Tonight's picture was taken during the Mattie March in 2009. Mattie was sandwiched between Brandon (his big buddy) and Robbie (a childlife volunteer Mattie was very fond of at the Hospital). They were holding an umbrella over his bald head. Mattie disliked wearing hats as well as sun screen, so fortunately he had good friends looking out for him. What I want you to notice however in this picture was the cup that Brandon is holding. This was NOT an ordinary cup, meaning it was not filled with fluid. Do you want to guess what it was filled with? If you guessed caterpillars you would be right. In fact, Mattie placed a caterpillar on his left arm, and you can see him playing with it in the picture!
Quote of the day: I measure every grief I meet with narrow, probing eyes - I wonder if it weighs like mine - or has an easier size. ~Emily Dickinson
This morning I took my parents to the airport, and as I am writing tonight's blog I know they have already landed safely in Los Angeles. It was a strange day in a way. A day where I wasn't planning the walk and a day where I had no company in my home. This is a lot to adjust to actually, especially since the Walk has defined my life quite intensely over the last two months.
I am continuing to dig out from the Walk, organize paperwork, and pack up all the items we take out each year to host such an event. However, these items are all over the place, not just at my home, but also at the homes of my key volunteers. So slowly this week I am consolidating everything. I went over to Ann's house today to collect her piles so I can sort through them, and in the midst of that, I spent several hours in her garden weeding and planting. It was a super hot and humid day, but as my faithful readers know, this is how I like it.
As I continue to share Walk photos with you this week, I decided to focus tonight's posting on the actual Walk Program. The event itself took place from noon until 4pm. However, at 2pm, all our participants gathered for a 30 minute presentation. During this program our supporters heard from Peter and I as well as from our two official Faces of Hope, Lauren Chelenza and Noah Grove, and their moms, Carey and Rachael. This year's program ran smoothly and it was very meaningful and powerful for attendees to hear from Lauren and Noah. They made pediatric cancer real for their audience and I was very proud of both of these young survivors because telling your story and sharing your thoughts and feelings in front of hundreds of people is not easy. But they did it with grace, beauty, and sincerity.
This is how I introduced our special guests....................................
Peter and I could not think of a better way to bring awareness of childhood cancer and the impact it has on the family than for you to hear from two amazing cancer survivors, our faces of hope, and their moms. I am honored to be in the presence of Lauren Chelenza and Noah Grove.
• I know the types of treatments Lauren and Noah survived and the obstacles they have and continue to face. Yet despite this, they actively speak and educate others about pediatric cancer.
• It isn't easy to retell your cancer story, which is why I so admire their strength and courage and their passion to want to help others.
Lauren is 13 years old and lives in Langhorne, PA. Lauren is an Osteosarcoma survivor and is approaching her second anniversary of being No Evidence of Disease. Lauren was diagnosed around the same time as my son, Mattie. We became connected with each other through Mattie's blog. Her mom, Carey and I endured childhood cancer together and in essence as I was tracking my son's progress, I was tracking her daughter, Lauren's as well.
Lauren is the founder of "Bows for Hope." Which is an organization that builds awareness about childhood cancer through the creation of her beautiful duct tape bows. I am wearing two in my hair today. Lauren creates hundreds of bows a year, and 100% of their proceeds comes back to the Mattie Miracle Cancer Foundation.
Noah is 12 years old and lives in Frederick, MD. He is an Osteosarcoma survivor and this year marks his 7th anniversary of being No Evidence of Disease. Noah and his family created Noah's Courage foundation. Over the last five years they have raised close to $75,000.00 for Georgetown University Hospital. Noah's dad, Chris, featured a horse in the Preakness yesterday and through this event Noah has had the opportunity to bring further community awareness to childhood cancer.
Below you will find the speech that each special guest delivered.......................................
CAREY CHELENZA
My name is Carey Chelenza and I am Lauren’s mother. My sister introduced me to Vicki’s blog a short time after both Mattie and Lauren were diagnosed with osteosarcoma in their right arms. It was nice to have Vicki to compare notes with about the treatments our children were going through. We got to meet Vicki and Peter in Washington a couple years ago at the tree lighting ceremony for families who have or have had a child with cancer. Unfortunately we never got to meet Mattie.
Before the summer of 2008, the thought of having a child diagnosed with cancer was the furthest thing from my mind. Little did I know that our family was about to join a club that no one ever wants to be a part of. Having a child diagnosed with cancer is a life changing event. You lose the control you thought you had in your life and are told by social workers that the change in your life is your ‘new normal’, a phrase that Vicki and I both hated, because it is not normal for your child to have cancer. You also gain more knowledge than you ever wanted to know about pediatric cancer.
Since Lauren’s diagnosis, our family has become more sensitive and concerned for other families going through this experience. I find myself connecting with other parents through the Internet to give any support I can to someone going through a similar situation. Lauren and our family have seen other children that Lauren became friends with, who lose the battle to this horrible disease.
Having a child that has been diagnosed with cancer is something that never leaves your mind. This past winter Lauren had multiple consecutive colds, many more than usual. Of course, I was wondering if it had something to do with either her cancer treatment or a recurrence of her cancer.
If it wasn’t for the technology in this day and age, we would have never met Vicki and Peter. We are very happy to have connected with this family and are proud to have Lauren do work to support their Foundation.
LAUREN CHELENZA -- FACE OF HOPE
Hello, my name is Lauren Chelenza and I am a Osteosarcoma survivor. I was diagnosed in August 2008, accidentally, when I had an x-ray of my spine for scoliosis, and a tumor was discovered in my arm. I had surgery, to remove the cancer in my arm and went through chemotherapy treatments for a year. But, I am perfectly fine now. I have had no evidence of disease for almost 2 years. While undergoing treatment, kids like Mattie who had and was going through the same things as me gave me motivation. It also gave me hope to know that we were going to battle it together and never give up. Having cancer changed me in many ways. I became stronger and unfortunately faced what it is like to have to wear a wig, be very sick, and not be able to go to school for a year and instead be in the hospital. But having cancer made me realize that we all take like for granted, while other people are hoping that they will see a tomorrow. It was very hard for me going back to school after treatment because I had to wear a wig, deal with being able to lift your arm up and somewhat guarding my arm at times to make sure that no one bumped into it in the hallways. Also, keeping up with homework and assignments that I basically never had in a year. What inspired me to create Bows For Hope was that I was upset about Mattie passing away, and I didn't want anyone else to have to go through the same thing that Mattie and I did. So I wanted to raise money for Mattie's Foundation and lots of people started to like my bows after I did them for an English "How to" project. What you can do to help children and teens like me is for you to donate to the Mattie Miracle Cancer Foundation. THANK YOU! :)
RACHAEL GROVE
Good Afternoon, my name is Rachael Grove and I am the proud mother of 2 children, Noah and Carson. My oldest son Noah was diagnosed with Osteosarcoma at the age of 4 1/2. The day the biopsy came back positive ranked up there as one of the worst days of my family's life. We went from getting ready for kindergarten to spending the next 8 months hospital bound. AND then to have to tell your then 5 year old about a decision that his mom and dad had to make for him that would affect the rest of his life. A decision that no parent should have to make. We had to do this all because of cancer........... It is with these faces of hope that we see here today, that gives me hope that I will see a cure for cancer in my lifetime. With that, I would like to introduce my hero and son, Noah.
NOAH GROVE -- FACE OF HOPE
Hi, my name is Noah Grove and I am 12 years old. I am a 7 year cancer survivor. I was diagnosed with Osteosarcoma, the same cancer Mattie had, when I was 4 1/2 years old. I had to have chemotherapy for 8 months. At that time I lost all of my hair. As you can see, I also lost my left leg to this horrible disease. I don't remember much of that time, but I remember my parents telling me that my leg was sick and went to heaven. Even though I am now cancer free, I am still not like the rest of the kids my age. Cancer took away my leg which means I can't run as fast as my friends or even my little brother. I used to go to bed at night praying that I still had my leg. But now that I am older I realize that this is my life now. My favorite sport to play is soccer and I have to play goalie because my prosthesis keeps me from playing the position I'd really like to play. I have been very lucky that I have good friends and no one has ever made fun of my leg. It is my wish that no kid has to go through what Mattie and I went through. That is why it is so important to me that I help raise money for the Mattie Miracle Cancer Foundation. It is an honor to be here. Thank you!
After Lauren and Noah spoke, the crowd took to their feet and gave these young survivors a standing ovation! It was a wonderful sight to see, which explains my facial expression on the left. I was happy and also so grateful that the audience gave Lauren and Noah such a well deserving reception!
After the standing ovation, I then spoke to the audience about the four main achievements that the Mattie Miracle Cancer Foundation accomplished this year (I will share the speeches Peter and I delivered in another blog posting). While I was talking, the photographer captured Lauren and Noah listening. In a portion of my speech, I talked about Mattie and how his life continues to motivate and inspire me to help other children with cancer. Mattie is what motivates me to do a walk each year! I have no idea when this picture was taken, but I would surmise that these facial expressions were a reaction to the personal information I was sharing.
The Mattie Miracle Cancer Foundation is honored that Lauren and Noah served as our Faces of Hope this year. They are excellent role models and deserve to be commended for the awareness they bring to the community regarding childhood cancer.
The Mattie Miracle Cancer Foundation is honored that Lauren and Noah served as our Faces of Hope this year. They are excellent role models and deserve to be commended for the awareness they bring to the community regarding childhood cancer.
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