Saturday, February 29, 2020

Saturday, February 29, 2020

Tonight's picture was taken in March of 2004. Mattie was almost two years old and that day we took him to the National Children's Museum. In one of the rooms, it focused on transportation! Well Mattie was transfixed on all the vehicles from a motorcycle to even a fire engine!


Quote of the day: Music gives a soul to the universe, wings to the mind, flight to the imagination and life to everything. ~ Plato

Today we saw a musical production called Relativity. We know the artistic director of Take the Stage Performance Company, Susan Thompson. Susan is the wife of one of our Mattie Miracle board members. Each February, we attend the Company's musical production. 

The Company's performers are all teenagers. Who clearly spend a lot of time rehearsing for this big production. Needless to say their productions never disappoint. I would like to note that Susan gives FREE tickets to children who have cancer and their families each year. It is a very thoughtful gift she does in Mattie's memory. 








The musical helped to take my mind off my teeth for a few hours. I had a root canal on Thursday, which was supposed to take my pain away. Instead, I would say I have pain times ten. I have been in communication with the endodontist and we are giving it a week to see if my nerves calm down. Given that I had this issue for almost a year, he feels it may take time to heal. We shall see. All I can say is thank goodness for advil and tylenol. 



Check out the Performance Company's promotional video from their 2019 musical:

Friday, February 28, 2020

Friday, February 28, 2020

Tonight's picture was taken in March of 2005. Mattie was almost three years old! This was what our living and dining rooms used to look like! Trains and cars everywhere. Of course the sippy cup of milk was always part of the journey! I traveled everywhere with a sippy cup of milk, regardless of the season. 

Quote of the day: Charity is just writing checks and not being engaged. Philanthropy, to me, is being engaged, not only with your resources but getting people and yourself really involved and doing things that haven’t been done before. ~ Eli Broad

Pictured from left to right: Kelly Beck (Head of child life), Adina (Mattie Miracle's child life specialist), Susan Daw (Director of Children’s Hospital and Women’s Services), Peter, Vicki, and Mary Jane Herbert. 

We went to Children's Hospital at Sinai today in Baltimore to donate $46,000 to the Mattie Miracle Child Life Program Fund. A fund that pays Adina's (our child life professional) full-time salary. 

As tonight's quote points out, we wouldn't be able to write such a check without the incredible support of all of our donors. Clearly Peter and I are passionate about psychosocial care and I believe that Mattie's story has engaged our support community. 

Pictured left to right: Vicki, Dr. Aziza Shad, Peter, and Adina

Dr. Shad was the physician on call the day Mattie died. We have followed her to Baltimore to support her programs and her great work. 

It has been a tradition that with check signing days, we bring cupcakes. The cupcakes are made by me and they are in memory of Mattie. As cupcakes were his food of choice when on treatment. 

After our cupcake party, we went around the pediatric units with Adina and pushed our snack and item cart.

Adina made these wonderful displays about child life and her work at the hospital. I am so glad we have copies of them now. 

Some of the things Adina does in a given week. 

Reflections from a mom of a 4 year old who deeply appreciates Adina. It is worth reading!

As tonight's quote points out.... the beauty of doing things that haven't been done before.... specifically our snack and item carts are unique, they engage our support community, but they also help thousands of families a year. 

Thursday, February 27, 2020

Thursday, February 27, 2020

Tonight's picture was taken in February of 2003. Mattie was 10 months old and one thing we knew about Mattie right away was that he loved his bottles. He would get an almost dreamy look on his face while consuming a bottle. Both Peter and I always got a kick out of this, but in reality this was the only time (other than sleeping, which he rarely did) when Mattie wasn't moving.


Quote of the day: Love conquers all things except poverty and toothache. ~ Mae West


In October of 2019, I had my first root canal. I did not know what to expect but it is much easier than it sounds. In fact, there are many jokes about root canals, but frankly I think tooth pain is worse than having a root canal. Mind you before having a root canal, I suffered with tooth pain from March to October 2019. The reason for the lapse in time was because the thinking was my pain was from a filling, which caused my dentist to remove the old filling and replace it with a crown. But the crown only made the situation worse. While this one tooth was bothering me, two others began problematic. So last week I had a second root canal and today a third! I am hoping this is it. Today's procedure was about two hours because of extensive nature of my root system. But with modern technology, you remain numb, feel very little pain throughout the procedure, and overall it preserves the tooth. 

I can't say that I am pain free right now. As it takes a few days to recover from the assault on the tooth. I included some information below about root canals, but I am here to dispel all the myths about them.  

“Endo” is the Greek word for “inside” and “odont” is Greek for “tooth.” Endodontic treatment treats the inside of the tooth. Root canal treatment is one type of endodontic treatment.

To understand endodontic treatment, it helps to know something about the anatomy of the tooth. Inside the tooth, under the white enamel and a hard layer called the dentin, is a soft tissue called the pulp. The pulp contains blood vessels, nerves and connective tissue and creates the surrounding hard tissues of the tooth during development.

The pulp extends from the crown of the tooth to the tip of the roots where it connects to the tissues surrounding the root. The pulp is important during a tooth’s growth and development. However, once a tooth is fully mature it can survive without the pulp, because the tooth continues to be nourished by the tissues surrounding it.

Endodontic treatment is necessary when the pulp, the soft tissue inside the root canal, becomes inflamed or infected. So my tooth looked like the right hand side of the photo. 

The endodontist makes an opening in the crown of the tooth. Very small instruments are used to clean the pulp from the pulp chamber and root canals.

After space is cleaned and shaped, the endodontist fills the root canals with a rubber-like material called gutta-percha. The gutta-percha is placed with an adhesive cement to ensure complete sealing of the root canals. 

Wednesday, February 26, 2020

Wednesday, February 26, 2020

Tonight's picture was taken in February of 2004. Mattie was almost two years old and I am quite sure I snapped this photo to captured my busy bee at work. Mattie was the ultimate multi-tasker and as you can see he was carrying books, walking around, looking at things, and I assure you taking everything in!

Quote of the day: Some days are just bad days, that’s all. You have to experience sadness to know happiness, and I remind myself that not every day is going to be a good day, that’s just the way it is! ~ Dita Von Teese

Today was a very busy day. We started by visiting the US Department of Health and Human Services (HHS). We had a meeting there at 9:30am. It was my first time ever going into this building and probably like all governmental buildings, you need to allow for time to process through security. 

 It took us about 20 minutes to wait on line and then process through. They even take a photo of visitors that is kept on file for future visits.  

We went to talk with HHS about how the agency is implementing the STAR Act. Which is a piece of legislation that Mattie Miracle worked on with the childhood cancer community and was passed into law in 2018. I would say our meeting today was very pleasant as well as very productive. I love when people are straight forward, eager to help, and transparent about the process. It makes the work of an advocate much easier and gratifying. 

After visiting HHS, Peter and I went for two visits on Capitol Hill. The HHS building is basically right near the House office buildings. So it was an easy walk. 

I am pictured with Matt Bormat. Matt is a Senior Vice President at Banner Public Affairs. Brett, our board member, is a founder partner of Banner. Brett has once again offered the services of his company pro-bono to us as we figure out next steps in our legislative agenda. 

Our first congressional visit today was to Rep. Jackie Speier's office. 

Our second visit was in the Hart Office building of the Senate. We went to visit Senator Reed's office. 

From an architectural standpoint, this maybe my favorite office building on capitol hill. To me it is bright, airy, and I love the Alexander Calder metal sculpture in the middle of the atrium. 

Is this not glorious? Our first daffodil has sprouted in Mattie's memorial garden! Spring is on the way. 

Tuesday, February 25, 2020

Tuesday, February 25, 2020 -- Mattie died 543 weeks ago today. 

Tonight's picture was taken on February 14, 2004. Mattie was almost two years old. I snapped this photo because Mattie loved trying on my shoes or Peter's. He would go clip clopping around our home. The funny part was when he would also try to put on Peter's pants! It was hysterical, as he tried to walk around with big shoes and pants. Honestly there was more material than boy. 

On an aside, I can see the furniture on the right hand side of this photo. We had to move that piece, because when Mattie was in preschool, our neighbor was moving and she gave Mattie her upright piano for free. She wanted him to learn to play. I can't look at that piano now without thinking of Mattie or our neighbor Susan. Many of our neighbors fell in love with Mattie. 



Quote of the day: Life's under no obligation to give us what we expect. ~
Margaret Mitchell


Over the next two weeks, Peter and I have several Mattie Miracle meetings. Starting tomorrow, we are meeting with the Department of Health and Human Services, followed by a visit to the senate. The goal is two fold, to introduce ourselves so that these entities so they understand who Mattie Miracle is and what we have become which is the center for excellence in psychosocial care for children with cancer. The second goal is to find ways we can work together to bring attention to the psychosocial standards of care and most importantly to implement them at treatment sites. This isn't a small task, but I would say the next two weeks are about bringing awareness to the issues and the Standards and to signal to others that we have owned this space for quite some time. 

Back in 2012, when we told people that Standards of Care were needed and that our vision was to create them, people thought.... sure, but at the same time.... no way! In three years, with the assembly of an incredible team of professionals, the vision became a reality. I try to remember this, because what seemed like it was impossible, was actually very possible. It is a matter of  finding the right people who are committed to a cause, understand what our implementation vision is, and who want to be part of this healthcare solution! 

Monday, February 24, 2020

Monday, February 24, 2020

Tonight's picture was taken 16 years ago today. That weekend we took Mattie to the Natural History Museum in Washington, DC. They had an interactive exhibit with screens on the floor. As you can see Peter was pointing out things and Mattie was interested. Mattie was a very inquisitive child and wanted to understand the world around him. I knew he loved animals, so I figured the Natural History Museum would engage his mind. I never had the opportunity to take Mattie to an actual art museum. As I did not think this would have intrigued him. However, given his propensity for art, I do think this would have been something he would have appreciated as he got older. 


Quote of the day: Always give without remembering and always receive without forgetting. ~  Brian Tracy


Today I went to Mattie's hospital to push our Mattie Miracle Snack and Item Cart around the pediatric units. I had the opportunity to see Mattie's favorite HEM/ONC nurse, Tricia, as well as two other nurses who cared for Mattie. It saddens me that the majority of people who cared for Mattie are no longer working at the hospital. So in many ways, the hospital is becoming like a foreign place to me. 

However, as Katie (the director of child life) and I pushed the cart around today, I had the opportunity to see just how important this cart is to families living in the hospital, while caring for their child. One mom practically jumped out of her child's room chair when she saw the cart. Another mom wasn't having a good day and nothing on the cart seemed to interest her. Until she saw the kind of candy she loves. I swear her whole attitude and demeanor changed when she picked up those lifesaver sweet and sour gummies! Her reaction may sound silly, but in all reality, I understand where she is coming from. Which is why we started the carts in the first place. When friends would bring me chocolate each day, it was like winning the lottery. It was then and there that my chocolate addiction started. To this day, it is very hard for me to go a day without a piece of chocolate. 

While at the hospital, I bumped into the director of the art therapy program. She mentioned to me that she came across some art pieces in the clinic that belonged to Mattie. She wanted to know if I wanted them! Naturally you know I DID! 

The first one she calls 'mini Mattie.' Apparently Mattie and his clinic friends created this clay fellow in a wheelchair. I have absolutely no memory of it! How can that be? Maybe because Mattie was very prolific in his art creations that year, so some things fell off my radar scope. 

But look at this stunning mosaic! At first I did not think this was Mattie's piece! Mainly because I don't remember it or even working on it! Yet when I turned this piece of wood over, Peter's handwriting is on the back and it says "Mattie Brown." This beautiful sun, sailboat and beach scene mosaic was created by Peter and Mattie! Peter remembers it. I can't wait to hang it up! To me, it is very special!

Sunday, February 23, 2020

Sunday, February 23, 2020

Tonight's picture was taken in February of 2003. Mattie was 10 months old and we got him dressed up to go to a birthday party. I love this photo because Mattie looked very cute as he was all dressed up to attend a little girl's tea party! I remember that party and that moment in time. Especially when it came time for birthday cake. Most kids love that part of any party, but NOT Mattie. Guess who usually landed up with his cake? That's right, me! Unlike Mattie, I love all kinds of sugar. 





Quote of the day: I have always believed that the Good Samaritan went across the road to the wounded man just because he wanted to. ~ Wilfred Grenfell

Last night (Saturday), we took Sunny for his evening walk. As we headed back home, we noticed three emergency vehicles in our complex's driveway. We tried to figure out where the emergency was, never thinking it would be on our floor. We could see a stretcher outside our neighbor's door. We have known JP since 1994. He is the fellow who owns a Jack Russell Terrier, a dog that Mattie loved to play with. 

Given we are not related to JP, nor are we his medical power of attorney, we felt like pushing our way into his townhouse while he was interfacing with the paramedics wouldn't be appropriate. Nonetheless, we waited outside his front door and spoke to the paramedics as they left his townhouse. We explained that we are neighbors and also have a key to his townhouse. They told us that JP did not want to go to the hospital. Given that we did not see JP, we figured things were stable. After we said goodbye to the paramedics and thanked them, we went upstairs to check on JP and his dog, JJ. 

Last night, JP was able to talk but seemed very dehydrated as he was suffering all week from gastroenteritis. He also seemed to be in pain, but he reported falling twice because he was so weak from the virus and dehydration. In any case, we made a deal with him...... if he did not want to go to the ER on Saturday night, we were going to take him to see a doctor on Sunday morning. In fact, we agreed to come into his apartment at 9am. THANK GOODNESS we did!

When we arrived this morning, JP's condition seemed ten times worse. We woke him up and he was disoriented, had slurred speech, and when I saw his face, half of it was drooping. Needless to say, Peter called an ambulance and within minutes three showed up. It was a balancing act managing doors and his dog. Getting into our complex requires a fob key, so I was running up and down the stairs letting emergency professionals into the building. Then the fun began. Our complex elevators aren't very big. They can barely fit a stretcher. However, once we got the stretcher to his front door, they were unable to get this stretcher up the stairs of the townhouse. Which meant that the paramedics had to figure out a way to get JP downstairs as he was unstable and couldn't move, and forget about walking. 

The paramedics called in on their radio for a basket stretcher and within minutes another crew arrived to bring this upstairs. JP was placed into this and was carried downstairs to the stretcher. Unlike last night, JP did not fight us about going to the hospital. In fact, he wasn't able to verbalize at all, which is why you ALWAYS need an advocate around in a time of crisis. When I met the fire department supervisor this morning and took him up the elevator to the townhouse, I basically told him that he had to take JP to the emergency room. That we would have done it ourselves, but he wasn't stable enough to move. Needless to say, I briefed the paramedics in the elevator, so by the time they arrived at JP's bedside, they could see the seriousness of the matter. 

I think it is vital that we are all aware of the acronym FAST, to help us remember the signs of a stroke............................................ 

F.A.S.T. – Signs of Stroke Should Prompt FAST Action
The American Stroke Association developed this easy-to-remember guide to help identify the signs of a stroke.

F – Face drooping. Is one side of the person’s face drooping or numb? When he or she smiles, is the smile uneven?
A – Arm weakness. Is the person experiencing weakness or numbness in one arm? Have the person raise both arms. Does one of the arms drift downward?
S – Speech difficulty. Is the person’s speech suddenly slurred or hard to understand? Is he or she unable to speak? Ask the person to repeat a simple sentence. Can he or she repeat it back?

T – Time to call 9-1-1. If any of these symptoms are present, dial 9-1-1 immediately. Check the time so you can report when the symptoms began.

After JP was in the ambulance, we walked to the hospital and waited. Given that we are not family, the hospital truly did not have to talk with us. But on the contrary, I found everyone at the George Washington University Hospital very helpful. The ER doctor even came out to talk with us and basically thanked us for bringing JP in, most likely saving his life. We continue to call into the hospital and get updates, but without a medical power of attorney, we truly are getting locked out of the process. Which is a problem, given that there are no family members around to intervene.