Saturday, March 10, 2018

Saturday, March 10, 2018

Tonight's picture was taken in April of 2009. This was a typical scene in Mattie's hospital room..... filled with people. But not just any people. Two were child life specialists and the other was a hospital pediatric volunteer. There may have been a bed sheet down on the floor for Mattie to sit on, but as  you can see he moved it aside and preferred the floor. When caring for Mattie, I had to balance his need to play and be a child, with his ability to easily get sick from germs that could be picked up easily from other people and the environment. In most cases, I opted for letting Mattie be a child. 



Quote of the day: The single biggest problem in communication is the illusion that it has taken place. ~ George Bernard Shaw

Our Saturday morning began before 5am. A continuous sound outside our window woke both of us up. When Peter went to look outside our window, he could see that tables were being set up on the highway for a race. The DC Rock and Roll Marathon. Just what we need.... another marathon and more road closures. Of all days, we really did not need this today. As we had a strategy meeting scheduled with several psychosocial researchers in Arlington, VA. 

I thought getting out of DC this morning would have been bad and that getting into Virginia would be a breeze! WRONG! Getting out of DC was easy despite the marathon. However, as soon as we crossed the Potomac river into Virginia, we could see roads blocked everywhere. Apparently there was the Four Courts Marathon in Arlington, VA. Which blocked the street where Peter's office is located! 


Despite all the traffic and road closures, we were able to meet and have a very productive meeting. There were five of us in this conference room and two others called in to participate. As one psycho-oncologist is from Canada and the other is from Boston. 

The purpose of today's meeting was to continue working on a checklist that will help psychosocial professionals all over the country tangibly determine whether they are meeting the 15 psychosocial standards of care that were published in December of 2015. The Standards were Mattie Miracle's vision, which was to create evidence based standards of care that would enable all children with cancer and their families to have access to optimal psychosocial care throughout the treatment process. The publication is several hundred pages long and most clinicians are not going to have the time or patience to read such a document. Which is why creating a chart that outlines each Standard and gives clinicians an opportunity to rate (on a scale of 1-5) how well their site is meeting each Standard will significantly help with implementation. 

I have to say after a week like this, I am exhausted. I managed sitting on a dissertation defense, hosting a 19 person volunteer dinner for the Foundation, undergoing a medical test, running a licensure board meeting yesterday, and planning today's strategy session and lunch. These are just some of the big ticket items from the week!

Friday, March 9, 2018

Friday, March 9, 2018

Tonight's photo was taken in April of 2009. Mattie was in the hospital for another round of treatment. As way typical, I snapped photos of Mattie's journey every day. That day he was admitted to the hospital and when I decided to capture the moment on camera, Mattie decided to throw his legs over his head and hide his face. Keep in mind he was connected to a large IV pole and he had a hard cast on his right leg. Which made his leg heavy! Clearly the cast and IV did not stop him in the least. To me this photo captures Mattie's personality, character, and spirit! I just love that one brown eye poking through.... staring at me!



Quote of the day: If animals could speak, the dog would be a blundering outspoken fellow; but the cat would have the rare grace of never saying a word too much. ~  Mark Twain

The April Item Drive, in memory of Mattie's 16th birthday, is definitely underway. Today, I went through twenty Amazon boxes and consolidated and sorted items. This will help me as more things continue to be mailed to us from all over the United States. This may not look like a lot of items now, but prior to my opening boxes and sorting things today, Mattie's bedroom looked like a warehouse. 

Do you see who was supervising the process? Indie, our tortoise shell cat! She doesn't need to say a word.... her actions speak volumes. As Mark Twain pointed out in his quote. 

Are you wondering about Sunny? Don't worry, Sunny was with us too. He was sitting next to me as I took this photo! I joke about this often, but Sunny and Indie are my day time companions and Mattie Miracle assistants. 

Check out Mattie Miracle's Wish List for the April Item Drive:
https://smile.amazon.com/gp/registry/wishlist/2UQOK4GY955ZL/ref=nav_wishlist_lists_1

I am signing off for tonight. It has been a full day of a licensure board meeting, dealing with Walk permitting applications, emails, toiletry drive items, and the list goes on. Tomorrow, Mattie Miracle is hosting a four hour Standards implementation strategy session in Arlington, VA. So it will be another working weekend! Though I must admit, many of our weekends are spent working. I suppose one could say that work is my grief coping strategy. Perhaps! But I also know if I don't work, the Foundation comes to a stand still. That fear is probably my biggest motivator. 

Thursday, March 8, 2018

Thursday, March 8, 2018

Tonight's picture was taken in March of 2009. This to me was classic Mattie. I did not take this photo, Mattie's nurse Katie did. Peter, Katie and Mattie were in the child life playroom together and Mattie was trying yoga using a Nintendo Wii game board. Mattie stood on this step like board and it read Mattie's movements and Mattie got feedback on what he was doing through a TV screen. Mattie thought the whole thing was fascinating. Everyone around Mattie got a chance on the board, but guess what? The joke was that Mattie was the best on the Wii despite all his surgeries. He had better balance apparently! I just love this photo because it captured Mattie's spirit to life and have fun. 

Quote of the day: It doesn’t take an instant more, or cost a penny more, to be empathetic than it does to be indifferent. ~ Brian Lee


In January, I went with my friend (who has ovarian cancer) to see my gynoncologist. Before I left her office, I mentioned some of the unusual physical issues I was facing. I was looking for her to normalize what I reported, but instead she decided not to take the wait and see approach. So today I went for another transvaginal sonogram. I will never forget the first one I took in 2012 at Washington Hospital Center. It was a reportable nightmare, where I had a very aggressive ultrasound tech, who not only physically hurt me but caused my anxiety about the procedure to increase ten fold. However, since that awful experience, I have had at least four other transvaginal sonograms. If performed by a competent and sensitive tech or radiologist, the procedure is very doable and quick. Notice what I am reporting about is NOT the medicine. It is the quality of care and how care was administered. 

When patients are coming for scans and procedures, they aren't coming to a medical facility in a happy place. Usually patients are scared, edgy, and uncertain about why they feel ill. How a medical provider manages patient stress, fears, and concerns, can really make it or break it for the patient. I have experienced the difference between working with an insensitive and clueless medical provider, versus one who truly is patient centered and takes into account how a scan or procedure may impact us. Naturally regardless of the kind of professional you work with, when you are scared, you are scared. A medical tech's personality and kindness won't change that, but it can influence how you feel about the procedure and your outlook about receiving medical care. 

The reason why my doctor takes my symptoms very seriously is because on February 1, 2012, I got a suspicious cat scan result. A CT scan which was ordered to rule out a bladder issue. The test revealed that my bladder was fine, but that I had numerous masses in my pelvis. A radiologist deemed the masses indicative of adenoma malignum. A very aggressive cancer. Again, my world stopped and I lived with this nightmare for two years. The masses are located in a position that they couldn't be biopsied. I was literally scanned every month for two years. Each month, was like living hell not knowing whether the mass grew or not or what the next steps would be. Over time, I learned that I have several masses and they are not cancerous. This is the short version of this nightmare. 

However, I was calm for today's test. Because I really did not believe something  was wrong with me. But I naturally learned that we can't always tell what is going on inside our bodies, as Mattie's cancer reminds me of that sobering reality. So naturally I had pause today because I know that a scan result can turn your life upside down within minutes. Fortunately I worked with a lovely tech and a competent radiologist. The beauty of Washington Radiology Associates, is that your test is conducted by a radiologist who gives you real time results as she is seeing them. I am very grateful for good results today and I have to say, after the test was over, I felt like I had another lease on life. So regardless of chores I had to do, I was happy that I could do them and not worry about more testing and next steps. When you get a clean bill of health, it is the best gift life can give you. 

Wednesday, March 7, 2018

Wednesday, March 7, 2018

Tonight's picture was taken in March of 2009. By this point, Mattie had undergone 8 months of chemotherapy, along with two major surgeries. I remember taking several photos like this to highlight the enormous IV pole connected to Mattie. You may notice this RED colored IV going into Mattie. Though red may have been Mattie's favorite color, this was doxorubicin, one of 5 chemo drugs Mattie endured on a regular basis. Since Mattie was dressed in clothes in this picture, I can deduce this was an admission's day to the hospital. Why? Because it was only then that Mattie wore regular clothes. When Mattie was living in the hospital, he only wanted to wear pajamas. Nonetheless, despite getting chemo, Mattie looks very calm and peaceful. But photos can be deceiving. 


Quote of the day: Friendship is the only cement that will ever hold the world together. ~ Woodrow T. Wilson

Last night we held our annual volunteer appreciation dinner at the Morrison House in Alexandria, VA. The hotel was built in the style of a Federalist mansion that blends seamlessly into the surrounding historic Old Town neighborhood. It is a charming setting which gets fantastic reviews. However, the property recently changed hands to the Marriott. 


We loved the two assigned wait staff to our event, Romil and Griselda. They both worked very hard to set up the space as we requested and they couldn't do enough to make us happy. They truly made the night special, which was good because right after the event, I filed a formal complaint about the food. The food was served luke warm, and if food could look tired, WELL THEN IT LOOKED TIRED. They also had a dessert mishap in the kitchen, and two of us had to have a completely different dessert. I expect a lot better form a boutique hotel run by the Marriott. 


We had 17 guests, plus Peter and me at the dinner. Romil snapped a few photos of all of us. This core group of volunteers have been with us for every Foundation walk, and several helped plan the Mattie March in 2009, when Mattie was alive. So imagine service to us for ten years! An incredible group of people! 

Pictured Seated (left to right): Jane Pisano, Mary Doane, Carolyn McFadden, and Ali Goldwater

Pictured Standing (left to right): Christine Cooper, Tina Lytle, Jennifer Connors, Marisa Tordella, Peggy Elkind, Denise Tordella, Patricia Tilch, Bernie Tilch, Debbie Keefe, Dawnee Giammittorio, Ann Henshaw, Dave Tordella, Katie Magnuson, and Peter, and me.  

 At past dinners, we always had handouts! This time we got rid of paper at the table and showed a power point presentation. I think the visual made communicating so much easier. We also showed the group our Walk video from last year. I really think that energized us! Here is one of the slides we shared with our core team last night. It truly shows the great progression we have made in fundraising over the years. None of which could be done with this core team!

As of this date, we have 16 corporate sponsors who in total have donated $21,500 to our $85,000 walk goal! I would say that we are officially in Walk planning mode now. 

Tuesday, March 6, 2018

Tuesday, March 6, 2018 -- Mattie died 442 weeks ago today.

Tonight's picture was taken in March 9, 2003. Mattie was almost a year old. This was the day before my doctoral dissertation defense. I can still recall how stressed out I was, but one thing was the motivator...... I wanted to graduate before Mattie got any older. I did not want to live with the stress of pursuing a higher degree and being a mom. 



Quote of the day: Looking back at my life's voyage, I can only say that it has been a golden trip. ~ Ginger Rogers

I had the opportunity today to go back to the George Washington University and sit on a doctoral student's dissertation defense. Why is this significant? Because 15 years ago today, I defended my dissertation. Pictured here was my doctoral committee................

Front Row: Dr. Pat Schwallie-Giddis, me, and Dr. Carol Hoare
Back Row: Dr. Rich Lanthier, Dr. Don Linkowski, Dr. Rolf Peterson, and Dr. Rob Gallagher

After defending my dissertation, which is like a major oral exam in which you sit around a table and everyone on the committee as they raise questions about your study. Of course you need to be prepared to effectively provide answers. After the defense, you go out to lunch with your committee. Which maybe just as nerve racking as the exam! 

This was Peter and me with Dr. Rob Gallagher. Rob was my outside the university examiner. However, Rob was key to my study, as it took me three years to find him. He worked for a large governmental agency that offered eldercare support services to its employees. Rob provided exactly what I needed, which was access to employed individuals who were caregivers of an older adult family member. It wasn't easy to find any agency who was willing to work with me and give me access to their employees. But I think Rob saw the benefits of working with me. He viewed me as a person who could give him important data about the effectiveness of his agency's work life services. Any case, we were a good match together and I credit Rob for enabling me to truly finish my dissertation. Because without data, I was in limbo!!!

After my defense was over, Rob told the committee that he wanted to offer me a Grade 13/14 job in the government to run his agency's work life program. A major job offer, which I was flattered to receive, because clearly my month of data collecting enabled Rob to see my ability to fit in his agency! 

Fast forward to today, sitting at a dissertation defense, I was left looking back at my academic journey! Would I have guessed back then how my life would have turned out? That I would have a child die from cancer and in the process learn first hand the psychological issues associated with this disease and the impact on the family!? Of course the answer would be NO! You have big plans and goals once you graduate, but as I have learned plans change! So I couldn't help but view this student from this lens today. I also found it was very clear that she was naive about the topic of aging (her topic). As TRULY not grasping its complexity. But that is the beauty of being in her 20's. Yet I do think despite being young when I wrote my dissertation, I had a solid understanding for the aging population and the system of caregivers who provide support. I credit this to watching my maternal grandmother suffer from the effects of a massive stroke, and experiencing my mom's significant level of caregiving for her own mom. 

Do I have regrets that I did not take that government job? Absolutely NOT! If I had, I would have been working around the clock and wouldn't have been instrumentally involved in Mattie's development. Which would have been truly horrific, since I only had him in my life for seven years. I would like to think that I made him my priority for 7 years, and with that I have no guilt. However, I would have had intense life long guilt, if I had made the decision to work full time, and not have had quality time with Mattie. In Mattie's short life, quality time meant EVERY HOUR I had with him! I find it interesting how attending someone else's doctoral defense today could send me right back in time!

Monday, March 5, 2018

Monday, March 5, 2018

Tonight's picture was taken in February of 2009. This was Mattie's version of a goofy face! He was busy building something out of popiscle sticks with his trusty glue gun. Mattie learned to use a glue gun in preschool! He took to it like a duck to water. It was Mattie who taught me how to use a glue gun interestingly enough. 

Mattie loved to build all sorts of structures and fortunately he had this interest because it really helped to pass the long hours and days away in the hospital. 





Quote of the day: Flowers are restful to look at. They have neither emotions nor conflicts. ~ Sigmund Freud


I have one thing after another tomorrow. One of which is attending and serving on a doctoral student's dissertation defense and the other is hosting our Foundation's volunteer appreciation dinner. Though I am not defending a dissertation tomorrow, I remember the stress and anxiety leading up to that day. That's a kind of experience you never forget, because earning a doctorate is kind of the mental equivalent of fraternity hazing. You won't get that Ph.D. without persistence, humility, and determination. As those are the three key ingredients to completing the process. 

When I earned my doctorate in 2003 (on March 10, 2003 -- pictured with me are Peter, my parents, and my dissertation chair), doctoral students had to undergo the painstaking process of finding research subjects, administering assessments, conducting interviews with these subjects, and then interpreting your own data. Now, Universities seem to understand that this original research process is too time consuming and most likely costly. So instead, doctoral students are now allowed to use data set. Meaning data that was collected by another researcher. Therefore when using a data set, students have to design a study in essence after it happened. You have to fit your research questions with the data. It is not a philosophy I care for, and given what I endured to find a sample of employed caregivers for my dissertation, I am left to pause. I realize the quality of education is in question at the high school and college levels. But I thought graduate school was preserved. 

In preparation for tomorrow evening's volunteer appreciation dinner, I worked on designing Mattie Miracle themed floral arrangements. 

The ladies in the flower store got a real kick out of me today. They wanted me to buy pre-arranged flowers and I said NO! I really prefer to pick my own flowers and arrange them myself. It takes more time, but I think it's worth it! Our home smelling intoxicating tonight. Nothing like the fragrance of fresh flowers.  

Sunday, March 4, 2018

Sunday, March 4, 2018

Tonight's picture was taken in March of 2009. Mattie received special box seats at the Verizon Center to see the Ringling Bros and Barnum & Bailey circus. This was Mattie's first and last time seeing the circus. It was a very special treat to have a whole box to ourselves and that way I did not have to worry about germs all around Mattie, given his compromised immunity. Mattie had a fun time, got all sorts of circus gear, and even saw his best buddy, Brandon (a cancer survivor) at the circus. It was a memorable moment, and all of the items we bought for Mattie that day are still on display in his bedroom. 



Quote of the day: Kindness can transform someone's dark moment with a blaze of light. ~ Amy Leigh Mercree

You maybe asking yourself.... what is this a photo of? Well today, Peter and I went to Mattie's school to see the damage to his memorial tree for ourselves. You would have to enlarge this image, but I took it because a lot was going on by Mattie's tree when we arrived on campus. There were 30 Dominion power people on campus to manage the fallen electrical wires. Wires which came down with the falling of several big tree branches. The limbs from this big tree fell onto Mattie's memorial tree and several pieces of playground equipment. In fact, one of the playground pieces used to stand directly behind Mattie's tree. You can't see if anymore because it was completely destroyed. But if you look at the big tree on the left, covered with ivy, you will see a man sitting in the tree. He had to be 60 feet or more in the air, and he was cutting down this damaged tree, branch by branch. It was a sight to watch. 

This was a big chipper, as tree limbs were cut into manageable pieces, they were chewed up in this machine. 

Peter and I had the opportunity to meet Tim Boyd today. We have met Tim on several other occasions but we did not know how familiar he was with our story until today. Tim is an arborist and outside contractor for the school. I knew the school consulted with an arborist regarding the health of Mattie's trees throughout the years, but what I did not know is it is Tim who has donated Mattie's tree to the school. I assumed the school paid for the tree all along. I was wrong. Tim is planning on making yet another tree donation to replace this damaged tree.  

We are deeply indebted to Tim for understanding the importance of the tree. He got it right away that Mattie's tree needed to be replaced. As clearly took a major blow in the storm and with all its damage it could easily get infected now. Peter and I both felt at ease talking to Tim, and we truly appreciated his understanding and compassion regarding losing Mattie. He gave me a big hug and told us he is a father and grandfather. Though saving trees is his business, he is aware of the fact that some things are bigger than the tree itself. All of Tim's crew were very respectful of Mattie's tree, especially while working around it to get at the bigger tree. In this photo you can see one of Tim's crew members collecting all the items that were salvageable from Mattie's tree. We had all sorts of ornaments on the tree and the majority of them went airborne and can't be found. But the ones that remained we collected and took home with us, along with Mattie's memorial tree plaque. 

Tim told us about Sawtooth Oak trees (pictured here), as I shared with him how much Mattie loved oak trees and particularly collecting acorns. Mattie's original red oak that was planted in 2010, died from a root infection. Since that time we were counselled away from oaks. But Tim says the Sawtooth Oak is hardy, grows quickly and is will be a much bigger tree than a Yellowwood could ever be. The Sawtooth is an Asian species of oak native to China, Korea, Japan, Indochina (Vietnam, Thailand, Myanmar, Cambodia) and the Himalayas (Nepal, Bhutan, northeastern India). It is widely planted and has become naturalized in parts of North America.

The Sawtooth Oak is typically planted  for wildlife food provision, as the species tends to bear heavier crops of acorns than other native American oak species. How do you like this cute little cap on top of the acorn? I think Mattie would have gotten a kick out of this!

But the tree leaf looks spiky, quite different from an American oak. So we are deciding what to plant, but the good news is a new tree will be planted in Mattie's memory, thanks to Tim.