For anyone who hasn't heard of it CureSearch is the organization behind the network of 200 COG hospitals.
It is the funding base behind all the major advances in pediatric cancer in the past 40 years. It is the source of shared information and protocols for all pediatric cancer treatment. They are committed to do everything they can to drive research forward for better, safer treatments and one day... cures. 95 cents from every dollar raised goes directly to research funding.
Today TEAM JULIA walked with 33 other teams to make a difference. I am thrilled to say our team raised $2050!!!! THANK YOU! THANK YOU! THANK YOU! The entire walk brought in over $65,000! The donations are still being counted. We were blessed with a beautiful day. The walk was held at the American Tobacco Company, an innovative new downtown property...
The kids had a ball with the mascots and grabbing a quick snack with their friends and cousins...
Christy (Eve's mom) was this year's event chair. She did a wonderful job with the inaugural event. Her passionate and powerful words touched everyone in the crowd.
Before the kids took the stage we all paused to remember our angels- the courageous cancer kids who earned their angel wings. It was an emotional moment as all their friends and family released balloons for their children as the music played quietly. We will never forget why this battle must rage on. We will never forget their brave battles and precious spirits. Their strength and suffering are an inspiration to us all.
Then all the survivors and current fighters were called up to the stage. Each one had a chance to say their name and age and receive a medal for their battle.
Then the kids hold up the banner for this years teams. The names in green are the SURVIVORS, the purple are the current WARRIORS, and the blue are our precious ANGELS...
Then it was time to walk...
Every team had a sign along the route to thank all the walk participants...
Julia was excited to walk with her friends...
TEAM JULIA 2010: Us, James and Martha, Laurel, Izzy, and Merry Ann,
Debby, Ginny, Giselle, Uncle David, Taylor, and Jordan...
It was a wonderful event for so many reasons. Thank you to everyone who supported us, encouraged us, shared our cause, and walked with us. Together we are making a difference. Any change in the current pediatric cancer protocols will come from the COG and the funds raised by CureSearch. You have been a part of something truly powerful and amazing.
And we are thrilled to announce that next year there will be a Triad CureSearch Walk!! I will keep you posted of all the details :)
We have been blessed with an obviously God-given peace in these months waiting for Julia's GI surgery. The intense anticipation and urgency we could not shake a few months ago, has been replaced. It was definitely not something we did. The situation has not changed. The need has not changed. The surgery has not changed. And the damage we are causing in the meantime has not changed. I have no other explanation than God.
Last week though it hit me again like a hammer.
I was laying Julia down on the floor to begin another round of her laxative regimen. As she looked up at me, she said with tears in her eyes, "I don't want to have more surgery. Not even later. I promise not to cry anymore when we do these medicines, just please no surgery." My heart shattered again. I hate cancer and what it has done to my child's body and life. I hate that I have to talk her into being sedated for the 14th time like it's something normal.
I hate cancer because of the role it pushes moms to fill. In an instant we go from the loving, nurturing, protector to the mom that has to repeatedly lead our child to the fire and force them into the pain. Every cancer family has their own specifics whether it's port access, chemo drugs, sedation meds, sedated scans, bone marrow biopsies, home injections, spinal chemo, painful suppository laxatives and enemas, finger pricks, IVs, chest tubes, NG tubes, and the hellish list goes on.
We have to calmly deliver our child to the pain and push them into it... over and over and over again. Sometimes alone in the privacy of our homes, sometimes in suffocatingly small exam rooms, sometimes on display for all the world to see. Sometimes we are the ones inflicting the pain. Sometimes we are restraining them with all our might while trying to talk with calm, loving words. The irony of the whole scenario is probably most disturbing to the child. And other times we stand helpless in the corner while our hearts lay open on the table with our child. And it never gets easier.
Never.
It goes against everything our souls tell us as a mother. Yes, there are therapists to help and techniques to use, but it doesn't stop the pain. The screaming, begging, pleading, tears, and anguish still happen. You cannot just brush it off when you are holding down your child as they scream at the top of their lungs, "Mommy why are you letting them hurt me?! Please make them stop!!" Knowledge and coping cannot erase that. The darts in the battle are still thrown and pierce a mother's heart in the deepest places. The therapy removes the darts and puts on a bandaid, but the holes remain.
Julia dreads her daily laxatives and suppositories because of the hour of pain she knows will follow each round. And now she has a raging diaper rash that is making the process excruciating. We are using an array of creams, blocks, anti-yeast drugs, etc. and things improve only to flare up at the next diaper change. It is just the last straw seeing her in such pain. The scream is just anguish. Even basic water on her skin is too much.
It just makes me so angry.
And to add insult to injury, you have to pay for all of this suffering. We received the statements from Julia's week-long January hospitalization- "the week of torture". We paid 5 figures for that event. The next time I see that many numbers in a row it better be a family vacation to someplace tropical! It is crazy that a 4 year old should meet their deductible in the first 6 weeks of the new year and that the maxed out FSA funds will be gone before spring. But that is the world of cancer and we hate it.
I am angry at the relapses. For all the families we love right now who have been dealt the only blow worse than the initial diagnosis. "Your child has relapsed." And for some the confusion continues. The world of medicine is far from black and white, as much as it strives to be. The world of pediatric cancer is often the grayest of them all. Cancer cells play by their own rules. How many times should you subject your child to labs, spinal taps, CT scans, bone marrow aspiration, lung biopsies, and chest tubes only to be told there is no real answer or protocol? Even the most high tech scans do not give definitive answers, just guesses, so you go in for a biopsy, but the pathology is unclear. The doctors are not sure what they are seeing or it shows some evidence there may, possibly be cancer, but hopefully not. "Would you like to go home to wait and see or sign up for 6 more months of poison and torture?" Are these really options? Sadly, this is the reality for so many.
I am so angry at cancer right now.
The only thing that seems to ease the pain right now is action. Thank you so much for everyone who has donated to TEAM JULIA for the CureSearch walk!! Only 3 more days until walk day :) I cannot believe we have crossed the $1000 mark! (And the walk total is about to cross the $50,000 mark!! And 95% of that money goes directly to pediatric cancer research! Fabulous!) You guys are awesome! Thank you for making a difference. And thank you to all those who are coming to stand beside us in support. It will be an emotional day and the love of our family and friends is priceless.
This time with Julia who apparently inherited her brother's fascination in crash landings. As they sat across the aisle discussing the different scenarios, I was secretly hoping their conversation wasn't going to get us kicked off the plane. There's a very fine and fuzzy line these days and kids are not exempt. As they discussed fires, oxygen, emergency lighting, and life jackets- Julia yelled joyfully...
"Hey Carter, look at this! We don't have to worry about opening the door ourselves because this nice man in picture 4 and 5 is going to take it off and throw it out of the plane for us before we jump out!"
Ah, such fun thoughts before takeoff.
We were just happy to be on our plane. When we returned the rental car I asked where the SmarteCarts were. The attendant said they removed them because people weren't putting them away. So how is one supposed to get a suitcase, 2 car seats, 3 bags, and 2 kids to the other side of the property where the terminal is located? No one knows the answer to that. I was overjoyed when one of the workers volunteered to drive us over and drop us off. Problem solved. Thank you sweet woman!
Well, until we got out of the car and the lovely tether hooks that went on so easily onto the hooks in the Toyota Camry will not come off. The tether bars are flat and too wide. The Hertz lady and I tried for 20 min and then grabbed some friendly businessmen to help. Another 20 min, a Skycap worker, and a toolbox later we finally had our car seats back. Next time I will look closely before I clip, not all tethers are created equal.
We dragged our wares into the airport to check in. Unfortunately in this economy, the gate agents have been replaced by self-check in kiosks, which is great- when they are working. None of them were. And the line of 35 passengers all needed to be on planes in the next 30 min. Thanks to some very helpful baggage handlers we did make it. And all the airlines are still allowing checked car seats as free luggage, but the catch here was you had to take them to the other side of the terminal yourself.
We finally made it to security. Taking young kids through security yourself is truly an aerobic activity. It takes us 9 gray bins to get all our stuff taken apart. And with the kids getting older, we're traveling light! Then the harassment begins- ensuring the water cups are completely empty, grilling us over every prescription medicine, body searching the kids, critiquing the miralax powder, disassembling the leapsters, and the list goes on.
But the good news? TSA must have heard they are getting a bad rap by the preschool set and they have a solution. What do nurses do after they subject your child to pain? Why given them a sticker of course. The love language of the little people...
There, all better now. Have a great flight! Come back and see us soon!
THON is a dance marathon fundraiser held annually at Penn State University in PA. It was started in 1973 and in 1977 it became exclusively committed to helping pediatric cancer patients. THON decided to focus on one recipient- The Four Diamonds Fund in Hershey, PA. Since the beginning, they have raised almost $80 million dollars!! These funds support the families of children in treatment paying for everything not covered by insurance and then some, fund hospital additions, support the therapy programs for patients, and most recently... spending millions to fully fund new research grants.
THON is the largest student-run philanthropic organization put on annually by 3,000 student organizers who handle everything from finances, to entertainment, to merchandise, to technology, to supply and logistics, to caring for the cancer families, to sweeping the floors, cleaning the bathrooms, and taking out the trash. They do it ALL themselves. There are no adults in charge. This is this is student run from the top down. We came in contact with hundreds of them doing their assigned tasks and I must say I was impressed every time. Their compassion and commitment was inspiring whether giving directions, selling a snack, or cleaning a toilet.
The essence of THON is the weekend long dance marathon. The dancers are on their feet for 46 consecutive hours to honor the 46 children newly diagnosed with cancer every single day. They are supported by a team of volunteers who encourage, feed, massage, and support them. They are on their feet the entire weekend. They eat standing up. They wash their hair standing up. They even pee standing up! It is a grueling test of physical and mental endurance driven by the compassion and admiration these students have for the Hershey Heroes battling cancer.
We were invited to attend THON this year by our friend, Matt, who is a senior at PSU. He was chosen from thousands to be one of the select THON dancers on the floor of the arena. We were so proud of his efforts and were excited to find out we would be able to make the trip. Friday morning we were up before the sun to board a plane- Happy Valley or bust :)
The kids were a hoot on the plane. They have been on over 50 planes in their lifetime, but the older they get the more they want to understand about flying. Two summers ago we were flying to Texas for a family wedding. Carter announced he was not going because he refused to fly any higher than he could jump. We convinced him to give it another shot and were thankfully successful.
The fascination this trip? Emergency procedures. Fun times. When the flight attendant said, "Please remove the safety placard from the seatback in front of you and give me your undivided attention for the next 3 minutes." Carter was appalled that his fellow fliers did not comply. He was hanging on every word...
He was most concerned about a water landing. Now let me remind you, the first leg of the trip is a 20 minute jaunt down I-85 to Charlotte. If we see water, we are in more trouble than we thought. He proceeded to get out of his seat to remove his seat cushion to see how it becomes a flotation device! Always prepared :)
Meanwhile the presentation has moved on to the oxygen mask segment. Julia begins to yell, "I don't want oxygen!! No oxygen!!" Apparently we have a little 'surgical PTSD'. I kept telling her she wasn't getting oxygen. We were in an airplane, not a hospital. It took a little convincing, but she finally believed me.
Hopefully we can fly without making too much of a scene for the rest of the trip. We had a relaxing layover in Charlotte as we enjoyed breakfast in the rocking chairs, under the warm sunshine, listening to the piano music. Much better. We had an easy last leg as we flew into Harrisburg. Carter had the people around us laughing pretty hard as he outlined the escape procedures should we crash into the ice-covered Susquehanna River surrounding the airport. I am happy to say we touched down on the runway as planned.
After getting our luggage, loading our cart, picking up the rental car, and installing the car seats- we were off to State College. It is a scenic drive along the winding river, through the mountains, and into the valley. The kids were wiped from their morning adventures...
By the time we arrived, everyone was refreshed and ready for some lunch. We were blessed with an unusually warm 70 degree day! Unheard of in PA in February. There were flip flops, shorts, and tank tops everywhere you looked. We decided to seize the day and enjoy downtown and the PSU campus.
Look who it is... JOE PATERNO!!
Congrats on the Big 400!!
Then we headed over to the BJC arena for the THON kickoff. The line of students was wrapped around the building! They descended on the place full of excitement and anticipation. Time to get this party started!
One of the first activities is learning this year's line dance. It is a specially written and choreographed dance that commemorates the past year's events as well as the meaning of THON. It is performed every hour to keep the dancers motivated. After a few rounds the kids had learned it, too. Here's a little line dance action for you...
If you want to learn the moves yourself, here's the closeup lesson.
For 46 hours, the BJC is packed to overflowing while everyone dances, cheers, plays, eats, sings, laughs, cries, remembers, dreams, believes, hopes, and STANDS for the little cancer heroes. The families are treated to a weekend of fun and memories as the special guests of THON for the entire event.
We were excited to be there in support of Matt, the dancers, the families, and all the heroes. It was like the craziest, most energetic, most extravagant pep rally you could ever imagine! Every hour they organize different themed activities on the floor for the dancers and families from color wars to water fights to life-size jenga to county fairs to cookie decorating to board games to volleyball and the list goes on. The kids had a great time.
On Saturday morning we had a chance to spend an hour on the floor. It is a huge treat to be able to join the heart of the action. It is a bustle with games, food, toys, people, and fun. Carter and Matt...
Kim and Julia with the Geico Gecko...
(We also had visits from the Phillie Fanatic, the entire cast of Star Wars, the Nittany Lion, and many more!)
Carter loved all the games being played and was right in the middle of the action...
making friends left and right and joining water fights whenever possible...
The fun continued into the stands, too!
Julia liked the Red Cross Bloodhound...
We had lots of yummy local treats, too- Creamery ice cream, philly pretzels, and more. Mmmm :)
We had a wonderful weekend spending time with some of our favorite friends. Mike, Kim, Michael, Meghan, Matt, and Madison- thanks for the memories and the fabulous hospitality! We can't wait to get together again!
We had to fly back Sunday morning and weren't able to attend the last day. It is one of the most moving parts of the weekend as all the Four Diamond families are honored and the angels from the past year are remembered. It is a powerful way to push the dancers through the last few hours of THON. I teared up several times during the weekend just in the time we were there. At several points on Saturday, cancer kids got up to share their own survivor stories. Such powerful testimonies. Their words speak volumes for the battles being represented here.
Every time I looked around at the crowds to take it all in, I was overwhelmed that these thousands of college students all KNOW. They know that 46 kids are diagnosed with cancer everyday. They know that pediatric cancer receives almost no public funding. They know that cancer takes a serious toll on young children and their families. They know that cancer costs money. They know that these kids are true heroes. They know that research funding is our only hope for a cure. They know that the only way research will happen is with money. They know that they can make it differencejust by STANDING up and believing, alongside all their friends. And that is exactly what they did.
In the end though it is worth every moment as the final total is revealed. THON 2011 raised...
for pediatric cancer!!! Yes, that's $9.5 MILLION!!!!!
Congrats PSU! You blew this one out of the water! We love you Penn State!
We had a very happy Valentine's Day last week. The kids were very excited to decorate the house. They love looking back at their crafts from when they were younger and remember.
Every year we excitedly prepare for making Valentines for our friends and family. All the paper, hearts, glitter, stickers, and markers- what's not to smile about. Yet somehow we seem to go downhill fast, every year! I keep thinking it will get easier, but it hasn't happened yet. Maybe next year we'll start in the fall :) In the end they are excited with the results and look forward to handing them out. At least the red will hide the blood, sweat, and tears! Just kidding... mostly.
We had a fun morning planned with some homeschool friends. Kim and I are both past teachers and every so often our classroom tendencies rise to the surface. We had a great morning with our friends enjoying circle time and stories followed by activity centers. Painting heart ornaments...
decorating cookies...
making our own mailboxes...
delivering homemade Valentines...
making candy necklaces and heart mobiles. We finished off the party with a yummy lunch together.
It was such a sweet time. I feel so blessed to spend time surrounded by all these kids. It has been a privilege to watch them grow, many since they were born. Our time together has changed through the years and now involves more questions, conversations, deep thoughts, and growing friendships. I hope to store these memories in my heart for years to come.
After a yummy family dinner at home, it was time for our annual scavenger hunt. The kids look SO forward to this every year. I started doing this when Carter was very young. My parents send a box of surprises and treats every year for the kids. I thought it would be fun to turn them into a game with homemade clues. The kids are able to do it on their own now and love the challenge.
It is so cute to see their excitement!
Happy Valentine's Day to all our friends and family!!!
It is the funding base behind all the major advances in pediatric cancer in the past 40 years. It is the source of shared information and protocols for all pediatric cancer treatment. They are committed to do everything they can to drive research forward for better, safer treatments and one day... cures. 95 cents from every dollar raised goes directly to research funding.
Today TEAM JULIA walked with 33 other teams to make a difference. I am thrilled to say our team raised $2050!!!! THANK YOU! THANK YOU! THANK YOU! The entire walk brought in over $65,000! The donations are still being counted. We were blessed with a beautiful day. The walk was held at the American Tobacco Company, an innovative new downtown property... 
The kids had a ball with the mascots and grabbing a quick snack with their friends and cousins...
A sweet hug from Ms. Wuf...
The face painters were a big hit...
Hanging out with Matt and Eve... 
The boys with Ms. Wuf...
Christy (Eve's mom) was this year's event chair. She did a wonderful job with the inaugural event. Her passionate and powerful words touched everyone in the crowd. 
Before the kids took the stage we all paused to remember our angels- the courageous cancer kids who earned their angel wings. It was an emotional moment as all their friends and family released balloons for their children as the music played quietly. We will never forget why this battle must rage on. We will never forget their brave battles and precious spirits. Their strength and suffering are an inspiration to us all.
Then all the survivors and current fighters were called up to the stage. Each one had a chance to say their name and age and receive a medal for their battle.
Then it was time to walk...
Every team had a sign along the route to thank all the walk participants...
Julia was excited to walk with her friends...
