Saturday, November 4, 2017

Saturday, November 4, 2017

Tonight's picture was taken in October of 2007. Mattie was five years old and we took him to the Fall Festival at Butler's Orchard in Maryland. That had to be one of our favorite farms to visit in the Fall and Spring. As you can see Mattie loved their big barn filled with hay! Initially when Mattie went to this barn as a preschooler, he did not like the hay AT ALL. But you can see with age that all changed!!!


Quote of the day: If you want to conquer fear, don't sit home and think about it. Go out and get busy. ~ Dale Carnegie

Welcome to our room with a green view!!!

Dale Carnegie would have been proud of Peter and me today! It is 7:00pm, and we are still working! Our day started out by migrating many of our outdoor plants in, as next week the lows will be in the 30's! A massive change from the beautiful weather we have been having. The weather was so nice last night, that we had dinner outside.

A good chunk of our day was dedicated to picking up candy! This first load delivered to us was from St. Columba's Preschool in Washington, DC! They describe themselves as a 'small' preschool, but their donation was formidable. I loved meeting one of the School's moms and her son! They were both so animated and happy to be contributing to such a good cause. 

This was our second candy load delivered to us today. This load was from the River School in Washington, DC. You may not be able to tell, but there are 11 boxes here and they filled up our trunk and back seats (which were folded down). 

In between candy runs, we took Sunny to Scott's Run in McLean, VA. This wasn't a favorite park of Mattie's, mainly because it is all trees and not as visually interesting as some of the other parks we visited. In addition, Scott's Run is hilly. Not very good for little legs!

But it is the ideal park for Sunny. It has woods, a water element, hills, and all sorts of natural smells for him. 

I love how Sunny blends into the Fall colors around him!

This is deceptive, but this is one steep hill. Sunny wanted to go down it, which also meant we had to go back up it! Mind you under all these leaves are rocks. Of all sizes, so you have to be steady on your feet or you will go flying or twist an ankle. 

Once down the steep hill, this is the sight of the Potomac River in front of us!

In all the times we visited Scott's Run, we never saw deer! Today we spotted two. They were checking us out, but seemed used to people! They remind me of the deer (black tailed deer) my parents have in the hills of California. Our local deer are usually white tailed and are redder in color. But these two cuties had black tipped tails!

Friday, November 3, 2017

Friday, November 3, 2017

Tonight's picture was taken in October of 2006. That little pumpkin you see with a candle in it, was created by Mattie in preschool. He got to use a pumpkin carver for the first time and he made his own jack-o-lantern. He was very proud of himself!





Quote of the day: The great thing about candy is that it can't be spoiled by the adult world. Candy is innocent. And all Halloween candy pales next to candy corn, if only because candy corn used to appear, like the Great Pumpkin, solely on Halloween. ~ Rosecrans Baldwin

The candy frenzy has begun! I am answering at least 40 emails daily about the candy drive. Such questions as....

• What is the drive for? 
• When is it? 
• Where do I drop the candy? 
• Will you pick up our candy? 
• Can you find a convenient drop off location for me to deliver the candy? 
• How do you sort the candy?
• Must the candy be sorted? 

The photo above features the orange Mattie Miracle bins that sit on my friend's doorstep. The bins come outside on November 1 and I am hope to pull them in by November 6. I am hoping that limiting the collection this year to a week Post-Halloween, will cut down on the volume coming in! But given the frenzy of emails, I have a feeling we are going to get slammed with candy. Needless to say, the bins are checked throughout the day, and candy is pulled inside my friend's home. Then of course, candy that isn't sorted, get sorted. Thankfully there are groups of volunteers who get together to do this, and apparently they really enjoy this sweet task. I have a feeling while sorting, they bond and connect with others and NO ELECTRONICS are involved! A novelty these days! But unlike in typical group situations, there is no awkwardness here, because everyone is focused on the same task..... sorting candy. 

This was the first large candy delivery we received today. Has to be at least 200 pounds. We want to thank the Washington Fine Properties (Robert and Tyler) folks for this very generous donation. They are first time donors and apparently really enjoyed collecting and sorting! We look forward to continuing our work together.

The candy was delivered to me, and tonight I will be taking this trunk full to Alexandria, VA (our main drop off location). It is helpful to have the candy consolidated in one place because eventually I have to deliver this candy to 15 different locations, spanning Washington, DC, Northern Virginia, Bethesda, MD, and Baltimore, MD. LOTS of time on the road. 

Thursday, November 2, 2017

Thursday, November 2, 2017 -- Mattie Miracle is 8 years old!

Tonight's picture was taken in April of 2009. After Mattie's birthday. Mattie celebrated his 7th and last birthday in the hospital. This was the photo I snapped of Mattie as he was headed home after this particular infusion of chemotherapy. Unfortunately however, Mattie would always run a fever about two days post treatment, and would then be re-admitted to the same floor you see here. Nonetheless, I wanted to capture a moment of happiness Mattie had, because he truly loved all the balloons he received for his birthday. Since today is the 8th birthday of Mattie Miracle, it seemed only appropriate to highlight this photo.


Quote of the day: Always bear in mind that your own resolution to succeed is more important than any other. ~ Abraham Lincoln


When I stop and reflect on what we have accomplished over the last 8 years it is amazing. Others may not say it or see it, but given I know this advocacy space, it is a feat. We are slowly working on changing the message of how childhood cancer treatment is provided, and change is never easy. I recall when Mattie Miracle was first established in 2009, a leader in the childhood cancer space approached us and wished us luck. Basically saying that most non-profits fade and end after 5 years. If they make it that long! That comment stays with me even today. I can picture that conversation as if it happened yesterday, and what this person did not understand is I am NOT the kind of person that handles NO well! I almost found her pessimism a challenge! A challenge that Peter and I continue to meet and rise to each year. 

This morning I posted a happy birthday message on our Foundation Facebook page. Before posting, I consulted with Peter and his sage advice was..... tally up the number of children and families we have supported. Typically I only report the services (through our child life specialist and snack carts) we provide per year, but honestly when I added up the numbers it was outstanding!
So Happy 8th Birthday Mattie Miracle!!! The Foundation was incorporated on November 2, 2009, two months after Mattie died. Thanks to our steadfast and generous supporters throughout the years, look what we have accomplished together:

1) Supported over 21,000 children with cancer

2) Supported over 15,000 families living with childhood cancer

3) Supplied over 25,000 pounds of candy to families 


Being that it is Post-Halloween candy season, this scene is all too vivid to me now. I have received candy questions and emails all day. In fact, it is almost impossible to get anything else done, other than addressing the candy!








4) Supplied over 15,000 toiletry items to families 

Each April, in honor of Mattie's birthday, we collect toiletries for our item drive. These items then stock our Snack and Item Carts at MedStar Georgetown University Hospital and Children's Hospital at Sinai in Baltimore, MD. 

















5) Funded three child life specialist positions

Jess was the first child life professional we funded at MedStar Georgetown University Hospital. In this photo, Jess was with two nurses who were trying to simulate a procedure on Jess. Naturally the more personal insights a psychosocial professional has about what her children and families will be experiencing the more effective the care and support. 

Believe it or not, when children went for procedures and scans, they typically did this without the support of child life specialist. Peter and I learned from Mattie, how crucial Linda (his child life specialist) was to our existence. She came with me to EVERY procedure and scan and not only managed Mattie, she helped me cope. 

This is Lerin, our second child life specialist we funded at MedStar Georgetown. It was taken on Lerin's very first day of work at the Hospital. She was already making friends and getting to know patients. Lerin worked on the weekends. Prior to Lerin, there was NO child life support at the Hospital on Saturday and Sunday. Mattie Miracle changed that, because support is needed 7 days a week.

This is Morganne. She was our third child life professional in the Mattie Miracle child life position at MedStar Georgetown University Hospital. Three great women, who I am happy we were able to fund! Like Lerin, Morganne worked on the weekends, and staff have told me they do not know how they ever made it before without having a dedicated child life professional on the weekends. 



6) Funded the first evidence based Psychosocial Standards of Care for Children & Their Families, published in a top-tier medical journal. Mattie Miracle paid for indefinite open access, so the public can read and download them at no cost. To read the standards go to:
www.mattiemiracle.com/standards



We thank our supporters for making the miracles possible and helping us bring awareness to the importance of comprehensive cancer care, because ........ IT'S NOT JUST ABOUT THE MEDICINE!

Wednesday, November 1, 2017

Wednesday, November 1, 2017

This photo was taken after Mattie got back home from his School's Fall Festival in 2007. Mattie absolutely loved this Festival, because about a month into his school year (at a new school), he already had a band of friends. Mattie and his buddies hung out together at the Festival and did face painting, crafts, and the moon bounce. It was wonderful to see Mattie in his element and enjoying his new school. Since he was very hesitant, bordering on resistant to leave his preschool. Mattie's elementary school's mascot is 'the Saints,' which is why you see that painted on his face. 




Quote of the day: The whole world can become the enemy when you lose what you love. ~ Kristina McMorris


I was out and about today and came into contact with many people. The majority of whom were talking about Halloween. Again, I am not sure why I am stunned that no one was talking about the terror attack in NYC, but it caught my attention. The question is why? For the purposes of this blog, let's remove politics from this discussion. Because my interests are more focused on society being free to discuss loss, trauma, and tragedy. When we think of 9/11 or the second largest terror attack in NYC (as of yesterday), what do we typically hear coming out of people's mouths? New York is STRONG! 'New York comes back bigger and better than before.' 'We will be vigilant, so something like this doesn't happen again!' As if New York or any city is invincible. All I know is if a loved one of mine was killed yesterday for a senseless reason, I am not sure I would find such rhetoric helpful or comforting. In fact, as tonight's quote points out..... when you lose a loved one (as sane and rational as you maybe), the world does become your enemy. 

Just like with childhood cancer, we really do not want to focus upon the pervasive tragedies occurring in our cities around the Country. These tragedies aren't occurring once in a blue moon, but unfortunately on a regular basis. With their frequency and the excessive media coverage, I notice that we become complacent and are resided with the fact that this is normal. That this is how the 21st century is and we might as well go on living our lives. Certainly we want to continue on with our lives, because living in fear only makes us a victim and gives the perpetrator of such crimes power. Power to destroy all the things we hold to be true and just. But there is a fine line of moving on and forgetting. We shouldn't forget that with each one of these acts of terror, lives are taken and families are forever changed. So many went trick or treating last night and carried on with life as normal today, when the lives of several of our fellow Americans have been devastated. Terror is like cancer. It is slow growing, but can decimate communities, lives, families, friendships, and our overall way of life. Yet just like cancer, key issues are NOT addressed and confronted..... and when it comes down to it, similar to cancer, terrorists really do not care what political party you are a part of or whether you are a good and community minded person. The main goal of a terrorist, which is reminiscent of cancer, is to destroy as many people (or health cells) as possible. 

I have noticed whenever I am around people who have suffered a loss or a trauma, they find it easy to talk to me. While others are running the other way, I am walking toward the issue. Forward because it is only when we confront the feelings we are left with from cancer or any kind of trauma, are we able to find a way to carry on, find meaning in our lives, and re-engage with the world. We are really missing something by not feeling comfort to talk about the sadness, the unhappy aspects of life, and connect with others around these feelings. It is those emotional connections that enable us to be stronger not only as individuals but as a society.  

I do not spend much time of Facebook. For many reasons, but with Mattie Miracle's candy drive under way, it  brings me to social media. But what is posted all over Facebook are family photos of Halloween. It is hard to see Mattie's friends thriving and moving forward, whereas for Peter and me, I feel like we are stuck in time. Time when Mattie was 7. 

The photos you see were pumpkins one of Mattie's nurses posted on Facebook. The nurses decorated the unit for the children and families in the hospital. Very creative, no?

Seeing decorations in a hospital is important. It orients you to time and date. Otherwise, you really do forget what time of day it is, and the season!

Mattie would have loved the Nemo clown fish and the Halloween cat!

Tuesday, October 31, 2017

Tuesday, October 31, 2017 -- Mattie died 424 weeks ago today.

Tonight's picture was taken in October of 2008. Our last Halloween with Mattie. That year, Mattie went trick or treating at the hospital by day and then with his friend, Zachary, by evening. Mattie was very concerned about going trick or treating because he was recovering from limb salvaging surgery on his right arm. You can see that Mattie's right arm can't be seen in this photo. It was because it was in a sling and cast under his costume. That evening, Mattie and Zachary went from house to house in Zachary's neighborhood. Two friends of Zachary joined them, but they couldn't appreciate why Mattie was walking so slowly. As they wanted to run from door to door and they also wanted Zachary to dump Mattie and leave him behind as he was slowing down the process. Keep in mind that Zachary was only 6, like Mattie. Yet, Zachary made the decision to tell his friends to go on without him because he was staying with Mattie. Rather remarkable no? After they went trick or treating, Mattie had a great time sorting candy with Zachary. Mattie wasn't into candy at all, so ironically the thrill for him was the sorting. He was the perfect person to go trick or treating with, because Mattie was happy to trade any and all candy.


Quote of the day: When you see a child who could barely wiggle his fingers the day before lift his hand up to feel a dog’s fur, your heart just grows two sizes. ~ Sherry Fisher 


A friend sent me a link to an article called, Paging Badger (I included it below). It is a great article which highlights the value of animal assisted therapy at Johns Hopkins Hospital. However, this isn't just happening at Hopkins. Instead, hospitals all around the Country are figuring out ways to integrate animals into their institutions. Of course in the past hospitals were very concerned about infection and the control of animals in units, but now hospitals are learning that when hygiene and training requirements are met, these animals offer benefits that human connections can't!

It may sound cozy or cuddly to have a dog with you in a hospital. But it is much more than that, as recent studies have shown that animals used in a clinical setting can improve pain levels, mood, and other measures of distress, and serve as a prime motivator in physical rehabilitation. So what is Animal Assisted Therapy (AAT)? It uses dogs and other animals to help people recover from, or better cope with, health issues such as heart disease, brain trauma, cancer, and mental health disorders. 

The University of Tennessee College of Veterinary Medicine began a three-year study to measure the effect of pet therapy sessions on pediatric patients 20 minutes prior to surgery. The preliminary results found that the patients who interacted with a therapy dog needed less anesthesia and pain medication than a control group given an iPad. They didn't explain why, but now that I have the insights of living with Sunny, there is a special connection and bond that can form with an animal that NO device is ever going to provide. Yet dogs offer support in NON-verbal ways. You have no doubts about the motive of a dog or wonder what they are thinking, like a human. Which is why developing a quick relationship with a dog is much easier. Trained dogs are very compliant, and when you pet a dog, look in its eyes, and the dog remains by your side, some how an instant bond is created. 

The article discusses the use of therapy dogs in physical rehabilitation. It has been found that dogs provide distraction during harder activities, and the parts of therapy a patient may not like to do, go more smoothly when a dog is present. I can absolutely see this happening and I reflect back on the times Mattie did physical therapy and I know what always worked was when distractions were performed. 

If Mattie thought it was a game, or he had to compete with someone by his side, for a prize, he was motivated. Otherwise, typical strategies wouldn't have worked with Mattie. He was too exhausted from treatment and his surgeries left him in great pain. 

As many of you know, I would like Sunny to be a therapy dog. It requires that he and I undergo more training. But frankly there are so many different training institutions that I have to make sure that whatever hospital I plan on taking Sunny, that they will accept his certification. It's a matter of finding the right match for us, so hopefully one day it will be..... Paging Sunny Brown!

Paging Badger:

http://www.johnshopkinshealthreview.com/issues/fall-winter-2017/articles/paging-badger

Monday, October 30, 2017

Monday, October 30, 2017

Tonight's picture was taken in October of 2006. This happens to be one of my favorite photos of Mattie and me. I think you can see we looked a lot alike from our eyes to our smiles! That weekend we took Mattie to a fall festival. Which was a typical occurrence for us to ring in the change of season. As Mattie grew older, he loved the whole experience. Especially the pumpkin picking, the slides, and all the activities. 



Quote of the day: Fire in the heart sends smoke into the head. ~ German Proverb


I had a meeting today which made me upset. I am not getting into the specifics of it here, as I have found sometimes my words are read and taken out of context. However, when I found this German proverb tonight, I knew it captured exactly how I felt. Since Mattie died, I have two speeds...... very on and very off. I rarely have energy levels and moods that are gray or in between. However, it is very easy for me to get angry now. When you think of anger, you may think it arises over someone doing something to me or as is typical with someone who is angry they will lash out and explode. In my case, the fire starts in my head!

With me, none of these things about anger apply. Most people can't tell when I am angry, unless you know me well. However, what makes me angry is not hurtful things said to me or about me. What gets me furious is a total misunderstanding of the kind of support children with cancer and their families need. 

I have a lot of experience working with the health care profession, everyone from doctors to psychosocial professionals. Unfortunately across the board (it isn't field/training specific), many think they understand the psychological and emotional toll of childhood cancer and how best to meet these needs, but in all reality, they fall short. The number one reason of course is because they are looking at the issue with their clinical lens. They haven't lived the experience and in this case, I think having personal insights of having to fear for the life of your child and live long term in a hospital makes a huge difference. Which is why I am always, always perplexed with personnel and administrators who seem to think they know how to provide optimal quality of care, without truly seeking input and feedback from the consumer themselves! 

Goodness gracious..... it has been 8 years since Mattie died and I still have this internal anger. I am not sure this is something that will ever go away! I imagine it won't until I see the health care system changing. Until psychosocial care is  fully embraced and other families don't have a Mattie, Vicki, and Peter experience! Yet like the government, this massive change will occur at glacier speed. So in the mean time, I need to keep on speaking up. It is just the way it has to be, no matter how uncomfortable and exhausting it is!

Sunday, October 29, 2017

Sunday, October 29, 2017

Tonight's picture was taken in October 2004. Mattie was two years old and was attending his first bunch of Fall Festivals that year. Initially Mattie found the whole experience overwhelming. As there was typically a lot of noise, crowds, activities, and commotion. However, with each year that Mattie attended, he got used to the experience and turned out to love going. Mattie always loved picking out pumpkins, regardless of his age. He was attracted to those lovely orange objects and I can't tell you how many pumpkins we landed up coming home with. One year we must have had 10 pumpkins or more! Mattie loved playing with the pumpkins and including them in his play schemes!


Quote of the day: The nicest thing about the rain is that it always stops. Eventually. ~ Eeyore

There are some people who absolutely love the rain. I am not one of these people and I have never cared for the rain or getting wet. If Sunny weren't in our lives, I most likely wouldn't have wanted to go for a walk today. But since Sunny needs an adventure, we went to Great Falls Park today. 

We chose to go to that Park, because I knew it wouldn't be crowded. It is a lovely national park to visit, but on sunny weather days, it is packed with people and the car lines to get in can be backed up for miles. I speak from experience!

Sunny absolutely loves to walk in the woods, to smell trees and look for wildlife. Another wonderful part of this park, is the Falls. They are an incredible sight, even on a grey rainy day. 

Can you see the two people in kayaks in the water?

This rock gave us a chuckle, because we thought it looked like an animal!

 Checking out the Falls. 

Sunny was super excited, we practically couldn't contain him for this photo! He was eager to go on the trails. 

This isn't some photo of rocks! This was the trail we walked with Sunny. It is literally right by the overhang to the water. Sunny takes to these rocks like a duck to water. He has no problem bounding up or down them. 

Sunny and Peter on the top of the rocks!

You can see Sunny is loving it! Sunny is my excuse to go outside for walks at all times of the year. Prior to getting Sunny, you wouldn't find me walking in the rain, snow, or cold weather. Now I just dress appropriately and off we go! He has changed my thinking!