Saturday, September 1, 2018

Saturday, September 1, 2018

Tonight's picture was taken in August of 2006. Mattie was four years old and each August I took him to Los Angeles to visit my parents. Mattie was standing in front of one of the famous La Brea tar pits. This pit is right outside the George C. Page Museum. The Museum houses and exhibits paleontological discoveries from the very site on which it sits. As discovered by early occupants of Rancho La Brea, asphalt deposits underlie the whole Hancock Park area and contain the fossils of thousands of Ice Age animals that got trapped in the sticky pools. 

Literally the smell of tar by this pit is overwhelming. Mattie found the whole experience fascinating and never got tired of visiting it each year. 


Quote of the day: I was constantly humiliated. Among people, I learned to hate and to be embarrassed. ~ Marcos Rodríguez Pantoja


My mom sent me an article that captured my attention. It is entitled, How to be human: the man who was raised by wolves. The article highlights the life of Marcos Rodriguez, a man who was abandoned by his parents at age 7, and was left to raise himself in the mountains of Spain. Nothing about his story is positive. His mother died before he turned 7. His father remarried, but this mom was cruel to him and constantly beat him. One day a "rich man" came to his parents home and Marcos left with him. Never to see his parents again. What he found out was he was sold to the "rich man" to tend to his 300 goats in a very deserted part of the mountains. Historians claim that it was common in the rural south for children from impoverished families to be sent to the mountains to look after sheep and goats in exchange for money. However, it was VERY uncommon to sell your child for money, like what happened to Marcos.

Marcos had NO ONE in the mountains to raise and support him, other than the animals like wolves. He was raised by wolves, who protected and sheltered him. With no one to talk to, he lost the use of language, and began to bark, chirp, screech and howl. At the age of 20, he was found by police and was taken from the mountains. He was forced to live back in society and was placed in convents, abandoned buildings and hostels all over Spain. He worked odd jobs on construction sites, in bars, nightclubs and hotels. He was robbed and exploited, as people took advantage of his unworldliness. Some people did try to help him, but most found him awkward and uncommunicative, and he was largely shunned by society.

Marcos admits that he has always had a bad time living among humans. Which makes perfect sense since the nightmare began with his parents. Someone even tried to reunite Marcos (as an adult) with his father, and his father was not interested in meeting his son. There is research that highlights the window of language development. Meaning that if a child isn't exposed to hearing words by a certain age, the child will never be able to communicate verbally. However, reading this story, I would say there is also a window into socialization. Because Marcos spent his formative years with animals, he did not have the opportunity to learn the complexities of dealing with humans. Humans who can say one thing but mean something totally different. The art of making judgments, knowing who to trust, and how to advocate for one's self for example. Therefore, the window into socialization closed, making it almost impossible for Marcos to live in what we would consider a 'normal' setting. 

The article mentions that Marcos felt he could communicate with wolves, snakes, and other animals. He discusses how the animals looked out for him. Of course scientists refute both possibilities, but since scientists haven't lived his experiences, I am not sure how they know there isn't some truth to this belief. I find it particularly fascinating though that Marcos feels it was easier to live in the remote mountains with animals than in our human society. It is an intriguing story that highlights the frailty, cruelty, and hatred that lives within humans. All characteristics that are not in the lexicon of animals. When Marcos was vulnerable in the mountains, the animals became his friends, and he felt secure with them. Whereas, when integrated back in society (still being vulnerable... no language abilities, didn't understand human behavior, customs, and actions, and no money), he wasn't greeted with kindness, empathy, and support. But instead taken advantage of and made to feel very inadequate. 

Seems we have a lot to learn from our animal friends!

Read the story for yourself:
https://www.theguardian.com/news/2018/aug/28/how-to-be-human-the-man-who-was-raised-by-wolves

Friday, August 31, 2018

Friday, August 31, 2018


Tonight's picture was taken in August of 2006. That summer my parents and I took Mattie to San Diego. Mattie loved going to San Diego because there were many activities geared toward his interests and though it is hot in the summer, it is manageable. That trip, we stayed at an Embassy Suites hotel and I had Mattie pose for a photo on our balcony with the Coronado harbor behind him.







Quote of the day: You don't learn to walk by following rules. You learn by doing, and by falling over. ~ Richard Branson


I would say that Branson's quote is quite on target. Or at least this is how I feel  especially as it relates to running the Foundation. Every aspect of the Foundation I had to learn, since the skills I use weren't taught to me in school. 

Over the last several months, I have gotten a crash course is starting up a research grant program. Mattie Miracle is offering grants through professional associations, but every aspect of the process has been part of a learning curve. Peter and I were very impressed with the caliber of proposals that were submitted. Honestly the researchers took our request seriously and applied in a very methodical and thoughtful manner. 

The association where our grant is housed had a scientific review committee evaluate and rate the proposals. They selected ONE study our of 12 based on (26 letters of intent came in, and then we selected 12 to submit proposals):

• Significance to psychosocial oncology and the implementation of the pediatric standards
• Scientific Merit
• Innovation
• Appropriateness of Methods
• Qualifications of the investigator (research team) to conduct study

However, when Peter and I think of implementation studies that we wish to fund, we think of actionable research. Research that produces an end product that can be used and adapted to other treatment sites. Clinicians are looking to the leaders of the Standards project for tools/models they can use to implement Standards at their site, and our implementation grants can help address this need.  


So what's the point to all of this? Well one proposal was selected for a Mattie Miracle grant by a scientific review committee. In addition, Mattie Miracle decided to fund five additional studies based on two criteria: 1) that the study address a different Standard (since there are 15, that isn't a problem), and 2) that the study has the potential of producing a product that can assist other treatment sites with implementation. 

When we decided to have a professional association administer the grant process, I was happy about this decision because I figured that they had a framework in place that could be followed to lighten my admin load. But now that Mattie Miracle has selected to fund specific proposals on its own, I am responsible for that communication and follow through. We shall see how this all works out in the end. 

But I am happy to say, we are funding 6 studies, each addressing a different psychosocial Standards. In total, we are funding $40k in research this year, with the intention of making this an annual initiative. 

  

My boy got groomed today! Sunny is a pip. When I take him inside to see the groomer, he shakes like a leaf. He appears to be super anxious. Yet his groomer tells me that as soon as the process starts he is as calm as a cucumber. So we have concluded that the anxiety show is for MY benefit. Sunny has been seeing the same groomer for two years now and she loves him. She says he is her favorite. 

Thursday, August 30, 2018

Thursday, August 30, 2018

Tonight's picture was taken in August of 2006. That summer we took Mattie to Los Angeles to visit my parents. From there, we all went to San Diego. While there, we visited Mattie's favorite theme park.... Legoland. Here you can see Mattie on top of a Lego fire truck! This was the ideal park for Mattie, since he LOVED Legos. But really it is a venue that appeals to people of all ages. 

Quote of the day: Just living is not enough… one must have sunshine, freedom, and a little flower. ~ Hans Christian Andersen

Sunny & Vicki vs The Heat!!! THE HEAT WON!

Sunny and I took two big walks today. It was the kind of heat that literally after each walk, I felt ill. The kind of symptoms one has with heat stroke.... headache, nausea, dizziness, and rapid heartbeat.

For the second walk in the afternoon, I was so out of it, both Sunny and I landed up sitting on the air conditioning vent. It was the only way I could restabilize. 

As August is coming to a close, the inevitable is upon us.... September. I truly dislike that month, for multiple reasons. The top one being it's the month that Mattie died. But second, September is national childhood cancer awareness month. It is a MONTH that gets a TON of attention in social media...... with go gold campaigns. Certainly awareness of childhood cancer has to happen, but why only in September? These campaigns really upset me because cancer is a 12 month, 365 day a year problem. Not just a 30 day issue. As the calendar turns over the facebook postings will be flying all over the place. It is hard to be upbeat about these messages when I know they do little to affect change. At the end of the day, putting it bluntly, the medicine failed Mattie. Not only Mattie, it fails thousands of children in the USA each year. When putting it in this context or looking at it from my lens, seeing all the ads and facebook likes does not provide much comfort or peace. 

Wednesday, August 29, 2018

Wednesday, August 29, 2018

Tonight's picture was taken in August of 2008. Mattie was home and in between treatments. I recall this day so well, because Mattie was in a foul mood. Under the circumstances it was totally understandable, but the various moods that resulted from cancer treatment left Peter and I stressed out. It was truly overwhelming, but we were committed to being there for Mattie from day one, to his last day. That afternoon, someone in our support community dropped off this large bubble maker. This caught Mattie's attention! Frankly all the daily gifts from Mattie's support community saved us, as we always used these gifts as positive distractions. Which could change Mattie's mood temporarily!

Quote of the day: The trick in life is learning how to deal with it. ~ Helen Mirren


Somehow walking back and forth to the dentist today, followed by walking back and forth for my physical therapy session wiped me out. I was down for the count this afternoon, and I believe the intense heat and humidity did not help the situation. 

While I was lying down on the couch, I could see Peter on his conference calls. Do you see who is sitting next to him? It is hard to see her, but Indie was sitting on top of Peter's work bag. 

Of course my loyal side kick was lying by the foot of the couch. He keeps track of my every move. 

I may post a lot about Sunny, but Indie has it made here too. Each of our living room chairs features a different cat pouch. She has two scratching posts upstairs, a dedicated dining room chair with a blanket on it, and her own cozy nook in our walk in closet! 

Needless to say, these two are good companions and they keep us on our toes. It is hard to believe we have had them for two years now, and on Sunday, Sunny will be celebrating his 7th birthday!

Tuesday, August 28, 2018

Tuesday, August 28, 2018 --- Mattie died 467 weeks ago today. 

Tonight's picture was taken in August of 2008. Mattie was very new to the whole treatment process, yet he quickly made friends. Pictured with him were Jessie and Jenny, Mattie's art therapists. These women were incredible and they truly engaged Mattie's brain, body, and spirit. As you can see, Mattie took to the art table like a duck to water. He was a creative and engaging child and his therapists understood him. Needless to say, many of Mattie's creations that he made with Jenny and Jessie are part of his legacy. 


Quote of the day: No one appreciates the very special genius of your conversation as the dog does. ~ Christopher Morley


I started my day with the dermatologist. I just love when she decides to cut a piece of my skin off and then tells me she has to send it to pathology! This is the third time she has done this to me. The first time I was worried, the second time (as it was a slice from the same location as the first) I was worried, and now the third time I am still worried. The keyword is worried. These folks have NO IDEA who they are dealing with, but any time I hear you are sending something for pathology, it brings me back to 2008 and Mattie's diagnosis. She seemed calm about it but then again, she wasn't pulling tissue from her back. 

Late this afternoon, my neighbor asked me if I could watch her dog, Maven, for thirty minutes while she was on a phone interview. Maven is a cutie who has a lot of energy and likes to bark. Sunny knows Maven, but Sunny is not used to other dogs coming into his home. So that was an experience. 

I am not sure who was more traumatized from this visit..... Sunny or Indie!!! Indie did not back down and decided to guard the staircase, and Sunny..... well he is truly my 'jealous George.'

Indie staring down at Maven and Sunny. She wasn't moving, but was transfixed for 45 minutes on the staircase. Which is ironic, because any time humans visit us, Indie runs upstairs and hides under the bed. That did not happen with Maven today. I think Indie did not know what to make out of Maven..... she was perplexed and you could see it. 

Monday, August 27, 2018

Monday, August 27, 2018

Tonight's picture was taken in February of 2009. Sitting next to Mattie was Anna. Anna was Mattie's physical therapist. It happened to be Anna's birthday that day, and Mattie decided to share his homemade cupcakes with her! Whenever I think of physical therapy in ANY context, the immediate vision that pops into my head is Anna. Anna and Mattie and their journey together. Anna worked very hard at managing Mattie's lack of mobility and his pain. Mattie put Anna through her paces and forced her to think outside the box when working with him. But she rose to the occasion and they had a great relationship together. What I always appreciated about Anna was her honesty about Mattie's physical abilities post surgeries and helped to manage our expectations regarding Mattie's ability to walk again. What I mean by this is after Mattie underwent his second limb salvaging surgery, he NEVER walked independently again. The doctors seemed surprised by this, but Anna wasn't. She wasn't because she understood the nature of rehab. Since Mattie couldn't put pressure on his arms, there was no way he was easily going to regain strength and abilities in his legs. As he couldn't use crutches or do any weigh bearing exercises. 


Quote of the day: If you believe it will work out, you’ll see opportunities. If you believe it won’t, you will see obstacles. ~ Wayne Dyer


I had my first physical therapy appointment today to help manage the pain in my hip. The orthopedic doctor I saw in July wants to try more conservative options first before leaping into surgery. Which I appreciate. He referred me to a physical therapist who specializes in hips, specifically the hip issue I have. I have something called a labral tear. It is an issue that will NEVER heal itself. So one may ask..... then why do physical therapy? The thinking is to relieve some of the inflammation around the tear, in hopes that it will improve my mobility and decrease my pain. In theory this makes sense, given that the doctor believes I have been living with this tear for a number of years.  

A hip labral tear occurs where there is damage to the labrum within the hip joint. The hip joint is where the thigh bone meets the pelvis. It is described as a ball-and-socket joint. This design allows the hip to move in several directions. The bony socket is surrounded by a ring of cartilage called the labrum. The labrum provides additional stability to the hip joint. A labral tear results when a part of the labrum separates or is pulled away from the socket. Most often, a labral tear is the result of repetitive trauma to the hip, either due to running or repeated twisting and cutting.

Given my experiences with Anna, I outright asked this therapist today for her option on my condition. Since she has treated many people with labral tears, I wanted to know how helpful physical therapy was going to be. Basically I wanted her to manage my expectations. Given that I have an impingement (bony abnormality in the hip joint) as well, the success with physical therapy is much lower. She feels that we will know in four weeks if this option will work. However, she tried to normalize the surgery for me. Needless to say, I will take it one step at a time. All I know is after she applied these hands-on treatments to gently move my muscles and joints in my hip, my pain level this evening has increased significantly! I am moving to icing my hip, in hopes that this pain goes away. Mind you, I have been on a high dose of a prescribed anti-inflammatory since April. It is the only thing that allows me to function at all. But now, even on this medication, I am feeling pain after today's manipulation. It doesn't really inspire me to go to physical therapy twice a week. 

Sunday, August 26, 2018

Sunday, August 26, 2018

Tonight's picture was taken in August 2008, shortly after Mattie was diagnosed. Mattie's art therapist got to know him quickly! They understood right away that he was a Scooby Doo fan. So they traced a Scooby scene on a ceiling tile and for a couple of weeks we worked on painting it in. Needless to say that ceiling tile is one of the only painted tiles that remains in the clinic today. 


Quote of the day: The objective of cleaning is not just to clean, but to feel happiness living within that environment. ~ Marie Kondo


I do not think Peter nor I had cleaning in mind today. It kind of just happened. Yesterday, we were riding up our complex's elevator and posted on the elevator wall was an ad to purchase a dining room table and six chairs. Given we live in a huge complex, people are always selling or giving away furniture when they move. We have lived in this complex for years, and NEVER was I tempted to buy someone else's furniture. Things never appealed to me, well that is until yesterday. 

However, I knew who was selling the furniture, as it is our next door neighbor who is moving back to Ireland. So I text messaged my neighbor last night and made an appointment to see the furniture at noon today. Peter and I went in and I was happy that the photo lived up to the actual product. Needless to say, we purchased this Macy's dining room set for a steal. Our neighbor even helped us carry in the table and chairs.

This photo was taken on Thanksgiving of 2017. You can see our old dining room table here, surrounded by horrible chairs. We have had this arrangement for a good portion of our married life, but I was never happy with it. Mainly because it wasn't comfortable to sit at this table, given where its legs are located, not to mention the chairs never went well with the table. The chairs always were too low for the table. 

However, our old dining table belonged to my paternal grandmother. She lived in a small apartment in New York and her table was very clever for her space. The table folds up and can act like a side table (perfect for a small apartment). I did not want to get rid of this family table, so instead we folded it (which is how I remember it at my grandmother's apartment) and it now sits in front of our picture window. 

Here is the set we purchased today. It is in excellent shape and we are so excited to have real furniture, that we ate lunch together at this table! 

However, you know when you change one thing around, you begin to look at other things. We have two break fronts in our dining room, and literally we went through every drawer and cabinet today to purge out items that we no longer use. It took hours! We literally filled four packing boxes and three garbage bags! I can't wait to donate these items tomorrow. Tonight's quote is spot on.... cleaning things out does produce more happiness living in my environment.