Thursday, November 26, 2015

Thursday, November 26, 2015

Tonight's picture was taken in December of 2005. We took Mattie to Florida during the Christmas season. In honor of my mom's milestone birthday today, I purposefully selected this photo to post! 





Quote of the day: When we give cheerfully and accept gratefully, everyone is blessed. ~ Maya Angelou

This was a photo of our Thanksgiving Day/Mom's birthday dining room today!

Peter and I were cooking the entire day! Here is what our dinner buffet looked like!

Peter snapped a photo of me with my parents!

I captured a photo of Peter in the garden! Typically Peter is taking the photos of all of us so I wanted to make sure we got a photo of him too! 

Here is what my homemade pumpkin pie looked like!

A photo of our apple pie. Somehow after a full day of cooking and cleaning, I don't seem to have much energy to process or write anything. Other than we hope our readers had a beautiful Thanksgiving! 

Wednesday, November 25, 2015

Wednesday, November 25, 2015

Tonight's picture was taken in November of 2008. Mattie received this wonderful turkey hat from his school counselor, and as you can see Mattie loved it and put it right on. He was the cutest turkey around in my opinion. This was our last Thanksgiving with Mattie and it is a holiday neither Peter nor I will ever forget. Mattie was home recovering from limb salvaging surgery. He was in severe pain and it was at that time his clinical depression and PTSD symptoms began. It was frightening and what I recall feeling was absolute helplessness and hopelessness. It maybe why I really do not care for Thanksgiving anymore. 


Quote of the day: It's not enough to have lived. We should be determined to live for something.May I suggest that it be creating joy for others, sharing what we have for the betterment of personkind, bringing hope to the lost and love to the lonely. ~  Leo Buscaglia


Peter and I started our day off by making a pumpkin pie and an apple pie for Thanksgiving Day dinner. I learned how to make a "Brown Bag Apple Pie" from my mother in law. Who I believe got this recipe from her mom. Needless to say this pie recipe has been in Peter's family for generations. It has to be my all time favorite pie and there are many secret little steps to this pie, but the key is that you have to put the pie in a brown paper bag (like a grocery bag) and bake it stapled shut in the oven for an hour. I know that may sound odd and perhaps you think paper will burn in a 425 degree oven, but it doesn't. Paper burns at 451 degrees. Baking an apple pie in a brown paper bag has many advantages..... all the juices remain in the bag and not all over your oven, and second and most importantly it seems to trap the juices in the pie! It gives the pie a fantastic and unforgettable flavor! 

We are working on getting dinner prepped for Thursday, as Thursday is a milestone birthday for my mom. In addition to cooking dinner for 10 people, we are also hosting a dinner party for her on Saturday. We stopped by the restaurant today to finalize things, and I am glad that Peter and I could be in Los Angeles for this special occasion. Given how I have been feeling and then dealing with surgery, nothing was guaranteed. 

Meanwhile, in Alexandria, VA, the last sorting event took place today! The sorting event took place at St. Stephen's & St. Agnes School (SSSAS). This was Mattie's School, and the School did an "All-School Saintsgiving Candy Sorting"day!!! Students from all three campuses collected post-Halloween candy and sorted it for Mattie Miracle! Mattie Miracle is THANKFUL to SSSAS and we know that thousands of families caring for children in our region will benefit from this incredible service!!!!

This was the crowd which gathered to sort candy today at Mattie's school!

People were filled with energy and were having fun while sorting candy. I think candy can bring a smile to just about anyone's face. 

Each table appeared to have their own system for candy sorting, and that is also part of the fun! To develop your own system that works for you and your own team. 

Get the picture for the number of people involved in this process??

Here is where the final sorted products landed. Right now, Mattie's school is storing about 5,000 pounds of candy for us, for which we are very grateful. I will be teaming up with the School on December 1, and making the last candy donations around town!

Tuesday, November 24, 2015

Tuesday, November 24, 2015 -- Mattie died 323 weeks ago today. 

Tonight's picture was taken in November 2004. Mattie was two and a half years old. My mother in law sent this round red toy to Patches, our cat. Patches of course loved it, but as you can see SO DID MATTIE. He got a kick out of playing with it and also entertaining Patches. The funny part about this toy was when you squeezed the hand pump, a little toy mouse would pop out of the hole in the red round base. It was like hide and seek with a mouse, and it was hysterical to watch both Mattie and Patches react to this surprise. 




Quote of the day: There is no exercise better for the heart than reaching down and lifting people up. ~  John Holmes

We went for a walk today in Toluca Lake. When I went to high school in Los Angeles, Toluca Lake was where our home was located. It is a community filled with unique houses that date back to the 1920's and the landscaping and trees that comprise the community are just very special! My first spotting today were these wonderful sunflowers. Flowers that mean a great deal to me. 

It is not unusual in Southern California that homes have outdoor fountains. As we passed a house today, I noticed this glorious fountain......a fountain that had a Goldfinch show taking place. I caught this one bird, but there were several others fluttering all around. 

As we continued walking, we came along these two kitties! Honestly they looked like they were waiting on their door step for lunch and weren't in the least disturbed by our presence or my photos!

Check this out? This plant is an eye catcher! An agave! You just can't help but want to touch it, which of course I did! On the sides of each of the fronds are prickly
needles, so you clearly know it is the boss. 

Now this one to me was noteworthy! The grass looks beautiful no??? Well it is Synthetic Grass!. In other words, astro turf. Los Angeles is dealing with such a drought, that people can't water there lawns or gardens. Only twice a week and for minutes at a time!!! So people are turning to astroturf! 

Here is what is being promoted about astroturf..... Astroturf is a lifestyle that saves not only money and precious resources but also allows more free time for our customers for the important things in life. Instead of fussing around mowing the lawn on a weekend our artificial landscape turf is virtually maintenance free. No more mowing! Not only will you have more free time, you’ll also save big on your water bill.

This was one of my favorite roses to see today in Toluca Lake. Something about the white picket fence and colorful roses!!!

More Roses!!! It was a glorious weather day, and as Peter and I know, we have to appreciate these warm and sunny days in November!

Monday, November 23, 2015

Monday, November 23, 2015

Tonight's picture was taken in November of 2004. Mattie absolutely LOVED trains. All kinds of toy trains. This little table we had for Mattie was used for all sorts of activities, chats, and lunch! As you can see it wasn't unusual for train tracks to be set up on this table. However, with Mattie's creations, he loved leaving them assembled for days after he designed them because he would usually build upon them and continue the play. 



Quote of the day: The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well. ~  Ralph Waldo Emerson

This morning we went for a three mile walk in my parent's neighborhood. When I think about the fact that it is cold in Washington, DC and yet in the upper 70s here, it is hard to imagine! Along our walk we came across these beautiful hibiscus trees and had to snap a photo!

We also walked passed several grapefruit trees. I was perplexed why no one picks their trees, but I guess when you have access to such a tree, it is something you just almost take for granted.  

This to me was a LA sight..... "Mannequin Santa" just hanging out on a balcony!

Meanwhile, back in Alexandria, VA, there was a caravan of candy underway! Thanks to Bud Garikes (upper school director), Dean Mills, Dean Supple, and several strong St. Stephen's & St. Agnes high school seniors, around 4,000 pounds of candy was moved from my friend Ann's home to the School. The School will store it for me until December 1, when they will help me distribute it to our remaining sites around town!

Students carried 45 LARGE bins filled with candy to the bus. I assure you candy is very heavy and you really do need able bodies assisting in this important task. 

I wasn't there to see the reaction these students had to seeing this candy or to hear their commentary, but I can imagine what it was like! Because even though I have become somewhat desensitized to the candy over the years, when I look at all of it in totality it is shocking.

A VERY FULL BUS load of CANDY!!!

Sunday, November 22, 2015

Sunday, November 22, 2015

Tonight's picture was taken in December of 2005. We took Mattie to Fort Lauderdale that holiday season and visited Butterfly World. An amazing preserve filled with all sorts of butterflies and even birds! A little piece of paradise. That afternoon we introduced Mattie to parakeets and as you can see he was intrigued, fascinated, but hesitant to feed them himself. Which is understandable considering these birds were flying freely all over the place and had no trouble landing on your head or shoulder!




Quote of the day: Doing nothing for others is the undoing of ourselves.  ~ Horace Mann

Peter and I landed in Los Angeles safely from an uneventful flight. On the flight with us was a woman with a dog. This is the second time I have seen this occurrence. The dog wasn't in a carrier, but sitting right next to the passenger. Like a therapy dog, except with no special sign attached to the dog. I assume these dogs that I have seen on flights are there to assist their companion with anxiety! But these dogs always capture my attention and today's pooch was walking up and down the aisle on a leash! You couldn't miss him!

Peter captured a photo of the famous Hollywood sign as we were landing. It was a glorious weather day in LA, in the 70s, which was a lovely change from what we left in DC.

We went out tonight for dinner, and strolled through this wonderful lit shopping area. It wasn't congested, but as Peter described it, enchanting. 

We took Peter to the water themed area in this complex. The water is filled with koi and turtles and every time I visit this area, it reminds me of Mattie. Mattie would have loved the metal statues of turtles and things. As you can see, Peter sat on a spraying turtle statute, with water gushing out of this turtle's mouth! 

Peter snapped a photo of my mom and I by the pond. 

This little boy statue gets me EVERY time. It reminds me of Mattie and I wanted to show it to Peter tonight! Who enjoyed it just as much. 

Saturday, November 21, 2015

Saturday, November 21, 2015

Tonight's composition was created by our Facebook friend, Tim Beck. Tim creates 
magnificent pieces of photographic art for so many parents who lost their children to cancer. Tim surprised me with this one today. I have to be honest when I first saw this photo, I did not remember taking it or even the context of where it was taken. But I kept thinking and thinking and then I remembered! I did not take this photo of Mattie, his babysitter, Emily did! She snapped this photo of Mattie while he was visiting her apartment. I also did not recognize the pose, because when Emily took the photo Mattie was upside down in her chair. But Tim played around with the photo to make it seem like Mattie was integrated in this gold heart. The original photo is below. 

October 2006










Quote of the day: Anyone who thinks that they are too small to make a difference has never tried to fall asleep with a mosquito in the room.

~ Christine Todd Whitman

Though I am well aware of the pain I am in, that does not prevent me from walking, doing and accomplishing things! In fact, today was a full day of chores for us. Peter took our remaining candy that we had sorted in our home, which was about 700 pounds of it, and drove it to our friend Ann's house. Ann is storing the candy until Mattie's school comes to pick it up, and then I am going on a school bus on December 1 to make the last three remaining deliveries! This bus will have about 3,000 pounds of candy in it and remember I have already delivered 2,000 pounds SO FAR before my surgery!!!

It is turning cold and I can see my fellow sparrows are looking for birdseed. I have fed the birds since Mattie was a baby! I am quite sure we have many of the same birds that visit us year to year. Because they know our pattern and where we place our feeders! It is almost like they are homing pigeons, returning for the winter. In any case, feeding the birds are the only highlight of my winter. I love watching them, their patterns, and so forth. It keeps me engaged with nature, which I find peaceful and connects me with Mattie.  

Tomorrow, Peter and I head to Los Angeles to visit my parents. Not only for Thanksgiving, but to celebrate my mom's special birthday, which falls on Thanksgiving, November 26th! 

In the midst of getting ready for our trip, I am happy to say that the smell of candy is dissipating from our home. Instead, I can now admire our lovely Christmas Cactus which has decided to bloom!

Not to mention our wonderful Butterfly Ginger Lily plant. This plant produces flowers that DON'T disappoint! It is the flower that keeps on giving since it has multiple buds that unfurl at different times. So this intoxicating fragrance is traveling around our home, and despite it being cold outside, it is tropical inside for us! 

Friday, November 20, 2015

Friday, November 20, 2015

Tonight's picture was taken in November of 2004. We took Mattie to the zoo that weekend with his cousins! Mattie enjoyed his time with his cousins and though tentative about climbing and playing in a new physical space, he had a great time!




Quote of the day: Some strive to make themselves great. Others help others see and find their own greatness. It's the latter who really enrich the world we live in. ~  Rasheed Ogunlaru


Peter and I were visited this morning by a Washington Post reporter, Brady Dennis, and Bill O'Leary, a Washington Post photographer. They will be doing a story on Mattie Miracle and our National Standards of Care project and publication in December. Here is the funny part about all of this. On July 24, 2010, the Washington Post did a story on us entitled, D.C. couple keeps son's memory alive through foundation to help kids with cancer. You can read that story below. That isn't the funny part, the ironic part is that Bill O'Leary was the photographer assigned to us back in 2010! So this is the second story he will be doing with us, now five years later! 

When Bill saw us today, he remembered us well. Bill took this lovely photo of Peter and I in 2010 on our couch with Mattie looking down on us.

I joked with Bill, because the last time he was in our home, it was a disaster zone. Things of Mattie's piled up all around us, both downstairs and upstairs (this photo shows some of the chaos in Mattie's room, but this was taken after the floor was cleaned up). We looked like an episode from the TV show, Hoarders. Before Mattie got sick, I was a neat and organized person. But while caring for him and living at the hospital there was no way I could take care of things at home. Meanwhile between hospital stays we would cart home all the gifts Mattie received on a daily basis. We basically were ingesting more than our home could consume, and I did not have the energy to deal with it. After Mattie died, I did not have the heart to part with anything and was emotionally too exhausted to clean and process things around me. Which is why I only began cleaning out our home in 2013! Only two years ago. That is noteworthy in and of itself and I did it alone. I did not have support through this process. 

But Bill remembers the chaos and he remembers that Mattie's room looked like a warehouse filled to capacity with boxes. It was impossible to maneuver in the room. Very different than it is today (actually there have been updates to the room since I took this photo on the left in November of 2013)! In 2013, I couldn't take the chaos any longer and I also realized we were not doing Mattie's memory justice. So by donating his clothes and toys, I was able to save the things that were the most meaningful to him and they are either hung on the wall, displayed in the white shelves, or dispersed around the room. 

When Peter and I met with Brady two weeks ago to discuss the Foundation with him, we met at a Starbucks. However, I could see that my home office intrigued him because I told Brady that my desk is placed in the same spot that Mattie's bed used to be and that I do all the Foundation work in Mattie's room, surrounded by his things. This helps to always remind me what our mission is! When Brady and Bill came over today, they wanted to hear about the items in Mattie's room. Bill photographed them and us, and Brady listened intently to us describing Mattie's cherished art pieces and items. That may sound nice or typical, but it isn't for me. Rarely does someone want to visit me or walk through Mattie's items with me, to relive these memories and cherished times. I may have been conveying information to Brady and Bill for an article, but in all reality they gave me a gift today. The gift of listening and wanting to learn more about Mattie.

The Washington Post article from 2010:

http://www.washingtonpost.com/wp-dyn/content/story/2010/07/23/ST2010072305829.html?sid=ST2010072305829

It is my greatest hope that candy collecting and sorting is coming to an end. We are at 5,000 pounds now!!! I have 2,500 at my home (of which I have delivered close to 2,000 pounds between this week and last) and my friend Ann has the other half. Today Ann held several last sorting parties at her home. Ann's garage is lined with storage bin after storage bin. At least 35 of them!!! Pictured here are Maria, Dawnee, Peggy, and Jane. Our faithful sorters and supporters of Mattie Miracle. 

A photo of Jane and Ann sorting and organizing because on December 1, these bins will be loaded on a school bus at Mattie's school and the candy will be delivered to our remaining locations!

Nora and Anna are showing us that sorting is fun for all ages! Got to love the Santa hat..... I think candy brings out the festive in all of us. 

Get a feeling for the bin brigade? 

AND MORE Bins

Girls creating labels for the bins so we know which candy is in what bin. 

The labeling of bins continues through the evening!

Thursday, November 19, 2015

Thursday, November 19, 2015


Tonight's picture was taken on November 24, 2008. Days before Thanksgiving. Mattie was home recovering from his limb salvaging surgeries. Though you would think we would all be happy to be home and out of the hospital, WE WEREN'T! Being home was challenging for us because it meant managing Mattie's pain, his medications, flushing his broviac catheter lines and trying to help Mattie cope with his impossible situation. In the hospital there were a lot of distractions, outlets, and people who attempted to pull him out of his depression. But at home, we had NO support. Needless to say, I will always remember this horrifically painful Thanksgiving, a Thanksgiving in which we had trouble making Mattie happy and pulling him out of his deep funk. I can feel that funk as if it were yesterday. 


Quote of the day: A best friend is the only one that walks into your life when the world has walked out. ~  Shannon L. Alder


As hospital experiences go, I would say that yesterday was a positive one. Thankfully I had the where with all to ask Linda (Mattie's child life specialist) and Debbi (Mattie's sedation nurse) to meet us at hospital admissions and stay with us through the process. I am not sure what is worse, being the patient or being the family caregiver waiting and not knowing what is going on. For the most part, Peter was able to follow me around expect during my needle localization and surgery. For those he had to remain in the waiting area. I am happy that Debbi encouraged me to advocate for Valium. I am much more forceful when advocating for someone else, than I am for myself. But Debbi could see that my request wasn't unreasonable and encouraged me to say.... NO, despite what your procedures are I need Valium. 

Before they could remove the mass, I first had to undergo another sonogram and mammogram. This imagining was necessary in order to place a WIRE, yes a WIRE through my skin into the mass. The wire serves as a guide for the surgeon to know where the mass is, because remember my mass can't be felt! However, the insertion of the wire is done while you are conscious! I think the notion of that, the potential of pain, and just being in a hospital in general made me anxious. As I told the nurse..... yes the average person can probably go through this wire procedure without anxiety meds, but I am NOT your average patient, I lost a child to cancer and I have the medical trauma to prove it. She couldn't deny my request, so out came the Valium. 

The placement of the wire was interesting. I had two radiologists and a tech with me. These had to be my FAVORITE people of the day. I loved the radiologists... they listened, answered questions, and kept me posted every step of the way. But Janelle, the tech, I fell in love with. She couldn't do enough to make a painful experience more bearable. In fact, when I went in today for my follow up appointment, Janelle saw me from across the room and waved at me! My surgeon even told me that the radiologists wanted to know how the surgery went, since they took a liking to me, and she says this rarely happens! That was touching to hear. 

Not everyone understands what Peter and I have lived through, only certain people we come across in the health care industry get it! Case in point, in my follow up visit today, I first met with the surgeon's nurse practitioner. I am less than wild about her and her patronizing tone. I feel that in my situation screening sonograms are necessary. Though she heard me, she said that insurance doesn't cover screening sonograms, only screening mammograms. So unless I present with pain, no one will write me a script for a screening sonogram in the future. I neither liked her tone or the understanding of the problem! She said that my mass wasn't cancer, just precancerous, and therefore that doesn't merit my sonogram screenings for the future. She then gave me a lecture about over testing, that if you test for something you are going to find something. All I could say is REALLY!? I believe in being proactive and not waiting around for a problem to arise, especially when I diagnosed my own issue now. So this woman and I were NOT on the same plane nor does she have any empathy for what I have lived through. 

After the wire placement, I then was wheeled to a pre-op area and it was there I met the anesthesia team. They were fantastic, the attending physician was all business and his resident was personable. But I felt like I was in capable hands. The funny part about this is they wheeled me into the OR and had me move myself from the gurney to the OR table. One nurse asked me if I felt woozy. I said NO, I am very awake and alert, and the sedative isn't working! Which is hysterical, because after I said that I literally passed out and the next thing I knew I was in the post-op area. DAZED!!! I learned right away from my c-section with Mattie, how crucial anesthesiologists are, they can make it or break it for you. 

Though I was undergoing the surgery I was worried about Peter. I know how difficult it is when something is wrong with either of us. We just feel more vulnerable after Mattie's diagnosis and death. We really just have one another, and if something happens to one of us, it is problematic. Which is why I told Linda about my surgery. I knew Linda had the where with all to be able to support me and Peter at the same time. I saw her in action when she helped me with Mattie. But what I love about Linda is she assesses what you want and she then works her magic to accomplish it. She doesn't come in with her own agenda, or a set script of what you should be doing! This kind of temperament  works wonders for me. Because when I am stressed out and anxious, not unlike Mattie, I don't want to hear talking. As I say always, if I get sick, I want Linda by my side. That was one of the reasons I chose Georgetown for my surgery. Linda just gets us, she knows what we have been through because she lived it right along side us, every step of the way. She knows how I think, what bothers me, what I like, and so forth. She learned these things while we were both helping Mattie, so in essence she is the perfect caregiver and advocate for us. 

When I got back home last night, I received this adorable care package in the mail from our friend Lori. I have never heard of Grandma's Chicken Soup company, but I have to say I LOVE IT! The soup is very fresh, no preservatives in it or salt. But lovely big pieces of chicken, carrots, and noodles! It reminds me of homemade chicken soup my own grandma would make for me when sick! 

The soup comes with this lovely soup mug, a spoon, oyster crackers, an adorable carrot pen, and a chicken shaped cookie!!! 

Wednesday, November 18, 2015

Wednesday, November 18, 2015

Tonight's picture was taken in November of 2008. Mattie was in his hospital room recovery from his ten hour long surgery. Mattie was remarkable because he literally was bandaged on every limb, was dealing with pain pumps, all sorts of IVs, a catheter, and was relegated to his bed. It was after that surgery that Mattie never walked again. I think it was a blessing that we did not know this was going to be the outcome before enduring the surgery and the recovery. 


Quote of the day: You can give without loving, but you can never love without giving. ~  Robert Louis Stevenson

An update on Vicki: her surgery went very well today and she is at home tonight resting in bed having completed a full day of needle placements, anesthesia, surgery, recovery and moving around Georgetown Hospital.  The surgery went as planned and everything worked like a well oiled machine. 

I want to thank everyone who supported us leading up today and especially today! All the texts, the emails and calls went far to help Vicki and I feel thought of and cared for.  I also want to especially thank three wonderful people who helped us on-site today:  

First, to Ann Henshaw, thanks for stopping by many times, checking in and offering your support.  Second, to Debbi Laviolette and her "Throwing her badge around" support for us. Thanks for being involved, showing up and helping at every turn including volunteering to stand in as a monitoring nurse and assist the Radiologist with the needle placement.  

And third, and an extra special thanks, to Linda Kim.  Linda, once again you were our angel on the ground. You are truly a remarkable person, and I thank you for all that you did today, from moving the car, to sneaking into Post-Op to sitting with me and distracting me while Vicki was under the knife, just to name a few of the things you did for us today.  I agree with Vicki and if I ever get sick, I am going to Georgetown if only because I know Linda Kim will be on the job! Thank you Linda!

We have a follow-up appointment on Thursday with Dr. Tousimis to check on the incision and to get general follow-up instructions.  Meanwhile, Vicki handled the Versed and Propofol like a champ, and was eating crackers and drinking ginger ale within 20 minutes in recovery.  She is now in bed having eaten a lot and drinking a lot, all of which are very good signs that she is doing well.

Thanks again to everyone for your love and support today. You have no idea how important and how meaningful it is to know we have such wonderful people watching out for us and thinking of us!