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!

Tuesday, November 17, 2015

Tuesday, November 17, 2015 -- Mattie died 322 weeks ago today.

Tonight's picture was taken on November 12, 2015. This was us early in the morning (before 6am) in the pre-op area, awaiting Mattie's second surgery. That surgery was long and grueling, since it involved removing his left arm bone, right leg bone, and wrist bone. Replacing them with prosthetics. It was a TEN HOUR surgery, plus several hours in the post anesthesia recovery unit. It seemed ENDLESS and torture. However, whatever fear we had about the surgery, quickly dissipated  when we saw the trauma and pain he experienced post-surgery. 


Quote of the day:  A kind gesture can reach a wound that only compassion can heal. ~ Steve Maraboli

On Wednesday I will be undergoing surgery for the precancerous mass that was found in my breast on October 30. It has been quite a two weeks! I am not sure if the candy drive has been a blessing or a curse during all of this. But after the surgery I am not allowed to lift anything heavy for at least a week. So I knew that I had to get it into gear and start sorting candy and delivering it before Wednesday. We still have MUCH more to do, but I got 1,800 pounds of candy distributed, which is quite an accomplishment. Because it involved hauling candy, sorting it, and driving all over the DC, Maryland, and Virginia area. As this photo shows, this is the amount of candy I have left in our home. The rest of it is at my friend Ann's house. Since she is our drop off location in Virginia. In comparison to the amount we started with in our home, this bunch looks much more reasonable! 

I have to report to the Hospital admissions area tomorrow at 9am. NOT my favorite area. I can't tell you HOW MANY times I went there with Mattie. Despite him being a repeat customer, we still had to go through the admissions process every time. Each time we did, it was as if no one knew us. It was an odd and frustrating experience, of which I complained about the process after Mattie died. When you have a sick child in tow, the admission process has to be streamlined!

So I check in at 9, and then at 11am, a radiologist works with me to guide a wire through my skin into the mass. This guide wire assists the surgeon. My issue with this, is the wire is inserted while I am conscious. They give you a local anesthetic, but the notion isn't comforting. Then the surgery begins at noon. It is supposed to be an hour long, with two hours in recovery. So that is the plan. I try not to dwell on it, because if I focus on it, my anxiety builds. I do not go into any hospital or procedure without Mattie in mind. When the hospital did a pre-surgery screening call with me, they asked me if I ever had chemotherapy. My response to the caller was, does watching my child endure chemotherapy count? I wasn't trying to be facetious but when your child faces something, a part of you does as well. But naturally I understand my immunity has not been compromised like Mattie's.

I spent the day running around town delivering and picking up candy. My delivery today was to this wonderful Mystery Machine. This van belongs to Special Love for Children with Cancer. They are a non-profit which we support through our candy drive. Angela Ashman, Special Love's program director, met me today as we transferred 500 pounds of candy into the van. People all around us were fascinated by the process in the parking lot and one fellow even snapped a photo! All I could think of when seeing this van, was Mattie. Mattie loved Scooby Doo, in which the Mystery Machine was featured in the series. Mattie even had a plastic Mystery Machine on his birthday cake one year. He LOVED Scooby Doo that much. When Mattie battled cancer, he watched every Scooby Doo episode and movie possible. It was the only thing that engaged him and brought him some happiness. So Scooby Doo means a lot to me. 

Angela snapped a photo of me with the 500 pounds of candy in the Mystery Machine. 

I also met with my college roommate and friend, Leslie today. Leslie coordinates our candy drive in Maryland.... she collected this candy from B'nai Shalom of Olney, the American Bankers Association in DC, and The Aspen Hill Club in Rockville, MD. Leslie gave me 700 pounds of candy today, of which she sorted it as well. Which is a labor of love!

Monday, November 16, 2015

Monday, November 16, 2015

Tonight's picture was taken in September of 2005. That weekend we took Mattie to a park for a walk and a picnic. Mattie loved eating outside and being in wide open spaces. He always related to the outdoors. The only thing that seemed to calm him down and lull him to sleep as a baby was being outside, getting fresh air, and being away from crowds. 


Quote of the day: Generosity consists not the sum given, but the manner in which it is bestowed. ~  Author Unknown

I visited two sites today and donated candy! My first stop was Hospital for Sick Children in Washington, DC. Pictured with me is Kathryn, a child life specialist at the Center. Mattie Miracle donated 350 pounds of candy to the Center and Kathryn told me HOW APPRECIATED the candy is by families! 

My second site visit was to the Ronald McDonald House in Washington, DC. Pictured with the 350 pounds of candy is Lesley and Courtney. I also had the opportunity to talk with Karen Torres, the executive director of the Center. Karen calls me the "Candy Lady" and remembers me from last year's donation. Karen said that the candy is a BIG HIT with the families at the House and is so happy that Mattie Miracle continues to support Ronald McDonald each year. 

So far we have donated candy to:

Children's Inn at NIH --- 300 pounds
Ronald McDonald House in Falls Church, VA --- 300 pounds
Hospital for Sick Children --- 350 pounds
Ronald McDonald House in Washington, DC --- 350 pounds

Tomorrow we will donate 500 pounds of candy to Special Love for Children with Cancer. So in two weeks we have delivered around 1,800 pounds of candy. With MORE candy deliveries STILL to do!!!

I picked up another trunk full of candy today donated to us by the Glover Park community in Washington, DC and Brownie Troop 879. I spent five hours sorting this candy so it could be donated tomorrow!

Sunday, November 15, 2015

Sunday, November 15, 2015

Tonight's picture was taken in September of 2005. I just found this photo on our Shutterfly online account. I totally forgot that we took Mattie peach picking. But after I saw this photo, I do remember that we came home with a ton of peaches. I made all sorts of things, including jam. 
Mattie loved the whole experience and thought it was fabulous to be able to pick a real fruit off the tree and eat it. He was our little Farmer Brown. 


Quote of the day: There are few people whom I really love, and still fewer of whom I think well.The more I see of the world, the more am I dissatisfied with it; and everyday confirms my belief of the inconsistency of all human characters, and of the little dependence that can be placed on the appearance of either merit or sense. ~ Jane Austen

This was the view of the Gulf of Mexico from our hotel room. We started the day slowly, returning emails and getting fresh breezes from our room's balcony. It was a delightful morning. 

We were able to have breakfast outside at the hotel and that was equally delightful. Near the restaurant's patio was this wonderful fountain filled with water lilies, koi, ducks, and even a frog.

When I approached the fountain, this duck started quacking at me! She was making a racket until I purchased fish food for her and her buddy!

The water lilies in the fountain. It was a real Monet moment.

We are now back in DC safely! Seems like we just left. When we got home tonight, we transported 600 pounds of candy to the car in order for me to make two more deliveries tomorrow.... Hospital for Sick Children and the DC Ronald McDonald house!