Mattie Miracle 10th Anniversary Walk was an $119,000 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

October 1, 2011

Saturday, October 1, 2011

Saturday, October 1, 2011

Tonight's picture was taken in May of 2005. As we were touring around the garden we were visiting, Mattie spotted a fountain filled with plants and fish. He climbed right on top of the fountain's ledge and began pointing out all the things he was seeing. This was NOT an unusual occurrence for Mattie. Mattie was the master of observation, was curious, and had a way of inspiring you to be curious too.

Quote of the day: One cannot be deeply responsive to the world without being saddened very often. ~ Erich Fromm


As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.
Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries

Today's weather was a thorough shock to the system. On Friday it was in the 70's and today it was in the 50's and raining. Last year, I went to an outdoor fair called Art on the Avenue in Del Ray, VA and enjoyed it very much. It is a wonderful arts and crafts fair that is fun to walk and browse through especially when it is a lovely weather day. I was looking forward to going to Art on the Avenue today and introducing Peter to it, but the weather was awful. Despite the mizzling rain, people showed up to the fair by the boat loads and really did not seem to be bothered by the weather. I on the other hand looked like I was ready for the Arctic. I had a jacket, scarf, and gloves on, and even with all those things, after an hour, I was frozen solid. So we did not stay long.

I have developed a head cold this week, so I came home and rested while Peter went for a walk on Roosevelt Island. From his journey, he brought me back three leaves. This is something Mattie would have done on a Fall walk, and so when Peter presented me this gift, I knew what the underlying intention was. Also three is a special number to us, because Mattie collected things in three's.... there would be one leaf for Peter, one for Mattie, and one for me.

If Mattie were alive today, he would be in the fourth grade just like the rest of his friends. It is funny how that works out. Mattie dies, our world stops, and yet for others the world continues on and children still have play dates, parents still are planning parties, and things seem to return to normalcy for others around us. Naturally that is my perception, and I do of course know that some families are still deeply affected by Mattie's death. Nonetheless, I am aware of the fact that the fourth grade parents from Mattie's school are gathering tonight for a party. A party we most likely would have gone to if Mattie were still alive. It is a very strange feeling to know such a party is occurring and we no longer fit in. Actually it is a sobering reality, which brings me back to the point that losing a child is a life altering reality. A reality which I can try to keep describing, but not one you can possibly understand if you aren't living it. It is hard enough to lose your child, but when you lose the things and people that used to occupy your world, it makes daily existence extremely challenging.  

September 30, 2011

Friday, September 30, 2011

Friday, September 30, 2011

Tonight's picture was taken in May of 2005. On one of our weekend excursions, Mattie and Peter were looking through and collecting rocks along the shore line. Using the small ones, Peter was teaching Mattie how to skip a stone in the water. I must admit prior to meeting Peter, I never heard this term, much less ever saw someone skip a stone. Mattie was fascinated with stone skipping in the water, and wanted desperately to learn how to throw a stone and get it to skip three or four times on the water's surface like Peter.

Quote of the day: Grief can awaken us to new values and new and deeper appreciations. Grief can cause us to reprioritize things in our lives, to recognize what's really important and put it first. Grief can heighten our gratitude as we cease taking the gifts life bestows on us for granted. Grief can give us the wisdom of being with death. Grief can make death the companion on our left who guides us and gives us advice. None of this growth makes the loss good and worthwhile, but it is the good that comes out of the bad. ~ Roger Bertschausen

As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.
Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries

One of the family's at Georgetown University Hospital, who we got to know while Mattie was battling cancer, let us know today that their daughter has a potential recurrence of her cancer. This young lady has been fighting this horrible disease for a while, and she and her family live on a constant roller coaster of emotions. When I learned about this news today I was sickened. This lovely girl and Mattie battled cancer at the same time, and during that time, I had the opportunity to get to know her parents. Her parents were extremely supportive of us and were always in amazement with how we kept it together despite Mattie's intensive surgeries and chemotherapies. Certainly Mattie has been gone from our lives for two years, but I will always remember what Mattie endured treatment wise. His body was exposed to amazing levels of toxicity, and I have no doubt his regimens would have been overwhelming and down right depressing to an adult counterpart. No I am not a medical doctor, but unlike most medical doctors, I have lived cancer 24 hours a day, seven days a week, for 15 months, and saw what it did to my son, my life, my marriage, and my future. This personal insight and day to day logging of the process from my perspective gives me a certain level of knowledge that I am sorry... no medical doctor has. For this knowledge can't be captured in a textbook, a journal article, or even through residencies and rounds.

When I learned of this young lady's potential battle with cancer again, it made me feel ill. The thought is simply overwhelming for her and for her family. I can't even begin to highlight the level of fear, of hopelessness, and of the sheer lack of control they all must feel. Living with childhood cancer almost feels like living with a ticking time bomb inside your body, and unfortunately NO one knows when or if it will go off again. Childhood cancer quickly illustrates that our fate is not in our own hands and also shows the vulnerability of the medical profession. Because modern medicine can't solve and CURE childhood cancer. We are conditioned as a westernized society to believe that seeing a doctor will make us feel better and that with medicine our lives will improve. The disheartening reality which families of children with cancer learn is it takes much more than medicine to treat cancer. It is my hope that you will pause tonight and think about this teenager and her family and wish them strength.

Though I went about my day, this news weighed heavily on my mind. I did spend part of the day with Mary and Ann, but then needed to go for a walk to clear my head. I walked over three miles, but it did not do anything for me. But I was determined to enjoy our last day of warm weather before we get hit with Fall weather tomorrow.

I would like to end tonight's posting with a message I received today from Network for Good (our electronic newsletter and walk management site provider). If this message compels you, I urge you to sign the petition which can be found by clicking through the blue link below.
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A group of Senators wants to reduce tax deductions on charitable donations to raise federal revenues.

Tell your Senators and President Obama that you don't want to see charities hurt by this terrible idea.

Making it harder to financially support charitable organizations would severely impact thousands of charities and the Americans that rely on them.
From dispensing nutritious food to poor families to rescuing abused or abandoned animals, charities provide crucial services to those who need help most.

In times of struggle, we need to support charities and the vital work they do, not defund them.

Join Network for Good along with our friends at Care2 and the Nonprofit Technology Network (NTEN) in asking the Senate and the President not to hurt charities by reducing tax deductions on donations.

To sign the petition, go to:
http://www.thepetitionsite.com/takeaction/133/452/331/?z00m=20076595
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September 29, 2011

Thursday, September 29, 2011

Thursday, September 29, 2011

Tonight's picture was taken in May of 2005. Mattie was three years old and we took him to the butterfly house at Brookside Gardens in Maryland. It was a beautiful enclosed garden with butterflies flying all around. The majority of us at the exhibit were fascinated by the butterflies however, none of these creatures decided to land on us! Mattie however was the chosen one. As you can see this monarch butterfly matched Mattie's orange shirt. Mattie understood the gentle nature of butterflies and he knew he couldn't touch it. However, the sheer joy on Mattie's face let us know he was happy to be selected as a landing spot. My friend, Tanja, has commented on this picture the last time I posted it. The comment resonated with me, because she said butterflies only land on special people. I would like to believe this butterfly sensed Mattie's uniqueness and gentleness of spirit, and therefore graced him with its presence.

Quote of the day: Even his griefs are a joy long after to one that remembers all that he wrought and endured. ~ Homer 

As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.
Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries

I want to thank SO many of you who are emailing to let me know you are voting for Tricia. Keep up the good work! For those of you who have posted this information to your facebook and twitter accounts, I can't thank you enough!

I went to visit Celina today. As some of you may know from the Foundation Walk, Celina is the professional who cuts my hair and owns a salon in Washington, DC. Celina and her family volunteered at the Walk this year and painted and decorated participants' nails. This was a popular activity at the walk for girls of all ages! Any case, I have known Celina for over a decade and I know she deeply feels for me over my loss of Mattie. Today, not only getting a haircut, her staff gave me a head and neck massage. I did not ask for this, but when the salon isn't busy, Celina instructs her staff to do this. As soon as they felt my neck and upper back, they all cringed. Not surprising since this is where I carry my stress, along with my head! In any case, why am I telling you this? I guess the reason is this experience today confirmed for me the importance of two things, touch and being treated with kindness. In our harried lives, where we are glued to technology, we forget about the importance of human connections. Holding hands, hugging, and simply touching a person's hand or arm for example. I have found in crisis moments and moments of intense stress, nothing helps to illustrate the bond between people like touch. All I know is this simple act of kindness today made me feel a whole lot better.

Later in the afternoon, I went to visit Mary (Ann's mom). Mary is used to seeing me on a regular basis, and being away for over two weeks, I am sure was confusing to her. She was very happy to see me and she loved the fall flowers I brought to decorate her room. While chatting with her, I was arranging flowers, and Mary was shocked to see me take two bunches of flowers and transform them into an arrangement. It is nice to have a fan! Any case, I also concluded tonight that even though Mary and I clearly are a generation or so apart, we think in a similar fashion. I attribute this to the fact that we both lost a son to cancer. Cancer has changed our perspective on life, on how we view problems in life, and on how we feel about people. However, we are careful in sharing these inner thoughts with others, because sometimes our pronouncements may seem insensitive or heartless. We are certainly neither, but maybe losing something most precious to us, helps put things into context and gives us a clarity of view like we never had before.  

I would like to end tonight's posting with a picture and then a message from my friend and colleague, Nancy.

Peter and I want to thank Bill (in yellow) and his wife, Katita (in gray) for raising $1,275 for the Make-A-Wish Foundation in Mattie’s Memory. Peter and Bill were Arthur Andersen colleagues, and though Enron destroyed that company, the spirit and the connections of those who worked there remain.



My friend and colleague Nancy wrote, "After reading the last few entries of the blog, I am left with a warm glow and peacefulness. I think you have created another profession for yourself should you ever want one: writing travel brochures. Your descriptions of events and surroundings allows the reader to experience your observations vicariously and vividly. I think that is what I take away from most blog entries, the energy, love, and commitment that Peter and you made to your charming and gifted little boy. Mattie was very smart when he picked his parents. He knew that they would take care of him in all kinds of situations and conditions. I am consistently reminded of the creativity displayed by you especially on those difficult days of intense treatment. As this is the season of reflection for the Jewish people, the blog has been a source of focus. We generally wish someone we care about L'Shanah Tovah. This means that we hope for a sweet, healthy, and happy New Year to our friends and family. I always add a peaceful year! I think I understand how some of these wishes are difficult to accept when you have lost your precious Mattie and purpose as a Mom. Vicki, you were, are, and always will be Mattie's Mom. His presence surrounds Peter and you and you continue to protect and include him in each and every day. I am looking forward to being with both of you in a few weeks where I can give you a proper hug. With love today and every day."

September 28, 2011

Wednesday, September 28, 2011

Wednesday, September 28, 2011

Tonight's picture was taken in Mattie's hospital room. This picture was taken most likely in November, after Mattie's two major limb salvaging surgeries. I can tell because of the way Mattie's right hand looks, the fact that his left hand was all wrapped up, and that he was wearing his velcro pants that I bought him to make dressing easier post-surgery. Sitting right next to Mattie was Tricia. Tricia was one of Mattie's outstanding nurses. We met Tricia early on in Mattie's treatment process, and as the weeks continued on, she became a vital part of our hospital family. Tricia is the nurse that would bring me hot tea, Peter coffee and clean towels to shower with, and who shared aspects of her life with us to help us feel connected to the outside world. Tricia listened to our concerns, shared our fears, and most of all understood and appreciated Mattie. Mattie felt Tricia's kindness and care and one day while he was coming back from the Childlife Playroom into the PICU, he shouted out for Tricia. When she came over, he told her he loved her. Which was high praises coming from Mattie, since he did not give his love away easily. I saw many sides of Tricia over a 15 month time span. She can be funny, fun loving, and humorous. But she is also HIGHLY competent, no nonsense and can easily put a doctor in his/her place. Her priority is patient care and she never gets confused about that fact, regardless of the medical hierarchy that so clearly exists within a hospital setting. Though Mattie is no longer part of our lives, Tricia remains with us. She is a faithful blog reader, and she and her children participate in our annual Foundation Walk. There are so many times I wonder why Mattie developed cancer and died. It is a heartache of grand proportion, yet in the midst of this devastation, he has introduced and connected us to people who will always be firmly in my heart and a part of my life.

Quote of the day: Friendship improves happiness and abates misery, by the doubling of our joy and the dividing of our grief. ~ Cicero

I began my day by being unable to get out of bed. The three hour time difference and yesterday's flight knocked me out. However, as I began checking my Blackberry I could see that Linda (Mattie's childlife specialist) sent me a message. In the message, she asked me if I heard the news from Tricia (Mattie's nurse). Linda let me know the good news.... that Tricia was a semifinalist in Johnson and Johnson's Amazing Nurse Contest. 

Before I went away to Los Angeles on September 10, I came across a contest on line through Johnson and Johnson. As I read about the contest and its prize, I decided to submit an amazing nurse application. Peter will attest to this, I had a very hard time writing the 300 word essay on Tricia (since being verbose is one of my strong suits) and then once I wrote it, I had a CHALLENGING time actually submitting the application on line. Each time I tried sending it, it failed to go through. Finally with Peter's help, on the fifth attempt, the application went through! However, I never heard from Johnson and Johnson after submitting the application. Well that is until Linda and Tricia emailed me today. Somehow receiving the news about Tricia jump started my day and put me in a better frame of mind. Mattie would have wanted Tricia to be acknowledged in this way.

Tricia told me that Johnson and Johnson called her a day ago to let her know that she is one the the 20 semifinalists in this contest. Twenty semifinalists were selected out of 1200 applications!!!! Amazing and yet considering who I was writing about, not surprising. However I will need YOUR help to qualify Tricia as one of the five finalists. Once the finalists are selected they will then be judged by Johnson and Johnson and only one will then receive the grand prize which is an all expense trip (4 days/3 nights) for two to Los Angeles and two VIP tickets to attend CNN Heroes: All Star Tribute live broadcast show. She would then be featured in a TV commercial sponsored by Johnson and Johnson. 

How can you help? It isn't complicated or time consuming, all you have to do is vote for Tricia on line. It is VERY simple. The five finalists are selected (from the 20 semifinalists) based on the number of total votes received. Those five with the MOST votes, become the finalists and have a chance at winning this contest. Johnson and Johnson allows each voter to vote multiple times for Tricia. The only catch is you can only vote ONCE a day. Which is why each day for the next month, I will greet you on the blog with the same question. The question will be..... Have you voted for Tricia today? Following the question, I will then post the link that will take you directly to the voting site.

Your vote counts and your participation is needed. Though there isn't anything we can tangibly do for Mattie now, I do consider voting for Tricia as your way of remembering Mattie and honoring the cancer battle he endured. Click on the link in blue, find Tricia's name (Patricia Grusholt) and then click on it and vote. Please tell your friends and family about this contest and also consider using all the computers in your home to vote. I used my desk top and my lap top, and therefore voted twice today!!!!
http://wildfireapp.com/website/6/contests/157336/voteable_entries


I want to share a portion of the email I received today from Tricia regarding this exciting news. She wrote, "I want to tell you how very humbled I feel that you have nominated me for the Johnson & Johnson nurses competition....it is an amazing honor!!! I received a call from them the other day to tell me that I was 1 of the 20 semi-finalists from ~ 1200 nominations nationwide. The gentleman was telling me that nationwide voting starts 9/27/11 through 10/25/11 and he encouraged me to network for myself, telling people they can vote everyday throughout those dates. So, I am letting you know because I knew you would support me with gaining more votes. I have already planned that if I were to win you and I could go to the CNN Heroes All-Star Tribute in L.A., visit your parents and the L.A. Cappuccinos and I would ask the JNJ people if we could do the commercial in honor of Mattie and all pediatric cancer patients to support the foundation in raising pediatric cancer awareness and help with funding and research for these brave children. That would truly be amazing!"

When I shared the news with my mom, she was also elated and wrote, "Congratulations on making a difference by taking the time and using your talent to bring Tricia's contribution to cancer stricken children to the attention of JNJ. I have seen Tricia in action and know that she went beyond the call of duty to care for Mattie while he was in treatment at GUH while never forgetting that he had the heart and soul of a little boy who needed love and diversion to deal with the limitations imposed by his affliction with bone cancer. When she entered his room, it was always with a smile and a sense of humor which brought out the best in Mattie and got him through some dark and difficult days. Her compassion came from the heart and Mattie, sensitive and discriminating as he was by nature, knew he could trust her and allowed her to make "deals" with him to accept unpleasant treatments when he was inclined not to cooperate. She was aware of the psychological ramifications of cancer and realized that including him in the decision making process gave him a sense of control over his terrible situation. Mattie was strong willed and needed "to be heard." Tricia did just that each and every day she was with him and kept him happy by laughing at his antics and encouraging his artistry. When I go to vote on election day, I only wish I could vote multiple times but alas am limited to one vote. In Tricia's case, I can unleash that passion and it will give me joy to vote for her over and over again. I will urge everyone I know to do the same thing!! Tricia deserves the award and the honor inherent in being the chosen one!!"

September 27, 2011

Tuesday, September 27, 2011

Tuesday, September 27, 2011 -- Mattie died 107 weeks ago today.

Tonight's picture was taken in September of 2008 in Mattie's hospital room. Mattie was getting an infusion through a pump, which was sitting on the bed behind me. Otherwise if Mattie was not hooked up to a machine, he would have been up, off the bed (remember that in September of 2008, he had no surgeries yet and was fully mobile) and most likely hopping about the room. However, during this 20 minute infusion, I literally had to put my head down from exhaustion. I was beyond wiped out. Peter snapped this picture of Mattie and I during this quiet or not so quiet moment! The irony was Mattie was the one battling cancer and undergoing treatment, and yet he had a great deal of energy, which I feel the picture illustrates so well.

Childhood Cancer Facts of the Day:  Common psychosocial issues from cancer (Children's Cancer Foundation):

1) Inhibited and withdrawn behavior
2) Fear of trying new things
3) Peer relationship difficulties
4)  Frustration and discouragement
5)  Loss of independence
6)  Anxiety from effects of illness/treatment
7) Impact on siblings



Peter and I got up this morning very early to get ready for our morning flight back to Washington, DC. Both of us were on autopilot and walking around like zombies. As we left my parent's house to drive to the airport, we were greeted at 7am by this wonderful sight. The mother deer and her baby came out to say good-bye to us. Peter hadn't seen the baby LA Cappuccino during this visit, so this was a wonderful morning surprise.
On the way to the airport, we saw working oil rigs. I remember when we first moved to Los Angeles in 1984, I was fascinated by this sighting. Since I never saw an oil rig while living in New York. It is funny to think that over 20 years later, these oil rigs are still pumping away!



It was an unusual occurrence today, the Los Angeles International Airport was practically empty. So we breezed through security and sat for quite a while by the gate until we could board the airplane. While sitting down, I noticed a man in a navy sweater pass us by. As soon as I saw the sweater, I said to Peter, "there is Mr. Rogers." Naturally this wasn't Mr. Rogers, but the sweater reminded me of the one Mr. Rogers wore at the beginning of each of his TV shows. Any case, within minutes, Mr. Rogers came up to talk to us, and sat right next to me eating a sandwich. He started talking to us because he was attracted to Peter's Red Sox hat. The Red Sox cult is clearly alive and well even at the airport. Peter and Mr. Rogers traded Red Sox stats and scores. While they were talking, I looked at his luggage and could see he was an United Airlines Flight crew member. We chatted for at least 30 minutes and I told him that I have a fear of flying. He says that this is not uncommon since most people do not like flying because they do not like the lack of control. I must admit at one time I used to worry about mechanical failure, the competency of the pilot, and so forth. Now those things are not the first issues that cross my mind. The first thing that bothers me is being locked into a flying bus with hundreds of people. Some of whom maybe unstable and irrational. So don't you know I asked Mr. Rogers how the airline industry trains its flight crew to handle out of control passengers. He told us one interesting story about a passenger who was talking to himself, sticking $20 bills up his nose, and telling his seat mate that he hated his life and wanted the chance to maybe blow something up to prove his worth. Fortunately the seat mate told Mr. Rogers (mind you his name is NOT Mr. Rogers) what she observed and within minutes four FBI agents who happened to be on the plane surrounded and isolated this unstable man. I naturally asked Mr. Rogers what would have happened if the FBI were not on the plane. He couldn't go into detail but he said there are procedures and devices on board to help manage such difficult situations. Needless to say Mr. Rogers took a liking to us and comped drinks for us while on the flight. He most likely thought alcohol would help my fear or situation. But I do not drink aboard a plane. I like my wits about me. Not sure why, but I feel that it is important to be alert. I naturally couldn't do much if something happened aboard a plane, but being alert is how I stay in control.
As we took off from LA, we passed over Catalina Island and Peter snapped a picture of it.












The entire flight was very smooth and it made me appreciate the beauty of flying. But just when I let my guard down, that is when the turbulence begins. There were many thunderhead clouds over DC tonight and we passed through several. One big cloud provided a wild enough ride for me, to want to absolutely jump right out of the plane. Despite that, the pilot did a great job in a difficult situation. This picture shows some of the cloud we flew through.

In the midst of landing, we saw a rainbow. That seemed like an amazing sight, which made us pause and think of Mattie. The irony is after we landed and were in a taxi to come home, we saw three deer by the side of the road, right outside the airport. The scene came on too suddenly for me to take a picture of it, but after seeing LA Cappuccinos for 18 days, I can safely say that our DC deer are VERY different in shape and coloring. But the reason I am mentioning the deer is that there were three, just like my family used to be... Peter, Mattie, and I. I couldn't help but think that this threesome was a direct natural message from my Mattie. On the 107th week of Mattie's death, I do not put anything passed him.



When I arrived home tonight, I received a letter and a gift from my friend and colleague, Nancy. Nancy sent me this beautiful magnetic butterfly from her summer trip to Canada. She wanted me to know that she understands September is a difficult month for me with Mattie's death and knowing his friends are going back to school. This Mattie butterfly is now attached to my kitchen window frame and it will always remind me of the fragile and yet beautiful life of Mattie Brown.

I would like to end tonight's posting with a message from Mattie's oncologist and our friend. Kristen wrote, "Warm wishes for your safe return to hot and humid (yet rainy) Washington.  Vicki, thank you for posting a blurb on your blog regarding Go4theGoal.  I know how important this is to the Go4theGoal foundation and I'm sure they appreciate your tribute. Thinking of you this Tuesday and everyday and thankful for the impact you are making in this world."

September 26, 2011

Monday, September 26, 2011

Monday, September 26, 2011

Tonight's picture was taken in September of 2008 in Mattie's hospital room. Mattie's technology teacher, Mary, brought him this wonderful Mac computer that his school gave him to use during his cancer battle. Mattie was thrilled with Mary's gift and felt very special to have his own computer. Each time Mary came to the hospital to visit Mattie and give him a technology lesson, he used his computer. Notice however that Mattie was using the mouse with his left hand. Mattie was NOT left handed. But the tumor in his right arm was so huge and caused him such great pain, he compensated by becoming very skilled with his left hand and his feet.

Childhood Cancer Facts of the Day: 10-20% of children are diagnosed with Post Traumatic Stress Disorder (DeMaso & Shaw, 2010).

I received a message from Mattie's oncologist and our friend, Kristen. One of her pediatric patients died from a battle with Ewing's Sarcoma, a form of bone cancer. In honor of his death, his parents created the Go4theGoal Foundation and on each September 27 (their son's birthday), they sponsor a DRESS IN GOLD DAY. I admire their creativity and desire to help children battling cancer. In honor of their cause consider wearing GOLD tomorrow.

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Dress in Gold on September 27 in honor of "Dress 4 Pediatric Cancer Day" sponsored by the Go4the GoalFoundation.


Go4theGoal Foundation is a 501(c)3 non-profit charitable organization founded in 2006 by Dr. Richard and Beth Stefanacci, soon after their oldest child was diagnosed with Ewing's Sarcoma, a rare form of bone cancer. Go4theGoal provides children undergoing cancer treatment and their families with financial assistance, runs fun hospital-based programs, grants special wishes and supplies Apple iPads, iPods and MacBooks to children and pediatric oncology units in over 20 hospitals across the country. Since their son's death in 2007, G4G has funded over 500k in innovative research for Ewing's Sarcoma. For more information about the dress 4 pediatric cancer day project, go to....
http://www.go4thegoal.org/index.php?option=com_content&view=article&id=49&Itemid=41

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My mom and I began our day doing our 3.5 mile walking routine. On route to the track, I was greeted by this precious sight. A baby deer following its mom right in the middle of the road. Mattie would have gone absolutely hysterical with this sighting! I will greatly miss the LA Cappuccinos and the greenery of the hills that surround my parent's home. Somehow being so close to nature like this is very special for both Peter and I.

We had another full and last day in Los Angeles today. Peter and I are packing up now and head home to DC tomorrow morning. One of the final pictures I leave you with from LA is the living room window of one of my parent's neighbors' house. Some of you may recall this window last year, since I posted a night picture with all these jack o'lanterns lit up in October of 2010. This neighbor does not have her display a glow yet, but somehow these pumpkins just capture my attention. I must admit that I sit back and try to imagine what the collector of these jack o'lanterns is like and wonder how this collection even got started and how long it has taken her to accumulate such a display. At the moment I have more questions than answers, but one thing is quite clear, people in Los Angeles start decorating for Halloween quite early!

Sunday, September 25, 2011

Sunday, September 25, 2011

Tonight's picture was taken in September of 2008 in Mattie's hospital room. That afternoon, Mattie received a visit from Mary, Mattie's technology teacher. My faithful readers will remember that Mary tried to visit Mattie weekly during his cancer battle. Mary understood Mattie's battle all too well, after losing her mom to cancer. Mary was determined to keep Mattie engaged, learning, and connected to the outside world. She did this through technology and naturally by her using her warm, patient, and loving demeanor. Mattie and Mary had a special connection, and there would be days Mary would visit and Mattie did not even want to see a computer. That didn't impact Mary in the least, she would switch gears and find other ways to engage Mattie, while at the same time giving me a break to walk the hospital hallways. One day after Mary had worked with Mattie for an hour, I came back into Mattie's hospital room, and found that he and Mary were designing an elevator out of a huge packing box that Linda (Mattie's childlife specialist) gave him. Mary's flexibility and support will never be forgotten. I also want to note that Mary is the special person who created at least three Mattie videos with me. She designed the 20 minute video we displayed at Mattie's celebration of life ceremony and she also helped me design the 4 minute video posted to the top of this blog which I used during the Grand Rounds presentation I did at Georgetown University Hospital in May.

Childhood Cancer Facts of the Day:  10% of children are diagnosed with depression (DeMaso & Shaw, 2010).


My mom and I started our day by doing our typical 3.5 mile walk. On our way to her track I spotted this mother deer with her baby. As you can see these deer were on some one's front lawn. I honestly have never seen SO many deer. During this two week trip, I have seen deer everyday. I will greatly miss these LA Cappuccinos when I return home. I have gotten so used to seeing them and their grace, beauty, and connection to the land are things I very much appreciate.

After our walk, again I had a special sighting. I was greeted by a young buck. To me he looked so regal! I can't look at deer without thinking of the movie, Bambi. Mattie and I watched Bambi often. Naturally to me this movie was disturbing, since a mom is killed and her baby is left behind to grow up without her. I never thought in my wildest dreams that the scenario would ever be reversed. So somehow seeing these deer remind me of my times with Mattie.

This afternoon, we all went to see a musical called, The 1940's Radio Hour. The musical is like taking a sentimental journey to a bygone era. As an audience member you get to experience a "live" radio broadcast from the Hotel Astor's Algonquin Room on December 21, 1942. The spirit of that era, when the world was at war and pop music meant "Boogie Woogie Bugle Boy," "Have Yourself A Merry Little Christmas," and "I've Got a Gal in Kalamazoo" (all of which are in the show), is wonderfully captured. Full of 1940s big-band music, swing dancing, patriotism, and old-fashioned sound effects.
I grew up in a multigenerational household. My maternal grandmother began living with my parents soon after her husband died from cancer. So by the time I was born, my grandmother was an integral part of our immediate family. As such, she and I spent a lot of time together and since she was of a different generation than I was, she introduced me to stories of her life as a young girl, her life as a young adult, the changes she observed in our Country, and naturally the things she enjoyed such as music, cooking, and her way of thinking. I have no doubt that my time with my grandmother greatly influenced me and explains my more traditional and worldly ideas and values. I tell you this because watching today's play about the 1940's, was not abstract to me. I knew many of the songs from that era and the play captivated me by the patriotism and community connections that united a Country and its people at that time.

I would like to end tonight's posting with a note from the play's director. I found her note to her audience very meaningful, and after yesterday's play which lacked direction and purpose, today's play was very welcomed. Nan McNamara wrote, "As I headed out the door for my first rehearsal to direct this production, I asked my mother-in-law who was born in the 1930's if she had any words of wisdom that I could share with my cast, specifically about radio. She answered, "the radio was everything to us, it was all we had." Nowadays, it's hard to imagine a time when any one piece of technology would draw young and old together. For my generation, it was the television. But even that -- a family gathered around one devise in the same room as entertainment -- seems to be fading away. Pearl Harbor had been the loss of America's innocence. And in December of 1942 the radio was indeed everything. The cast of characters you are about to meet are brought together by a common passion for what they do, and a common reason for doing it -- to make people forget about their troubles (in this case WWII) through the magic of radio and "the theatre of the mind." This story harkens back to a time when the Country was not polarized, and readily -- even passionately -- lived with less so that the troops overseas could have more. Americans at home sacrificed virtually everything for the greater good and the hope for a return to normalcy. It makes one wonder if we, as a Country, would so eagerly do that today? None of these characters are perfect, but they each have hopes, dreams and aspirations. And at the end of the day (or in this case, at the end of the broadcast), what's really important to them? Friends, family, connection, love. Maybe things aren't so different after all." 

September 25, 2011

Saturday, September 24, 2011

Saturday, September 24, 2011

Tonight's picture was taken in September of 2008 on the playground at Mattie's preschool. Mattie's preschool wanted to support us during Mattie's cancer diagnosis, and scheduled a special play date with Mattie's preschool buddy, Alex. In this picture you can see Mattie and Alex on the tire swing. I recall many days on this playground when Mattie was healthy and happy. Some days it is hard to believe that these days actually existed, Mattie was part of our lives, and that we were parents.


Childhood Cancer Facts of the Day: 15% of children are diagnosed with anxiety (DeMaso & Shaw, 2010).


We went to a community play this afternoon entitled, Shooting Star by Steven Dietz. The premise of the story is.........
Snowed in overnight at a middle-America airport, college lovers Elena Carson and Reed McAllister have an unexpected and life-altering reunion. Elena has stayed true to her hippie-ish, counter-culture path, while Reed has gone predictably corporate and conservative. As the night gives way to laughter, banter, remembrance and alcohol, Elena and Reed revisit a past that holds more surprises than they imagined—and a present that neither of them could have predicted. Filled with laughter and ache, SHOOTING STAR is a bittersweet romantic comedy about the middle days of our lives, and how we got there.



This play was 90 minutes long without an intermission. It also had only two actors in the entire play with a bare bones set of a waiting lounge in an airplane terminal. The play had great potential but in the end it was disappointing. Perhaps I have high expectations for people, or maybe I have the confidence that if given the right opportunity and reflection, we as human beings have great potential and will do the right thing. That did not happen in this play, the same dysfunctional communication pattern this couple had with each other in the 1970's (which entailed keeping secrets and a total lack of honesty about thoughts and feelings) remained true today. To me the play was in a way depressing. It was depressing because it really illustrated that people can't or won't change behaviors, even if these changes would produce greater happiness for the individuals in questions. It makes me wonder why we are so afraid to tell those in our lives that they are important to us, that without their presence are lives would not be as rich or meaningful? Certainly if these two characters could have done this in the play, it would have changed their outcome. In that sense the play made you analyze human interactions and why we protect ourselves from being vulnerable with those closest to us.
In typical fashion the LA Cappuccinos did not disappoint us. One of my faithful blog readers and now my friend, Diane, who I just recently met last week wrote the following to me, which I absolutely LOVE. Diane wrote, "I loved hearing about the difference between your "D.C. Deer" and the "Cappuccinos"! Let's see: the "Caps" are thinner... yep, we're always on diets, they are darker: "working on their tans", they have black tails (haven't a clue) and they have longer ears: we're nosier!! See! it can all be explained!!!"


I love how Diane provided me with this cute explanation for why the LA Cappuccinos (a name I gave to these LA deer) are thinner, darker, and have bigger ears than my Roosevelt Island deer. Her description made me laugh, because while we are talking about deer, we could also be talking about several Hollywood types. Hollywood has even impacted the deer!
 
 
 
On my nightstand today I found a snail shell. That may not seem odd to you, but the snail shell is a direct reminder of Mattie. Peter went for a walk this morning and came back with a snail shell in hand. He did not tell me about it, he just simply left it on my nightstand to find. When Mattie came to visit my parents, he loved finding snail shells. In fact, he even named a snail living in my parent's garden, snaily! So as soon as I saw the snail shell on my nightstand, I knew this was a message. The message in essence was that Mattie was with me and thinking of me. It is ironic how simple components of nature to you, may speak and represent volumes to me. It is within nature that Peter and I both feel most connected to Mattie. Needless to say, snaily's shell is coing home with me to Washington, DC.