting the battle.
Sorry if I've rambled, just so many things to say and they never go away.