Tuesday, May 31, 2011

Tuesday, May 31, 2011 -- Mattie died 90 weeks ago today.

Tonight's picture was taken in June of 2008. A month before Mattie was diagnosed with cancer. We took Mattie to Roosevelt Island to operate his remote controlled boat. Mattie loved gadgets and particularly wanted to understand how things worked. He went through his car and train phase, and as he was getting older, he still loved those vehicles, but his true love became boats. In fact, if you asked Mattie why he was saving his pennies and other money in his piggy bank, his response was always, "to buy a boat!" Mattie did not mean a toy boat either, he wanted his own life sized boat one day. He wanted to be "Captain Mattie." Unfortunately that dream will never become a reality.

Quote of the day: Love is an engraved invitation to grief. ~ Sunshine O'Donnell

Peter and I had a very active day. Certainly we are right on the beach and we could have stayed there the whole day. But sometimes when I find I am in a funk and my mood is low, doing something active and different helps me. So instead of just describing our day, I will show it to you in pictures!

This picture was taken on Sunday, as we were leaving Washington, DC to head to the beach. Memorial day is a special and unique holiday for our Nation's capital. What makes it an unforgettable visual and auditory experience is seeing Rolling Thunder. For those of you unfamiliar with Rolling Thunder, it was incorporated in 1995, and is a class 501(c)(4) non-profit organization with over 90 chartered chapters throughout the United States and members abroad. While many members of Rolling Thunder are veterans and many ride motorcycles, neither qualification is a prerequisite. Rolling Thunder members are old and young, men and women, veterans and non-veterans. All are united in the cause to bring full accountability for Prisoners Of War (POW) and Missing In Action (MIA) of all wars, reminding the government, the media and the public by our watchwords: “We Will Not Forget.”

Along our drive, we had to traverse over the Bay Bridge. Thankfully Peter and I have never experienced a back up or terrible traffic over this bridge. But it is a special sight to be surrounded by land and then all of a sudden, this bridge comes upon you and you are surrounded by water. It seems to be the symbol of vacation approaching!

As we were approaching town, I got a kick out of this sight and needed to take a picture of this tractor. It seems like the perfect visualization of going on vacation and having to slow down. After all, if this tractor were on the streets of Washington, DC, he would most likely get run right off the road.

Peter and I went to Cape Henlopen State Park in Lewes, DE today. I have never been to this park, but Ellen suggested we check it out and she told me that bicycles are available for free to visitors at the nature center of the park. I haven't been on a bicycle in years, but there is some truth to the fact that some skills you never loose. I must admit the last time Peter and I went bicycle riding together in the Outer Banks of North Carolina, it was LESS than a pleasant experience. It wasn't pleasant because a bee flew into my ear, which disoriented me. So I drove my bicycle right into Peter's (who was ahead of me), and I literally went flying through the air, and injured myself. I was a bloody mess. So I am sure he was hesitant to go out with me today. But I was determined and I needed an adventure and to do something different. We rode on the "Bike Loop Trail" of the park, which was about a four mile ride. Along the way, I saw a black snake, heard many beautiful birds, saw beautiful terrain, and we even traversed through time (back to the 1940s) and saw Fort Miles.

Along the bike trail were these amazing cactus flowers. I am happy that Peter stopped to photograph them! I should let you know however, that parts of this bike trail weren't easy. There were moderate and sometimes steep hills to pedal up, and yet the bicycles we were on had only one gear. It was hysterical at one point, because as I was struggling to pedal up hill, a family was passing me coming down hill and were cheering me on and telling me I could get up the hill. Most of the hills I managed to get up, but one I simply had to walk myself and the bicycle up the hill!

As we got to the peak of one of the trails, we got off the bicycles and walked around. As you can see Peter snapped a picture of me right by the ocean.

519 Battery Cantonment of Fort Miles-- This was an absolutely fascinating part of the bicycle trail!!!! This cantonment was comprised of 6 concrete block barracks. Typically barracks back them were built from wood, but because of the humidity and location of these barracks, the builders decided to use concrete blocks. These buildings are STILL standing today. Here is some information about Fort Miles:

Lying amidst rolling dunes, in the shadow of a World War II observation tower, is Fort Miles Historical Area. During World War II, the Delaware River was a chief priority for defense planners because of the access it afforded to the giant trade centers of Wilmington, Philadelphia, and beyond. Fort Miles, located in what is now Cape Henlopen State Park, was a key piece in the nation's coastal defense at that time. Henlopen State Park. In April, 2005, Fort Miles was added to the National Register of Historic Places. Fort Miles is a special place for families, history buffs, veterans, or anyone interested in learning about the Delaware shore and WWII.

Fort Miles has many observation towers that surrounded it. This one in particular is Tower 7. These towers were designed to protect Eastern shores from aerial and naval attacks. Peter and I had the opportunity to climb up Tower 7, all 115 steps of a spiral staircase! In the heat and humidity this was quite a physical challenge.

This is the view from on top of Tower 7. You can see the 519 battery cantonment in the background here.

Peter snapped a picture of what the Bike Trail Loop actually looked like. It was a lovely paved and serene pathway.

At the end of our four mile journey we landed back at the Nature Center of the park. Right outside the center were incredible birds. This little fellow is an Oriole, and like any oriole when he extends his wings there is a beautiful red stripe that stands out.

As we were leaving the park, Peter saw this deer up ahead crossing the roadway. The deer are very used to people in the park, so much so, that when he saw me, he stopped and posed. He wasn't frightened and even as we drove away, the deer remained in the same location to eat.

Peter and I went on several walks today as well. At around 5pm, we went out looking for bunnies. I did not have to go too far, since in Ellen's front yard there were two beautiful bunnies just sitting there. This particular bunny got used to us, since we took several pictures of him over the course of the evening.

During our second walk, we headed to the beach and literally there was NO one on the beach but us and the seagulls. It was a very peaceful sight.

Peter is beginning to relax, which is wonderful to see, and based on his horrendous spring work travelling schedule, he really needed this break.

I would like to end tonight's posting with a message from my friend and colleague, Nancy. Nancy wrote, "Both of your shares regarding Mattie were sweet and beautiful. I appreciate how difficult it must be to have children running to their parents and Mattie being felt, in spirit. As I've said often through these last few years, you are and will always be Mattie's Mom and Peter, his Dad.Thank you for such a heartfelt story last night. It is a gentle introduction to another week spent without him. Ooga booga."

Monday, May 30, 2011

Monday, May 30, 2011

Tonight's picture was taken sometime after Mattie's sixth birthday in April of 2008. Keep in mind this picture was taken only 3 months prior to Mattie being diagnosed with cancer. Mattie loved the whole cake and candle process, and typically what I would do after his party, was I would serve him left over cake and put candles on it and sing Happy Birthday all over again to him.


Quote of the day: Words are like nets - we hope they'll cover what we mean, but we know they can't possibly hold that much joy, or grief, or wonder. ~ Jodi Picoult


First and foremost, as today is Memorial Day, I certainly pause and reflect on Americans who have died fighting in all wars. These individuals gave their lives to uphold our freedoms and way of life. May we never forget these sacrifices and the families permanently affected by these losses.

This evening Peter and I said goodbye to Ellen, her family, as well as their friends who were visiting. Their friends are also parents at Mattie's school. I find at times that it is difficult to socialize with other parents. Most likely if you were to interact with me, you wouldn't visibly know how upsetting this can be for me. But I do absorb these feelings on an emotional level and it is quite difficult to come to terms with certain things. It is hard to fit in with other parents, because the likely form of conversation is about one's child or his/her school experience. In addition, I noticed that each of the children paired off with his or her parents, and yet there Peter and I were, and no one was running to us, calling out Mommy or Daddy, or playing with us. It is a sobering reality, which is why in many respects going on vacation is challenging for me. Which may explain why I rarely go on one.

I feel as if Peter and I saw four Mattie signs today. On the way to the beach, I was walking on the boardwalk and right in front of me was a pine cone. There weren't any other pine cones on the boardwalk. I seemed to be the only one who noticed it too. Naturally it made me pause and think of Mattie, and I bent down and picked up the pine cone. As other parents are escorting their live children to the beach, I am walking with a pine cone trying to reconnect to the spirit of mine. Later on when Peter and I were walking along the beach, we both spotted a beautiful yellow butterfly. There were NO other butterflies around, but this one, and it caught our attention immediately. But this was only our second out of FOUR nature sighting today. Peter spotted dolphins swimming and jumping by the shore line. They are wonderful sights to see, and I couldn't help but think if Mattie were with us, he would have simply loved this glorious gift.

At around 5pm, Peter and I went for a walk. From my recollection, 5pm is the time the bunnies come out and about in Ellen's community. Sure enough they did not disappoint today. We spotted five wonderful white tailed rabbits, and my one conclusion today was Mattie was sending me signs. He wanted me to know we are not alone and he is with us, it may not be so obvious, but if I look hard enough he will be there. When Mattie was a preschooler, we would take him to the Outer Banks of North Carolina each summer. We stayed in a community like Ellen's, which had bunnies which would come out at dusk. Mattie and I loved going for walks to have these special bunny sightings together. Which is why looking for bunnies at Ellen's is SO special to me.

Sunday, May 29, 2011

Sunday, May 29, 2011

Tonight's picture was taken in June of 2008. A month before Mattie was diagnosed with cancer. As you can see, Charlotte was hugging Mattie. Mattie described Charlotte as his "girlfriend." On that particular day, Ellen (Charlotte's mom) and I took the kids on a boat which was pulled by mules on the C & O canal in Georgetown. The kids enjoyed going through the water locks and spending time with each other. It is simply hard to believe that a month later we would hear that Mattie had cancer when he looks so happy and healthy here. 

Quote of the day: In times of grief and sorrow I will hold you and rock you and take your grief and make it my own. When you cry I cry and when you hurt I hurt. And together we will try to hold back the floods to tears and despair and make it through the potholed street of life. ~ Nicholas Sparks

Nicholas Sparks' quote caught my attention. Not only because I have read each of his books, but because in so many ways, Mattie and I shared this special kind of bond and relationship. Though he was a child and I am an adult, we were there for each other and we supported each other in our own ways. Mattie's death is a loss of great magnitude. I lost my son, a huge part of myself, and now am forced to live a future that has no definition or understanding. I, for one, can't forget the cancer treatments, the pain Mattie suffered, or his death. This will always be a part of my present and future. A future that is quite unlike what most people face.

Peter and I got on the road early today and we made it to the beach by 1pm. We had a nice lunch together and then headed to Ellen's house. Ellen, her family, and some of their friends are at the house for the memorial day weekend. Yesterday, Charlotte told her friends about us and about Mattie. As Ellen was relaying this message to me, she wanted me to know that Mattie is a part of Charlotte's life and she doesn't forget him. She informed her friends about cancer, particularly referring to Mattie's "bone bugs" and cells growing out of control. She also told them how brave Mattie was as he battled this disease. I think it is very meaningful when children try to educate other children about something they have experienced personally.

I feel thoroughly exhausted tonight. So I am signing off, but as always I thank you for visiting Mattie's blog and for staying connected to us.  

Saturday, May 28, 2011

Saturday, May 28, 2011

Tonight's picture was taken in May of 2008. We took Mattie to Calvert Cliffs in Maryland. This is a very special nature trail, that is about a mile in length. After walking, the trail leads you right onto the beach. The wonderful thing about this beach is if you are patient and do enough digging, you are sure to come home with sharks teeth. Mattie always had a good time visiting this well kept secret and as you can see in this picture he was all business as he was examining sand and sifting through it to find a prize. Mattie always left every visit there with several teeth in hand! 


Quote of the day: In grief we know the worst of what we feel but who can tell the end of what we fear? ~ Hannah More

I spent the entire day in front of the computer. I was determined to work on the grief and bereavement grant proposal for Georgetown University Hospital and complete it so that Peter and I can go on a week's vacation to the beach tomorrow without taking work with me. I just received the paperwork for the proposal yesterday afternoon, so this was a QUICK turn around time. It was after spending over 9 hours on this today and part of the day yesterday, that I had to accept that without my degree I could not possibly achieve what I did. Sometimes I wonder if the stress of getting a doctorate degree was worth it, but the program taught me how to write, think logically, and synthesize and generate research. After I submitted my draft to Dr. Shad tonight, she called me immediately. She loved what she was reading and wanted to let me know her feedback. The ironic part about this is it meant a lot to me that she thought I had the skills to do this and was competent enough to take this on. I not only proved that to myself today, but I had to accept that what I accomplished was unique to me and my skill set. I rarely give myself positive feedback, but even this, I couldn't help but acknowledge.

So literally in a week's time I gave a presentation at the Medical Grand Rounds at Georgetown University Hospital, in which I had to tell Mattie's story and the lessons learned, then two days later I hosted the Foundation's Walk, and now I just completed a grant proposal. That may not sound like a lot, but when you consider the emotional component to each of these activities, it is actually a FEAT of an achievement!

I need a break for a week and Peter and I are thankful to Ellen, Charlotte's mom, for allowing us to escape to her beach house. So the next time you will be hearing from me, I will be by the Atlantic Ocean. I would like to share some more pictures with you from the May 22 Foundation Walk.

A brand new addition to our Walk this year, was having food from Clyde's at the Mark Center. This particular Clyde's was Mattie favorite place to eat. However, not only did we have Clyde's food, but the food was grilled for us right at the event by the executive chef herself, Rebecca Jacks. Rebecca and I had never met each other, but she heard about us and about Mattie from the restaurant's general manager. When Clyde's offered to donate food to the Walk, I had no idea that Rebecca was also going to volunteer her time, energy, and resources. In our book, she is a very special person! To learn more about Clyde's at the Mark Center, please visit:
http://www.clydes.com/main/RestaurantsDetail.cfm?Restaurant=Clydes_at_Mark_Center&Section=Main


Rebecca's food went over extremely well and she really worked with me to figure out what types of food would hold up outside without access to refrigeration! I admired her concern for the safety of the food and for those consuming it. Rebecca and Liz Cortes, from the Lego store, are very rare and fine individuals. Because from my experience so many people are motivated by incentives and final outcomes. These ladies are motivated by the cause and the passion to help children with cancer. I salute them and hope this is only the beginning of our connection together.

For three years in a row, there has been a bake sale at our Walk! The bake sale is coordinated by one of Mattie's caregivers, Marisa. Marisa never knew Mattie when he was well. Instead, she helped me at home when Mattie was battling cancer. Despite the challenges he presented, Marisa never skipped a beat and was a compassionate and trustworthy caregiver to Mattie. Marisa is now attending college at NYU, and what you should know was that only days prior to the Walk did she complete finals. Despite that she came home and started her summer break by baking175 cupcakes to sell at the bake sale. She is a very special person and does a remarkable job at keeping Mattie's memory and spirit alive. He would have definitely approved of cupcakes at his Walk. After all, during treatment cupcakes were one of the foods Mattie actually loved to eat!

Marisa set up a cupcake decorating station at the Walk and as you can see, people of all ages loved designing their own cupcake and then of course eating it!

Friday, May 27, 2011

Friday, May 27, 2011

Tonight's picture was taken in 2009 at the Mattie March. This was a day that I will always remember. I recall the excitement in the air and the amazing turnout of supporters for Mattie. Mattie couldn't get over how many people were there for him. In retrospect, I am so happy he had this moment in time. If I could title this picture, it would simple say "FRIENDS." Pushing Mattie's wheelchair around the track was his big buddy, Brandon. Next to Brandon was Robbie, one of Mattie's favorite Childlife interns, and right by Mattie's side, holding the side of the wheelchair was Zachary, Mattie's closest preschool buddy. If this picture doesn't scream out support and friendship, I don't know what does! 

Quote of the day: The greatest pleasure in life is doing what people say you can not do. ~ Walter Bagehot

Today was another non-stop and busy day. I began the day with a visit to the dentist's office for a check up. I typically see the same hygienist, but today, I found that Libby went on vacation and they assigned me to another person. This new hygienist and I took an instant disliking to each other, and needless to say, her cleaning was painful. Painful enough that I had tears in my eyes. When the whole procedure was done, I was absolutely NOT happy. So I spoke to the management in the office and not only had them write in my electronic file that I never wanted to revisit this particular hygienist, but I also had them make a note that if these personnel changes happen again in the future, they have to alert me ahead of time. I am on a crusade lately with doctors. For many of them, their lack of regard for patients is simply intolerable. If you think I am wrong, try to schedule an appointment with a doctor when YOU want to be seen!!! Good luck. I realize their schedules are busy, but if the rest of the business world ran like their schedules, NOTHING would get accomplished.

I then spent the rest of the day running around doing post-Walk chores, and then I headed to the Georgetown University Hospital to meet up with Dr. Aziza Shad. As many of my readers know, Aziza is the chief of the pediatric oncology division at the Hospital, in addition, she was the attending on call the week that Mattie was dying in the hospital. You can learn a lot about a doctor while watching her help your son die. Aziza was presented with a grant opportunity and she asked for my help in putting it together. It is due next week, and Peter and I are scheduled to go to the beach for a week on Sunday, so wish me luck with this important task. The grant would provide funds to Aziza to establish a grief and bereavement program for families who lost a child to cancer at Georgetown.

Tonight's Walk pictures focus on everything LEGO! We had a wonderful LEGO presence at the Walk this year, thanks to Liz Cortes. Liz is the assistant manager at the Tyson's Galleria store. Liz met Mattie in August of 2009, when Mattie's cancer was determined to be terminal. Liz held a special Lego building evening in the store for Mattie and his buddy Abigail. It was a special evening, because Mattie had the store all to himself and he got to build with several wonderful Lego employees, Brandon and Jared. Mattie touched Liz's heart and out of her own good will she accomplished SO many amazing LEGO activities for us at this year's Walk. Liz also brought 15 Lego folks with her to the Walk, and they all volunteered their time with us for the entire event. To me, they are a group of very special and unique individuals, who are passionate about our cause and helping children. 

There were THREE Lego stations at the Walk. The first station, was for Lego independent building. As you can see there were hundreds of Legos dispersed on every table. For a Lego fan, this was heaven! If Mattie were at this event he would never have left the Lego tents! Mattie would have been so proud of what Liz accomplished. She captured Mattie's spirit and love for building and creating with Legos at our Walk.


 

Another wonderful independent Lego
build table!

This picture makes me smile, because clearly DANIEL wanted to let us know he was here and loves Legos!

The second Lego station was the Lego Mosaic. A Lego creator by the name of Doug Hill donated to us 23,000 Lego bricks and his creativity. With the bricks he recreated our Foundation's Logo. However, the fun part was the Walk attendees got to assemble the pieces of the logo. As you can see in this picture, Mattie's kindergarten friend, Tim, was standing in front of a grey Lego base plate. On the plate, was marked as to which Lego piece went where. Tim worked diligently on this project, and he actually accomplished a good portion of the logo.

What I find fascinating about these pictures, is I did not tell the photographer which children to take pictures of. However, it seems ironic that the children participating in the Lego Mosaic were all of Mattie's friends. Featured here is Livi. Livi is Campbell's sister (Mattie's close kindergarten buddy). As you can see she was working with black and white Lego pieces and filling in the base plate.

Here is a picture of Liz Cortes, from the Lego store, working along side Tim. As you can see from the previous picture, Tim really made some great headway on this base plate!

Tim's whole family participated! Eliza and Alex, are Tim's brother and sister!















I wanted to show you this picture, because pay attention to the GREEN structure in the background. This was a frame constructed of Lego base plates. When each of the grey base plates (like the one you saw Tim working on) was complete, it would literally be attached to the green base plates. Since all the parts were made from Legos, they stuck beautifully together.

So here is a close up. We went from all GREEN, to slowly each of the filled in grey base plates were snapped into place on the green ones. Mind you each white, red, black, yellow, and orange piece of this logo, was made out of LEGOs.









You can see Liz was transporting a filled in grey base plate over to the green frame and was going to snap in this last tile.

Peter and I with many of the fantastic Lego volunteers! The fellow in the front row in green (next to Liz) is Jared. Jared was one of the Lego employees who worked with Mattie in August of 2009.

The final Lego station at the Walk was hosted by the Washington, DC Metropolitan Area Lego Train Club (WAMALTC). This group displayed a wonderful working Lego city, with motorized trains to capture the imagination.


This evening I decided to do laundry. While dealing with that process, I ran into my 80+ year old neighbor, Kathleen. She too was doing laundry and we landed up chatting for an hour. She was very fond of Mattie and in fact, reminded me of the first time she met him. Which so happened to be in the laundry room! She said she was impressed with Mattie the moment she met him. She thought he was bright, engaging, and mature for his age. She said he captured her attention and wanted to spend more time just listening to him. YEP that sounds like my Mattie. I learned though that Kathleen was just diagnosed with cancer. However, based on what she had seen Mattie endure, she decided to keep her current quality of life and not elect to undergo treatment. She said many people do not like talking to her about this, and though she was hesitant to bring it up with me, she knew I would understand. Which I do! I greatly respect her decision not to undergo treatment and instead to live her life to the fullest now, without being incapacitated from surgery and chemotherapy. I suppose Kathleen's talk tonight made me once again reflect on how Mattie has touched all of our lives. Even in the lives of people who did not know him as well as me.

Thursday, May 26, 2011

Thursday, May 26, 2011

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.

Because of Lauren’s limb sparing surgery she does have physical limitations that other kids don’t have. She has had to drop out of the sports she previously participated in and doesn’t participate in gym at school. I just thank God everyday that she has regained her health and is moving forward with her life.

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.

Wednesday, May 25, 2011

Wednesday, May 25, 2011

Tonight's picture was taken in May of 2008. We were walking on Roosevelt Island with Mattie, and as was typical for this time of year, Mattie was collecting tent moth caterpillars. If you look closely at the stick he is carrying, you will see a caterpillar right on it. It is the simple things like this that remind me of Mattie and though at the time, I wasn't wild about collecting caterpillars, I have now come to miss it.

Quote the day: Memory is a way of holding onto the things you love, the things you are, the things you never want to lose.


My parents and I spent our last day together, before they return to Los Angeles tomorrow morning. In the afternoon we met up with my graduate school friend, Amany. Amany and I have known each other for years and with each other's support we managed to survive and graduate from a doctoral program in counseling. I use the word "survive" because in order to obtain a doctorate degree you wouldn't believe the various tortures you are put through. It is a test of endurance, perseverance, humility, political savviness, and most of all determination. Not unlike the hazing process fraternity pledges go through, there is a great deal of UNREPORTED mental and emotional hazing that goes on to obtain a doctorate degree. If you think this problem just lies with Amany and I, I assure you it doesn't. Once I graduated with my PhD, I decided to develop a conference series to help doctoral students. I ran sessions to discuss how to complete a dissertation and to survive the process. Guess what? Each conference session was ALWAYS packed!!! Meaning that this is a COMMON problem, but an UNSPOKEN one. Actually the issue is so pervasive in academia that I always joked that one day I wanted to go on Oprah to expose this abuse.

My dad asked both Amany and I at lunch the following question... If we had known back then what we do now about obtaining a doctoral degree, would we have still pursued the degree? It was an interesting question. Cancer has allowed me to see that we waste a great deal of time pursuing stressful things in our lives. I lived with a great deal of stress for years trying to jump through professional and academic hurdles. Was it worth it? It is hard to say. But the conclusion I have come to is that the doctorate helped me to develop a certain level of confidence and a great deal of strength to handle inordinate amounts of stress. So in all actuality it prepared me to tackle cancer. Because after surviving a doctorate, I won't allow any medical doctor to intimidate me and I lived many years with little to no sleep balancing work, clinical work, and graduate school that this made me an ideal candidate to survive time in the PICU. 

I have received some beautiful emails over the last couple of days about the Foundation's Walk on Sunday. I appreciate all the positive feedback and it is through these comments that I know Peter and I are on the right track to effectively bringing awareness to pediatric cancer.
I am still sorting through pictures, but I wanted to share a couple more with you tonight. This photo features Lauren, our Face of Hope. Lauren sold hundreds of bows at the Walk and she was joined by her friends Katie and Colleen. Katie and Colleen assist Lauren in making Bows for Hope. For those of you who were unable to attend the Walk, Lauren is an Osteosarcoma survivor and was diagnosed with this disease a week after Mattie. Though she was treated in PA, and Mattie was in DC, Lauren's mom and I became e-mail buddies. We went through the treatment process together, shared stories, frustrations, and fears. In so many ways, being connected with Lauren makes me feel connected to Mattie and I am so honored she designs bows and donates all her proceeds to Mattie Miracle. She is an amazing young lady. I will be sharing her Walk speech with you shortly.

At Lauren's Bows for Hope table, she was visited by my friend, Carolyn. Carolyn was our chair of our very successful Walk Raffle. Next to Carolyn is her daughter, Ellie. Ellie and Mattie went to preschool together and next to Ellie is Charlotte (Mattie's girlfriend). Both girls were admiring the bows! In fact, Carolyn told me that Ellie bought several bows and plans to wear a different hair bow to school each day this week. I am actually quite impressed with the feedback I am receiving from attendees about Lauren's impact on their children. Children educating children, can be very powerful indeed.

In this picture is Margaret and Susan. Both are my friends. Margaret was Mattie's preschool teacher and Susan is a former student of mine. For two years in a row, both women have run our Foundation Table. This year the Foundation did very well on site, and we can not thank our attendees enough for their level of financial support and generosity!







Our friend Liz sent us several wonderful photos today. I happened to love this one in particular. One of the children's activities at the Walk was balloon creations. Clearly you can see this wonderful balloon hat on this cutie's head!

I am not sure who is more adorable here, the girls or the balloons they are holding. Either case, together, they are a great combination.

Noah was also our official Face of Hope. Like Lauren, Noah is an Osteosarcoma survivor. Noah had to have his leg amputated above the knee to remove the tumor. Noah actually did a beautiful job explaining how he feels about not having his leg. I will be posting Noah and Lauren's speeches on the blog very soon.

Noah and Amanda are pictured in this photo. Amanda also has a type of bone cancer, called Ewing's Sarcoma. As you can see, she too had to have her leg amputated.

To me this picture screams out HOPE! As you can see Amanda and Noah are running together on the track. It seems symbolic of the fact that nothing is going to hold them back from living their lives. I could type these words, but the picture I feel does a MUCH better job at conveying the message.

I would like to end tonight's posting with a message from our friend Liz. Liz's son was in Mattie's kindergarten class and you should also note that Liz was the thoughtful and caring person who chaired the first Mattie March in 2009. For that, we will always be grateful to her. Liz wrote, "I just wanted to tell you how terrific I think the walk was. It seemed so professionally done. It sure has come a long way since our first three years ago. My children had a great time. The program, the special guests, and the posters along the walk, were so well thought out and executed. The foundation's goals and what you have already been able to accomplish were clearly laid out. In short, it was fantastic. I was sitting in those bleachers thinking you are such an amazing woman and that your skills/education/career will make such a huge contribution to the cancer fight, especially to those families going through it (an obviously very neglected aspect of the whole ordeal). May God bless you and Peter in ways you have yet to realize. You are making the world a better place--all for the love of Mattie."