Friday, August 10, 2018

Friday, August 10, 2018

Tonight's picture was taken on August 8, 2009. I snapped several photos that day, as Mattie was surprised with a wonderful ride on vehicle. Something he always wanted. In fact, Mattie named his car "Speedy Red."  I will never forget how I went with Peter to Toys R Us, picked up this vehicle, dragged it upstairs, and then watched Peter assemble it. Despite how sick and in pain Mattie was, he was very eager to test drive Speedy Red. Literally he sat in his wheelchair for over an hour as he watched the assembly process and provided commentary!



Quote of the day: If the world seems cold to you, kindle fires to warm it. ~ Lucy Larcom



What constantly amazes me about Los Angeles is the terrible traffic problem that exists here! Just when I don't think it could get worse, it does. There is constant congestion on the freeways at all hours of the day. Gone are the typical times for rush hours. We drove to Pasadena today as my parent's were getting their car serviced. In theory Pasadena is 11 miles away from where my parents live, but I can assure you it did not take 11 minutes to get to our destination. I feel sorry for anyone who is intimated to drive a freeway, because it is the major way of traversing this city. 

In between doing chores today, we met up with a friend of my parents for lunch. I have known this person since I was in high school here in Los Angeles. It is fascinating in a way to grow up with a person and as I age, I view him in a different light. Now I am able to take into account a host of different factors that can impact his life and perspective. What I do know is my work with Mattie Miracle enables me to interact with many people. In the process it has given me the skills to get people to open up about themselves, their own life, and as a result I have a better understanding for the person before me. Does this skill come with age? Did I always have it? Or is it something that evolved after Mattie died? My answer would be a combination of all three. 

Childhood cancer has taught me in a very raw way that everyone has their own story, issues, and in some cases heartache. All of which can effect how people interact with others and the world around them. I try to take all of this into account. What I can say is childhood cancer and losing Mattie has forever changed me, and I suppose I now look more than ever to understanding someone else's sadness and pain. When other people walk away from these sensitive issues, I walk towards. I wasn't necessarily like this before Mattie was diagnosed, but this is one of the many ways that reminds me that Mattie's cancer journey is not over for me. His journey continues on because childhood cancer is a family disease. To deny that Peter and I aren't still impacted would be naive. 

Thursday, August 9, 2018

Thursday, August 9, 2018

Tonight's picture was taken on August 8, 2009. Three days after we learned about Mattie's terminal diagnosis. One of Mattie's wishes was to get a ride-on vehicle. This was actually something Mattie always wanted, even when he was well. However, when Mattie was healthy, my response was always NO. This toy vehicle was costly and I figured it would be a novelty that Mattie would only appreciate for a short time. My tune changed when we learned that Mattie was going to die. My parents bought this vehicle for Mattie and Peter and I went to the store to pick it out and brought it home. What you see in this photo was Mattie's surprise as Peter wheeled him out to the deck to see the ride on vehicle in its box. Mattie greeted the box with a big smile. 


Quote of the day: We can do no great things – only small things with great love. ~  Mother Teresa



Peter sent me a link to an article today entitled, Interventions crucial to offset negative impact of psychosocial symptoms on childhood cancer survivors, which was published on-line in Hem/Onc Today. When Peter sent it to me, he encouraged me to read it because he said something was missing! I knew exactly what he was talking about even before reading the article. What was missing??? Any mention of the Psychosocial Standards of Care. We are on a mission to bring these Standards to the attention of all researchers. Ironically what I find when I contact authors about their oversight, they do admit to knowing about the Standards. Interesting! So why not mention them in the first place, especially when charging the childhood cancer community to advocate and demand a standard of care. 

In any case, the article highlighted the psychosocial issues childhood cancer survivors face. As I always say, the psychosocial issues DO NOT end when the treatment does and I strongly believe this is the case for patients and their families. Here are some highlights from the article:

1. There are approximately 420,000 survivors of childhood cancer living in the United States. Although a majority of survivors are deemed psychologically healthy, multiple factors can affect quality of life and can increase risk for difficulties.
2. Studies have found that survivors of childhood cancer are likely to develop mental health symptoms including anxiety, depression and suicidal thoughts. Several factors, including low income, lower education and unmarried status, could also contribute to poor physical and mental health.
3. These adverse outcomes are more prevalent among survivors who had disease or treatment involving the central nervous system, this includes brain tumor survivors and survivors who received intrathecal or high-dose IV chemotherapies, such as methotrexate.
4. Late effects have been found to be associated with psychological adjustment. Survivors of CNS tumors are at high risk for poor adjustment related to CNS-directed therapy. In addition, survivors of bone tumors are at risk for psychosocial problems linked to physical immobility and pain on adjustment.
5. If not appropriately treated, psychological symptoms in childhood and adolescence can place survivors at risk for continued or worsened mental health symptoms and engagement in risky health behaviors later in life.

When I wrote to the author of this article today, I pointed out that she mentioned..... "For psychological disorders such as anxiety and depression, standard of care often includes psychotherapy, such as cognitive behavioral therapy with a licensed professional, and/or medication management under the supervision of a physician." I was happy that a standard of care was mentioned and wanted to alert her that such Standards already exist. Specifically Standard 3 addresses the necessary psychosocial followup that is needed for survivors in order to enhance their quality of life.

I felt it was important to bring these Standards to her attention and I await her response! However, what did catch my eye was her mention that children who receive high-dose IV chemotherapies, such as methotrexate, can have cognitive effects. Cognitive effects may look like... an inability to concentrate, to focus, and to remember information. All of which impact the ability to learn. 

Why I am mentioning this is because I have argued with other researchers about the negative cognitive effects on all children treated for cancer, not just children treated for cancers of the central nervous system (brain cancer). So I was happy this researcher highlighted this reality as well as the reality that children treated for bone cancers are at risk for psychosocial problems. Though Mattie never made it to survivorship, I always saw how cancer treatment effected him with constant pain and the inability to walk and be physically independent. Bone cancer treatment is horrific and it has real psychosocial consequences, consequences that are RARELY mentioned by our healthcare community. So when they are mentioned, it is noteworthy!

Wednesday, August 8, 2018

Wednesday, August 8, 2018

Tonight's picture was taken on August 29, 2009. Mattie was at the outpatient clinic and as you can see he was surrounded by his art therapists and child life specialist. But check out what Mattie was doing! He lifted his leg to cover his face. This was his way of saying to me.... NO photos! Enough!!! Keep in mind that Mattie died about 10 days after this photo was taken. 



Quote of the day: Be not simply good; be good for something. ~ Henry David Thoreau

Last night, I went with my parents and two of their friends to see a Joe Piscopo show. I have a feeling many of you are saying, wow what is he up to now? He is 67 years old and FULL of energy. The question is what can't he do? Clearly he is a comedian, and best known for his work in the 1980's on Saturday Night Live. However, he is much more than just a comedian. He can sing. Sing like Frank Sinatra, to be specific, can play multiple instruments (piano, drums, flute, and saxophone) and can do wonderful impressions. His impressions of people had all of use laughing hysterically. 

Joe Piscopo was on the local Los Angeles news on Tuesday, before his show. On the link below, you can see his impression of Frank Sinatra which he used to do on Saturday Night Live. I would have to say, he has perfected his technique over the years and sounds and looks more like Sinatra than he did in the 1980's. He has Sinatra's mannerisms down to a t! 
https://www.youtube.com/watch?v=XRUOXeeJwgk

One thing is clear, he loves to perform. You can see how energized he gets when he receives feedback and applause. He even featured two of his sons in the show. In fact, Joe Piscopo was married twice and has a total of four children. 

In addition to his great performance, he was surrounded by an amazing orchestra. All these young individuals could play big band songs like they were second nature to them. 

Meanwhile, my doggie photo of the day is this one! Sunny has taken over my side of the bed and was watching TV with Peter tonight!

Tuesday, August 7, 2018

Tuesday, August 7, 2018 -- Mattie died 464 weeks ago today.

Tonight's picture was taken on August 9, 2009. As you can see Mattie was home, but things were not going well. He was on oxygen, IV's, a pain pump, and a host of other medications. It was almost too much to manage for Peter and me. Yet in between horrific moments, there were smiles. Peter engaged Mattie in intense Lego building and in all reality, Legos brought normalcy into our lives. I can't tell you how many Lego sets were built that year! All I know is that by the time Mattie died, we built every Lego kit on the market in 2008 and 2009. 


Quote of the day: Scientists have discovered that the small, brave act of cooperating with another person, of choosing trust over cynicism, generosity over selfishness, makes the brain light up with quiet joy. ~ Natalie Angier

My morning started at 4am. Sunny and Indie did not know what was going on, but one thing was for certain, Sunny was VERY anxious. The routine was all off and he wasn't happy about it. 

I had a 7:15am flight and given the way that airports are now, you need to allot a great deal of time to check bags and make it through security. As you can see, DC was overcast and HUMID today. 

The flight across the country was the smoothest I have ever experienced. Which was a blessing. I typically don't like flying but this five hour flight was actually peaceful. Nothing to disturb me and I even read an entire book. Which is unusual for me, since I now need complete silence to read. Another side effect from Mattie's cancer journey. 

This was a photo I took as I flew over Palm Springs.

These are the incredible foothills that you see as you fly into LA. 

Meanwhile, do you see the FedEx plane? It was landing with us. Quite the sight no? 

Even at 10:30am when I landed, it was broiling in LA. It is over 100 degrees now, and it feels like an oven. 

There are things I can help my parents with while I am here and I am making a list. However, not packing, moving boxes, and unpacking are major gifts. That was three very intense weeks in June and July, and when I look back at it, I don't know how I did it. It truly reminds me in a way of my days living in the hospital with Mattie. There is just no telling how far you can push the body and mind when pressed to do so.   

Monday, August 6, 2018

Monday, August 6, 2018

Tonight's picture was taken on August 6, 2009. The day after we learned that Mattie's cancer diagnosis was terminal. You maybe asking yourself..... what was happening in this photo? What was happening was Peter and I had met with the doctor to talk over the news about Mattie's diagnosis and how we could possibly manage the pain. While we were with the doctor, Mattie was playing at the art table. He made all sorts of things and had boat races with friends in the clinic sink. What you see here was Mattie looking at both of us after we returned from talking to the doctor. Mattie was not aware of the severity of his illness at that point and was looking at us to make a determination. I remember that moment like it were yesterday. As we clearly had to pull it together so that we did not scare Mattie after what we had just heard from the doctor. 


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

Given the content I posted on the blog yesterday, I did not feel like highlighting these butterfly photos. However, do you see the beautiful monarch butterfly outside our window?

The reason this is so noteworthy is that we never get butterflies visiting our balcony, only our deck. So this was a novel occurrence, but given that yesterday was an anniversary day of Mattie's terminal diagnosis, we felt that this butterfly was a visitation. 

A close up of this beauty. This butterfly stayed on our balcony for several minutes, just pausing on our aloe plant. If butterflies could carry messages, I believe this one did. Or at least I would like to think that!

Tomorrow, I head back to Los Angeles to visit my parents. Thankfully there will be no boxes to pack and move. However, the problem with geographic distance, is you do your best to get in as much time together as possible. As traveling by air anywhere these days is stressful and challenging. 

Sunday, August 5, 2018

Sunday, August 5, 2018


Tonight's picture was taken on August 5, 2009 -- the day we learned that Mattie's cancer metastasized throughout his body. Despite Mattie's intense pain, living without food for weeks, and awaiting scan results, Mattie still found it within him to smile for me and the camera. Just an amazing boy. 










Quote of the day: As someone who has lived the nightmare of losing a child, I know that the enormous hole left behind remains forever. ~Arthur Honegger


Today is a day never to be forgotten! After all how could we ever forget the day we learned that Mattie was going to die?

On August 5, 2009, we learned of Mattie's terminal cancer diagnosis. Mattie was six weeks off of chemotherapy and was emaciated. He was unable to eat or drink anything for weeks and was surviving only on IV fluids. In my heart of hearts I knew something was PHYSICALLY wrong with Mattie. Yet many of his doctors felt that Mattie was manipulating me and therefore he chose not to eat or drink. Meaning that Mattie had the start of an eating disorder and the issues were psychological. I will never forget my anger over this pronouncement, but yet continued to advocate for more testing.

On August 5th, Mattie underwent an ultrasound, followed by an abdominal CT scan. It was through this testing that doctors finally received the data they needed. Data, which I intuitively knew from observing Mattie and KNOWING Mattie. The scans confirmed that Mattie's cancer spread to his stomach, lungs, and liver. The doctors were stunned that disease progression happened so quickly. However, the one consistent thing about cancer that I have learned, is it isn't consistent. That medicine does NOT have all the answers, and most of all parents are a crucial part of the treatment team.

The photo you see above was taken by an elephant statue near the hospital's rose garden. While waiting for the news from the scans, Mattie and I sat together outside. As the rose garden was our escape from the daily smells, noises, and stresses of living in a hospital. It was in the rose garden that day that I felt Mattie understood that he was dying. He had this insight before we even received any test results. While in the garden, Mattie literally found a way to climb out of his wheelchair and onto my lap. While on my lap he wanted to hear about the day he was born. A tender story we loved to relive together. For those of you who wish to read it, I placed the message that was on display at Mattie's celebration of life below.

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This is a photo from Mattie's celebration of life on October 10, 2009. At the event were Mattie's artistic creations, photos, and the poster with text on the left hand side was my "Dearest Mattie" story.

My Dearest Mattie,

It is said that parents love their children right from the moment they are born. However, in your case, our love for you began as soon as we learned we were going to have a baby. In fact, right after seeing your sonogram picture, we felt like proud parents. We posted those pictures everywhere. We shared these pictures with practically anyone who would listen or showed interest, and each September when I taught prenatal development in my undergraduate human development class, out would come your sonogram pictures to illustrate my points. Even my students got a sneak peek at our baby, a baby who would have a profound and meaningful impact on not just his parents but also every community he touched. Daddy and I did not only love you, we FELL IN LOVE with you, and that love grew stronger with each day. Your energy, spirit, love for life, intellectual challenges, sense of humor, and loyalty to your friends and family were only some of the wonderful traits we always admired in you.

This video is a tribute to you and your wonderful, yet short life. It seems fitting as we celebrate you, and say good-bye to your physical presence that I share the story about how you entered the world. The story of your birth had to be one of your most favorite stories to hear, and I found during times when you were reflective, overly tired, or in need of hugs and tenderness, the request for this story arose. In fact, I remember on August 5th, the day we found out that your cancer metastasized everywhere, you and I were sitting in the hospital’s rose garden, and you requested the story. It was almost as if you knew this was going to be a bad day, so in essence we might as well brace ourselves, cuddle, and prepare for this together.

Here is the story I always shared with you. A story Daddy and I will never forget. On April 2, 2002, at 11pm, I decided to head to bed. I was anxiously awaiting your birth, and as your due date approached, I couldn’t help but wonder, when will “the baby” be coming? I was restless and uncomfortable, so while in bed, I began to watch television. I was having trouble concentrating on what I was hearing, mainly because you were kicking up a storm inside of me. At which point, the kicking became so intense, that I literally felt something pop. You clearly wanted OUT, and you were going to kick your way into the world on your terms. Naturally after feeling this pop, I looked down at my tummy, and when I jumped out of bed, I realized my water had broken. This only happens to 25% of moms, and in retrospect, I should have guessed that this was just the beginning of how different our lives were going to be together. I immediately called the doctor and told her what happened. She asked if I was in pain, which I wasn’t, and she instead told me to get a good night’s rest, because my baby was going to be born the following day. Well I can assure you after hearing this news, sleeping was the farthest thing from our minds.

So on April 3, 2002, Daddy and I headed to the hospital and we were admitted to the maternity unit at 8am. The labor process began, but it was a VERY slow process for me, and at times as you moved inside my tummy, Daddy could see your head pushing against my backbone. Needless to say Dr. Mike, the anesthesiologist, became my favorite doctor that day. The hours kept rolling by, and still there was NO sign of our baby! I was getting weaker, I developed an 102 fever, and by 11pm I really had no energy to give birth to you. In addition, to how I was feeling, your oxygen supply was getting cut off, and your chin was positioned in such a way that would make the birthing process almost impossible. So it was at that point that the doctor recommended an emergency c-section. Things began to happen very quickly around me. I was signing paperwork for surgery and Daddy was being transformed by putting on a bunny suit so he could enter the operating room.

I had never been in an operating room before in my life, but I really wasn’t concerned at that point about myself. I was solely focused upon you. I was wide-awake for the c-section, but unable to see the process, which as you know, was probably a good thing. Daddy on the other hand found the whole thing very exciting, and began to videotape and take pictures of the surgery. Literally a team of people surrounded me and I will never forget Dr. Mike, the anesthesiologist who sat by my side, and talked with me and did whatever he could to keep me pain free.

When you have a c-section, your arms are strapped to the operating table, so I couldn’t move, and directly over my head was what appeared to be a rope with a clamp that was holding open my abdominal cavity. Normally by this point I would have passed out, but when it came to you, I developed strength I never knew I had. As the doctor began cutting, and finally got to you, the first thing she said was, “what is this?” That is NOT what you typically hope to hear when having a c-section. The doctor let me know that I had a grapefruit sized tumor on my bladder, and my immediate thought was, did this affect the baby? The next thing I knew, I felt her tugging, and I heard the loudest cry ever. Now here is the part of the story that I know was always your FAVORITE! I would always try to replicate the sound I heard coming from you that day, a sound that will always remain in a parent’s ear. It was a very large WAAHHH! WAAHHH! At which point the doctor told us two things: first, that you were one of the most beautiful babies she had ever seen, and second, that you had quite a set of lungs on you! I concurred with both statements.

The doctor then brought you over to me, and she felt that I needed to be the first person to touch you. So despite my arms strapped to the table, my right hand miraculously reached out and grabbed your tiny, soft, and cute foot. It was a moment I will always cherish, a moment in which I will never forget, and a moment I am so happy you too enjoyed hearing about. Each time I retold the story I felt as if it further bonded us together, and I always enjoyed hearing your comments, thoughts, and reactions to your story.

Seeing you made Daddy very happy! Though he was worried about me, since after the c-section, I had to have bladder surgery to remove the tumor, we both agreed that Daddy should stay with you and accompany you to the nursery. It is there that Daddy got to see you cleaned up, he learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. Within an instant, Daddy became one of your fiercest protectors, and he cared for you for five days straight while we were in the hospital together. In fact, Daddy is the first person who changed your diaper, and though those were five very challenging days in the hospital, they were days that helped us form our strong family ties. Ties that were imperative and that we relied on for seven years of your life!

Your presence is so greatly missed. Nothing seems the same, is the same, looks, feels, or tastes the same without you in our lives. May you always know that Mommy and Daddy love you, cherish you, and that feeling will remain with us forever and always. Good-bye my Mooshi Moo angel and goodbye Daddy’s best buddy. With love from Una Moon and Daddy!

Saturday, August 4, 2018

Saturday, August 4, 2018

Tonight's picture was taken in August of 2009. At that point in time Mattie was very ill. He was in constant pain, having trouble breathing, and days later we learned of his terminal disease status. It always makes me pause and wonder.... how did Mattie manage all of this and yet find the strength and energy to smile, to play, and to interact with us? I have no answers! 

As you can see Mattie was surrounded by many of his things. Including a construction paper roach, who took a seat on our couch. In Mattie's hands, he was holding a huge fly swatter. A gag gift he received at his 7th birthday party. In this particular case, Mattie was swatting at me, so I couldn't move closer to the couch to remove the roach.  Mattie always got a chuckle at my reaction whenever a saw a bug.


Quote of the day: Never apologize for being sensitive or emotional. It’s a sign that you have a big heart, and that you aren’t afraid to let others see it. Showing your emotions is a sign of strength. ~ Brigitte Nicole


I believe the premise of this quote is exactly right... it takes a great deal of strength to express one's feelings. Mainly because revealing how you feel requires you to be vulnerable, to not have all the answers, and to be truthful. Which is why many people are hesitant to be sensitive or focus on emotional content. The issue with sensitivity presents itself in our everyday lives, but I would say it is heightened when dealing with the medical profession. 

Part of the problem with healthcare today is that doctors forget they are working with people. The other problem is they are balancing way too many patients and therefore do not have the time to dedicate to "small talk." Talk that actually provides more data about the presenting issue, but also sets the foundation for a healthy human connection. There is a great deal to be said about the healing power of this human connection. Knowing that you aren't alone and that you are being heard on your journey to physically feeling better. 

This week, Peter went for an annual health exam. As he was tired of seeing my doctor, I suggested he see someone else. Someone who I went to years ago, after I gave birth to Mattie. In fact, this doctor also cared for my parents whenever they were visiting from Los Angeles. So all three of us like him. When I caught up with Peter today about his overall experience with this doctor, I was thrilled to hear about the doctor's sensitivity. A quality I remembered about him years ago. 

In most medical intake forms, the question always arises as to whether you have children or not. I honestly do not know how to answer this question. Mainly because there isn't an appropriate answer choice on the form for us. But Peter answered the question factually.... he wrote in, yes but that Mattie died from osteosarcoma. I can't tell you how many doctors offices I have written about child loss on the form and in ALL cases, the doctor neither reviews the form or even mentions this loss. 

Which is why what happened in Peter's doctor visit this week caught my attention. The doctor actually sat down, got to know Peter, and they reviewed his forms together. All I can say is wow! Then the doctor took this a step further. When he saw Peter's response to whether he had children or not, the doctor  paused when he saw the answer. This doctor not only read the form but then processed it. He told Peter he was very sorry to hear about the loss of Mattie. Instead of saying something trite, his next words were..... How are you doing with this loss? 

I think that is a very interestingly worded question. Mainly because what it implies to me is the doctor realizes that the grief from child loss is not short term, but rather something you live with your entire life. In any case, this doctor and Peter develop an instant rapport and guess what? If the rapport is there and you feel like your doctor is listening to you, the more compliant a patient will be to come back for check ups and to call if not feeling well. Ironically, you want to know how I met this doctor to begin with? He was referred to me by Mattie's pediatrician, soon after Mattie was born. If I dig deep enough, everything we do is connected to Mattie in some way. 

Friday, August 3, 2018

Friday, August 3, 2018

Tonight's picture was taken in August of 2008. Mattie was a few weeks into treatment and as you can see was losing his hair. Ironically hair loss did not seem to scare or bother Mattie in the least. It was only people's reactions to him, seeing him without hair, that bothered him. 

That day Mattie was at the art table in clinic. A place he loved to be, if he had to be in clinic. His art therapists invited him to make hand prints and other creative things with clay. To this day, I have all of Mattie's hand prints and clay pieces from clinic. I am sure back then the thinking was to keep Mattie busy, but what may not have been understood was that every piece Mattie created became a part of his legacy. 


Quote of the day: Wishing good, merely, is a lukewarm charity; but doing good is divine. ~ James Lendall Basford


For the last month or so, Mattie Miracle has been working with a professional organization who is managing a grant we wish to fund. We chose to house our grant in a professional association, because it gives the grant more visibility nationally. Our primary purpose for this grant is to support researchers who wish to conduct implementation research on the Psychosocial Standards of Care. In addition, when the request for proposal went out, keep in mind that Mattie Miracle was going to fund only ONE grant at $10,000.

But then the grant applications came rolling in and given this is our first year, I am surprised that we received about 25 applications. Not just the amount of applications was surprising but the quality of the proposals, the attention to detail, and how serious each researcher took the application process. I was VERY pleased with what I read! What I did not count on however, was how the association's review committee was evaluating the proposals. Proposals which I thought were excellent were only getting lukewarm ratings from the scientists. So then I asked to specifically look at the criteria they were using to evaluate each application. It became very evident to me that how the committee was defining implementation research and how Mattie Miracle was defining it were two different things. 

It would have been easier for me to have kept quiet. As in this circle I am NOT a scientist or the expert on this research. However, I remind myself constantly that I have lived this experience and they have not. Of course having an educational background like mine helps as well. I debated for days about what to do about the committee's evaluation process. Then what pressed me to speak up was the simple fact that the committee was going to have a conference call to make a final decision. At that point I rationalized with myself that I work way too hard to raise Mattie Miracle funds, therefore, we have every right to vocalize our concerns and to spell out what we will and what we will not fund. 

I wrote my email to the committee the night before their conference call. I was very professional, but got my message across. Now moving forward to today. Today I had a call with the two review committee chairs. We talked about the review committee's decision. However, they mentioned to me how helpful my email was to the researchers because I explained Mattie Miracle's point of view on implementation research. As I told them we want to fund actionable research, research that will product something that can be potentially adopted around the country and used by psychosocial professionals at treatment sites. 

What started out as funding one grant, landed up with us funding 6. Not all at the $10k level though. I can't talk about this in more specifics because all applicants need to be notified about this decision first. But to make a long story short, as of today, Mattie Miracle will be funding 6 implementation research grants and will be spending $37,500 in total. The intention of the grants is very specific..... researchers have to be doing actionable research, they will need to present findings at a Mattie Miracle symposium (held at a national association conference), and try to publish their work (acknowledging Mattie Miracle as the funder). The wonderful part about this is we are the ONLY Foundation providing such implementation grants and this support has the capacity for moving forward our mission to implement the Standards at sites around the Country. In addition, awarding such grants will enable researchers, clinicians, and the community to understand Mattie Miracle's commitment and vision on the national level.  

As Peter reminded me today..... I work hard to raise funds. I am clear on Mattie Miracle's vision, and therefore am the right person to set the research vision for these grants. For a brief moment today I was happy and proud. That everything is tied beautifully together..... my hard work raising money, being able to personally direct this money to research, and knowing that this research will help carry out our mission which is ultimately to change the direction of cancer care for children in our country. 

Thursday, August 2, 2018

Thursday, August 2, 2018

Tonight's picture was taken in August of 2008. It was Mattie's first admission to the hospital, in order to start the first round of chemotherapy. I will never forget that first week. Honestly all three of us weren't sure what to expect, how to manage this, and our fears were impossible to quantify! However, it was in the early days of diagnosis that we met Linda, Mattie's child life specialist. Linda quickly became a vital part of our treatment team. As you can see, Linda set up a painting station in the middle of the PICU hallway, right outside Mattie's room. Linda knew exactly how to engage Mattie and in the process created for us moments of peace and happiness in between a lot of horror.


Quote of the day: We won't always know whose lives we touched and made better for our having cared, because actions sometimes have unforeseen ramifications. What's important is that you do care and you act. ~ Charlotte Lunsford 

Last night three of my friends took me to the Wharf in DC for dinner. The Wharf is a whole new mixed-use development in South West Washington, DC. It is amazing how this development has revitalized the waterfront. It is a far cry from the dilapidated restaurants that used to fill this area. 

We had a lovely waiter last night who walked us through the tapas menu and guided our experience quite well. We dined at Del Mar, which is part of a restaurant group that I like in DC. However, I would say this restaurant has some work to do to match the quality of its sister restaurants. The food was good, but sparse given the exorbitant prices. 

Meanwhile, check out my view today. Someone was NOT happy! As soon as Sunny heard the intense rain and then the thunder, he basically pushed me aside to get under my desk. He spent several hours on there while I was working. 

Wednesday, August 1, 2018

Wednesday, August 1, 2018

Tonight's picture was taken in July of 2009. Mattie was home between treatments and as you can see he wanted to help us paint the deck. In fact, Mattie was a good painter. Every spring he would help us paint the deck when he was well and the beauty of Mattie was he was a neat painter. As this photo illustrates, Mattie could no longer stand and three out of his four limbs were still recovering from limb salvaging surgery. So the left leg, known as "Curious George," pitched in that day to help with the deck. The irony was that Mattie's left leg worked as well as an arm and the foot was like a hand. Absolutely amazing how other body parts can compensate for those injured or not functioning. 


Quote of the day: I wish I had done everything on earth with you. ~ F. Scott Fitzgerald


Every July, the Hallmark Movie Channel plays Christmas movies. When they first started doing this years ago I thought it was odd. But now having watched them each summer, I get the point. Christmas is not just a day, but it evokes a feeling. It is that feeling that Hallmark tries to bring to its viewers during the hot days of summer.

Last night, we watched "Switched for Christmas." Peter is a good sport and does indeed watch these movies with me. Which I appreciate, as watching a movie alone isn't as fun. In any case, the movie's premise is about twins who decide to stitch lives for a few weeks. One of them has a high powered job, lives in the city, and isn't married and doesn't have children. Whereas the other woman is a teacher and a single mom of two living in the suburbs. The point of me telling you this is not necessarily to promote the movie, but to explain that even while watching a Hallmark movie about Christmas, we are impacted by the loss of Mattie. In fact, at one point, we paused the movie to talk. 

Christmas is much more than trees, decorations, parties, gifts, and cookies! All of these things are wonderful, but any major holiday tends to evoke memories. Memories that can be captured through listening to a song, watching a movie (like a Charlie Brown's Christmas), or eating certain foods and partaking in activities that were shared with family and friends over the years. These traditions land up swirling around in our heads and are a part of our life story. The thing is, once you are a parent, one of the gifts you provide your children are shared traditions and memories. As we see these Hallmark Christmas movies, it causes us to pause and once again visually see how different our lives are. How sad that we can't pass done family thoughts, traditions, and activities to Mattie, and of course make new one together. 

So taking this a step further, it is very apparent to me why bereaved parents are not exactly in love with the holidays. Even if the holidays are being conveyed in only a movie. Yet I love Hallmark movies. I suppose they could depress others because the scenes and sentiments portrayed in many of them are not realistic. Instead, what is captured is a more perfect world. A world where there is no traffic, where people talk and listen to each other, where valuing time and communication with others are tantamount, and well for me.... I always envy those wonderful cookies and baked goods that seem integrated into every Hallmark movie. In Hallmark land people bake, cook, share time together, and at the end of the day there is ALWAYS a happy ending. The running joke Peter has with me is I have to move into a Hallmark movie. Yes indeed, if only it was that easy.