Sunday, April 29, 2007
Time for a Q&A session!
What's your question? It can be about childhood cancer, fundraising, volunteering, Heroes for Children specific questions, etc. We don't claim to have all the answers--our office consists of three moms, two of whom experienced childhood cancer on a very personal level with our daughters. But oncologists, social workers, and child life therapists we aren't (but can I tell you how much we HIGHLY respect them? Some of the biggest HEROES for children out there!). To get the answers, we'll consult those we know to find out what you want to know.
Your participation will make a difference with this Q&A session. Simply write your question in the comments section below. We'll find out the answers in one entry in the near future.
I'll start--The question I want to know is how to get young children to swallow the not so fun medicine. I bet the nurses working with kids will have a few tricks they can share!
Tuesday, April 24, 2007
In 2006, Designer Nancy Peters heard the story of Heroes for Children and the expansion efforts into Houston. Inspired by Taylor Brewton and Allie Scott, Nancy decided to use her talent of creating hip, functional jewlery to benefit the cause. The Heroes Necklace was presented to me at the end of February at an Underwriters Party at Tootsie's in Houston. Using the red heart of the HFC logo as her starting point, Nancy integrated red stones with dangling hearts. One turqoise bead serves as the remembrance bead--remembering both the spirits and hearts of Taylor and Allie, as well as remembering every child served by Heroes for Children.
Personally, I only wear two necklaces. Most days, you will see me with a necklace with two dangling charms--each a black and white picture of my gorgeous daughters Allie and Maggie. This necklace is so special to me that I have not found another that I am willing to wear instead. That is, until the Heroes Necklace. I proudly wear the Heroes Necklace and share the story. Help share the story of Heroes for Children with your purchase of the Heroes Necklace today!
Monday, April 23, 2007
The problem for me, though, was not lack of passion or intention, rather lack of direction. How do I help? What do I do? At that point, in the fall of 2004, I did not personally know anyone with a child battling cancer (looking back almost three years later, I am amazed and saddened at how quickly that changed!) Like so many other women, I continued to check the Scott website daily, looking for a way to get involved and help. I had never really volunteered, never been involved with a nonprofit organization, never had a cause that inspired me to get out there and pound the streets and raise my voice about. Okay, world, I had the cause and I had the passion - what do you want me to do with this?
With hindsight being 20/20 the way it always is, I see now that my personal progression from a floundering, lost "what do I do?" working mother of 3 to now (a passionate crusader for the pediatric cancer cause) could not have been better orchestrated if the universe wrote a map just for me. First, Jenny suggested that a good way to help was to walk and fundraise for the Light The Night walk, a major fundraising campaign for The Leukemia & Lymphoma Society. Although I felt a little hesitant - after all, I did not "know" anyone else in Rhode Island that knew of Allie's story, and I had never participated in any event like this - I thought "okay, well, I can do THAT". So I took a deep breath and left my comfort zone and signed up and raised money and walked.
And with that one, simple step (or series of steps, really, since it was a 2.3 mile walk!) I began my own volunteer voyage. I progressed from being a walker, to a team captain, to a national leader on the former Friends of Allie Light The Night team. I started out bringing bagels and muffins to clinic at Hasbro Children's Hospital in Providence, then became an active volunteer with The Tomorrow Fund (a nonprofit similar to HFC in scope and sequence, based in Rhode Island). With my move across the country to Austin, TX this past summer, I am overjoyed to be able to volunteer with my initial inspiration, Jenny Scott. Heroes for Children represents everything that I stand for in the battle against pediatric cancer: it's personal, focused, tireless and committed.
Most fulfilling of all, though, are the families and children I have grown to know and love along the way. Once I opened my heart and eyes to this crisis, the cosmic word must have spread, because suddenly, I found families dealing with pediatric cancer dropping into my life, seemingly from nowhere. First, a fellow teacher's 3 year old son, whose family had moved to Rhode Island only a month earlier (her husband was stationed at the Newport naval base), was diagnosed out of the blue with ALL. Then, the mother of another woman who was here in Rhode Island with no friends or family somehow found my contact information through Friends of Allie and asked me if I could help support and encourage her daughter, whose 4 month old son was just diagnosed with ALL. I became immersed in the southern New England pediatric cancer support circle, making meals for families, signing online guestbooks in websites, and making care packages for children during their inpatient chemotheraphy treatments. Much to my dismay, I found there were hundreds of "Allie's" fighting cancer right here in my backyard. The more I came to know mothers and fathers and siblings and patients dealing with this health crisis, the more my desire to help grew.
to be concluded...
The Volunteer Voyage, Part I
The Volunteer Voyage, Part II
Monday, April 16, 2007
This new chapter in the life of HFC has been so exciting to see. Many more topics are coming, more thoughts about childhood cancer and more updates of the services of Heroes for Children.
While your vote is so important to us, your opinion on content is even more crucial. We want to hear from you--what do you want to read about? What blog topics pertaining to Heroes for Children or childhood cancer interest you? How does this blog get better?
Thanks for voting!!
Monday, April 9, 2007
Hello. My name is Dario and I am 15 months old. I was diagnosed with leukemia when I was eleven months old. Before being diagnosed, I was a happy baby who loved to play with other kids, and eating was my passion. I live in Brownsville, Texas, but when I got sick, the Kangaroo Crew from Texas Children's Hospital brought me to Houson. I have been in the hospital since November 2006 and I'm still fighting to get well and go back home. I was given seven days of chemotherapy. Then, I got an infection in my catheter that went into every organ in my body, including my brain. I was on an oscillator, dialysis, three blood pressure medications, and nitrogen to help my lungs and heart for a month and a half. Several times my parents were asked to disconnect the machines because the doctors always told them I was not going to make it.
With the help of God, I was able to survive all of this, but the but the infection I had gotten made me get hydrocephalus. The ventricles in my brain got bigger, and my head also got bigger. The doctors decided to put a drain in my head to help it release all the liquid inside. For now, neurologists can't say what kind of damage the infection left on my brain. All I know if that I am not able to see my parents anymore and I also get seizures.
In March 2007, I was operated on to get another shunt--a drain, but this time inside my head that goes all the way to my stomach where the liquid will be released through my urine. My parents are hoping that someday I will be able to see them again. Neurologists say that babies my age, their brains continue to develop until the age of two. Hopefully, this will help every part of my brain to get better. I am still waiting to finish my hospital chemotherapy to go back home. I miss my house and friends so much, but I am going to continue fighting to the end. Thanks to all the people who help out families like mine that are in need. God bless all the people who help families like mine.
You're very welcome, Dario. What a beautiful little boy you are.
Tuesday, April 3, 2007
Many of you have subscribed to the Heroes for Children Blog through the FeedBlitz registration on this site. We apologize that you have not received updates in the past week to the Heroes for Children Blog. We had a minor glitch that has now been repaired. We hope that you will now begin receiving your e-mail updates that they site has been updated.
There are several new updates to the HFC blog, including a very touching personal account from one mother learning of her child's cancer diagnosis. Please be sure to catch up if you missed any blog entries, post your comments, and help us spread the word! If you have a Blogspot, MySpace, or other website, be sure to link us.
A banner is available for you to put on your own page as well! E-mail me at email@example.com if you would like the text to add the banner to your site. Thanks to our supporter, Penny, for creating this awesome banner for us to use.
I appreciate your support and love for Heroes for Children. If there is a topic you would like to see on the HFC Blog, please let me know.
Monday, April 2, 2007
Around six months of age, Brandon was eventually diagnosed with Beckwith-Weidemann Syndrome (BWS), a rare childhood overgrowth disorder. We were told Brandon had a very mild case. No problems were expected. He would just be a chunky baby and lose his weight once he started crawling, etc. By the time we found out he had this, we were already behind on the standard BWS protocol: AFP levels checked every six weeks until the age of eight, and an abdominal ultrasound every three months until the age of five. Though rare, some BWS kids develop cancerous tumors. At our urging, the pediatrician scheduled the first scan in early December. He said “we’ll go ahead and schedule, but I’m sure we’ll find nothing.” Those words echo in my mind all the time.
We were happily preparing for our very first Christmas with our two beautiful boys. Excited first time parents, we had everything up and ready weeks before Christmas. The tree was decorated, presents were wrapped, and the stockings were hung with care. Two weeks before Christmas, we got “the call.” The call that would change our lives as we knew them, forever.
I knew something was wrong when our Pediatrician called instead of the nurse. He told me a solid mass was found on Brandon’s ultrasound and we had to see a pediatric oncologist right away to find out what was going on. He said “sometimes these turn out to be nothing.”
My heart dropped, I think deep inside I knew this was not going to be just nothing.
The next day we were to have a “consultation” with the Pediatric Oncology Staff at Medical City Dallas, everything happened so fast. Brandon was admitted and the word, Hepatoblastoma was tossed around. I was extremely unprepared, and beyond devastated. We thought we were coming in for an appointment, and that they would say “it’s nothing, sorry for the inconvenience.” We never thought we would be admitted. This is where the train derailed and our nightmare truly began.
The first night was the worst. I was in denial, and I was angry with everyone. Angry at the nurses that were poking my upset baby, angry at the doctor’s who were telling me we could not go home, angry that this was supposed to be our first Christmas together. The anger soon melted away to painful heartbreak and fear. The days events had left us tired, yet neither of us could sleep. Brandon whimpered. I know he was tired. For a baby that was used to co-sleeping, I imagined he found the cold metal bars of the hospital crib less than desirable. In order to soothe him, I put him in his stroller and rolled it up next to my little couch. He seemed to watch me for a long time, like he was making sure I was still there. I watched his long lashes finally close as he drifted off to sleep. Every once in a while he would wake and I was right there, rolling him back and forth all night long.
As the morning dawned, I could not believe we were still there. I longed to wake from this horrible nightmare. A cancer diagnosis could not be confirmed until he had a biopsy. Although all the signs pointed to Hepatoblastoma, they still needed proof. I think I pretty much stayed in angry denial thru all this. Brandon had his surgery, and a few days later, we had the meeting a parent should never have to have. Our baby does have Stage III Hepatoblastoma, a rare liver cancer. So rare, that only one in a million children are diagnoses with it. That’s 100 new cases each year from the U.S. ARE YOU KIDDING ME?? It has to be MY baby???!!! I felt like someone punched my gut. I felt lightheaded, sick, and the blood seemed to drain from my body. Brandon was sitting on my lap smiling thru all this, Aiden playing on the hospital floor. “Keep it together for the boys,” I kept silently telling myself, as the tears flowed. How could this be happening?! He is just a baby!!!! A BABY!!! A MUCH WANTED BABY!!!! Confusion and heartache ripped at my soul as our oncologist, whom I have grown to admire and respect told us the statistics, his treatment plan etc. Nothing would ever be the same. We spent our first Christmas in the hospital and Brandon started his first round of Chemo a few days later…
Coming Soon! Part 2 Chemotherapy