Saturday, October 19, 2019

Saturday, October 19, 2019

Tonight's picture was taken on October 20, 2007. It was a Fall Festival held at Mattie's school. Though Mattie had just started that school in September of 2007, by October, he had many friends. Ironically the families of these children (Bethie, Kazu, Campbell, and Livi) in the photo are still part of our lives today and help us raise funds for Mattie Miracle. I honestly thought we would have MANY more Fall Festivals like this to attend. Ironically, the next time we came back to this very field was two years later.....for the Mattie March in 2009. By that point Mattie had cancer and his support community held a March in his honor. 


Quote of the day: The language of friendship is not words but meanings. ~ Henry David Thoreau


It never dawned on me today that it is October 20th, which means that Mattie's school is having its Fall Festival. I took Sunny to Alexandria to walk, as he loves the neighborhoods and beautiful school campuses. However, as soon as I walked passed Mattie's school, it all came back to me. The photo you see above is what I am talking about. Though the school was all set up for 2019 Fall Festival, all I could think about was the first and last Fall Festival we attended in 2007. Which then led to a whole lot of negative thinking on my part about how unfair life is and that others around me can't possibly get it! 

While watching the kids on the field running around and having a good time, with parents in tow, I just observed. I witnessed many checked out parents, with noses in their cell phones. Not that anything is wrong with that per se, other than I would say they are living their life as if this is just another task with their child. One task out of many, implying that there will be MANY MANY Fall Festivals to come. That seems like a natural deduction, as most children do not get gravely ill and die. But of course mine did, and I am happy to say that while he was alive, I was present in his life. Not glued to my phone thankfully, because right about now I would feel very guilty. Guilty that I had the time to make memories and I DIDN'T!

Meanwhile, as I was walking, I saw my friend Christine drive by. Her two children are in the photo above. As soon as she saw me, she pulled the car over to talk with me. Ironically we both recanted the Fall Festival of 2007! As our boys united us together and we too became close friends. Before Mattie got sick, the president of the parent teacher association at Mattie's school contacted me. Rich wanted me to serve as the parliamentarian for the association and to also plan and coordinate the school's Fall Festival in 2008. Given that I knew the president well, I agreed to both requests. However, in July of 2008, before the school year started, Mattie was diagnosed with cancer. So I had to contact Rich and alert him. I remember him asking me if I knew of someone who could take over my role of planning the Fall Festival. My answer was Christine! Christine and I joke about this all the time, and today I reflected with her upon the fact that we never realized three years after the photo above was taken, that we would be working together on this field again. Not for the Fall Festival, but for the FIRST MATTIE MIRACLE WALK. Funny how an event can trigger a volume of memories. 

Friday, October 18, 2019

Friday, October 18, 2019

Tonight's picture was taken on October 8, 2006. Mattie was four years old. In the fall we practically spent every weekend exploring towns and going to their festivals. The festivals always had kid friendly activities, pumpkins, and even slides. Like the one you see in this photo! We started taking Mattie to Fall Festivals in 2003, when he was only a year and a half old. Clearly back then, these gigantic slides scared him. He wanted nothing to do with the slides. But given we went back several years in a row, Mattie became more familiar with the activities, and decided to try the slides. As you can see he was riding in Peter's lap and had a great time!


Quote of the day: Candy is childhood, the best and bright moments you wish could have lasted forever. ~ Dylan Lauren



On November 1, we will be hosting our 9th annual candy drive. What inspired me to do this candy drive in the first place, was Mattie's support community (Team Mattie). When he was in the hospital, friends brought me candy. Practically daily. I am quite sure my chocolate addiction started then and there. In any case, the candy was a lifeline to the outside world and I was very grateful people were caring so deeply for me and my family. After Mattie died, I decided to do what Team Mattie did for us, but on a larger scale. Mattie Miracle accomplishes this through our snack and item carts (located at MedStar Georgetown University Hospital and Children's Hospital at Sinai). The carts offer families caring for a child with a life threatening illness access to candy, chips, nutritious snacks, water, juice, soda, iced tea and toiletries for free. You have no idea how happy these carts make families, and I consistently hear they are a life saver. 

So this brings us to our 9th annual Post-Halloween Candy Drive. We are grateful to our 35 schools, 40 businesses, and 100's of individuals who donate candy and generously support our Drive each year. In 2018, Mattie Miracle collected candy and donated it to 7 hospitals and 11 non-profit organizations that assist children with cancer and others in need. Specifically at MedStar Georgetown University Hospital (Washington, DC) and Children's Hospital at Sinai (Baltimore, MD), the candy helps to stock the snack/item carts we operate. 

In the past, we had multiple Post Halloween candy donation drop off locations. However, given the volume of candy that comes in to us, we have consolidated drop offs to one location in Arlington, VA. I am thankful that our friend Ali has opened up her home to the Candy Drive two years in a row. She has a two story detached garage that provides a fantastic set up for this massive operation. 

The Candy Drive runs from November 1-9. Then starting the week of November 11, we will be donating candy all over town. It takes us five full days to do all these deliveries and we rent a Uhaul truck two of these days. Needless to say, our candy recipients are eagerly awaiting our arrival. 


Check out our Candy Drive Video: https://www.youtube.com/watch?v=dwPwuJumIuY

Come join our Candy Drive Sorting Parties: https://www.signupgenius.com/go/20f0a48aca82aa7fc1-mattie

Thursday, October 17, 2019

Thursday, October 17, 2019

Tonight's picture was taken on October 8, 2006. This is one of my favorite photos. We took Mattie to Butler's Orchard in Maryland that weekend. He loved to ride a hay wagon out to the pumpkin patch and pick his own pumpkins. My two Farmer Browns hard at work!


Quote of the day: The shortages tend disproportionately to involve older, generic injectable drugs (which are exactly the types of drugs used to treat children with cancer), which are difficult to manufacture but command low prices, a combination that often leads manufacturers to get out of the business of making them. ~ Roni Caryn Rabin


If you are connected to the childhood cancer community in anyway, then this week you most likely have heard about the drug vincristine. It is typically used to treat children with lymphoma, leukemia, and brain tumors. Well it turns out there is a vincristine shortage because one pharmaceutical company made the "business decision to discontinue the drug." Amazing isn't that a pharmaceutical company can decide to withdraw from making a drug and yet the FDA doesn't mandate some sort of exit strategy, in order to give other companies time to meet the drug's demand.

Doctors are scrambling as they try to figure out how to treat their pediatric patients. However, they do not make dosage decisions in isolation. Instead, there are medical protocols that all cancer institutions follow. Which means that these research protocols need to be changed immediately, so that hospitals around the country know how to care for children with cancer. How would you like to be a doctor struggling to figure out how to treat a child with cancer, knowing that you do not have an adequate supply of a drug for treatment? What do you do? Give half dosages or skip dosages? The medical community is in a quandary.

However, what isn't the focus in these articles is the psychosocial consequences! Naturally! In fact, many parents of children with cancer found out about this shortage this week NOT from their doctor! They found out by reading a New York Times article! How would you feel as a parent if this happened to you? The childhood cancer community is outraged. Parents rely on their child's doctor and all sensitive information like this, is expected to come from the health care team. NOT FROM THE MEDIA! Knowing your child has been diagnosed with cancer is hard enough, but to learn through a newspaper or TV about a drug shortage makes every aspect of this ten times harder.

The one piece of good news is that Pfizer, the other drug company who manufactures this drug, said it has now taken steps to expedite additional shipments of this critical drug over the next few weeks to support three to four times their typical production output. I can only imagine the state of helplessness that parents are facing this week, as they worry about whether their child's hospital pharmacy has access to vincristine. 


Faced With a Drug Shortfall, Doctors Scramble to Treat Children With Cancer:

https://www.nytimes.com/2019/10/14/health/cancer-drug-shortage.html

Wednesday, October 16, 2019

Wednesday, October 16, 2019

Tonight's picture was taken on October 7, 2006. That weekend we took Mattie on a special train ride in Walkersville, MD. The train cars dated back to the 1800's and some cars were enclosed and some open air. Mattie tried sitting on both types and the scenery we passed in Maryland was lovely! So many cows.


Quote of the day: You have to leave the city of your comfort and go into the wilderness of your intuition. What you’ll discover will be wonderful. What you’ll discover is yourself. ~ Alan Alda

On November 2, Mattie Miracle will officially turn 10 years old. That is the day we became incorporated in the state of Virginia. For the past ten years, every event Mattie Miracle held was coordinated by me. Those who know me well, know I am all about the details. Details matter and when I plan events, I always think about how others will feel when in attendance. 

On November 7th, friends of Mattie Miracle are hosting an evening celebration for the Foundation. I haven't done a thing in preparation for this event. That is a good and also unsettling feeling. But at the end of the day, this is exactly what we want. We want others introducing Mattie Miracle to their friends, colleagues, and social circles. So in many ways this is a celebration, as it has taken us a decade of hard work to define who we are and to get our 501c3 on the map in the childhood cancer community. Having a party planned for the Foundation by its friends seems like we have now reached a new level or height. 

If you want to learn more about the event, go to:
https://www.mattiemiracle.com/events-1/10th-anniversary-celebration-fundraiser

Tuesday, October 15, 2019

Tuesday, October 15, 2019 -- Mattie died 524 weeks ago today. 

Tonight's picture was taken in November of 2002. Mattie was seven months old and adjusting to being in the tub. I can't say that Mattie loved water or bath time in the beginning. However, as he got older, he could spend hours playing in the water if I let him!



Quote of the day: Life can only be understood backwards; but it must be lived forwards. ~ Søren Kierkegaard

This is my friend Margy. She is my first Facebook friend that I made, who I did not actually know in person. We had mutual friends, as Margy was once a play therapist, and she supported many of the parents we know who had children with cancer. 

I have known Margy for five years. In January of 2018, she was diagnosed with ovarian cancer. As she tells women all the time..... you can get ovarian cancer even when your ovaries have been removed. It doesn't sound logical, but it is the reality. Which is why ovarian cancer is called the silent killer, because by the time women seek help, cancer has typically metastasized. 

Before heading to the hospital, I went to buy Margy a balloon. While talking to the lady in the flower shop who sold me the balloon, I learned that this woman's daughter (college aged) died from cancer. Naturally she and I got to talking, and she told me the one thing she can't stand is when people tell her..... with time she will get over it! We got each other immediately. 

I spent several hours with Margy and her husband today. It was my very first visit to Fairfax INOVA, a local hospital. All I can say is the facility is remarkable and every person I met was delightful. A big difference from the environment where Mattie was treated! I met a fantastic pulmonologist today, who literally came into Margy's room and performed a thoracentesis in front of me. A thoracentesis is a procedure in which a needle is inserted into the pleural space between the lungs and the chest wall. This procedure is done to remove excess fluid, to help you breathe easier. The doctor was competent, kind, and had a great bedside manner. Which helps when you know a big needle/catheter is going between your ribs to your lungs. 

My friend Margy has an amazing attitude and truly is inspirational, given all she is facing treatment wise. Of course, I can't be in a hospital and dealing with a cancer issue without reflecting on my life with Mattie. Everything about Margy's room was SO DIFFERENT from what we experienced with Mattie. Margy had closets, drawers to store things, a private bathroom and even a safe. Nothing like Mattie's room. I still can't believe we had NO closets and we shared showers with the neighboring room for 14 months! I also laughed with Margy today, because when Mattie was hospitalized, there were no safes in his hospital rooms. I literally had my purse out in the open and I can attest to the fact that in 14 months, no one ever stole a thing from my purse. Not even a tissue! I did not think about it back then, but that speaks to how I was feeling.... that I was living in my second home. I trusted my environment, not only with my purse, but with my son. 

When I left Margy tonight, look who was following me home.... Mattie Moon. It was the biggest moon ever. 

Meanwhile, Peter went to the historic Nat's game tonight with our friend Jeff. Jeff is Charlotte's dad. Mattie and Charlotte always told me that they were going to get married and that they also were going to be college roommates. 

So happy Peter could see this game tonight and can see the Nat's go to the World Series. 

Monday, October 14, 2019

Monday, October 14, 2019

Tonight's picture was taken on Halloween of 2003. That was the first Halloween Mattie got dressed up and went trick or treating. He was a year and a half old. However, Mattie did not like the whole notion of a costume! Nothing scratchy, itchy, or confining! So this pumpkin sweat suit we found together was a hit!


Quote of the day: Cleanliness is a state of purity, clarity, and precision. ~ Suze Orman

I did not have the intention today to spend six hours cleaning! But I felt compelled to tackle our plant stand in our living room. I have been using this stand not only for plants but it housed many of Mattie's items and creations! Next week, we will be taking part in a childhood cancer video series, in which a producer is coming over to our house with a camera team. I have no idea what they will be filming, but one thing I knew was the plant stand as is stood did not do a stellar job at highlighting Mattie's life. It was too congested with items, items that he worked on, but not necessarily items that were very meaningful to him. I have found over the years that I can focus on cleaning Mattie items out, when I realize the state of a display or a situation doesn't do Mattie's memory justice. Photographed above were many of the items on the plant stand. It was hard to say good-bye to his Lego creations, his Indiana Jones hat, and a figure he designed with his art teacher. But each of these items was covered in dust and there was so much on the plant stand, that I couldn't see the items that really meant a lot to Mattie. So I corrected that today. Not to mention, when you start cleaning one area, I found two other areas that needed help. Which explains the six hours in total.  

One of the items on the plant stand was this turkey. Mattie built it while in the hospital. I kept this fellow for ten years, but in all reality, I kept it because Mattie touched it. I did not keep it because it meant much to him, other than it was an activity that kept him busy while in the hospital.

This speaks to my growth, as I know even a few years ago, I wouldn't have been able to part with any of these items. 

At the end of the day, this is what the plant stand looks like. The top shelf is filled with spider plants. Of course there is a reason for this. When I moved into my apartment in Boston in 1991, the previous tenant left a baby spider plant. From that baby, I have grown many off shoots over the years. Hard to believe that this plant started with me 18 years ago. Behind the spider plants are Patches ashes.

On the second shelf down, are all of Mattie's clay creations he made in the hospital. They were cleaned today and looking beautiful. 

On the third shelf down is the Lego taxi that Mattie made on his special trip to the Lego store (once we learned of his terminal diagnosis). He built this taxi with two Lego experts. Also on this shelf is a paper mache pumpkin he created, painted wood, and even a Star Wars character that his lung surgeon gave Mattie post surgery. 

On the bottom shelf, is the steering wheel that belonged to Speedy Red (Mattie's ride on vehicle) and many of the sea shells we picked up on our vacations together.  

Sunday, October 13, 2019

Sunday, October 13, 2019

Tonight's picture was taken on October 12, 2003. It is hard to believe it was 16 years ago! We took Mattie to a Fall Festival in Leesburg, that included a farm animal petting zoo. Some of the most priceless photos I have of Mattie were his encounters with animals. Check out the look between Mattie and the sheep!


Quote of the day: There is no power for change greater than a community discovering what it cares about. ~ Margaret J. Wheatley

One of the beauties of having a dog, is you have to go outside, walk around, and chances are, you are going to meet your neighbors and others in the community. Sunny keeps me engaged with the outside world. However, recently while Peter and I were walking with Sunny, a neighbor approached us and asked us to get involved in our complex's tenant association. 

Peter and I have lived in the same place since 1994. It's a long time and because we live in the city, it's transient, as we see people come and go. Yet in our complex there are many people who have been here long term. I am talking over 50 years! To them, this is their home, their community, and they take what happens here seriously. 

I listened to our neighbor's request of us, but truly did not take it too seriously. Since we have lived here for such a long time, I haven't seen the need to be a part of the tenant's association. That said, several weeks have passed by and now Peter is on the ballot to be voted in as president of the tenant's association this Wednesday evening. That may sound nice, but we have a large complex, with over 800 units. About a 1/3 of the complex is comprised of George Washington University students. Some of the tenants in our community are not fond of having students living among us, and this has caused great tension. It is like the great divide! So what I am saying is Peter is walking into a difficult situation, yet his calm and positive attitude, is apparently appreciated by all on the board. Both sides listen to him. 

With Peter taking on this role, I have had the opportunity to meet other people living in our community, who want to get involved and want to find out more. Case in point, we had a university student over this afternoon, who has agreed to serve on the board with Peter. I honestly think this is a first! As the board in the past never thought to invite a student to serve. Any case, I find this all rather funny, because when we first moved into the complex I too was a student at GWU. Not all students are rowdy. In fact I think we can all learn a lot from graduate students and likewise there is a lot students can learn from working professionals.