Saturday, August 11, 2018

Saturday, August 11, 2018

Tonight's picture was taken on August 8, 2009. I took a series of photos that day. We literally bought this ride on vehicle that day, dragged it upstairs, and Mattie watched Peter assemble it. After which Mattie wanted to ride it. Given that Mattie was connected to a pain pump and oxygen, I wasn't going to let him ride this car alone. I wasn't even sure he understood the concept of driving. So initially I rode in the passenger seat coaching him. However, the funny part about Mattie was he intuitively understood how to drive!


Quote of the day: Nobody made a greater mistake than he who did nothing because he could only do a little. ~ Edmund Burke

As I continue to go through things at my parent's house, I came across this framed photograph. I had to be Mattie's age, around 6 or 7 here. I was holding our family Siamese cat, Minx. Minx and I had a hot and cold relationship, which is why I am surprised he complied with me holding him for this photo. 

When I looked at this photo what immediately caught my attention was the fact that Mattie looked so much like me. 

Do you recognize this photo??? This was the house that The Brady Bunch was filmed at in 1969 to 1975. What I did not know was this house is quite close to where we used to live. Someone told us about it today, so we literally drove passed the house. I can't even remember how many times I saw the Brady Bunch, too many to count. I always pictured the house in my head and frankly when we saw it today, I did not recognized it! 

This is what the house actually looks like now. To me it seems so different than what I remember. I literally drove right passed the house, and only because we had the address of the house, did we know where to stop. While we pulled over, there were about five other cars doing the same thing as us. Looking and taking a photo. The house even has a security guard outside of it. Why? Because the house was just sold to HGTV. Who plans on creating a show around renovating the Brady Bunch home. 

The Los Angeles Times reports the house sold for $3.5 million, or $1.6 million more than the listing price of $1.885 million. The home was used for the exterior shots in the television show, with the interiors shot on a sound stage. HGTV is reporting that it will restore the house to its 1970's glory. Which is also intriguing since 1970's architecture, in my opinion, is not memorable. 

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!