You are moved, momentarily. You shake your head and offer a quick prayer for Lauren or, more likely, for the blessing of your own kids’ good health. Then you can’t find your keys and soccer practice starts in 15 minutes and you have to stop at the cleaners and your car has no gas, and just like that the story of Lauren Hill retreats to the big warehouse in your head, joining the rest of the jumble. We are so well informed, yet so poorly versed.
You are who Lauren wants to speak with. It is to you she is dedicating the rest of her brief and precious life. Have a minute?
“One January night, I was having a meltdown,” she begins. “I asked God if I could do anything. I didn’t know what He sent me here for. I wanted to know what He sent me here for. Whatever you sent me here for, I’m ready to do.”
Does she have your attention now?
“What keeps me going is remembering why I’m here,” she says.
Lauren Hill is here for all of us. She’s a soul engine, and all she wants to do for the rest of her life is remind us how good we have it, and that we need to make that goodness matter, for everyone. That would include kids with the cancer she has, which is inoperable and incurable and swiftly fatal and receives very little attention.
To that end, she is doing all sorts of interviews, locally and nationally. Her cause has become a phenomenon, its apex occurring Nov. 2 when she plays in her first college basketball game. The game was moved from Nov. 15 at Hiram College to Xavier’s Cintas Center to accommodate a packed house and Lauren’s distilled timeline. The 10,000-seat arena sold out in less than a day.
Well, last Friday I had started a {this moment} post where I meant to post some photos from the race I ran last week and of the boy for whom I ran, but the moments were busy and full and I barely took time to sit at my desk for days.
Then Monday came and along with it, a Facebook post I had expected and feared. There was a moment when I held my breath and wished the words weren’t true. A moment when I realized that all these little intervals of 60 seconds just seem to be slipping away too fast. A moment when I wished I could give some of my remaining moments to someone else. My friend Mathias, who has been fighting cancer for two years still fights on. His family still fights on. His friends pray and we hope and we beg His mercy and His miracles because that is what we have left. There are no more treatment options.
I’m back here now with my cutesy {this moment} draft from last week staring me in the face. The cursor blinking at me, challenging me to write something profound and comforting as the moments tick on and I wipe away tears again wondering how there could possibly be any more left in my red, raw eyes. So, I will remember those moments tonight that led me to run a race I didn’t think I could, didn’t think I would, but knew I should. I will remember them, not to celebrate my accomplishment, because it wasn’t really mine. Because a little boy with a million dollar smile took hold of my heart and my head and pretty much set my feet in motion a week ago. For him and because of him, these moments happened. If not for him, I would have stayed in my bed that morning. I’m pretty darn sure of it.
First, there was that moment back in June when even though I thought I was done with long runs and even though it had been five years since I had run ten miles, I actually signed up to run the Army 10 Miler because there was a spot on a team called Team Mathias. I had no choice because I would move mountains for that smile.
The holidays are quickly approaching and why not buy gifts that give back? Shop with us and a portion of sales from all vendors will go toward Alex’s Army Childhood Cancer Foundation to support children and families batting childhood cancer!
How does 4 tickets (suite level in a box) for the Wizards vs Atlanta Hawks at the Verizon Center on November 25, at 7pm, parking pass included sound???
Come to our Holiday Shop for a Cure event and check out this and other awesome raffle and door prizes that we will be giving away!!!
We are so thankful to the Evergreen Fire Station for allowing us to use their banquet hall for tomorrow’s event. A few announcements regarding the venue, parking, etc:
***The fire station is currently doing a food drive to help stock a local food shelter
in our county, if you can please bring one or two canned goods to donate!
***Parking can be found in the back of the station, we will have Alex’s Army signs to guide you from the parking area to the entrance for our event.
***We need to keep in mind this is an active station and no loitering outside or around the trucks/equipment will be allowed.
Be sure to like our event page on FB to get all the important info and announcements!
Approval of the Lymphoseek system for detecting sentinel lymph nodes has been extended to cover all solid-tumor cancers, its manufacturer said Wednesday.
The FDA is also permitting the radiolabeled tracer system to also now be used with or without lymphoscintigraphy, according to Navidea Biopharmaceuticals.
Previously, Lymphoseek had been approved in conjunction with melanomas, breast cancers, and head and neck tumors.
The product uses a technetium-99 labeled tracer to identify lymph nodes serving areas near primary tumors, allowing oncologists to select for excision and analysis those nodes most likely to harbor emigrating cancer cells. The tracer is called tilmanocept, and it binds to CD206 receptors in lymph nodes.
Navidea said the expanded approval was based on data collected in the company’s melanoma, breast cancer, and head-and-neck cancer trials. “An integrated analysis of data from all three studies showed positive diagnostic performance of Lymphoseek across the solid tumor types studied,” the firm said in announcing the new approval.
The FDA has requested a postmarketing study to be performed in pediatric cancer patients, to be completed by 2018, the firm added.
We are walking (and rolling) AGAIN to raise money for Childhood Cancer Research, this time at the CureSearch Walk this Sunday, Oct. 19th in Fairfax! We’d love you to join our team and walk with us or consider supporting us by sharing our page or donating if you can! Click on the link below for our team page and more info!
It’s pretty much standard practice in cancer research to search for genes that could serve as leads for new tumor-fighting drugs. But Cigall Kadoch, a 29-year-old assistant professor of pediatric oncology at the Dana-Farber Cancer Institute (yes, that means she’s already on the tenure track at Harvard) is following a new lead for anti-cancer medicines: exploring the genes that regulate the molecular structure of DNA itself.
Kadoch will be on stage at the Forbes Under 30 Summit on October 21, as part of a panel on the future of medicine, called Tomorrow’s Medicine Today.
A quick review of basic biochemistry: DNA is a molecular ladder in which a code made of molecules called bases (adenine, thymine, cytosine, and guanine or A, T, G, C) create recipes for all of the proteins that make up every part of the body, as well as instructions for when to make them.
But as with a computer’s hard drive, the code isn’t all that matters. The physical structure that reads the code and translates it for the body matter, too.
This DNA-reading structure, called chromatin, is constantly being modified as a way of determining what bits of DNA code get read. And the chromatin remodeling complex, which makes these modifications, is itself controlled by genes written into the DNA.
Kadoch, as a graduate student at Stanford, found that genes related to a chromatin remodeling complex called BAF, were, when mutated, the cause of a rare pediatric cancer: synovial sarcoma, usually found around major joints. Approximately 800 new cases occur in the U.S. each year.
Now, she has a 12-person team in her Boston lab looking for new drugs targeted at BAF, which might help not only kids with synovial sarcoma but also other patients. Kadoch guesses that 25% of cancers might be caused in part by BAF-related mutations. “It’s an amazing thing going from leading your own efforts to leading with a whole group behind you,” she says.
Dr Andrew Pendleton makes his rounds. The Pediatric Cancer Specialist at Memorial Health says for these kids, its not just about the medicine, but their attitude.
“The most important thing is hope,” explains Dr Andrew Pendleton. “The 4 letter word hope. All the majority of patients will be cured depending on the type of cancer, but there is always reason for hope.”
Hope, and good medicine, is what helps keep a smile on these youngsters faces. No easy task considering what they are going through. But Pendleton says kids actually make better patients than adults.
“I think its easier for me to work with them because they are pure, they didn’t cause it, whatever we do will be beneficial,” said Dr Pendleton.
“Children do not complain about things,” said Dr Pendleton. “They never lived through life and know what normal life is. To them this is normal life, they adjust, they adapt, they thrive.”
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“People ask me all the time how can you do this Doctor?” explains Pendleton. “How can you not do this? The patients, the children didn’t deserve anything they get. They go through life, not just the steps of life, eating breathing, going through the day. They live life, they play when they feel good they smile, they bring life to us, they bring a joy to us.”
Joy, and a cure. That’s what Dr Pendleton and everyone here want to bring to these families.
“Hope. All the reason to hope. No reason not to hope for a better future,” said Pendleton.
Despite the success rate and growing number of children with cancer, the national funding has been cut almost 30% in the past few years.
A pair of gold Nike cleats that were worn by Atlanta Braves closer Craig Kimbrel were sold on eBay to support the nonprofit Curing Kids Cancer organization. Many professional athletes stepped up this year in support of children with cancer and this was Craig’s effort to mark September as National Childhood Cancer Awareness Month.
Craig is the chairman of the charity’s program Players Curing Kids Cancer and the color gold happens to be the symbolic color of childhood cancer. All proceeds from the auction went to cutting-edge kids cancer research.
The Braves closer wore the gold-colored cleats on September 3, 2014 against the Philadelphia Phillies where he picked up his 42 save of the 2014 season and his 181th of his career.
“They raise money for research for pediatric cancer,” Kimbrel said. “September is the month and the color is gold to raise awareness. I decided to put those cleats together and wear them in a game and try to raise awareness.”
“We are going to try to auction the cleats off and try to raise a little bit of money for the charity.”
Well, they did raise some money…the auction ended Wednesday night with the total selling price at $2,275.00
A great cause from a class act guy…thank you Craig for supporting and doing all you can for children with cancer.
Chris fishing two weeks prior to diagnosis; July 2012Chris was born with hemihypertrophy. It is a condition in which one part of the body is larger than the other and is associated with an increased risk for certain cancers. In Chris case, his left leg is longer and bigger than his right leg. At 6 months of age he was sent to an orthopedist and geneticist. The orthopedist followed his leg length discrepancy and the geneticist evaluated him to rule out genetic syndromes and to screen him for Wilms Tumor. When we visited the orthopedist the first time at 6 months, we were sent for a screening ultrasound, this was the first time we heard of Wilms. I remember coming home and crying that day, knowing that my son was at risk for cancer. As time went on, Chris had AFP tumor markers drawn and screening abdominal and renal ultrasounds every 6 months. As he hit 7 years of age, we thought the risk for developing Wilms was behind us. His screenings were to end at age 8. So, at one of our last scans, I heard the words, “There is a growth”. I remember that day so vividly. I couldn’t believe what I was hearing! We were almost at the end of all of this. MY child couldn’t possibly have cancer…that happens to someone else, not us.
And then our world was changed forever. We entered the world of cancer….
What then followed was a whirlwind of emotions, tests, scans, and blood work. Meeting with oncologists and surgeons, going to the clinic, feeling scared, angry, depressed and sad. How did we get here???!!!!
At Children’s Hospital for surgery; August 2012After several scans and tests, there still wasn’t a clear diagnosis. His growth was outside the kidney, not inside as seen with typical Wilms. Also, Chris’s AFP level was extremely high, which is also not typical of Wilms. Our only option at this point was surgery to get a definitive diagnosis. His surgery was performed at Children’s National Medical Center on the first day of the start of his 2nd grade school year. The tumor was able to be removed, but took with it part of his kidney. Unfortunately, there was spillage of his tumor, which immediately moved him from a Stage II to a Stage III cancer. Two slow painful days of waiting revealed Extrarenal Wilms Tumor, a rare form of Wilms. He went back to surgery the next day for insertion of his port. Chemotherapy and radiation (because of spillage) were to begin the next week. But then Chris started having abdominal pain, vomiting bile, and abdominal swelling. He was rushed off to emergency surgery two days later for intestinal obstruction. So a 3-4 days stay at the hospital turned into a two week stay. Chris then had 7 days of radiation and 8 months of chemotherapy. Within that time frame, there were several ER visits and 2 hospital stays.
Make-A-Wish trip Disney CruiseOf course our faith was shaken. How could it not be? I was so angry, sad, depressed, helpless and felt weak, when I knew I should be strong for my son. I felt like God had abandoned me. Why wasn’t he answering our prayers. How could he let this happen? I know I will never know the answer until He decides to reveal it to me. Through all of this, I have grown closer to God. I come to him in praise and thanks each and every day for what we do have, for being together in the present moment, for the nights I can still tuck my kids into bed and hug and kiss them. I never want to forget because it allows me thankful for today. I can’t forget because it has forever changed who we are. I look at my son today and see his strength and bravery and I feel truly blessed. Today I am happy to say that Chris is NED!!! We now live in 3 month increments…..one scan at a time!
