NoogieFest

Noogie Fest

Written by Kristen

This past Saturday we took ViviAnne to Gilda’s Club Fall Festival, Noogie Fest. There were tons of activities and an animal show for the kids. It was a wonderful opportunity for ViviAnne to play with other Cancer warriors and survivors and for us parents to get to talk with one another about fears, questions, hear positive stories and just have a great cancer family day!

ViviAnne had a blast! She wanted so badly to jump in the big blow up bouncers outside, and did muster the courage when there were not big kids in there and Daddy would sit in the contraption and hold her hands for her to bounce. She would giggle and squeal. (both with fear and delight) She enjoyed the mask making and made some green slime and even had her caricature made! There was also a safari animal show with snakes and frogs and birds. She sat there next to one of the sweetest girls ever, one of Deborah’s triplets, and watched as this crazy man pulled one animal after another from bags. Every time he would ask for a volunteer little hands would shoot up around the room and there our little ViviAnne sat, wanting to be brave and a big kid and you would see her look around at all the kids with their hands waving excitedly in the air and her little arm would creep up only to hold her hand right next to her head. As to say, “yeah I’m big and not scared” but really she was and I am so glad that man didn’t get any quirky ideas and call on her because the outcome would have been bad. Thankfully he didn’t and ViviAnne sat there and watched all the other “brave” volunteers touch the snakes and birds and even a skunk! It was really a great thing for her to get to do.

I find myself constantly fighting the battle between treating her “normal” and treating her like she is sick. It is so hard to tell sometimes what is real and actual stomach or knee complaints and what is repeating previous experiences. She relives her traumas a lot!! So this weekend to see her get to play and do normal kid things was great. I was aloud to not have that battle within myself and let her be “normal” all the while talking about how hard this is with the other parents. I just hope over the course of the next two years that I never let her see in my eyes that she isn’t normal, because she is only with a little extra crappy stuff. I never want her to see my fear of all of this, not until I have a better handle on it myself because right now it is an uncontrolled fear one that could scare a grown up if I unleashed it so it would frighten the heeby jeebiez out of her!

We met other parents whose children are either out of treatment and/ or in the same place of treatment as us. We exchanged numbers and emails in hopes of being able to meet up again and vent and/or cry about this horror we now live. Parents who get it! Mom’s and Dad’s who like any Mom and Dad are trying to do the best they can for their child only we all feel as though the hand we’ve been dealt now has higher stakes than before, higher stakes with worse odds. So I find myself almost being clingy to these Moms when I get the chance to see one, just so I know I’m not crazy or over reacting. Which I’m finding out I’m not but a little reassurance is always nice!

ViviAnne is continuing along nicely in treatment. Her counts have maintained pretty well. Her platelets are a tad high but not too high to do anything about. She still carries around a kidney stone but nothing too bad, and she has a random vomit here and there but nothing to get worked up over. At least that is how I feel as though I have to look at it. She truly is amazing how she takes it all in stride and just moves on. We’ve heard a lot of stories of how awesome Cancer kids turn out to be as adults. The compassion and empathy they have for people is amazing! These are traits we were trying to instill in our children pre-cancer SO hopefully I too will have a story like that for ViviAnne. Hopefully I will get to be one of the veteran Mom’s whose cancer survivor becomes a doctor or nurse or social worker or minister. Someone who gives back to this world!! These are the things I try and tell myself so that I do not dwell on her prognosis and the “what ifs” and the horror of all that could go wrong and/or IS going wrong. We try to stay positive. Some days we are more successful than others. And then there are some days when it is minute by minute. So if you talk to me and I’m up then I’m up. And if you call and I don’t call back, well it is because I’m down and I can’t muster the words or the energy. So everyone out there who gets annoyed with my voice mail, please know I am thankful for your calls I just can’t seem to get the energy to talk sometimes. It isn’t personal; it is just where I am right now.

Information

Written by Kristen

Please take a moment to read this article from Cure magazine if you have a chance.

http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/142

...and look at these statistics:

· Childhood cancers are the #1 disease killer of children — more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.

· One in every 330 children will develop cancer before the age of 19.

· The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.

· Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.

· One out of every five children diagnosed with cancer dies.

· Common cancer symptoms in children — fever, swollen glands, anemia, bruises and infection — are often suspected to be, and at the early stages are treated as, other childhood illnesses.

· Three out of every five children diagnosed with cancer suffer from long-term or late onset side effects.

· Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.

· Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).

· Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.

· The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).

· Nationally, childhood cancer is 20 times more prevalent than pediatric AIDS yet pediatric AIDS receives four times the funding that childhood cancer receives.

· On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.

· On the average, one in every four elementary schools has a child with cancer.

· On the average, every high school in America has two students who are a current or former cancer patient.

· In the U.S., about 46 children and adolescents are diagnosed with cancer every single school day. That's about the equivalent of two entire classrooms.

· While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.

· Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive.

· Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.

** This is copied from a fellow cancer warriors Caring Bridge page. now you all can see what keeps us parents awake at night! Thanks, Deborah for the info.

Kosair Video featuring ViviAnne

Written by Daddy

Over a year ago, I filled in for our business/marketing manager at a GLI event; not 100% sure what I was getting into.  The event was a nice lunch and quickly turned into one of those 5 minute marketing things.  Like speed dating for marketers.  You trade two minute commercials and contact information with the person across from you.  Someone rings a bell and they are gone and another person sits down and you go again.  If I had known this, I would not have gone.  Anyway, the bell rang and a vibrant lady sat down who seemed to have this down pat.  She did her thing, I did mine, the bell rang, we shook hands and she went on her way. 

Fast forward to mid July this year and we meet again in the corridor of 7West.  She has a little boy who is now 8 and was diagnosed with ALL about a week or so prior to ViviAnne.  We have since ran into each other about a dozens times in treatment, at the hospital or at events like Light the Night.  We try to keep up with each other’s progress and make sure each others little ones are still doing okay.  Her son’s name is Noah and he just got released recently from a week long stay in the hospital.  Please keep Noah and his family in your thoughts and prayers.  They had a rough week. 

Noah’s mom sent me a link to this video recently.  It brought back a lot of bad feelings and emotions I had a few months ago.  But it also brought back one of the emotional moments Kristen and I had the first night we spent at 7West.  We agreed that we would never say this isn’t fair and that she doesn’t deserve this.  Because no child deserves this yet there were dozens asleep on that 7West that night and tonight who were dealt this hand.  I don’t know how well we have kept with that but this video reminded me of our attempt.  After much discussion between Kristen and I and a couple of weeks of letting our original emotions surrounding this video subside we want to share it with you all. 

http://norton.cachefly.net/JFK_CHF/support_chf.html

D-Day

Written by Daddy

Sunday October 12th 2008; Kristen was sick and needed a well deserved day of rest. I knew my mission. I had to get the kids fed and dressed and out the door, not to mention the same task for Brad, Stacey and Andy. The latter was more of a daunting and time consuming task for me. I kid.

Reconnaissance Mission One was to observe miniature aircraft activity over Tom Sawyer Park. There is a little airstrip (by little I mean a driveway) off of Hurstbourne Lane where old Navy Has-beens and remote control wanna-be pilots gather to play with their middle aged toys. These guys took this very serious; they each had clearly invested a lot of time and money in this pastime. When we arrived half a dozen were already on the ground going through their pre-flight inspections. And then one by one they’d taxi on to the tarmac and take flight. Cooper about locked up and Andy wet himself a little in all the excitement. ViviAnne of course only cared about the pink plane. It takes a big man to show up in this arena with a pink plane, but even a bigger man to laugh at him when it crashes into the tree line. Unfortunately, Vivianne’s favorite plane was last seen being loaded into the back of an SUV in several pieces. It was no secret that this little excursion was focused more on the three adult men in our squadron. But the kids loved it as well. They were perfect angels patiently waiting the next flight.

Our next mission was clear, so we loaded up the team and headed to HobbytownUSA. The rules were clear and even more clearly ignored. NO TOUCHING! Upon entering the door Cooper somehow managed to run in three directions muttering, “I Get!, I Get!, I Get!” ViviAnne fixated on a pair of toy binoculars or “Schelesopes”. We managed to escape significant collateral damage and left the store. Andy bought a small Styrofoam RC Plane that boasts a wing span of about 5 inches. ViviAnne dubbed this piece of aeronautic engineering “Andy’s Cute Plane”. Daddy prefers to go down in flames and splurged on a more man sized aircraft. The kids didn’t seem to mind that these where crackerjack trinkets compared to what we had witnessed earlier.

Back at Gramma and PawPaw’s, “Andy’s Cute Plane” saw about 60 seconds of airtime before a slight breeze hurled it into the top of a tree; the very top. Under the careful supervision and direction of ViviAnne, a spool of fishing line, a lead weight, 60 feet of rope and 1.5 hours, later we managed to dislodge the flying BigMac container from the tree with minimal carnage.
“The Man Plane” took a painstaking 3 hours to charge. After a 3 minute preflight video on CDROM, ViviAnne, Andy and I were experts. Stacey gave ViviAnne another controller so she could pretend to be at the stick. The maiden voyage included 10 feet of ascent, 20 yards of travel and a mid-air collision with the nearest tree branch. After carefully surveying the damaged wing and loss of landing gear, the executive decision was made to push our luck and return to the air. The next flight was a little more successful with a fly-by over the house before we lost sight and contact. Our new found hobby had quickly become a rogue unmanned missile and no cow or horse in a quarter mile range was safe.

Andy and I took to the great wild of Oldham County to recover the wreckage. We climbed barbed wire fences and dredged through the thorns of undergrowth of adjacent properties to rescue our fallen comrade. With the sun and our hope of “not leaving a man behind” setting we started to head back toward Gramma’s feeling defeated. We’d all but given up when we heard the whine of a 9-volt engine crying out for help. We actually had to go back, get the car and drive to where heard the sound. With our pride and a large remote control in our hands we knocked on a farm house door. Luckily no one answered and we scampered around the house to find our plane in one piece and hurried back to headquarters.

My little fighter pilots were exhausted by this point but glad to see that we had survived to fly another day. We returned home and debriefed Mommy on our mission accomplished. The perfect Daddy Day; no work, no chemo, no boo-boos, and no structure, we literally went were ever the wind took us. It was a great day that I will never forget.

PawPaw's Post

Written by PawPaw (Brent's Dad)

As the father of a handicapped child I always wondered “why us” , why not let this child have a normal life, why did God do this. Kim (grandma) is a saint, she has taken on the situation for 30 years with patience and love where I was less understanding of the situation and question God’s reasons for this, I was mad at the world instead of coping with the situation like Kim. When we were told of this situation of our first child by the doctors it was like someone hitting you in the chest with a sledge hammer then you pick yourself up and try and deal with it the best you can, not knowing for sure what is the best way, but you try and do what you think is right. It’s a lonely feeling sometimes like your on your own and only the support of your family and friends help you get through it.

So here we are, 30 years later, life is good, your kids have grown up, graduated college, got married, bought houses, had children, etc. Life is good. Then you find out your little granddaughter has the dreaded word “cancer”. Here comes that sledge hammer again, right in the chest, life seems numb, it’s hard to work, it’s hard to sleep, sometimes it hard to not shed tears. And then it comes to my mind again “why us”, why make this poor little thing go through this, why do this to these parents. Maybe some day if I am lucky me and God will be able to sit down and have this discussion.

When Kim told me of the Leukemia walk we did last Saturday I did not think it was a big deal, we are going to go down to the river front, get in line with a few people and take a one mile walk. What I experienced was totally different than expected. I saw a thousand, maybe two thousand or so people, carrying red and white balloons with lights inside them. People were wearing different kinds of personalized t-shirts to support their sick friends or family member, or the heart breaking t-shirts that read “in memory of.” But then there were the encouraging blue and white t-shirts that said “survivor."To be able to talk to these people and share their experiences and concern for your loved one, it was awesome.

We will still have the sleepless nights, the challenge to concentrate at work not on ViviAnne’s illness, the worrying about the parents and kids. But I see the goodness and support of family and friends, friends of friends, even strangers, the determination of the doctors at Kosair, the determination of Brent and Kristen and the support of the Leukemia foundation. I see all this and I say to myself, we will succeed in this quest and one day we will be with VivivAnne down on the river front, walking that mile with her blue and white t-shirt that says “SURVIVOR”.

Light the Night

Written by Mommy

This past Saturday we went to the Riverfront to take part in the Leukemia Lymphoma Society’s Light the Night Walk. It was only a one mile walk where supporters carried red balloons with lights and survivors/warriors carried white balloons. We went down early with my mom and brother to hang out and enjoy the evening of fun. ViviAnne and Cooper both enjoyed bouncing and sliding in the blow up things and ViviAnne had a butterfly painted onto her cheek, pink of course, and loved looking at all the kids running around and playing. She even tried to join in with some older kids running in the yard but they had pooped out by the time she mustered up the courage to run too. She was so happy and excited by all of the people and music and even the ducks swimming down the Ohio River were fun for her and Cooper! They were both a joy to watch and it was a truly touching night.


Nearly $400,000+ was raised that evening for cancer patients of all ages and we signed a petition to get Congress to support research in the Leukemia and Lymphoma areas. (They currently only give money to 4 cancer research trials and they are not in the blood and bone areas.) It was moving to see all the other survivors and warriors and all the people out to support a disease that is so devastating.


ViviAnne of course did not understand why we were walking, she just enjoyed the walk and the balloons and our matching t-shirts that have her picture on the back. She thought that was the coolest! On Monday I put a plain grey t-shirt on Cooper and she said “hey, where’s me?” like he can only wear t-shirts with her face on them. She was dishing out the hugs and kisses to all of our supporters and talking up a storm, she loves to be in the spotlight! Thanks to everyone who came out to support her and gave up just a little bit of your Saturday night for our baby, I was so happy and felt so loved to see you all there!!



On Sunday her cousins Abigail and Madison came over to play. ViviAnne squealed and bossed people around and played very hard the entire time they were here. She just thinks she is such a big girl that a 6 year must want to play with her and do it her way because she has the BEST ideas! (At least that is how ViviAnne would describe the situation.) ViviAnne LOVES babies and her entire life has never thought she was one. Even when she was only 15 months old and BABY was a favorite word she thought she was a big girl and they were the babies! It is kinda funny to watch her interact with girls about 5-6 years old because that is about what age she thinks she is. She played with Abigail as if she is on her level and then Sunday night she crashed.

She slept 13 hours that night and woke up sick on Monday morning. The vomiting was controlled by the Zofran but even with a pukey Monday morning the weekend and the two weeks leading up to this one have been GREAT!!! She was playing well and smiling often. I hope today isn’t her descent down the other side of the mountain but just a fluke!