2016 Walk & Family Festival --- an $85,000 success

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 6th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

October 27, 2016

Thursday, October 27, 2016

Thursday, October 27, 2016

Tonight's picture was taken in October of 2006. Mattie loved Patches our calico cat and wanted to be her for Halloween. Well actually he wanted to be Patches in 2005, so Mattie and I made this costume together from scratch. However in 2005, Mattie developed sepsis and landed up in the hospital overnight for several days over Halloween. Thankfully the costume was made out of sweat suit material and by 2006, it fit Mattie perfectly. 

Quote of the day: There is no point treating a depressed person as though she were just feeling sad, saying, 'There now, hang on, you'll get over it.' Sadness is more or less like a head cold- with patience, it passes. Depression is like cancer.  Barbara Kingsolver

Given how I was feeling last night, my lifetime friend, Karen, sent me the article below entitled, "I'll Never be 100% Again." The article in essence is about a comedian who tragically and unexpectedly lost his wife. The article describes his reaction to her death, how he is dealing with grief, and how this impacts his comedy routines. Which is interesting in and of itself, because for the most part people don't talk about grief in our society. It makes people very uncomfortable and it is a conversation stopper! So if he can do integrate grief into his act in a way that makes the subject more approachable..... I think that is great. Grief is a long term issue and it affects a countless number of people. But given that people rarely talk about it, it is a silent killer that can eat you alive.  

I find it very refreshing to hear a man who lost his wife state.... "I'll never be 100% again!" I say refreshing because he is acknowledging the depth of the loss and how he doesn't expect in a week, two weeks, or a year that he will bounce back. Or worse return to the way things used to be. Because in all reality..... they won't! His life is permanently altered as is their daughter's! 

I attached the article below, but the paragraph in the whole article that literally jumped off the page to me was.........

As serious fans of his comedy know, Mr. Oswalt has suffered from depression, but this, he said, was far worse. “Depression is more seductive,” he said. “Its tool is: ‘Wouldn’t it be way more comfortable to stay inside and not deal with people?’ Grief is an attack on life. It’s not a seducer. It’s an ambush or worse. It stands right out there and says: ‘The minute you try something, I’m waiting for you.’”

I love his descriptions of grief as being an "attack on life," or "an ambush," which can leave you with a great deal of helplessness and fear. So much so that it can prevent you from trying new things or venturing out to live in the world. Mainly because you live braced in anticipation for the next situation, person, or event to set you off, which can send you spiraling further downward in your own sadness, anger, and disillusionment. So what do you do? Do you try to move forward with the pain and be a part of our everyday society, or do you retreat to your inner world in which you feel protected from the sensitivities of life? I would say anyone dealing with grief does both! I know my own inner thoughts and feelings but when I hear aspects of them expressed through the words of others (like in this article)..... I take notice.   

I'll Never Be 100% Again:


October 26, 2016

Wednesday, October 26, 2016

Wednesday, October 26, 2016

Tonight's picture was taken in December of 2008. Next to Mattie is Tricia. Tricia was Mattie's favorite nurse. This is the kind of nurse Tricia is... she gets down on the floor and works with her patients. She wants to know them not as a number, but as a child! Which is why she is so successful with children and parents. 

I met Tricia the first week that Mattie began chemotherapy. It was within that first week, that I knew I was in the presence of a very special and unique professional. Why? Because Mattie was having a melt down about being in the hospital and adjusting to his diagnosis. He was mad at me! When Tricia entered the room to take Mattie's vitals, he was so upset that he was yelling, kicking me, and pushed me against the bathroom door. Tricia could have turned around and walked out of the room. But she didn't. Instead, she de-escalated a volatile situation. She told Mattie he did not mean what he was saying and that we were both tired. So she escorted us to Mattie's bed, put us in it, and tucked us in together. It was at that point I saw not only Tricia the nurse, but Tricia the mom and human being. I have countless number of stories about Tricia, as does Peter.... since she cared for ALL three of us. The true test though was one day Mattie was in the hallway of the pediatric intensive care unit and Mattie screamed out "Tricia." She came flying over thinking something was wrong. When she bent down to address Mattie, he told her "I love you." It was a very touching scene, and one I doubt Tricia has forgotten either. 

Quote of the day: Good friends help you to find important things when you have lost them - your smile, your hope, and your courage.Doe Zantamata

This afternoon, I had the opportunity to go to MedStar Georgetown University Hospital. However, right before going to the hospital, I attended a friend's Fall brunch at her home. The event was lovely, but always for me parties of any kind provide their own challenges. Mainly because when moms get together the conversation naturally unifies around children. I think that is absolutely normal and wonderful...... well unless you are a mom who lost a child to cancer. I walk a fine line because I don't want to be rude to those around me, and at the same time I have to make sure I am okay. Despite how ever I handle it, it lands up not going well for those around me or for me. 

So this was the state I was in when I entered MedStar Georgetown today. Peter and I have been requesting to push our Mattie Miracle Snack/Item Cart at the hospital for years. This year our request is being met and I am thrilled about it. It is very important for me to see the cart in operation and to meet the patients and families utilizing the cart. Pictured with me above are:
Jess (who was the first child life professional we funded and brought to Georgetown. We funded Jess for four years), Tricia, Vicki, and Jane (our philanthropy contact at Georgetown). 

I can attest to the fact that families were SUPER grateful for the cart today. Each one couldn't get over that the items were FREE and told me countless times what a lifesaver it is to them! One little boy did not find the candy he was looking for the cart, so I literally went to the hospital gift shop and bought it for him. 

Pushing the cart around was important for me as Mattie's mom and as a Foundation leader. Jane and I went into the PICU and I saw two nurses I know there and then of course I went into the hematology and oncology unit and ran into Tricia. Despite having an emotionally challenging day, when I am with Tricia, I am Mattie's mom. I don't have to pretend otherwise or sugar coat things. Mattie comes alive when I am with Tricia and it is safe to talk about him without worrying that I will upset her. We lived through Mattie's care together and Tricia was one of the nurses who told me honestly that Mattie was dying. 

Would pushing the snack cart have the same meaning today if I hadn't bumped into Tricia? That is a hard question to answer. I would have appreciated my role from a professional standpoint, but reconnecting with Tricia, helps me keep Mattie's memory alive and I can't even put into words or quantify how important that is to me. 

October 25, 2016

Tuesday, October 25, 2016

Tuesday, October 25, 2016 -- Mattie died 371 weeks ago today. 

Tonight's picture was taken in October of 2006. Where else..... but at a Fall Festival! Mattie loved these festivals, and frankly so did I. He was a great excuse for us to go to them, since I did not grow up doing this, nor do I think such things really were as popular back then. So in 2006, when Mattie was four years old, he was about 3.5 feet tall! So happy I have this for the record. Naturally I always thought I would be sharing these photographic memories with Mattie, to remind him of the things he together. I never thought they would serve as a way to document Mattie's life because Mattie would no longer physically be with us. 

Quote of the day: A waiting person is a patient person. The word patience means the willingness to stay where we are and live the situation out to the full in the belief that something hidden there will manifest itself to us. Henri J.M. Nouwen

I love Nouwen's quote, but I can assure you there is NOTHING hidden within me that I need to find while waiting for the State Department to finish their construction work. For TWO YEARS now I have been dealing with their incredible mess, their inconsiderate and thoughtless behavior, and their false promises about a completion timeline for their projects. 

On Friday, the State Department project manager and foreman assured me that work was COMPLETE. That NO MORE was in my future, and they weren't going to spring anything on me in Spring 2017.

On Friday I was thrilled, until MONDAY came. Look at Monday's view outside my window!!!!!!!!!!!!!!

So I complained to our building manager. Within minutes the ladders were disassembled and things cleaned up. So I thought things were done....... UNTIL................................

Today!!! Look at today's view! I have no confidence in anything they tell me. Except I know I have dealt with noise, dust, and their debris for TWO YEARS and I am reaching my tolerance level. Last year they were so close to my windows, I had to keep the drapes shut. 

So again I complained today! If this occurs again tomorrow, I am going to lose it, and when I lose it, you really don't want to mess with me. 

They have disrupted two of my Springs, two of my Summers, and one of my Falls. I am not planning on a second Fall being this way. 

If all of this wasn't bad enough, then I was contending with a toxic smell in our kitchen. We honestly couldn't pin point where it was coming from last night. This morning it seemed worse and at 6:45am, I started doing a point by point search. Until I found the culprit. Under our kitchen sink we had apparently stored Armor All, for our car. It cleans car leather and tires. I can't explain how this happened because the plastic spray bottles are still intact. Yet the Armor All liquid had pooled in the cabinet under the sink and it destroyed my cabinet liner. However, the smell of Armor All in bulk is down right toxic. It was like varnish or turpentine.... a very powerful smell. Fortunately I had the where with all to open ALL the windows and then immediately dispose of the materials I used to clean this spill. Yet I had this liquid all over my hands and the fumes in my lungs. The consistency of Armor All on one's skin is like glue. It took a lot of scrubbing to remove it and half of a day for my nose and lungs to return to normal. Tonight I searched Armor All on-line, and this is what I found..............

WASHINGTON, Nov. 7, 1996 -- In two separate incidents, a toddler nearly died after coming in contact with a very small amount of a widely available car wheel cleaner, according to a report in the December issue of the Annals of Emergency Medicine.

Each child was rushed to the emergency department after becoming drowsy and vomiting, but other signs of chemical poisoning were not initially apparent. Both children appeared to get better, then experienced cardiac arrest. When the parents remembered that their child had been playing near a bottle of ARMOR ALL(TM) Quicksilver wheel cleaner, emergency physicians were quickly able to diagnose and treat for poisoning.

One child, who was believed to have been sprayed with the cleaner, has some long-term motor and speech delays. The other child recovered completely.
Authors found that the combination of ingredients in the cleaner may have delayed serious symptoms and caused an initial underestimation of the severity of exposure. "These are the first two cases we have seen from a hydrofluoride acid-like substance, mainly ammonium bifluoride, but the general public frequently uses similar cleaners for automobile care," says Anthony Scalzo, MD, senior author and an emergency physician. When tested, traces of a toxic ingredient in the wheel cleaner were found in both children.

"The number of reported cases is small but parents need to be aware of the extreme toxicity of these cleaning products," says Ann Klasner, MD, first author and senior emergency medicine fellow. Less than one teaspoon of the ammonium bifluoride mix can prove dangerous to children. To prevent these kinds of problems, emergency physicians recommend. 

October 24, 2016

Monday, October 24, 2016

Monday, October 24, 2016

Tonight's picture was taken in October of 2006. We took Mattie to a fall festival and as you can see he posed in front of a corn maze. Mattie loved all the fall festival activities and really got into the spirit of them! It was always wonderful to see the world through Mattie's eyes, because we never focused on the same things. Which meant he opened up another dimension to me. 

Quote of the day: The whole problem with the world is that fools and fanatics are always so certain of themselves, and wiser people so full of doubts. ~ Bertrand Russell

I have noticed pretty soon after getting Sunny that his neck is lumpy. Literally behind his ears and along his neck there are times you can feel something similar to a goose egg. Since I know Sunny has been examined by my vet and multiple other vets, I really did not think much of it. I deduced in my own mind that these goose eggs were just neck muscles. Typical of a border collie. 

However, last week I bumped into my neighbor. She greeted Sunny and was petting him. She then said to me.... "you know he has lumps behind his ears that are most likely tumors." If that wasn't bad enough she then said.... "well you know dogs get cancer." She said it so casually, I literally just looked at her. It would be bad to tell any dog owner this, but definitely one who lost a child to cancer. So I just chalked her comments up to insensitivity at the time. 

Yet as Bertrand Russell's quote points out, sometimes no matter how solid or wise you feel about something, you can grow doubts. For a week, what my neighbor said was weighing on my mind. So on Saturday, I called my vet and made an appointment for this morning. 

Sunny saw the vet today and she handled my concerns very well. She confirmed my initial thoughts..... Sunny has LARGE neck muscles. She said his lymph nodes are fine and these bumps are not tumors! Now logically I knew this too, but given what I went through with Mattie, I wasn't about to wait around and see. I can't wait to see my neighbor again and educate her!

What I did learn today is that Sunny has gained five pounds in a month. So he is now going on a more limited diet. It is hard to imagine how he is gaining weight with all the exercise he does on a daily basis. But the vet and I talked about limiting treats. This won't be easy since Sunny LOVES, LOVES, LOVES food. But I need to do what is in his best interest, and we will find a way to make this work.  

Sunny and I walked over six miles today. In between I did a lot of computer work. He was very patient during my work times, but was super grateful when I took breaks. Prior to Sunny I wouldn't have taken breaks, I would have just continued sitting and working. Yet I can't go on a Sunny walk without hearing from multiple people that I have a beautiful dog. Sunny is physically beautiful, but also it is his temperament that is beautiful. I could see that temperament shining through the photos of him on the internet when adopting him. Mind you I never met Sunny before adopting him. Which is probably not the best way to adopt a dog, but it is the way many rescue groups work these days. One man, who I did not know, waved at me today while walking and said..... I wish I was going for a walk with you! I understood his comment, because what he was saying is it looked like Sunny and I were having fun together. 

October 23, 2016

Sunday, October 23, 2016

Sunday, October 23, 2016

Tonight's picture was taken in October of 2006. We took Mattie to a Fall festival and as you can see Mattie went down the big slide. The previous year Mattie was scared of the slides. The slides may have intrigued him but he did not want to try it. In 2006, he agreed to try it sitting on Peter's lap! That was a success and once Mattie tried it, he wanted to go down the slide MULTIPLE times that day. I was always the designated photographer in the family, while Peter went on the adventures with Mattie. That worked out well since I prefer more on the ground activities and Mattie and Peter loved movement and rides. 

Quote of the day: There is a light at the end of the tunnel, but the way out is through. ~ David Allen

Peter and I set out to accomplish a lot today. Our first task at hand was migrating all our plants (that come in during the winter) back inside. This is a huge undertaking because it requires a lot of pruning of the plants and making room for all of them. Not to mention that they are heavy to carry! Our living room is back to being green again. In the winter months, it is a real welcomed sight. 
 I have been invited to a fall brunch this week at a friend's house and I offered to make two different egg stratas. Strata  is a family of layered casserole dishes in American cuisine. The most common modern variant is a brunch dish, similar to a quiche or frittata, made from a mixture which mainly consists of bread, eggs and cheese. It may also include meat or vegetables.

This strata contains asparagus and mushrooms. It may look easy to do, but it actually is far more labor intensive than a quiche. Mainly because it requires a whole lot of chopping and cooking of each item before mixing it together. 
This strata is spinach and gruyere cheese. We went to the market yesterday to buy gruyere cheese and I got into an argument with the deli counter manager because he refused to grate blocks of gruyere cheese for me. I found him so distasteful to deal with that I reported him to the overall store manager. But each strata has a different fresh bread chopped into it. The one above has sourdough bread and this one has Italian ciabatta. 
Sunny was so good during all these chores that after we were done we took him to Roosevelt Island, which he absolutely loves! 

This is a special spot to us. We used to go to this beachy area of Roosevelt Island with Mattie. At low tide, you can literally walk out into the water. In the background is Georgetown University (with the spires), where Mattie's hospital is located. 
This is the wonderful sight we saw at the end of our walk.... a young buck! Can you see him blended beautifully within the trees. Sunny was fascinated!!!

October 22, 2016

Saturday, October 22, 2016

Saturday, October 22, 2016

Tonight's picture was taken in October of 2006. We took Mattie to ride on the Walkerville Railroad in Maryland. It was a cold day, but beautiful to see the Maryland country side. That day we sat in several different train cars. Some cars were OPEN air (and frigid) and the others were enclosed. Mattie loved moving freely about the train and watching the whole process. Mattie was a train affectionato, and needless to say this experience was a hit that day. 

Quote of the day: A vigorous five-mile walk will do more good for an unhappy but otherwise healthy adult than all the medicine and psychology in the world. ~ Paul Dudley White

We had a massive weather change today. It is real fall weather, which is a night and day difference from our upper 70 degree weather yesterday with high humidity. 

We took Sunny for a walk on Roosevelt Island and he absolutely LOVED it!
I can't make it on a walk without someone telling us how "beautiful" Sunny is! People want to pet him, and Sunny loves meeting other dogs. 
Sunny is checking out a squirrel in the tree! A walk with Sunny is not truly a walk. It is more like a sprint. He moves at a fast clip and his goal is to track down squirrels or rats (we have a ton of them in DC!). 
Sunny and I walking together!

When we arrived home, Sunny went into the living room to greet Indie. I snapped this photo because I just love how both animals want Peter's attention at the same time. It is a real hoot! But what this illustrates is that Sunny and Indie co-exist quite well together. 

October 21, 2016

Friday, October 21, 2016

Friday, October 21, 2016

Tonight's picture was taken in October of 2006. Mattie was four years old and we took him to Butler's Orchard that day in Maryland. We introduced Mattie to many fall festivals to celebrate the season. The beauty about Butler's Orchard is you get to pick pumpkins in the patch! As you can see Mattie and Peter grabbed a wheelbarrow and were headed to find the perfect pumpkin! They were very successful that year!

Quote of the day: Only the development of compassion and understanding for others can bring us the tranquility and happiness we all seek.  Dalai Lama XIV

Well given the Dalai Lama's quote above, I can safely say I lost my compassion and understanding for others today. Why is that? Well take a look at my deck! For TWO YEARS..... not a minute, not a week, not even a month, but for TWO YEARS I have been putting up with the State Department's renovations as they share a common wall with our unit. For the past two springs, the State Department has decided to do work on this shared brick wall without the courtesy of letting us know. As I always say.... they are BAD, BAD neighbors. They truly do not think about the impact of anyone else around them!
I am giving you a retrospective! So you get a feeling for what I have put up with for two years now! This is what our deck looked like in September of 2015. It was like this for over two months with scaffolding. Keep in mind, that even when they weren't on our deck, they were outside our deck for months with debris blowing in. 
Get the picture of what things looked like in September of 2015?

The work that they do in incredibly messy because it involves sand blasting, repointing bricks and then power washing. I can't tell you the amount of debris that has been coming onto our deck EVERY day. Each day I land up cleaning it up otherwise we will cart it inside. Not to mention that by the end of the day we look like we live in a war zone, with powder gray dust, concrete debris and so forth piled everywhere. I took this photo last week. 

But what truly was the last straw, was this hard hat flying from up above down onto our deck a week ago. Any one of us could have been hit by this. That is when I formally complained AGAIN to my building's management. Which was why I had a morning meeting today with the State Department's foreman and my building management. I should also let you know that they drop razor blades onto my deck too. I have picked up several. I am telling you.... a total disregard for other people and their property. 

This was the scene outside Mattie's bedroom window this morning. When I tell you I went into shock, I AM NOT KIDDING. I had a meeting with the foreman about an hour before this scene and the agreement was they were going to clean up their debris and power wash off my deck. That is all I agreed too! So when I saw 20 foot ladders outside, I LOST IT!
They placed my deck items outside in the commons area, and look what they did to my beautiful butterfly ginger lily plant. Which is in a ceramic planter. They literally threw it on its side and bent branches. 

What should have been an hour or two at the most of cleaning, turned into a 7 hour production. Again I got my building manager involved who chewed out the foreman. The foreman reported that more chalk work was needed on the wall, which is why the ladders came out. 

All I know is they better be officially done now. I don't want to see as much as a candy wrapper coming from their direction!