We are always in awe of the incredible hearts of children!
Today we want to send a HUGE Alex’s Army ‘Thank You’ and shout out to Emily Dunn!
This year instead of asking for birthday presents, Emily wanted to raise money and awareness for Childhood Cancer…she asked all of her family and friends to make donations to our foundation instead of presents! Her efforts raised $735.00 and with her parents match a whopping $1500.00!!!
But Emily’s generosity and philanthropy doesn’t stop there, we also understand that Emily is growing her hair in order to make a donation to provide wigs for children undergoing chemotherapy who lose their own AND she is participating in a fashion show to raise money for Seattle Children’s Hospital!!! Amazing work Emily, you are helping to make a difference in the lives of children battling cancer!
Tonight Show host Jimmy Fallon sent a video to a 13-year-old Leesburg boy with cancer.
Mathias Giordano was diagnosed with Osteosarcoma in July of 2012. He’s endured countless rounds of radiation and chemotherapy and had to have his right leg amputated below the knee.
“Yo, Mathias. This is Jimmy Fallon. I heard you’re a big fan. I think that’s cool,”
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.
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!
They are the “momcologists,” a nickname for the moms — and dads! — who know the horrific toll cancer takes on families and have dedicated their lives to helping others.
“We are every day moms all of a sudden thrown into this crazy cancer world and have to learn everything,” said Sherwood, 42, of Marlboro, New Jersey. “I probably know more than the average pediatrician about cancer.”
These parents have raised millions to find cures, helped families cope with the blow of a new diagnosis and offered financial support for lost wages, hotels during grueling treatments and sadly, for funerals.
For some, the work lasts long beyond the diagnosis, continuing the fight after a child is cancer free and even after a child has died.
And while “Mini” Timmy Tyrrell turns 10 on Monday, he’s been raising money for kids with cancer since he was six years old. He vows to never stop; in 2010, his friend Ella Day was diagnosed with a brain tumor.
“He saw the need and he wanted to help,” Ella Day’s mother, Karen Day, says of “Mini.” “He wanted to do anything he could do to help, [for] a six-year-old, that to me is astonishing.”
On the eve of his birthday, “Mini” has raised more than $200,000 for cancer research. Sunday, at the E.G. Smith Baseball Complex in Manassas, 400 players attended the third-annual kickball tournament to raise money for children with cancer.
A cancer diagnosis is a life-changing event no matter what age you are. But for young people it can be especially tough. Benjamin Rubenstein, two-time cancer survivor and alumni of first descents, joined us with more. https://firstdescents.org/
