Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 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

Random Shots of Mattie, Family and Friends

September 12, 2015

Saturday, September 12, 2015

Saturday, September 12, 2015

Tonight's picture was taken on September 2008. This was before any of Mattie's surgeries as you can see he was freely using his right arm. Mattie was in the hospital's outpatient clinic and doing what he loved.... creating and designing with clay. Mattie was forming a boat and inside the boat he put stick people. Mattie could create at that table for hours, as long as he was given the freedom to design from within. If someone else tried to direct his art or tell him what to do, that wouldn't have work out! Fortunately Mattie had Jenny and Jessie (his art therapists) who believed and valued this freedom of expression and realized through this freedom Mattie was then able to build trust and rapport with them and communicate about his feelings with them. 


Quote of the day: When one loses a child, is it really ever over? ~ From Downtown Abbey



This week, Peter and I received this beautiful tribute collage through Facebook. It was designed by Timothy Beck. Tim lives in Phoenix and devotes his creativity to bringing happiness to families whose children have cancer. Tim designs these tributes on his own accord and then sends them to families. He has created hundreds of them and they are very much appreciated by families. I know we loved seeing it this week, on Mattie's anniversary. Tim selected the photos on his own accord from Mattie's blog and then designed this composition. Here is some information on Tim that he posted on Facebook:

If I have ever created anything for your child, the seed for its creation was officially planted on this day, 6 years ago. From August 3rd, 2009 to December 15th, 2010, I spent Monday evening in the oncology playroom of Phoenix Children's Hospital.
Because it was the last volunteer shift of the day, quite often only a handful of children would be in there; which in turn provided a more intimate experience. I made gem bracelets with the girls; played computer games with the boys; built a virtual zoo for the little ones; among other things; all while dancing around IV poles, drip lines, and electrical cords.
To say it was life changing would be a huge understatement. As a result, I cannot allow my integrity to be put into question. The unfortunate position of having to defend it has been and will continue to be vigorously refuted. Luckily these incidents have been few and far between.
With all of that said, I want each of you to know that my passion and heartache is neither feigned nor exaggerated. As I have said before, this isn't a hobby or a stepping stone to something bigger. It is exactly as you see it. And although my pain is not your pain, it is nonetheless every bit as genuine.


This evening Peter and I took a walk to the Kennedy Center. By day I have terrible noise of construction on my deck and by the evening hours, we have horrible noise coming from the Kennedy Center. This is the first year they have held an outdoor event like this, which has been going on for over a week. The event features skateboards. It reminds of something I would see by the beach. Basically skateboarders are skating up and down ramps, to live music. Music that is enough to make you want to put on ear plugs. The event is free and people sit in stands to watch the skateboarding and to hear the music. 

This event draws a lot of people, and I was stunned to see people standing in line today to get into this event. The event is free, but to me it generates noise pollution for its neighbors. During the week, the event runs until 9pm and on the weekends this sound continues to 10pm. I have had a full week of intense noise starting at 7:30am with drilling and construction until 9pm, when the Kennedy Center finally goes dark and shuts down the skateboarding event. 

By day it was grey and raining, yet by tonight we were treated to a Mattie Miracle sky. The sun was reflecting brilliantly on the Potomac River. 
















September 11, 2015

Friday, September 11, 2015

Friday, September 11, 2015

Tonight's picture was taken on October 2, 2008. We took Mattie to New York City, to be seen by a doctor at Memorial Sloan Kettering. Along our journey, we tried to do some fun and memorable activities with Mattie. Such as going to FAO Schwarz! The funny part is I had never been to this store's location before, but like so many things.... Mattie exposed me to so many new experiences! 


Quote of the day: I may never be normal again. But this is my life now. I have to live it. ~ Manu Dhingra, 27, a securities broker who suffered burns over a third of his body but was released from the hospital October 2, 2001


Today marks the 14th anniversary of September 11. Some how this doesn't surprise me given my experiences with losing Mattie, but I have to say it was hard to find media coverage of the 9/11 ceremonies. The media seems to be intrigued with mile marker anniversaries.... 5, 10, 15, etc. Fourteen, I guess wasn't a meaningful number to them. Which of course is problematic, because as you will hear in the videos of the family members of victims...... THEY NEVER FORGET and it is painful to visit these memorial sites.  

I found three videos for the blog tonight to honor and remember the tragedies in New York, Washington, DC and Shanksville, PA, in which over 3,000 American lives were taken that day. But I have to tell you it took me over an hour to find them! They did not just pop up with a Google search. Yet as I know from experiencing a traumatic loss, family members need support and they need to have outlets to remember. Also they need to know that the rest of us haven't forgotten them or their loved one who perished that horrible day. Grief is always about remembering and I hope if you are reading this blog tonight, you reflect on some of these facts:


  • More than 2,700 people were killed at the Trade Towers
  • 184 people were killed at the Pentagon
  • 40 people were killed in a field in Shanksville, PA. Heros who diverted a plane targeted for the US Capitol!
  • 21 first responders at Ground Zero (NY) died from working for days and months at World Trade Site (died from cancer and other diseases)
  • There are 15,000 people registered in the World Trade Center Health Program, of whom over 1000 of them have cases of cancer


September 11, 2015 Videos:













New York: http://abc7news.com/news/families-of-sept-11-victims-mark-14th-anniversary/979730/

Washington, DC: http://www.fox5dc.com/news/18869342-story

Shanksville, PA: http://www.wtae.com/news/observance-to-be-held-today-at-the-flight-93-memorial/35216762

September 10, 2015

Thursday, September 10, 2015

Thursday, September 10, 2015

Tonight's picture was taken on August 10, 2009. This was five days after we found out that Mattie's cancer spread throughout his body. I typically try to post happy photos of Mattie, and usually only snapped such photos along our journey. But occasionally we did take photos of our reality. A reality which wasn't pretty and I did try to spare our care community from seeing while writing the blog. I may have written about it at the time, but actually seeing a depressed child in a photograph is quite another story. Mattie was always wise beyond his years and he was very in tune to his whole cancer battle. In fact, he knew before anyone, INCLUDING his DOCTORS, that he was dying. Which is a painful reality to accept at any age, much less at 7. 


Quote of the day: Grief can't be shared. Everyone carries it alone, his own burden, his own way.Anne Morrow Lindbergh




I am proud to share Day Four of Orange Tie week! To me this tie captures the fun, creativity, and spirit of Mattie. 















This afternoon, Peter and I went to our second funeral in six days. Two weeks ago one of our neighbors died and one of her three sons who lived with her is friends with me. This friend needed support and therefore we rose to the occasion to attend the funeral and then sat with him for hours tonight talking about all sorts of things. The irony is he at first did not want to talk but given that we know the language of grief, I think it surprised him how he opened up. As the hours went on, you could see him being transformed from someone shell shocked to someone who felt comfortable because he knew he was with people who understood. I chalk it up to yet another skill my son taught me. I maybe a mental health professional, but learning about illness, grief and loss so personally was something I learned first hand through my son. 

The funeral was held at the same church Mattie was baptized at in July of 2002. In fact, Peter and I haven't been back to that church since Mattie died. So that was another surreal experience. The funeral we went to on Saturday was at the church Mattie's funeral was held at, and today's church was where Mattie was baptized. In a way, I found today's mass very moving, and I can safely say I rarely feel that way about attending church anymore. The monsignor who led the mass was real and very in tune with the rawness of emotion before him. After all the sons of his woman were in deep pain. But it was how he phrased his homily that caught the attention of both Peter and I, because in the midst of great sadness he inspired hope. Which isn't an easy thing to do at a funeral.  

September 9, 2015

Wednesday, September 9, 2015

Wednesday, September 9, 2015

Tonight's picture was taken on August 12, 2009. Even though Mattie's cancer had spread throughout his major organs and he was weak, he still had the where with all to find humor and entertainment in his situation. As you can see he grabbed his plastic claw and was giving me direction. 


Quote of the day: When our children die, we drop them into the unknown, shuddering with fear. We know that they go out from us, and we stand, and pity, and wonder. ~ Henry Ward Beecher


As you can see Orange Tie Week is going strong! This is Day three's photo! Tim told me he thought Mattie would appreciate this tie because of the palm trees on it. Mattie loved going on vacation and traveling. I will never forget we took a trip one December to Florida. After a major rain storm, Mattie wanted to go outside for a walk. Along our walk we came across a LARGE palm frond that fell on the ground. Mattie insisted we pick this HUGE thing up, take a photo with it and bring it back to our hotel room! Classic Mattie, he loved collecting items along our walks. 






This construction project outside our home CONTINUES! I feel like I live in a disaster zone. Between the pounding, drilling, lack of privacy and the dust that is everywhere, I am about to lose it. We painted our deck in the spring, which was a total joke since now it looks like a mess. This just wasn't the best of weeks for them to be doing this project, and with Mattie's sixth anniversary yesterday I just couldn't be myself. I am counting the days until Friday, when this is supposed to come to an end. 


In the midst of pounding, drilling, and intense noise, I had a conference call with a woman who is doing some research for another Foundation. She was reaching out to me because Mattie Miracle is considered a pioneer and leader in the realm of psychosocial care. So she had questions for me and wanted to learn more about what we do. As I was talking to her she made a comment that has stuck with me all day. By training this woman is a life coach and helps people get their lives on track, and to find happiness. She told me that she has been talking to many other family members who started foundations and organizations and the one thing she notices is they all talk and focus on one thing..... the child they lost to cancer. She said that I do not talk like this, that I think more globally. In terms of what I learned from Mattie's battle and his loss, inspires me to help others on a grander scale. She made the comment that this is unusual and the sign of a true leader. She said some other lovely things about my growth and introspection, but overall I told her I wished I taped her conversation because such profound feedback from a stranger made me pause. Needless to say after that call, I shared that comment with Peter, because he is just as much a part of this grand vision.

What this conversation also showed me today is I have my strengths and Peter has his. We communicate differently and that I believe is what makes the Foundation effective. I can talk on an emotional and mental health level, and Peter is great talking to people about the business, strategy and overall development and future directions of the Foundation and its projects. Both forms of communication are necessary for progress and success.  

September 8, 2015

Tuesday, September 8, 2015

Tuesday, September 8, 2015 -- Mattie died 313 weeks ago today. Today marks the 6th year anniversary of Mattie's death. 

Tonight's picture was taken on August 5, 2009. The day we learned that Mattie's cancer became terminal. On that day we went from actively battling cancer to end of life care and managing even more intense pain and suffering. Mattie was pictured in front of a statue of an elephant. This elephant is an on-going art therapy project at Georgetown and why Mattie loved this elephant is because one of his nurses, Kathleen, created a piece of pottery for it which is permanently cemented onto the elephant. The elephant isn't far from the Hospital's rose garden, which is a place we all escaped to whenever we were allowed out of the hospital and the weather was decent! 


Quote of the day: There's no tragedy in life like the death of a child. Things never get back to the way they were. ~ Dwight D. Eisenhower


In the midst of contending with our own grief and loss today, which is only heightened on anniversary dates, I received a call from one of Mattie's oncologists at Georgetown. She wanted me to know that a couple just lost their only child to osteosarcoma TODAY. A child who shares Mattie's anniversary, seemed too surreal to me and with the same type of cancer. Mattie's doctor was reaching out to me to see if I would consider supporting this family through their first year. 

Peter and I both posted Mattie tributes on Facebook and Twitter today (Vicki's facebook page: https://www.facebook.com/profile.php?id=668118467, Peter's facebook page: https://www.facebook.com/profile.php?id=100009631901344&fref=ts). We have received hundreds of responses from people and several even shared our postings with their networks, told us their experiences with childhood cancer, and many of our friends either dressed in orange or even switched their profile photo on Facebook to reflect and honor Mattie. It was deeply moving to see this outcry of support! 

However, what struck me immediately, was those who have also lost a child to cancer ALL ADMITTED that the first year after the death is tough, but it gets worse NOT better. I absolutely agree! As I always say, the first year you are so in shock and numb that in a way it protects you from emotionally feeling the blow you just suffered. The first year is about physical survival. Learning how to live in the world, breathe, get out of bed, and take care of your physical needs. However, by the second year, the reality of the loss truly hits you and it ISN'T pretty when it does. It seems like at that point that your life is caving inward and there is no escaping the despair, isolation, and anxiety of losing a child. The problem with this is right about the second year is when one's support community usually dwindles, which is a recipe for disaster. Because it is at that point, a parent can feel abandoned, confused, and truly disengaged from society. Surviving the loss of a child is a lifetime endeavor, which requires a great deal of emotional support. Support which is hard to find in the world one used to exist in. 

I could naturally write and talk about this until the cows come home, but hearing that others around me understand this, have experienced this, and also struggle is very helpful. Because with grief, our society can make you feel as if YOU ARE THE ONE WITH THE PROBLEM. 

As I reflect on the parents who just lost their only daughter today, I remember that moment in time. When we arrived at Georgetown as 3, and after Mattie died, we left as 2. It was a horrible feeling, and yet when you support parents through the first year, people are fragile and sharing the big picture.... that grief is monumental and pervasive and it lasts over the course of your lifetime isn't helpful. This is where sharing one's knowledge is not always helpful, it requires to really sit in the moment with that family and follow their lead and support those needs. 


In honor of Mattie and his incredible battle he endured, even in death, I wanted to share an excerpt from the September 8, 2009 blog:

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Mattie had a VERY harrowing night. From 2am on, Mattie was having trouble breathing, and appeared to be in intense pain. It was the most intense five hours of our lives, and the sights and sounds we observed during this time were horrific, ones I don't wish on anyone else. I can still see Mattie's sweet face writhing in pain, gasping for breath, and making a horrible congested sound, which if I don't ever hear this again in my lifetime, that would be too soon! Dr. Shad called this chest congestion, the "Death Rattle." That is an accurate description because when you hear it, you know death is pending. In all reality I found these five hours frightening, because we just did not know how the death process would unfold.

We were blessed to have Sarah Marshall, one of Mattie's outstanding HEM/ONC nurses, working with us last night. Typically a HEM/ONC nurse is assigned three patients during a given shift. Sarah Marshall was proactive and did everything that was humanly possible to make sure that Mattie was relatively pain free, which WASN'T easy. Mattie was on IV dilaudid, dilaudid boluses by hand, a Versed continuous drip, as well as boluses of Versed. In addition, Mattie was receiving albuterol through an inhaler, which helped to keep his airways open.

By 6:15am, Mattie was receiving very high dosages of pain medicine, however his pain wasn't subsiding, and frankly we were getting concerned with how we could manage his very over taxed heart and body. Dr. Shad prescribed propofol at that point to put Mattie in a twilight sleep. But propofol is known to slow down the heart rate, and this assisted in giving Mattie relief and helped to stop prolong the agony! Mattie died within one hour of the propofol infusion. While Mattie was in pain, I could see he would try to sit up and talk with Peter and I. At one point, he mentioned to us that"he was going to die." So we concurred with him and this provided some leeway to talk about our fears and hopes for him. We told him we loved him and that it was okay to let go. Periodically Mattie would sit up and try to open his eyes, and one time he looked at me and said someone else was in the room with us, by the door. Well no one earthly was in the room with us, but we knew Mattie's death was near. Here is the thing though, seeing him suffer in pain, and listening to this "death rattle" for hours on end, made the option of death much more peaceful and appealing. My heart was aching over the pain Mattie was in. Dr. Shad assures me that Mattie was always comfortable, and the "death rattle" is much harder for the caregiver to listen to for hours.

As Dr. Shad said to me today, "Mattie fought death." Mattie just did not want to die. Dr. Shad feels that this was because he did not want to leave Peter and I behind. After all the three of us thought we would be together for always. Careful when you assume things!!! Dr. Shad told me that she has been an oncologist for 25 years and in all her career she has only had to use propofol on one other child patient! She said Mattie was her second, and Mattie needed it because he was resisting death. I actually found her statement very empowering, because if Mattie was willing to be that congested for such a significant period of time then he really must love us dearly.

Once on propofol, Mattie's body started to relax, and I decided to lie down next to him on his bed, as we were awaiting death. I wasn't sure what death was going to look like, but slowly one by one his respiratory rate went to zero, his pulse oximeter went to zero, and his heart rate also went to zero. Hearing all these values flat line was another sound I won't forget any time soon. But by that point Mattie was in my arms. The nurses and doctors gave us about an hour alone with Mattie after he died, to say good-bye. This was a very touching and tearful hour. How do you say good-bye to your child? Both Peter and I know on some level that Mattie has died today, but on the other hand, we are having intense trouble believing this. As Debbi said today, Mattie's face looked like he was smiling and in peace. Thank God because the five hour ordeal was something I am trying to forget. 

Mattie died at 7:15am, at which point we had some private time with Mattie. However, we were then visited by over 20 Georgetown Hospital employees. Jenny, Jessie, and Linda bought four stepping stone kits and we all worked around Mattie and did a stone for each foot and each hand. This is something I always wanted to do, and I am happy to have these cherished gifts that will always remind me of Mattie. I appreciate Tricia, Debbi, and Katie's help, because as Peter and I were pushing Mattie's hands and feet into the cement like substance, they were cleaning the substance off of Mattie. It was an amazing experience that occurred today, because in Mattie's postage stamp sized room, many employees came by to share their fond stories of Mattie with us. It was touching to see and hear how much Mattie has touched people's lives. My parents were so happy to be able to meet in person many of the people I have been writing about on the blog. In addition, Brandon, Mattie's big buddy, also visited. I could tell that Brandon was very upset to lose Mattie, and I told Brandon that Mattie loved him and considered him a good friend.

Once all the visits were over, Peter and I had the last chance to say good-bye to Mattie before preparing him to go to the hospital morgue. Lovely, no?! Saying good-bye to that beautiful face, those cute cheeks and hands was down right impossible. There are times the true reality hits me and I don't know how we will go on. Literally!

Tricia, Debbi, and Katie then gave Mattie a bath, and as unpleasant as this sounds, they had to place Mattie's body in a body bag and transport it to another floor in the hospital. I removed myself from the room, because I did not want to see the body bag. My precious son landing up in a body bag was a little hard to take. I sat outside with Dr. Shad and Linda, and Peter remained to help with the process. Mattie's "big brother" Jey came up to see us and also stayed to help transport Mattie to the morgue. He said no one else could do it, it was his responsibility today, because he loves Mattie and wants to give him a safe drive on is final destination within the hospital.

Saying good-bye to Georgetown today made me sad. I know we are always invited to C52, but it isn't the same. The nurses were clearly affected by Mattie's death and in many ways I was surrounded by this amazing community that we have gotten to know over 13 months of hospitalization. Jey also told us a funny story. Jey could picture Mattie up in heaven and arguing with God about his wings. Jey said Mattie would WIN about how large they would be!

We arrived at the hospital last Thursday with three of us, but today we only came home with two. How I miss the noise, sights, and directions given by Mattie, instead what I have floating around in my head are the sounds of hospital monitors. When we arrived home, I saw Speedy Red and almost lost it. In all reality being around Mattie's things bring about great sadness.

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As our faithful readers know, our friend Tim started an orange tie week tradition around Mattie's anniversary in 2012. Now four years later, Tim carries on the tradition. Here is tie two for the week! 












Our friends Mary and Mike also dressed in orange today and sent us the photo! Mary changed her profile photo on Facebook to THIS PICTURE!











My childhood friend, Julie, sent me a photo of her orange wristband. A new addition to her wardrobe in honor of Mattie! 









Our friend Sharon sent us a selfie of herself in orange! 




















My long time friend Mary Ann, sent me this beautiful rose from "Margaret's rose bush" today. This bush is near her house and we both call it the "Margaret bush" because we both knew my friend Margaret loved roses and when Margaret died, Mary Ann started this tradition of keeping me posted about how this bush is doing through the seasons. 






We visited Georgetown University Hospital today to see Mattie's memorial stone. This stone was created for us by Tim, the same man who started the orange tie tradition. I visit this stone every anniversary date. 








While we were visiting the stone, we were surrounded by this monarch butterfly. This butterfly was huge and literally kept floating by use, almost in a circle. It was noticeable and to me it was a sign from Mattie. He was with us today. 







After visiting the stone, we journeyed to the Hospital's rose garden. The bench on the right is particularly of importance to me. Each time I escaped the hospital for a few minutes, this is where I came. We also took Mattie here to look at the fountain and admire the roses. In fact the day that Mattie's cancer diagnosis turned to terminal, I learned about it in this rose garden, with Mattie sitting burrowed in my lap.


This is the art therapy elephant I described above. Mattie was pictured in front of it! The tiles on this elephant constantly revolve to reflect new insights and art work. 



However, Mattie's monkey still remains part of the elephant, even after all these years. This monkey was created by Kathleen, one of Mattie's HEM/ONC nurses. Kathleen wrote on this piece of pottery.... I wish for a Mattie Miracle, Love Kathleen!

Mattie always loved this tile, and the reason Kathleen chose a monkey is because she used to call Mattie her "monkey boy." Why? Mattie had a left leg, the only limb not operated on and cancer free, that was mischievous and acted like an arm with a hand and fingers. Any case, Mattie's left leg was nickname "curious George," which of course is a monkey in a story book. So this is the origin of the title, Monkey Boy! I did not think this monkey would still be on display, but low and behold we found it today! 

September 7, 2015

Monday, September 7, 2015

Monday, September 7, 2015

Tonight's picture was taken on September 1, 2009. Seven days before Mattie died. Mattie was absolutely miserable and in terrible pain. As you can see he had a pain pump (black box) attached to him. While we were in clinic that day, Mattie's art therapist, Jenny, tried her best to engage Mattie and keep him occupied. She gave him this remote controlled dinosaur, which he had just about enough energy to operate.


Quote of the day: The death of a baby is like a stone cast into the stillness of a quiet pool; the concentric ripples of despair sweep out in all directions, affecting many, many people. ~ John DeFrain



Since 2012, our friend Tim honors the memory of Mattie by wearing a different orange tie each day during the week of Mattie's anniversary. Tomorrow Mattie will be gone from our lives for six years. Now four years after the tradition started, Tim's orange tie week is still going strong. Tim sent me this photo of him in his orange tie for today! Naturally orange is the official color of Mattie Miracle, but we selected this color because it was one of Mattie's favorite colors. 

Peter and I appreciate Tim's kindness and thoughtfulness. Keep in mind that Tim never met Mattie. He has only heard about Mattie from us, the blog, and all of Mattie's caregivers at Georgetown University Hospital. We met Tim years ago, as he was our philanthropy contact at Georgetown Hospital. Tim took it upon himself to get to know Mattie's story and learn about our experiences. There are many of our blog followers who have fallen in love with Mattie through the years, without ever meeting him. Tim is just such a friend. 


As we are on the eve of Mattie's 6th anniversary, I thought it would be meaningful to post an excerpt from the blog on September 7, 2009 --- the day before Mattie died

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Mattie had a very difficult start to the day. His blood pressure has been dropping and is dangerously low, and he had a coughing fit, which left him gagging and unable to catch his breath. He was deathly scared, and when Dr. Shad and Kathleen (Mattie's outstanding HEM/ONC nurse) saw him, they mobilized into action. In reality what happened next moved so fast, it was almost a blur. Mattie was in minutes being pumped up with pain medications and Versed (for anxiety). Now that I can reflect on the morning, I am so thankful we are in the hospital. Because Mattie couldn't possibly be cared for humanely at home based on the symptoms he is presenting. It is ironic that Mattie seemed to know this, and had a better feeling for his condition and his decline than Peter and I. Once Mattie received all this medication, he asked if I could snuggle with him, which I happily did. However, Mattie is being kept in a comfortable state, so therefore he really isn't talking and spends a lot of time sleeping. The Mattie we knew is NO longer!

Peter and I spent a great deal of time today monitoring Mattie and also talking with him. In fact, when everyone was visiting, we had solemn moments, but also moments of laughter. Laughter because Mattie was a very humorous fellow! Kathleen told me that the nurses love Mattie, but they also love us. That Mattie has left a legacy, and his love will always live on within us. Mattie did not go to school this past year, but in a way he went through the hardest school of all. The school of cancer, which shows you the most vulnerable and raw sides of life. In fact, it has left me so raw, that I emotionally am not the same person anymore.

Mattie's nurses all came in tonight at their shift change to kiss and say good-bye to Mattie! It was very touching. Kathleen told me that even though Mattie isn't awake, he can hear us, and that he worries about us and is holding on because he knows we do not know how to say good-bye to him. So tonight, Peter and I mustered the energy to talk with Mattie together. We told him we loved him, were proud of him, that he did a great job fighting the cancer, but now he is in control and can decide when he has had enough and wants to rest. That we will be okay, and that we will always, always love him. We told him that we couldn't have asked for a better son, and that he was going to a place where he would be at peace, able to run and play, and meet up with family members and friends who love him but whom he has never met. My sign off tonight, as it always is to Mattie was, "Una Moon loves Mooshi Moo." Mattie coined the nickname, Una Moon for me, and he is my Mooshi Moo.

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For the past several months, our neighborhood has been inundated with graffiti. Some of it I can see from our home and others of which we can drive by it and see it. 

This weekend, I couldn't take it ONE MORE MINUTE. I am not one of those people who finds graffiti beautiful or artistic. If you want to create beauty, go get a canvas or a piece of paper. 


So Peter took photos of the areas in question and we submitted a formal request to DC to come clean these public spaces. The first zone is shown above. You may not be able to see it, but the graffiti is all over the walls behind the road signs and fence. You may not think one can notice this, but the wall is adjacent to a park. Which is supposed to be a beautiful and restful space. The second horrible sight is right near the State Department. Graffiti has taken over this wall, and the building above it is the State Department. I am not sure why the State Department has allowed this to continue without addressing it, but I have had it. It disgusts me and it has to go!




We went on a four mile walk around DC today. That was really a labor given the intense heat and sun! We meandered through the FDR memorial. Which is one of the nicest and well laid on memorials in the city. 

The FDR Memorial Commission selected landscape architect Lawrence Halprin to design the memorial in 1974.  The result, with its shade trees, waterfalls, and quiet alcoves, feels more like a secluded garden than a traditional memorial. Walls of red South Dakota granite define the memorial’s outdoor rooms and the passageways connecting them. Waterfalls, quiet pools of water, and Roosevelt’s own words, beautifully incised into the granite walls by master carver John Benson, create a mood of quiet reflection.


The national memorial dedicated to Franklin Delano Roosevelt, the 32nd president of the United States, lies about half way between the Lincoln Memorial and the Thomas Jefferson Memorial in Washington, DC.  Its four open-air rooms represent each of the four terms of office to which he was elected.  A meandering pathway leads past waterfalls, bronze sculptures, and FDR’s own powerful words carved on the granite walls.  The memorial honors the memory of one of America’s great leaders and the optimism and courage that he shared with his fellow citizens through the ordeals of the Great Depression and World War II.  A statue of Roosevelt sitting in a wheelchair greets visitors and reminds them of the man who refused to let disability stop him.  

Halprin carefully designed the FDR Memorial to be accessible for people with all kinds of disabilities, but the original plans did not include this sculpture.  Spokespersons for the disabled protested, arguing that showing the truth of FDR’s paralysis, something that he himself rarely allowed, would increase awareness and set an inspiring example for others who struggled with disability. Congress agreed. 


The Breadline represents the despair of the Great Depression.  









This waterfall crashes over scattered boulders, suggesting the destruction and violence of World War II, which dominated Roosevelt’s third term in office. 





Neil Estern created the statues of Roosevelt and his beloved dog, Fala, calmly presiding over the chaos surrounding them.  Franklin D. Roosevelt’s hopes for the future are engraved on the wall next to his statue................... 








"We have faith that future generations will know that here, in the middle of the twentieth century, there came a time when men of good will found a way to unite, and produce, and fight to destroy the forces of ignorance, and intolerance, and slavery, and war."

Neil Estern’s statue of Eleanor Roosevelt honors her contributions as first lady and as one of the early delegates representing the United States at the newly formed United Nations. 

















Even the steps at the FDR memorial tell a story. In fact they give the visitor a brief but historical overview of FDR's life and his four terms in office.  









September 6, 2015

Sunday, September 6, 2015

Sunday, September 6, 2015

Tonight's picture was taken in September of 2008. We took Mattie to New York City to be seen by an oncologist at Memorial Sloan Kettering. In order to start an experimental immunotherapy treatment for osteosarcoma, he had to be evaluated and start the process in New York. That afternoon we took Mattie for a tour of the city... in which he went to the Natural History Museum and FAO Schwartz. As you can see from Mattie's face, he was far from happy. 


Quote of the day: Grief fills the room up of my absent child, Lies in his bed, walks up and down with me, Puts on his pretty look, repeats his words, Remembers me of his gracious parts, Stuffs out his vacant garments with his form. ~ William Shakespeare


Peter and I went to Mattie's school today to visit his memorial tree. My faithful readers will recognize this photo which I took on Friday, when I did a drive by of the tree. This sight truly disturbed me because I wasn't expecting to see construction material on top of the base of Mattie's tree. Needless to say, I reported this to the school, and when we went to visit the tree today, there was nothing surrounding it. All the items had been cleared away.  

So in essence this is my "before" photo of the tree. 






We brought with us tulip and crocus bulbs, topsoil, and mulch. Every Fall we plant bulbs around the base of the tree and mulch it to protect it. It makes this tree really stand out from the others on the property and during the spring when the bulbs bloom, you can't help but notice this tree. 

Not to mention that the tree is always decorated. Which catches the children's attention. 










In honor of Mattie's sixth anniversary this Tuesday, Peter and I went today to decorate the tree. Mattie's school starts on Tuesday, the day after Labor Day. Rather ironic, since six years ago, Mattie died on a Tuesday (the first day of school in 2009). Now six years later it is as if we are reliving that Tuesday all over again. 

Around the tree we tied plastic sunflowers (a very symbolic flower to me, since this is the flower our care community gave me throughout Mattie's battle, and therefore to me they represent support, compassion, and love), and golden color bows in honor of childhood cancer awareness month. 




In addition, we hung gold colored spiders on the tree. Like the one you see here! Mattie loved all sorts of creepy crawling things, and when we saw these spiders at the craft store, we knew this would be a perfect addition to the tree this September.